Biopolitics and Subjectivity: the Case of Autism Spectrum

BIOPOLITICS AND SUBJECTIVITY: THE CASE OF AUTISM SPECTRUM

CONDITIONS IN ITALY

M. ARIEL CASCIO

Submitted in partial fulfillment of the requirements for the degree of Doctor of

Philosophy

Department of Anthropology

CASE WESTERN RESERVE UNIVERSITY

May, 2015

CASE WESTERN RESERVE UNIVERSITY

SCHOOL OF GRADUATE STUDIES

We hereby approve the thesis/dissertation of

M. Ariel Cascio

candidate for the degree of Ph.D.*.

Committee Chair

Atwood D. Gaines

Committee Member

Eileen Anderson-Fye

Committee Member

Lee Hoffer

Committee Member

Anastasia Dimitropoulos

Date of Defense

March 6, 2015

* We also certify that written approval has been obtained for any proprietary material

contained therein. 3

Table of Contents List of Tables ...... 7 List of Figures ...... 8 Preface...... 9 Acknowledgments...... 11 List of Acronyms ...... 13 Abstract ...... 11 Introduction ...... 16 The Autism Concept...... 16 Experiences along the Autism Spectrum ...... 16 The Research Questions ...... 22 Dissertation Overview by Chapter ...... 25 Chapter 1: Literature Review ...... 29 Chapter Overview ...... 29 Section 1: The Anthropology of Biomedicine ...... 32 Section 2: The Anthropology of Autism ...... 41 Critical Autism Studies ...... 42 Cross-Cultural Studies of Autism ...... 49 Section 3: New Biopolitical Theory...... 52 Overview of New Biopolitical Theory ...... 54 Molecularization ...... 58 Somatic Expertise ...... 60 Illness Identities ...... 64 Collective Identities and Biosocialities ...... 65 Cross-Cultural Studies of New Biopolitical Theory ...... 66 Section 4: The Anthropology of Youth ...... 69 Rites of Passage ...... 72 Identity...... 73 Peer Relationships ...... 75 Sexuality ...... 79 Transition to Adulthood ...... 81 Conclusion ...... 83 Chapter 2: Background ...... 85 Chapter Overview ...... 85 4

Section 1: History of Autism ...... 85 Section 2: History of Italian Autism Services ...... 90 Section 3: Management of Italian Autism Services...... 100 Chapter 3: Research Design ...... 116 Section 1: Conceptual Framework ...... 116 Section 2: Methods ...... 119 Participant-observation ...... 119 Staff and Other Professionals ...... 120 Parents/Guardians ...... 121 Youth with Autism ...... 125 Data Analysis ...... 127 Dissemination of Results ...... 130 Limitations ...... 130 Section 3: Description of Fieldsites ...... 132 Day Center 1 ...... 133 Day Center 2 ...... 136 Day Center 3 ...... 139 Residential Center 1 ...... 142 Residential Center 2 ...... 145 Social/Recreational Group 1 ...... 147 Social/Recreational Group 2 ...... 152 Results Overview ...... 156 Chapter 4: Professional Conceptualization of Autism ...... 157 Chapter Overview ...... 157 Section 1: What is Autism? ...... 158 Autism, Asperger’s Syndrome, and Intellectual Disability ...... 166 What Causes Autism ...... 172 Section 2: How Should Autism be Managed? ...... 174 Psicoanalitica ...... 176 Psicologico ...... 177 Ufficiale ...... 178 Psicoeducativo...... 183 Cognitivo-Comportamentale ...... 184 Relazionale ...... 187 5

Ecologico ...... 188 Psicomotricità ...... 189 Auto-Mutuo-Aiuto ...... 190 Specific Approaches...... 191 Life Cycle ...... 209 Conclusion ...... 215 Chapter 5: Parents’ Perspectives ...... 218 Chapter Overview ...... 218 Section 1: What is Autism? ...... 219 Discussing Autism ...... 227 Contesting the Diagnosis ...... 231 Autism, Asperger’s Syndrome, and Intellectual Disability ...... 236 What Causes Autism ...... 237 Section 2: How should autism be managed? ...... 239 Therapies and Interventions...... 240 School ...... 254 Services ...... 260 Conclusion ...... 283 Chapter 6: Youth with Autism ...... 285 Chapter Overview ...... 285 Section 1: What Is Autism? ...... 286 Sex, Gender, and Sexuality ...... 306 Section 2: Interfacing with Services ...... 309 Being Occupied ...... 309 Dopo di Noi ...... 310 Satisfaction with Services ...... 311 Youth Relationships ...... 311 Conclusion ...... 317 Chapter 7: New Biopolitical Theory ...... 319 Chapter Overview ...... 319 Section 1: Defining New Biopolitical Theory ...... 320 Molecularization ...... 323 Somatic Expertise ...... 330 Individual Identities ...... 343 6

Collective Identities and Socialities ...... 351 Section 2: Complicating New Biopolitical Theory ...... 360 Frequency of Themes ...... 360 Overlap of Themes ...... 365 Section 3: Whose New Biopolitical Theory? ...... 368 Conclusion ...... 375 Conclusion and Implications...... 378 Research Questions and Answers ...... 378 Contributions to the Literature ...... 384 Future Research ...... 386 Broader Impacts ...... 387 Appendix 1 – Interview Guide Topics ...... 389 Staff and Professionals ...... 389 Parents ...... 391 Youth with Autism – Individual Interview ...... 395 Youth with Autism – Group Interview ...... 398 Appendix 2 – Codebooks ...... 400 Appendix 3 – Italian Block Quotes ...... 407 Chapter 4 ...... 407 Chapter 5 ...... 416 Chapter 6 ...... 425 Chapter 7 ...... 430 References ...... 438

List of Tables

Table 1: Demographic Profile of Interview Participants (Professionals) ...... 121 Table 2: Demographic Profile of Interview Participants (Parents)...... 124 Table 3: Demographic Profile of Interview Participants (People with Autism) ...... 126 Table 4: Time Spent at Each of 7 Sites ...... 133 Table 5: Commonly Referenced Characteristics of Autism (Professionals) ...... 162 Table 6: Possible Causes of Autism (Professionals) ...... 173 Table 7: List of Philosophies and Approaches ...... 174 Table 8: Specific Approaches References ...... 192 Table 9: Parent-Reported Diagnoses ...... 222 Table 10: Commonly Referenced Characteristics of Autism (Parents) ...... 225 Table 11: Possible Causes of Autism (Parents) ...... 239 Table 12: Approaches ...... 240 Table 13: How Parents Heard About Services ...... 261 Table 14: Parent Goals for Participation ...... 268 Table 15: Commonly Referenced Characteristics of Autism (Youth) ...... 300 Table 16: Emergent Codebook ...... 400 Table 17: a priori Codebook ...... 403

List of Figures Figure 1: Domains of Child Neuropsychiatry ...... 95 Figure 2: The Italian Educational System ...... 95 Figure 3: The Institutional Path of Someone with a Disability Certificate in Italy ...... 103 Figure 4: New Biopolitical Theory Themes and Subthemes ...... 322 Figure 5: New Biopolitical Theory Themes ...... 361 Figure 6: Molecularization Subthemes ...... 361 Figure 7: Somatic Expertise Subthemes ...... 362 Figure 8: Individual Identities Subthemes ...... 362 Figure 9: Collective Identities and Socialities Subthemes ...... 363

Preface

This dissertation reports on data collected in Italy, primarily in Italian. I would therefore like to take this opportunity to share some notes on the transcription, translation, and writing conventions herein.

I have put Italian words in Italics even when they were English loan words such as Milano è business. Translations are in parentheses (Milan is business) or, in block quotes, under the original.

I use double quotations “Milan is business” for direct quotes from interviews or from fieldnotes in which I know I copied down the verbatim statement. I use single quotes, 'Milan is business' to denote speech, but speech that I recorded non-verbatim (in fieldnotes or in interviews without audio)

Brackets indicate words that were added for clarification when they were not spoken, “Milan is [for] business.” Brackets around ellipses indicate missing words,

“Milan is […] business.” Three dots indicates a missing words within a sentence. Four dots indicates a sentence or more is missing. Ellipses without brackets indicate pauses made by the speaker. To maintain confidentiality, I also use brackets to indicate that I have replaced a proper noun (name of a person, place, or organization) with a common noun or phrase, most often “[figlio]” ([my child]) in place of the child’s name.

I use parentheses to indicate phrases that were wholly inaudible, such as “Milano

è (inaudible)” (Milan is (inaudible)) or when I have doubts about the accuracy of my transcription, such as “Milano è (business)” (Milan is (business)).

I am using the term each site used such as ospiti, atleto, ragazzo in thick description. When I need to refer to people with autism as a whole I generally follow 10

person-first language in this dissertation as suggested by the American Psychiatric

Association. When translating, I use terms such as “people with autism” rather than translating substantive adjectives such as autistici literally (i.e. “the autistics”) as such a translation indexes a dehumanizing stance that the Italian phrase does not.

The quotations herein were checked by native Italian speakers Alice Larontonda and/or Cecilia Maffei, but changes were approved or rejected by me. Most of the interviews I trascribed myself, so the corrections were on the order of correcting articles, pronouns, or prepositions. Substantive changes related to vocabulary choice or turn of phrase were not made, meaning that some of the quotes do not sound “proper” but they are “correct.” I also did not change indicative verbs to subjunctive even when the subjunctive was warranted. Finally, I took out a substantial amount of intercalari – interjections such as diciamo, no, insomma, ecco – which Italian speakers unanimously told me disturbed the flow of reading, and whose meaning equates to English interjections such as “like, you know, um.” The purpose of all modifications and corrections were to increase readability and avoid creating unimportant distraction to the reader through the use of colloquial speech.

All mistakes in transcription or translation remain my own.

Acknowledgments

Few works are created through the lone efforts of a single researcher, and this dissertation is no exception. Ethnographic research in particular becomes especially arduous without financial support, and I would therefore like to begin by thanking my funders. A pilot study in 2011 was funding by the Eva L. Pancoast Memorial Fellowship and the Phi Beta Kappa Graduate Research Grant, both from Case Western Reserve

University (CWRU). Data collection over academic year 2012-2013 was funded by the

U.S.-Italy Binational Fulbright Commission through the Fulbright IIE Program. Data analysis was funded by a Dissertation Research Assistance Grant under the supervision of

Eileen Anderson-Fye and the Baker Nord Center for the Humanities Graduate Research

Grant, both at CWRU. The writing of this dissertation was supported by the Arts &

Sciences Dissertation Fellowship at CWRU.

There are several individuals and organizations who made this work possible. I thank Roberto Malighetti and the Università degli Studi di Milano-Bicocca, without whose affiliation for the Fullbright grant this project would not have been possible. I especially thank everyone at Cascina Rossago; Cooperativa Aurora 2000 and the Spazio

Autismo; Cooperativa I Percorsi; Cooperativa Spazio Aperto Servizi; Fondazione Istitute

Sacra Famiglia ONLUS; Gruppo Asperger ONLUS; and Progetto Filippide for the help, hospitality, and learning opportunities they provided me.

It is equally vital that I thank a number of people who have provided valuable support on several specific tasks. I thank my chair Atwood Gaines and committee members Eileen Anderson-Fye, Lee Hoffer, and Anastasia Dimitropolous for their time, support, and feedback. In addition to my committee and the faculty at CWRU, Tamara 12

Daley helped me with the research design by talking to me about her own work on autism in India. I also need to thank several individuals for their help in preparing my Italian language documents in the first place, including Denise Caterinacci, Ann Cheney, Mirna

Cola, Veronica Pozzi, and the CWRU IRB staff. I owe my gratitude to several people during the data analysis and write-up phase particularly. Alice Larontonda I cannot thank enough for her transcription assistance, her valuable insight, and her continuous patience with me. Alice also checked many of the translations that appear in this manuscript, as did Cecilia Maffei. Abigail Ordillas assisted with the construction of Table 1 as well as in searching for new sources for the literature review. Kristi Ninneman and Chantal Van

Esch provided detailed advice for the statistical analysis in Chapter 7.

The intellectual merit I hope the reader finds in this dissertation was strengthened through conversations with a number of other scholars. I especially thank Catherine

Osborn, Kristi Ninneman, Elizabeth Fein, Clarice Rios, Barbara Costa, Enrico Valtellina,

Mirna Cola, and again Alice Larontonda. Enrico Valtellina provided feedback on Chapter

2. Kristi Ninneman provided detailed feedback on an early draft of Chapter 4. Sarah

Koopman-Gonzalez and participants in the CWRU Arts & Sciences Dissertation

Fellowship program provided detailed feedback on an early draft of Chapter 5. My writing partners in the Women in Doctoral Studies Writing Guild helped keep me on task, especially Chantal Van Esch.

On a personal note, I need to thank Jenny Hancher most especially, for talking me through crises both existential and practical on both sides of the Atlantic. Finally, I of course thank my family and friends who have provided unfailing love and support during this journey. 13

List of Acronyms

ABA Applied Behavior Analysis APA American Psychiatric Association ADOS Autism Diagnostic Observation Schedule ADI-R Autism Diagnostic Interview – Revised AQ Autism Quotient CAA Comunicazione Aumentativa e Alternativa (Augmentative and CARS AlternativeChildhood Autism Communication) Rating Scale CBT Cognitive Behavioral Therapy CF Comunicazione Facilitata (Facilitated Communication) CHAT Checklist for Autism in Toddlers DAN! Defeat Autism Now! DGS Disturbo Generalizzato dello Sviluppo (Generalized Developmental DIR Disorder)Developmental, Individual-differences, Relationship-based Model DPS Disturbo Pervasivo dello Sviluppo (Pervasive Developmental Disorder) DSM-IV- Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, TRDSM -5 TextDiagnostic Revision and Statistical Manual of Mental Disorders, Fifth Edition ICD-10 International Classification of Diseases, 10th Edition PECS Picture Exchange Communication System PEP Psychoeducational Profile TTAP TEACCH Transition Assessment Profile TEACCH Treatment and Education of Autistic and Related Communication WAIS HandicappedWechsler Adult Children Intelligence Scale WHO World Health Organization

Biopolitics and Subjectivity: The Case of Autism Spectrum Conditions in Italy

Abstract

M. ARIEL CASCIO

The prevalence and scholarly interest in autism has increased dramatically in recent decades. This study contributes to the social study of autism by investigating autism in Italy. It asks: (1) How is autism conceptualized in Italy? (2) How do people labelled as autistici and their families define, manage, and experience that diagnosis? (3)

How do the discourses expressed by professionals, people with autism, and their parents resonate, or not, with new biopolitical theories such as biosociality and biological citizenship? To answer these questions, data were collected using a cross-sectional ethnographic design including participant-observation at seven autism-specific services as well as interviews with staff and other autism professionals, parents of people who attended, and the attendees themselves when possible. The results of this study demonstrate that the local particularity of Italian health and human services impacts the way autism is conceptualized in Italy and the ways that people with autism and their families define, manage, and experience this diagnosis.

This study addresses several important bodies of anthropological literature, including the anthropology of biomedicine; the anthropology of autism; “new biopolitical theory;” and the anthropology of youth. Its central descriptive findings provide an experience-near exploration of autism-specific services for youth. By exploring the 15

transition to adulthood for youth with developmental disabilities, it challenges anthropological definitions of adolescence proposes a definition of adulthood as an amalgamation of materials and roles to which all individuals have a right based on the standard of their peers. Its central theoretical finding challenges and expands “new biopolitical theory.” It refines and operationalizes this theory and explores the limits of its applicability in Italy.

This study also has several implications for readers with a professional or personal interest in autism through its rich description of the experiences of professionals, parents, and people with autism. It may foster greater understanding and collaboration between these groups by presenting their perspectives side by side. Furthermore, it provides a rich account of the experiences of people with autism and their families, making their perspectives accessible to a broader audience of scholars, professionals, advocates, families, and people with autism themselves.

Introduction

The Autism Concept

This dissertation explores the concept of “autism,” called “autismo” in Italy. I describe autism in this way, as a “concept,” because the term has been and continues to be used to mean many different things. Just as Kleinman and Good (1985a:2) once wrote that depression is “considered mood, symptom, and illness,” Silverman (2012:2) writes,

“autism refers to a symptom, a disorder, and a syndrome.” Autism may refer to a diagnostic entity, variously conceived of as a disease to be cured, a disability to be managed, or a neurological condition to be embraced as a part of human diversity (Cascio

2012; Eyal et al. 2014). It may refer to a symptom, as in Eugen Bleuler’s (1950) original use of the term in descriptions of schizophrenia to refer to the characteristic of self- absorption (Hacking 2010). It may refer, as it did to some of my participants, to a personality trait or characteristic just like any other. It may refer to an integral part of an autistic person’s experience – a way of being and not, in the words of Jim Sinclair, “an appendage” (1993). In Anglophone discourse, autism is both a medical or psychiatric diagnosis (and which of the two, if either, is often a point of contention) and also a locus of increasing popular culture fascination. For these reasons and more, I introduce the idea of “the autism concept” much as Margaret Lock (2013) discusses “the Alzheimer phenomenon,” to encompass the range of ways that autism might be conceptualized and to avoid wedding myself to a particular understanding of autism as I entered into my field research and as I enter now into this dissertation which discusses its findings.

Experiences along the Autism Spectrum

One of the most definitive features of autism as it is often understood in the 21st 17

century – both in the United States and in Italy; both as a disorder and as a neurological diversity – is its variation along a “spectrum.” Most discussions of autism include reference to an “autism spectrum” and one way to refer to a person with autism is as a person “on the spectrum.”1 In psychiatric terms, autism is not a categorical diagnosis

(someone either has it or does not) but a dimensional diagnosis (someone can have it to a greater or lesser extent). Though not without problematizing the distinction, many scholars and clinicians use the terms “high functioning” and “low functioning” autism to describe the severity (or strength) of autism symptoms (or characteristics) (e.g., Fenton and Krahn 2007). I prefer to use the terms “autism with lower levels of support needs” and “autism with higher levels of support needs” to recognize the social basis of disability.2 Regardless of terminology, the notion of an autism spectrum recognizes that there is no singular experience of autism.

In the spirit of this observation as well as the spirit of ethnography, I open this dissertation with a description of not one, but two amalgamated descriptions of a participant with autism: one with higher levels of support needs and then one with lower levels of support needs. In both of these descriptions, I describe an 18 year old man, as most people with autism diagnoses are boys and men. The majority of people with autism that I met and spent time with in Italy had very high levels of support needs, as recognized by the Local Health Boards. They attended Day and/or Residential Centers

1 Philosopher Ian Hacking (2010) proposes the term “autism manifold” to recognize non-binary complexity. 2 I learned of this sort of terminology through Gruppo Asperger (2013), whose website uses the phrase “autismo con bisogno di supporto non intensivo” (autism with need of non-intensive support) following the announcement of the DSM-5. For English language use of the term “support needs” see for example the American Association on Intellectual and Developmental Disability’s Supports Intensity Scale, an instrument which measures support needs (Thompson 2004) 18

with an attendee to staff ratio of three or fewer attendees to one staff member. However, the majority of people with autism quoted in this dissertation had lower levels of support needs, and attended Social/Recreational Groups in addition to schools or internships with much higher attendee to staff ratios.

Take for example a participant with higher levels of support needs. He may speak very little if at all, but having spent so much time with him, it would be unfair to say he does not communicate. He is particularly interested in automobiles, spending his leisure time paging through magazines and pointing out his favorites to me. Sometimes, with lightning quickness, he darts out a hand and grabs a different magazine or a comic book.

He moves through the pages quickly, but laughs at the ‘right’ places, the pages where the biggest jokes of the comic appear. When leisure time is over, he may return to the stack of magazines several times, not to page through them but to adjust the stack, seeming to seek some sort of order that isn’t apparent to me or to the staff. When satisfied or at least convinced to leave it, he completes whatever work he has to do next without seeming to look at it, tilting his head to the side. He hurries through it, and runs to the next place he has to be. If he has to stay in one place very long, he flaps his hands or rocks back and forth. He often makes a gesture the staff tells me is his way of asking “what’s going on?”

A staff member explains to him what they are waiting on and what they will do next. He seems satisfied for about 30 seconds, then starts repeating the gesture. If someone has taken the seat he wants, he might start rearranging the furniture to achieve a new optimal seat. He is semi-autonomous in activities of daily living, setting the table, eating, toileting, and changing clothes with the help of step by step visual agendas. He always seems to want to be with people – especially the staff – and to know what they are doing, 19

constantly turning around in his chair to see who is there and often using the “what’s going on?” gesture to ask for more information. There are clearly those other attendees with whom he gets on, and others whose presence bothers him – and same with staff.

Even when bothered he seems cheerful, but staff and his parents tell me that he has gone through periods of severe depression as well as severe aggression, which are only now managed through a combination of properly dosed pharmaceuticals and the structure of his daily life. Even though we don’t talk, I appreciate that I know his unique interests and try to share them by talking to him about cars I’ve seen. I work to learn his idiosyncratic sign language and offer appropriate verbal responses.

Take on the other hand the example of an individual with lower levels of support needs. Conversation is somewhat easier in that we both speak Italian and relatively fluidly. He is particularly interested in the fantasy genre, and rushes to tell me about it every time we see each other. He is working on a fan fiction that he would like to turn into a novel, and often pulls me, staff, or other attendees over to read his latest installment. It is hard to tear him away from the group at the end of the day, because he wants to share his project repeatedly with me – though he may get protective of it and start to hide if it someone from the group he does not like tries to look. He may get very frustrated and notably down if no one seems interested, snapping at others or withdrawing completely to a private corner. However, he has several peers that share his interests, and when they are there they seem almost inseparable, engaged in a constant dialogue about fantasy novels, films, and games. They repeat favored quotes back and fourth at each other more than daily. They construct elaborate plans for projects on which they can collaborate. Sometimes I notice his language seems stilted, pausing in atypical 20

places, but other times his prosody is no different than anyone else’s. If these peers are not there, he may wander far from the group, maintaining neither proximity nor eye contact with anyone else. He is completely autonomous in activities of daily living, but notes that he doesn’t dress like his peers. He may wear a costume piece drawn from his favorite fantasy series for weeks at a time before he is bored with it. Despite his current favorite, however, he always remembers which books I’ve read and films I’ve seen, since he asks me about all of them, and he always shares the latest news on my favorites with me. He also shows me around the places we visit, introduces me to people, helps me with my Italian, and explains to me how things work – from the rules of the game to the rules of Social/Recreational Group. However, I also notice little mismatches in our communication, such as what seems to be an inordinant amount of concern and panic when I bump my head. I learn to articulate my feelings much more explicitly, explaining that I am not hurt by the bump on my head, that I am not mad that he spilt water on me, that I am uncomfortable with a comment he made and why, that I am pleased that we are playing this particular game, and so on. Despite these few difficulties, we generally communicate quite freely.

These two brief descriptions present two very different young men. Indeed, each of the young men and women I met and spent time with in Italy were different from the others. Others had high levels of support needs, but were verbal, unlike the man described in this example. Some people spoke very fluidly on their topic of interest, but hardly participated at all if the conversation topic changed. Some asked specific questions, continuing their pattern of questioning the same way in numerous conversations regardless of the answer. Some had specific questions related to their 21

special interests that they wanted to ask everyone they met. Some almost never initiatied contact or conversation unless specifically prompted to do so (and sometimes not even then). Some spoke mostly in stilted single words, but could offer fluid greetings and other formulaic speech. These differences may be reduced in text below, in which I aggregate responses and do not assign pseudonyms, in order to better maintain anonymity. This reduction is further complicated by the fact that interview participants had lower levels of support needs than many of the youth who are discussed by their parents, and as such my presentation of the perspectives of people with autism and quotations from thir interviews favor individuals with lower levels of support needs participating in Social/Recreational

Groups (as in the second example above). However, the majority of people with autism I met and spent time with had lower levels of support needs, and so much of this dissertation is dedicated to their experiences through presentation of participant- observation data and interviews with significant others in their lifes – staff and parents.

For this study, it was important to me to spend time with people with autism themselves, to attempt to understand their daily lives through both participant- observation and, when possible, semi-structured interviews that asked them to reflect on their lives and on autism. It was also important to me to conduct this participant- observation not only with people with lower levels of support needs, who might more easily participant in these interviews, but also with people with higher levels of support needs. This attention to daily experiences across the spectrum is relatively unique in the literature, which often focuses on interviews with parents of children with autism with higher levels of support needs, or research including only people with autism with lower levels of support needs (there are, however, notably exceptions in the ethnographic 22

literature, such as Hendrik’s 2013 book Autistic Company). The dissertation that follows therefore stands out for its attention also to participants with higher levels of support needs.

The Research Questions

The central purpose of the research I describe in this dissertation is to understand how autism is defined, managed, and experienced in the Italian context. Because my study seeks to understand how autism is defined, I did not start with a pre-established definition. However, several authoritative documents provide a starting point for understanding autism, both for myself and for my research participants. “Autism spectrum disorders” are classified as developmental disabilities in the DSM-IV-TR (APA

2000), and described by the National Institute of Mental Health as “developmental brain disorders” (National Institute of Mental Health [NIMH] 2007). Per the Diagnostic and

Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) (American Psychiatric

Association [APA] 2013:50–59), “autism spectrum disorder” is a neurodevelopmental disorder which occurs along a spectrum of severity for the two domains of social communication and restricted, repetitive behaviors. However, this fifth edition of the

DSM was released in May 2013, during my data collection period of 2012-2013.

Therefore, it is more useful to consider the fourth edition, text revision (DSM-IV-TR)

(APA 2000) and International Classification of Diseases, Tenth Edition (ICD-10) (World

Health Organization 2008). Although the DSM is extremely influential in Italian professional circles and parents’ associations (Sistema Nazionale per le Linee Guida-

Istituto Superiore di Sanità 2011; Autismo Italia n.d.) the ICD is the official diagnostic manual for the local health units (Crialesi et al. 2007:280). The ICD-10 code F84 23

includes six classifications: Autistic Disorder, Rett’s Syndrome, Other Childhood

Disintegrative Disorder, Asperger’s Syndrome, Other Pervasive Developmental

Disorders, and Pervasive Developmental Disorder Unspecified (World Health

Organization 2008). In my work, I use the term “autism” to refer broadly to all pervasive developmental disorders.

The cause of autism has been and still is much researched and discussed, but no consensus exists (National Institute of Mental Health n.d.; CDC 2014; Sistema Nazionale per le Linee Guida-Istituto Superiore di Sanità 2011). Relatedly, the way autism should be treated and managed is much contested. In the 70 years of its history, autism has also been approached as a psychological disorder, an “emotional disturbance” often attributed to family life (Bettelheim 1972; Henry 1971), a perspective that can still be encountered in the 21st century (Feinstein 2010; Grinker 2007; McDonnell 1997). Following the history of U.S. psychiatry detailed in section on, this approach lost its dominance in the

U.S. to a model of autism as somewhat in between mental retardation and mental illness treated through perceptual-motor therapies often designed for the former and behavioral therapies for the latter (Eyal et al. 2010; Schreibman 2005; see also Silverman 2012;

Thompson 2007). The definition and management of autism remains contested in the 21st century. In the United States there are professional, advocacy, and self-advocacy circles supporting variously behavioral therapies, dietary and “biomedical” interventions, and neurodiversity models (Cascio 2012; Orsini 2009; Silverman 2012). In many parts of the world there is an active contest between different approaches, perhaps most prominently psychoanalysis (Block and Cavalcante 2012; Chamak et al. 2010; Rios and Costa

Andrade in press). 24

The prevalence and scholarly interest in autism has increased dramatically in recent decades. My study contributes to the emerging social study of autism by investigating autism in a northern region of Italy. It asks: (1) How is autism conceptualized in Italy? (2) How do people labelled as autistici and their families define, manage, and experience that diagnosis? (3) How do the discourses expressed by professionals, people with autism, and their parents resonate, or not, with new biopolitical theories such as biosociality and biological citizenship? To answer these questions, data were collected using a cross-sectional ethnographic design including participant- observation at 7 autism-specific services as well as interviews with staff and other autism professionals, parents of people who attended, and the attendees themselves when possible.

Anthropologists have been interested in medical systems since the origins of the field. While early anthropologists focused on the “ethnomedicines” and

“ethnopsychiatries” of non-professionalized and, generally, non-Western medical systems (Rubel and Hass 1996; Hughes 1996), in the 20th century, scholars recognized and argued that all medicine is ethnomedicine and all psychiatry is ethnopsychiatry

(Gaines 1992a). In other words, all medical systems are social systems which are locally particular and historically contextual. At the same time, meaning-centered approaches in medical anthropology focused on the lived experiences of illness, disability, chronicity, and suffering more broadly. Scholars recognized that no matter how clear the biological basis of an illness state (e.g., Down syndrome with its cause of a singular genetic mutation), illness is defined, managed, and experienced in the social world (Rapp 2000a).

Autism does not have such a clear biological basis, and remains what Silverman (2012:6) 25

calls “a contested category” without a single clear etiology, definition, or treatment plan.

Such contested categories have long been of interest to anthropologists.

Dissertation Overview by Chapter

This dissertation emerges from several specific anthropological subdisciplines including the anthropology of biomedicine, the anthropology of autism, new biopolitical theory, and the anthropology of youth. Chapter 1 will provide an overview of these fields and the specific literatures within then most relevant to a study of autism and subjectivity.

Research question (3) emerged from a key literature on this topic, a collection of theories

I call “new biopolitical theory.” These theories – biosociality, biological citizenship, and derived terms – draw from Foucault’s original formulation of biopolitics and update it for the 21st century based on developments in the “bio” through genetics, epigenetics, neurology, and the psy- sciences of psychology and psychiatry. Several studies find all or part of these theories to be highly applicable in the case of autism-related subjectivities, both of people with autism themselves and their families (e.g., Brownlow, Charlotte and

O’Dell, Lindsay 2013; Eyal et al. 2014; Orsini 2009). Though new biopolitical theories have not been without criticism, my research focuses specifically on the geographic dimension of criticism. Research on new biopolitical theory around autism and in other situations has been geographically limited, with some scholars arguing that these theories are applicable only in western (European and North American) states and healthcare systems (Roberts 2008; Sleeboom-Faulkner 2011). This claim falsely homogenizes

“Europe and North America” into a monolithic concept. Through the exemplary case of autism, the present study investigates the applicability of new biopolitical theory in Italy, unquestionably western yet distinct from Austria and the United States where autism 26

spectrum conditions were first described. Studies of new biopolitical theory in Italy have generated mixed results (Alcano 2009; Cola and Crocetti 2011). Therefore, this study focuses on the key example of autism, to allow for a compelling implicit comparison with the existent body of literature and determine if themes in the Italian context are more concordant or discordant with findings in other settings.

Chapter 2 moves away from anthropological theory to provide the historical and cultural background to this study. It begins by introducing the social history of autism as a concept in the globalized complex of science and medicine. It then narrows this discussion to a history of autism in Italy. The remainder of the chapter is dedicated to explicating the history and current practices of managing autism in Italy. It explains what resources are available to people with autism across the life cycle, both public and private, to contextualize the presentation of collected data. Specific features of the Italian health and human services system make it a particularly apt place to study new biopolitical theory. Firstly, in the 1970s Basaglia famously initiated a world-renowned movement of de-institutionalization (Scheper-Hughes and Lovell 1986). This movement led to policies of social and educational integration, including hiring quotas for employers (Crialesi et al. 2007:275), and the laws of integrazione scolastica mandating the inclusion of students with disabilities in public schools (Canevaro and de Anna 2010).

Moreover, Italian medicine remains, for the most part, non-privatized; therefore patients lack the consumer role seen in systems like U.S. healthcare (Cola and Crocetti 2011).

Relatedly, doctor-patient interaction can be characterized by a “social-embeddedness narrative,” as in the case of non-disclosure of cancer diagnoses (Gordon 1990; Gordon and Paci 1997). For these reasons, we might expect new biopolitical subjectivities to be 27

minimized. Biosociality is exclusive by its specificity, whereas social integration is inclusive. A lack of a consumer role for patients may minimize their mobilization of lay expertise, as would paternalistic doctor-patient relationships.

Having established this background information, the remaining chapters delve into the study itself. Chapter 3 describes the research design, methods, and sample characteristics, and describes the locations in which I conducted participant-observation.

Chapters 4-6 address description aims (1) and (2), divided between the three respondent groups of professionals, parents of youth with autism, and people with autism themselves. Chapter 4 is grounded in two subsections: “What is Autism?” and “How

Should Autism by Managed?” Chapters 5 parallels this structure, and Chapter 6 maintains a similar structure with subsections entitled “What is Autism” and “Interfacing with Services.”

Chapter 7 and the Conclusion bring these groups back together. In Chapter 7, I build upon the descriptive results in Chapters 4-6 and explore explicitly new biopolitical theories, answering research aim (3). It is divided into three sections. “Defining New

Biopolitical Theory” explicates discrete themes in new biopolitical theory. “Complication

New Biopolitical Theory” investigates the relative weight of those themes in participant narratives. “Whose New Biopolitical Theory” explores their variation based on demographic factors including type of service accessed (Day, Residential, or

Social/Recreational) and characteristics of the participant/participant’s child.

In the conclusion, I present overarching themes that return to the literatures described in Chapter 1. I articulate the significance of this study for the field of anthropology by tying it to the four bodies of literature discussed in Chapter 2: the 28

anthropology of biomedicine, the anthropology of autism, new biopolitical theory, and the anthropology of adolescence and youth. Overall, I argue two main points: (1) several factors in the context of Italian health and human services and broader sociopolitical context limit the extent to biopolitical modes of engagement are present in participants’ narratives; (2) exploring the ways that parents and professionals work within the health and human services system to create opportunities for youth with autism to access rhythms and materials of adulthood can challenge and expand working definitions of adolescence in anthropology. I conclude with suggestions for future research, arguing that a self-conscious cross-cultural study of autism that approaches the subject from a meaning-centered perspective will be of interest to anthropologists, practitioners, advocates, and people affected by autism through their own diagnosis or the diagnosis of a loved one.

Chapter 1: Literature Review

Chapter Overview

In this chapter, I present an overview of the key literatures in anthropology that gave rise to this dissertation topic and research design. I review the Anthropology of

Biomedicine, the Anthropology of Autism, the body of literature I call “New Biopolitical

Theory,” and the Anthropology of Youth. These literatures help develop and frame the general research query, “how is autism defined, managed, and experienced in the Italian context?” and give rise to its three specific research questions: (1) How is autism conceptualized in Italy? (2) How do people labelled as autistici and their families define, manage, and experience that diagnosis? (3) How do the discourses expressed by professionals, people with autism, and their parents resonate, or not, with the body of literature I call “new biopolitical theory”?

The first section of this chapter reviews the Anthropology of Biomedicine. This literature shows that biomedicine is a cultural system, same as law, religion, and so forth.

Although biomedical research and practice are globalized enterprises characterized by the flow of concepts, goods, and people, this globalization does not imply homogenization.

Rather, there are local biomedicines with diverse frameworks, bioethics, and practices.

One potential avenue of difference is historically Protestant versus historically Catholic countries. Autism was first described in historically Protestant Austria and the United

States. This study seeks to understand how autism is defined, managed, and experienced in a Western biomedical system different from these countries where autism spectrum conditions were first described and later codified and globalized. This study looks at historically Catholic Italy. We don't need to contrast “biomedicine” with “traditional 30

medical systems” in order to talk about the local particularity of biomedicines. This thesis will describe some major features of the Italian biomedical and health services system as it is relevant to autism.

The second section of this chapter reviews the Anthropology of Autism. I will review the anthropology of autism, talking both about making the strange familiar (the cross-cultural study of autism) and making the familiar strange (the cultural constructivist study of autism, generally in the US). The field that Davidson and Orsini (2013) call

“critical autism studies” represents “making the familiar strange.” Closely linked to science studies, communication studies, and history, such works investigate the historical particularity of autism diagnoses and reports of an autism “epidemic.” In short, this body of literature demonstrates the value of not taking anything for granted when it comes to autism. The cross-cultural study of autism then makes the strange familiar. When it comes to autism, some scholars broaden the notion of cross-cultural to include the idea that people with autism participate in their own “autistic cultures,” which can themselves be an object of study (e.g., Davidson 2008a). There is also a growing literature on the cross-cultural study of autism as anthropologists typically mean it – the anthropology of autisms around the globe. This dissertation most contributes to this latter literature by expanding the cross-cultural study of autism, but is heavily informed by the former.

The third section of this chapter considers one important theory that makes the familiar strange when it comes to autism – the collection of theories and literature I call

“new biopolitical theory.” These theories – biosociality, biological citizenship, and derived terms – which draw from Foucault’s original formulation of biopolitics and update it for the 21st century based on developments in the “bio” through genetics, 31

epigenetics, neurology, and the psy- sciences of psychology and psychiatry. They focus on health identity and subjectivity practices. This section reviews these theories and the key concepts including biomedicalization, molecularization, somatic expertise, individual identities, collective identities and socialities, and bioeconomics. It reviews the uses of these theories in the social study of autism, as well as the geographical limits of these theories in studies addressing autism and new biopolitical theory more broadly. In doing so, this literature overlaps heavily with the anthropology of biomedicine and the anthropology of Europe through lines of local variation. Studies of new biopolitical theory in Italy have generated mixed results. Therefore, this study focuses on the key example of autism, to explore the geographical limits of new biopolitical theory with a more nuanced and sophisticated operationalization of the theory, determining if themes in the Italian context are more concordant or discordant with findings in other settings.

The fourth and final section of this chapter turns to the Anthropology of Youth.

Due to the focus of new biopolitical theories on identity and subjectivity, my research design focuses on adolescents and youth on the autism spectrum. Adolescents and youth are the best group in which to explore new biopolitical theory given that I was attempting to understand its relevance to people with autism themselves. This study draws on both the anthropology of adolescence (psychological anthropology) and youth cultures

(coming more out of British sociology). Both fields see identity as important for young people, which is why I chose to study young people (new biopolitical theories are about identity and subjectivity). My study is centered on autism-specific places, which comes more from Youth Cultures, but it attends to young people's transitions into adulthood and specific place in the life cycle, which comes more from the Anthropology of 32

Adolescence. Therefore, I argue it is fair to call this an Anthropology of Youth Study.

Questions of identity and life cycle remain central to this dissertation, which contributes to the Anthropology of Youth by exploring one culture’s efforts to create opportunities for access to adult roles for youth with developmental disabilities.

Section 1: The Anthropology of Biomedicine

Anthropologists have been interested in medical systems since the origins of the field. While early anthropologists focused on the “ethnomedicines” and

“ethnopsychiatries” of non-professionalized and, generally, non-Western medical systems (Rubel and Hass 1996; Hughes 1996), later scholars recognized and argued that all medicine is ethnomedicine and all psychiatry is ethnopsychiatry (Gaines 1992a). In other words, all medical systems are social systems which are situated within particular local and historical contexts. At the same time, meaning-centered approaches in medical anthropology focused on the lived experiences of illness, disability, chronicity, and suffering more broadly. Scholars recognized that no matter how clear the biological basis of an illness state (e.g., Down syndrome with its cause of a singular genetic mutation), illness is defined, managed, and experienced in the social world (e.g., Rapp 2000a;

Scheper-Hughes 2001).

Autism does not have such a clear biological basis. Indeed, finding the cause(s) takes up a good deal of research funding and energy. Autism remains what Silverman

(2012:6) calls “a contested category”. While Kleinman and Good (1985a:2) wrote that depression is “considered mood, symptom, and illness,” Silverman (Silverman 2012:2) writes, “autism refers to a symptom, a disorder, and a syndrome.” Such contested categories have long been of interest to anthropologists. As in Kleinman and colleagues’ 33

attention to anthropology of depression, a self-conscious Anthropology of Autism is emerging.3

While the next section turns to a detailed discussion of the Anthropology of

Autism, this section addresses the anthropology of biomedicine more broadly, demonstrating the ways in which it informs some aspects of the Anthropology of Autism as well as this particular study. It begins with a brief historical overview of the anthropological study of biomedicine, then considers in detail the problematicization of mind/body dualism in the field – and related, the distinction between the anthropological study of psychiatry and that of non-psychiatric medicine. Finally, it considers the local particularity of biomedicine as revealed by this field. This study emerges from these major points within the anthropology of biomedicine: it considers biomedicine a cultural system; it explores autism’s problematic place between mind and body and between medical fields; and it reveals the local particularity of the Italian biomedical system.

From the early days of anthropology, scholars have been interested in medical systems.

The study of “other” cultures’ medical systems became known as ethnomedicine (Hughes

1968; Rubel and Hass 1996) and relatedly ethnopsychiatry (Devereux 1980; Gaines

1992a; Hughes 1996). These systems were contrasted with “medicine” without the prefix, described at first as “modern medicine” (Hughes 1968) and then variously as “scientific medicine,” “cosmopolitan medicine,” “Western medicine,” “allopathic medicine” and later Biomedicine, all meaning “the professional medicine of the West” (Gaines and

Davis-Floyd 2004). Starting in the 1980s, anthropologists turned more explicitly towards the study of this latter system.

3 This paragraph is adapted from Cascio (2014a). 34

The use of “professional” in this context directly follows Arthur Kleinman’s

(1980) division of health care systems into “popular,” “folk,” and “professional” sectors.

The professional sector is comprised of “the organized healing professions” in contrast to the individual, family, and community practices of the popular sector as well as the “non- professional, non-bureaucratic, specialist” folk healers. Professional medicine includes not only the Western practices (biomedical and otherwise), but also professional medicines based upon system such as Chinese, Ayurvedic, and Galenic medicine, which

Bates (1995) called “scholarly medical traditions” due to their reliance on the interpretation of medical texts and Leslie (1976) called “great-tradition” medicines.

“Ethnomedicine” and “ethnopsychiatry” once referred primarily to the study of folk medicines (e.g., Blum and Blum 1965; Blum and Blum 1970; Crapanzano 1973;

Hallowell 1961; Lebra 1976). Mol and Berg (1998) argue that “biomedicine” was in fact a category invented by anthropologists as a contrast to these “ethnomedicines.” The

Anthropology of Biomedicine expands these terms to include professional medicine and

Biomedicine, studied similarly to “folk medicines” and shown to be equally “cultural.”

The distinction between (ethno)medicine and (ethno)psychiatry is fuzzy and problematic, but has often been made (Hughes 1996). This distinction relates to that between soma and psyche – body and mind – a particularly prevalent metaphor in U.S. biomedicine (Kirmayer 1988). Early studies of professional medicines of East Asia were particularly concerned with challenging this mind/body dualism through studies of somatization (Kleinman 1977; Kleinman 1982; Kleinman and Kleinman 1985; Kleinman

1988; Ohnuki-Tierney 1984), “somatopsychic” medicine (Lock 1982), and the contrasts between Western dualism and the conceptualizations of mind/body in these Eastern 35

Cultures (Marsella and White 1982). The conceptual divide between body and mind is not shared cross-culturally, nor necessarily is a division between physical health and mental health. Intellectual and developmental disabilities such as autism spectrum conditions fall somewhat between them, often considered tenuously as part of psychiatric classification schemas, yet distinct from mental illness (Eyal et al. 2010).

It was within the study of psychiatry moreso than non-psychiatric medicine that anthropologists first contrasted practices between Western countries. Townsend (1978) provided a detailed analysis of mental health conceptualizations among U.S. and German patients, clinicians, and lay youth, finding that practitioners’ perspectives were more closely tied to local lay perspectives than their fellow practitioners’ internationally. Such findings paralleled studies in psychiatry, namely Kendell and colleagues’ (1971) research on differing U.S. and British diagnostic practices using the same patient cases and standardized nosologies (135). These studies further demonstrated the importance of context to the diagnostic process, and de-homogenized the notion of Western medicine.

In the 1970s, Townsend (1978) argued that German psychiatry was more “biological” than U.S. psychiatry. Other scholars also noted the strong influence of Freudian psychoanalysis in U.S. psychiatry in the first half of the 20th century (Castel, Castel, and

Lovell 1982; Kennard 1959; Littlewood 2000). However, this influence began to wane, such that by the time Castel and colleagues’ (1982) study of U.S. psychiatry was translated from the French, three years after publication, the foreword had to note the growing replacement of the psychoanalytic model with such organic and genetic models.

This shift can be linked to three interrelated forces:

1) the use of psychotropic medication began in the 1950s (Castel, Castel, and Lovell 36

1982; Garfield 1989; Lock and Nguyen 2011), which allowed for somatic

treatment of mental illness (Castel, Castel, and Lovell 1982; Kennard 1959) and

also sparked an interest in multi-sited clinical trials (Feighner 1989);

2) research diagnostic categories were standardized in the 1970s through heavily

German (Kraepelian) systems (Young 1995) such as the “Feighner Criteria”

which led to the “Research Diagnostic Criteria” and in turn the DSM-III (Lock

and Nguyen 2011; Spitzer 1997; Winokur 1997), which represented a radical shift

from psychoanalysis – in which the specific diagnosis mattered less because the

treatment was always the same – to a medical model of mental illness (Eyal et al.

2010; Feighner 1989); and

3) deinstitutionalization in the United States (Eyal et al. 2010; Castel, Castel, and

Lovell 1982; Shorter 1997) and elsewhere in Europe (Breemer Ter Stege and Van

Heugten 1986; Salvador-Carulla et al. 2005), perhaps most famously in Italy

(Burti 2001; Burti and Benson 1996; Bollini, Reich, and Muscettola 1988; Crepet

1990; Crepet and De Plato 1983; Jones and Poletti 1986; Santone et al. 2005;

Scheper-Hughes and Lovell 1986), began in the 1950s and a variety of treatments

proliferated to replace this one-size-fits-all approach, leading to greater

importance of diagnostic specificity (Eyal et al. 2010).

These changes ultimately led to the reclassification of psychiatry as even less distinct from medicine, often as biological psychiatry based on the notion of mental illnesses as brain diseases (Buchman, Illes, and Reiner 2011; Gaines 1992b) or simply biomedical psychiatry, psychiatry practiced as a part of biomedicine (Fabrega, Jr. 1993). Since then, anthropological study of comparative biomedicines, including psychiatries, has 37

blossomed.

The principle framework for the anthropology of biomedicine is interpretive. The interpretive approach to biomedicine sees medical knowledge as problematic. It rejects the notion that diseases are “natural” objective givens, sees ethnomedical knowledge as culturally and historically situated, and grounded in experience-near realities (Gaines

1991). Important concepts in the interpretive approach to biomedicine include

Kleinman’s (1977; 1987; 1988) notion of disease/illness, Kleinman’s (1980) Explanatory

Models, Good’s (Good 1977; Good and Good 1982; Good 1994; Good and Good 1985)

Semantic Illness Networks, and Gaines’ (1991) Sickness Histories. These approaches explicitly brought together ethnomedicine and ethnopsychiatry, seeing the organic/psychological difference as constructed and the concepts as equally applicable to psychological and physical disease entities (Kleinman 1980). Later research has shown that just as depression, neurasthenia, and PTSD can be read as cultural constructs, so too can atherosclerosis (Mol 1998; Mol 2000), asthma (Willems 1998), and fetal alcohol syndrome (Armstrong 2003).

While the interpretive approach to biomedicine resists the notion that diseases are objective physical entities onto which culture is added, this is not because they naively disregard the physical world. Rather, the anthropology of biomedicine has been heavily concerned with bodies through two concepts: the mindful body and local biologies. The

“mindful body” alludes to the previously problematicization of mind/body dualism;

Scheper-Hughes and Lock (1987) outline instead the three bodies: individual, social, and body politic. This work has kept embodiment a central concern of much later medical anthropology. “Local biologies” refers to both the simple fact that the entanglement of 38

biological and social processes leads bodies to vary cross-culturally and therefore universalist claims about how the body works are suspect (Lock and Nguyen 2011; Lock and Kaufert 2001) – a point also made about human psychology (Henrich, Heine, and

Norenzayan 2010) – and also to the observation that not only biomedicines but the biologies on which they are based vary cross-culturally (Gaines 2005; Lock 1995).

The textbook history of Western Medicine holds that “rational” medicine was invented by the Greeks, codified by Hippocrates. Anatomical developments occurred in

Alexandria, and the Greek Galen working in Rome set the standard through the Middle

Ages. After a period of limited professional medicine in early Christianity, translations in

Italy led to the Ars medica in the 11th century. Medical education began at Salerno, Italy, and university medicine began in Paris and Montpellier, France in the 13th century. Italy,

France, and Spain dominated the field of medicine for several centuries as the traditions spread across continental Europe and to England, where the move towards a modern, secular medicine was symbolized in Harvey’s description of blood circulation. France,

Germany, the U.S., and the U.K. became dominant in the era of germ theory (Loudon

1997). The hospital system emerged in France and Germany and then spread across

Europe, the United States, their colonies, and elsewhere (Van Der Geest and Finkler

2004). The development of medicine and science are closely intertwined (Crosland 1976;

Huff 2003), although the directness of their link has been problematized (Canguilhem

1978; Gifford 1986; Keating 2003; Vogel and Rosenberg 1979). After World War II, scientific research practices were largely standardized across Europe following the U.S. form, which has been called hegemonic (Krige 2006). Science and technology are therefore “global assemblages” (Collier and Ong 2005), networks of actors from diverse 39

locales working under the same assumptions and contributing to the same project (Latour

1993). Science and medical practices are mobile concepts in a globalized world, where understanding the local variations in concepts of self and body affect definition and practice (Crowley-Matoka and Lock 2006). As this brief history demonstrates, Italy holds a clearly central position in the history of Western medicine. This dissertation study of autism and medicine in Italy will contribute to the anthropological project of demonstrating that the locally particularly and historically contextual reality of biomedicine.

The Anthropology of Biomedicine has addressed the local particularity of

Western Medicines, often in a comparative framework. Scholars have described the specific cultures of medicine and psychiatry in the U.S. (Young 1995), France (Dodier

1998; Gaines and Farmer 1986; Sargent and Larchanche 2007), Germany (Hirschauer

1998), the Netherlands (Oudshoorn and Somers 2007; Vermeulen 2004), and Italy

(Gordon 1990; Gordon and Paci 1997; Tanassi 2004; Yamaguchi 2004). They have contrasted childbirth in the U.S., Holland, and Sweden (Jordan 1993); abortion in former

East and West Germany (Erikson 2003); IQ testing (Carson 2004), psychiatric diagnoses

(Gaines 1992b; Lloyd 2008), and leukemia/lymphoma diagnoses (Keating and

Cambrosio 2000) in the U.S. and France; drug regulation in the U.S., U.K., and West

Germany (Bodewitz, Buurma, and de Vries 1987); autism “brain policies” in the U.S.,

U.K., and Canadian (Baker and Stokes 2007); somaticization in Belgium and medicines closer to the Mediterranean Sea (Van Moffaert and Vereecken 1989); and genetic testing in Cyprus and Germany (Beck and Niewohner 2009). They have found overarching similarities despite local particularities in MRI technology in Germany, Switzerland, and 40

the U.S. (Burri 2007).

One important axis of contrast – the one most germane to this thesis – has been that of Northern vs. Southern or Mediterranean Europe (Gaines 1982; Markus and

Kitayama 1991). Within the Anthropology of Europe, the concept of a Mediterranean cultural area has been contested, (de Pina-Cabral 1989; Herzfeld 1984), but remains useful when used with greater reflexivity and local particularity (Bromberger 2006). Due to the “rebordering” of the Mediterranean Sea as a boundary between regions rather than a unifier (Suárez-Navaz 2005), this study takes a Southern European or Mediterranean

European perspective in selecting Italy as a potentially rich contrast with the Northern

European origins of the concept of ASD. Within political science, scholars have further identified regional differences in social models within the EU. Aiginger and Leoni (2008) identify Austria as a “continental corporatist,” emphasizing “employment as the basis of social transfers”; whereas they identify Italy as “Mediterranean model,” in which “the low level of social transfers is partly counterbalanced by the strong supportive role of family networks.” These models impact how healthcare and social services function.

The history of ASD reveals a strong influence of Austrians: Leo Kanner, who developed the idea of “autistic disorder”; Hans Asperger, for whom Asperger’s Syndrome is named; and Bruno Bettelheim, who ran a famous school for children with autism on the basis of the theory that autism is caused by emotionally distant “refrigerator mothers.” One Italian anthropologist therefore calls Asperger’s Syndrome il male austriaco, “the Austrian disease” (Cola 2012). This project seeks to explore how this Austrian and U.S. diagnostic category is defined, managed, and experienced in a Southern/Mediterranean European context. 41

The Anthropology of Biomedicine demonstrates that despite the globalization of medical research and practice, local particularly remains paramount to the anthropological study of biomedicine. Not all biomedicines are identical or interchangeable, due to different conceptualizations of the body, different conceptualizations of the psyche/soma divide, different bioethics, different legal systems, different religious influences in biomedicine, different organization of subspecialties, different biotechnologies, and so on. Key features in the Italian medical system will be discussed in more detail in Chapter 2.

The Anthropology of Biomedicine, and its overlap with the Anthropology of

Europe, led me to focus on autism in Italy due to the presence of these locally particular features and the potential for substantial contrast between Italian biomedicine and the biomedicines of Austria and the United States where autism was first described. This dissertation will contribute to the Anthropology of Biomedicine through its description of the local features of the Italian context as they relate to autism. It will demonstrate that the local particularity of the Italian medical system impacts the way people with autism and their families define, manage, and experience this diagnosis.

Section 2: The Anthropology of Autism

In previous work (Cascio 2014a), I argue that the Anthropology of Autism is characterized by, “1) A holistic view that considers the place of autism in the larger sociocultural context,” “2) Attention to the local and historical particularity of the concept of autism,” “3) Attention to the lived experience of people with autism and those close to them” (Cascio 2014a:307). It has become a maxim in anthropology to say that the field “makes the familiar strange and the strange familiar.” Two threads within the 42

anthropological study of autism encapsulate these two trends in anthropology. The field that Davidson and Orsini (2013) call “critical autism studies” represents “making the familiar strange.” Closely linked to science studies, communication studies, and history, such works investigate the historical particularity of autism diagnoses and reports of an autism “epidemic.” In short, this body of literature demonstrates the value of not taking anything for granted when it comes to autism. The cross-cultural study of autism then makes the strange familiar.

With respect to autism, some scholars broaden the notion of cross-cultural to include the idea that people with autism participate in their own “autistic cultures,” which can themselves be an object of study (e.g., Davidson 2008a). There is also a growing literature on the cross-cultural study of autism as anthropologists typically mean it – the anthropology of autisms around the globe. This section briefly reviews both trends, and situates my study within the literature.

Critical Autism Studies

Like earlier literatures on the anthropology of depression (Kleinman and Good

1985b) and schizophrenia (Jenkins and Barrett 2004), the emergent anthropology of autism unpacks the ways in which the term cannot be taken for granted as an objective and universal entity, but must be understood as culturally and historically constructed as are all illness experiences. Autism and the broader Autism Spectrum Disorders (ASD) also share characteristics of Estroff’s “I am” illnesses (Estroff 1993) and Dumit’s “socio- medical disorders” (Dumit 2000). The construction of ASD has been addressed rather by sociologists (Eyal et al. 2010) and communication scholars (Nadesan 2005). Nadesan

(Nadesan 2005) argues that ASD are what Hacking calls “niche disorders.” Hacking 43

vehemently disagrees (Hacking 2010),4 although he considers autism a “human kind”

(Hacking 1995) or more recently a “moving target” (Hacking 2007) that is “made up”

(Hacking 2006b).

The social scientific study of autism addresses a variety of themes and has prompted several reviews in the early years of the 21st century (Cascio 2014a; Silverman

2008a; Solomon 2010). Solomon’s (2010) review of autism and the anthropology of the senses identifies three major contributions of anthropology to the study of autism: 1) anthropology conceptualizes intersubjectivity and empathy in a practice-based way, not assuming the anthropologist preternaturally can think like the people he or she is trying to study, but rather stressing careful attention and observation; 2) anthropology takes a hermeneutic, interpretive stance focused on lived experience; 3) anthropology’s meaning- centered ethnographic methodology attends to everyday practices. Silverman’s (2008a) review of such social science “fieldwork on another planet” identifies four major areas of study that such scholarship has addressed: 1) Autistic cultures 2) Theorizing treatment

(perceptions of efficacy change over time. Should study “how particular therapies emerge as preferred options for particular contexts, how techniques are designed, and what types of acquired expertise are required to successfully administer therapies.” 3) autism and subjectivity. 4) Social movements. In an edited volume, Davidson and Orsini describe the central features of their “critical autism studies” as a careful attention to power relations, advancement of enabling (not deficit-focused) narratives of autism, and commitment to inclusive and non-reductive frameworks (Davidson and Orsini 2013:12).

4 I respectfully disagree with his disagreement (Cascio 2013), for reasons that will be addressed more fully in Chapter 4. 44

This section respects the insights of these former reviews while addressing the contributions I find in the social science literature on autism before and since these works. It addresses specifically contributions in the critical social history of autism; the study of disability and society with its attention to power relations; studies of the lived experience of both parents and people with autism; the study of autistic cultures, communication, and sociality; and the study of autism as a source of identity for both those on the spectrum and their families.

Anthropologists and other social scientists have produced several detailed social histories of autism, focused primarily in the United States. These works have demonstrated the way that the emergence of autism is linked to broader historical and intellectual trends. Book length manuscripts provide detailed accounts of the emergence of the autism label from particular historical trends including the emergence of childhood psychology and compulsory education (Nadesan 2005); deinstitutionalization (Eyal et al.

2010); and scientific movements and technology (Silverman 2012). Grinker (2007) traces the emergence of an autism “epidemic” due to changing definitions and understandings, but also attempts to gather what little information existed at the time on autism cross- culturally. His work will be discussed also in the following section on cross-cultural autism studies. Shorter works have similarly unpacked the role of broader economic forces (Bumiller 2013; Nadesan 2013). They have also presented ethnographic research on scientists and practitioners (Cascio 2015a; Eyal et al. 2014; Fitzgerald 2014; Lappé

2014). As I observe elsewhere (Cascio 2014a), these texts show “that progressive narratives of the ever onward march of science do not accurately represent the changing trends in the treatment and management of autism. Rather, what treatment programs and 45

research initiatives take hold depends on the larger scientific-political context.” These social histories of autism science, scientists, and treatment serve as one of the greatest contributions to the making strange of familiar discourses about autism by placing science, scientists, and treatment in historical context rather than considering them

“objective.”

Anthropologists and other social scientists have also studied autism in the context of contemporary and historical relationships between “disability and society,” between people identified as disabled and the broader society that identifies them as such. Several studies address the impact of broader gender politics on aspects of autism, which is overwhelmingly diagnosed in boys and men (Fombonne 2005). Some argue that this diagnostic difference may reflect differences in the way autism manifests based on socialization (Davidson 2008b) or is observed by parents and physicians with gendered expectations, drawing on and perpetuating gender stereotypes (Davidson 2008b; Gillis-

Buck and Richardson 2014). Moreover, girls and women with autism may face more challenges “enacting normalcy” in a non-autistic world based on gender stereotypes and expectations such as participating in gossip talk (Davidson 2008b). Similar observations have also been made for diagnostic differences between different racial or ethnic groups

(Begeer et al. 2009; Liptak et al. 2008; Mandell et al. 2007; Mandell et al. 2009) or socioeconomic status (Liptak et al. 2008) in several contexts.

Many studies in this category address the idea of inclusion for people with autism in peer and community groups such as school, work, and recreation. While many studies in education and public policy address these topics using metrics relevant to those fields

(Boutot and Bryant 2005; Carter et al. 2008; Owen-DeSchryver et al. 2008; Symes and 46

Humphrey 2010), there are also several experiential quality studies that focus on the experiences of people with autism with such peer and community settings (Humphrey and Lewis 2008; Humphrey and Symes 2011; Ochs et al. 2001). Demographic differences come into play here as well, as life cycle expectations in the United States in particular are often based on specific white middle-class values of autonomy and independence that do not apply to all cultural groups within the United States and elsewhere (Magaña and Smith 2006; Smith and Routel 2009). Another major area of study under the rubric of disability and society is that of representation. Several scholars have analyzed the representation of autism and people with autism in various media

(Hacking 2009b; Hacking 2010; Murray 2008; Osteen 2008). Others have focused on specific metaphors describing people with autism as various tropes such as robots or empty fortresses (Broderick and Ne’eman 2008; Danforth and Naraian 2007; Dinishak and Akhtar 2013; Fein 2011; Hendriks 2012; Waltz 2003). Studies in the category of disability and society challenge naturalizing and individualizing narratives of deficit located in the person with the diagnosis, consideration interactions between the individual and the broader society that impact identification of disability, social inclusion of the person so identified, and representation of the disability and the person so labelled within the broader context.

The social study of autism, and especially the anthropology of autism, has studied the topic not only at these macrological levels, but also “on the ground,” at the level of lived experience. They employ “experience-near” (Geertz 2000) strategies to understand the daily lives and subjectivities of people affected by autism – both those with the diagnosis and their families. Studies with parents of people with autism address various 47

facets of their use of scientific knowledge, including decision-making about having future children based on genetic responsibility (Raspberry and Skinner 2007; Raspberry and

Skinner 2010) and doubting vaccine safety (Kaufman 2010); parents’ relationships with professionals and service providers (Valentine 2010); their experiences as research participants (Lappé 2014); and their grassroots activism (de Wolfe 2014; Ryan and Cole

2009) Studies with siblings have explored their definitions of autism and sibling relationships (Hwang and Charnley 2010; Olney and Kim 2001; Orsmond, Kuo, and

Seltzer 2009). Studies with people with autism themselves have explored how they described themselves, understood disability, and whether or not they identified as having a disability (Cola 2012; Daley and Weisner 2003; Humphrey and Lewis 2008; Jones

2012; Shtayermman 2009), as well as their experiences with autism pride communities

(Bagatell 2007; Bagatell 2010). In considering the lived experiences of both people with autism and their families, gender remains a prominent concern. Not only is autism most often diagnosed in boys and men, as discussed above, much of the responsibility for caretaking falls on women – mothers and other women. Several texts have considered this gendered labor (Bumiller 2009; Silverman 2012). This work has explored “‘autism moms’ and dads who ‘fix things’ (Silverman 2012), speakerphone dads (Grinker 2007), and other gendered tropes of lived and performed experience including refrigerator mothers, mother warriors, autistic computer geeks, and autism dads (Jack 2014). This work reflects the anthropological commitment to understanding autism, and all of human experience, on the ground and enmeshed in its social context and social relationships.

These scholars who study people with autism take a variety of perspectives. One perspective which I highlight here is especially important to the anthropology of autism: 48

the study of “autistic cultures” and related autistic sociality and autistic communication.

These studies seek to understand autistic ways of being. They tend to start from a presumption of competence (Biklen and Attfield 2005), recognizing people with autism as social and communicative agents despite stereotypes to the contrary. In this way, they recognize autism as a way of being, in some ways analogous to the different cultures anthropologists have always studied. However, instead of being unified by geography, religion, or lineage, people with autism are unified as a type of imagined community

(Anderson 2006) linked by features of autism. The most prominent, but certainly not only, way of understanding this grouping is neurological – autism is a form of

“neurodiversity” that links people with autism together into a cultural group, different from “neurotypicals” who do not share these neurological features (Baker 2006; Boundy

2008; Brownlow 2010; Bumiller 2008; Cascio 2012; Fenton and Krahn 2007; Glannon

2007; Hart 2014; Kapp et al. 2012; Ortega 2009; Valtellina 2011). Studies of autistic cultures have researched groups of people with autism both online (Davidson 2008a) and offline (Bagatell 2007; Bagatell 2010), though both highlighting the role of the internet in facilitating this community-building (see also Davidson 2008b). Several studies also address a notion of “autistic sociality” and communications styles, not necessarily social and communication deficits, particularly through the UCLA Ethnography of Autism

Project (Kremer-Sadlik 2004; Ochs et al. 2001; Ochs et al. 2004; Ochs and Solomon

2004; Sirota 2010; Sirota 2004; Solomon 2004; Solomon 2008; Sterponi 2004; Sterponi and Fasulo 2010). This project focuses on the linguistic and communication styles of people with autism, it aligns well with the agendas of prominent autism researchers with autism such as Michelle Dawson who contribute to the study of autistic intelligence 49

(Dawson et al. 2007; Rogers and Dawson 2009; Soulières et al. 2011). Indeed, ‘insider’ narratives, in a sense, have also played a role in the anthropology of autism as scholars on the autism spectrum also write about their experiences (Prince 2010; Prince Eddings

2013). These studies elaborate a non-deficit narrative of autism, as Davidson and Orsini advocate “critical autism studies” do, and rethink the possibilities for anthropological engagement (Solomon and Bagatell 2010). They provide fertile ground for understanding the lived experience of people with autism.

The presence of autism as an identity has also been widely documented. Autism identity politics can be compared to previous associations such as the Lesbian Gay

Bisexual Transgrender and Questioning community (Davidson and Henderson 2010) and

Deaf Culture (Davidson and Henderson 2010; Friedner 2010; Senghas and Monaghan

2002). Autism serves as an identity not only for those with the diagnosis, but also their family members, as part of what Stuart Murray (2008) calls “the family with autism.”

However, not all parents and patients access identity narratives equally. Juliette de Wolfe

(2014) employs the concept of “identification” (Lave and Wenger 1991), demonstrating that parents may identify more or less with autism – or with the role of being an “autism warrior” and having an “autism lifestyle” – over different times and places. Often, scholars discussing autism as an identity employ the frameworks of biosociality and biological citizenship, which will be discussed in more detail in the next section on “New

Biopolitical Theory.” For now, we turn to the other half of the anthropology of autism: making the strange familiar through the cross-cultural and global study of autism around the world.

Cross-Cultural Studies of Autism 50

The bulk of Anglophone social science literature on autism has focused on major

Anglophone countries: the United States, Canada, United Kingdom, and Australia. A few works have offered comparisons between these countries, particularly with respect to policy (Baker 2007; Baker and Steuernagel 2009; Baker and Stokes 2007). However, a growing cross-cultural literature is emerging. An early text compared parental understandings of autism between Brazil, Greece, Italy, and Germany (Probst 1998). In

2007, anthropologist Roy Richard Grinker’s book Unstrange Minds provided an overview of autism around the globe, demonstrating cultural variation in how it was identified, diagnosed, and treated. He presented information on the U.S. and other countries including South Africa, South Korea, and India. Anthropologists and other scholars have investigated autism with particular attention to local particularity in Brazil

(Block and Cavalcante 2012; Rios and Costa Andrade in press), Cuba (Sotgiu et al.

2011), France (Chamak 2008; Chamak et al. 2010; Chamak and Bonniau 2013; Orchard

2013), India (Daley 2002; Daley 2004; Daley and Sigman 2002; Mehrotra and Vaidya

2008; Sarrett 2015), Israel (Bilu and Goodman 1997; Vogel and Reiter 2003; Vogel and

Reiter 2004), Italy (Cola 2012; Cola and Crocetti 2011; Russo, Capararo, and Valtellina

2014; Sotgiu et al. 2011; Valtellina 2011; Valtellina 2015), Morocco (Haldane and

Crawford 2010; Hart 2014), Singapore (Poon 2011), South Africa (Grinker et al. 2012), and South Korea (Grinker and Cho 2013; Grinker et al. 2012; Kang-Yi, Grinker, and

Mandell 2013).

These studies have highlighted several importance differences between the way autism is defined, managed, and experienced in different social contexts. Scholars have explored differential diagnoses, such as the use of Reactive Attachment Disorder rather 51

than autism diagnoses in South Korea (Grinker 2007), as well as new definitions such as

South Korean “border children,” the term mothers and teachers use to describe children with symptoms of autism spectrum disorder who are academically successful (Grinker and Cho 2013). They have also explored the different salience of various symptoms in different contexts (Daley 2004). Autism is also managed differently in different contexts.

Several studies have focused on the transition from psychoanalysis to a medical model of autism, particularly in France (Chamak 2008; Chamak et al. 2010) and Brazil (Block and

Cavalcante 2012; Rios and Costa Andrade in press), as well as other aspects of professionals’ definitions (Daley and Sigman 2002). They have also looked at parents’ and patients’ experiences with getting diagnoses (Chamak et al. 2010; Cola 2012; Daley

2002) and with different forms of disability rights movements shaped by local contexts

(Chamak 2008; Chamak and Bonniau 2013; Orchard 2013). They have student parent- child interactions in a variety of contexts (Hart 2014; Sarrett 2015; Sotgiu et al. 2011).

Other studies have looked at the way people with autism fit into religious traditions, specifically Orthodox Judaism, by exploring the role of facilitated communication in making meaning of autism (Bilu and Goodman 1997), the meaning of Bar/Bat mitzvahs to youth with disabilities (Vogel and Reiter 2003) and their parents (Vogel and Reiter

2004).

Social science research on autism in Italy, though limited, has addressed several important aspects of the field that impact this dissertation. Scholars comparing Italy and

Cuba found that Italians with autism had larger social networks due to “technical figures,” such as therapists (Sotgiu et al. 2011). Anthropologist Mirna Cola (Cola 2012;

Cola and Crocetti 2011) has conducted ethnographic research with people with 52

Asperger’s Syndrome participating in patients’ organization, exploring the various meanings of the Asperger’s label while noting that people with Asperger’s in her study did not necessarily use Asperger’s as a primary identity label. Other studies have explored the empowerment narratives around Asperger’s in the country (Valtellina 2011).

Indeed, the emerging field of Italian Disability Studies (D’Alessio 2011; Medeghini and

Valtellina 2006) has contributed much to the Italian social study of autism, including the introduction of neurodiversity perspectives (Narzisi and Muratori 1981; Valtellina 2011) and attempts to trace the history of people with autism to institutions prior to deinstitutionalization (Russo, Capararo, and Valtellina 2014). Finally, an unpublished thesis explicates central themes in autobiographical novels by parents of children with autism, noting that they all seek to give encouragement to parents though in very different ways; and that thus far autobiographical novels have been the only genre of autism novels in Italy (no autism fiction, for example) (Ravanelli 2013).

Section 3: New Biopolitical Theory

One approach that appears time and time again in the social study of autism is that which I call “new biopolitical theory.” Social scientists have a long a history of interest in the impact of medical institutions on individuals’ identity and subjectivity – and indeed on the relationships between institutions and individuals broadly. This study considers subjectivity “the agonistic and practical activity of engaging identity and fate,” specifically “the inner lives of subjects” as it relates to conceptualizations of self and identity, conceptualizations of autism, and the relationship between the two (Biehl, et al.

2007:5). Anthropologists have approached health-related subjectivities in many ways

(e.g., Biehl, et al. 2007; Whyte 2009). One prominent field of study draws on Foucault’s 53

concepts of biopower and biopolitics. In History of Sexuality Volume 1 (1990), Foucault describes two poles of “biopower”: “anatomo-politics,” referring to clinical interaction with individual bodies; and “biopolitics” referring to state administration of populations of bodies. Both techniques use the body as source of political control. This description of biopower was based upon the technologies of the time, particular the medical institutions

Foucault so influentially theorized (Foucault 1994; Foucault 2006). “New biopolitical theory” is “new” with respect to Foucault’s biopolitical theories because of the changes in technology described in this subsection.

Scholars have identified autism as an exemplary case of such theories, specifically biosociality (Buchman, Illes, and Reiner 2011; Friend 2014; Navon and Eyal 2014;

Silverman 2008b), biological citizenship (Orsini 2009), geneticization (Bumiller 2009), and biopolitical subjectivities about the brain (Fein 2011; Ortega and Choudhury 2011), although Silverman recants this position in her later work (Silverman 2012). Greenhough

(2011) argues that autism subjectivity goes “beyond” biological citizenship to the idea of autistic culture or identity. She discusses how a biological citizenship approach might view famous scientist with autism Temple Grandin, compared to how she says she views herself. This literature has found social organization around autism as exemplary of new biopolitical modes of engaging, both among individuals so diagnosed (Fein 2011; Friend

2014; Orsini 2009; Ortega 2009; Ortega and Choudhury 2011; Silverman 2008b) and their parents (Friend 2014; Orsini 2009; Raspberry and Skinner 2010; Silverman 2008b).

Others have argued that while some parents of children with autism embrace Rose and

Novas’s (Rose and Novas 2005) activist role, others find parental engagement models overwhelming (Valentine 2010). 54

In order to resolve the issue of new biopolitical theory’s applicability, this section breaks down the study of new biopolitical theory. It begins by reviewing the emergence of these new theories in the wake of the Human Genome Project and the Chernobyl disaster. It then explores four specific themes: molecularization, somatic expertise, individual identities, and collective identities and socialities. It also addresses criticisms and limitations of these theories that emerge from the literature. This section then turns, as did Section 2, to the cross-cultural study of new biopolitical theory. It explores its geographical limits.

Overview of New Biopolitical Theory

In new biopolitical theory, Foucault’s concept of biopolitics has been updated to account for changes in the life sciences that occurred in the late 20th century, namely the focus on genetics and molecular aspects of human bodies (Kay 1993; Keller 2000; Simon

2008). After the Human Genome Project, scholars have argued that nature and society are both artificial, are both constructs, and both subject to human control (Cambrosio,

Young, and Lock 2000; Jasanoff 2004; Rabinow 1999; Rheinberger 2000). This molecularization of life led therefore a reformulation of Foucault’s biopolitics into a

“politics of life itself” (Rose 2007a; critiqued in Braun 2007; Raman and Tutton 2010).

The new biopolitical theory encompasses Petryna’s “biological citizenship” (Petryna

2002) and Rabinow’s “biosociality” (Rabinow 1999). The term biological citizenship comes from Adriana Petryna’s study of Chernobyl survivors in the Ukraine, and has been expanded by Nikolas Rose and Carlos Novas, who describe it as, “All those citizenship projects that have linked their conceptions of citizens to beliefs about the biological existence of human beings, as individuals, as families and lineages, as communities, as 55

population and races, and as a species” (Rose 2007:440). It includes not only the imposition of citizenship obligations on individuals (responsibilities) but also the individual enactment of that citizenship upon the state (rights). It is both individualizing and collectivizing. The individualizing aspect of biological citizenship encompasses a new somatic expertise in which individuals must “know and manage the implications of one’s own genome” and body (Rose 2007:134). The collectivizing aspect is biosociality, which refers to “the likely formation of new group and individual identities and practices” (Rabinow 1999:413). The term comes from Paul Rabinow’s wordplay and reversal of “sociobiology” in the 1990s. He states:

If sociobiology is culture constructed on the basis of a metaphor of nature, then in biosociality nature will be modelled on culture understood as practice. Nature will be known and remade through technique and will finally become artificial, just as culture becomes natural [….] This remark involves a large number of issues, but the only one I will underline here is the likely formation of new group and individual identities and practices arising out of these new truths. There already are, for example, neurofibromatosis groups who meet to share their experiences, lobby for their disease, educate their children, redo their home environment, and so on. That is what I mean by biosociality. I am not discussing some hypothetical gene for aggression or altruism. Rather, it is not hard to imagine groups form around the chromosome 17, locus 16,256, site 654,376 allele variant with a guanine substitution. Such groups will have medical specialists, laboratories, narratives, traditions, and a heavy panoply of pastoral keepers to help them experience, share, intervene, and “understand” their fate. (Rabinow 1999:413)

Although these terms arise from specific historical moments – the tragedy of Chernobyl and the optimism of the Human Genome Project – the theories have had staying power and have been expanded to include theories such as genetic citizenship, therapeutic citizenship, pharmaceutical citizenship, neurochemical and neurostructural selfhood, and so on. In short, this literature describes new modes of citizenship engagement (both rights and responsibilities) and new forms of collective and individual subjectivities and identities. 56

Governmentality is a larger theory that umbrellas over new biopolitical theory.

Particularly, several authors connect biological citizenship with neoliberalism and the neoliberal subject (Ajana 2012; Briggs and Hallin 2007; El-Haj 2007; Sleeboom-

Faulkner 2011). Along with biomedicines and biosocialities, I argue we should dehomogenize our discussion of neoliberalism and talk about neoliberalisms. While

Sleeboom-Faulkner (2011) links new biopolitical theory to western neoliberalism, insights from the Anthropology of Europe and the Mediterranean show that it is more appropriate to talk about western neoliberalisms in the plural.

With new biomedical practices comes a new role for biomedical patients. Rose

(Rose 2007a) identifies a shift from Parsons’ sick role (Parsons 1951) to the protoprofessional role of patients as collaborators partly responsible for their own wellness. This protoprofessionalism is linked to the role of associations in directing research, with 1980s gay organizations’ AIDS activism as template (Rose and Novas

2005), as patients and their caretakers become collaborators in the medical-research industries (Bach 1998; Baggott and Forster 2008; Heath 1998; Huyard 2009; Rabeharisoa and Callon 2004). The gay rights movement and AIDS activism are themselves both modelled on the U.S. Civil Rights movement of the 1960s, whose influence on later identity politics movements – including those related to medicine – should not be under stated. The new biopolitics, however, is differentiated from the study of identity politics more broadly through the consideration of biopower (Braun 2007; Whyte 2009). Patients also have the opportunity to take this role sooner, through genetic susceptibility and presymptomatic diagnoses (Rose 2007b; Rose 2007a).

In addition to autism, scholars have explored the applicability of new biopolitical 57

theory to a variety of conditions understood as biological. They have looked at medical conditions and labels such as hearing impairment or membership in the “Deaf” community (Friedner 2010), HIV/AIDS (Alcano 2009; Beckmann and Bujra 2010;

Cassidy 2010; Cataldo 2008; Cuevas Valenzuela and Pérez Zamora 2011; Misra 2006;

Robins 2006; Wilhelm-Solomon 2013), Hepatitis C (Orsini 2008), mild sickle cell anemia (Fullwiley 2010), inherited blood disorders (Beaudevin 2013), multiple sclerosis

(Block et al. 2011), breast cancer (Gibbon 2008), Alzheimer’s (Burke 2008), chimerism

(Norton and Zehner 2008), gambling addiction (Vrecko 2008) and a variety of rare genetic disorders (Fitzgerald 2008). They have also studied the biopolitics of medical products and services such as circumcision (Carpenter 2010), Viagra (Asberg and

Johnson 2009), cryonics (Romain 2010), genetic testing (Curnutte and Testa 2012;

Ducournau et al. 2013; Felt and Müller 2011; Lee and Crawley 2009; Sommer 2010), and new reproductive technologies (Bharadwaj 2008; Brekke and Sirnes 2011; Nahman

2008); as well as the experiences of research participants (Johnson 2013). Several scholars have focused on the biomedicalization of race under the new biopolitics (Bliss

2011; El-Haj 2007) as well as the way race (El-Haj 2007) and gender politics are or risk being reproduced. Another aspect of subjectivity under new biopolitical theory is the responsibility of optimization, being the best possible such as through “frequent sipping” of bottled water (Race 2012). They have also explored the biopolitical subjectivities outside of realms traditionally considered biomedical, such as sexuality (Martucci 2010), climate change (Whitington 2013) biometrics (Ajana 2012; Mordini and Ottolini 2007), and the microbiopoliticals of raw milk (Kurtz, Trauger, and Passidomo 2013; Paxson

2008). Scholars have also linked biosociality and biological citizenship to a whole realm 58

of bioeconomics, the treatment of human tissues as goods and their mobility, particularly in cases such as biobanking (Mitchell 2012), and the flow of information through biocommunicability (Briggs and Hallin 2007). Through a close reading of this literature, I have identified four major themes: molecularization, somatic expertise, individual identities, and collective identities and socialities. I turn to these themes in these following paragraphs.

Molecularization

Molecularization is a “‘style of thought’ of contemporary biomedicine” which

“envisages life at the molecular level, as a set of intelligible vital mechanisms among molecular entities that can be identified, isolated, manipulated, mobilized, recombined” and so on (Rose 2007:5-6). It refers to the conceptualization of life at the minute level of genes, proteins, and enzymes (Rose 2007a:12), related to the discoveries of molecular biology (Kay 1993).

There are several forms of molecularization, perhaps most prominently geneticization (Lippmann 1991). As Lippman explains:

Today’s emphasis on genetic causes and genetic understanding seems to be part of a more expansive process I have called ‘geneticization’ (and have begun to describe elsewhere). Those in charge of health-related naming and helping activities increasingly now reduce differences between individuals to their DNA codes, define most disorders and behaviors, as well as physiological variations, as at least in part genetic in origin, advocate the adoption of interventions that employ genetic technologies to manage problems of health and, in general, (incorrectly) equate human biology (humanity?) with human genetics, implying that the latter acts along to make each of us the organism she or he is. (Lippmann 1991:85)

Geneticization is also linked to subjectivities based around genetics, including genetic citizenship (Heath, Rapp, and Taussig 2004) and genetic responsibility (Raspberry and

Skinner 2010). Furthermore, “Packaging human health problems – as well as a whole 59

range of human variability – as ‘genetic’ blurs the distinctions between disease and illness, disability and handicap” (Lippmann 1991:87). The blurring of this distinction is particularly prominent in autism, which occupies an unusual niche somewhere between mental illness and mental retardation (Eyal et al. 2010), somewhere between psychology, psychiatry, neurology, and biomedicine.

Geneticization clearly emerged from the optimism of the Human Genome Project.

Particularly after the Human Genome Project failed to bring about the momentous change in our understanding of the human condition that its early proponents and detractors anticipated, some scholars have found this discourse limited (Lock 2008; Lock, Lloyd, and Prest 2006). Eyal and colleagues (2014; Hart 2014) argue that several aspects of autism research, treatment, and advocacy, especially the “low tech” quality of many interventions strategies, challenge biomedicalization and geneticization. However, as recently as 2009, Bumiller identified important trends in these domains that strongly followed biomedicalization and geneticization even in the absence of clarity about autism genetics. Hedgecoe (2001) uses the term “enlightened geneticization” to refer to scientific discourse that prioritizes genetics while allowing for a role for non-genetic factors and not remaining limited to the notion of a “gene for” a disease or a straightforward discourse of “genetic diseases.”

Molecularization also encompasses several neurological discourses, particularly the concept of mental illnesses as “brain diseases” (Buchman, Illes, and Reiner 2011;

Rose 2007a). As Rose explains (Rose 2007a:220), “In this way of thinking, all explanations of mental pathology must “pass through” the brain and its neurochemistry— neurons, synapses, membranes, receptors, ion channels, neurotransmitters, enzymes, 60

etcetera.” Neurological molecularization or ‘neurologization’ includes discourses of both neurochemistry and neurological structure. Scholars have linked these discourses to the respective subjectivities of neurochemical (Rose 2003; Ortega 2009) and neurostructural

(Fein 2011) selfhood.

Somatic Expertise

Somatic Expertise refers to “new ways of governing human conduct” (Rose

2007:6) which encompass somatic technologies of both patients/parents and professionals.

Professionals exercise somatic expertise through specializations on “particular aspects of our somatic existence” and “advise and guide … individuals and families as they negotiate their way through the personal, medical, and ethical dilemmas that they face” (Rose 2007:6). In doing so, they act as what Rabinow (1999:413) calls “pastoral keepers” who “help [patients and families] experience, share, intervene, and ‘understand’ their fate.” Pastoral keepers whose work becomes particularly known may be the destination for what Rose (2007:6) calls “pilgrimages of hope,” in which patients and families travel to access cures or treatments.

Patients/parents exercise somatic expertise through lay expertise. Similar to

Rabeharisoa, Moreira, and Akrich (2014), I understand lay expertise to operate among two lines, which I call experiential expertise and patient literacy. Rabeharisoa and colleagues (2014) explain this division for organizations:

Secondly, patients’ organisations’ concerns with disease and its exploration has entailed a redistribution of competencies and prerogatives between patients and credentialed experts. Certain patients and activists acquired scientific and medical knowledge, becoming what Epstein (1995) labelled ‘lay experts’, i.e. credible interlocutors of specialists. Patients’ organisations also collected, formalised and circulated patients’ experience as a legitimate body of ‘experiential knowledge’ 61

(Arskey 1994; Borkman 1976) on their conditions, and became what Rabeharisoa & Callon (2004) called ‘experts of experience’. This two-fold role played by patients’ organisations, as ‘lay experts’ and ‘experts of experience’, has led to new forms of cooperation between patients and specialists in the production, discussion and dissemination of knowledge. This transformation extended the repertoire of styles of mobilisation enacted by patients’ and users’ organisations, adding to forms of contestation new modalities of articulation that bring together these organisations and specialists to negotiate the scope of epistemic arenas for their conditions.

I note a similar two-fold role, though also for individuals and not limited to organizations.

I use the term “Experiential Expertise” (Borkman 1976; Hughes 2009; Rabeharisoa,

Moreira, and Akrich 2014; Rabeharisoa and Callon 2004) to describe the ways in which patients/parents challenge medical authority and assert that they may know better than the doctors by virtue of their personal and familial experiences. I take the term from

Borkman (1976), who explains:

Experiential knowledge is truth learned from personal experience with a phenomenon [….] Besides experiential knowledge, there is experiential expertise […] which refers to competence or skill in handling or resolving a problem through the use of one’s own experience [….] Thus experiential expertise can serve as a basis for leadership, a higher status in the group, and a source of authority for decision making.

Patients/parents may also exercise lay expertise by internalizing, not challenging, medical authority. They do this through patient literacy, reading up on the diagnosis and cultivating medical expertise. I use this term rather than “lay expertise” to avoid the ambiguity of the origin of this expertise, dividing it based on the source of the authoritative knowledge (Davis-Floyd and Sargent 1997). Moreover, it is also important to understand the nuance of the mobilization of lay expertise and its relationship to professional expertise. Hughes (2009) contrasts the lay expertise of new biopolitical theory (biosociality) with that of the “social model stalwarts” of the Disabled Peoples’

Movement: 62

If the [Disabled People’s Movement] valorizes the experiential knowledge of disabled people, biosocial associations are more likely to embrace a more complex epistemological position that has been described as a ‘coalition or hybridisation of experiential knowledge, lay expertise and counter-expertise’ (Hess 2004, 697).

One important concept related to somatic expertise is that of “somatic individuality,” referring to “beings whose individuality is […] ground within our fleshy, corporeal existence, and who experience, articulate and judge, and act upon ourselves in part in the language of biomedicine” (Rose 2007a:26). One such form of somatic individuality is the cerebral subject, “an anthropological figure that embodies the belief that human beings are essentially reducible to their brains” (Ortega and Vidal 2007). Brekke and Sirnes

(2011) 2011 present instead the concept of “hypersomatic Individuals” who are more soldier than citizen. This metaphor harkens back to militarization metaphors elsewhere in biomedicine, most notably “fighting” cancer (Erwin 1987). It appears also in autism studies, as parents – particularly mothers – take on identification with a role as “autism warriors” (de Wolfe 2014). Niewohner (2011) explores molecularization under epigenetics, claiming that it relies not on somatic expertise but somatic sociality, explaining “People do not need to translate their somatic self-understanding into a way of life any longer [….] I suggest the term somatic sociality to mark this phenomenon.

Somatic sociality means sociality understanding and reproducing itself on the basis of biological knowledge about its epigenetic effects on the individual body. In other words, somatic sociality is a form of sociality where the collectivizing momentum is provided by molecular understandings of social life itself. It is not individuals with the same polymorphism understanding themselves through that polymorphism or forming a collective on the basis of that polymorphism. It is individuals slotting into forms of social 63

life that molecular biology produces as forms of social life that are good for your body and your health, for example, you have friends but do not expose yourself to large socioeconomic differences.” In both somatic individuality and somatic sociality, nature is remodeled on culture. However, “Somatic sociality refers not to the collectivization of individuals on the basis of biological knowledge of a shared phenotype. Instead, the notion of somatic sociality marks instances and forms of sociality and of social life that are directly modelled on nature. Particular forms of social life come to be known and practised increasingly through their somatic, that is, ‘natural’ consequences.”

Somatic individuality blurs the line between professional and patient/parent.

Patients and family members become experts in their condition of concern (Novas and

Rose 2000; Rose 2007a:134). This type of patient responsibility involves a role significantly from Talcott Parsons' classic (1951) sick role, as in genetic responsibility where “the patient is to become skilled, prudent, and active, an ally of the doctor, a protoprofessional, and to take a share of the responsibility for getting themselves better”

(Rose 2007a:110). Patients/parents are responsibilized in that they are expected to study and use this medical expertise. They are “urged to become active and responsible consumers of medical services and products” (Rose 2007a:4), to collaborate with professionals, and to become protoprofessionals themselves. Moreover, they must take responsibility for themselves outside of strict medical expertise, demonstrating that they are the right kind of patient to be deserving of medical care. As Robins (2006) about responsibilized ARV patients in South Africa, “In terms of this call for a paradigm shift, clients would be entitled to free government health care, including ARV drugs, but they would also need to demonstrate that they were ‘responsibilized clients’— specifically 64

through treatment adherence, disclosing their HIV status, using condoms, abstaining from alcohol abuse and smoking, and having healthy diets and lifestyles.” Responsibilized patients use “technologies of the self” (Foucault 1988) to monitor and intervene on their own body-selves (Murray 2009; Race 2012; Taussig, Rapp, and Heath 2003). Taussig,

Rapp and Heath (2003:59) succinctly define these technologies as “the practices by which subjects constitute themselves, and work to improve themselves, while living within institutional frameworks of power.” These subjects are responsible for consuming and understanding biomedical knowledge and applying it to themselves on a daily basis.

They are also responsible for making informed consumer decisions about biomedical services, products, and strategies.

Illness Identities

“Illness identities” refers to the mobilization of medical/psychiatric labels as identity categories. The literal definition of identity is “sameness,” the recognition of similarity between self and others (Bucholtz and Hall 2006; Sökefeld 1999). In new biopolitical theory as identification of biological sameness leads to the formation of biosocial groups (Rabinow 1999). However, anthropologists understand the subjective experience of identity as more complex than sameness/difference (Bucholtz and Hall

2006). This study recognizes identity as something that a reflexive self (following

(Hallowell 2010) enacts through agentive self-presentation in social contexts (Sökefeld

1999). Furthermore, those employing biosocial identities do not simply accept biology as a given; they contribute to the construction of the biologies on which these identities are based (Wehling 2011). The bases of categories are constantly redefined in what Hacking calls the “looping effect” of “making up people,” categories such as “people with autism” 65

(Hacking 2007). The use of autism-as-an-identity has been amply documented (Bagatell

2010; Chamak 2008; Kapp et al. 2012; Orsini 2009; Ortega 2009; Ortega and Choudhury

2011). Ortega explores one form of illness identity specifically relevant to people with autism: “cerebral subjectivation.” This term refers to brain discourses in which “people define themselves as autistics … because their brains are ‘wired’ in an atypical way”

(Ortega 2009). Autism functions as an identity not only for those diagnosed, but for the whole family. I use Stuart Murray’s (Murray 2008) term “the family with autism” to refer to identification as an “autism parent” – an individual identity based around autism for parents of people with the diagnosis, not people with the diagnosis themselves. I refer here to parent identification as a certain type of parent – and autism parent or, as Juliette de Wolfe recently wrote, “autism warriors.” I consider this membership in an imagined community.

Collective Identities and Biosocialities

Collective identities and biosocialities refers to membership in less imagined communities and more support groups and advocacy organizations. Collective identities and biosocialities refers to collectivities around conditions, risks, or experiences understood to be biological. Rose describes three forms of biocitizenship: informational, which I use to mean the role of collectivities and parent networking in sharing information both scientific/medical and administrative; rights biocitizenship in which patients/parents “[campaign] for better treatment, ending stigma, getting access to services, and like” (Rose 2007a:135); and digital biocitizenship, in which patients/parents use the internet to find information, resources, and connections.

Not all patients can access biological citizenships and citizenship collectivity 66

claims. For example, several scholars have explored the limits of new biopolitical modes of engagement for stigmatized or socially less desirable groups such as first generation

Korean-Americans (Kim, Haney, and Hutchinson 2012), Nicaraguan immigrants in Costa

Rica (Goldade 2009), Hepatitis C patients in Australia (Fraser 2010) and the UK

(Rhodes, Harris, and Martin 2013) who are constructed as “bad” citizens and limited in their access to new biopolitical modes of engagement.

Cross-Cultural Studies of New Biopolitical Theory

As discussed in Section 1, biomedicines vary from country to country, context to context. Similarly, biopolitics vary. New biopolitical theory has been found useful in the

United States (Block et al. 2011; Carpenter 2010; Norton and Zehner 2008; Rapp 2000b;

Rapp 2000a; Raspberry and Skinner 2007; Raspberry and Skinner 2010), Canada (Orsini

2008; Orsini 2009), the United Kingdom (Carpenter 2010; Gibbon 2007; Gibbon 2008;

Roberts 2007), New Zealand (Fitzgerald 2008), Sweden (Asberg and Johnson 2009),

Norway (Brekke and Sirnes 2011), Germany (Guell 2011; Kampf 2010), Austria (Felt and Müller 2011), the Ukraine (Petryna 2002), and Italy (Alcano 2009). It has been found to not be applicable in other settings, such as in Mozambique where HIV/AIDS organizations compete and instead of biosociality there is “biosociopathy” (Kalofonos

2010), and in Tanzania where the role of the biological is not as important as pre-exist social networks, making “(bio)sociality” a more appropriate term (Marsland 2012) Some scholars have therefore identified a geographical focus for new biological theory, linking biosociality to “Europe and North America” in contrast to its absence in Ecuador

(Roberts 2008), or contrasting “Western” bio-citizenship and neoliberal governance with

China (Sleeboom-Faulkner 2011). Biosociality has also been reworked in India, where 67

Bharadwaj finds “bio-availability” more useful (Bharadwaj 2008). However, others have associated biosociality with “Europe and North America” yet nonetheless argued for its applicability in Brazil (Cataldo 2008). Certainly, new biopolitical theory has also been explored outside Europe and North America in such countries as Chile (Cuevas

Valenzuela and Pérez Zamora 2011), China (Lora-Wainwright 2009), Israel (Nahman

2008), Oman (Beaudevin 2013), Senegal (Fullwiley 2010), Singapore (Reubi 2010),

South Africa (Robins 2006), Tanzania (Beckmann and Bujra 2010), Uganda (Wilhelm-

Solomon 2013), the Gambia (Cassidy 2010), and Burkina Faso (Nguyen 2005); as well as in India (Ecks 2005; Misra 2006); and on-line networks extended to support parents’ in

Latin America as well as Europe, Australia, the US, and Canada (Rapp 2003).

Moreover, these theories have been challenged at least in the Anglophone world.

Anthropologists have found striking absences of biosociality in U.S. rare genetic disease organizations (Panofsky 2010) and among U.S. research participants in an enriched-risk cohort study of autism (Lappé 2014), not to mention varying levels of participation in biosocial organizations by social position (Rapp 2000a); they have also noted the absence of geneticization concepts for Alzheimer’s in the U.S., U.K., and Canada (Lock 2008;

Lock, Lloyd, and Prest 2006); Hacking notes that Canadian transhumanists seem to resist biosocial identities (Hacking 2006a). Similar to Marsland’s (2012) (bio)sociality, Celia

Roberts proposes the hyphenated term bio-sociality in her study of hormone replacement therapy, “to insist that the implosion of the biological and the social is not as advanced or wide-ranging as [other] work sometimes implies” (2007:21). They have taken issue with the “political economy of hope,” highlighting instead its “darker side” – fear and new obligations (Brekke and Sirnes 2011; Charles 2013). Scholars in Italy have argued that 68

Italian biological citizenship is more akin to Petryna’s in Ukraine (Petryna 2002) than

Rose’s (Novas and Rose 2000; Rose 2007a; Rose and Novas 2005) “advanced liberal societies” (Metzler 2007), and that biosociality is limited by the lack of patients’ consumer role (Cola and Crocetti 2011). In accounting for variations, Beck and

Niewohner suggest the term “bio-cultural intimacy” to refer to a theory of biosociality that takes historical and cultural contingencies better into account (Beck and Niewohner

2009). Others, however, question whether the new genetic sciences and resultant subjectivities are really all that new and propose instead a plurality of politics of life

(Raman and Tutton 2010). Still others question the “citizenship” of biological citizenship if people are not able to exercise citizenship capabilities (Árnason 2013).

Another challenge to new biopolitical theory comes in part from the wide range of approaches to its study in both the social sciences and humanities. Particularly with the range of studies drawing from published materials such as advertising or specific targeted communities such as online forums, literature on new biopolitical theory often gives the materialist impression that new biomedical technologies themselves lead to new identities and subjectivities. Ethnographic studies complicate this relationship by demonstrating variability in the uptake of new biopolitical theory by demographic and other factors

(Rapp 2000a), by exploring new biopolitical themes in the production (not just consumption) of biomedical knowledge and technologies (Eyal et al. 2014; Fitzgerald

2014; Lappé 2014), and by linking new biopolitical modes of engagement to historically relevant modes of engagement in a particular locality (Marsland 2012). This dissertation enriches new biopolitical theory by exploring the applicability of the new biopolitical themes listed above “on the ground,” offline and in the day to day lives of people with 69

autism and their families who are actively participating in autism-centric activities.

The applicability of the new biopolitics is therefore muddled. It may be local, it may depend upon the aspect of post-Human Genome medicine under consideration, or it may be nothing at all. It is therefore worthy of investigation. More specifically, just as anthropologists have found that biomedicines vary by locality, so too may biosocialities vary or be absent in different biomedical contexts.

Several factors make Italian medicine particularly well-suited for this study.

Firstly, in the 1970s Basaglia famously initiated a world-renowned movement of deinstitutionalization (Scheper-Hughes and Lovell 1986). This movement led to policies of social and educational integration, including hiring quotas for employers (Crialesi et al.

2007:275), and the laws of integrazione scolastica mandating the inclusion of students with disabilities in public schools (Canevaro and de Anna 2010). Secondly, Italian medicine remains, for the most part, non-privatized; therefore patients lack the consumer role seen in systems like U.S. healthcare (Cola and Crocetti 2011). Finally, doctor-patient interaction can be paternalistic, as in the case of non-disclosure of cancer diagnoses

(Gordon 1990; Gordon and Paci 1997). For these reasons, we might expect new biopolitical subjectivities to be minimized. Biosociality is exclusive by its specificity, whereas social integration is inclusive. A lack of a consumer role for patients may minimize their mobilization of lay expertise, as would paternalistic doctor-patient relationships.

Section 4: The Anthropology of Youth

In order to explore health identities and subjectivities around autism, this study focuses on adolescents and adults ages 14-34 labelled with autism spectrum conditions. 70

My research design identifies adolescents and youth as the target population for this study due to specific research question (3) on new biopolitical theory. As discussed in

Section 3, new biopolitical theory is concerned with subjectivity, specifically sociality and identity, around autism (Fein 2011; Ortega 2009; Rabinow 1999; Rose 2007;

Silverman 2008). Following Erikson (1968), anthropologists have found adolescence to be near-universally a time of both increased sociality with non-family peers, and identity development. This makes adolescence the ideal stage in which to address these questions.

Therefore, this study draws heavily from the anthropological fields which address this age group. This section very briefly reviews the Anthropology of Adolescence, Youth

Cultures, and the Anthropology of Youth. It also reviews studies of youth with autism that are relevant to the major themes in the Anthropology of Youth.

Human development generally and adolescence in particular have been central concerns in anthropology since Mead’s famous (Mead 2001), but debated (Freeman

1983; Holmes 1988; Orans 1996), study of Samoan adolescence. This work provided an ethnographic veto to Stanley Hall’s theory of universal “storm and stress” in adolescence

(Hall 1904). Though there was a pause in attention to adolescence directly following

Mead’s work, later psychological anthropologists and anthropologists of human development paid greater attention to adolescence (Anderson-Fye 2010; Brown and

Larson 2002; Fong 2006; Fussell and Greene 2002; Mortimer and Larson 2002; Korbin and Anderson-Fye 2011; LeTendre 2000; Parikh and Adams 2005; Weisner and Lowe

2005), particularly following the series Adolescents in a Changing World project

(Burbank 1988; Condon 1988; Davis 1999; Hollos 1989) and the Adolescent

Socialization Project (Schlegel and Barry III 1991). 71

The life course approach of the Anthropology of Adolescence is often contrasted with the approach of Youth Cultures (Bucholtz 2002; Eyre, Hoffman, and Millstein 1998;

Lave et al. 1992), generally associated with British social anthropology and cultural studies. Many studies focus on media and popular culture/subculture (Hebdige 1991;

Kinsella 1995). Whereas the life course approach is concerned with developmental stages, socialization, and transition, the Youth Cultures approach is concerned with adolescents in the present, irrespective of developmental trajectories. It tends to be associated with place, often schools (Bucholtz 1999; Bucholtz 2001; Corsaro 1996;

Corsaro and Molinari 2000; Davis, Watson, and Cunningham-Burley 2000). This scholarship is often concerned with identity (Bucholtz 1999; Bucholtz 2001; Bucholtz and Hall 2006; Mendoza-Denton 1996; Ortega and Choudhury 2011; Vestel 2009) and sexual culture (Yan 1999).

Bucholz proposes a synthesis which she has called “the anthropology of youth” which respects youth as agents beyond being unfinished adults, while still attending to diachronic factors (Bucholtz 2002; Cole 2004).

Anthropologists generally define adolescence as the time between physiological puberty and the assumption of full adult social roles. The anthropology of adolescence has addressed many domains within this life stage, including peer interaction, identity, sexuality, and ritual. It is complemented by the field of “youth cultures” and the newer

“anthropology of youth” synthesis, which focus more on adolescents as “youth” engaged in cultural practices that are significant in their own right, rather than only as stepping stones to adulthood (Bucholtz 2002). In the case of developmental disorders such as autism, it is understandable that attention would focus on issues of development. Many 72

studies of adolescents with autism are aimed at increasing future function through focus at this time, therefore taking an approach most similar to the anthropology of adolescence.

Autism spectrum conditions have often been considered disorders of childhood, although attention has more recently been turned towards adults. Adolescence, as a life stage somewhere in the middle, often gets overlooked. Scholarship on autism and adolescence is therefore rather specialized. This paper provides a brief review of such scholarship. It is divided into sections based on topics of particular anthropological interest: rites of passage into adolescence, identity development, peer relationships, sexuality, and the transition to adulthood. Each section couches literature on autism within an anthropological discussion of adolescence and youth.

Rites of Passage

Rites of passage have long been of anthropological interest, and clearly relate to a life stages approach. Some have claimed difficulty in identifying clear rites of passage in contexts such as the United States, making transitions between life stages difficult to demark socially (children, tweens, teens, young adults, etc.). Some have pointed to events like Prom. One clear rite of passage exists in the Jewish religious tradition, both in Israel and among Jewish populations living in other countries. This is of course the Bar or Bat

Mitzvah, which occurs at age 13 and officially signals a Jewish person’s entrance into social and religious adulthood. However, the adulthood of an initiated person has been contested. The rite of passage may perhaps more accurately be thought of as entrance into adolescence. A small collection of writing addresses the experience of the Bar/Bat

Mitzvah for persons diagnosed with autism and similar conditions, and focuses on 73

strategies for empowering young people with disabilities to participate in the ritual and the meaning of their participation for the youth themselves and for their parents (Hyman

2009; Vogel and Reiter 2003; Vogel and Reiter 2004).

Identity

Erikson noted the importance of identity development in adolescence (generally ages 12-18). Anthropologists have agreed with this focus and studied identity extensively in this life stage and in peer cultures studies. As discussed above, the role of autism as an identity has been widely documented (Bagatell 2010; Nadesan 2005; Orsini 2009; Ortega

2009). In these cases, autism is not only something someone “has” following APA person-first language, it is also an identity akin to GLBT or Deaf (Davidson and

Henderson 2010). Many people taking autism as an identity prefer therefore to use the term “autistic” (Davidson and Henderson 2010). Several studies have addresses important aspects of autism and identity in persons with autism in a more Youth Cultures framework, so to speak, without attention to life cycle.

Ortega (2009) discusses the use of brain discourses by self-advocates that express

“cerebral selfhood,” consistently largely of the metonymous use of “my brain” for “I.”

Fein (2011) elaborates upon this in her discussion of “neurostructural selves,” drawing on data from adults self-advocates and those who work with adolescents with Asperger’s syndrome. Both Ortega (2009) and Fein (2011) stress that the use of such brain discourses present autism spectrum conditions as “morally innocent.” In other words, the problem behaviors of autism are rooted in brain structure, and do not reflect individual failures to overcome them the way that “psychiatric” conditions might (Fein 2011).

Ortega and Choudhury (2011) explain that these self-concepts lead to “neurological 74

identities” based on the discourse that brain differences are natural not pathological. This use of neuroscientific discourse explicitly contrasts with typically-developing adolescents’ rejection of neuroscientific discourses about their deficient brains (Ortega and Choudhury 2011).

Humphrey and Lewis (2008) used semi-structured interviews, participant diaries, and participant drawings to understand the subjective experience of pupils with

Asperger’s syndrome in inclusive educational settings in the UK. They found

“constructing an understanding of AS [Asperger’s Syndrome]” to be a central theme in student data. Some students reported that having the label of Asperger’s Syndrome made them feel “not normal” and fear being seen as “retarded,” while others saw Asperger’s as a valuable part of “who they were,” particularly with peer support (Humphrey and Lewis

2008).

Bagatell (2007) presents a person-centered ethnography of Ben, a 21-year old adolescent college student diagnosed with high-functioning autism. Bagatell (2007) addresses Ben’s identity development through 9 months of fieldwork and retrospective data gained from Ben’s storytelling. Earlier in his adolescence, Ben tried to conform to an idea of normal, particularly in his school settings. However, he experienced severe stress and suicide ideation that led to hospitalization. After this event he became involved in the

“Aspie” community of self-advocates and took up new vocabularies and a new identity as an “Aspie” – a person with Asperger’s syndrome or, in Ben’s case, high functioning autism. The Aspie world allowed Ben to stop “pretending” to be normal and embrace the way his mind worked. However, Ben experienced tension “orchestrating voices” of both the Aspie world and the mainstream world in which he attended college. Ben later 75

attempted suicide a second time. Bagatell’s (2007) in-depth exploration of Ben’s identity development demonstrates that orchestrating such voices takes hard work, and that all identities are in a state of constant revision.

Peer Relationships

Anthropologists have identified peer relationships as a cross-cultural and indeed cross-species near-universal characteristic of adolescence. In adolescence, humans and other species intensify peer relationships, especially homosocial relationships. Large cross-cultural studies have found that boys tended to leave the home in age-sets but girls tended to remain in the home and have relationships across ages (Schlegel and Barry III

1991). Although researchers have found that the social and interpersonal skills of persons with autism improve with age (Mesibov and Handlan 1997), some studies show the gap between individuals with autism and typically developing peers widens at adolescence as these skills become more complex (Duncan and Klinger 2010; Locke, et al. 2010), and others find that reciprocal friendships are more common when youth with autism are younger (Orsmond, Krauss, and Seltzer 2004). As Howard and colleagues (2006) note in their case study of a 12 year old home-schooled boy in the US about to enter public school, “adolescence may be a particularly challenging time for people with ASDs because of the increasing importance of intimate relationships.” An exploratory sample of

US adolescence with Asperger’s Syndrome found high levels of peer victimization and stigma for participants across educational settings, by self and parental report

(Shtayermman 2009). More in-depth qualitative research with UK students with

Asperger’s confirmed that peer victimization is high, although peer support also impacts the lives of students in inclusive educational settings (Humphrey and Lewis 2008). This 76

subsection explores peer relationships across a variety of settings.

One of the first peers US children often know are in the home, their siblings.

Orsmond, Kuo, and Seltzer (2009) based their study of sibling relationships in the context of autism on findings in typical psychology that sibling relationships tend to decrease in adolescence when this outside peer relationship becomes more important, and then increase in later adulthood. Orsmond and colleagues (2009) lamented that previous research on sibling relationships when one sibling has autism have focus on childhood or a range of ages. The authors wanted to know how the sibling relationship changes over time when one sibling is labeled with an autism spectrum condition, and explicitly compared adolescent and adult sibling dyads. They administered questionnaires measuring positive affect and shared activities. Both groups reported similar positive affect. The diversity of shared activities varied based on the genders of the siblings among adults, but not among adolescents. These findings suggest that the sibling relationship was more stable over time in terms of closeness than in the literature on typically developing adolescents (Orsmond, et al. 2009).

More studies of peer interaction among adolescents labeled with autism spectrum conditions have taken place in institutional settings, such as schools. Compulsory schooling lengthens adolescence, brings age-mates together, and intensifies peer group formation (Brown and Larson 2002). For individuals with autism, an important facet of compulsory schooling has been national trends towards inclusive education (Begeny and

Martens 2007), particularly following the United Nations Convention on the Rights of

Persons with Disabilities which stated the right to inclusion in free and compulsory education (Nations 2006). Several scholars of education have investigated the 77

experiences of children and adolescents with autism in inclusive settings in the US

(Boutot and Bryant 2005; Carter et al. 2008; Ochs et al. 2001) and UK (Humphrey and

Lewis 2008; Humphrey and Symes 2011; Symes and Humphrey 2010). A US study

(Carter et al. 2008) of students with developmental disabilities in inclusive classrooms found that social interaction between those with and without disabilities was higher in small group instruction without support teachers, but academic outcomes were better during one to one or small group instruction with general or special educators nearby.

Another US study (Ochs et al. 2001) found that the role of other children may be in fact more important than educators in facilitating the social inclusion of children with autism.

Peer training programs tap into this potential (Owen-DeSchryver et al. 2008). A UK study used spot observations of 38 secondary school students with autism spectrum conditions from 12 mainstream schools and compared their peer interaction patterns with students with dyslexia and students with no identified special education needs

(Humphrey and Symes 2011). The students with autism spectrum conditions spent more time in solitary pursuits, less time in co-operative interaction, and more time reacting to aggression from peers than participants in the other two groups. Students with autism spectrum conditions also engaged in less rough/vigorous play and experienced more

(positive) social initiation as well as (negative) verbal aggression from peers. The authors found that students with autism spectrum conditions may have recognized neither social initiations nor bullying, given their lack of response to either. They suggest increased social skills interventions in these specific areas (Humphrey and Symes 2011).

Locke and colleagues (2010) similarly investigated peer interaction among adolescents in an inclusive US school. Their 7 high-functioning participants were all 78

enrolled in a drama class at mainstream high school along with 13 typically developing peers. The authors gave all students survey measures of loneliness and social networks asking them to list their friends. Adolescents with autism spectrum conditions reported more loneliness than their typically developing peers. Adolescents labeled with autism spectrum conditions tended to list another adolescent with autism as a “best friend.”

These friendship dyads were comparable to typically developing friendships in most domains but “poorer” in terms of companionship and helpfulness. However, the authors argue that such friendships may be characterized as appropriate for persons with autism and be equally developmentally useful as the more companionate and helpful relationships of the typically developing students (Locke, et al. 2010). Similar to

Humphrey and Symes (2011), the authors argue for increased social skills interventions

(Locke, et al. 2010). Both studies found that inclusion, though based on sound theoretical goals, was not sufficient in and of itself to accomplish strong social networks. Locke and colleagues less so than Hymphrey and Symes assume social networks as indeed the goal, as they allow for the conceptualization of other types of friendships as valid.

Researchers have also investigated peer interaction in specialized institutions.

Poon (2011) reported on several measures of activities and participation for adolescents diagnosed with autism spectrum conditions in a special school setting in Singapore. The study found that adolescents had greater strength in “activities” (i.e., self-care and general tasks) than “participation” (i.e., interpersonal interaction, community and social life), possibly due to difficulties in generalization (Poon 2011). Poon (2011) therefore found that a drawback to a specialized, as opposed to inclusive, program for adolescents is that skills learned in controlled settings may not be generalized to home and community 79

settings.

Sexuality

In addition to homosocial relationships, adolescence is often associated with sexual relationships and subjective experiences of sexuality. Herdt suggests the process of sexuality development begins around 10 years of age (Herdt 1987/2005; McClintock and Herdt 1996). Previously, popular and scholarly literature failed to acknowledge or outright denied the sexuality of persons with disabilities (see Tissot 2009 for a review).

However, newer research has confirmed that many persons with autism do in fact desire sexual and romantic relationships (Hellemans, et al. 2007; Ousley and Mesibov 1991), and new studies are emerging that focus on sexual development in adolescence specifically. Much of this literature has come from a service provision and program development perspective.

Sexuality can be risk for persons with disabilities. Individuals with autism are both at risk of abuse and risk inflicting abuse on others, therefore increasing the need for education (Tissot 2009). Parents participating in a focus group on sexuality education in the US expressed the same concerns and came to the same conclusion that education could help (Nichols and Blakeley-Smith 2010). Parent reports also indicate more

“inappropriate courting behaviors,” even stalking, among adolescents and adults with autism, suggesting a need for social skills interventions relating to sexuality (Stokes, et al.

2007).

Melone and Lettick (1983) and Tissot (2009) both describe the development of a sexual education program for students with autism at specialized, residential schools.

However, Melone and Lettick (1983) were writing in the United States in 1983 and 80

Tissot (2009) in the United Kingdom in 2009. Therefore, although the authors described similar goals with similar participants, Melone and Lettick (1983) reads more as an artifact. Tissot (2009) identifies “views of society” as the most challenging obstacle to providing sexual education to individuals with disabilities. Despite Melone and Lettick’s

(1983) relatively progressive goal of supporting individuals with autism to develop solo sexuality, the authors discuss their participants in much the same way as Tissot (2009) criticizes. Melone and Lettick (1983) describe in no uncertain terms why their residents are prohibited from sexual activity: because it would be dangerous, because the students would be emotionally or cognitively incapable of relationships, or to a lesser degree because the students expressed no interest in it. While disinterest would certainly be a good reason, the authors presume, rather than demonstrate, the incompetence of their clients, going so far as to suggest that a student with “near-normal sexual feelings” should not remain at the institution. Melone and Lettick (1983) make clear that “this is not a program for individuals who can engage in intimate sexual relationships”

(1983:176).

Tissot (2009) criticizes earlier literature for similar assumptions of asexuality.

Tissot’s (2009) school also prohibits paired sexual activity, but by national law rather than the individual school board. However, Koller (2000) draws on Melone and Lettick nearly 20 years later in a review of successful sexual education programs. Koller (2000) also summarizes a similar program in Denmark, developed in the 1990s, which still treats paired sexuality with reservations, but with openness to supporting it through education rather than rejecting the development of such feelings as in Melone and Lettick (1983).

Despite their differences, both programs focus on teaching the what, when, and where of 81

sexuality, with a particular focus on the concept of “private” activities. Tissot (2009) calls this “establishing a sexual identity;” Melone and Lettick describe it as “understanding … their own sexuality.” Koller’s (2000) review focuses on adolescents’ “self-esteem” and

“healthy self-image.” These goals are all individual and treat sexuality as a component of an individual identity. The limitations of this approach should be obvious: as many persons with autism desire sexual relationships (Bagatell 2007; Hellemans, et al. 2007).

The following paragraph describes the few interventions that discuss sociosexual skills, rather than solo sexuality.

Duncan and Klinger (2010) discuss a social skills intervention program for adolescents with autism in an outpatient clinic in the US. This program did include training regarding “Friendships and Dating in High School” but the authors did not comment on the characteristics of the participants in terms of social functioning or activities of daily living. However, Nichols and Blakeley-Smith’s (2010) focus group with parents of children with autism in the US found that regardless of the child’s ability level, parents expressed a desire for fulfilling relationships as part of their goals for sexuality development programs. The authors then developed a parent training program that addressed these goals. These programs directly contrast with the residential programs in which education did not address sexual relationships. It is worth noting that Tissot

(2009) treats this absence more as a constraint of the setting than the participants.5

Transition to Adulthood

5 The language of the article reflects sympathy for the predicament of the case study in which the problem behavior was an intimate relationship. E.g., “Eventually Colin was offered an adult placement…. John found this exceptionally hard…. Unfortunately at the time of this writing, they have not seen each other since leaving Queensgate School.” Tissot (2009) also notes that the main problem came from John’s parents distress at the homosexual nature of the relationship specifically, not the sexual intimacy generally. 82

Autism spectrum conditions are generally diagnosed in early childhood, and research tends to focus on either this life stage or adulthood (specifically the transition to adulthood). Studies often group adolescents and adults together without differentiating between the stages. Perhaps this is because it is so difficult to determine when someone with a developmental disability develops into different life stages. Anthropologists define adolescence as the period between physical maturity and social maturity defined as “the assumption of full adult roles.” Many studies of adolescents and adults with autism focus on outcomes (for a review see Levy and Perry 2011), on how successful the assumption of roles such as independent living actually is. These studies therefore assume an age- based marker of adulthood, which can be successful or unsuccessful but nevertheless is adulthood; adulthood is not defined by the assumption of full adult roles but outcomes for age-defined adults are defined by the extent of these assumptions.

A specific set of studies defines adulthood as post-schooling. Hendricks and

Wehman (2009) provide a review of outcomes that defines adulthood in this way. The transition out of high school is particularly important for adolescents with autism because the public school district provides many services that may or may not be replaced by other services afterwards. For many adolescents in the United States, post-secondary education is an important additional educational stage. Camerena and Sarigiani (2009) provide data on interviews with high-functioning adolescents with autism currently in high school regarding their aspirations and expectations for college.

Developmental disabilities such as autism provide a challenge to the anthropological definition of adulthood in that people with developmental disabilities do not necessarily attain “full adult roles” and yet do reach adulthood (for a review of 83

adulthood and aging in autism see Wright et al. 2013). Literature on acquired physical disability has explored the “erosion of full adult personhood” due to the limitations of physical disability (Luborsky 1994). A study of women who had ostomy surgery explores their “personhood realignment” strategies, attempting to reclaim full adult personhood.

The author argues that people do not fully regain it, but gain it in the absence of certain specific characteristics (Ramirez et al. 2014). Limited work has been done on this process at all, and especially so in people born with developmental disabilities like autism, though there are compelling exceptions, particularly Edgerton’s (1971; 1984) compelling exploration of adults with intellectual disabilities and the way they craft adult roles for themselves, and newer work (Mehrotra and Vaidya 2008; Olney and Kim 2001). This dissertation will explore the way various individual and institutional actors in the Italian context work to provide opportunities for full adult roles to people with autism by investigating the experiences of youth aged 14-34 in autism-specific contexts.

Conclusion

This chapter has situated my dissertation research within four key literatures: the anthropology of biomedicine, the anthropology of autism, new biopolitical theory, and the anthropology of youth. This dissertation derives from and contributes to each of these literatures. It derives from the anthropology of biomedicine in its recognition of differences in biomedicines around the world, and its choice of Italy as a fieldsite heavily influential in the history and development of Western biomedicine, yet distinct from

Austria and the United States where autism was first described. It contributes to the anthropology of biomedicine by providing a detailed description of the Italian context and its impact on people with autism and their families. It derives from the anthropology 84

of autism in its choice of autism as a research topic and its respect of the local and historical particularity of autism and focus on non-deficit focused narratives. It contributes to the anthropology of autism by providing rich ethnographic data on the

Italian context and internationalizing the conversation. It derives from literature on new biopolitical theory in its choice of theoretical framework, and contributes to this literature by operationalization, challenging, and expanding new biopolitical theories. Finally, it derives from the Anthropology of Youth in its choice of age group and autism-specific setting. It contributes to the Anthropology of Youth through an investigation of meaning in the life cycle and the creation of opportunities for full adult roles for people with developmental disabilities in Italy.

Chapter 2: Background

Chapter Overview

This chapter provides background information on autism in Italy, setting the stage for this research study. It begins with discussion of the history of autism with particular emphasis on social histories. It then presents a brief historical overview of autism in Italy, including the history of psychiatry and health and human services more broadly. It then provides an overview of the management of autism services in Italy during the data collection period, including scholastic and other institutional paths for persons with disabilities. This chapter will set the stage for the presentation of data collected from autism professionals, parents, and people with autism themselves in the following chapters.

Section 1: History of Autism

In the early decades of the 21st century, autism has received immense and growing scholarly, professional, and popular attention. Indeed, the history of autism has been rehearsed so many times that it has truly developed into, as Solomon (2010) aptly notes, an “origin story.” The story goes something like this: in the 1940s a scientist in the

United States (Leo Kanner) and another in Austria (Hans Asperger) independently observed two different groups of young people and independently used the term

“autistic” to describe them (Asperger 1944; Kanner 1943). The term derived from Eugen

Bleuler’s (1950) descriptions of schizophrenia and referred to self-absorption (Hacking

2010). However, due to language barriers during and after the Second World War, these works were not unified until the 1980s, when Lorna Wing translated Asperger’s work into English (Wing 1981). The syndrome which now bears his name was considered 86

similar enough to Kanner’s syndrome to combine them into the umbrella term “autism spectrum disorders,” or ASD in the DSM-IV despite the fact that – as Wing (1981) discusses in her paper – Asperger himself argued that his syndrome and Kanner’s autism were different. Diagnoses under this umbrella are applied to people, often in childhood, with impairments in social interaction and communication and restricted, repetitive interests and behaviors. ASD has long been a “classification in motion,” in Hacking’s

(2010) words. It was called childhood schizophrenia until it was noted that children with autism did not grow into adults with schizophrenia but rather, adults with autism. For similar reasons, the term “infantile autism” was abandoned, and it was re-conceptualized as a pervasive, also in the sense of life-long, developmental disability.

As of this writing, the United States Centers for Disease Control and Prevention’s most recent reports indicate a prevalence of all autism spectrum conditions at 1 in 68

(Baio 2012). Syntheses of international reports place conservative estimates at 13 per

10,000 for autistic disorder, 21 per 10,000 for PDD-NOS, 2.6 per 10,000 for Asperger’s

Syndrome, and 0.2 per 10,000 for childhood disintegrative disorder, with a best estimate of 60 per 10,000 for all autism spectrum disorders together (Fombonne 2005; see also

Fombonne 2003). Studies consistently find four to six times more males with autism than females (Baio 2012; Fombonne 2003; Fombonne 2005), with the ratio even wider among people with higher levels of support needs (Fombonne 2005).

Epidemiological information on autism in Italy – as in much of the world – is difficult to find. Arduino and Latoni (2009) review several epidemiological studies from

Piedmont, Marche, Tuscany, and Emilia Romagna from the mid-2000s, with prevalence rates ranging from 1.3 to 2.5 per 1000 minors, whereas a survey by the Italian Institute 87

for Political and Social Economic studies (EURISPES) found a prevalence of 6-10 cases of autism in 10,000 births (Meroni 2008). One reason for the difficulty in identifying prevalence rates in Italy is the history of epidemiology as a field of study, which is rather new in Italy and very regionalized (Saracci 2011; Saracci, Terracini, and Merletti 2011).

Many Italian sources cite U.S. or international prevalence rates (e.g., Levi 2005).

Those who identify the difference – namely, that Italian rates are so much lower than those in the U.S. and elsewhere – assign different meaning to them. Some (Arduino and

Latoni 2010; Levi and Bernabei 1997; Meroni 2008) argue that Italy is under-diagnosing autism, supporting this argument by conducting systematic testing in populations with other diagnoses (such as intellectual disability) to identify overlooked cases (Arduino and

Latoni 2010). Notably, scholars in the United States have argued that U.S. prevalent rates are too high, a case of “diagnostic substitution” where people who would previously have been diagnosed with intellectual disability are now diagnosed with the more desirable autism label (Rosenberg et al. 2009; Shattuck 2006; Wazana, Bresnahan, and Kline

2007). Others (Dufault et al. 2012) take the differences in prevalence at face value, and look for causal reasons the Italian prevalence is lower.

Anthropologists and social historians have done much to contextualize this story, as reviewed in Chapter 1. Notably, the anthropology of biomedicine and other social studies of science have complicated the very notion of diagnosis and epidemiology, noting factors such as local biology (Lock and Kaufert 2001), which call into question whether prevalence rates for presumedly biological conditions that are based on a study in one location can be assumed to apply globally, and looping effects (Hacking 1995), which notes that the definition of a category changes as its membership changes, and so 88

on, cyclically (Kirmayer 2006). Verhoeff (2012) questions whether autism can be considered a “natural kind” or an entity with its own essence at all, reviewing such conflicts as the “fractionation” of the core symptoms of autism (which do not correlate with each other in a single person) and the lumpers versus splitters debates in classification.

The newest step in the history of autism spectrum conditions is their reclassification in the DSM-5 as a singular “autism spectrum disorder” (ASD) that encompasses and streamlines the diagnostic criteria for four of the five DSM-IV-TR disorders, and excludes one, Rett Syndrome, due to its easily pinpointed genetic etiology.

The DSM-5 is nothing if not controversial, and the removal of the term “Asperger’s

Syndrome” is one of the heavily debated issues. While some people with Asperger’s may get a diagnosis of ASD, research indicates that people previously classified with

Asperger’s may be excluded from the DSM-5 diagnosis of ASD (McPartland, Reichow, and Volkmar 2012), possibly falling instead under the new “social communication disorder” (Frazier et al. 2012) but possibly receiving no diagnosis at all. Some critics of the new system fear that people who do not qualify for a diagnosis might therefore no longer qualify for services that would be helpful for them.

Although the DSM is an important resource in Italy, the Azienda Sanitaria Locale

(ASL, Local Health Unit) where I conducted my fieldwork relied on the ICD-10 or even

ICD-9 for classification. The use of the ICD-9 has caused difficulties getting a diagnosis of Asperger’s, because the term is not directly used therein. Much of the work of

Asperger’s advocacy organizations in Italy (e.g., Gruppo Asperger) over the past decade has been the struggle for recognition and diagnosis. The importance of Asperger’s and 89

diagnostic changes in the DSM-5 is discussed in more detail in Chapter 4.

In Chapter 1, a review of the anthropology of biomedicine revealed that despite globalized medical research and practices, and despite the popular notion of a homogenous “Western medicine,” local particularities remain important. The above history does not include much about Italy. The standard story talks about the United

States and Austria. A closer look reveals an even stronger presence of Austria, as not only Asperger but also both Kanner and Bettelheim were Austrian born. Indeed, one

Italian anthropologist (Cola 2012) calls autism il male austriaco (the Austrian disease) in reference to this geographical locus of authority.

There are, however, a few notable moments in the history of autism that are specifically Italian. One theory of autism that has captured scientific and public attention in the early 2000s links autism to “mirror neurons,” motor command neurons which fire when watching someone else’s action (rather than performing it oneself) and therefore facilitate empathy and imitation (Ramachandran and Oberman 2006). These neurons were first identified at the University of Parma, Italy, and scientists in Italy and elsewhere continue to study them and their role in the brains of people with autism (Rizzolatti and

Fabbri-Destro 2010).

Historically, the Italian physician Sante de Sanctis provided, at the turn into the

20th century, one of the earliest descriptions of children who would now be labeled

“autistic” (Feinstein 2010; Levi and Bernabei 1997). De Sanctis has also been called the

“padre della neuropsichiatria infantile italiana” (father of Italian pediatric neuropsychiatry) (Cimino and Lombardo 2004), which is the primary field that addresses autism in Italy (Levi and Bernabei 1997). De Sanctis’s role transitions us into the next 90

section, which takes us further back into Italian history to understand the emergence of this field of neuropsychiatry, as well as the distinct discipline of psychiatry, and the role of these fields and other actors in managing institutions, deinstitutionalization, and community mental (and developmental) health care.

Section 2: History of Italian Autism Services

To understand the history of autism in Italy, it is necessary to understand not only the history of neuropsychiatry, but also the history of institutions and psychiatry. Scholars have argued that before deinstitutionalization, people with autism in Italy were placed in mental institutions (Nardocci 2009; Russo, Capararo, and Valtellina 2014). Indeed, this argument aligns with Eyal and colleagues (2010) argument that the autism label emerged after global deinstitutionalization, when specific diagnoses became more important due to the variety of treatments instead of one treatment – institutionalization – for everything.

Autism provides a specific example of a consequence of this change, discussed more broadly in Chapter 1. However, Eyal and colleagues do not specifically address Italy despite the widespread popularity of its deinstitutionalization movement among global professional circles (WHO Working Group on Changing Patterns in Mental Health

1980).

Mental institutions in Italy have a long history. The first national law to address these institutions was passed in 1904, although Italy has increasingly been institutionalizing people with mental illness and disabilities from about 1860 to 1960 and both Church charities and local governments has created various types of services

(Donnelly 1992). Burti (2001) traces Italian psychiatry back to the 1789 S. Bonifacio

Hospital in Florence and the “enlightened principals of moral treatment.” Previously, care 91

for people with mental illness was mostly under the domain of the Church (Burti and

Benson 1996). Indeed, much of Italian healthcare before the mid-20th century was organized by the Church (Lo Scalzo et al. 2009). The 1904 Law 36 made psychiatric hospitals a matter of state security, designed to protect society from “dangerous” people.

It only allowed for involuntary admissions (Burti 2001; Donnelly 1992). The 1904 law remained the most important legislation governing mental institutions into the 1960s, leading into 1978’s famous Basaglia’s law, mandating deinstitutionalization (Burti and

Benson 1996; Burti 2001; Bollini, Reich, and Muscettola 1988; Crepet and De Plato

1983; Crepet 1990; Jones and Poletti 1986; Santone et al. 2005; Scheper-Hughes and

Lovell 1986).

These reforms were enacted differently in different places. Generally, the law was enacted more successfully in northern and central regions of Italy than southern. (Bollini,

Reich, and Muscettola 1988; Donnelly 1992).6 Donnelly (1992:96–97) also notes a division between its implementation in smaller towns versus larger metropolitan areas.

Whereas deinstitutionalization was accomplished most successfully in smaller towns, in larger metropolitan areas a division emerged between inpatient and outpatient services, which served largely different clienteles. Section 3 will turn to the management of autism services specifically following deinstitutionalization in my northern, primarily urban fieldsite. The remainder of this section looks at the parallel histories of the professional fields that dealt with institutions, deinstitutionalization, and community mental health

6 Per Italy’s National Institute for Statistics (Italian National Statistical Institute (Istat) 2013), Italy can be divided into three geographical regions of “North,” “Centre,” and “South and the Islands.” North includes Piemonte (Piedmont), Valle d’Aosta, Liguria, Lombardia (Lombardy), Trentino-Alto Adige, Friuli-Venezia Giulia, Veneto, and Emilia-Romagna. Centre includes Toscana (Tuscany), Lazio, Umbria, and Marche. South and the Islands includes Abruzzo, Molise, Compania, Basilicata, Puglia, Calabria, Sicilia (Sicily), and Sardegna. 92

care: neuropsychiatry and psychiatry. It then describes the emergence of a “niche” for autism within Italian medicine and Italian health and human services.

The Italian medical system distinguishes between neuropsychiatry and psychiatry, neuropsichiatria infantile and psichiatria. Neuropsichiatria infantile (child neuropsychiatry), abbreviated NPI but sometimes referred to simply as neuropsichiatria

(neuropsychiatry), addresses neurological, psychiatric, and developmental problems in children under age 18. Psichiatria (psychiatry) treats adults after reaching the age of majority on their 18th birthday. As such, it is tempting to simply distinguish child and adult psychiatry. However, neuropsychiatry and psychiatry actually have distinct origins and practices which make the transition to legal adulthood anything but simple (Nardocci

2009). As the names imply, neuropsychiatry links neurology and psychiatry. Adult psychiatry, however, does not. Participants – both professionals and parents – often noted that neuropsychiatrists took a more holistic view of the child, family, and context.

Psychiatrists, on the other hand, were often criticized for not knowing anything about autism, and for only wanting to prescribe medications. I stress the differences between psychiatry and neuropsychiatry in Italy both because they were vitally important to my participants and because they provide the most concrete and relevant example of the differences in biomedicine between Italy and other Western biomedical contexts where discussion of psychiatry are very different.

Italian psychiatry has its roots in the early 19th century (Donnelly 1992). Historian

Michael Donnelly (1992) provides a detailed history of Italian psychiatry and the 1978 deinstitutionalization law and the status of its enactment through the early 1990s. He demonstrates how early Italian psychiatrists designed the field to be “organicist,” “bio- 93

determinist,” and “positivist” – directly opposed to the “spiritualist” approach of the

Church. This decision was both scientific and political, as the Church and other professional groups had their own stakes in the care of the mentally ill (Donnelly

1992:29). The Italian psychiatric association, in contrast the French, barred psychologists

(Donnelly 1992:29). These were the psychiatrists working in mental institutions through the 1960s. This approach located the origin of psychiatric illness firmly in the biological, leaving no room for either psychoanalytic or social approaches to understanding or treating mental illness.

In the 1960s, a younger generation of psychiatrists emerged, most prominently

Basaglia. These psychiatrists aligned themselves with phenomenology and existential psychiatry, which Donnelly (1992:43) argues may have been the only real alternative to the positivism and bio-determinism of psychiatry at the time in Italy. It was within this framework that Basaglia and his colleagues conducted their pilot experiments in Trieste and elsewhere, gradually empowering patients, closing institutions, and “socializing” psychiatry. They crystallized their ideas into the ideology of Psichiatra Democratica

(Democratic Psychiatry). These efforts led to the passage of “Basaglia’s Law,” the 1978

Law 180. Democratic Psychiatry derived in part from a Sartrean philosophy, seeing the

“mental patient” construct as a manifestation of contradictions in society and the asylum as a means of removing these contradictions from view, maintaining the illusion of order.

In this approach:

[W]hat it requires is not sympathy for the mentally disordered or acknowledgement that they have been badly treated, degraded, abandoned. The point is that the category ‘mental patient’ itself should not exist; the indignation arises not against the fate of actual suffering people, but against the generally mechanism of ‘splitting’, which is the Manichean fault of existence. (Donnelly 1992:54) 94

The conflict between positivist and interpretivist psychiatry did not involve the sort of speculating on the “reality” of mental illness as in the UK and USA; there was no conflict between medical and social models of psychiatric disability nor influence from outside professions like social work (Donnelly 1992:59). The ideology of Democratic Psychiatry aligned closely with the students’ and workers’ movements of the 1960s – these patients were emarginati (marginalized) just as students, workers, immigrants, displaced persons, and so on – and therefore gained support from activists in these sectors as well (Donnelly

1992; Scheper-Hughes and Lovell 1986). These approaches later gave way to psychodynamic and psychoanalytic therapies, which previously did not have much of a foothold in Italy due to the psychiatric association’s strong rejection of non-organicist approaches. Feinstein (2010) argues these approaches were more welcome in the northern regions closer to France.

Most people with autism are diagnosed in early childhood, and it is the field and the administrative units of neuropsichiatria infantile, childhood psychiatry, that governs the care of children with autism. The website of the Società Italiana di Neuropsichiatria dell’Infanzia e dell’Adolescenza (SINPIA –Italian Society for Child and Adolescent

Neuropsychiatry) explains that they field addresses four main areas of child and adolescent health: neurology, neuropsychology, psychiatry, and rehabilitation. Per their website (Società Italian di Neuropsichiatria dell’Infanzia e dell’Adolescenza (SINPIA) n.d.), the conditions and disorders they address can be divided as follows, with their text in the first column and my translations in the second:

Figure 1: Domains of Child Neuropsychiatry

Neurologia Neurology epilessie, paralisi cerebrali infantili, Epilepsy, cerebral palsy, muscular distrofie ed altre malattie neuromuscolari, dystrophy and other neuromuscular distonie, cefalee, malattie disease, dystonia, migraines, neurometaboliche, sindromi genetiche, neurometabolic diseases, genetic tumori, encefaliti, etc. [sic] conditions, tumors, encephalitis, etc. Neuropsicologia Neuropsychology insufficienza mentale, disturbi specifici Intellectual disability, specific learning dell’apprendimento (dislessie, difficulties (dyslexia, dysorthography, disortografie, discalculie), disturbi del dyscalculia), language impairments linguaggio (disfagie, balbuzie, ritardi di (dysphagia, stuttering, language delay, linguaggio ecc) etc.) Psichiatria Psychiatry Autismo, psicosi, depressione, anoressia, Autism, psycosis, depression, anorexia, bulimia e altri disturbi del bulimia and other eating disorders, comportamento alimentare, disturbi obsessive-compulsive disorder, sleep ossessivo-compulsivi, disturbi del sonno, disturbances, anxiety disorders, phobias, disturbi d'ansia, fobie, malattie psychosomatic illnesses, relational psicosomatiche, disturbi relazionali, disorders, personality disorders, general disturbi di personalità, disturbi del behavioral disorders including attention comportamento in genere, inclusa deficit hyperactivity disorder etc., enuresis l’iperattività con deficit di attenzione, etc; and encopresis, mistreatment of and enuresi ed encopresi; maltrattamento e violence against minors and their violenze sui minori e loro conseguenze consequences Riabilitazione Rehabilitation Abilitazione e riabilitazione dei disturbi Abilitation and Rehabilitation of neuromotori, cognitivi, neuropsicologici e neuromotor, cognitive, psichiatrici neuropsychological, and psychiatric disorders

Autism is placed within the category of “psychiatry,” and most people with autism enter into the care of psychiatrists when they reach 18. Neuropsychiatry serves minors, whereas psychiatry serves adults. The transition from the care of neuropsychiatry to psychiatry can be rather abrupt and leave young adults with autism in a “black hole”

(Molteni 2011:106). An epidemiological study has shown that there are more individuals under 14 then over 14 with an autism diagnosis due to differing diagnostic practices in these fields and the idea that autism is only “infantile,” demonstrated that adult psychiatry 96

does not necessarily recognize or address autism in adults who had been served by neuropsychiatry in childhood (described in Moderato 2008:46); see also Arduino and

Latoni 2009; Molteni 2011:36–37).

While childhood neuropsychiatry is indeed the counterpart to adult psychiatry, more than just the age group served differentiates these fields. If Italian psychiatry has its roots in Basaglia and the ideology of democratic psychiatry, neuropsychiatry has its roots in Sante de Sanctis (psychiatrist), Giuseppe F. Montesano (psychopedagogue), and Maria

Montessori (pedagogue, creator of the “Montessori school” model used also in the United

States) and therefore bridges psychiatry and pedagogy (Bracci 2003; Migone 2014).

Neuropsychiatry emerged from the work of psychiatrists, psychologists, and pedagogues, initially as a subfield of psychiatry itself (Migone 2014; Storia » Società Italiana Di

Psichiatria n.d.). However, the field became so distinct that ultimately neuropsychiatry created an independent professional association, SINPIA, separate from the psychiatric association, SIP (Storia » Società Italiana Di Psichiatria n.d.).

Child neuropsychiatry – in the sense of the science of neurology and/or psychiatry in childhood and adolescence – has its roots in the 1800s as part of a broader movement across Europe and the United States (Bracci 2003) alongside greater attention to children and childhood (see Nadesan 2005). Italian neuropsychiatry first emerged at the turn of the

20th century. Psychologist and psychiatrist Sante de Sanctis, who provided one of the first descriptions of children that some now recognize as having autism (Levi and Bernabei

1997), has also been called the father of Italian neuropsychiatry. De Sanctis penned the book Neuropsichiatria infantile (1925) that gave the field its name, describing his observations of children then known as frenastenici, a term used to refer to cognitive 97

disabilities and distinguished from mental illness (Cimino and Lombardo 2004:15).

Similarly to the organicist psychiatrists Donnelly describes at this time, De Sanctis never joined the psychoanalytic movement in Italy, although reportedly he was often asked

(Cimino and Lombardo 2004:14). Even into the late 20th century, some neuropsychiatric units were under the same scrutiny from democratic psychiatry as institutions (Bracci

2003:15). Just as psychiatry took an interpretive turn in the 1960s and 70s with deinstitutionalization, so did neuropsychiatry. Fiorani (2011) traces this turn to the period immediately following World War II, in which several Italian psychiatrists were trained abroad in various countries and returned to Italy with these influences. Fiorani (2011) cautions against a reading of strict opposition between this new generation and the previous (like the general story of Basaglia’s generation in the history of psychiatry), but stresses the connections between this emerging field of child neuropsychiatry and the precursors of the early 20th century.

Giovanni Bollea has also been called the father of neuropsychiatry for his role in establishing the professional after World War II (Fiorani 2011; Migone 2014). Bollea

(1960, cited in Fiorani 2011) explained his legacy as such:

Sessanta anni fa, nel 1900, Sante De Sanctis apriva in Roma il primo Ambulatorio di neuropsichiatria infantile; dopo trent’anni, nel 1930, Cerletti a Genova e De Sanctis a Roma, inauguravano i primi due Reparti infantili universitari. Dopo altri trent’anni circa la Gazzetta Ufficiale dell’8 ottobre 1959 sanciva la richiesta della Facoltà Medica di Roma di mettere tra le materie di insegnamento universitario la neuropsichiatria infantile e qualche settimana più avanti il Consiglio di Facoltà, su proposta del mio direttore prof. Gozzano, affidava a me il primo incarico italiano di questa nuova materia. Sixty years ago, in 1900, Sante De Sanctis opened in Rome the first ambulatory service for child neuropsychiatry; after 30 years, in 1930, Cerletti in Genoa and De Sanctis in Rome started the first two university childhood departments. After nearly another 30 years the Official Gazette of October 8, 1959 sanctioned the request of the Medical Faculty of Rome to have child neuropsychiatry among the maters taught at university and some weeks layer the Faculty Council, at the 98

suggestion of my supervisor Professor Gozzano, entrusted to me the first Italian post for this new material.

Fiorani (2011) traces the emergence of child neuropsychiatry to a broader climate of increased attention to childhood and human development post-World War II. Fiorani

(2011) also traces the use of the term neuropsychiatry (as opposed to “pedopsychiatry” which he says is used all’estero, abroad) to Bollea’s desire to honor the distinctly Italian tradition and legacy following Sante de Sanctis.

Migone (2014) argues that child neuropsychiatry has taken more influence from

French psychoanalytic schools, whereas adult psychiatry has taken more influence from first German and then Anglo-Saxon psychiatries. Migone further explains:

La psichiatria dell'infanzia e dell'adolescenza in Italia quindi è stata caratterizzata da un ridotto uso di farmaci (se paragonata agli Stati Uniti), e da un diffuso uso delle psicoterapie ad orientamento dinamico, individuali e familiari (dalla metà degli anni 1970 si diffonderà la terapia sistemica). Estremamente importante è l'attenzione alla famiglia e all'ambiente sociale per comprendere il caso clinico durante l'età evolutiva. Child and adolescent psychiatry in Italy is therefore characterized by a reduced use of medications (if compared to the United States), and by a diffuse use of dynamic psychotherapy, both individual and family therapy (from the mid-1970s systemic therapy spread). The attention to the family and the social environment is extremely important for understand the clinical case during the developmental years.

The field can thusly be distinguished from psychiatry. It is known for being multidisciplinary and working in equipe, teams of psychiatrists, psychologists, social workers and so on which Bracci (2003:3) calls “l’elemento metodologico più importante e caratteristico” (the methodological element most important and characteristic). It incorporates psychoanalysis, psychotherapy, dynamic psychology, psychological testing, social interventions, and so on (Fiorani 2011). Neuropsychiatry incorporates psychologists and psychological approaches, but the history of psychology distances it 99

from psychiatry. Particularly in the fascist and post-war eras, psychology was considered a part of philosophy and not clinical practice (Fiorani 2011). Neuropsychiatry was also influenced by philosophy through Maria Montessori as she left child psychiatry for the field of philosophy and strict pedagogy (Migone 2014).

This integrated nature of childhood neuropsychiatry creates a very different environment than the singular field of psychiatry for adults, or indeed the singular field of psychiatry for children and adolescents. As Bracci (2003:19) explains:

La debolezza dei Servizi di NPI è più evidente laddove si prendano in considerazione patologie psichiatriche acute o che necessitano di un ricovero ospedaliero urgente. Raramente questi casi trovano collocazione presso le Strutture di N.P.I. e ciò per vari motivi: inidoneità strutturali, impedimenti logistici, scelte gestionali, confessionali per citarne solo i più comuni. La gestione delle acuzie psichiatriche, soprattutto in età prepuberale e in adolescenza, così come le gravi crisi depressive con rischio suicidiario o i gravi l’alimentazione, è ampiamente demandata alle strutture psichiatriche. The weakness of Child Neuropsychiatry Services is most evident wherever one considers acute psychiatric pathologies or things that require urgent hospitalization. Rarely in these cases does one find arrangements in Child Neuropsychiatry Services and this is for various reasons: unideal structures, logistical difficulties, managerial choices, and sectarian reasons to name only the most common. The management of acute psychiatric needs, especially in prepubescents and adolescents, such as serious episodes of depression with suicide risk or serious eating disorders, is largely deferred to psychiatric structures.

A full comparison of the histories and practices of neuropsychiatry and psychiatry is a dissertation unto itself, but to set the stage for the ethnographic data to follow I need to stress that my participants identified a sharp difference between childhood neuropsychiatry and adult psychiatry in practice, which I argue emerges somewhat from these different historical trajectories.

These histories heave led to the current situation in Italy. Parents, professionals, and youth I interviewed often argued that there is little public awareness of autism in 100

Italy. Autism is certainly not unknown in Italy, as the Italian language newsfeed I set up during my field work made clear to me, but the perspectives presented in this dissertation are those of people who are much more heavily invested in and aware of autism than the typical person. Autism in Italy has not, for example, produced a genre of “autism fiction” as it has in Anglophone settings (Hacking 2010; Ravanelli 2013). The remainder of this dissertation describes the emergence of a niche for autism and the way autism is conceptualized by professionals, parents, and youth operating within the niche. In order to set the stage, the final section of this chapter turns to the management of Italian autism services in the framework of generally disability services in Italy.

Section 3: Management of Italian Autism Services

The deinstitutionalization movement led to policies of social and educational integration. In place of the older institutions, people with disabilities are served by a highly regionalized national health care system in which the local health unit assigns individuals with disabilities a level of invalidità civile (colloquially called simple invalidità, invalidity) that grants rights to certain financial benefits (Crialesi et al. 2007).

This section discusses the current management of autism services in my fieldsite. It begins with a discussion of the function of the Azienda Sanità Locale (ASL, Local Health

Units), the rights granted to people with disabilities and their families under Italian Law

104, and the range of professionals and paraprofessionals involved in this work. It then discusses educational services in Italy, explaining the workings of the Italian school system in general, the rights granted to individuals with disabilities, and the educational figures youth with disabilities often encounter. Finally, it addresses settings outside of schools in which people with disabilities can receive services. In total, this section sets 101

the stage for readers to understand the environment in which my participants operated, preparing readers to delve into the ethnographic data presented in the rest of this dissertation.

The deinstitionalization policies of Law 180 were rolled into Law 833, which created the Servizio Sanitario Nazionale, the Italian National Health Service (Cosmacini

2011; Donnelly 1992). This service provides free, universal coverage for health care (Lo

Scalzo et al. 2009). In 1999, Law 229 set the standards for the Servizio Sanitario

Nazionale to support health for all humans regardless of economic circumstances

(Cosmacini 2011). The administration of health services is regionalized through aziende sanitarie locali (ASL), which Lo Scalzo and colleages (2009) translate as “local health enterprises.” These ASL coordinate public health services and specialist ambulatory services, which they either provide themselves or accredit public or private facilities to provide (Lo Scalzo et al. 2009). Dedicated multidisciplinary teams within ASLs coordinate mental and developmental health services (Lo Scalzo et al. 2009). However, many Italians (including many of my participants) pay privately for services due to long waitlists and dissatisfaction (Lo Scalzo et al. 2009).

For individuals with disabilities, ASLs assign a level of invalidità civile (civil invalidity/disability). Law 118 of 1971 defines invalidità civile as “the right to receive financial benefits when the disability is a consequence of biological damage with no reference to general self sufficiency,” in the words of Crialesi and colleagues (280). This invalidità is assigned on a level from 0-100 and grants various supports. Someone with a level over 33 can access work support programs. More importantly to my participants, someone with a level over 75 can receive pension benefits which help address costs of 102

living (though parents often still end up paying out of pocket) (Crialesi et al. 2007:280).

Financial benefits of pensione (pension) and indennità di accompagnamento

(accompaniment allowance) are paid by the Istituto Nazionale della Previdenza Sociale

(National Institute of Social Security).

The most important healthcare law for my participants was Law 104, passed in

1992. This law established a specific health care program for ASLs to deliver rehabilitative care to people with disabilities (Lo Scalzo et al. 2009). This law established the rights of people with disabilities, formalizing older provisions and setting the ground for future ones (Crialesi et al. 2007:274). Subsequent legislation further specified rights for people with disabilities and their parents. In 2000, Law 388 established several such regulations, including leaves up absence from work for parents, additional pension for workers with disability levels over 74%, employment quotas for businesses to hire people with disabilities, specific assistance at schools, equal access to public transportation, special parking reservation, among others (Crialesi et al. 2007:275–6).

Several professionals and paraprofessionals are involved in the execution of these services. Professionals in my fieldsite considered equipe, teams, to be the gold standard for coordinating services for people with autism. These equipe consisted of several types of professional figures, including neuropsychiatrists, psychiatrists, psychologists, professional educatori, rehabilitative therapists, professional nurses, ausiliari socio- assistenziali, social workers, pedagologists, supervisors, and responsible officers of the service itself. They may also include idiosyncratic team members, such as gym teachers, depending on the needs of the person and service (Di Furia and Montanari 2003:197).

These professionals work in a variety of contexts in schools, hospitals, social services, 103

and the community. The rest of this section addresses important institutional contexts for people with autism.

The Italian school system is divided into several levels, diagrammed in Figure 1. I have created this figure using the terms of categories that were important to my participants,7 and refer therefore to asilo nido, scuola materna, scuola elementare, scuola media, scuola secondaria, and the university levels of laurea and laurea magistriale.

These terms will appear through the following chapters of data presentation. In the next several paragraphs, I will draw from secondary source material to explain in more detail what these terms mean, and what alternate more technical) terms exist. Note that schooling is obligatory and compulsory at the elementary school and middle school levels, comprising 8 years from approximately ages 6-14 (UNESCO-IBE 2010). In 2006, the age for the end of compulsory schooling was changed to 16, therefore extending into the first two years of secondary school (UNESCO-IBE 2010).

Figure 2: The Italian Educational System

7 A similar and useful figure can be found in UNESCO, p. 14. However, UNESCO’s figure does not include any schooling before scuola maternal, whereas the vast majority of my participants attended asilo nido. Furthermore, UNESCO’s figure only uses English terms, and includes more information than is relevant for our discussion. 104

Up to 3 Years Asilo Nido 3 mos-3 yrs old (Nursery School)

3 Years Scuola Materna 3-6 yrs old (Preschool)

Scuola 5 Years Elementare (Elementary 6-11 yrs old School)

3 Years Scuola Media 11-14 yrs old (Middle School)

Istituto Liceo Istituto Tecnico 5 Years Professionale (Lyceum/High (Technical (Vocational School) Institute) 14-19 yrs old Institute)

3 Years Laurea (Bachelor) IFTS/ITS 19-22 yrs old

2 Years Laurea Magistrale 22-24 yrs old (Master)

Asilo nido can be glossed as nursery school and is available to children age three months to three years. The words literally mean shelter or haven (asilo) and nest (nido). Although early childcare services in Italy have a longer history stretching back to fascism and 105

before then to Church charity, asili nido as they are known today began with the passage of Law 1044 in 1971, which provided state funding to set up municipal (comunale) asili nido available to all children. However, asili nido have limited space. Attendance is neither compulsory nor guaranteed. Attendance is also not free, although it is heavily subsidized. Asili nido are not technically part of the educational system, but administered by the Ministry of Health. They are therefore more custodial than educational institutions

– at least as imaged by the Law 1044 – but there has been a trend since 1971 towards more a more educational role. Children with disabilities are given top priority for admission (though this could be both for custodial and educational reasons) and staff are known as educatori, derived from the same root word as education (Corsaro and Emiliani

2014). Asili nido can be either public or private. Many of my participants specified that their children attending asili nido run by le Suore (the Nuns).

Scuola Materna translates to maternal school and can be glossed as preschool.

Most of these schools are public. In 1968, Law 444 introduced state run scuole materne, and in 2003 Law 53 and in 2004 Legislative Decree 59 integrated scuole materne into the education system as part of scuola dell’infanzia (infancy school/pre-primary school)

(UNESCO-IBE 2010). These schools are not obligatory, but they are free so long as they are public (either a state school or a school that has been recognized by the state after meeting state requirements) (UNESCO). Some students with disability certificates take an extra year of scuola materna, colloquially called the anno di saldatura (welding year – a year that welds a bridge between pre-primary school and primary school) (Leonardi

2008:38).

Scuola elementare, elementary school, is obligatory and free. It lasts five years. 106

These years are referred to as prima elementare, seconda elementare and so on through quinta elementare, therefore first grade, second grade, and so on through fifth grade.

Scuola media, middle school, is also obligatory and free. It is part of the primary education cycle. It is more properly called scuola secondaria di primo grado, but this formal change is very recent, dating from a 2004 law (Treccani, n.d.), and many documents in fact still refer to it as scuola secondaria di primo grado (ex scuola media) –

Lower Secondary School (Ex Middle School). Many participants used the term scuola media. Scuola media is comprised of three years – prima media, seconda media, and terza media (first, second, and third grade). The third year of middle school ends with state exams which grant a diploma and access to upper secondary school.

Scuola secondaria, secondary school, is compulsory only for the first two years. It is most properly known as scuola secondaria di secondo grado (upper secondary school).

These schools generally take five years. The first two years are compulsory and free. The remaining three years cost. Secondary schooling divides students into different academic or vocational paths: liceo (Lyceum), istituto tecnico (technical institute), and istituto professionale (professional institute). There are several types of liceo, which are currently in flux following reforms starting in the 2010-2011 school year (UNESCO-IBE 2010).

Under the reform there are six types of liceo. Liceo classico (classic lyceum) is dedicated to the humanities and ancient languages, liceo scientifico (scientific lyceum) to the natural sciences, liceo linguistico (linguistic lyceum) to modern foreign language, liceo artistico (artistic lyceum) to the fine arts, liceo delle scienze umane (human sciences lyceum) to the social sciences, and liceo muscicale e coeutico (music and dance lyceum) to music and dance. After five years, students take state exams which grant a diploma di 107

istruzione liceale (lyceum diploma) (Leone 2010a). There have been various configurations of liceo over past years, but the gist remains that these schools last five years and focus on the arts, sciences, and humanities.

There are two types of istituto tecnico – economico (economics) and tecnologico

(technology). Economic schools focus on administration, finance, marketing, and tourism. Technology schools address a range of areas including mechanics, computer science, and agriculture. At the end of five years, students take the state exams and receive the diploma di istruzione tecnica (technical institute diploma) (Leone 2010b).

There are also two types of istituto professionale – servizi (service) and industria ed artigianato (industry and craft). Service schools include agricultural and rural development services, socio-sanitary services, hospitality services, and commercial services. Industry and craft schools include production schools and maintenance and technical assistance schools. At the end of five years, students receive the diploma di istruzione professionale (professional institute diploma). Studies can also receive qualifiche (qualifications) at the end of the third year and diploma professionali

(professional diplomas) at the end of the fourth year. Students at these schools do not necessarily take the state exams, though they may (Leone 2010c; UNESCO-IBE 2010).

The above discussion makes much reference to diplomas, called diploma in Italian or colloquially maturità. Students who pass the state exams receive diplomas. However, not all students with disabilities do sit for the exams or receive diplomas. While students with disabilities do receive diplomas at the end of the scuola media as long as they fulfil their individualized educational plans (IEPs, in Italian, PEI), at the end of secondary school there are two paths. Some students follow a path that can grant them a regular diploma, 108

whereas others follow a path that grants an attestato di frequenza (certificate of attendance) at the end of the academic cycle (Ministero dell’Istruzione, dell’Università e della Ricerca [MIUR] 2012).

Post-secondary education in Italy is split similarly to secondary education.

Following the 1999 Bologna Reform, Italian universities follow a 3+2 system similar to many other places in Europe. In most fields, the first three years grant a laurea similar to a U.S. bachelor’s degree, and a second two years grant a laurea magistrale similar to a

U.S. master’s degree (UNESCO-IBE 2010). Instead of the university path, students may also enroll in various types of vocational post-secondary education, such as Istituti

Tecnici Superiori (Higher Technical Institutes).8 Participants reported that there are even some post-secondary vocational programs specific for people on the autism spectrum.

In 1977, Italy passed Law 517 which abolished “the widespread use of special schools”

(Cornoldi et al. 1998). In 1992, Italy enacted Law 104, which provides for the education of all students (including students with disability) in the same public school system – including post-secondary education. This inclusive education system is called

Integrazione Scolastica (Educational Integration). Educational integration coincided with deinstitutionalization in Italy and reflects broader national goals of social integration

(Canevaro and de Anna 2010). English language literature has identified the Italian educational system as a model for inclusive education (Begeny and Martens 2007).

Although the term integrazione is often glossed as inclusion, D’Alessio (2008:57–58) explains that they are not exactly synonymous:

Inclusive education and integrazione scolastica present many similarities as they are both dynamic processes contributing to the realisation of a more democratic

8 See http://www.indire.it/its/ 109

society. Integration, however, is usually used to refer to the education of disabled students while inclusive education is concerned with all pupils. Despite the scarce literature about inclusive education in Italy, inclusion seems to be intended as a more radical and socio-political project that engages society as a whole and considers integration as just part of its project (Barberio, 2002). Nevertheless, previous Italian literature often seems to mistake inclusive education as a synonym of integration.

Although this dissertation does not focus on schooling, the school environment remains important to parents and youth with autism even after they have graduated or otherwise left school. Chapter 5 in particular will address parents’ experiences with school, which touch upon the particularities of Italian integration.

Several professional and paraprofessional figures are important to enacting integrazione scolastica. First are the regular classroom teachers. Teachers whose classrooms have a student with a disability are capped at 20 students, and usually there is no more than one student with a disability in the class (Cornoldi et al. 1998). To help the class run smoothly, the classroom receives a certain number of hours a week of assistance from an insegnante di sostegno (support teacher) per student with a disability (Cornoldi et al. 1998). In theory, the support teacher serves as an additional resource in the classroom for all students, and facilitates integration. In practice, support teachers often serve more as aides to the specific student (D’Alessio 2008). Students with disabilities may also interact with another educational figure whose role is, in fact, to serve as this sort of individual aide – the educatore (educator or tutor, from here on out referred to in the Italian). ISTAT uses the terms assistante educativo culturale (cultural education assistant) and assistente ad personam (personal assistant) to refer to professionals who help students one on one with issues of personal autonomy (ISTAT 2014), but my participants talked primarily about educatore. 110

Though the Italian system has been heralded as a model of inclusion, it is not without problems. Studies indicate that teachers are supportive of inclusion, but do not feel that they receive enough support to implement it practically (Cornoldi et al. 1998).

Researchers have also addressed specific recommendations for including students with autism in integrazione scolastica, including using un approccio ecologico (an ecological approach) (Farci 2005) and the implementation of the TEACCH approach (Panerai et al.

2009).

Though the school environment is overwhelmingly important for Italian youth, including youth with disabilities, it is by no means the only educational or institutional setting that impacts their lives. The rest of this section considers these other institutional contexts, outlining the “institutional path” of someone with a disability certificate in Italy.

Crialesi and colleagues (2007) identify 19 types of services available to people with disabilities in Italy: comunità socio educative per minori, comunità socio-riabilitativa per minori, comunità alloggio per minori, comunità familiare per minori, altre strutture per minori, Residenza Sanitaria Assistenziale, istituti per minori, Private Psychiatric

Inpatient Facilities, Comunità socio-riabilitativa per adulti, Non-Hospital Residential

Facilities, Comunità familiare per adulti, Residenza assistenziale per autosufficienti,

Residenza socio-sanitaria, altre strutture per adulti, comunità alloggio per adulti, comunità socio-riabilitativa per anziana, comunità alloggio per anziana, and Residenza

Sanitaria Assistenziale. My discussion herein addresses only those types of services that were commonly mentioned by and important to my participants.

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Figure 3: The Institutional Path of Someone with a Disability Certificate in Italy

• Early Intervention Pre-School- Age Minors

• Assistenza Domiciliare • Special Educational Programs School-Age • Comunità Socio-Educativa/Comunità Familiare Minors

• Centro Aggregazione Disabili • Centro Formazione Autonomia Younger • Centro Socio-Educativo Adults - Day • Centro Diurno Disabili

• Comunità Protetta/Appartamento Protetto • Communità Alloggio Socio Sanitaria Younger Adults - • Residenza Sanitario Assistenziali per Disabili Residential

• Residenza Sanitario Assistenziale per Anziani Older Adults

Many Italians with autism participate in some sort of early intervention program before the age of compulsory schooling (age 6). Common interventions include ABA,

TEACCH, logopedia (speech therapy), psicomotricità (psychomoro therapy) and psicoterapia (psychotherapy). These interventions continue as children get older, but are 112

most common among children under 8 years old (Fondazione Censis 2012).

Several services exist for school-aged children outside of those described above.

Children may have assistenza domiciliare (home help), in which an educatore comes to their own home to provide educational interventions or therapies, facilitate social activities, go on outings, and so on. This type of assistance is not necessarily limited by age, and younger or older individuals with disabilities may also access the service colloquially known as il domiciliare or by its acronym, ADH (assistenza domiciliare handicap – home help for people with disabilities). In addition to support teachers and educatore at school, some schools use specialized programs targeted at helping children with autism, particularly those using the TEACCH model (Panerai et al. 2009). Finally, there are also some residential services for minors. Comunità Socio-educative per minori

(socio-educative communities for cildren) are for children ages 6-18, and typically serve children ages 15-17 (Crialesi 284). These services are residential and also provide educational support. Comunità Familiare per minori are similar. There are also other types of residences for children but they don’t generally serve minors with intellectual and developmental disabilities.

There are four main types of day centers that serve adults with disabilities, sometimes including late adolescents generally starting no younger than 16. Centri

Aggregazioni Disabili (Centers of Aggregation for People with Disabilities) provide places for adults with disabilities to get together and socialize, while also promoting autonomy and providing individualized guidance for individuals with disabilities to navigate the broader community and integrate into its social fabric. Servizi di Formazione all’Autonomia (Services for Autonomy Training) provide people with disabilities training 113

aimed at social and workplace inclusion, and limit attendance to five years. Centri Socio-

Educativi (Socio-Educative Centers) provide a place for individuals with disabilities and higher levels of support needs to go during the weekdays and provide a range of activities. Centri Diurni Disabili (Day Centers for People with Disabilities) provide similar services from roughly 9AM to 4PM weekdays, but for people with even higher levels of support needs (Servizi per Disabili n.d.). My participants explained that Centri diurni disabili had more staff than centri socio-educativi based on the staff:attendee support ratio specified by ASL, operationalizing this higher level of support need. Of all these day services, I only knew of CDD that were autism specific during my time in the field; services for people with lower levels of support need were not autism-specific.

However, as we will see in the following chapters, there were autism specific social and recreational activity groups that were not necessarily municipal institutions like those discussed here.

In addition to day services for adults with disabilities, there are also several types of residential services. Comunità Protette (sheltered communities) are a type of

“assistance care” for people with disabilities with lower levels of support needs, generally those who need more healthcare assistance than social assistance in tasks of living

(Crialesi 283). Crialesi and colleagues differentiate comunità protette from residences that involve more social care, variously named casa alloggio, casa famiglia, or appartamenti autonomi. These communities are for people with higher levels of support needs. The names and specific divisions between these types of services vary regionally.

My participants talked about comunità protette (protected communities) and appartamenti protetti (protected apartments), small apartments which served people with 114

relatively low levels of support needs but offered some staffing during part of the day to help people with disabilities navigate independent living. They also talked about

Comunità Alloggio or Comunità Alloggio Socio-Sanitario (CSS) (Community Housing or

Socio-Sanitary Community Housing). These slightly larger apartments (sometimes up to

10 residents) have full-time staff who provide more services to residents with disabilities and coordinate other vocational, educational, and social activities in the surrounding community. Participants also talked about Residenze Sanitario Assistenziali per Disabili

(Assisted Living for People with Disabilities), which served a larger number of individuals with disabilities who needed a lot of socio-sanitary care in activities of daily living (Servizi per Disabili n.d.). I knew of both CSS and RSD that were autism-specific, as well as several short term residential opportunities for weekends or short weeks away to practice residential living skills.

Adults ages 65 and older with disabilities attend various types of facilities for the elderly including comunità socio-riabilitativa per anziani and comunità alloggio per anziani, comunità familiare per anziani, residenza assistenziale per autosufficienti, and residenza socio-sanitaria. (Crialesi et al. 2007). Adults with disabilities whose needs resembled those of the elderly may attend Residenze Sanitario Assistenziali per Anziani

(Assisted Living for the Elderly) even at younger ages. Others may continue to attend the same residences as when they were younger adults, listed above. (Servizi per Disabili n.d.).

People with autism encounter several different types of professionals in these settings. Psychologists and psychiatrists work at or with these services. As in school settings, educatori are extremely important. They work in day centers and residential 115

centers as well in home help situations. Day and residential centers may also employ staff who attend to the sanitary and health needs of the structure and individuals and have a range of specific certifications allow some variation in what they can and cannot do:

Ausiliario Socio Assistenziale, Operatore Socio Sanitario, and Assistente Sociosanitaria.

While in theory educatori provide educational services and these other staff provide sanitary and assistive services, many staff in both roles frequently stressed to me that in practice everyone works together on their common goals with people with disabilities.

Most of these services are not autism specific. However, a niche for autism is emerging.

This dissertation takes place within that niche, exploring autism-specific services for adolescents and youth on the autism spectrum. The settings in which I conducted participant observation were day centers, residential centers, and social/recreational activity groups. The rest of this dissertation provides an experience-near account of these settings, drawing also on interviews with autism professionals, parents of attendees with autism, and attendees with autism themselves. The following chapter describes research design and methods, and describes in more detail the specific services in which I researched.

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Chapter 3: Research Design

Section 1: Conceptual Framework

How is autism conceptualized in Italy? How do people defined as autistici and their families define, manage, and experience that label? How does new biopolitical theory apply, or not, to social organization around autism in Italy? As described in

Chapter 1, these questions emerge from meaning-centered traditions in anthropology and therefore require a meaning-centered research design. This study of autism-specific settings in a region of northern Italy seeks to answer these questions while generating a thick description of the lived experiences of key stakeholders affected by autism: autism professionals, parents whose children have autism, and people with autism themselves.

The present study takes an interpretivist framework. Because I ask how autism is defined, I do not begin with a pre-set definition. I did not perform ADOS or similar evaluations on my participants to “confirm” their diagnosis before moving forward with the interview. Instead, I operationalized autism by asking the staff to identify participants with autism whose parents and/or themselves would be eligible for interviews. I did not exclude individuals who “self-diagnosed” themselves with an autism spectrum condition, that is, did not have an official diagnosis from a licensed practitioner. This phenomenon has been much discussed in the literature (e.g., Cola 2012; Hacking 2010; Kapp et al.

2012), particularly in the case of Asperger's Syndrome. Excluding such individuals as not

“really” having autism imposes, rather than explores, the definition. As will be seen in the following chapters, these decisions allowed me to focus my interviews on understanding why and what that term means to them, and access narratives of disagreement over a particular individual's diagnosis, both between parent and staff and even between staff 117

and diagnosing professionals.

This study investigates new biopolitical theory, which engages with the broader concepts of identity and subjectivity. Many choices in the research design emerge from the anthropological literature on these concepts. Adolescents and youth constitute the best age group in which to study such questions because identity has been recognized as an important component of this life stage (Bucholtz 2002; Erikson 1968). More specifically, research has suggested that autism identity discourses may be most meaningful starting at adolescence (Baker 2006). The choice to research in autism-specific sites isolates autism discourses in a place where autism is actively and already the central focus. It both selects a location in which new biopolitical subjectivity is more likely to occur (social organization around autism) and avoids essentializing the identities of participants to only those of “people with autism” by focusing on spaces where the theme of autism is already central. In this way, the research design acknowledges that identity is a function of the situation, not the person (Bucholtz and Hall 2006). This study can therefore be called a part of the anthropology of youth (Bucholtz 2002), a field reviewed in Chapter 1, because it considers the lives of these adolescents and youth as it relates to life stages and transitions out of childhood and/or into adulthood (common to the anthropology of adolescence), but takes a place-based approach that allows the researcher to focus on the specific issue and/or identity of interest to the research questions (common to youth cultures).

This study takes a cross-sectional approach, which allows for a broad picture of the social world of autism in Italy while still remaining focused on autism-specific spaces. It allows for many important dimensions of comparison. Demographic 118

dimensions of comparison are certainly important. Many scholars have noted that neurodiversity narratives in particular are more important or appropriate to people who are ‘high functioning,’ although there are also ‘low functioning’ individuals who support neurodiversity and ‘high functioning’ individuals who do not (Fenton and Krahn 2007;

Ortega 2009). The aggregated data set will allow for comparisons based on demographic factors of both parents and participants including age, sex, religion, and domains of functioning (specifically verbal/non-verbal). Moreover, the cross-section of autism- focused sites allows for comparison between different types of autism spaces with different goals.

However, this cross-sectional design also excludes many important dimensions of comparison. I do not have the data to compare the experience in autism-specific settings with mixed-disability or fully integrated settings, except through the narratives of parents who had experiences in multiple settings. A systematic comparison would be fruitful and is a direction for future research I propose in the conclusion. I have also focused on only one age group, and can draw conclusions only on the behaviors and perspectives of parents of adolescent and adult children. A comparison with parents of younger children in the same region would be fruitful as well.

In terms of cross-cultural comparisons, I only collected data in Italy and therefore do not directly relate participant responses to a comparable sample in other countries.

However, I do relate their responses to themes in the literature, seeking to determine of my participants' responses are more concordant or more discordant with themes in the literature on new biopolitical theory derived from a range of settings. In doing so I follow the example of Bonaccorso (2009) in her study of new reproductive technologies in Italy, 119

exploring the proposition of previous scholars that Northern and Southern European approaches may differ with respect to their conceptualization of biomedicalization. I do not explicitly compare Italian perspectives on the definition, etiology, and treatment of autism with U.S. sources, except when writing about how my participants discuss these sources.

Section 2: Methods

Data were collected using participant-observation, interviews, and one focus group. In this section, I begin by describing site selection and participant observation, then subdivide the discussion of sampling and data collection for each of three respondent groups: (1) professionals who work with autism; (2) parents of youth with autism; (3) youth with autism themselves. All parts of the study were approved by the

Case Western Reserve University Institutional Review Board.

Participant-observation

Based on my pilot research, I identified three main categories of services available to people with autism spectrum conditions: Day Centers, Residential Centers, and Social/Recreational Groups. A more detailed description of these service types is available in Chapter 2. To obtain a cross-section of these experiences, I conducted participant-observation and recruited interviewees from three Day Centers, Two

Residential centers (which also offered day services), and two Social/Recreational

Groups. Organizations were included if they marketed themselves specifically to people with autism and had attendees within the desired age group of 14-34. I gained entry to the organizations via the coordinating staff. I did not exclude any organization that was interested in participating. 120

Participant observation aimed at gaining an experience-near perspective, accessing the subjective experience of attendees with autism through joint participation, and building rapport to set the basis for future interviews. Observations focused on activities undertaken, social interaction between the people with autism, role of other participants (aides, therapists, etc.), topics of conversation, and conceptualizations of autism referenced. The specific activities hosted by each site as well as my role as a researcher varied substantially. Therefore, detailed descriptions of the fieldsites are presented in Section 3, below.

Staff and Other Professionals

From each group I interviewed two staff members (total N=14). I sought staff at two levels of administration: one close to the founding and administrative structure of the organization and one close to the daily operation and client-focused aspects of the organization. I interviewed coordinators, educatori, and personal care aides. I further contextualized my findings with interviews with other autism professionals and advocates working in the area (N=31). This sample was obtained through chain referral. I did not exclude any professional or advocate who wanted to participate. All professionals worked in Italy and spoke Italian, but three were born outside the country.

Staff and other professionals were interviewed using the same interview guide, with questions focused on the organization's history, daily operations, and goals; the definition, diagnosis, and treatment of autism; the professional's relationship with parents and connection to other services; and personal history of involvement with autism services. Detailed interview guides can be found in the appendices. Interviews were audio-recorded when the professional consented, and lasted between 17 and 257 minutes. 121

Table 1: Demographic Profile of Interview Participants (Professionals) Profession Coordinatore (Coordinator) 8 Educatore (Tutor/Aide) 7 Neuropsichiatra infantile (Child 5 Neuropsychiatrist) Psichiatra (Psychiatrist) 5 Psicologa (Psychologist) 5 Insegnante (Teacher) 3 Pedagogista (Pedagogue) 3 Other/Volunteer Position 2 Presidente dell'associazione (President of 2 Advocacy Association) Psicomotricista (Psychomotor Therapist) 2 Ausiliario Socio-Assistenziale (Social Services 1 Auxiliary) Consulente (Consultant) 1 Insegnante di Sostegno (Support Teacher) 1 Logopedista (“Speech Language Therapist”) 1 Pediatra (Pediatrician) 1 Riabilitatrice Psichiatrica (Psychiatric 1 Rehabilitation Therapist) TNPEE (Neuropsychomotor Therapist) 1

Age Range 24-71 Years Mean 47 Years Median 45 Years

Sex Female 31 Male 14

Parents/Guardians

Client eligibility was the basis for both client and parent recruitment. Eligible clients were those between 14 and 34 years of age with a diagnosis (or self-diagnosis) of an autism spectrum condition as identified by the staff. The specific ages I use as boundaries emerge from the Italian context. At age 14, young people (including those with disabilities) exit middle school and begin high school and/or early admission into 122

day centers. Many Italian municipalities (e.g., Romano and Natilli 2011) consider all young people under 35 to be “youth,” and there are special scholarships and initiatives

“for youth” meeting this age requirement (Comune di Milano 2012).

When possible, I selected three verbal and three non-verbal participants with the goal of interviewing the verbal participants in addition to their parents, and interviewing only the parents of the non-verbal participants. Language functioning is arguably the most significant factor distinguishing level of severity of ASD (Twachtman-Cullen and

Twachtman-Reilly 2007). At sites in which fewer than 3 non-communicative clients were present, a greater number of client interviews were conducted. At sites in which fewer than 3 sufficiently communicative clients are present, only parents were interviewed. This classification of verbal or non-verbal was initially determined by staff. However, in one case staff and parent disagreed, and I have classified the respondent’s child as verbal following the parent’s assessment and the centrality of the child’s (limited) speech to the parent’s narrative.

Both parent and youth were interviewed using semi-structured guides loosely based on the McGill Illness Narrative Interview (Groleau, Young, and Kirmayer 2006) and Kleinman's Questions (Kleinman, Eisenberg, and Good 1978), with additional questions of my own design addressing the choice of and experiences with services.

Parent interviews included additional questions on pregnancy and early childhood.

Interview guides were modified during the course of the research to improve clarity, minimize respondent fatigue, and respond to respondent priorities. Detailed interview guides can be found in the appendices.

I conducted a total of 38 interviews with parents/guardians. In 26 interviews only 123

the mother participated, in three only the father, and in nine both parents. Interviews were audio-recorded when the parent consented, and lasted between 46 and 250 minutes. Two interviews were with the non-biological parents of the child with autism, and questions on pregnancy and birth were adjusted to ask about their knowledge of these circumstances not their direct experience. Both adopted children were born out of the country and adopted by Italian parents. Five other parents were born out of the country, though due to Italian wartime migration (see for example Schneider 2000), some were born to Italian parents and could therefore claim Italian citizenship. 124

Table 2: Demographic Profile of Interview Participants (Parents) Age Range 39-79 Years Mean 56 Years Median 55 Years

Sex* Female 35 Male 12

Religion Catholic 30 Catholic, Non-Practicing 3 Other Christian 2 Other Non-Christian 2 Atheist 1

Income €0 - €15.000 4 €15.000 - €28.000 10 €28.000 - €55.000 8 €55.000 - €75.000 3 Più di €75.000 5 Don’t Know/No Response/Not Asked 8

Type of Site from which Recruited** Day Center 16 Residential Center 11 Social/Recreational Group 12

Age of Child Range 14-33 Years Mean 23 Years Median 22 Years

Sex of Child Female 10 Male 28

Child Verbal? Yes 27 No 11 * Total exceeds total number of participants due to the nine couples. ** Total exceeds total number of participants because one participant attended two sites.

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Youth with Autism

I conducted a total of ten individual or group interviews with youth with autism diagnoses or self-diagnoses. Interviews were audio-recorded when the youth consented, and lasted between 23 and 95 minutes.

Previous research with adolescents and young adults with autism and developmental disabilities in institutional settings has found focus groups a useful tool because clients may be more comfortable speaking in groups (Llewellyn 2009; Ruef and

Turnbull 2002). I therefore intended to use focus groups in this study as well. However, it was found unfeasible both because many sites did not have enough eligible participants to form a productive group and because, as will be detailed in Chapter 6, many of the youth with autism I met were less, not more, comfortable interacting with each other than with me or with staff. The one focus group I did conduct was at a Social/Recreational

Activity Group, and had four participants, only two of whom stayed for the entire 92 minutes. Individual interview and focus group questions can be found in the appendices.

Demographic data on participants in individual and group interviews are aggregated together in the following table. Two of the youth reported receiving a small income from their work at internships. Four youth were actively students. Three youth did not report schooling or employment (the three attending day centers). 126

Table 3: Demographic Profile of Interview Participants (People with Autism) Age Range 14-20 Years Mean 18 Years Median 18 Years

Sex Female 2 Male 8

Religion Catholic 5 Catholic, Non-Practicing 1 Other Christian 1 Other Non-Christian 1 None/Don’t Know/No Response 2

Type of Site from which Recruited** Day Center 3 Residential Center 0 Social/Recreational Group 7

Youth and parents were both recruited based on youth characteristics and in this sense the interviews were paired. While most parent interviews did not have a corresponding interview with that parent’s child, all youth interviews did have a corresponding interview with that youth’s parent or parents. The interview topics and questions largely overlapped, asking about experiences in obtaining a diagnosis, characteristics they associate with the diagnosis, general life experiences, and experiences and opinions about organizations in which they participate. Interviews with parents had additional questions youths’ early lives and the parents’ experiences with obtaining a diagnosis. The overlap in questions allows for some meaningful contrast between parental narratives and youth narratives. I do not directly compare what one youth said about him or herself with what that youth’s parents said about him or her; rather, 127

responses are aggregated. The parent/guardian interview is also intended to contribute to the understanding of the experiences of people with autism, and so I draw on information from parent interviews in Chapter 6, which is dedicated to youth, both to further contextualize the narratives of youth interviewed and to comment on the experiences of youth who were not interviewed.

Data Analysis

Data were analyzed in several ways which mutually reinforce each other and the validity of the findings in this study. Data analysis methods included: (1) Inductive coding; (2) Deductive coding; (3) Frequency tallies of certain inductive codes; (4)

Average percentage coverage per interview of deductive codes; (5) Pearson’s correlations of various indicator variables with the output variable of percentage of each interview coded with deductive codes. Coding was performed with the assistance of NVivo 10 qualitative data analysis software. Statistical analysis was performed with the assistance of SPSS 22 statistical analysis software.

Methods (1) and (2) provide rich qualitative data into participant experiences relative to the research questions. Methods (3), (4), and (5) provide metrics that offer some quantitative support to thematic findings. The purpose of these data analysis strategies is not to engage in a quantative research design, but to bolster the qualitative analysis through greater transparency of the numerical aspects of the coding schemes, to identify relevant avenues for qualitative exploration that thematic coding along may not have uncovered, and – in the case of method (5) – to generate hypotheses for future research.

Inductive, emergent coding was performed to answer research questions (1) and 128

(2). For emergent coding, all data were first coded openly (Emerson, Fretz, and Shaw

1995), directed by theoretical interest in themes regarding autism meaning and social life, including: definitions and conceptualizations of autism; goals of individuals and organizations; and identity as defined by subjective reports of feelings of group membership and presentation of self. This initial coding generated a list of emergent codes, which were grouped and organized into a codebook, available in the appendices.

Deductive, a priori coding was performed to answer research question (3). For a priori coding, coding categories were created based off of the literature on biosociality, biological citizenship, and new biopolitical theory (LeCompte and Schensul 1999; Weiss

1995), detailed in Chapter 7. All data were then coded using this codebook, also available in the appendices. Both supporting evidence and negative cases were sought. I determined the frequency and overlap of themes and negative cases (Chapter 7, Section

2) using nVivo 10 query tools.

For both inductive and deductive coding, I maintained a “coding notes” notebook in addition to maintaining the two codebooks referenced above. In this document I maintained a detailed log of my coding progress and process. I noted which themes emerged from my preliminary work with the data as I collected and created it; catalogued themes that were added, dropped, changed, combined with another, or split into multiple through this process; documented details of the recoding I conducted to ensure consistency of the coding over time; and explained rationales for coding decisions. This documentation process enhances the validity of these analytical methods by increasing transparency of the coding process and providing a concrete reference for me to ensure my own consistency in coding over time. The process of coding and recoding over time 129

also ensures this consistency over time and across documents, as documents that were coded earlier were recoded to ensure their consistency with changes to the coding schema made later.

In Chapters 4-6, I address several aspects of research questions (1) and (2) through tables reporting frequency tallies of various codes regarding characteristics, causes, and treatments of autism as well as some aspects of parents’ interactions with services (such as how they heard about the service and their goals). These tables were all constructed in a similar manner, drawing from emergent coding. As can be seen in the codebook in Appendix 2, emergent codes included “What is Autism,” “What Causes

Autism,” “Treatment and Management,” and a code dedicated to “Services” including subcodes “Heard About” and “Goals for Participation.” After initial coding to identify segments of fieldnotes and interviews (as appropriate) that discussed these topics, I coded subthemes under each code relating to specific characteristics, causes, or treatment strategies, and again for specific ways parents heard about services and specific goals they mentioned. For characteristics, causes, and treatment I then classified each response based on the relevant axes of the commentary: in short, whether the participant supported or did not support the characteristic, cause, or treatment they mentioned with respect to autism. As the chapters below show, these responses were not always binary. Intermediate responses are explained in more detail with respect to each specific table.

In Chapter 7, I report on the details of the a priori codebook of new biopolitical themes. I compare the relative strength of each theme in participant narratives by averaging the percentage of each interview coded with each theme.

Finally, I determined the association between themes and participant 130

characteristics using SPSS 22 statistical analysis software. Pearson’s correlations with different themes were performed to understand if any systematic differences can be found between those who exhibited narratives concordant with new biopolitical and those who did not on the basis of several key demographics, described in more detail in Chapter 7.

Details of these models and the operationalization of variables are presented in Chapter 7 with the results.

Dissemination of Results

I have taken many steps to share the results of this study with Italian collaborators and an Italian audience more broadly. The most transparent of these steps is the research website I maintain in Italian at arielcascio.wordpress.com. I use this website to post announcements of upcoming presentations and publications deriving from this research, including this dissertation. I strive to provide translations of English language abstracts into Italian to make my progress more accessible to an Italian audience, and I provide more detailed Italian language summaries for some works. I have also shared copies of some works directly with research collaborators, including the first version of this completed dissertation and an Italian language summary of it. In these ways I seek to disseminate my research in a manner that increases transparency, accessibility, and communication with specific individuals and organizations in Italy as well as an Italian audience more broadly.

Limitations

Some limitations bear noting. Firstly, data were collected by a single researcher, which brings several advantages in terms of the depth of understanding of the fieldsite, strength of rapport, and richness and validity of qualitative data. However, it also raises 131

the possibility for error and imprecision in coding. I have minimized this possibility through recoding the earlier coded sections to ensure consistency with coding practices at the end of the analysis and through careful maintenance of a codebook detailing my decision-making process. Nonetheless, the possibility for error and imprecision remains.

For this reason and the sampling limitations described above, findings from this study should be considered tentative and hypothesis-generating, not definitive or hypothesis- testing. Secondly, any quantification strategy for the presence of thematic codes in interviews may be limited in these semi-structured interviews, because several other factors may impact the length at which an interviewee speaks. For example, parent interviews conducted at the site from which they were recruited were shorter than interviews conducted at other locations (the parent’s home, their workplace, or a public place).9 Additional variation occurs in data collection variability in that some interviews were not audio recorded, and some interviews were audio-recorded and then spot transcribed such that portions of the spoken interview not relevant to the research topics were not transcribed. However, comparing the presence of themes using percentage of the interview coded attempts to mitigate these differences by looking at the proportional, not absolute, weight of themes. For this reason as well, findings from this study should be considered hypothesis-generating, not hypothesis-testing. Finally, this research design which intentionally seeks people participating in autism-specific services is limited in that it does not speak to the experiences of all people affected by autism in Italy, but only

9 Of the parent interviews, excluding those unrecorded interviews whose length of time was not noted, 20 were conducted at the site from which they were recruited, eight were conducted at home, four in a public place, and two at the parent’s place of work. Length of interview was significantly (p < .012) shorter at the Site. Of the youth interviews for which times were recorded, five were conducted at the site and three in other locations (the youth’s home, the anthropologist’s home, a public place). The difference in interview length was not significant for youth interviews. 132

this particular group. Morever, it addresses the way autism is defined, managed, and experienced by people directly involved in the social world of autism, either personally or professionally, and therefore not necessarily reflective of all Italians’ perspectives. The results should be interpreted as such.

Section 3: Description of Fieldsites

Over the course of 11 months, I conducted participant observation at seven sites: three Day Centers, two Residential Centers, and two Social/Recreational Groups. My experiences at each site were unique, therefore I describe then in detail in this section.

Variability in the amount of time spent per site derived from the staff's availability, the number of hours in which the site was open per week, and the presence of holidays during the observation period. I dedicated 2-3 days per week to each site. Table 4 details the time I spent at each site.

133

Table 4: Time Spent at Each of 7 Sites

Site Weeks Avg. Hours per Week Total Hours Day Center 1 4 9 36 Day Center 2 11 12 131* Day Center 3 13 14 178* Residential Center 1 19 6 117 Residential Center 2 8 18 148 Social/Recreational 14 7 102 Group 1 Social/Recreational 18 14 252 Group 2 Total Hours 965 * Day Centers 2 and 3 total hours include interview times as interviews were conducted during regularly scheduled observation hours.

Day Center 1

History and Administration

Day Center 1 is a Centro Diurno Disabili (Day Center for People with

Disabilities), accredited by the municipality. Day Center 1 was the first day center that I visited, and I am grateful to the staff for their patience with the many types of ignorance I brought with me, linguistic and technical. Day Center 1 is semi-residential, meaning that it provides full-time service nearing 40 hours a week. It hosts up to 15 adults with autism, providing both vocational/abilitative and personal care services. It was founded in the late

1990s by a Cooperativa, and employs educatori as well as personal care aides (generally certified as ASA – Ausiliario Socio Assistenziale, Social and Assisted Care Aide; OSS –

Operatore Socio Sanitario, Social and Health Care Operator). The cooperativa that ran

Day Center 1 also provides services outside the day center both for people with autism

(evaluations, services for children, services for schools) and in mixed disability groups 134

(another day center, trial weekends in apartment living, vacation and free time activities).

Day Center 1 documents refer to the people with autism who use their services as ospiti, as will I in this section.

My Typical Week

As in many sites, at Day Center 1 was generally described as “tironcinante,” an intern. I conducted this internship for approximately 9 hours a week, for a period of four weeks, per my agreement with the staff. I took notes, spoke with the staff, set up and helped run workshop activities, accompanied the ospiti who left for external workshops, and learned to help some of them with their needs on these trips.

Before the first day, I was advised that the ospiti didn't interact much with each other, but that there were group activities and I was welcome to observe. I was also advised that, as a novità (a novelty; a new feature of the environment), the ospiti might be upset by my presence. Therefore, the staff would insert me “piano piano” (gradually), at first just observing and then getting more directly involved. I was still surprised at how quickly I was integrated into the setting. With some of the ospiti, I interacted from the first days. Others I came to know more gradually, and still others I hardly interacted with at all due to their difficulty with such an invasive presence.

Each day, I entered around 9am just as accoglienza (welcome) began. Some ospiti generally arrived before me, but many arrived after. Ospiti arrived on pulmini (Pullmans; shuttle buses) provided by the municipality, or with their parents. One or two parents might poke their heads into the room to say hello or talk to the staff.

Accoglienza consisted of tea and biscotti.10 One of the ospite set the table from a

10 Biscotti refers to cookies broadly in Italy, not just the hard sticks of bread available in U.S. cafes. 135

box staff have prepared full of instructions and the necessary components in the appropriate quantities. He also set up a daily calendar indicating the date, day of the week, and weather. Another ospite set up a similar board on the other side of the room.

Once weekly, I accompanied a group of ospiti to percorso motorio (obstacle course) at a nearby gym. When we returned, the room was set up for an activity called catena (chain; assembly line), a collaborative exercise that all of the ospiti completed together. On another day, the entire morning was dedicated to a creta (ceramics) outing for six ospiti, and I accompanied them three of my four weeks. The ceramics workshop was located across town, and five of the ospiti took public transit with the staff in order to arrive. The sixth met us at the creta workshop, then we all traveled back together.

Staff ran two workshops focused on domestic tasks. I always assisted with the first, Attività Domestiche (Domestic Activities), in which six ospiti hung laundry, cleaned a table, and swept a floor in that order. After Domestic Activities, there was a brief break and then a slightly different group of six ospite joined a different staff member in a different room for Riordine Centro (Cleaning up the Center). Rather than working in sequence one at a time, several ospite worked concurrently on separate tasks as assigned by the staff, such as putting away dishes, folding and putting away laundry, putting away groceries in fridge, freezer, or shelf as appropriate, and setting the table.

On the days I did not go to this workshop, I stayed in the main room with other ospiti who worked on lavoro indipendente or tempo libero. Lavoro indipendente consisted of cognitive and motor tasks, even computer skills, that the ospiti had previously completed with the help of operatori until they had mastered them. Tempo libero activities were often puzzles, games, or magazines. Almost all of the activities 136

were donated or constructed from donated and recycled materials such as old magazines and plastic food containers.

Day Center 1 also engaged its clients in several other activities in the afternoons and other days, including group tempo libero of listening to music chosen in turns (those who can choose their own favorite songs, the others with input from parents and staff who know them well), a social skills workshop involving a simulated trip to a store with a staff member as shopkeeper, group games such as Tombola11 with both social and cognitive skills goals, trips to a swimming pool, another Cleaning Up activity located in an apartment run by the Cooperativa that increases the generalizability of domestic skills, and a “manuality” workshop in which the ospite created objects they could take home.

Day Center 1 also organized activities for the parents, including group plenaries two or three times a year, individual meetings to discuss individuals educational plans and outcomes at least twice a year, and parent counseling services.

Day Center 2

History and Administration

Day Center 2 is also a Centro Diurno Disabili, run by a cooperativa and recently accredited by the local health board. It is housed in a large building that is also home to another CDD and a short-term residential setting for emergency relief. There are 16 utenti at this CDD. The CDD at which I worked was dedicated to autism and similar pathologies. This particular project of the cooperativa was founded in the early 2010s as

11 Tombola is a matching game, often translated as Bingo. However, I have chosen to leave it untranslated here. Although the rules are substantially similar, in every iteration of Tombola I have seen played, the goal was to fill the entire board, not simply one of the winning combinations of bingo. Moreover, the game does not including the calling out of “tombola!” as in the U.S. bingo version. Finally, Italians recognize a very important difference in the relative roles of Bingo and Tombola – Bingo is a gambling game played in casino settings, Tombola a recreational game among friends a family. 137

an experimental program, and accredited shortly thereafter. Day Center 2 documents refer to the attendees with disabilities primarily as utenti, which is the term I will use herein.

However, some of the documents in the structure most directly aimed at the utenti use the word ospite, such as the sign for their bathrooms.

My Typical Week

At Day Center 2, I served as a volunteer. I stayed primarily in the dining room and the two rooms generally used for free time and group activities, talking with the staff and utenti, observing, and taking notes. I also assisted the staff psychologist on some days with the activities she conducted.

I stayed at Day Center 2 all day twice a week. Once weekly the staff psychologist was also present, and I sometimes accompanied her to work in other rooms. I also stayed late to attend weekly équipe (team)12 meetings in which all the staff met to discuss specific cases, upcoming special events, and operational details included proposed changes.

Each day I arrived around 9:00 or 9:30. The utenti were beginning to arrive, mostly by Pullman. The first activity was accoglienza, an early morning snack of waters and cookies, and creating the agendas. Staff worked with the utenti to have them create their own agendas for the day. One morning’s agenda involved an excursion to the swimming pool for about half the utenti, an activity on which I never accompanied them.

The swimming group ate lunch early. In the morning, a subset of the utenti participated in a cooking workshop and made the panini for this meal. Other lunches were delivered by a caterer. Another morning activity was chorus, in which some utenti from this CDD joined

12 A French loan word. 138

those from other CDD for chorus practice in another part of the building. Other stayed in the CDD and worked on free time activities such as puzzles and individual games, or had group activities such as body painting in which utenti and operatori paint one another, an activity that engaged both relational skills, sensory integration, recognition of colors and body parts, and self-determination as the utenti made several choices regarding who painted whom with what color and where.

During the morning activities, utente left one by one to work with a dedicated staff member in the spazio lavoro. The work tasks were set up in discrete and clearly labeled boxes, and the utente had a quiet, clean space in which to work from left to right on completing the tasks (such as sorting or dexterity skills). Although a staff member was present to help, the goal was for each person to complete the task as independently as possible.

Staff described the lunch set-up as “self-serve.” Utenti in turn prepared themselves a lunch tray and asked the kitchen staff for first and second courses. At the dessert course, staff generally brought the dessert around and asked each person to choose between at least two options of fruit or sometimes pudding. Utenti also cleaned their trays in turn. After lunch, utente assisted staff in cleaning the kitchen, in shifts divided by day. They dried dishes, wiped down the table, swept, and the like.

During the shorter afternoon portion of the day, utenti divided into two rooms

(generally divided based on level of functioning/support needs) and worked on free time activities or talked with staff who filled out their diaries. One of the utente who had started taking guitar lessons on the weekends might show off what he learned to one or both of the rooms. Sometimes they worked on specific projects such as gifts to take home 139

for holidays or decorations for the center. Some utenti went outside the playground right across the parking lot and easily visible from the center's balcony or shopping trips to a grocery store across the street to get ingredients for the pastry baking activity or premio

(rewards) that the utente received for good behavior overall or after specific activities such as Tombola. Tombola were the last activities of the day. Utenti played in two groups, one seated around the table and one as a Tombola al piede (Tombola on foot) out in the hallway.

The other day, utente did not go swimming, so everyone ate the catered lunch, still in two groups. The main physical exercise of the day was instead a percorso motorio

(an obstacle course) either at a gym a short drive away or in the hallway. After lunch, a staff member might host a guided relaxation session for some of the utenti, focused on audio and tactile sensory experiences.

Day Center 2 also offered regular parent meetings including a general assembly meeting and parents' discussion group.

Day Center 3

History and Administration

Like the other two, Day Center 3 is a Centro Diurno Disabili. It is run by a cooperativa which also runs a day center that is not autism-specific, and several services for people with disabilities, the elderly, children, and infants in the region. The autism- specific CDD was founded in the mid-2000s due to the growing number of people with autism coming into the right age for the service. It therefore responded to a request from the comune for specific services for these young adults. During my visits, there were 9 youth. Staff generally referred to the people with autism as “ragazzi,” kids, which is how 140

I will refer to them in this section.

My Typical Week

Staff introduced me to the ragazzi as a stagista, an intern. I gradually took on more direct engagement over my three months at Day Center 3. At first I shadowed staff and ragazzi in their activities, chatting with both, and asking questions. Chatting with me was used as a reward for some of the ragazzi, but this was the extent of my initial integration. I then began to shadow specific staff members through specific activities with the ragazzi and engage in the staff role myself, with their supervision. The staff role consisted in these cases largely of supervising ragazzi in their activities such as cooking and setting the table, or leading games such as Memory, Tombola, Game of Goose, and

Sorry! By the end of my period of participant-observation, I was scheduled “in turn,” directly the point of reference for one or two ragazzi at a time, always with my own point of reference in the staff to help me.

I stayed at Day Center 3 all day twice a week. Every day, I arrived before most of the ragazzi and watched the staff create the day's agendas. Most of them arrived with their parents. Upon arrival, each ragazzo deposited his or her backpack in their designated cubby and changed from street shoes to ciabatte (slip-ons/house slippers). For external activities, they changed back into street shoes.

Each day had the same basic structure: Activities, Snack, Activities, Lunch,

Break, Activities, Snack, Wind-Down and Go Home. Many activities occurred each day, for different subsets of ragazzi in different orders. Some activities were physical, such as staffetta, an indoor obstacle course/relay race; and group stroll through a nearby park.

Others focused on various work activities. Ragazzi completed cognitive skills exercises 141

(classifying, matching pictures and words, stuffing envelopes, completing puzzles, etc.) in a variety of formats: lavoro al tavolo in which a ragazzo completes a series of tasks independently and in silence; lavoro in coppia in which two ragazzi complete the same tasks in pairs, one person passing the puzzle piece or word-image pair or whatnot to the other person for placement or classification; percorso in which the ragazzi in turn complete similar tasks but on foot, walking between the collection of pieces and the box or board on which they must be placed or sorted. A few ragazzi had computer workshops with the staff in which they completed specific tasks such as searching for a specific topic or typing letters to take home to their parents. Ragazzi also did domestic tasks in the center, including a morning cucina kitchen workshop making fruit salad, nutella on toast, or other desserts; setting the table; washing dishes; cleaning surfaces and floors; and hanging up wet bathing suits and towels to dry. One person wrote what they had eaten today and posted it on a bulletin board outside the door for the families to see as they arrived to pick up their children. There were also dedicated leisure activities like games such as Tombola, Memory, Sorry!, or Game of Goose; or individual free time activities such as puzzles, reading magazines, drawing, or writing.

There were also day specific external activities. One day began with a visit to a nearby gym for a subset of the ragazzi. Upon returning, it was time for the first snack of the day. The day also ended with a visit from a gym coach for a short physical education class. On the other day I visited, most of the ragazzi went to the community pool for swimming or water aerobics led by the staff. They changed and showered in sex- segregated locker rooms.

Ragazzi divided into two groups for lunch and snacks. There were some tasks that 142

were assigned to one ragazzo, sometimes varying who by day: setting the table, serving a second course, bringing out the oil and vinegar. Each person cleared his or her own place.

After lunch every day was a break in which one ragazzo chose a DVD for the three or four who were interested in films to watch. These DVDs were often Disney,

Pixar, or Dreamworks animated films, but also included the occasional live action or even music video. Everyone had a short break before continuing with more work-like activities such as cleaning up after lunch or setting the table for snack. This second snack occurred late enough in the day that generally the only remaining activity was to get ready to go home and wait for the parents to arrive. This period also served as a social and recreational time in which the ragazzi chatted, read magazines, or road an exercise bike.

Then parents arrived to take their children home. Parents chatted with staff, each other, and each other’s children at this time.

Residential Center 1

History and Administration

Although this center offers many day services to individuals who do not live in its residential structures, it is one of the few organizations to also offer residential services. I have therefore classified it as a residential center. Residential Center 1 was founded in the late 19th century under the auspices of the Catholic Church. It operated as a hospice, caring for people with disabilities and chronic illnesses and impairments from the surrounding countryside. In the 1970s, Residential Center 1 took up 'psychopedagogical' methods in working with lifelong disability, and created a hospital for regular out-patient visitors. In these years, the directors of the organization decided to focus their attention on people most severely affected by disabilities and the impairments of old age. Moving 143

beyond the primacy of religious figures in its early years, the role of lay staff greatly increased. Since the late 1990s, it has operated as an ONLUS (i.e., Non-Profit), accredited by the Regional governments of the area.

Residential Center 1 offers a wide array of services to various populations, including the elderly, people with psychiatric disabilities, and people with intellectual and developmental disabilities. In the geographical area in which I worked, it offered 3 types of services for people with autism: Centri Diurni Disabili (CDD), Comunità alloggio socio sanitaria (CSS), and Residenza Sanitario Assistenziale per Disabilie (RSD). Two of the CDD (divided based on strength of intellectual functioning) and two of the CSS

(which are in the same building but administratively two communities) are specifically dedicated to autism. Historically, the services at Residential Center 1 have been localized at its headquarters. In recent years, the organization has branched out to have satellite locations in nearby communities, as well as collaborations with other cities and even other countries wherein staff travel to provide training and supervision. Residential

Center 1 staff and documents generally referred to the people with autism who received their services as ospiti, as will I in the following discussion.

My Typical Week

Residential Center 1 was admittedly the location in which it was most difficult for me to mingle with people with autism, although I knew a few casually. My activities, primarily shadowing highest level staff, took me into therapeutic spaces as well as équipe meetings and supervisioni (described below). I also attended public lectures. In équipe, supervisioni, and public lectures, video recordings were an important tool. I was able to view, alongside professionals, parents, and community members, videos of specific 144

training sessions, problem behavior, outings, and typical days. The more therapeutic spaces I toured included day centers, vocational workshops, and private meetings. I also accompanied high level staff to residential spaces, both autism-specific and mixed disability; both the small CSS and the large RSD. I was called a tinoncinante (intern) or la dottoressa Americana (the American doctor), and generally treated as an emerging expert in the field and an apprentice of sorts.

I entered into the field gradually. I started with individual meetings with the higher up staff and attending lectures to the public. I was then able to attend staff meetings: équipe, in which staff talk together to raise problems and create solutions; and supervisioni in which staff bring videos of their work for critique by the supervisors and their peers. I also attended a presentation to the association of parents of adults with autism in residential services, where they viewed videos of their adult children's activities. Later, I was invited into more individually focused meetings as well: Parent

Training in which staff guided individual parents on specific issues to work on with their children; inserimento (admission) of a new ospite into one of the day services; requests for new admissions, particularly for people with autism approaching their maggiorenne

(18th birthday); and a trip to a work placement site for an adult with Asperger's. Many days, I shadowed a staff member as he or she moved through such activities. I also received tours of various CDDs, CSSs, and an RSD. I attended three dinners at non- autism specific CSSs. In the end, I was only able to spend some short time at the autism- specific residences themselves. The house was generally limited to residents and staff to minimize the type of unpredictability visitors bring, which is particularly bothersome for people with autism who rely on the predictability of the residential setting. Nonetheless, I 145

was able to attend a Sunday lunch accompanied by one of the highest level staff members, and also a Sunday morning mass with the regular daily staff.

The residences together provides a home for 12 residents in double rooms with a shared living/dining room, kitchen, recreation room, and outdoor spaces. Throughout all of its services, Residential Center 1 serves hundreds of individuals with developmental disabilities. There were staff day and night, although during the day the residents left to attend day centers, go to jobs in protected workshops, or other vocational and

(reh)abilitational activities. Often these centers, workshops, and activities are those also run by Residential Center 1, but not always. In the evening they return to have dinner together (sometimes cooking together), engage in leisure pursuits, and get ready for bed.

For the highest level staff, this rhythm of work-home represents the 'normal' life, and is the ultimate goal for which they are striving.

Residential Center 2

History and Administration

Residential Center 2 is a “farm community,” an agricultural context designed to be more stable, simple, and predictable for its residents than the bustling city life.

Residential Center 2 was founded in in the early 2000s and accredited shortly thereafter.

It was born from the efforts of a parents' organization concerned with the question, ever- present for my participants, of “dopo di noi” (after us). It is run by psychiatrists and educatori, with a staff including ASA, OSS, nurses, and doctors. A doctor is always on call 24/7 to attend to emergency medical needs of the residents. Residential Center 2 provides services to 24 adults with autism and related conditions who live at the site in small residential buildings and engage in work, recreational, and educational activities 146

during the day in their own buildings, shared common spaces, and locations in the nearby neighborhoods such as the swimming pool. Residential Center 2 only provides services to its own residents; there are no day services for those who do not also access residential services. Residential Center 2 documents refer to the people with autism who live there as residents and ragazzi. I will use the term residents in this discussion.

My Typical Week

I attended Residential Center 2 as a researcher/intern. I spent most of my time in the company and role of the tironcinanti, interns from a local university program. I was inserted into the Activities like the interns, and like the interns I was not scheduled for non-Activity events such as wake-up, breakfast, lunch, and snacks. These events of daily living took place in the private and homey residences; I knew the residents primarily through the shared common spaces in which the Activities took place. I stayed the night at Residential Center 2, in one of the guest rooms set aside for interns, volunteers, and staff who needed to stay overnight between shifts. Some evenings I went into nearby towns with the other interns.

I attended Residential Center 2 for two straight days, staying overnight in between. Every day followed the same clear structure. For me, this structure was generally Activity A, break, Activity B, break, Lunch, Passaggio di Consegna, Break,

Activity C. My break periods were paralleled by similar relaxing moments for the residents in their own homes, generally Snack. I participated in almost all of the scheduled activities. As a farm community, caring for their alpacas was a central task.

Other outdoor activities including Trekking and Percorso Vita (fitness trail), in which the residents walked the grounds around their home. There were several creative activities. 147

Closely linked to the care of the alpacas were the weaving and sewing activities. Several residents had learned or were learning from a dedicated instructor how to use looms of varying complexity. They wove fabrics that could become bags, rugs, scarves, or other products. In the sewing activity, residents worked closely with a staff member who operated the sewing machine to create these products. The residents also worked in a ceramics laboratory, in which the dedicated instructor there instructed them in various stages of the ceramic arts, from creating beads and pouring molds to using the furnace. In another activity, Bricolage, residents worked with staff direction to create items from the finished ceramics, such as scacciapensieri (wind chimes).13 Products from the ceramics lab were also sometimes used in the woven products such as buttons for bags and purses.

Another creative activity was the weekly music laboratory, led by a group of psychiatrists from a nearby university. There was also a cognitive skills activity in which residents spent time together working on mostly individual tasks such as reading, writing, math problems, or facilitated communication with staff on the computer. Residents also had dedicated activity periods for chores in their own houses, such as sweeping, taking out the trash, bringing in water and juices from the storage room, or completing special tasks for the home. Finally, there was the relaxing indoor activity of cineforum, in which residents picked a film to watch from their library of superhero films, animated films

(such as Disney, Pixar, the Simpsons, and those by Italian companies), Westerns, and

Italian classics. There were also a few activities in which I did not directly participate including farming, harvesting, and swimming.

Social/Recreational Group 1

13 This word also refers to a small mouth harp, but in this context it was used to refer to wind chimes. 148

History and Administration

Social/Recreational Group 1 serves people with autism and rare diseases, offering both sports (primarily swimming and running) and indoor games (Ludoteca). Several groups work closely together in the administration of these services. The story begins with a parents' association, founded in the mid-2000s, for parents of “differently abled” children of varying ages. The parents devised projects for their children, sought help from local municipalities, and created a cooperativa to realize these projects with the appropriate personnel. The Ludoteca began in the mid-2000s and has expanded over time. In 2013, it was divided into two groups: i piccoli/bambini e adolescenti (the younger, 13 years old and under) and i grandi/giovani adulti (the older, 14 years old and higher). The sports project began in the late 2000s, with participants ranging in age from about 12-19. Since the early 2010s, both have been managed by the cooperativa with the same set of staff and participants. I therefore write about them as one group, although there are certainly a few participants and staff members who frequent only sports and not games, or vice versa. There are also those who attend only sports practices in the gym and not the pool, and vice versa. Social/Recreational Group 1 refer to the participants with disabilities using various terms: utenti (users/clients), ragazzi (kids), giovani

(youth), atleti (athletes). In this discussion, I have chosen to use atleti when referring to participants in the sports (swimming and running), and giovani when referring to the participants in the Ludoteca.

Although the cooperativa ran both activities, they coordinated them separately in separate équipe meetings. The Ludoteca staff met three times a year, those who worked with i piccoli and i grandi together. They also held 3-day training sessions for new 149

volunteers. Generally, both volunteers and giovani first got to know the cooperativa through the Ludoteca before joining the sports practices, although there were exceptions.

The sports staff met monthly, alternating between équipe and supervisioni. In the unique set of months in which I was visiting, every month had an équipe. équipe meetings were divided into two parts: communications and cases. In the first part, the coordinator discussed general progress, upcoming events, and new athletes who would be joining the group. In the second part, staff discussed any specific cases that needed attention, i.e., problems with any of the individual athletes. They worked together, led by the coordinator, to devise an educational strategy to address problems and to put all staff on the same page in doing so. All of the educatori and the coaches attended. équipe meetings were a place to discuss the administrative and educational aspects of their work.

Supervisioni, in contrast, served as an opportunity for the staff to reflect on their work, their rapport with the athletes and their colleagues, and any problems they may be facing.

These meetings focused on the staff as individuals and their personal relationships to their work.

My Typical Week

I was welcomed into Social/Recreational Group 1 as a “free agent” - not a volunteer, educatrice or psicologa, but also not an athlete. At times staff referred to me also as an anthropologist, which is how I referred to myself when I introduced myself.

Social/Recreational Group 1 marketed itself for people with autism specifically but not exclusively. There were 24 participants during my visits, a third of whom had diagnoses on the autism spectrum. In my observations, I focus on the staff, the volunteers, and the athletes and youth that the staff identified as having autism spectrum 150

conditions. I do not write about the other athletes and youth who had a range of different disabilities, except as it relates to the staff's work.

I spent the least amount of time per week at Social/Recreational Group 1, simply because Social/Recreational Group 1 met less frequently than the full-time Day Centers,

Residential Centers, or even the other Social/Recreational group. I attended swimming practice, gym practice, and Ludoteca once weekly. I also attended monthly équipe meetings (4 in total) and three weekend gare (races, running or walking).

Swimming practice met for two hours in the late afternoon at a public pool. We met in the lobby where parents come to drop off their children in a passaggio educativo

(educational passage) from parent to the designated responsible educatore. Then we went in sex-segregated groups to the locker rooms to change, and into the pool where the boys and girls joined back together and we had our opening circle. The coach asked the athletes to identify who was absent, who was returning, and (when relevant) who was new. Then we ran under a quick shower and into the pools. We generally started together in the medium-sized pool for “games,” then divided into different groups for the exercises. At the end, we all went to the smallest pool to form the closing circle. The coach acknowledged good works and spoke words of encouragement. We then said goodbye, and split into boys' and girls' locker rooms again. Back in the lobby, parents retrieved their children and the staff delivered summaries of their children's performances that day, as well as any relevant health information.

Gym practice worked in much the same way, meeting for two hours in the early evening. Parents dropped their children off outside the gym, and athletes and educatori walked to the locker rooms in small groups. We then entered the gym and had a period of 151

free play while waiting for everyone to finish changing. Once all of the athletes were present, the coach whistled to start the initial circle. She asked each athlete in turn “con chi alleni?” (with whom are you practicing?) and focused on getting verbal responses from those who spoke (almost everyone). The ratio was generally two athletes to one educatori, but with several volunteers present each athlete usually had one dedicated guida (guide), either educatore or volunteer. As a “free agent,” I switched between different small groups or assisted the coach. After the circle, we split into a series of exercises. Sometimes athlete and guide ran together, other times they ran in turn or one to the other, and sometimes the whole group of guides ran together and then the whole group of athletes, somewhat competitively. Always it was clear who was with whom. The day ended with stretching and a closing circle, then back to the locker rooms to shower and change, sometimes alongside athletes from local sports teams. Parents met their children and heard summaries of their performance from the staff in the gym hallway as the other sports teams started their practices.

One purpose of the sports practices was to prepare the athletes for gare, races in the greater community where the athletes could participate as a team amidst other teams and individuals. I attended three such events – a walk, a 3k run, and a 3k/8k/23k run in which I ran with a group that completed 8k.

The Ludoteca met every Saturday afternoon for three hours and included an opening circle, the days' structured activity, a snack, a period of free play, the awarding of stars, and a closing circle. Parents picked up and dropped off their children in the lobby or on the patio right outside. Sometimes the Ludoteca was divided into maschi who worked on constructing a Gioco Dell'Oca (Game of Goose) board game and femmine 152

who worked on other activities. As all of my sample were male, I went with the maschi.

When we played the Game of Goose, we played all together. Many times the Ludoteca group made outings into the surrounding neighborhoods including a bowling alley, an educational farm trip, and an evening pizza outing.

Social/Recreational Group 2

History and Administration

Social/Recreational Group 2 was founded in the late 2000s, an initiative of a non- profit association of parents and self-advocates affected by Asperger's, which itself was founded only in the early 2000s. Although I participated in occasional events hosted by the association (such as a lecture they co-sponsored at the local university and the general body meeting), I participated almost exclusively in the activities of Social/Recreational

Group 2 itself. Because Social/Recreational Group 2 had hundreds of soci (members), the number of participants varied widely day to day and event to event. The same building housed also another initiative of this group: a cooperativa sociale (social cooperative) which translates and publishes English-language books on Asperger's Syndrome into

Italian, as well as designing websites and graphics. Staff and volunteers referred to the teenagers and young adults who attended the Social/Recreational Group as “i ragazzi”

(the kids), as will I in this section.

My Typical Week

At Social/Recreational Group 2, I was explicitly established as an anthropologist.

I spent by far more time at Social/Recreational Group 2 than any other site, because even after the period in which I considered myself officially researching - dedicating as much time as possible to being present during Social/Recreational Group 2 activities, as well as 153

arranging and conducting interviews - I stayed on for the singular yet still time- consuming task of finishing a tabletop RPG game I had started with a certain group.

Participating in this game was done mostly for fun, and I did not take intensive fieldnotes as I did for the first five months. I wrote down only information of particular interest such as when the participants reflected on Social/Recreational Group 2, their relationships with each other and others at the Site, or the autism spectrum directly or implicitly; I did not detail our RPG campaign, as I imagine this would not interest the reader.

My typical weekend at Social/Recreational Group 2 consisted of 7 to 8 hours a day both Saturday and Sunday. I began participant observation on a Sunday, and it is therefore on a Sunday that I shall begin my descriptions.

There is only one activity on a typical Sunday: Ludoteca. The Ludoteca was run by one organizer, with the help of several psychology students who volunteered, usually two per Sunday. A typical day at the Ludoteca started shortly after 15:00. I typically arrived at 15:00, give or take 15 minutes. After most people had arrived, generally around

15:30 or 16:00, the organizer and volunteers would set up games. The organizer ran a tabletop RPG in which at least 4-6 ragazzi participated. The volunteers and I ran smaller board games of 4-8 people: Cluedo (Clue), Labirinto (Labyrinth), King of Tokyo, Jenga, and the like - a combination of US and European games. We played until about 17:30.

Not everyone played the board games. Some remained the Conversation Corner reading comics or magazines in silence. Others played the video game console or watched videos on the other computer.

Around 17:30, Social/Recreational Center 1 hosted a snack break after which players started to leave. Some left alone, others with parents. A few left quietly, but most 154

said cheerful goodbyes to the staff and volunteers, each other, or the room as a whole. I often chatted with the parents who arrived at this time. Those who stayed often played a few more board games, until 18:30 or 19:00 when the volunteers started to leave and those who remained started to make plans for dinner. Starting shortly after or shortly before dinner, we began playing tabletop RPGs, often until 23:30.

On Saturdays, I participated to varying degrees in the Theatre Course, Movie

Nights, and the Self-Advocacy Group meetings.

The theatre course was run by a parent organizer and two volunteer assistants: an educatore with acting experience, and an educatrice trained in therapeutic theatre. Two parents served in more administrative roles. They did not participate in the lessons directly, but remained in Social/Recreational Group 2 and helped coordinate the mid- lesson snack break.

The participants arrived by 15:15 every Saturday for practices. The activity began promptly at 15:30. They started with riscaldamento (warm-ups). The days that I attended, participants started with mediation and stretching, and then we moved into a guided warmups followed by theatre games. At 16:15, there was a brief break for cookies and soda, then back to the "stage" at 16:30. The second part of the practice involved four- person guided improv scenes followed by commentary from the audience of other participants and the organizers and volunteers. I participated in the improvisation exercises as well. Theatre practice ended at 17:30 with a closing circle, in which the organizer asked for participant feedback. The final performance was a series of comedic scenes with eleven actors and a full house in the audience.

Movie Nights were a regular occurrence when I began observation, dwindling by 155

the end of my time in Italy, and restarted after my departure from what I have heard. The films I joined them in watching included Willy Wonka and the Chocolate Factory, Adam,

Blade Runner, Amelie, Kung Fu Cult Master, and Animal Farm (at one point a contender for the theatre group's final performance), and I heard they had also watched Forrest

Gump on a day I was absent. One staff member explained that they are not always films about Asperger's, but always about relazioni sociali (social relationships). Staff wanted to have a film viewing followed by a discussion, which they accomplished most successfully following the film Adam, whose protagonist explicitly has Asperger's.

The Self-Advocacy Group was run using a round-table discussion modeled off of the “World Cafe” strategy, and facilitated by a volunteer psychologist. Each table received a question to discuss, and marks to write brainstorming notes on the paper tablecloth. After a set period of time, each table was to select and “ambassador” who would stay and explain the notes, whereas everyone else moved to different tables. Then they would get a second topic to discuss, and move forward the brainstorming. On the first day, the topics were “what would you like (this group) to accomplish? And: what will you personally contribute to today’s discussion?” Later meetings delved into more specifics of fundraising, entertainment, self-advocacy, and self-help. I did not participate heavily in this activity because it was aimed at adults older than my target age group, and because many of the participants traveled to arrive and did not know me nor my purpose, sometimes confusing me for a participant on the spectrum despite my self-introduction and explanation of my role. Despite its target age group, a few of the young adults I knew from Ludoteca, Movie Nights, Theatre, and miscellaneous outings participated as well.

The information I discuss in this dissertation comes from their perspectives and 156

discussions.

Social/Recreational Group 2 also hosted a few outings in which I participated, including a bowling trip, a visit to the theatre, and a fundraising concert. There were also activities in which I never took part including a group Cooking Course, coordinated by a professional teacher in the area; more individualized instructional activities such computer classes and mini-fieldtrips to teach the skills involved in getting around town and interacting with local businesses; and outings organized by the boys themselves to local festivals or attractions.

Results Overview

Drawing from interviews and fieldnotes, the remainder of the dissertation will unpack how autism is defined, managed, and experienced in Italy. Chapter 4 reports on professionals’ experiences, and answers research question (1): How is autism conceptualized in Italy? Chapters 5 and 6 report on the experiences of parents and youth with autism respectively, answering this question as well as research question (2): How do people defined as autistici and their families define, manage, and experience that label? Building on these descriptive chapters, Chapter 7 will turn towards the theoretical, addressing research question (3): How does new biopolitical theory apply, or not, to social organization around autism in Italy?

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Chapter 4: Professional Conceptualization of Autism

Chapter Overview

This chapter presents the results of data collection with professionals through interviews, observations, and informal conversations. It provides the first major step in answering Research Question 1, “How is autism conceptualized in Italy?” It also sets the scene for the conceptualizations of parents and people with autism who interface with professional services by detailing those services from the provider perspective. The chapter is divided into two sections, “What is autism?” and “How should autism be managed?”

Section 1, “What is Autism,” addresses the definition and etiology of autism.

Professionals define autism primarily in terms of the triad of impairments listed in the

DSM-IV (sometimes called the Wing-Gould Triad): social interaction, social communication, and restrictive and repetitive interests. Additional characteristics most commonly mentioned by professionals include behavior problems, sensory and perception difficulties, rigidity, and particular strengths. Special consideration is given in this section to the definition of Asperger's Syndrome, particularly in light of changes between the DSM-IV-TR and the DSM-5, which was published during the fieldwork period. The majority of respondents defined Asperger's as autism without intellectual disability, lending credence to the idea that Asperger's may become what Ian Hacking

(2010) calls a “transient” and Nadesan (2005) a “niche” disorder. Respondents were less homogenous in their thoughts on the causes of autism, except for a consistently firm rejection of the “refrigerator mothers” theory that poor parenting causes autism. Many suspected that autism was caused by a combination of genetic predisposition and 158

environmental triggers

Section 2, “How Should Autism Be Managed,” delves into professionals' work. It outlines eight different philosophies of intervention, and explicates their interrelatedness.

Although I do not explicitly compare Italian approaches to those in other countries, I do discuss Italian perspectives on approaches that were initially developed in the United

States. What all the models discussed share is that they all employ what I read as a social model of disability, focusing on changing the environment to facilitate the learning ability, autonomy, and well-being of people on the spectrum, rather than attempting to make the people with autism change into neurotypical people. This approach clearly connects to the definition of autism used by professionals by adapting the environment to the characteristics of people with autism, following a somewhat neurodiverse model.

Professionals also connected treatment and management discussions to the characteristics of people with autism when they criticize certain interventions for being too “rigid,” particularly inappropriate for people with autism who professionals described as already so rigid themselves. Section 2 ends with a consideration of treatment in the context of the life cycle and the problem that professionals called “dopo di noi,” meaning the futures of people with autism as their parents age.

Section 1: What is Autism?

It is difficult to begin talking about autism due to important semantic concerns. As discussed above, Italy draws from the DSM and ICD in defining autism for administrative purposes. In these documents, autism forms part of disturbi pervasivi dello sviluppo

(pervasive developmental disorders) or disturbi generalizzati dello sviluppo (generalized developmental disorders). When I asked one psychologist, he told me the terms are 159

interchangeable. However, a teacher told me that they have different connotations for a lay listener:

Pervasive is something that changes your life. It’s a kid that is incapable of having social relationships, it’s not generalized, like saying “oh well, he’s a little bit of a goofball because every so often he does this kind of thing but… he makes friends and goes places,” for example. No, if it's pervasive, it comes to affect you, to damage you in something. Therefore, pervasive is more serious. – Interview, Teacher

When discussing the term, as 17 professionals did, many simply described autism as falling under the umbrella of disturbi pervasive/generalizzati dello sviluppo. However, three professionals explained to me that they found these non-autism terms somewhat of a linguistic trickery, a sentiment expressed also in the parent sample (Chapter 5):

We talk often of pervasive developmental disorder but that is still very broad, no? […] What I’ve noted a lot is that in medicine they don’t easily give immediately a precise diagnosis, they prefer to wait [….] seeing that we have so many children that maybe we give a diagnosis of atypical autism or pervasive developmental disorder not otherwise specified, therefore for the, let’s say, ‘borderline forms’ of autism, that it often gives the parents the false idea that they are children that can be cured rather than that aren’t so serious. – Interview, Consultant

They are similar, generalized developmental disorder and autism, but for a parent to say “autism” is truly a label for which maybe there isn’t even awareness therefore they think that their child is isolated, incapable, like he’s not... like he’s not capable of feeling emotions. Generalized developmental disorder still talks about development, therefore gives the idea of change, of growth, and, and therefore they see it somewhat less like a condemnation. - Interview, Educatrice

The above quotes demonstrate that while the term disturbi pervasivi/generalizzati dello sviluppo referred, for many, to a technical term for the category of diagnoses into which autism falls, for others it indexed a lack of severity. Though the teacher quoted above sees pervasive as more severe than generalized, professionals saw both terms as indexing something less serious than autism. As we will see in Chapter 5, parents did not 160

always find this semantic choice helpful in the long run. Focusing now on professionals, however, those that referenced disturbi pervasive/generalizzati dello sviluppo described it as either synonymous with a diagnosis of autism, or a broader diagnosis that might later be refined into the more precise diagnosis of autism.

As a nosographic entity, autism falls under the DSM-IV category of pervasive developmental disorders and the ICD-10 category F84. Professionals specifically invoked these classifications. Just as the DSM and ICD have globalized the definition of autism, diagnostic instruments have been translated and disseminated worldwide. In Italy, participants who had knowledge about the diagnostic process (through direct or indirect experience) consistently invoked the Autism Diagnostic Observation Schedule (ADOS)

(Lord et al. 2000) and Autism Diagnostic Interview-Revised (ADI-R) (Lord, Rutter, and

Le Couteur 1994), and less frequently Checklist for Autism in Toddlers (CHAT) (Baron-

Cohen et al. 2000), Childhood Autism Rating Scale (CARS) (Schopler, Reichler, and

Renner 1986), or the Autism Quotient (Baron-Cohen et al. 2001). Diagnosis and treatment planning also involves evaluations of IQ via tests such as the Wechsler Adult

Intelligence Scale (WAIS) (Wechsler 2008), Raven (Raven 2003), or Leiter (Leiter and

Porteus 1936) and evaluations of adaptive functioning, frequently via the TEACCH

Transition Assessment Profile (TTAP) (Mesibov 2007) or Psychoeducational Profile

(PEP) (Schopler and Reichler 1976), occasionally the Vineland (Sparrow, Balla, and

Cicchetti 1984) or tests of Italian or French origin. It should be noted that these diagnoses, often made before age 3, almost must be made before age 18 due to the transition from neuropsychiatry to psychiatry discussed in Chapter 2. An Italian epidemiological study (described in Moderato 2008:46) noted that after as young as age 161

14, the prevalence of autism seems to drop suddenly due to minors with autism being re- labeled with other diagnoses in adulthood. In my research, professionals from within and outside the field of psychiatry were critical of mainstream psychiatry’s lack of knowledge about autism, especially Asperger’s Syndrome, and both advocates and psychiatrists themselves worked to increase awareness.

In defining autism, the majority of professionals included some discussion of the

“Wing-Gould” triad of impairments that characterizes autism in the DSM-IV and elsewhere: qualitative impairment in social interaction, qualitative impairment in communication, and restricted repetitive and stereotyped patterns of behavior, interests and activities.14 More specific characteristics that fall under these domains in the DSM-IV include lack of eye contact,15 using people as objects,16 a total absence of language,17 specific stereotyped mannerisms such as sfarfallamento (hand-flapping) and dondolarsi

(rocking),18 and insistence on ritual and routine or difficulty with change.19

14 14/45 professionals referred directly to some version of “the triad” of Lorna Wing or the DSM-IV, or “the three areas.” However, an additional 22/45 described all three characteristics, just not explicitly bounded together as a “triad.” Together, therefore 80% of participants stressed the importance of all three characteristics. 15 Referenced in 4 interviews. 16 Referenced in 1 interview. 17 Referenced in 6 interviews. 18 Referenced in 4 interviews. 19 Referenced in 9 interviews. 162

Table 5: Commonly Referenced Characteristics of Autism (Professionals) Characteristic # of Interviews Behavior Problems 13 Sensory and Perception Difficulties 13 Rigid 9 Particular Skills, Talents, Intelligences 8 Difficulty with Organization and Multitasking 6 Good Memory 5 Lack of Empathy 5 Mindblindness 5 Visual Thought and Spatial Skills 5 Hate Being Touched 3 Motor Difficulties (Fine and General) 3 Attention Problems 2 Lack of Central Coherence 2 Concrete Thought 2 Honest 2* * Asperger’s Syndrome Only

The diagnoses of autism that was codified and globalized in nosographies and instruments such as the DSM, ICD, and ADOS were originally described in Austria, the

United States, and the United Kingdom through the works of those such as Leo Kanner

(1943), Hans Asperger (1944), and Lorna Wing (1981). In fact, the early influence of

Austrian-born professionals such as Kanner, Asperger, and Bettelheim leads an Italian anthropologist to refer to autism, and Asperger’s in particular, as “il male austriaco (the

Austrian disease)” (Cola 2012). Nosologies and diagnostic tools were designed to increase diagnostic validity and reliability between sites (Spitzer 1997) intra-nationally and internationally. However, such efforts do not negate the need for attention to local clinical expertise, as shown in cross-cultural studies of diagnosis for entities such as schizophrenia (Kendell et al. 1971) and lymphoma (Keating and Cambrosio 2000) in the presence of such reliable tools, as well as sections in the DSM-III and following editions dedicated to understanding local expressions of symptoms and syndromes. Although this 163

study does not address clinician judgment experimentally, it does start from the supposition that local professional expertise cannot be taken for granted in the face of standardized definitions. Table 5 therefore shows which additional characteristics were salient to professionals participating in this study (excluding those that were mentioned by only one person). Two of the top three associated characteristics – sensory/perception difficulties and rigidity – are now discussed explicitly in the DSM-5 criteria (Association

2013:50). The characteristic of honesty was salient only for professionals who were describing Asperger’s Syndrome in particular. Participants stressed that people with autism are very different one from the other, and that these characteristics may also vary qualitatively or in strength of their presence. A few participants discussed gender differences. Autism is diagnosed far more frequently in men than women. Participated noted that women with autism diagnoses tended to have greater levels of support needs

(i.e., tended to be ‘lower functioning’) and also were less likely to have clear special interests compared to their male peers, a finding that has been reflected in epidemiological studies in the United States (Frazier et al. 2014).

The characteristics of autism were not entirely uncontested. Professionals occasionally challenged them as misunderstandings. Media stereotypes often focused on the specific aspect of impairment of social interaction that describes people with autism as isolated and closed. This description was also given in a fifth (9/45) of interviews.

Others, however, contested this association, explaining that isolation is a consequence of a lack of strategies for interacting or for overcoming sensory difficulties, not an inherent quality of a person with autism. Another professional similarly challenged the association of autism with a lack of empathy: 164

Some of the scholars who work on Asperger’s say also that the people with Asperger’s do not have empathy, but this is something that many people with Asperger’s reject, saying simply that their way of empathizing is different than that which [the instruments] used to analyze them wants to see. Therefore with those who study Asperger’s maybe they aren’t capable of understanding their way of empathizing. - Interview, Teacher

One interesting thing you see is that even with a person with autism [it is possible to create a relationships, regardless of the fact] that before working together you know that they are people who have trouble entering into relationships. In reality they use preferential channels, anyway they use different channels [than] those that most people use, [but despite this you can] have relationships, even very important ones. It’s not that they can’t enter into relationships, it’s that they use different channels. - Interview, Educatore

When these professionals challenged certain characteristics, they specifically raised the idea that people with autism do not lack certain traits (empathy, social interaction) but rather that they present them in different ways.

This perspective that people with autism simply do things differently can be seen in holistic descriptions of autism as well. Professionals had several ways of talking about people with autism as fundamentally different from, but not necessarily lesser than, people without autism. Half of professionals (N=22) made comments to this effect, defining autism as a “modo” (a way) of being or understanding the world, a “stato”

(state) of being or functioning, “una modalità” (a way) of being human or processing information, “un’aspetto della condizione umana” (an aspect of the human condition),

“una percezione diversa del mondo intorno alla persona” (a different perception of the world around the person), and even “un’altra cultura” (another culture). Autism can therefore be understood as a mismatch between the way the person with autism exists, and the surrounding world. In the excerpts below, professionals explain how this might happen: 165

Anthropologist: Are there other characteristics that are important? Respondent: Uhm… eh, I’d say this. Maybe not for everyone… the existence of a parallel world, that is, as though they are inserted into a reality different that the one that we perceive. - Interview, Psychologist

Autism is an impairment in relationships, in communication, and in the area of imagination. And this is the technical definition. If then we want to see what autism is, a person with autism is a person that lives with parameters different than ours. - Interview, Coordinator

Defining autism as its own way of being can offer positive valuation, moving away from deficit-focused language.

The view that people with autism have their own culture or a distinct, yet valid, way of being in the world, is reflected also in metaphor. A few professionals alluded to metaphorical descriptions of people with autism that take these notions into the land of science fiction and fantasy. They described people with autism as bambini or figli delle fate (fairy children, changelings who were swapped for human children at birth, resulting in children who are both physically beautifully and socially strange),20 aliens or specifically Martians,21 or even fallen angels. Occasionally, professionals would also draw on the metaphor of person-with-autism-as-foreigner, referencing my status as a speaker of Italian-as-a-second-language and the difficulties I might face as a way of understanding the difficulties a person with autism might face.

As I show in the next section, this perspective of autism-as-difference has

20 For a discussion of changeling myths and autism, see Valtellina (2015). 21 References to Martians assumedly allude to Temple Grandin’s famous comment to Oliver Sacks, “much of the time I feel like an anthropologist on Mars” (Sacks 1995:259). In that statement, however, it is Grandin who positions everyone else as Martians, not herself as an alien visitor. An anthropologist on Mars, not an anthropologist from Mars. Metaphors of person with autism as alien are, however, common. For an Italian example, see Macrì’s (2010) autobiography, Mio Figlio, un Alieno dal Pianeta Autismo (My Son, an Alien from Planet Autism), reviewed academically by Ravanelli (2013) 166

implications for treatment. Professionals strive to create environments that respect and work with the characteristics they attribute to people with autism, in what I describe as a version of a social model of neurodisability that focuses on changing the environment as the first step in facilitating change for people with autism. The remainder of this section addresses further points in the definition of autism: the relationship between autism,

Asperger’s syndrome, and intellectual disability; and the causes of autism.

Autism, Asperger’s Syndrome, and Intellectual Disability

Although it is not currently a distinct diagnosis in the DSM-5, the DSM-IV and

ICD-10 recognize a particular sub-category of autism spectrum disorder, Asperger’s

Syndrome. The ICD-9, still commonly used in some Italian health boards, did not initially include the term Asperger’s. At least in written nosologies, Asperger’s syndrome might therefore be “transient” (Hacking 2010) or “niche” (Nadesan 2005:29) in the sense that philosopher Ian Hacking describes Multiple Personality Disorder and others – a diagnoses that peaks in prevalence and professional popularity at a particular time, then all but disappears.22 Preliminary reports indicate that people who would previously have been diagnosed with Asperger’s syndrome might fall under the new category of “autism spectrum disorder” or the new and different “social communication disorder” (Frazier et al. 2012). Just as Hacking argues that Multiple Personality Disorder is “transient” despite the new name and category of Dissociative Identity Disorder, so Asperger’s can tentatively be read as “transient” in this sense despite these new names and categories.

Over time, further epidemiological research will illuminate trends in changing diagnoses.

22 I presented a preliminary version of this subsection and this argument at the Society for Medical Anthropology meeting in 2013 (Cascio 2013). 167

For now, this chapter looks at Italian professionals’ responses to the question asking for the difference between autism and Asperger’s and applies these findings to the ongoing discussion of Asperger’s potential fates.

Asperger’s Syndrome only entered into the Italian discourse over the past decade.

Professionals frequently described it as less recognizable, often diagnosed late or misdiagnosed earlier. Professionals and advocates lamented the lack of awareness about

Asperger’s among doctors. They identified this problem among a variety of specialists, but especially among adult psychiatrists. Psychiatrists who did work with Asperger’s syndrome lamented the lack of awareness among their colleagues. Many people in a variety of professions worked to increase professional and general awareness of the syndrome.

Professionals had several ways of describing Asperger’s syndrome and its relationship to autism. Of the 35 professionals who discussed the relationship between

Asperger’s and autism, four defined Asperger’s as some version of a ‘less severe’ global deficit, placing Asperger’s on the high functioning end of the spectrum of autistic characteristics. Twenty professionals explained high functioning in a different way, as a higher IQ but not necessarily a weaker prevalence of symptoms. This more common perspective is highlighted in the following quotation:

The person with autism has an intellectual disability. While the person with Asperger’s does not have an intellectual disability but an IQ in the norm. Anyway, the person with Asperger’s has serious difficulties always in the triad [of characteristics], therefore in communication, in relationships, and in interests that clearly, having an IQ in norm, it’s much more evident, in a person with Asperger’s, [how] to verify the restricted and stereotypical interests, something that for a person with autism with a severe intellectual disability, it’s more difficult perhaps to observe. - Interview, Educatrice

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In perspectives like this, Asperger’s is defined as autism without comorbid intellectual disability, or autism with a higher IQ. Indeed, the discussion of Asperger’s syndrome links tightly with discussions of ritardo mentale or disabilità intellettiva both of which I will translate here as intellectual disability following English language conventions on non-discriminatory language.23 While many reports suggested that around 75% of people with autism have co-occurring intellectual disability (Schreibman 2005:96), some researchers have questioned whether the instruments used to obtain these numbers are appropriate for people on the autism spectrum (Barbeau et al. 2012; Dawson et al. 2007;

Soulières et al. 2011; Biklen and Attfield 2005). As of 2014, the Centers for Disease

Control and Prevention (CDC) reports a much lower rate of co-occurring intellectual disability in the United States: 54% of eight-year-old children with autism also have intellectual disability (Centers for Disease Control and Prevention [CDC] 2014).

However, differing diagnostic practices cross-culturally may also affect these numbers; as seen above, many professionals suspect that autism without intellectual disability is less recognized by diagnosing practitioners.

The distinction between autism and Asperger’s based on the absence of intellectual disability in the latter demonstrates that intellectual disability is often considered part and parcel of an autism diagnosis unless that diagnosis is Asperger’s.

Many professionals addressed this specifically when defining autism. As one neuropsychiatrist explains, “[L’autismo] ha delle ricadute sullo sviluppo nella sua globalità, quindi, lo sviluppo motorio, lo sviluppo del linguaggio, lo sviluppo dell’affettività, lo sviluppo cognitivo, lo sviluppo del gioco, è proprio… pervasivo”

23 See http://www.medscape.com/viewarticle/782769 169

([Autism] has repercussions for global development, therefore, motor development, language development, affective development, cognitive development, the development of play, it’s truly… pervasive.)

However, there were also dissenting voices in interviews, who saw autism and intellectual disability as completely separate entities. In the words of one coordinator,

“L'autismo può essere associato sia ad una disabilità intellettiva importante, sia all'assenza totale di disabilità intellettiva. Per cui ci possono essere soggetti autistici molto autistici e molto intelligenti, e soggetti autistici poco autistici ma con grave ritardo intellettivo” (Autism can be associated both with significant intellectual disability and also with the total absence of intellectual disability. Because of this, there can be people with autism who are very autistic and very intelligent, and people with autism who are not very autistic but have a severe intellectual disability).

Several professionals discussed instead or additionally linguistic skills as differentiating autism and Asperger’s. Three professionals explained that people with

Asperger’s had better language skills than people with autism. Six professionals explained that people with autism had experienced language delays as children, whereas people with Asperger’s had acquired language at the developmentally appropriate age or sooner. Four professionals discussed this difference specifically as a way to distinguish between Asperger’s Syndrome and “High Functioning Autism.”

It comes more easily to me [the difference] between high functioning [autism] and Asperger’s. [....] The real difference between the two diseases, that is, the two terms more than the two diseases, is that in those with Asperger’s language starts immediately, normal with the age […] whereas for those with high functioning [autism, their language] can appear also a little late, maybe language can arrive also around 4, 5 years. - Interview, Teacher

170

Some think that Asperger’s is different than autism [....] In fact, in [my] experience, the distinctive characteristics are the language delay in the sense that if a child has in his history from very young a history of language delay therefore – then maybe he starts talking also very very well and reaches a good cognitive level, but he started from a situation of delay, well, we talk about high functioning autism. If instead the child has a story of completely normal development, or even early acquisition [of language] […] in that case [it would be] more Asperger’s Syndrome. Some say also that in Asperger’s syndrome a characteristic aspect is clumsiness […] but this is not such a distinctive element in the sense that also some of the kids that have high functioning autism could also be [clumsy] [….] The [intelligence] quotient can be high, anyway, in both cases. In general however the [intelligence] quotient of the people with Asperger’s Syndrome provides for the verbal quotient, therefore the verbal ability, being higher than what is called the “performance” quotient. While in subjects with high functioning autism it’s the reverse. - Interview, Neuropsichiatra

Even in these descriptions, what Asperger’s Syndrome and “High Functioning Autism” share is their lack of intellectual disability. In practice, this creates a strong association between the two concepts.

When I collected my data in 2012-2013 and the DSM-5 was only starting to be released in English, professionals spoke about the response of advocacy movements in

Italy to the removal of the Asperger’s label:

The problem for the people who founded the Asperger’s associations, [is] the fear that they could then, in one pot, lose the distinctive aspect of high functioning [autism] and of Asperger’s. - Interview, Psychologist

I understand that now it’s been decided to eliminate [Asperger’s] from the new diagnostic manual, even if it’s an enormous pain for the people that have a diagnosis and that identify themselves as “Aspie.” And therefore, from the ethical point of view, I find a truly notable difficulty. - Interview, Consultant

As of this writing in 2015, the dust has settled in the sense that the DSM-5 has been published and the diagnostic category of Asperger’s is well and truly removed.

Groups focused on Asperger’s Syndrome did and do actively include people with autism 171

in their mission statements, following this trend of linking the two diagnoses rather than focusing on the uniqueness of Asperger’s itself. The website of national advocacy organization Gruppo Asperger explains the difference between Asperger’s and High

Functioning Autism (or better, “autismo con bisogno di supporto non intensivo” – autism with need of non-intensive support) as principally linked to the earlier development of language in people with Asperger’s. The site uses the terms syndrome di Asperger and

HFA (high functioning autism – autism ad alto funzionamento) interchangeably and explains furthermore:

A partire dal 2014, sarebbe possibile sostituire la definizione di “Sindrome di Asperger” con quella di “Spettro autistico”, specificando che la persona interessata non ha disabilità intellettiva, e che non ha necessità di un supporto intensivo. Starting in 2014, it could be possible to substitute the definition of “Asperger’s Syndrome” with “autism spectrum,” specifying that the person of interest does not have intellectual disability and does not have need of intensive support. (Gruppo Asperger Onlus 2014)

Like professionals, parents and self-advocates use terms like high functioning autism alongside Asperger’s. This practice suggests that the loss of the diagnostic label may not be as devastating as some anticipated. What remains to be seen in the coming years is if the term Asperger’s remains in popular discourse and self-identification. Will

Asperger’s become a diagnosis “you have to fight to get” (Dumit 2006)? Will it become an ex-diagnosis, like homosexuality when it was famously removed from the DSM in

1973? Will it simply be the common name for a diagnosis that is long and clunky in its clinical terminology?24 In 2014, it is too soon to tell. However, none of these possibilities

24 The DSM-5 (APA 2013:51) requires the recording of severity levels for both social communication and restricted, repetitive behaviors, as well as specifying the presence of absence of accompanying intellectual impairment and language impairment, suggesting that a diagnosis that would formerly have been called Asperger’s disorder may now be written as “autism spectrum disorder requiring support for deficits in 172

would prevent us from calling Asperger’s a “transient” or “niche” disorder, a theory which applies primarily to the professional recognition of a diagnosis. This section has demonstrated that professionals often equate Asperger’s with autism (generally high functioning autism) and seem fairly accepting of the change.

What Causes Autism

There are many theories and uncertainties about the cause or causes of autism.

There is no blood test for autism, no definite gene or other type of biomarker. Contested etiologies provide space for many different theories, research agendas, and interventions.

Etiology is often tightly linked to intervention. I therefore asked professionals what they thought was the most likely cause of autism. Their responses are categorized in Table 6.

Professionals often stressed that the causes of autism are unknown and hedged their responses, but generally agreed that autism had its roots in biological and likely genetic causes. Although two professionals argued that relational or affective factors might combine with a genetic predisposition to create autism, professionals were most certain on what was not the cause of autism: the psychogenic theories of the past, most famously the “refrigerator mother” theory often attributed to Bruno Bettelheim, which claims that autism results from “cold” mothers who failed to create the appropriate affective bonds with their children.

social communication and requiring support for restricted, repetitive behaviors, without accompanying intellectual impairment, without accompanying language impairment.” 173

Table 6: Possible Causes of Autism (Professionals) Cause # of # of Professionals Professionals Supporting It Rejecting It Genetics – General 26 1 Biological, Neurological, Organic 13 0 Genetic Predisposition 11 0 plus Environmental Trigger Genetics – Hereditary 9 1 Vaccines 4 6 Environmental 3 1 Genetic Predisposition 2 0 plus Relational or Affective Trigger Genetic Predisposition 1 0 plus Bioagent such as Virus Biological plus Environmental 1 0 Society that pathologizes differences 1 0 Digestive Causes 1 2 Pollution 0 2 Psychogenic/Relational/”Refrigerator 0 19 Mother”

Autism spectrum disorders are associated with a range of specific genetic disorders. Professionals often considered these disorders – such as Tuberous Sclerosis and Fragile X Syndrome – to be causes of autism or co-occurring with an appropriately made autism diagnosis. A few professionals differentiated between these cases of autism and others by referring to “primary” and “secondary” autism – secondary autism being autism resulting from another known condition. Others talked about “autismo puro”

(pure autism) in contrast to autism associated with other conditions. As we will see in

Chapter 5, parents did not always agree with professionals’ attribution of autism to their child; several gave primacy instead to the genetic disorder.

This section has answered the question “what is autism” for professionals who work with this population. We have addressed the characteristics of autism, the relationship between Asperger’s syndrome and autism, and the causes of autism. This 174

work sets the stage for an understanding of autism treatment and management, to which we now turn.

Section 2: How Should Autism be Managed?

Section 1 presented Italian professionals’ definitions of autism. In addition to the triad of characteristics listed in the DSM-IV, participants identified important features of autism such as a tendency towards behavioral problems and difficulties in sensory and perception domains. Taking these characteristics together holistically, they saw autism as a different way of being in the world and often described the difficulties a person with autism faces as resulting from a mismatch between their characteristics and a world that is not structured for them. What are the implications of this perspective for treatment and management of autism? This section unpacks several philosophies and specific approaches. Table 7 lists these philosophies in the order in which they will be discussed in this chapter, starting with those that participants considered less appropriate for people with autism and moving towards those that were more commonly lauded. Table 7 also lists specific approaches and tools associated with each philosophy (though many are associated with more than one). These specific approaches will be discussed later in this chapter.

Table 7: List of Philosophies and Approaches

Philosophy Synonyms Specific Approaches Associated and Tools Names Psicoanalitica Psicodinamica Psicoterapia Bruno (psychoanalytic) (psychodynamic) (psychotherapy) Bettleheim Psicoanalisi (psychoanalysis) Psicologico (psychological) Ufficiale Tradizionale (Neuro)psicomotricità Local Health (official) (traditional) Logopedia Board 175

Philosophy Synonyms Specific Approaches Associated and Tools Names Psicoanalitica Psicodinamica Psicoterapia Bruno (psychoanalytic) (psychodynamic) (psychotherapy) Bettleheim Psicoanalisi (psychoanalysis) Psicologico (psychological) Massimo Borghese Psicoeducativo Abilitativo TEACCH Eric Schopler, (psycho- (Abilitative) Gary Mesibov, educational) Cognitivo- Theo Peeters, Comportamentale ABA Enrico Micheli (cognitive-behavioral) Verbal Behaviors Educativo Pivotal Response (educational) Training Psicocognitivo DIR/FloorTime (psychocognitive) Denver Model Stanley SonRise Greenspan PECS Alternative and Augmentative Communciation (CAA) Social Stories Cognitivo- Abilitativo (abilitative) Superability Lucio Moderato Comportamentale Behaviorismo ABA (cognitive- (behaviorism) Functional Analysis behavioral) Cognitivo, (Antecedent- Comportamentale Behavior- (cognitive-behavioral) Consequence) Neo-Comportamentale (neo-behavioral) Relazionale Umanista (humanist) (Neuro)psicomotricità (relational) Dinamico-Relazionale DIR/FloorTime (dynamic- relational) Denver Model “Emotivo” (emotional) Evolutivo (evolutionary) “Pietista” (pietist/pitying) Psicoanalitica (psychoanlaytic) Psicoeducazionale 176

Psicoanalitica

As in Brazil (Rios and Costa Andrade in press) and France (Chamak 2008), Italy has experienced a conflict between a psychoanalytic camp and other professionals who work with autism. One participant explained:

Regardless of the guidelines […] they tell you “It’s not right, because it isn’t enough, because the people with autism have an emotional dimension, a symbolic dimension,” I say: “ok, I work here too – even the cognitive-behavioral approach does not mean that you do not work with emotions, of course! But they give it to you only in terms of behavior that… - then everything that I was reading even yesterday was: not everything can be scientifically validated, because the people have an individual dimension, but sure! We know that too! But still there is really this diatribe and many – they are rekindling it, it’s not sleeping at all, it’s re- emerging, in my opinion, it’s worsening. - Interview, Psychologist

Participants raised psychoanalytic theories (psicoanalitica, psicodinamica) and therapies 177

(psicoterapia, psicoanalisi) primarily to reject them, and also as relicts of the past. Some professionals acknowledged that such approaches could maybe be useful to parents strictly in terms of providing psychological support, but not as a way to confront and treat autism instead. Some professionals rejected psychoanalysis because they rejected the causal theory associated with it – refrigerator mothers and poor parenting. Others rejected psychoanalysis – like logopedia – because it is a talking theory that makes little sense for people with communication difficulties. Even for those with good language skills and high verbal IQs, professionals lamented that psychoanalysis is based on metaphorical thought which is characteristically difficult for people with autism. Many pointed to the lack of scientific evidence and/or support in the national guidelines.

However, there were professionals who found a legacy of psychoanalytic theory useful in working with people with autism:

Each type of intervention has its pros and its cons, such that we use aspects of classic behaviorism, aspects of DIR, aspects from the psychodynamic traditions, therefore we use behaviorist techniques, but in this context with continual attention to the subjective aspects that are of a dynamic derivation. - Interview, Psychiatrist

In as much as psychodynamic theory was associated with relational approaches, participants still found it useful. In as much as it was associated with psychoanalysis, psychotherapy, talking therapies, and treating the family in order to treat the child, they did not.

Psicologico

While the term psicologico could be synonymous with psicoanalitico, participants also referenced it in terms of visits with a non-psychoanalytically trained psychologist who might provide support to people with autism or their parents. Participants referenced 178

psychological support mostly for people with Asperger’s, but as a means to walk them through emotionally difficult times or to teach them coping mechanisms and social skills, not to psychoanalyze them.

Ufficiale

I asked participants what someone with an autism diagnosis receives in terms of rights and services. People with autism had the right to certain economic supports, to attend inclusive public schools, and to be taken into care by neuropsichiatria. Participants consistently explained that the local health boards directed families towards neuropsicomotricità (neuropsychomotor therapy) and logopedia (speech language therapy), though there may be long waitlists to access public services and many families had to pay privately. Participants referred to the combination of neuropsichaitria and logopedia as ufficiale or tradizionale and lamented that these treatments were often not tailored specifically for autism. However, there were many therapists who had specific training in autism and collaborated with other professionals in equipe (medical teams) or worked privately with people with autism. Both logopediste themselves and staff members at various locations lamented the recent absence of these therapists from public services and the need for parents to pay for them privately. I address these interventions together as they were frequently referenced together. They are used most by very young children.

Most participants referred to neuropsicomotricità by its shorter name, psicomotricità. However, as we will see below, psicomotricità also refers to an entirely separate school of intervention. As a psicomotricista equated neuropsicomotricità with fisioterapia (physical therapy) In short, “La fisioterapia, la neuro, deriva dal movimento 179

patologico, ecco, e quinid noi, per noi il movimento è il mezzo. Per la neuropsicomotricista, il movimento è un fine” (Physical therapy, the “neuro,” derives from pathological movement, look, and therefore we [psychomotor therapists], for us the movement is a vehicle. For the neuropsychomotor therapists, the movement is an end).

Similarly, a neuropsicomotricitsta told me about her job that “nei paesi anglosassoni non esiste, questa figura professionale, quella più vicina è il terapista occupazionale” (In

Anglo-Saxon countries this professional figure does not exist, the closest one is occupational therapist). This professional placed her work under the relazionale philosophy and similar to DIR/Floortime. She explained, “la psicomotricità ha il pregio, nonché difetto, di non essere un approccio rigido e codificato. E questo da un lato permette di modellare nel qui e ora l’intervento su ogni singolo bambino” (Psychomotor therapy has the virtue, and also defect, of not being a rigid or codified approach. And this on the one hand permits us to adjust in the here and now the intervention for each single child), but on the other hand it is difficult to evaluate scientifically. In practice:

It’s an approach obviously of a relational type, that puts the child in relationship before everything else... with – it seeks to make him relate with the parent, then with the environment, with other people, with the strangers, which are… that is the therapist and with the world around him… through a process of progressive regulation, self-regulation, no? and a progressive awareness of what – of attention about that – both of the environment, but of the situation, that is, a capacity to read the environment and the predictability of the situation of the surroundings, [starting from] the stimuli. But this means managing to give your attention to everything that is around … in that moment. We see children that improve so very much from the viewpoint of skills in contact, gaze, responding to one’s name, holding, sharing attention on objects. - Interview, Neuropsicmotricista

Logopedia can be translated as speech therapy, but does not exactly equate with it.

As a logopedista comments:

I think that yours [in the United States] is more “speech therapy” and “speech” is 180

spoken language, and instead our logopedia is concerned with communication and with language, therefore already our work the communication is already provided for, in very form, that is: visual, verbal, gestural, whatever. We are concerned with communication. - Interview, Logopedista

As with neuropsicomotricità, professionals objected to “classic” logopedia that is not specifically focused on autism. Some took issue with the entire concept of speech therapy for people with autism who do not speak, but others pointed out the broader reach of logopedia.

If I test you with a standard logopedia test, in which I ask you to repeat and name things and you don’t have language, clearly… my test won’t result… reliably. But logopedia means communication, and the communication you can evaluation, you can teach it also in other… in other ways. - Interview, Psychologist

Logopediste who worked with autism therefore worked also with visual communication and were involved in developing visual tools for people with autism to use.

There were many types and subschools of logopedia, some of which focused specifically on autism. Two professionals named and rejected one specific autism-specific logopedia strategy, that of Massimo Borghese. One described this method as terrorizing patients through “modi bruschi” (brusque strategies). However, there were also local therapists who worked with autism specifically with methods that were generally well received.

The other official service provided by the State is integrazione scolastica, described in more detail in Chapter 2. Although not always perfectly executed in practice, several professionals praised integrazione scolastica in theory and principle, describe it as “un fondamento della nostra, è un valore per noi” (one of our bedrocks, a virtue for us) and “una delle migliori legge della inclusione scolastiche e sociali” (one of the best 181

laws of educational and social integration). The rarer detractors, however, stated the law was all politics and that having students in inclusive classrooms was not always the best choice for them.

The majority of participants with autism in this study had finished their scholastic careers by the time of the study, but the experiences from school certainly remain important in their adult lives. Professionals raised several concerns about schools, most prominently a lack of financial resources and lack of training for professionals. They frequently lamented the fact that a students’ school experience was so closely linked to the “buona volontà” (good will) of his or her specific teachers, not the valor of the system itself. Several professionals who worked with older adolescents and adults argued that people with disabilities learned more in centers than at school. The occasional professional – generally those who worked with students with Asperger’s and autism with need of less intensive support (‘high functioning autism’) – argued that schools might be good for students with other disabilities but not with autism due to the particular characteristics of autism:

Well, from my own experience, I must say that with respect to the integration of people with, for example, learning disability, rather than a sensory deficit, I’ve seen good experiences, where the integration has in effect worked and where in effect there were also some good results thanks to it. Instead, with respect to autism spectrum disorder, I must say that meanwhile many people who arrived here from quote-unquote “normal” experienced also moments of frustration and real difficulties, but really because the school was not outfitted, probably still does not have the knowledge or competencies to be able to address integration in the schools. And then I saw – but here, in a group mostly of youth with autism – really because there are the same ways of communicating, the same characteristics, the same way of approaching certain situations, that tie youth have experienced it in a calmer way, because they have found an environment more adapted to them, where they have even made friends, because anyway they have found youth with the same type of interests. [….] Because where instead I have seen situations at high school, where there are aspects like staying in class, listening to the lesson, doing tests, integration, where there are a lot of requests 182

that for our youth are not high requests – they are too high, but not from the standpoint of competence or cognitive ability, but really high in terms of handling anxiety, of handling stress, it’s very tiring for them. Whereas in a situation more tailor-made surely it makes them feel more comfortable. - Interview, Coordinator

As this professional describes, there were occasional educational programs tailor-made specifically for people with autism. She describes a program for older and more academically achieving students that focused on the use of visual aids. Another program to which many professionals made reference offered a dedicated classroom for children with autism in an inclusive, which allowed them to spend part of the day in a setting entirely structured following the TEACCH protocol and part of the day in the main classroom or in joint activities with certain other students. As one teacher explained, “La cosa che mi piace molto di questo progetto è che è proprio una scuola pensata e strutturata per I nostri bambini in cui loro hanno il momento in cui sono assolutamente con i loro compagni di classe” (The thing that I like so much about this project is that it’s really a school thought up and structured for our children in which they have moments in which they are absolutely with their classmates).

In short, neuropsicomotricità, logopedia, and integrazione scolastica are those services and rights supported by the local health boards that can be very useful for people with autism, particularly when they are younger, but which professionals often criticized for not necessarily being autism-specific. As one professional explains:

The problem is that currently we are using in Italy therapeutic programs in my opinion traditionally old, therefore psychomotor therapy and logopedia that the guidelines for autism and international research have said are not adequate for autism because they need structured psychoeducational interventions, intensive but not obsessive. - Interview, Coordinator

The following subsections turn to these structured psychoeducational interventions and to 183

how professionals worked to create spaces adapted to the needs of people with autism.

Psicoeducativo

The vast majority of approaches fall under the umbrella that participants called varyingly psicoeducativo, educativo, and abilitativo. Many participants also called this approach cognitivo-comportamentale, but this term was also used to refer specifically to cognitive-behavioral therapy. I will first unpack the psicoeducativo approach, then turn to cognitivo-comportamentale.

Participants used the terms psicoeducativo (psychoeducational), educativo

(educational), and cognitivo-comportamentale (cognitive-behavioral) to refer to approaches approved by the 2011 National Guidelines for the treatment of autism spectrum disorders (Sistema Nazionale per le Linee Guida-Istituto Superiore di Sanità

2011). The lay summary of the guidelines refer to these approaches as “pedogogici ed abilitativi” (pedagogical and abilitating25) and specifically recommend parent-mediated interventions starting from a young age, naming in particular applied behavior analysis

(ABA) (Sistema Nazionale per le Linee Guida-Istituto Superiore di Sanità 2012). The broader guidelines (Sistema Nazionale per le Linee Guida-Istituto Superiore di Sanità

2011) use the term educativo as well and recommend specifically TEACCH.

Participants explained the psychoeducational or educational approaches as follows:

Cognitive-behavioral therefore psycoeducational therefore the idea is to concentrate attention on teaching the person with autism all those skills that are useful for daily life, for their life, to be able to have a life, let’s say, of success in the sense that is realized, dignified, happy, and also to support the family and then the people that work with them. I make reference a lot to the philosophy of the

25 A neologism from “riabilitativo,” rehabilitating, given that teaching skills to people with autism is not exactly rehabilitating, but abilitating for the first time. 184

TEACCH division. - Interview, Psychologist

The best way to help people with Asperger’s Syndrome is to help them from an educational standpoint. That is, to correct some of their behaviors, help them to learn new instruments that they do not have, to relate better to other people, to organize better than own lives, to manage situations. [….] There are different approaches. But all of them should be based on educational help and therefore helping the person to understand reality, decode reality for himself, and giving him the best tools for interacting and understanding what are his true gaps and improving them. - Interview, Advocacy Organizer

The psychoeducational philosophy encompasses all those approaches and strategies that focus on teaching people with autism and helping them learn, throughout their life. They may include instruments like visual agendas, social stories, and alternative and augmentative communication. The specific programs of TEACCH and

ABA are discussed in more detail below. Before delving into this detail, I need to address a synonym for psychoeducational that sometimes has other meanings – cognitivo- comportamentale.

Cognitivo-Comportamentale

Cognitivo-comportamentale (cognitive-behavioral) was the most common of the above terms, yet it is one of the most difficult to parse. While cognitivo-comportamentale often serves as a synonym for psicoeducativo, the term can also describe what others call simply comportamentalismo – behaviorism. Participants seemed to use the terms interchangeably – for example, many participants classified ABA as one or the other – so

I began asking for the difference. One professional explained:

The cognitive-behavioral [approach] is a little bit less... well, at one time the behavioral approach was training, was considered like training. Therefore you learn by reflex that is, not because you have really learned, no, but because you were conditioned to learn. And so there. But in other situations, you would not be able to do this thing, no? The cognitive behavioral [approach], on the other hand, 185

you work more instead on… uh… more on making them learn what helps them do this this this and this other thing, not just one thing. That is, what you are learning is not because I am training you to do this thing like a reflex of a behavior that you do because there was this thing, fine, I give you a candy and you respond to me, if I do not give you a candy, you do not respond to me. This. But that I give you, uh, that you must do it, you must respond not so much because I give you the candy but because it helps you do so many other things. - Interview, Coordinator

However, when we look at how participants described simply comportamentismo, the parallels and overlaps are striking, and also comportamentalismo can be described as psicoeducativo.

Always starting from the assumption that for me psychoeducational means using all the strategies and knowledge that we have ehm… pursuant to the person to develop their abilities. For which, like I told you the other day, ABA; TEACCH; the Denver Model, ehm…. I don’t know, CAA, Alternative and Augmentative Communication, FloorTime, Sonrise which is English… that is, there are a thousand things. [….] Therefore, the approach is always that, behavioral, neo- behaviorist, I don’t know, call it what you want, with those techniques there. - Interview, Psychologist

The Linee Guida (SNLG-ISS 2011) make a diversion between educational interventions and a group they term “Interventi comportamentali e psicologici strutturati” (structured behavioral and psychological interventions) including ABA and early intensive behavior interventions (EIBI). These structured approaches are most often used with (and evaluated for) pre-school children. With older children, adolescents, and adults, participants referred to the Superability Model, the consistent use of Functional

Analysis (Antecedent-Behavior-Consequence), and the continued use of ABA teaching strategies similar to discrete trial training as examples of this approach. One professional described the use of rewards for fulfilling certain individualized goals for good behavior.

She described this system both as a tool taking from the cognitive-behavioral approach and a strategy that is “tipicamente comportamentale” (typically behaviorist). These 186

techniques strive to create a carefully structured physical and social environment that facilitate the learning of people with autism by removing distractions and making things more predictable.

Adding the prefix “cognitivo” stresses the evolution of behaviorism beyond strict

Skinnerian “addestramento” (training). One professional explains this evolution as a combination of behavioral and relational approaches:

[We seek] to integrate the traditional behavioralist techniques and in their even more recent evolutions with constant attention to the aspects of motivations, the effects, and the person. Because we cannot do a good rehabilitative work and we cannot guarantee a good quality of life the people with whom we work if we treat them as just a sum of behaviors to correct without investigated what there is under that behavior, what is, for example, the distress or suffering that a challenge behavior or problem can express [….] The problem is a matter of integrated all the behavioral techniques with a constant attention to the subjective aspects, to feelings, and to the emotions of the person. We aren’t dog trainers, right? We are dealing anyway with people. - Interview, Psychiatrist

While, as seen above, many professionals were not shy about using the term comportamentalismo to describe one instrument among many under this approach, the term comportamentalista might also be used in a derogatory way when objecting to cognitive-behavioral approaches. One professional recounting the tale of staff complaining about new cognitive-behavioral strategies as “comportamentale,” but she herself explained, “Che poi invece cognitivo-comportamentale non è proprio comportamentale ma vabbé” (But then cognitive-behavioral is not really behavioral but whatever).

As a synonym for psicoeducativo, the cognitivo-comportamentale approach involves the strategies listed above. As cognitive-behavioral therapy specifically, it involves specific strategies such as prompting, constructive sabotage, and antecedent- 187

behavior-consequence (ABC) analysis. It employs highly structured instruments of evaluation. While it does not inherently involve a relational approach, the two are often combined.

Relazionale

Participants also described their approach is relazionale, synonymous with evolutivo (developmental) and umanista (humanist). This approach rarely stood alone but was an important or even central characteristic of their work for some participants. The following two examples from professionals explain in more detail:

Well the philosophy is... in part behaviorist, in part humanist. They are [like this], because anyway we are Italian (laughing), and in my opinion very humanist. In the sense that we like more than working on behavior, on skills, tasks, uh, we also have opportunities to experiment, some experiences that seem to have little value from the standpoint of learning but that have a great human value, like birthdays, birthday parties, vacations [….]. We are, yes, in my opinion we are very humanistic as a philosophy. In my opinion this is a very Italian characteristic, in my opinion, yes. - Interview, Educatore

The most important instrument is the relationship, to understand that […] it [is] impossible that that the child does not have anything to say and if he has nothing to tell us it is we who do not succeed to read him. This is why it’s the relationship. Clearly in a welcome and attentive environment. This [is] fundamental. - Interview, Coordinator

In short, this term served as a reminder that their work was individualized and person- centered, and indicated a preference for maintaining good relationships between the staff and those that used the services over strict adherence to any particular strategy. Like in the psychoeducational and cognitive-behavioral philosophies, in the relational approach it is important to create environments that are welcoming to people with autism by engaging them at the relational level, seeking to enter into relationships with them based on their interests and presupposing that it is possible to do so. 188

Despite the importance of this style of approach for many participants there were also criticisms. One professional raised the concern that this approach by itself is difficult to execute professionally. Another referred to it as “pietista,” pitying. Professionals also raised concerns with the implications of stressing the relational perspective. It could be a point of contention for those who felt it implied other work was not relational:

It’s not like that, and if you did not enter into relationships, if you do not have a relations with who you have in front of you, you never teach anything. While the idea that we on the other hand do not have… do not enter into relationships with them. We act as conductors or trainers without having (laughs) without being aware of all the relational-affective part. It cannot be. Because it cannot be. Because anyway the fact to sit here talking with you, anyway it’s something, no? If I don’t enter into relationship with the kid, the kid will let you see, he won’t even respond to you. The fact that they are people, that they are kids that with some of us don’t work and with others do, and vice versa. This is something that is difficult to make others understand. - Interview, Coordinator

In fact I often find myself not very much in agreement with some of my colleagues because it is obvious that you must have a good relationship with patient. But this, you owe it and (claps) stop. But you must construct these things at the level of reality, no? and therefore you absolutely must also do the exercises and anyway have a method. - Interview, Psicomotricista

Nonetheless, many participants described this as a particularly Italian approach or an

Italianization of other approaches, and it cannot be undervalued when considering the introduction of specific protocols in a setting.

Ecologico

Another term that three professionals used to describe their approach was

“ecologico.” In their own words:

Our approach is more – how to say it – it seems to me more ecological, that is... like… that the language must come in its natural context and not… for… Then instead of the ABA treatment itself, as a complex treatment I find that it is very effective for skills, for the autonomy of the child, this is efficiency. But for language you need to pay attention, more attention. 189

- Interview, Logopedista

Well, [our philosophy is the] creation of a context that we have called ecological but which means, ecological does not mean “in the countryside,” it means in harmony, it means that the activities, interventions, attendance of people, all must be harmonized and each intervention that you do with the people with autism must be contextualized, eh? Nothing gets proposed that doesn’t enter into this moment here and this environment. This is the premise. After that, each intervention and activity that gets proposed must be meaningful and this meaning must be explained, in ways adapted to that person, a way that can be understood. Moreover, we maintain that it is very important the take for the subjectivity of the person with autism and therefore seeking to amplify as much as possible the tools of communication, each at his level, and understand what is their intrinsic motivation because this is something that improves the quality of life, also for us. [….] In the end… doing it together. Like Meltzoff said, the famous phrase, “from shared actions to shared minds.” That is, therefore working together, one learns to stay together and maybe also starts to share a thought. - Interview, Psychiatrist

One professional described this work also as “meta-cognitivo” (meta-cognitive).

Professionals advocating these approaches referenced scholars such as Bob Shalock and

Stanley Greenspan. These approaches focused on creating an environment that was adapted to people with autism, but based not so much upon the characteristics of autism but on the characteristics of the individuals themselves and their intrinsic motivations.

Psicomotricità

As mentioned above, the term psicomotricità can refer to a therapy with or without the prefix “neuro.” This chapter already discussed neuropsicomotricità, which is close to physical and occupational therapy. How does psicomotricità differ? The term and practice derive from the French. One psicomotricitsta explains:

Psychomotor therapy derives, culturally, from psychiatry and motor education for dance, from rhythm, so from spontaneous movement. […] For us the movement is the vehicle for expression, for the communication, for learning. It’s not an end. - Interview, Psicomotricista

In psychomotor therapy, the therapist uses games and spontaneous movements as 190

instruments to address communication and cognition difficulties. In the case of autism, communication is the first step. Psicomotricità may be used for an intervention between a person with autism and the therapist, or mediated with animal-assisted therapy

(sometimes called Pet Therapy), especially with dogs. In either case, the therapist seeks to understand the interests of the person with autism and engage them through those activities.

Well, let’s that with a child with autism, me being a psychomotor therapist, I have a psychomotor approach, with the child with autism. The fact that there’s an animal, obviously, makes me change some aspects … but it does not radically change my way of doing things. When a child enters into the room, I look at what’s around him, at what he’s interested in, what pulls his attention. Because especially with a child with autism, you must enter a bit into their world of interests. Then you try to open them up… to our world. - Interview, Psychologist

To accomplish this, the therapist might start by simply staying with the child while he or she interacts with her environment (including animals) and pursues his or her own interests. Only once the child realizes that the environment is created for him or her and that the therapist is supportive will the therapist enter into closer contact with the child and start working on developing specific communication and/or cognitive skills.

Auto-Mutuo-Aiuto

A final philosophy, particularly present in one social/recreational activity group, was that of auto-mutuo-aiuto (self-help groups). In this model, people with autism

(particularly Asperger’s) can help each other and themselves by sharing their experiences.

This model is also intergenerational – older people with autism can share what they have learned with younger people with autism, suggesting tools that may help the younger through experiences the older have already had. One tool of this model is formal conversation groups, but it can also be exercised in informal settings by introducing 191

people with autism to each other and providing the opportunity for an exchange of information.

This perspective was not necessarily mutually exclusive with other philosophies, although it often stands alone. In settings not organized around auto-mutuo-aiuto, I noted practices that may fall under a similar umbrella, in which people with autism held roles as tutors or volunteer aides for other people with disabilities (autism and otherwise). In one setting, staff instructed one ospite in how to help another complete a task. In other, an ospite requested to volunteer alongside a group of youth that were temporarily helping at the service, and was able to do so. In these roles, people with autism not only received assistance, but also gave it.

Specific Approaches

These eight categories represent the overarching philosophies taken towards autism, which are often combined. Given these overarching categories, the following paragraphs look at how participants discussed more specific approaches. Table 8 presents all of the interventions participant named in order of frequency, demonstrating the relative popularity of each in the world of autism treatment – whether they were evaluated positively or negatively. Rather than address each approach in detail, this section focuses on two main themes: (1) the need to remain flexible and avoid, as practitioners, manifesting the same “rigidity” as the patients with autism;26 and (2) the contested status of certain activities-based interventions that some considered not necessarily “vere terapie” (true therapies) or “vero e proprio intervento” (real and true

26 I have made versions of this argument elsewhere, at the Society for Applied Anthropology Annual Meeting (Cascio 2014b) and an upcoming article in Culture, Medicine & Psychiatry (Cascio 2015a). 192

interventions). More details on professionals’ evaluations of certain therapies will be raised in the next chapter when they are compared to parents’ evaluations, but a quick glance at their evaluations can be seen in Table 8.

Table 8: Specific Approaches References

Approach Name References in Support Integrate Reject Interviews and or Fieldnotes Modify TEACCH 43 12 23 7 ABA 43 7 27 9 Medication 17 10 2 5 Diet 15 0 3 12 PECS 13 0 11 2 Alternative and 13 0 13 0 Augmentative Communication Facilitated Communication 11 0 1 11 Horse Therapy 10 2 6 2 Doman-Delacato27 10 0 1 9 Pet Therapy/Animal-Assisted 9 3 3 3 Therapy Floortime/DIR28 9 3 6 0 Abilità Sociale (Social Skills 7 4 3 0 Groups) Supplements 6 0 2 4 Chelation 6 0 1 5 Art Therapy 5 1 4 0 Denver Model29 5 0 5 0 Defeat Autism Now!30 5 0 1 4 Water-based Therapies 4 0 3 1 Sports Therapy 4 0 3 1 Feuerstein31 3 1 1 1 Dance Therapy 3 1 2 0 Dolphin Therapy 3 0 2 1 Social Stories32 3 0 3 0

27 Institutes for the Achievement of Human Potential (2014) 28 Greenspan Floortime Approach (2014) 29 Rogers and Dawson (2009) 30 Autism Research Institute (2010a; 2010b) and Silverman (2012) 31 The Feuerstein Institute (2014) 32 Gray and Garand (1993) 193

Approach Name References in Support Integrate Reject Interviews and or Fieldnotes Modify Sonrise33 3 0 1 2 Mindfulness34 2 2 0 0 Theatre as Therapy 2 1 1 0 Borghese Logopedia35 2 0 0 2 Hyperbaric Chamber 2 0 0 2 Pivotal Response Training36 1 1 0 0 Verbal Behaviors37 1 1 0 0 Homeopathy 1 0 0 1 Immunostimulants 1 0 0 1

The most frequently referenced specific interventions were TEACCH and ABA.

Participants often discussed these approaches together.

TEACCH is an educational and service provision strategy for people with autism developed by Eric Schopler, Gary Mesibov, and colleagues in North Carolina. The acronym sometimes stands for “treatment and education of autism and communications- handicapped children” but also encompasses the key philosophies of the program:

Teaching, Expanding, Appreciating, Collaborating and Cooperating, and Holistic. The term TEACCH refers most specifically the University of North Carolina TEACCH

Autism Program, founded in 1972. This system of community regional centers is supported by the State of North Carolina and coordinators activities of diagnosis, training, education, and employment. The Program also provides training to autism professionals around the world on the principles of structured TEACCHing. Several books and manuals detail these strategies, but in short TEACCH supports understanding

33 Kaufman and Kaufman (1995) 34 Mitchell (2008) 35 Borghese (2007) 36 Koegel (2011) 37 Sundberg and Michael (2001) 194

what they call the 'culture of autism' – the specific characteristics (both strengths and challenges) of people with autism, individualized person- and family-centered planning, careful structuring of the physical environment to facilitate the learning of people with autism, and most specifically visual supports such as pictographic icons identifying components of the environment and in agendas for people with autism (University of

North Carolina at Chapel Hill School of Medicine 2014).

Applied Behavior Analysis (ABA) refers to approaches derived from the work of

Ivar Lovaas who used Discrete Trial Training to teach people with autism through one and one interaction with a therapist. Many participants described this as behaviorist or cognitive-behaviorist. Some complained that ABA made children robotic and did not sufficiently generalize, but modified ABA to enhance generalization. Participants also referenced specific therapies based on ABA such as Pivotal Response Training and Verbal

Behaviors. TEACCH was generally considered more cognitive-behavioral whereas ABA was considered the more strictly behaviorist part, such as one-on-one work in which people with autism worked on small tasks in a distraction free environment with a single therapist to refine and maintain motor or cognitive skills. Most ABA practitioners suggest intensive therapy of 20-40 hours a week, which many participants found unfeasible for children in Italy, who by law should be going to inclusive schools most of the day. The majority of participants either supported these methods or integrated them with others under the umbrella of psychoeducational and cognitive-behavioral therapies supported by the national guidelines and the relational approaches that were important in many settings:

Yes, more or less I think these are the two, that is, the TEACCH approach and the dynamic-relational approach, that for sure. All in a very flexible frame, in my 195

opinion. [By] flexible I mean that we don’t (stick) to the TEACCH manual in such a rigid way but we try also to gather also hints from outside the TEACCH philosophy, in short, because there’s not just TEACCH. Interview, Educatore

The approach used [here] is the psychocognitive approach that is very broad and anyway we chose, how to say it, to consider the classic approaches therefore TEACCH, ABA, only for the part that seemed to work, therefore within the psychoeducational approach, we chose only those things that seemed useful for our type of intervention that is so particular because we don’t have a [physical] structure. [We don’t have one.] And therefore how to say, our work is itinerant labor. Therefore we definitely considered the structuring of the time, the environment, the activities, therefore the cleanliness of the context which is very important, the consequences of actions. Another thing very is important and... And this then clearly helps us give them a predictable, known world. - Interview, Pedagogue

Here in Italy, there is, people tend to wed themselves to an approach like “or you do TEACCH, or you do ABA, or you do...” no? And everything is a little, I don’t know what to say, categorized, can I say it like that? Instead I have an approach, a very broad training for which I seek to take all the approaches that I know that might serve for this particular child. Therefore some strategies that come from ABA, some strategies that come from TEACCH, strategies that come from DIR; etc. - Interview, Psychiatrist

Particularly with ABA, participants would stress the need to use it carefully.

Some of the language used in these quotes about integrating the approaches anticipates the criticisms of psychoeducational and cognitive-behavioral approaches as well, which focus on rigidity. A teacher explains how she faces these concerns from parents:

We wanted to give the message to the families because often they tell us (mimicking angry parent versus calm teacher) “Oh, but you do TEACCH!” “Yes, OK, that too.” “But in TEACCH there are just the little boxes.” “No, it’s not just that.” “But TEACCH means that you are rigid.” “No, it’s not just this. Here we use the structured education, the behaviors and behavior education, that is, there are other things. Certainly it is all inserted into the TEACCH philosophy.” “But no, it’s the TEACCH method.” “No, it’s not a method, it’s a philosophy, a program, that’s a different thing.” -Interview, Teacher

196

But even practitioners who use these approaches can associate with a risk of rigidity. A psicomotricista explains her hesitation about FloorTime:

Well, I like, regardless of the fact that it is a method, I get a lot out of the FloorTime method, but because the FloorTime method, like all the methods, has some precise rules, that you must – you know? – you must stay 20 minutes with your son at home, then 10 minutes no, then another 20 minutes – like 8 times in a day giving 20 minutes of activity and interaction with the child. At the beginning, on paper, it seems too rigid a thing. Then I saw the filmstrips of the children… when there were adequate parents in effect it is much more useful. Well I may wouldn’t do 20 minutes eight times a day, that is, it seems a little rigid like that. But I can understand that it’s, how to say, an incentive to a parent to dedicate some time to the child, for play and activities and interaction to open a little his interests, his range of interests. Well, probably, it’s given like a medicine, a recipe, because the families need to have such precise instructions. But, really, let’s say, the instructions on how to approach it and what type of activities to do are very useful. Well, this I like, so I tell you, I am really wedded to the principle of starting from their interests which is… is written immediately into FloorTime, really that, in my opinion, is the winning card. - Interview, psicomotricista

In this narration, the therapist explains her initial hesitation in hearing about FloorTime, reading about it “on paper.” She read the precise rules, down to the minute, as very rigid.

However, she saw the intervention as effective and the precise rules as perhaps necessary for some parents to do it correctly. However, she explains that she might not use it so rigidly herself. Other professionals explain their own perspectives on the risk of rigidity and how they might integrate or modify TEACCH to better suit their needs:

If someone says “I do TEACCH, only TEACCH”, it’s like saying I read only this, well this becomes – however, this, in my opinion, is not only for TEACCH. In our life it goes a bit like this for everything. Well the risk at times is to talk always with the same people while it is important in my opinion to be open to other types of experiences, integrating them [....] In my opinion, the disadvantage [of TEACCH which I use] can be to remain [...] little flexible, in short. Already our kids are so little flexible! (laughing) - Interview, Neuropsichiatra

In my opinion, for example, both ABA and TEACCH at their base have good ideas. Even I use their techniques, but in a much less rigid way, that is, the risk of this techniques is to create a sort of rigidity therefore teaching in sequence is fine 197

but I risk that the guy because more rigid, therefore if you do not do the sequence right, it doesn’t go well. It’s the only thing that I don’t share much with this method. That is, I share the thought, I’ll give you an example. Um, they [ABA practitioners] to teach you to set the table, for example they put a green rectangle, a yellow circle, and a red rectangle. The guy must place the placement over the green rectangle, the napkin on the red rectangle, and the place over the yellow circle. We, I, in order to teach my kids how to set the table, I use the same method but in a more natural way. For which for example I put the placemat and napkin down, the guy knows that he has to put the silverware over the napkin and the plate over the placemat. Therefore the same technique but seen in a less rigid and more natural way. - Interview, Therapist

Accusations of rigidity were not limited to TEACCH and ABA, but extended also to the use of special diets for autism. Special diets are most associated with the movement

Defeat Autism Now! (DAN) of the Autism Research Institute (ARI). In 2011, ARI dropped the name DAN, but it is still in use colloquially and was mentioned by this name in four professionals’ interviews. This approach is associated with a casein-free gluten- free diet, the use of various dietary supplements, and the removal of toxic metals via the process of chelation. Many professionals objected to chelation as dangerous, as reflected in the scientific literature. For the diets and supplements, professionals objected at times due to lack of evidence of the intervention as a whole or lack of evidence that a specific child had need of it. This latter group objected when people advocated special diets as a treatment for autism, arguing instead that it should be a treatment for gastrointestinal problems and that children needed to be tested for those problems, not assumed to have them due to their autism. Other professionals objected to the diets and supplements only in so far as they were considered a cure, given that they saw autism as a lifelong condition but not a disease from which one could be cured. When articulating these objections, two professionals drew still on the language of rigidity, for example:

I believe that a good diet effectively helps everyone, but a rigid diet, taking away 198

a series of ingredients, then risks provoking other problems due to a lack of some principle ones, look, therefore these are effectively interventions a little far from our thought. - Interview, Educatore

A third similarly complained that the diet was too “extreme” and therefore “against the nature of the person,” but did not use the language of rigidity.

Participants raised concerned of rigidity also for Doman-Delacato, a motor therapy involving a series of specific exercises that parents are expected to do at home.

This could include “sensory bombardment” of the person with autism with lights and noises, or exercises to move the body in a certain way. Many professionals rejected the approach or spoke of it disparagingly in passing. They objected to it as outdated or scientifically unsupported. One professional acknowledged that it may work with other populations, but not people with autism. The criticism of rigidity appeared in criticisms of Doman-Delacato as well. The psicomotricista who favored FloorTime above continues on to say:

FloorTime, really that, in my opinion, is the winning card. The others, Delacato, TEACCH, are too rigid. However, with some children... They work. I would start, however, with very small children, from a more flexible model, and at a certain age I would start with something more rigid, the moment in which the child needs to be directed. But from very young [...] I am more in favor of being de- structured, opening, making them flexible, because this is our reality. If I do not make them more rigid, when they are already rigid. I want first to try instead to mellow them out. - Interview, Psicomotricista

Professionals criticized a range of specific approaches – both those they found useful and those they rejected – for being too rigid. Just as participants sought to adapt the environment to better suit people with autism through structured time and space and the use of visual supports, they also rejected overly strict adherence to particular methods based on the characteristics of autism. Given that many participants saw rigidity as an 199

important characteristic of autism, it is no coincidence that rigidity is also the term they use to reject approaches to autism.

There is one group major of therapies that this chapter has not yet addressed, and those are the therapies based on pursuit of the arts, sports, and activities elsewhere classified as recreational. Professionals mentioned specifically art therapy, dance therapy, music therapy, theatre as therapy, therapies involving various animals, and therapies involving various sports. Some professionals advocated certain approaches. As seen above, animal-assisted strategies can be used in practicing psicomotricitista. Animals help facilitate the therapy by providing a motivation for the child, being easier to interact with, or engaging their attention when sitting with the therapist alone would be boring.

Many participants also referenced Ippoterapia (Horse Therapy), which works similarly.

Horse therapy was initially used for people with neuromotor problems and brain injuries, but was later used to facilitate therapies for people with autism similarly to the dogs. One participant also expressed interest in the potential of music therapy to help with language development late in life. While many services for adolescents and adults offered them, the majority of professionals expressed hesitation about these activity-based therapies.

For example:

Then there are instead maybe pleasant experiences, helpful and nice, for the children, but that get sold as therapies, no? I don’t know… pet therapy, music therapy, horse therapy… that are good things! … But it isn’t yet known how much they are therapy. Pleasant experiences, that the children do happily, but we don’t yet know if they can be thought of as true and proper interventions… therapeutic. - Interview, Neuropsichiatra

As with neuropsicomotricità and logopedia, professionals worried that these approaches were not sufficiently tailored to people with autism, but might work in certain cases.

Then there can be other things, I don’t know, Horse Therapy or Dolphin Therapy, 200

it’s not that they aren’t useful, but they are not specific for autism. Well if this kid likes the water, likes animals, and then is in an environment that is stimulating and motivating for him, and that in this environment obviously he can gain some social communication skills, welcome. But he can’t just do that. That is, this isn’t an intervention specifically for autism. Then if the parents want to provide it, in short, even this type of experience, why not? - Interview, Neuropsichiatra

The services at which I conducted participant-observation – the three Day

Centers, two Residential Centers, and two Social/Recreational Groups – used a variety of philosophies and approaches. Most used some combination of psychoeducational/psychocognitive, (cognitive)-behavioral, and relational philosophies, prioritizing each aspect in varying degrees. One residential service used an ecological approach. One Social/Recreational Group followed more of an auto-mutuo-aiuto model.

Although these services were in many ways very different – not only in that some were day services, others residential, and still others social or recreational but also in their size, their specific goals, and the tone of the day – what they had in common despite their different philosophies was their focus on created spaces well suited to the needs and characteristics of people with autism. Staff referred to the people with autism who attended the services using various terms: utenti (service users), ospiti (guests), residenti

(residents), atleti (athletes), soci (members), or simply ragazzi (guys).38 Throughout this section, I will use the term ospiti. Although certainly reflecting its own set of ideologies and assumptions, using the term ospite avoids some of the baggage of the term “service

38 The term ragazzi does refer specifically to younger people, and staff used it to refer also to ospiti who were older than the staff, even elderly. Only about very rare occasion did staff state that the term ragazzo might be inappropriate for ospiti past a certain age. However, I would argue that the practice of referring to the ospiti as ragazzi is not inherently infantilizing or disrespectful, because the term is most certainly also used among adults of varying ages as they talk to each other, calling out to a group of colleagues “ragazzi/e!”, not unlike the English expression “hey, you guys!” I have seen it happen both with superiors addressing subordinates and vice versa. Though an age-based term, it is perhaps the broadest and most neutral. 201

user,” at least in UK English, as unpacked by McLaughlin (2009). The term was commonly used by staff can include people with autism across the whole range of services.

Several specific approaches, tools, and instruments were used in these settings.

Commonly referenced specific approaches were TEACCH, ABA, FloorTime, CAA, and

PECS. Tools under and in addition to these approaches include behavioral techniques, diaries, daily agendas, task agendas, and other communication tools.

Some sites stressed cognitive-behavioral or behavioral techniques either as general practice or for use in specific cases. Behavioral techniques include prompting, fading, shaping, and reinforcements (but rarely if ever punishments). The notion of a system of prompting, fading, and shaping derives perhaps most famously from applied behavior analysis, and refer to specific techniques used in teaching new behaviors and skills. Staff at one day center explained that there were many types of prompts. Staff could “prompt” a ospite to accomplish a task verbally (saying instructions), physically

(manually guiding someone through a task), or gesturally (pointing, without words). One day, I accompanied the ospiti to a ceramics workshop where I learned about these prompts hands on. In a large open space lined with shelves of completed and in progress projects, everyone sat around a table working under the instruction of an art teacher and sometimes the guidance of staff. As my fieldnote documents:

[A staff member] told me to go help [this woman] use two hands. I nodded and picked up the stool. I sat between [her and another ospite] and asked [following the example of conversations I had heard between her and the maestra during a previous workshop]: dove l’altra mano? Poi: metti la. Poi: ancora. [Where is the other hand? Then I said: put it here. Then I said: Again]. [The staff member] walked over and told me: “prompt fisica” [physical prompt]. I talked while moving her hand 202

towards the creta. [The staff member] showed me to stand behind her and scaccia la creta [kneed the clay] with my hands over hers.

The staff member told me to use only the physical prompt today, because there had already been so much conversation that words fa confusion (create confusion). He explained to me that it was best to use “il meno possibile” (as little as possible) amount of contact during a physical prompt. Reinforcements are factors that occur during the desired behavior, whereas punishments occur after the desired behavior. Reinforcements can be positive in the sense of something added or negative in the sense of something removed. As an example, one of the most common reinforcements were social. Staff would give the ospite social recognition (such as saying bravo) as long as they continued a positive behavior but remove the social interaction when the ospite engaged in behavior the staff did not desire. For example, staff might intentionally not respond to requests that were not made properly, even if they understood what the ospite wanted, because they wanted to encourage the ospite to ask in a particular way (for example, for some ospite they may want to encourage them to ask verbally, for others to ask with PECS). The implicit underlying tenant here is that, contrary to popular beliefs that people with autism are not social, all people including people with autism crave social interaction.

Other forms of reinforcement were systems of incentive and reward, such as educational contracts. Educational contracts are agreements (dos and do nots) between ospiti and staff regarding particular behaviors or activities, written for and often by ospiti in a combination of words and images. The ospiti agree to certain behaviors (dos and don’ts), and in exchange receive a desired item, activity, or privilege, sometimes immediately but sometimes after collecting a series of tokens to exchange for a reward.

Staff often worked hard to make the rewards appropriate to the ospiti's interests and 203

motivations through initial meetings with prospective ospiti and their parents and ongoing conversations with the ospiti themselves. For example, many people with autism that I met had a strong interest in cars, so rewards might include seeing a staff member’s new car and asking questions about it, or the center acquiring a new automobile magazine for their library. At one Social/Recreational Group, staff stressed how contracts are written in the first person, such that the ospite is stating that he or she promises to fulfill it. The staff asked the ospite to sign the contract, making it a pact between ospite and staff. While most people I met with contracts talked about them only when staff referred them to the contract, two women showed a lot of interest in sharing their contracts with me. One woman invited me to see hers during my second visit at her Residential Center – a house in a residential area somewhat outside the central city proper, with color-coded rooms, visual guides on cabinets and drawers, and visual agendas posted near the entrance. I visited on a weekend, so I asked her ‘come andava tua settimana?’ (how was your week?) She told me it was good, and that she had eaten a particularly favored food – an allusion to the premio from her educational contract. She then asked me, ‘c’è l’hai il contratto?’ (do you have a contract?). When I told her I didn’t have one like she did, she told me to come with her and that she would show me hers. I followed her and she showed me the paper, describing the gist of it. A similar interaction occurred my first day at one of the Day Centers. Almost as soon as we had been introduced, one of the ospiti left the main room where I was waiting and went to her desk in the other room, retrieving and bringing to me a binder full of social stories and contracts, written in the first person and using a combination of images and words. She walked me through them page by page, not only reading them to me but asking me to explain the rules too. 204

Another (cognitive)-behavioral technique used is structured teaching. Day and

Residential Centers that drew from ABA and TEACCH used some version of structured learning. Although the vocabulary may differ from place to place, the principle was the same: ospiti learned tasks through rapporto uno-uno or lavoro in due in which a staff member directly teachers the ospite a task and repeats a cognitive, manual, or other task until he or she can do it not only alone, but alone without anxiety.39 Then the ospite does the same activity by him or herself, called lavaro al tavolo, lavoro in autonomia or lavoro indipendente. Drawing from TEACCH, this work is extremely structured not only in that the task itself is structured and the same from working with staff to working alone, but that in all tasks are lined up on a shelf to the ospite’s left, often but not always in little boxes (the famous scatolette referenced above). Ospite work on uncompleted tasks from the left, and place completed tasks on the right. This structure makes it very clear what tasks need to be done and when the work session will be over. Each site that used this method did so in a slightly different way, though the general structure was still the same, working from left to right. Some centers had actual little boxes with the tasks inside, whereas others had more of a variety of items. In one center, identically sized boxes lined the bookshelves on the wall, each with a label in the form of something from the inside of the box taped on the outside (for example, if it was sorting beads by color, a bead would be taped to the outside). In other centers, tasks were mounted on cardboard instead of inside boxes (for example, one cardboard base might have a box full of cubes and a container with a cube-shaped hole for an insertion task). Many of these scatolette were

39 Similar to discrete trial training, but participants never called it by this term. One defined this very specific process as “ABA,” which is associated with the technique of discrete trial training. 205

constructed using recycled or donated materials, highlighting the economic difficulty of this work. Some centers had dedicated rooms for this type of work, for the ospiti to work in a quieter, emptier space. Others had work stations lined up against the wall, created a quiet and clean space within the larger room where ospiti spent non-work time in other spaces, writing agendas, exercising, engaging in free time activities such as puzzles and reading, and so on.

Several written tools were visibly important in all of the settings. Day centers used diaries, agendas, and educational contracts. Diaries facilitated communication between the center and the homes of the ospiti, allowing staff to write messages to parents and caretakers and vice versa. Sometimes staff wrote them alone, other times in direct consultation with the ospiti. For example, at one day center I often sat in one of the leisure time rooms in the afternoon while staff filled out the diaries. The ospiti read magazines, did puzzles, played games, or listened to music during this time. The staff wrote in each diary, sometimes asking ‘che cosa hai mangiato’ (what did you eat?) or

‘cosa devo scrivere alla tua mamma’ (what should I write to your mother?). Some ospite wrote their own diaries to take home. Parents wrote back, and staff checked them daily to see if the parents had anything to note or share. Daily agendas outlined the activities of the day using objects, images, text, or combinations thereof. They were constructed in several different styles according to each person's needs. Some agendas were displayed as timelines on the wall, others in books, and others through the exchange of singular objects or images. There were images alone for those who did not know how to read, and images accompanied by words for those who did. Some images were photos, some PECS

(or PECS modified after discussing with the ospiti what images made most sense for 206

them), and some the ospite’s own drawings. While PECS were extremely common, there were also professionals who strongly objected to the use of iconic languages because, like spoken language, they were symbolic systems that would be more difficult for someone with autism to understand. Such professionals stressed the use of photographs instead, often taken from the ospite’s point of view. In some cases, staff prepared the agendas for the ospiti to use. At one Day Center, I arrived every morning before most of the ospiti and stayed with the staff in the main room, set up somewhat like a living room with couches, a small table, and a television. At the small table, staff and I created agendas by looking at the day’s schedule, and then finding the appropriate PECS icons in a binder and placing them on each person’s posted schedule. At others, ospiti prepared their own agendas with supervision. For example, I regularly arrived at one day center while ospite were completing this process and their general accoglienza. I walked into the dining room where ospiti were seated around tables, finishing their biscotti and tea. For many, staff made the agendas – images attached to a timeline with Velcro - showing them to the ospite as they did. For others, however, the ospite did most of the construction of the agenda. I documented the following fieldnote:

[Ospite] did his agenda with [Staff member]. [Staff member] said “facciamo la nostra agenda” (let’s do our agenda) – using the plural. [Staff member] asked [ospite] what day it was and about the weather. [Ospite] got the date wrong […] and [staff member] corrected him [….] Then [staff member] said the activities. At “cucina” (cooking) [ospite] asked “cosa cuciniamo?” (what are we cooking?) [Staff member]: non lo so, una sorpresa. Cosa cuciniamo? Vediamo cosa abbiamo comprato alle spese. Ti dico tra un po’. (I don’t know, it’s a surprise. What are we cooking? Let’s see what we bought. I’ll tell you in a bit).

While not all ospiti were as active in the construction of their agendas, these examples show that constructing agendas (and writing diaries) served not only as administrative tools, but also teaching tools and social communication events in which ospiti were 207

actively engaged.

In addition to daily agendas, some Day Centers, Residential Centers, and

Social/Recreational Groups used step-by-step task agendas for specific tasks such as physical exercises, cooking, setting the table, or changing clothes in the locker room.

Beyond individual agendas, several other communication tools were used across

Day Centers, Residential Centers, and Social/Recreational Groups. Some centers used

PECS for specific communication tasks, such as asking for items at lunch. One service also used facilitated communication by using the computer to converse with some of the ospiti. Written, visual, and tactile tools helped make clear and predictable environments.

Written tools included posted agendas of the entire day, week, or month at day and

Residential Centers, and lists of rules for participation at Social/Recreational Groups.

Visual tools included labels (PECS or photographic) on doors identifying what activities were done therein, and on coat hooks and lockers identifying to whom they belonged.

Some of the residential structures additionally employed color coding of the rooms to help the ospiti find their own room even more easily, including colored stripes on the floor. Several services used visual tools for specific activities, such as laminated sheets papers laid on the ground outlining an obstacle course in printouts of footprints, arrows, and figures of various exercises; or a visual list of whose turn it was to serve themselves for lunch. Tactile tools included toys or exercise equipment passed between participants in turn-taking activities such as games and repetitions of obstacle courses that clarify whose turn it is, or tokens to be deposited at the end of the course to indicate the number of repetitions.

In additional to specific techniques for day to day work with ospiti, several 208

instruments helped staff collaborate amongst themselves and create individualized plans for each ospite. These instruments included individualized educational plans (generally called programmi educativi individualizzati or PEI), evaluation tools, various types of team meetings, and tools to introduce ospite to volunteers and new staff.

Most centers organized individuals' annual activities and goals using programmi educative individualizzati (PEI), sometimes called a progetto di vita (life project) to avoid the scholastic associations of the former term. The exception was the one social/recreational activity group whose participants came solely voluntarily without

(necessarily) the planning and oversight of staff. PEI revolved around certain skills areas such as: cognitive prerequisites, socializing, communication, motor skills, personal care skills, cognitive skills, deductive logic skills, mathematics, reading, and writing, spatial- temporal skills, autonomy, independent work, and structured free time, and provided discrete goals within these domains. PEI are shared with families and, when applicable and possible with schools, social services, and other staff who work with the ospite in other contexts. At one site, staff also create a synthesis of the PEI, a very brief version, for the volunteers.

PEI are always tightly linked to various types of evaluation forms (schede di valutazione). Such forms allowed staff to monitor ospite progress over the course of the year. Places that used behavioral techniques would track for each ospite each day if he or she had accomplished or not, and if so if it was in autonomia (autonomously), con imitazione (through imitation), prompt gestuale (with a gesturing prompt), prompt fisica

(with a physical prompt), or prompt verbale (with a verbal prompt). Others might operationalize skills as being present, absent, or emergent. The specific type of form 209

varied from site to site – for example, the social/recreational group that held athletic practices tracked athletic skills, whereas others did not. However, all such forms allowed staff to track individuals’ progress over time and adjust goals accordingly.

Most services routinely held one or more of the following types of team meetings to help staff work together. In equipe meetings, an interdisciplinary group of staff meet to discuss how to run activities and address specific concerns. In supervisioni, staff present cases to a supervisor who provides feedback and suggests new strategies. In passaggi di consegno, the staff from one shift reports to the staff of the next shift how the day has gone, ospite by ospite.

One social/recreational activity group used several tools and strategies to get to know new youth and share information with staff and volunteers. First, there is a meeting with the parents that is used to create an “identity card” – a one-page information sheet for volunteers and staff about each ospite. It is written in first person with a photo in the center and bubbles explaining “Who I am...” “How I communicate...” “What activities I succeed at doing...” “What I like to do...” “What I do not like to do...” and a two-part section on difficulties phrased as “At times it happens that...” and “what to do [about it].”

The Identity Card effectively summarizes each individual so that new volunteers understand how to interact with each ospite respecting his or her unique set of abilities and difficulties. Staff also wrote a summary that was distributed to educatori addressing abilities and difficulties, and also allergies to be aware of when planning snacks.

Life Cycle

In my role as a participant-observer at Day Centers, I had particular difficulty at first understanding the big picture in terms of the goal of the weekly activities. The 210

adolescents and adults who attended the Day Centers worked on specific tasks to improve their cognitive and motor skills or laboratories to improve domestic or professional skills.

Staff talked about vocational training, but admitted that they were hesitant to think many of the youth in their care would ever be able to take jobs, even part time, because they needed so much support. This lack of optimism did not apply to all people on the spectrum and is largely a function of the fact that the Day Centers dedicated to autism were also administratively dedicated to people with higher levels of support needs as determined by the Local Health Boards (see Chapter 2). Nonetheless, I found myself wondering: what is the point? Why do these activities?

The answer came to me one day in an unrelated conversation. During a scheduled stroll outside, staff were reflecting on their relationships with the parents of the people who attended the day center. I casually asked if everyone still lived with their parents, and the staff member told me yes, adding that they will ultimately live “in communità,” meaning a structured residential community and not in their own apartments. The staff member explained that there are two types of communities - residenziale ed assistenziale.

In residenziale they do activities and have a better quality of life. In assistenziale, they do not. The staff worked to avoid that the adults with whom they worked would have to go in assistenziale – tutto il giorno in letto con pantaloni (all day in bed with diapers). The staff member explained: if we can teach them to eat by themselves, to dress themselves, to wash themselves, they can go in residenziale and have a better quality of life.

The work staff were doing at Day Centers, Residential Centers, and

Social/Recreational Groups was consistently focused on a life cycle approach.

Particularly as this study focused on older adolescents and younger adults, issues related 211

to the transition to adulthood played a central role in all activities. Anthropologists classically define adolescence as the “time between puberty and the assumption of full adult roles” (Whiting, Burbank, and Ratner 1994). This definition has been extended through 30 years of research, and in some contexts also includes discussion of another life stage between adolescence and adulthood called “emerging adulthood” (Arnett 2000;

Arnett 2004). What anthropological definitions of adolescence and other life stages contribute most to academic understanding of these life stages is their flexibility. Rather than relying on age-based defintions (e.g, the age of legal majority - 18 in both the U.S. and Italy), anthropological definitions rely on locally determined stage-based definitions

(e.g., activities such as puberty rites, marriage, childbearing, employment, or other locally determined markers). While the anthropological definition allows for a broad range of activities that might constitute a transition to adulthood, the presence of a developmental disability challenges this definition because people with developmental disabilities are often excluded from whatever locally determined activities mark this transition.

One interpretation of this challenge is that people with developmental disabilities never become adults. Certainly there is a problem of the infantilization of people with developmental disabilities – some parents and professionals complained about it – but it did not dominate my field experience. The purpose of this section is to highlight and explicate professionals’ self-aware attention to the life cycle of people with autism.

Staff easily recognized the difference between an infant, child, adolescent, and adult with autism and discussed these life stages as points along a developing continuum

– at times the same and at times different from people without developmental disabilities.

For example, one participant said of small children, “anche i bambini autistici sono 212

bambini” (even the children with autism are children)” who have childlike wonder for the world, even if that wonder is focused on different objects than a child without autism.

Another pointed out that children with autism who do not want to go to school are acting just like children without autism, who generally do not want to go to school either.

During my participant-observation, staff repeatedly noted the particular needs of the adolescence and youth with whom they worked. Staff explained that because they were young, the youth needed to “scaricare energia,” work off their energy. Participants made similar statements for children: that they need to get up and move frequently. Many people also stressed that adolescence is a difficult time for everyone, but especially for adolescents with disabilities. Sexuality becomes an especially prominent issue during adolescence. Peer group relations also become more important, and professionals who worked with social/recreational activity groups stressed the importance of a place where people with developmental disabilities could spend leisure time with their peers just like anyone else.

There were issues specific to adulthood as well. When forming a new self-help group, the organizers stressed the goal to have it be for adults because adolescents are competitive, and because they talk about topics like school and their parents which are less interesting to adults. Adulthood is also associated with responsibility:

We have a whole series of workshops at times […] really to permit the kid to grow, to become and adult, to take responsibility for some chores that are related to his wellbeing because it is important that a kid, adolescent, then an adult, is able to care for himself. - Interview, Educatore

Professionals also criticized others for using childlike materials for adults and stressed age appropriate activities, including age-appropriate books to read, television shows to 213

watch, outings to go on, and decorations for domestic and therapeutic spaces. Once at a presentation to parents of videos from a residential center, a professional pointed out that adults go on outings accompanied, but without hands held because “they aren’t children and they aren’t spouses.” Furthermore, staff at times also motivated the adolescents and adults with whom they worked by pointing out their age and telling them to act a certain way accordingly based on age-related expectations. Once a professional even used me as an example, pointing out that we are age-mates and so I could be a role model. While telling someone to “act your age” can itself be a form of infantilization (it is children who need to be told what to do), I read this admonition as holding youth with autism to life cycle expectations and as evidence that people with autism were not seen as perpetual children or perpetual adolescents, but as developing and transitioning through a full range of life stages with distinct age-based characteristics and intervention needs.

An alternative interpretation to the problem developmental disabilities raises to the anthropological definition of adolescence is therefore that of defining “full adult roles” in the presence of developmental disability. While this goal was not necessarily important to professionals who worked with younger children, those who were working with residential options for people with autism reflected on it quite explicitly. As one participant explains, “Quando il soggetto diventa adulta, secondo me, ha diritto di avere quelle cose che [l’età] adulta prevede: una casa e un lavoro. (When the person becomes an adult, in my opinion, he has the right to have these things that adulthood forecasts: a house and a job).” Similarly, I attended a lecture in which a neuropsychiatrist in the audience stood and stressed: ‘Gli adulti hanno diritti di vievere da adulti. Adulti a loro modo ma comunque adulti. Uscire da casa. L’adulto vive fuori di casa, anche l’adulto 214

malato, a qualisasi livello di sviluppo. (Adults have the right to live as adults. Adults in their own way but nonetheless adults. Going out from the house. An adult lives out of the house [of his or her parents], even a sick adult, at whatever developmental level.)’

Though a discussion of the appropriate use of the world “malato” (sick) to describe someone with autism followed, the point was well-received – people have a right to live in their own space, outside the natal home, at whatever developmental level. Participants saw it as inappropriate both that adults with autism would live with their parents (like children) and that they would go into assisted living communities with elders several decades older than them. These professionals strove to empower people with autism to access full adult roles through a rights-based discourse.

A rights-based perspective – access to adult roles is a right – can inform the anthropological definition of adolescence and adulthood. Adulthood can be seen as an assemblage of roles and materials to which all individuals, as they age chronologically, have a right. The timing of this chronological aging can certainly vary cross-culturally and does not simply fall back on age-based definitions. As one participant was often quick to point out, ‘18 is too young for independence’ even if ‘maybe in the United States they leave home at 18.’ A rights-based approach sees adulthood as a basic set of characteristics to which individuals with disabilities have a right within an age range parallel to that of typically developing peers.

The life cycle approach is also related to intergenerational relations. Professionals referred to the problems of later life for people with autism by a set phrase, “dopo di noi”

(after us) – referring to after parents had aged past the ability to care for their adult children with autism, or had passed on. Parents, as we will see in the next chapter, used 215

this or the similar term “quando non ci saremo più” (when we won’t be here anymore). In attempting to give people with autism opportunities for independent living as young and middle-aged adults, professionals spoke about the need for “distacco” (detachment) from the natal home. This process could even begin at adolescence, a life stage it which one participant noted it was important to begin passing time in peer groups and distancing oneself from the family. The goal of distacco was even more pronounced in residential settings:

This is a place that has the goal of allowing a gradual detachment from the families because, if we’re speaking of adulthood, our guys will not be able to following other goals of those without disabilities to graduate, get married, and, except for two or chases that maybe one day will be able to live in the area near here, most of them will live here because they would be in an institution if [this service] did not exist. Therefore we say that the main goal for the families is to favor a detachment. - Interview, Psychiatrist

This gradual detachment ideally created a greater sense of security for parents to see that their children have established adult lives – independent form the natal home but with support.

Conclusion

This chapter has addressed research question 1, “how is autism conceptualized in

Italy,” through two basic and interrelated questions: “What is autism?” and “How should autism be managed?” In terms of how autism is conceptualized, it shows that professionals saw autism as a constellation of symptoms in line with the DSM-IV, plus behavioral problems, rigidity, sensory and perception problems, and special strengths.

Half saw autism as a qualitatively different way of being in the world. The way professionals defined autism related to how they argued autism should be managed.

Professionals favored treatments and interventions tailored for people with autism based 216

on their characteristics, under various philosophical umbrellas but all favoring structuring the environment to help people with autism learn rather than fitting people with autism into a hostile world.

Three additional findings emerge from professionals’ narratives that further anthropological theory and the anthropology of autism. Firstly, related to conceptualizations of autism, the removal of Asperger’s Syndrome from the DSM-5 may qualify it as a “transient” or “niche” diagnosis as it has been rolled into “autism with need of less intensive support.” It remains to be seen if the term Asperger’s will remain salient outside the medical community, but insights from this fieldwork (which took place during the period in which the DSM-5 was published) suggest that Asperger’s may appropriately be categorized as a “niche” diagnosis (Cascio 2013). Secondly, combing findings on what autism is and how it should be managed, professionals used the language of “rigidity” when talking about both a characteristic of autism and as a criticism of poorly suited intervention programs. This rhetorical overlap may serve to bridge a perceived gap between people with and without autism (Cascio 2015a). Thirdly, relating to how autism should be managed, I argue that a rights-based approach to the life cycle of people with autism can challenge and improve the anthropological definition of adolescence and its conclusion of “full adult roles” by defining adulthood as an amalgamation of materials and roles to which all individuals have a right based on the standard of their peers.

Professionals’ discussions of their work differentiate between children, adolescents, and adults, and stress appropriate materials and rhythms for each life stage (Cascio 2015b).

As the next chapter shows, parents share many of these goals and ideas.

This chapter sets the stage for understanding the professional world with which 217

parents and people with autism interact, while contributing the anthropology of biomedical systems and psychological anthropology with respect to the life cycle.

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Chapter 5: Parents’ Perspectives

Chapter Overview

This chapter presents data on the perspectives and experiences of parents of adolescents and young adults with autism. It draws primarily from parent interviews.

Although I also got to know some parents when they arrived to drop off and pick up their children or at parent assemblies, interviews were my main source of contact with and information from parents. Some parents also had professional or volunteer/advocacy roles within these organizations, and I therefore interacted with these parents on a more regular basis. In 10 of the 38 parent interviews I conducted, one or both parents also served on a professional or volunteer basis in roles related to autism services (within the sites where I conducted fieldwork and in other organizations). Similarly, six of the 31 professionals I interviewed had an immediate family member on the spectrum and two professionals identified traits of autism in themselves. I interviewed each individually primarily for the role (parent or professional) for which they were recruited and I keep them divided in this presentation of the data. The significance of such overlap of roles will be discussed in more detail in Chapter 7 as it relates to new biopolitical theory.

This chapter addresses research questions (1) and (2) – how is autism conceptualized in Italy, and how do people defined as autistici and their families define, manage, and experience ASD. It largely parallels the structure of Chapter 4, with two sections entitle “What is autism?” and “How should autism by managed?”

Section 1, “What is autism?” describes parents’ definitions of autism and the characteristics of their children that they saw as related to autism. It begins by identifying parent reported diagnoses. It then discusses perceptions of the DPS/DGS label and the 219

concept of “pure autism.” It next presents the traits of autism that were important to parents and discusses the related yet distinct ideas of autism as a “different way of being” autism as being in one’s “own world.” This section looks not only at how participants described autism to me, but also how they discussed it with their children with autism. It also presents examples of parents rejecting or contesting the label of autism for their children and discusses the implications of these narratives for how autism is defined and conceptualized. This section finds that parents defined autism in a wide variety of ways, often related to the characteristics of the DSM-IV. When talking to their children, parents often described autism to their children within the framework that all people have a balance of strengths and weaknesses.

Section 2, “How should autism be managed?” describes parents’ interaction with a variety of treatments, interventions, and professionals. This section begins with a discussion of early interventions and ongoing interaction with therapists, luminaries, and in-home approaches. It then moves into the school setting and discusses parents’ interactions with this very important institution during their children’s school years. In both therapy and school settings, parents seek competent, knowledgeable professionals and criticize about those that seem ill-informed about autism. This section concludes by describing parents’ use of a variety of services. It concludes with parents’ hopes for their children’s futures and their search for “un po’ di tranquillità” (a little tranquility) for their adult children and themselves.

Section 1: What is Autism?

Understanding how different actors in the Italian context define autism forms the crux of research question (1) and remains important to the other questions as well. 220

Therefore, I made certain choices in my research design that would allow me to understand what autism meant to research participants. One possibility would have been to verify an autism diagnosis through a diagnostic interview administered through a trained professional either at the time of the study or as verified through review of medical records. Such a methodological move is very important in many medical and psychological studies because it allows different researchers from different backgrounds in different locations to ensure that they are talking about the same thing. However, such a move would have been begging the research question in my case, asking “What is autism?” while stipulating that autism is that which is measured by the chosen diagnostic instrument. It would also verge on a “category fallacy” (Kleinman 1987). My goal was to get an “on the ground” understanding of what autism means in daily life. I therefore identified “people with autism” through staff. All sites were targeted specifically, though not always exclusively, to people on the autism spectrum. Therefore, not all youth who frequented these sites had such a diagnosis (see Chapter 3 for site-by-site details); staff identified to me those who did. This strategy allowed me to learn about the definitions of autism, diagnostic instruments, and daily life observations that were important to staff in making these identifications; and to understand how autism is conceptualized without imposing my own definition.

Parents of these youth were eligible for interviews. They then had to consent to the interview based on their role as parent to a child with an autism spectrum disorder.

Nonetheless, not all parents were in absolute agreement with this diagnosis and some took the interview as an opportunity to explain their disagreement with staff on this issue.

Table 9 lists the categories of diagnoses given by parents when asked in interviews (all 221

parents in this sample had only one child on the spectrum). Not all of the diagnoses on

Table 9 are autism spectrum disorders, for several reasons. Some parents rejected the diagnosis of autism attributed by staff. See the section below on contesting the diagnosis.

In the majority of interviews (N = 24, 63%), participants also discussed previous diagnoses. Some of these diagnostic histories were stories of moving towards a diagnosis of autism (see DPS/DGS below). Others moved away from an autism diagnosis by contesting it. Of the five parents who listed their child’s diagnosis as intellectual disability or another diagnosis without the addition of autism-related qualifiers such as traits of autism, three had a previous diagnosis on the spectrum that they were actively contesting, and two noted that their children had traits that they considered to be autistic, but not part of the specific diagnosis they identified with their child.

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Table 9: Parent-Reported Diagnoses Category of Examples N Diagnosis Autism “autismo” 11 “autistico” Other + Traits of “psicosi con tratti autistici” 6 Autism “epilessia generalizzata e disturbi dello spettro autistico” Autism + Intellectual “sindrome autistica con ritardo mentale” 4* Disability “spettro autistico con insufficienza mentale media” Pervasive “disturbo generalizzato dello sviluppo” 4* Developmental “disturbo pervasivo dello sviluppo” Disorder Asperger “Sindrome di Asperger” 3 “Asperger” Other Diagnosis “disordini delle comunicazione” 3 “cerebrolese” Genetic mutation High Functioning “autismo ad alto funzionamento” 2 Autism “spettro autistico ad alto funzionamento” Intellectual Disability “ritardo mentale” 2 Asperger/High "un autismo ad alto funzionamento barra Asperger. 1 Functioning Autism Borderline.” Traits of Autism “tratti di autismo. Borderline.” 1 Atypical Autism “Autismo Atipico” 1 Autism + Other “spettro autismo più ipercinetico” 1 * One interview listed both of these two diagnoses.

As discussed in Chapter 4, the terms “disturbo pervasivo dello sviluppo” and

“disturbo generalizzato dello sviluppo” refer to the autism spectrum, but index a milder disorder. Professionals acknowledged that some practitioners started with these terms before moving into a more precise definition of autism. For many parents these terms straightforwardly meant autism. As one parent explained about doctors, “facevano fatica a scriverlo” (they have trouble writing it). She identified her son’s diagnosis as autism based on a verbal communication from doctors, but told me she thought the written diagnosis might say disturbo generalizzato dello sviluppo or spettro autistico. One mother described in more detail how she came to make the connection between the terms: 223

There were three meetings a year with the neuropsychiatrist. Each time she told me generalized developmental disorder, but each time intellectual disability. The diagnosis arrived bit by bit. Listening to the mothers at the [parents’] association, I learned that it meant autism. I asked the neuropsychiatrist and she said yes. - Interview, Parent at Day Center, not audio recorded

Two other mothers discussed similar conversations that went a different direction. When asked what her son’s diagnosis of DGS meant to her one mother explained that it meant

“everything and nothing,” elaborating that “there’s everything inside it. It doesn’t have a meaning. Except to say that there is a disorder.” She explained:

In fact, I asked the neuropsychiatrist, “Pardon me, but is he autistic or not?” She told me “no, he’s not autistic because people with autism have a very different behavioral profile in which they do not improve.” That’s what she said. On the other hand [my son] improves. This is what she told me. - Interview, Parent at Social/Recreational Group

With doubts, she began reading about Asperger’s syndrome and identifies her son more with that label than with DGS. Another mother of a child with Asperger’s similarly asked the neuropsychiatrist if DPS meant autism and was told no. Other parents differentiated

DPS from other diagnoses. One mother explained that it meant mild autistic traits, but was not itself a helpful label.

I think that the diagnosis is a little vague and covers so much […] that is to say, it’s not like Down Syndrome that is more… how to say it? More characteristic. You understand it. This on the other hand is a bit… a bit generic. - Interview, Parent at Social/Recreational Group

In these examples, the relationship between DPS/DGS and autism becomes blurry. In fact, the boundaries of autism itself could be blurry. Thirteen (34%) parents made reference to a concept of autismo puro (pure autism) or the similar adjectives vero (true) or classico (classic), using these terms to describe their child (in one case) or as a point of contrast with their child (the other eight times). Some spoke of pure autism as a simply more serious impairment. Others spoke of autism that was not pure as the presence of 224

some traits (such as stereotypical and repetitive behaviors) but distinct absence of others

(such as language delay and being closed or unaffectionate). In two of these interviews, the discussion of pure autism arose while directly contesting the diagnosis. In three other interviews parents talked about pure autism and also contested a diagnosis in other parts of the text. In these examples, parents discussed varying forms of autism not only in a spectrum but also qualitatively – not just more or less autistic but also more or less pure autism.

Taken together, what are these traits and characteristics that parents associated with autism? Table 10 lists in order of frequency those traits of autism that were commonly referenced. It excludes those traits that were raised only by a single participant. It lists characteristics of autism raised by parents in answer to direct questions about the definition and characteristics of autism as well as statements on these topics that emerged in responses to other questions – including discussions of such traits of autism or “pure autism” that their children did not share. In this way we can understand how the concept of autism is understood by parents of youth identified by staff as having autism.

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Table 10: Commonly Referenced Characteristics of Autism (Parents) Characteristic # of Interviews Behavior Problems 13 Sensory and Perception Difficulties 10 Particular Skills, Talents, Intelligences 9 Good Memory 6 Hate Being Touched 5 Attention and Hyperactivity Problems 5 Rigid 3 Imitate Others 2 Lack of Empathy 3 Difficulty with Self-Control 2 Egocentrism 2* * = Only for Asperger’s

Unlike professionals, parents rarely spoke of the “triad” of diagnostic characteristics by that term. Only one parent who was also a medical professional used the world triad, and in only 16 interviews (42%) did parents list all three traits: impairments in social interaction, impairments in communication, and presence of restricted and repetitive behaviors or interests. Nonetheless, the most common characteristics mentioned by parents did fit into these categories. Twenty-four (63%) interviews discussed Stereotypical and Repetitive Behaviors, nine of these in the form of

Routine and Ritual. Thirty-three (87%) talk about social interaction, particularly being

‘isolated,’ ‘closed,’ and ‘in one’s own world’ (25 interviews, 66% of the total). Twenty- five (66%) talked about social communication. It is worth noting that this table only includes traits parents associated with autism per se, not all the traits they associated with their children. More children evidenced differences in social communication, social interaction, and patterns of interest that parents discussed but did not list as traits of autism. Severe behavioral problems, particularly violence and aggression, were also important to some parents’ narratives, although they did not list this trait as a 226

characteristic of autism, just as a general characteristic of their child.

The “different way of being” discourse was also important to parents. Fifteen interviews (39%) included some version of this discourse which described people with autism as having “una visione dell’esterno differente” (a different view of the outside); a

“modo” (way), “modo suo” (own way), or “maniera … tutta sua” (manner all his own) of seeing, relating, understanding, being, perceiving, communicating, functioning, socializing; a “mondo molto particolare” (a very particular world); “un altro mondo reale” (a different real world) “dove tu capisci gli altri, ma gli altri non capiscono te”

(where you [the person with autism] understand others, but the others do not understand you). This invocation of “another world” occurred in these statements either to describe autism as itself another world, or as a condition in which the world of others, built by others, is not hospitable. One mother went so far as to tell me, “per me il fatto che abbia l’autismo è come dire ormai che ha capelli biondi o occhi azzuri, uguale, sullo stesso piano, proprio. È una caratteristica” (for me the fact that she has autism is like saying that she has blond hair and blue eyes, it’s the same, on the same plane, really. It’s a characteristic). This perspective lends itself to a diversity framework. As one parent explains:

In my own words, autism is... it’s not a disease but a way of being […] we should learn from the time we are in preschool that each of us is different from the other, and therefore even people with autism are not to be seen as strange people, but like people different from us. Very different than us, clearly, sure. [….] We need to have respect, you see. Don’t take away the respect that each of us on this earth deserves. In the same way they need [it], they have a right to the same respect. - Interview, Parent at Day Center

However, parents notably invoked this discourse less than professionals, who more commonly included the idea of a different way of being in their definitions. 227

Parents’ use of the “world” metaphor was more commonly used outside of the

“different way of being” discourse. They described “living in one’s own world” (being isolated and closed, a part of difficulties with social interaction) as a characteristic of autism. Many parents explained that autism was, for example, “il fatto di stare lontani dalla realtà, praticamente. Crearsi un mondo proprio e che non è in contatto con l’esterno” (the fact of being far from reality, practically. Creating one’s own world and that is not in contact with the external); “un po’ chiudirsi in un mondo tutto suo” (a little bit closing up into a world entirely yours); “un bambino che vive nel suo mondo che… il mondo esterno non esiste per lui, per lui esiste il suo mondo, di lui” (It’s a child that lives in his own world that... the external world does not exist for him, for him only his own world exists); and having a “mondo chiuso” (closed world). This next section looks at conversations parents have with their children, potentially bridging these worlds, when explaining their autism to them.

Discussing Autism

I asked parents how they described their children’s difficulties or characteristics to their children themselves, if they discussed it all. This subsection considers their responses. An important theme pervades their answers, which is the central message that all people have different strengths and weaknesses and that the characteristics of autism are a part of that common human experience. One parent at a day center explained

“ognuno di noi ha le sue tempistiche” (each of us has their own timetable) to her son when he was frustrated at school and called himself stupid. She encouraged him “no, tu non sei stupido. Ci voule più tempo ma vedrai che riuscirai anche tu” (No, you are not stupid. You need more time but you will see that you will succeed, too). Other parents 228

recounted their children calling themselves derogatory names for mental illness – pazzo and matto, both of which can be glossed as crazy. Both parents resisted these labels. One young woman at a residenti center had been bullied at school, where other children called her “handicappata” (handicapped). Her mother told her, “Non sei handicappata. Fai fatica a fare alcune cose” (You aren’t handicapped. You have trouble doing certain things). Summarizing this theme, one mother explained very clearly:

One thing that I taught [my son], which fortunately he took up very well, I always tell him, “each person has some difficulties. Each person is able to do some things, but is not able to do others. Therefore you aren’t good, let’s say, in math, like some other people who are very talented in it, but you for example have an exceptional visual memory and therefore you will do something really great using this skill of yours, for example.” - Interview, Parent at Social/Recreational Group

In this passage, the parent explains very clearly that different people have different talents. Another parents explains in different words:

We are all a circle, in the sense that in this circle we have all virtues and defects, but we are all a circle. Therefore where there is more than one thing, there is more of another. Therefore, I want to say, you will have some positive characteristics that [your sister] does not have. Therefore each of us has their specificities and their positive parts and each of us has their negativity. - Interview, Parent at Social/Recreational Group

These examples and others show the language parents use to construct and present autism as a balance of skills and difficulties, the same as the balance any individual has. While these two longer quotations come from parents of children at Social/Recreational Groups who have somewhat lower levels of support needs, note that the first two quotations come from parent from a Day Center and a Residential Center, whose children have relatively high levels of support needs. Despite these high levels of support needs, parents still drew on very similar language to describe their balance of strengths and weaknesses.

Parents also talked to their children about specific differences which visibly set 229

them apart from others, such as the presence of support staff at school, services, or absence of a girlfriend. One mother talks to her daughter, who notices the commotion of the school next door to their home. Although her daughter does not talk, she stresses the importance of talking to and with her daughter about these issues:

I tell her, “[daughter], do you see? You cannot go in those schools because you do not speak,” I tell her. And she starts going, “ma-ma-ma-ma,” you know? Because that’s how she is. And well, I tell her, “Would you like to go to that school?” And she tells me, “No.” And… but I tell her, “You see, [my niece] now in September, [my niece] will start elementary school." And I tell her, “She goes where there are children, who do homework, draw, while you won’t manage to do it, but that which you can manage you can do all the same with your mother and at the center where you go.” But I talk, because she listens to you. - Interview, Parent at Day Center

Another mother talked to her son about the athletes he liked to look up pictures of on the internet. She explains how he asked if he can meet the women he sees and that she tells him no, but makes sure to point out that she and his brother could not meet them either.

She explains that she could frame it as a case of “faresti fatica anche conoscere una ragazza fuori giù in strada su marciapiede” (you have trouble even meeting girls down on the street, on the sidewalk) which would be saying, “non hai la capacità di conoscere di avere un rapporto con una ragazza” (you lack the capacity to meet girls, to have a relationship with a girl). Rather, she explains, “Ok tu non poui conoscere però neanch’io posso conoscere quindi non preoccuparti, che va tutto bene lo stesso” (Ok, you can’t meet her but neither can I so don’t worry, it’s fine all the same).

Several parents talked to their children about the support staff they see at school.

One mother whose son also had vision problems explained that she first tried to explain it away as related to his vision, but now when they talk about it she says, “ci sono ragazzi che hanno un po’ più difficoltà e ragazzi che ne hanno meno. Tu hai qualche difficoltà in 230

più” (there are those kids who have a little more difficulty and kids who have less. You have some extra difficulty) She tells him as much without, she explains, getting into the specifics. Other parents explained “Abbiamo detto che è una figura speciale per lui che aveva più bisogno di appronfondire certe cose e quindi l’aiuto era per quello” (We said that it’s a special figure for him, who needs more support to understand certain things and therefore the help was for that) and that “tu hai sostegno poi tu sei un po’ disabile. Hai delle difficoltà rispetto le altre. Hai qualche problema” (you have a support so you have a bit of a disability. You have some difficulties compared to the others. You have some problem).

These examples show that when parents talk to their children about their difficulties, they are able to normalize them as a part of a universalized human condition

– we all have difficulties, some more than others, some different than others.

Two parents discussed resolving these difficulties together. The occasional parent re-framed it as a problem that they, as parents, have in understanding their children. One parent explained in detail:

Well, there was a moment some years ago in which he realized it. I knew because he often cried, he was distressed. He became aware, a bit, of his problems. And well, that is, I told him about it in the same way. It’s not that I lingered on giving an explanation to [my son]. I said, “[son], you are an autistic person, and therefore you have a type of communication different that the one that your mother has, and your mother wants to seek to understand you in order to be able to help you because otherwise it is very difficult to help you.” And still today. He, we lingered a moment at the explanation. I say, “you must help me to understand you otherwise I can’t do anything because I am less intelligent than you are.” - Interview, Parent at Day Center

Putting the onus of communication and comprehension on the parent moved beyond identifying difficulty as a common experience. It framed the difficulty as one of difference, even valorizing the child’s perspective over the parent’s. It therefore provides 231

further evidence of the central point of this section, that parents’ discussions of disability with their children minimized a deficit narrative, even among those parenting young people with higher levels of support needs who attended highly staffed day and residential centers. Both reading autism as a way of being and explaining autism in a non- deficit-focused way allude to neurodiversity discourses and the idea of autism as an identity. These discourses will be discussed more in Chapter 7, which discusses their relevance in new biopolitical theory.

Contesting the Diagnosis

Parents in ten interviews (26%) in this sample expressed doubts about their child’s diagnosis or outright contested it. These challenges took three distinct and different forms: doubting the validity of the diagnosis of autism or Asperger’s at all, pointing instead to another genre of problem entirely; challenging the specific diagnosis

(e.g. DPS/DGS) in favor of another (e.g., Asperger’s); and doubting the validity of an autism diagnosis at first then changing their mind. In addition to revealing in more detail how autism was conceptualized (research question 1), these rather common instances illustrate points of conflict between professionals and parents on this very topic and also demonstrate how parents come to know what they know about autism and mobilize that knowledge with respect to their children.

The discussion above has touched upon the first challenge to the diagnosis, in the theme of “pure autism.” Parents in five interviews challenged the appropriateness of an autism diagnosis. One mother argued that the diagnosis was no longer appropriate for her daughter because she had overcome it; one couple doubted the sticking power of the diagnosis because their son’s diagnosis changed so frequently; and the other three argued 232

their respective children’s problems were not autism because they were due instead to an identifiable physical problem.

These first two cases are similar in that they both doubt the validity of the autism or Asperger’s diagnosis while acknowledging a difference and valuing the way the label opened doors to Social/Recreational Groups that their children attend. They show how unimportant the diagnosis can be for parents. In their two very different approaches – actively seeking to change the diagnosis, and accepting that diagnoses will change – the label was not meaningful. Nonetheless, for each youth the service was important.

The other three parents/couples in this category questioned the diagnosis because they linked their children’s problems instead to discretely identifiable physical problems: one due to brain damage, one to birth injury, and one to a genetic mutation. Another mother similarly doubted the diagnosis of autism due to physical health considerations.

Her son, in his mid-teens, had recently undergone a genetic analysis that uncovered a rare genetic mutation. Although he had had an autism spectrum diagnosis as a young child, his mother now explained that the genetic mutation was the more correct diagnosis.

These examples show that physical health issues and other identifiable problems can be more important to parents than the autism diagnosis. Indeed, some parents who were approached to participate in this study declined because they did not see their children as having autism, even though professionals identified them as having autism. However, three parents pointed to both identifiable physical issues (brain damage, genetic illness) and autism, seeing the autism as secondary to it but still very important (see Table 11, below).

Three parents contested not the validity of autism per se, but the specific 233

diagnosis within the autism spectrum. Above we met the mother who explained that DGS means “everything and nothing.” This interviewee was the mother of one of the youngest children whose parents participated in this interview. Her son was 14 and had just started attending a Social/Recreational Group at the suggestion of a school principal. She found the youth with Asperger’s in the social/recreational activity group to be very similar to her son, and she found him to be comfortable and happy in the environment. Yet his diagnosis was disturbo generalizzato dello sviluppo. This mother explains:

She [the neuropsychiatrist] knows more than I do, so I defer. But I understood because reading… here and there, I understood that autism isn’t just one situation, that is it’s not, um, there are many types of autism. There are various gradations. And [my son] does not have a severe autism. He has a medium autism. That I do not know if you can call it Asperger’s or not. This I do not know. - Interview, Parent at Social/Recreational Activity Group

She then described how she had been reading books about Asperger’s and recognized her son in their descriptions. She also took a test in such a book which suggested he may well have Asperger’s. She prefers to use the term Asperger’s to talk about her son, but acknowledges that she has no professional confirmation. She spoke highly of one professional who seems to agree with her. While DGS meant nothing to her, Asperger’s resonated better. She nonetheless also defers to professional experience, making several comments to that effect throughout the interview. In everyday life, Asperger’s is personally meaningful, it is the term she prefers to use.

Another mother went the opposite direction, pushing away from the term

Asperger’s in favor of “high functioning autism” or “borderline.” She explains her experiences with the online Asperger’s community in Italy:

Then I distanced myself a bit because I started to read “my son will go to a scientific liceo, my son will go to a classical liceo, my son will go...” and I was like “maybe [my son] is not so Asperger after all!” (Laughs). “I can’t send him to 234

liceo, no?” I felt a bit like a fish out of water reading these forums where they talked about Asperger […] [my son] has Asperger’s in certain traits. But for certain [traits] de doesn’t, in the sense that, how can I say it, a person with Asperger’s Syndrome is a kid that can go to liceo, and mine cannot go to liceo. - Interview, Parent at Social/Recreational Group

Another mother went back and forth between Asperger’s and spettro autistico.

Although some doctors had written or verbalized a diagnosis of Asperger’s syndrome, she explained at the beginning of the interview that he had a diagnosis “di Asperger.

Spettro autistico più che Asperger, se voule, più spettro autistico ad alto funzionamento che proprio Asperger perché [...] questi test che fanno per vedere se uno ha sindrome di asperger o no, lui non era pieno” (of Asperger’s. The autism spectrum more then

Asperger’s, if you want, more high functioning autism spectrum than really Asperger’s because [...] these tests that they do to see if someone has Asperger’s syndrome or not, he wasn’t full [of those criteria].” She wondered, however, if he did the tests too quickly or represented his own characteristics differently than she would have described them herself.

Two parents contested the diagnosis at some points in the interview, but hedged at others. Both of these parents contrast their child with another specific child with autism, but then hedge by noting that not all people with autism are the same. For one of these families, this story was one of gradual acceptance. One mother explained that she was doubtful when she first heard the diagnosis of autism, “Perchè ripeto una pensa alla persona autistica come quella che non parla in assoluto. E noi dicevamo “nostra figlia parla.” Sempre abbiamo visti altri ragazzi [...] con movimenti sempre repetitivi, manuali, gesti di chiusura” (Because like I said, you think of a person with autism as someone who absolutely does not talk. And we said “our daughter talks.” We’d always seen other 235

kids […] with repetitive hand movements, gestures of closing off). She went on to explain that her daughter, though repetitive in some things, also collaborates with others when she wants. Mother and father discussed how perhaps more characteristics of autism emerged with age. Their daughter had previously gone to a day center that was not autism specific. This experience did not go well and they had to find another service. As the mother explains, “diventava un’esigenza inquadrarla,” (it became necessary to categorize her). Furthermore, “abbiamo capito anche noi che nello spettro ci sono gli autistici non sono tutti nello stesso modo, che in 50% parlano in 50 no” (we also understood that in the spectrum there are people with autism that are not all the same way, that in 50% [of cases] they speak, in 50(%) no). This mother described an important meeting with the person in charge of this autism-specific service:

We had some doubt then when [my daughter] came here, after the first while, we even spoke with doctor [last name], we said “but listen, do you agree with the diagnosis, could there be something else?” He told me, “no, no, I agree, fully.” There you go. And therefore this… it’s not that it calmed us (but) in the sense that the problem is like this but at least you say “go in this direction, go.” -Interview, Parent at Residential Center

As was the case with some of the parents who rejected diagnosis above, having a diagnosis still served a purpose in identifying services. The parents in this interview expressed a lot of doubt about their daughter’s diagnosis, doubt that may not be fully resolved. However, having the diagnosis gave them a direction to head when general disability services were not a good fit for their daughter.

In situations in which parents contest the diagnosis provided by professionals, the differences between professional and parent understandings of particular youth emerge most clearly. These themes point to promising directions for future research, which could fruitfully compare parent reports with practitioner reports with certificates of invalidity 236

with organizational coordinator reports and even with youth reports (discussed in Chapter

6). Such a study would provide insight into the popularity and desirability of an autism diagnosis. Who is more likely to attribute autism, parent, physician, or other autism professional? A systematic comparison is of course beyond the scope of this study, which did not investigate medical files – but such as a study that did would be interesting because it would reveal how different actors bring different understandings to the table. It would also show how much of the medical terminology parents found useful.

Autism, Asperger’s Syndrome, and Intellectual Disability

As can be seen in Table 9, several parents included intellectual disability as part of their child’s diagnosis when asked. Several others mentioned intellectual disability as among their child’s challenges, implicitly including it under the umbrella of autism. This equating was rarely challenged. However, there were exceptions:

I always say that they don’t have an intellectual disability, they have a different learning style than what they are given, than what is around them, but they do not have an intellectual disability because I take note of the fact that [my son] is able to do, to think, and to put into action some strategies to reach his own objective that we do not even manage to think of [….] He is much cleverer than us. And so I cannot think that a person like this has an intellectual disability. - Interview

They told me that he probably has an intellectual disability. But he managed to cause so much trouble when he was with us. If autism carries with it such a series intellectual disability, why is he so alert, so ready to escape, to take his brother’s things? He’s clever [….] The strange thing that we did not manage to understand when the psychologist said intellectual disability [is that] he’s much more alert than my older son [….] We could not understand why he is so intelligent about making trouble but did not want to talk, did not follow what the others were doing [….] He didn’t talk. At school with the others he did not draw, did not differentiate colors. They told for this reason that this is an intellectual disability. - Interview, Parent at Day Center, not audio recorded

This discourse provided space for autism as a different way of thinking, learning, and/or perceiving that was not necessarily deficient and might be superior. Note in both of the 237

above quotations the use of the adjective furbo (clever). The concept of furbezza has been noted by anthropologist as very important in the Italian vocabulary, meaning clever but

“always with the connotation of craftiness” (Galt 1974:195). Despite its noted importance in the older anthropological literature, the term was of central importance neither to research participants nor to my daily life experiences in the field. One other parent described her daughter as “furba,” but with an intellectual disability. However, it was very relevant when contesting the association between autism and intellectual disability.

Staff occasionally interpreted the behavior of people with autism they worked with as furbo as well. Two incidents in my fieldnotes draw on this term, both times describing efforts of the people with autism to break the rules. It may be that the concept of furba provided participates a lens to identify positive intellectual traits in people with autism, even those who had low recorded IQs and high levels of support needs.

Asperger’s syndrome was often associated with intelligence. The mothers above who contested diagnoses allude to this, doubting their children’s Asperger’s because of their lack of higher IQs. Intelligence remains an important hallmark of Asperger’s syndrome for parents, as for professionals. Particular skills or intelligences were a commonly mentioned characteristic of autism (Table 10). However, in four of these interviews, this characteristic is raised as part of contesting the diagnosis of Asperger’s due to their child’s lack of above-average IQ, or contrasting their children with what they have seen in film or read in books. However, some parents identified their child had

Asperger’s and intellectual disability, so the association is not absolute.

What Causes Autism

I also asked parents what they thought caused autism. Some parents answered 238

only for their specific child and others for both their own child and others with autism.

Table 11 breaks down these causes. Many of the categories are more specific than those given by professionals, which is not to say they cannot be subsumed under them but professionals often used the language of “organic,” “biological,” or “genetic” whereas parents pointed to more specific causes within these categories such as birth/pregnancy complications or specific genetic disorders. Moreover, parents were often extremely tentative. Nine of those who stated that they did not know what causes autism also provided speculative answers which are also included in the table. I have therefore included a “Maybe” category. Please note that this table also excludes three parents who contested the diagnosis of autism because of an identifiable physical cause that negated it.

Those parents, as discussed above, attributed their child’s problems not to autism, but to another illness or identifiable disorder.

239

Table 11: Possible Causes of Autism (Parents) Cause Yes Maybe No I Don’t Know 15 0 0 Vaccines40 7 3 3 Neurological 6 2 0 Pregnancy/Birth Complications 4 2 1 Secondary to another Illness/Disorder 3 2 1 Genetic Predisposition + Environmental 3 1 0 (Physical or Social) Fetal Development 2 5 0 Genetics – Hereditary 2 1 1 Genetics – General 2 2 1 Biological or Organic 2 0 0 Injury 1 2 0 Social Causes 1 2 0 Virus 0 1 0 Toxic Metals 0 0 1 Mother’s Age 0 0 2 Refrigerator Mother 0 0 6

In short, the aggregated group had little consensus, with many parents responding that they did not know. Many parents pointed to specific organic/biological events such as vaccines, birth/pregnancy complications, injuries, or other specific disorders/illnesses.

Few parents invoked social causes as the origin of their child’s autism. However, three parents did explain a social mechanism in which an original problem (e.g. epilepsy) causes social isolation, perhaps keeping the child home from school a lot, which causes or aggravates problems of autism in terms of social interaction and social communication difficulties.

Section 2: How should autism be managed?

This section answers research question (2), specifically focusing on the treatment and management of autism. It is organized vaguely chronologically in terms of the

40 A full discussion of vaccine causation theories is beyond the scope of this research. For more targeted social science investigations into vaccine causation theories and autism in the United States, see S.R. Kaufman (2010) and Silverman (2012). 240

services it discusses. As described in Chapter 2, public and private therapists such as logopediste and psicomotriciste were most often visited during the pre-school and early schooling phases. The first subsection therefore discusses these therapies and interventions. From an early age, schools are a very important part of the lives of all

Italian children, including children with disabilities. The next subsection therefore addresses parents’ perspectives on their children’s scholastic experiences. The third subsection then moves into the day, residential, and social/recreational services parents accessed, often after and sometimes during the scholastic career. The central points of this section are two important goals that pervade parents’ narratives: the search for competent experts, and the search for “un po’ di tranquillità” (a little peace), as it was phrased by one interview participant, for the present and future of their children and themselves.

Therapies and Interventions

Table 12: Approaches Approach Name References in Support Integrate Reject Interviews and or Modify Fieldnotes Medication 34 18 1 15 Psicomotricità 24 18 1 4 Logopedia 15 7 1 7 Horse Therapy 14 10 0 4 Music Therapy 14 10 0 4 Psychotherapy 14 6 0 8 TEACCH 11 5 4 2 Diet 10 5 0 5 Water-Based Therapies 7 6 0 1 Doman-Delacato 6 6 0 0 Psychological Therapies/Visits 6 5 0 1 Physical Therapy 6 4 0 2 Applied Behavior Analysis 6 2 1 3 Facilitated Communication 5 5 0 0 Supplements 5 5 0 0 241

Approach Name References in Support Integrate Reject Interviews and or Modify Fieldnotes Comportamentale 5 2 1 2 Pet Therapy 4 2 0 2 Theater as Therapy 3 3 0 0 Feuerstein 341 3 0 0 Sport Therapy 3 3 0 0 Defeat Autism Now! 3 2 0 1 Dolphin Therapy 3 2 0 1 (Psico)educativo 3 1 1 1 Psychoanalysis 3 0 0 3 Cognitivo-Comportamentale 2 2 0 0 Cognitivo 2 2 0 0 Art Therapy 2 1 0 1 Alternative and Augmentative 2 1 0 1 Communication Portage Method42 2 0 0 2 Vagal Stimulator 1 1 0 0 Emotion Recognition Software 1 1 0 0 Eurythmy 1 1 0 0 Desensibilizzazione Uditiva 1 1 0 0 Holding 1 0 0 1 Occupational Therapy 1 0 0 1 Hyperbaric Chamber 1 0 0 1

Table 12 presents parents’ evaluations of therapies and interventions they encountered, including therapies used for epilepsy which parents may or may not understand as part of autism. It also includes the evaluations of those parents who contested the diagnosis of autism, because they still encountered the same or similar suggestions from professionals and, as we will see below, professionals’ recommendations were extremely important. I list therapies as rejected if parents reported that they did not try them, and specifically mentioned deciding not to do so or being

41 One parent also references positive experiences with a psychologist who used the method of “Feuerbach.” Not finding anything related to developmental psychology by this name, I wonder if it is not also Feuerstein. 42 Cameron (1997) and Shearer and Shearer (1972) 242

advised against doing so as the therapy was not appropriate for their specific child. Some parents spoke highly of professionals that provided these services even if they ultimately did not provide them to their children – in fact specifically praising professionals who were honest with parents if their therapy would be a bad fit. I also mark as rejected therapies that they had negative experiences with when they did try them. I marked as supported interventions if parents tried them and had good or decent results, and also if they wished they had been able to try them but the therapies were not available at the time (i.e., ABA and TEACCH decades ago). Because parents often took an “all of the above” approach to therapies and interventions, I classified as “integrate or modify” only those comments that explicitly stated that the given therapy is good only in combination or only when modified, for example, “Poi sicuramente farmaci contano ma contano sicuramente tutto quello che è l‘ambiente, contesto, secondo noi” (Surely the medications count, but surely all that which is the environment, the context, counts in our opinion).

Recall from Chapter 2 that children with disabilities are served by the field of neuropsychiatry, and it is often a neuropsychiatry office that initially directs parents to services. For autism, these services are traditionally (neuro)psicomotricità and logopedia, as discussed in Chapter 4. Indeed, these two therapies are towards the top of the list of most commonly discussed therapies, in addition to psychotherapy and medication.

Neuropsychiatrists might also refer parents to specialized centers or other practitioners who provided other therapies. There were also services that parents sought out themselves, including private practitioners of psicomotricità and logopedia, private psychologists or psychotherapists, privately hired educatori, or privately run services 243

such as residential services or activities such as horse therapy.

In all of these types of encounters, parents discussed their search for competent, trained experts who would address their child’s needs. When complementing professionals they had encountered, parents used terms in gamba (‘on the ball,’ lit. in leg), valido (valid), and preparato (prepared) in addition to the generally positive bene

(well, good) and brava (expert, good). There were also complements not linked to competence, including affettuosa (affectionate). When describing negative experiences, parents used terms such as incapace (incompetent), inadeguato or non adeguato

(inadequate), non competente (incompetent), inesperto (not expert), and non informato

(uninformed). Parents also complained of certain professionals as only looking for money, that vendono (sell) therapies, rubano soldi (steal money), sometimes to the extent of calling them ladri (thieves). Parents did at times quit certain therapies or professionals who they found to be incompetent, purely profit-motivated, or negligent. A small number of parents also reported filing denuncie (formal complaints) against services and professionals.

There were certain therapies that were especially hot topics for parents, including medications, psychotherapy/psychoanalysis, logopedia, and dietary interventions. The following several paragraphs address these interventions in turn.

Medication was by far the most commonly referenced treatment by parents.

Commonly prescribed medications included seizure medication; antipsychotics and antidepressants; and benzodiazepines. While the majority of parents accepted these medications, especially those for epilepsy, there was also a large minority (15 interviews) who expressed significant discomfort with medication. Even some parents who 244

ultimately accepted medication explained that they were initially hesitant. For example, one mother told me, “Guardi, io era contraria ai farmaci. Non avrei voluto dare nessun farmaco a [filgio]. Poi però quando ho visto i risultati, quando ho visto per [figlio] effettivamente era più tranquillo, era più controllato, ho cominciato ad apprezzare i farmaci” (Look, I was against medication. I would never have wanted to give a medication to [my son]. But then when I saw the results, when I saw for [my son] was effectively calmer, was more controlled, I began to appreciate the medications). The following discussion unpacks parents’ more negative experiences.

Some parents outright questioned the necessity of the drugs their children used.

Regarding a medication against aggression, one parent explained, “Adesso effettivamente non sappiamo se serve ancora. Aspettiamo che ci dicono perché forse non c’è neanche più bisogno, non so” (now we really do not know if he still needs it. We are waiting for them to tell us because maybe there is not even any more need, I do not know). Another couple explained that medication was only a poor substitute for “entrare nel suo mondo”

(entering into her world), that medication “non cura niente” (does not cure anything) and that “più che essere gestita dai farmaci” (rather than having her managed by medications) it is important to “entrare in comunicazione con lei, capire le sue difficoltà, le sue esigenze […] suo modo di vivere, insomma” (enter into communication with her, understand her troubles, her needs […] her mode of living, in short). Parents also stressed the importance of not having been prescribed medication, as the mother who explained,

“Io spero di non aver mai bisogno di farmaci per [figlio] perché trovi anche dei specialisti che ti dicono ‘sì suo figlio così, prenda farmaco’” (I hope I never need medication for [my son] because you find even specialists that tell you ‘yes your son is 245

like this, take medication.’). However, for some this was a better safe than sorry situation.

One couple explained that their son started taking anti-seizure medications as a young child, and the dose has been gradually lowered. They explained that they wonder if it is still necessary, but are perfectly willing to let him keep taking it because they are so scared of a repeat of the seizures, which caused him to faint and sometimes get injured.

While the parents quoted above continued with the prescribed medication or lack therefore, others left services or specific professionals as a result of suggested medication. One mother complained of a psychiatrist who, without even knowing her child, prescribed a medication that this woman’s family practitioner later told her was outdated and inappropriate. Another left a service after an incident in which the neuropsychiatrist reacted by suggesting medication and the mother decided instead to find another service. One couple talks about the decision to leave one Day Center:

One day the director called us in, and told that we must give medications to [our son] because otherwise he is too agitated, et cetera. We told her, “no, we will not give him medication, because his doctor does not consider it appropriate to give him medication. You need to find a way to intervene in [our son’s] behaviors.” - Interview, Parents at Day Center

The Day Center insisted on medication, and so the family left.

Along with this general discomfort with medication came an interest in reducing or eliminating entirely the dosage. One father proudly explained, “Lei aveva anche crisi epilettiche a quel periodo, prendeva anche dei farmaci. Poi piano piano anche con un certo tipo di lavoro siamo riusciti anche a togliere i farmaci a [figlia] e da quanto era ragazzina fino a una certa età non ha più avuto crisi” (She also had epileptic seizures then, she was even taking medications. Then ever so slowly with a certain type of work we managed to even eliminate [my daughter’s] medications and from the time she was a 246

young girl up until a certain age she did not have any more seizures). This decision was made in conjunction with the physician. In other cases, this interest became a quest and a real struggle against professionals. One couple described a struggle they were undertaking to return their adult child’s dose to its previous level. Another parent did decide to stop medication entirely without first consulting her doctor. She tried giving her son a medication prescribed for hyperactivity, but she found it just made things worse.

One day shortly after starting the medication, she decided not to give it to him anymore.

This story demonstrates that parents did sometimes take matters into their own hands.

Most, however, did not. When I asked parents who opposed medication why they used it anyway, they consistently explained that they were told to, e.g., “sono stata consigliata”

(I was advised). One parent went so far as to tell me, “Devi accetare quello che dicono anche che sia sbagliato” (you must accept what they say even if it is wrong). This statement demonstrates parents’ reliance on expert professionals and willingness to follow their indications even when they would rather not.

While medication was controversial in the parent sample – some supporting its use, others rejecting it, and many experiencing tension and discomfort – psychotherapy, especially psychoanalysis, was more consistently rejected by parents. Although a minority of parents found it useful (one of whom had a non-verbal son, the others verbal), many spoke out against it. Their complaints included that their children were too young, too nonverbal, or too affected by intellectual disability for this highly verbal, reflective therapy.

General complaints held that it was just not applicable for someone with autism.

One mother described a Jungian analysis, telling me, “è andato che… un’esperienza 247

frustrante [....] Perché era una cosa… che non aveva nessun senso. Io non ne capisco niente, non mi rendevo conto che non aveva nessun senso quello che stava facendo. Cioè, portare in analisi una bambina di due anni… non ha alcun senso. (It was… a frustrating experience [….] Because it was something… that didn’t make any sense. I do not understand it at all. I did not realize that it did not make sense what she was doing. I mean, taking a two year old into analysis… it does not make any sense). She further explained, “E già si sapeva che l’analisi non serviva a niente, perché non c’entrava niente la mamma-frigorifero, che i problemi erano di altro tipo” (And already it was known that analysis doesn’t help anything, because the refrigerator mother does not have anything to do with it, that these problems are of another kind). As another parent explained, it would be better to have a psychopedagogical and pragmatic therapy: “quindi non fare analisi, non fare ma… seguire dei criteri pedagogici per risolvere i suoi disordini, chiamiamoli, sociali” (so do not do analysis, do not do that but… follow pedagogical criteria to resolve his, let us call them, social deficits). Unlike with medication, parents who did not find psychotherapy useful were often able to quit it. Like with medication, several parents said they used psychotherapy because they were advised, e.g., “Perché mi l’hanno detta, per me quella che mi l’ha consigliata era un autorità” (because they told me to, for me it was that an authority advised me).

Experiences with logopedia were particularly split among parents, for somewhat similar reasons. Parents occasionally found it not useful for children who did not speak, and much more commonly not applicable for children on the other end of the spectrum, who had a strong command of verbal communication. For those in the middle, the therapy was often very useful. Some parents whose children did not need help with 248

language skills per se reported that they saw other benefits from logopedia, including additional help in school subjects and strong relationships with the therapist.

Finally, dietary interventions were particularly contested. Some parents considered it and found it not applicable for their children. One couple did perform tests for intolerances and follow the diet, but saw it only as helpful for physical health. Others, however, reported great success with dietary interventions related to removing ingredients to which children were intolerant (most commonly lactose/casein and gluten).

Four parents described their experiences consulting with specialists and developing diet plans. One parent who followed the DAN! Protocol even considered her child to no longer be diagnosable with autism, and was seeking to have the diagnosis removed (as discussed above).

Dietary interventions often required a lot of parent-directed intervention in the home, guided by professional experts so important they bordered on luminaries. While certainly there were local luminaries parents turned to who were involved in the services included in this study, there were also traveling luminaries who pioneered specific approaches. Parents consulted local luminaries to learn educational strategies to use at home. One father detailed in his interview the close collaboration he had with a doctor as they gathered and supervised a large group of volunteer therapists to work collectively with his child. Traveling luminaries headed programs like DAN!, the Doman-Delacato method, and the Feuerstein method. Parents would see these luminaries when they were near the city, or would travel in order to visit them and get guidance. The next few paragraphs look at these interventions in turn.

As discussed in Chapter 4, the most prominent interventions advocated by 249

professionals in the area were TEACCH and ABA. Many autism-specific services for individuals of all ages used these strategies within their centers. Some parents consulted with professionals on a one-on-one basis to learn educational strategies to use at home, derived from TEACCH, ABA, Behavioral and Cognitive-Behavioral Therapies, and more. For example, one mother at a day center explained, “loro sono sempre stati tutti disponibili per... aiutarci, o per suggerci dei metodi uh... per esempio ecco quando abbiamo fatto l’analisi del sangue quindi loro hanno fatto tutta una preparazione con

[figlio]” (They were always available to... help us, or to suggestion some methods to us, uh... for example when we had to do a blood test so they did a whole preparation with

[my son],” getting him ready for this new experience. Two parents (both of whom are describing the same local expert) explain these strategies in detail:

Here they also give us so many practical suggestions, at this place. For example, they showed us even at the day center. I know that, let’s say it like this, having used the TEACCH method therefore everything made with very schematic plans, plans against the wall. Uh or all the visual imagines that for [my daughter] have worked well because even if you say the things 10 times, you try to reassure her about what will come next, about what will come after that. But verbally it does not work. When we saw both in the day center and outside of the [residential] community her panel with her photo, with all the visual steps, with the removal of this thing. We said to ourselves, “but wow, one thing like this is enough maybe to help [our daughter] at school, to help us at home, to give her reference for the passing of time, for the steps, for the things she does, visual, and not, let’s say, always verbalizing them.” - Interview, Parent at Residential Center

It was also a help for us because the psychologist came to our house, saw come we behave with [our son], therefore made a whole diagnosis on the base of our behavior, gave us also indications on how to intervene with those problem behaviors that emerged [....] for example, sometimes he suggested that we ignore, i.e., not continue to say “let it be, let it be” but to ignore the behavior in such a way that sooner or later this behavior at any rate is eliminated. - Interview, Parent at Residential Center

Another couple talks about learning to use visual communication strategies at home, but 250

also learning that they really cannot organize their home as well as at the residence their son attends, in which he is more comfortable. Although by no means all parents used these “mainstream” staff and professionals to advise them how to work with their children at home, there were those that did and that found it extremely helpful.

Three relatively common methods parents used at home in consultation with traveling or international experts were DAN!, Feuerstein, and Doman-Delacato. The

DAN! or Defeat Autism Now! Protocol originated in the United States and has been much studied by social scientists in that context (Eyal et al. 2010; Silverman 2012). In the

United States, the term DAN! is no longer used, but in Italy it is still in circulation. DAN! supporters view autism as a biochemical problem originated in gut enzymes, allergies, intolerances, and gastrointestinal problems (McCandless 2009). The appropriate treatment for autism is therefore a diet that eschews foods that aggravate these intolerances as well as dietary supplements and perhaps chelation. The one parent interviewed who supported the DAN! protocol explained how she was looking online and heard about DAN! and got in contact with a doctor, a former neuropsychiatrist who, upon having a daughter with autism, went to US to learn about DAN and now travels Italy seeing patients with autism. Although only one parent used the term DAN!, four other parents followed similar diets and had to similarly consult with specialists who perform allergy tests and the like. The Feuerstein method refers to an educational strategy pioneered by Dr. Reuven Feuerstein in Israel for children with learning difficulties (The

Feuerstein Institute 2014). One mother interviewed used the strategies at home to teach her child cursive, mathematics, and English. Another mother took her son to Israel to meet with Dr. Feuerstein for “full immersion” to work on fine motor skills and the like. 251

The Doman-Delacato method, also known individually as Doman and Delacato Methods, similarly refer to therapies pioneered by professionals of that name – U.S. physical therapist Glenn Doman and psychologist Carl Delacato. Their program, headquartered at the Institutes for the Achievement of Human Potential in Philadelphia, was originally developed to help children with brain injuries and their website explains that autism is one of the many common labels for “brain-injured children” (Institutes for the

Achievement of Human Potential 2014) Their interventions involve a series of exercises that parents perform at home. Parents consulted with trained physicians and even

Delacato himself for guidance in these exercises, then performed them at home by themselves or with the help of others such as a teacher.

These at-home experiences are further evidence of parents’ ongoing search for expertise. In these cases, parents not only follow professional experts but become trained as paraprofessional therapists themselves. All of the above three therapies are often contested by professional associations, and are not recommended by the Italian autism treatment guidelines (Sistema Nazionale per le Linee Guida-Istituto Superiore di Sanità

2011). Nonetheless, a minority of parents spoke favorably of them (see Table 12) and a subset of those found them very useful. A few acknowledged criticism from other doctors. One mother frequently contrasted her experiences with specialists who dealt with the dietary, Doman, and Delacato methods with her experiences with “medici normali”

(normal doctors).Whether following “normal” doctors or these specialists, parents were actively seeking expertise to guide them through their child’s development. Parents learned about interventions – both recommended and not recommended by the guidelines

– through doctors, friends, conferences, listservs, websites, and the like. 252

Parents who changed their home environment or became paraprofessionals and therapists themselves went against the slogan (Zapella 2010:15) “i genitori devono fare i genitori” (parents must be parents/act only as parents).43 This sentiment was indeed expressed by some parents. One mother told me about a conference she had attended in which a man who had lived in New Zealand explained their (in her opinion) exceptional system. She recounted, “ha detto che prendono in carico dal momento in cui nasce il bambino, ‘io facevo solo il papà’” (he said that they take the child into care from the moment he is born, ‘I act only as the father’). Some parents talked about the importance of having an external figure, sometimes in order to maintain family relationships (going to a therapist can be unpleasant; being with family should be pleasant) and sometimes because of family relationships, as in the case of one family who explained that children have an “arma psicologica” (psychological weapon) with which to “blackmail” parents into giving them what they want. Even a mother who was also a medical professional explained her desire to keep these roles separate when working with the schools:

Even if in the end I always prepared the tools myself, I wanted to keep separate the role of doctor and the role of mother. Therefore I was preparing all the materials and I was passing them to the neuropsychiatrist and I wanted it to be she who interfaced with the teachers. - Interview, Parent at Social/Recreational Group

She told me that the teachers of course knew that she was the source of the materials, but that she wanted to respect the order of things. “Io sono convinta che è stato molto importante anche il rispetto degli ruoli in cui una mamma comunque anche se medico faccia la mamma ci sia neuropsichiatra competente” (I am convinced that it is also very

43 The phrase does not translate smoothly into English, as the verb “fare” indicates not “to be” but “to make” or “to do.” The phrase therefore indicates more accurately “parents must do parents” in the sense of Rocko’s hit song, “Umma do me” which states “you just do you, and umma [I’m going to] do me.” 253

important to respect roles, in which a mother, even one who is also a doctor, acts as mother when there is a competent neuropsychiatrist), she explained.

Parents also chose to pursue various therapeutic programs based around

“recreations” such as music, art, sports, and animals. Some parents explained that they pursued these therapies because, as one parent told me for Art Therapy, “ci ha consigliato” (they advised us to). Others made clear a distinction between these therapies and the interventions such as psicomotricità and logopedia. One mother explained, “la musicaterapia è stata sempre diciamo un hobby, che attraverso un hobby, una cosa che gli piace [....] poteva essere un modo di sbloccarlo” (Music therapy was always, let’s say, a “hobby,” that through a “hobby,” something that he likes [....] it could be a way to unblock him). Another mother explained, “La musicaterapia, anche lì, non la prendiamo come una terapia, come la psicomotricità o come la cosa me come un po’ l’ippoterapia nel senso che abbiamo scelto noi da farla con uno psicologo che conosco, ed è un... ogni

15 giorni, quindi non è una terapia. È un momento piacevole per [figlio]” (The music therapy, also there, I did not take it as therapy, like the psicomotricità or like that but a little like Horse Therapy in the sense that we chose ourselves to do it with a psychologist that I know, and it was a… every 15 days, so it was not a therapy. It was a pleasant moment for [my son]). This mother further explains the difference between music and horse therapy and the interventions of psicomotricità, logopedia, and physical therapy, saying “sono terapie non che scelgo io ma che mi fanno fare quindi lì mi aspetto dei risultati” (these are therapies that I did not choose myself but that the made me do therefore in that case I expect results). In this mother’s explanation, it almost seems that parents’ choice negates the therapeutic nature of the intervention. Therapies are things 254

that are assigned by professionals. Things that are chosen by parents are not so therapeutic. This is by no means true of everyone, but as a thread in the discourse it further demonstrates parents search for competent, trained experts to make those choices.

Furthermore, although some parents did use music, art, sports, and animal therapies for concrete therapeutic outcomes related to autonomy, self-expression, and the like, there was also a parent version of professionals’ “pleasant experiences” that are not “true and proper therapies” (as described in Chapter 4). For parents this category came in the form of “hobby” or “doing something they like.”

School

This subsection considers the scholastic context, adding an experience-near perspective to the schooling policies described in Chapter 2 and further demonstrated parents search for competent professionals. Schooling was a particular problem for many parents. It depended a lot on what kind of teachers and school principals these families encountered. Some had good experiences, others bad. As with therapists, parents’ complements and criticisms demonstrated the importance of competence and preparation for professionals. Complementary terms included esperta (expert), professionale

(professional), attenta (attentive), in gamba (on the ball, lit. “in leg”), informata

(informed), sensibile (sensitive). Critical terms included ignorante (ignorant), non preparata (unprepared), chiusa (closed), and incompetente (incompetent). A lot depended on the person with whom people with autism worked. Parents sought competent persons, as in the therapists above. For some, competence simply was not found in the schools but was found in the services their children attended later, the next section.

Relationships with classroom teachers, support teachers, and educatori were 255

extremely important to students with autism, as will be discussed in more detail in

Chapter 6. As we will see in the below discussion, the quality of the teacher made an overwhelming difference. However, when it comes to support teachers and educatori, another problem arose – these figures changed frequently, sometimes multiple times a year (Maggiolini and Molteni 2013). Parents often felt these changes strongly.

Integrazione was an important goal for many parents. One explained that it was her primary goal at the school, saying, “L’obiettivo è l’inclusione sociale non la scolarizzazione, OK?” (The goal is social inclusion not scholarly learning, OK?). Parents praised educational professionals who created environments that favored integration, describing for example, “degli ottimi insegnanti che hanno inserito [figlia] secondo me in modo eccezionale all’interno della classe e nelle attività che hanno svolto” (some great teachers that inserted [my daughter], in my opinion, in an exception way inside the class and in the activities they undertook). Another described a teacher as a “maestra eccezione, e riusciva a contenerlo, insomma, a farlo stare in classe. Certo, faceva ben poco. Una scrittura molto particolare (an exceptional teacher, and she succeeded at containing him, in short, at keeping him in the class. Certainly, he did not do very much.

A very particular writing assignment, very blunt).

In turn, parents complained about lack of integrazione or times when the law was not applied correctly. A father at a party once pulled me aside to ask me about schooling laws in the U.S. and tell me about his son’s experiences. He told me that given his experiences, the law is good but the practice can be quite varied. Other parents spoke of this tension in interviews, such as the parent who explained, “Tutti i problemi con i famosissimi insegnanti di sostegno – che sono belle le leggi italiane, però poi dopo se 256

non si reisce ad applicare, rimangono solamente con una bella cornice” (All the problems with the famous support teachers – the Italian laws are great, but then afterwards if they are not applied, they remain simply a pretty frame). In such statements, parents unequivocally state their support for the law, but identify shortcomings related to its execution.

Most parents who talked about separate classrooms did so negatively. Parents complained that they were a waste of time where students did not learn, where parents did not know what students were doing, and where the teachers ignored the students. The following parent links this complaint to the law and explains a recurring concern that support classrooms can function as “ghettos” for children with disabilities:

What they were really doing during the support hours, that is what I was saying earlier: now he says that the support teacher sleeps. He had many support teachers, but the refrain is always the same. Well, the support hour is a ghetto. That is, how does the support work? The kids are taken and placed in the support classroom, and there they do... no one knows what. I maintain that the support is – must be carried out in the classroom, together with the others, because the support serves to allow the person with a disability to be integrated into the classroom, and instead it works like this. - Interview

Parents often echoed the complaints of this interview: that they do not know what goes on in the support classroom, that the teachers are inattentive, and that their children are separated from the other students.

There were, however, parents who had positive experiences with support classrooms. One parent explained that she would have preferred a separate room:

There are not always… principals or directors that are sensitive to these problems therefore even there I had a great struggle because in the first year of elementary school they only gave him 6 hours of support. They did not have a class for him to go, he had to stay in class with others and therefore in practice it was a disaster. - Interview 257

For this parent, the support classrooms were not the problem – the regular classrooms were. More support hours would have been preferable.

Parents praise specific programs. Sometimes professionals went to the school to train teachers. Another preferred a special school, in part because of problems like those discussed above:

Mother: Then he went to elementary school. I wanted him to stay with the neurotypical children to learn to stay with them. In the fourth year of elementary school, I was angry. Anthropologist: Why? M: He had very great difficulty. I took him out and sent him to a special school. (A school for children with eye problems). A: How did it go? M: [….] Very well. Only two years. Then he went to middle school. I did the first and second years at public school. A disaster. Enough. The teachers did not succeed in managing the situation. The other mothers did not accept him. [He was] always alone, isolated in a room with two support teachers. - Interview, Parent at Day Center, Not Audio Recorded

Another mother who took her daughter out of school and straight into a day center recounted a conversation she had with another mother just before hand:

And she told me this: “[Signora], do not make (for yourself) the biggest mistake of my life, what I did, sending her to middle school, because it is nightmare.” Because then it all depends on the teachers, then, that you find, eh? - Interview, Parent at Day Center

Another parent expressed ambivalence about the special room:

Well, elementary school was a fairytale, Ariel, a fairytale. Because there were these really available teachers, the children were all friends, I had children in my home every day, he went to the parties. That it, it was all a fairytale, I tell you. Teachers, educatori, all good. A fairytale. In middle school it went well enough in the sense that uh in class he stayed a bit less but he had a support class where there was a good group of kids with various types of problems, not only intellectual disability but also the suffering of a foreign student, or an adopted kid, or a kid with other problems. Therefore they were a good group. And I would say that it went well enough. From the, how to say it, didactic point of view. From the relational point of view I tell you that he lost all his friends, and therefore his group was these 4, 5, kids here. - Interview, Parent at Social/Recreational Activity Group 258

A few parents even filed denuncie (lawsuits or formal complaints) against schools.

Parents who had good experiences at schools often framed this situation as being fortunate. They explained, for example, “Per fortuna gli utlimi anni abbiamo trovato degli bravi insegnanti per cui io gli ho fatto ripetere un anno. Lui è stato inserito in una classe in cui ha avuto davvero un grande aiuto da parte degli insegnanti” (Luckily the last years we found some great teachers for which I made him repeat a year. He was inserted into a class in which he truly had a great help from the teachers). With the frequently changing staff, much varied person to person. Parents also expressed this variation in terms of fortune, for example, “Però siamo stati fortunati con l’educatrice perché dopo la prima questa (nome) che è stata con lui per 5 anni” (But we were fortunate with the educatrice because after the first, this (name) that was with him for five years), and “Terzo anno siamo stati fortunati, bravissima ragazza” (Third year we were very fortunate, a very great girl).

Several parents work closely with the schools. One mother talked about creating

“la scuola informata” (an informed school), explaining “quindi avere dei genitori consapevoli che a questo punto rendono consapevoli anche la scuola è stata fondamentale” (therefore having some aware parents that at this point make the school aware too, it was fundamental). Two parents fought to have their children graduate normally rather than get held back or receive only a leaving certificate. Another fought to have her daughter complete the exit exams for obligatory schooling so that she could leave school and enter a day center after middle school, rather than completing a leaving certificate at 18. The parent organizers at one Social/Recreational Group worked hard with the professionals at that group and the local schools to find a secondary school that 259

would accommodate three of their children as they finished middle school this year. Their goal was primarily social inclusion of the students. There was one dissenting voice, parents whose child finished school after the terza media who spoke out against a friend’s push for such inclusion:

We know people who have children with severe disabilities. And one of these graduated from college. How much this degree was earned… for me it was gifted. However, it did damage, in my mind. Because this youth has a degree, and therefore has expectations, those expectations that the fact that he has that degree gives him right to have. But unfortunately he will never have, they will never be satisfied, those expectations. Because he lives in a context in which… mmm… it’s not – there’s no work for the – for regular applicants. Besides then, he also has problems that make it that his degree will never be applied in something practical. So this youth is really – he went into crisis, he went into crisis – he’s really bad off! If his family, instead of aiming so high, would have aimed much lower and inserted him in maybe a work context, and by now he would may have had a job, been satisfied. - Interview, Parent at Day Center

Indeed, the children of many parents in this sample left school before finishing secondary school. Eighteen parents (47%) specifically mention their children leaving the educational before secondary schooling and going straight into day centers, residential centers, or other similar services. Seven parents (18%) specifically reference going to school part time and centers part time. The transition out of schooling could be very difficult. As one parent explained, “C’è un buco nero per cui fino a 14 anni, la scuola dell’obbligo” (there is a black hole after 14 years, after obligatory schooling).44 Parents discuss their decisions at the end of this period. One parent explained that while in the early years her son had substantial support, this changed as he progressed in schooling. In

44 See also Molteni (2011), which presents the story of Donata Pagetti Vivanti, who writes, “Eppure, spente le candeline dei diciotto, senza una ragione plausibile perché nulla nella realtà cambia, la burocrazia sanitaria li trasferisce in una specie di buco nero, una terra di nessuno dove letteralmente non sono più riconosciuti” (and then, as soon as the 18th birthday candles are out, without any plausible reason because nothing changed in the real world, the healthcare bureaucracy transfers them into a type of black hole, a no- man’s land where they are literally no longer recognized). 260

middle school, the number of hours were reduced, and he would have only been able to attend school for those fewer hours in which he had support. Others could progress through middle school, but not secondary school:

For youth like [my son] there was no possibility of entering into secondary school because in the secondary schools they demand autonomy at 80% and, that is, well, I go and do the secondary school, that is, my son cannot go. And therefore after four years of middle school, he was supported by [this service], by day centers. - Interview, Parent at Day Center

There was the problem of finding somewhere that would insert him into other types of activities. I did not want to insert him in a secondary school because given that I work with the schools, as my job, I knew that they were not equipped for these problems. - Interview, Parent at Residential Center

Some parents explicitly stated that they found the Day Centers to be better equipped than the schools. One parent told me, “preferisco questo servizio della scuola. Avrei iniziato anche prima” (I prefer this service to the school. I would have started even sooner), citing the clear daily communication from the center via written diaries that the school did not have, and the focus on sports for her son to let off tension. Another parent explained in no uncertain terms:

And then nothing, I found this place because she would have needed to start middle school, and well... what do I send her to do? It’s worse there, in the middle schools, because already she was 13, 14 years old, it was worse. Because the little kids are already bigger. And well… I decided to send her in a school like…. I found this place, which was my salvation, see. - Interview, Parent at Day Center

This chapter therefore now transitions, as did these youth, into the context of services.

Services

Parents discussed their experiences at the types of centers at which I conducted participant-observation (Day, Residential, and Social/Recreational) as well as temporary residential services providing weekends away, and a professional school. As in all 261

interactions with professionals, parents used complementary terms that revealed the characteristics they found important, including disponibile or disponibilissima

(available), attenta (attentive), preparata (prepared), ingambissima (on the ball, lit “very in leg”), and benformate (well trained).

Parents heard about services in a variety of ways, as expressed in Table 13. While the narrative below addresses parents’ experiences in the services from which they were recruited and other services they encountered, this table refers only to the services from which they were recruited.

Table 13: How Parents Heard About Services Heard About Day Residential Social/Recreational Total Center Center Activity Center (N=38) (N=16*) (N=11) (N=12) Comune/Assistente Sociale 8 0 0 8 Physician or Therapist 3 2 2 7 Parents’ Association 1 4 1 6 School 3 0 2 5 Parent of Another Attendee 1 2 1 4 Friend or Family Member 1 3 0 4 Involved in Founding it 0 1 3 4 Previous Service 1 1 0 2 Internet 0 0 2 2 Random Encounter 0 0 2 2 * Column totals exceed participant totals because some participants heard about the service from more than one source

I wanted to understand why parents chose these specific places. Parents contrasted them with other places (both schools and other services). One father stresses the importance of respect for parents. He recounted an argument he had with a psychologist who wanted to send his daughter to a place he had visited and determined would not be ideal for his daughter. He explained that he was looking for a center where there were some other youth who had slightly superior skills to his daughter, because she imitates a lot, and he did not want her to regress by imitating only those who had fewer skills. In the 262

following passage he explains his disagreement with the psychologist and contrasts it with his experience at his daughter’s current day center.

And in that structure I maintained that the situation for [my daughter] – not because they didn’t do their jobs well but because that structure, in my mind, was not compatible with [my daughter]’s pathology. And well, I refused it. And I had a conflict with this [psychologist] because she believed that she was the best, the person that knew what to say, […] she allowed herself to judge a girl that she had seen a half hour but I knew her for her whole life. Allow that a parent could better know the problems of his daughter. Then here I can listen and the doctor the people that are here at the center, they have already known her for several years. If they tell me something, I listen because I know that they live it daily. Since I have faith in them I say, “OK.” [….] But if you believe that you understand a person because of one single meeting that you had, and to send her where you believe is best because there they have a place, there they have a situation that you find comfortable, no, this, no. - Interview, Parent at Day Center

Many parents talk about finding a center dedicated to autism and contrast it with previous centers that were not autism specific. These centers could be problematic both for lack of staff trained in autism specifically, and for the presence of other youth whose behaviors could be especially difficult for youth with autism to handle. One couple whose child attended a residential center similarly explained that at a previous, mixed-disability day center, despite having great staff was a place “Dove si mettavano tutte le sitauzioni grave ma anche poi uno disturbava qual’altro in sostanza” (where they put all the serious situations together but also then one disturbed another, basically). Another couple at a day center described a similar experience. The mother explained of a previous day center, “Non è andata molto bene perché c’erano gli spazi che non erano adeguati, c’erano operatori che non erano adeguati… ehm… c’erano patologie fianco a fianco che facevano scintille, per cui assolutamente non è andata bene. Da lì è arrivato qua” (It did not go well because there were inadequate spaces, there were inadequate staff members, there were people with other pathologies side by side that made sparks, so it absolutely 263

did not go well. From there he came here). This couple explained that things went much better here, and that their son regained some skills he had lost in other centers after middle school. I asked how this center was different, and the father explained, “qui ci siano le competenze per trattare l’autismo” (here they are the skills for treating autism) whereas in the other services, “hanno competenze per i Down, per… cioè, per quelle patologie che in realtà non sono molto problematiche. Cioè, il Down è così e… non crea problemi” (they had the skills for Down Syndrome, for... that is, for those pathologies that in reality are not so problematic. That is, Down Syndrome is like this and… it doesn’t create problems). Parents often invoked a comparison between autism and Down

Syndrome, and often argued that autism is much more problematic.45 One mother describes her evaluations after her son was rejected from a mixed-disability residence for his behavior. She explained: “Secondo me è opportuno inserire ragazzi autistici in strutture specializzate. Sopratutto perché gi educatori sono preparati specificatamente per lavorare con ragazzi autistici. Le attività sono adeguate ai ragazzi autistici. Gli altri genitori hanno tutti ragazzi autistici per cui nessuno si lamenta di eventuali crisi, di eventuali aggressioni, ecc” (In my opinion it is opportune to insert youth with autism in specialized structures. Above all because the educatori are specifically prepared to work with youth with autism. The activities are adequate for youth with autism. The other parents all have children with autism so no one complains about any crises, any aggression, etc.).

The issue of autism specificity is a complicated one, not appealing to all parents.

45 As Seltzer and colleagues (2004) note, families in which a member has Down Syndrome are commonly used as a comparison group in research on families in which a member has autism. 264

A mother at an autism-specific day center told me, “Non è giusto che siano soli autistici.

Meglio che ci possano essere chi che parla, ecc. Sopratutto Down, che sono più svegli”

(It’s not right that they are only people with autism. It would be better if there could be someone who talks, etc. Those with Down Syndrome, above all, who are more alert).

The isolation of people with autism, I don’t find it right, because in my opinion if my son must hang out with the others, maybe one who has a little bit of a learning disability, another who has a physical disability, etc., he integrates much better than when it is just between them. Because each of them is isolated enough [….] but here [at the day center], let’s say, for the instruction like this, fine, but for the vacations, or also if there were to be a residence, I think it would be better if they were mixed, in my opinion. - Interview, Parent at Day Center

Some parents, especially at Social/Recreational Groups, talk about tension upon first considering an autism-focused place. Both of the parents below had previously attempted to give their children opportunities to socialize in contexts that had nothing to do with disability, such as the oratorio – Catholic youth centers especially active during summer break as day camps and central to Italian youth experience.

In the beginning for [my husband] let’s say, the idea of putting [our daughter] in an environment of people with Asperger’s Syndrome was a way of ghettoizing her. He did not manage to see the possibility on the other hand, finally, of an interaction for her. Ok? When finally then he came and noted that finally his daughter interacted with someone. - Interview, Parent at Social/Recreational Group

But I looked at it, I said no, because my impression that I have always had was, let’s make him go both to places where there are people like him but also places where there are people that are different from him. After that, (look), I understood that it did not work that way, that with the “normal” people, so to speak, he does not manage. And it stresses me out, this [service], as the first idea that I saw, or I talked with someone, because I had the experience of my friend who started with an association for children with Down Syndrome from which she escaped because, she told me, and this (they experienced little), all the parents talk about the same problem, in my opinion it does not relieve the spirit. Look. It stresses me out more. And so at first I said no. - Interview, parent at Social/Recreational Group

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Parents found other positives in the services, praising them for good communication, for making the parents feel supported and in good company, and for the careful structuring of the environment. For example:

I was astonished because I found a lot of silence. Something that wasn’t at [a previous service], where there was a confusion (inaudible). I entered and I said: this seems to be almost a paradise here, for these youth, I promise! Because there it was an undefinable chaos. And I was saying, “How can it be that these youth with autism are busily working here?” Because there I saw them at their table, where they were doing things, I do not know what, however… very contained, very busy. Look, this was my first impression: The silence, of these youth, occupied at the tables and all silent. The educatori that floated between the tables… this was my impression. Because the confusion really bothers [my son], the noise… and I said, “ah, maybe this is the right place for him.” - Interview, Parent at Day Center

One residential center was run by parents of people with autism, which parents in my sample found particularly reassuring to have it “gestita dai genitori o dai fratelli [….]in mano di noi dirattamente interessate” (managed by parents and by siblings [….] in the hand of we who are directly invested in it). At a Day Center, one parent specifically praised the fact that the staff were parents, though not of children with disabilities.

Some parents praised the staff for their appropriate handling of difficult patients.

For example, the following parent contrasts her daughter’s day center with her earlier experiences at school.

[At school it went] poorly. She was promoted. In reality she arrived here not knowing how to read, the write, nothing [….] It was lost time. Always arguments with professors, fights, hyperactive, not staying at her desk. She was convinced that the only thing to do was to throw herself to the ground. The school called me, I picked her up. I explained to the educatori, and they told me no, the girl will be re-taught 100%. - Interview, Parent at Day Center, Not Audio Recorded

A parent at a residential center framed this situation in terms of the daughter’s anxieties.

When she first entered the residence, her daughter had a very hard time, expressing her 266

discomfort by destroying everything she could. Her parents explained:

However she certainly found a prepared staff that at any rate in the face of these things were never, in quotation marks, “scared” or… because then her worry was always saying “they don’t want me anymore, they are sending me away.” Because her experience was that she acts like this and then gets sent away. Sent away from the school, from the center where she was, from the day center, from us, therefore sent away. - Interview, Parent at Residential Center

Unlike these previous settings, this residential center, however, did not send her away.

Rather, according to these parents, they said, “siamo in difficoltà ma vediamo ritrovare la strada per uscirne” (we are having trouble but let’s look to finding the route to follow).

This perpective was important to her parents, who explained, “Quindi anche nei momenti difficili abbiamo avuto questa percezione, e poi abbiamo visto che non era sola una percezione ma che era così, che era personale preparato che sanno cosa stanno facendo.

Perché non si sono arrese. Ecco questo, e questo ci ha detto la convinzione”(Therefore even in difficult moments we had this perception, and then we saw that it was not just a perception but that it was like this, that the staff was prepared, that they know what they are doing. Because they did not stop. See, this, and this gave us the conviction).

True criticisms were rare, and parents rarely even volunteered things they would like to go differently. There is, of course, a notable potential for bias since I recruited interview participants through services. Parents’ complaints related to staff changes, resources, and once just the other youth at the center. Parents almost always followed up with statements explaining that they understood why staff did what they did, just as staff often followed up their rare complaints about parents with similar comments of understanding. Parents expressed their desire for more activities, for specific other activities, or for more direct involvement of their specific children in activities. They 267

spoke about regretting the loss of staff who had gone elsewhere. One parent wondered if maybe the other opsiti were too loud and created a bothersome environment, but noted it was not their fault but the fault of their “pathologies.” Another parent similar wondered, though not as a criticism, about the range of the spectrum in one service, asking herself,

“è giusto che condivide la sua vita con così tanti ragazzi che hanno capacità magari inferiori alle sue?” (Is it right that he shares his live with so many kids that have skills that might be below his own?) but then explains, “in un minuto, mi do la risposta, nel senso che [figlio] si trova benissimo, perché in realtà anche lui ha un problema di autismo grosso. Però per certi aspetti sembra più evoluto. Invece in realtà ci sono altri ragazzi che magari sembrano meno evoluti di [figlio] che hanno delle capacità cognitive molto più alte di [figlio] e che sanno magari sviluppare un pensiero molto meglio di lui”

(in a minute, I answer myself, in the sense that [my son] does really well there, because in reality even he has a serious problem of autism. In some ways he seems more advanced.

But in reality there are other kids that maybe seem less advanced than [my son] who have much higher cognitive skills than (my son) and maybe know how to develop their thoughts much better than he does).

Other wishes related to specific goals for participation, to which this chapter now turns. Table 14 outlines parents’ goals for participating in the services from which they are recruited, although the narrative draws more broadly also from other services and what we can learn about parent goals from comparisons and contrasts with the services from which they were recruited.

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Table 14: Parent Goals for Participation Goals for Participation Day Residential Social/Recreational Total Center Center Activity Center (N=38) (N=16*) (N=11) (N=12) 1. Autonomy 7 3 1 11 1. Close to Home 2 0 0 2 1. Learn and Grow 4 3 0 7 1. Something to Do 3 1 2 6 2. Child is Content 3 7 1 11 2. Il Dopo di Noi/Distacco 2 3 1 6 2. Too Difficult to Manage at 0 2 0 2 Home 2. Service Becomes Home 0 1 0 1 2. Child is Respected 0 1 0 1 3. Child Feels Understood 0 0 1 1 3. Interact with Others 1 3 5 9 3. Learn Social Skills 0 0 1 1 3. Make Friends 0 1 6 7 3. Physical Activity 1 0 2 3 3. Social Inclusion 0 0 1 1 3. Support Group 0 0 1 1 * Column totals exceed participant totals because some participants heard about the service from more than one source

This table breaks down parents’ responses to questions about their goals for the service and how they started using it by type of service. This is not to say that parents did not achieve, for example, greater autonomy in other services – just that they did not list it as an initial goal. This table shows that goals varied by type of site. I have loosely clustered these goals into three categories which were associated with different types of sites, in line with their purpose. Common goals for attending day centers including learning and growing, increasing autonomy, and having “un impegno” (an obligation/commitment). Common goals at Residential Centers included having their child be content and addressing the issue of “dopo di noi” (after us). Common goals at

Social/Recreational Groups were indeed more social: making friends, interacting with others, being understood, and having a support group. This subsection further unpacks 269

these goals, looking at parents’ narratives about services more holistically, including their stated goals, the outcomes they have observed, and their wishes – things they would like services to do that they do not currently do.

Some parents listed autonomy as their goal, and others talk about the autonomy their children learned at the service beyond their expectations. Learning and growing are a part of this, too, although may related not as explicitly to autonomy but to behaviors.

Another parent lists some specific skills, including hanging laundry and setting the table.

Sometimes Social/Recreational Groups provided the opportunity for people with autism to practice autonomy in a more natural setting. Two parents of children at

Social/Recreational Groups specifically mention the importance of their children having somewhere to go autonomously, a space that is all their own.

Several aspects of Day Centers aligned with these goals. As described in Chapter

3, youth with autism generally arrived at Day Centers with their parents or via shuttle busses. Although each Day Centers had different physical structures and different ways that physical space was divided, they also had several features in common. All of the Day

Centers had copious amounts of visual cues. Signs on doors explained visually what was on the other side. Signs on drawers and cabinets showed their contents. Agendas lined the walls, one for each person explaining the order of events for the day. Pictures of each ospite identified their locker or coathook. Each had two or more rooms where the ospiti spent their free time or waiting time during the day. Often each ospite had a designated desk, sometimes with their name or favored free time items. Some free time spaces were less structured, with couches and lounge chairs and shelves of games, books, and activities. For some ospite, these spaces wer more private, with separate rooms or 270

cubicles that were open to the main space but provided some personal space from the others for those who were bothered by the group setting. Each Day Center also had separate work stations for lavoro indipendente, as described in Chapter 4. In either a separate room or a dedicated table in the larger room, each Day Center had dining tables for lunch as well as other group activities (such as cooking workshop).

People with autism did not necessarily spend all day in the physical Day Center itself, but might travel around the community by foot or by public transit. What was it like traveling on the public transit system with people with developmental disabilities?

People with disabilities are entitled to a reduced fare bus pass, which our group used. We also used the wheelchair accessible entrance, which allowed us to enter as a group and avoided any problems anyone might have using the turnstyles in the other entry lanes.

Most of the people in our group, like many people with autism, did not have any visible markers of disability. Although some of the ospiti engaged in slightly “off” behavior such as rocking or shaking their heads, or even just wore sweat pants in a city that did often consider sweats and sneakers inappropriate for riding public transit,46 only a few people ever stared and people seemed to sit next to the ospiti without problems. Once we met another day center group, and one of the Day Center's staff asked one of their staff where they were coming from. Another time, a woman on a bus struck up a conversation with

Day Center staff about where we had been as a group. We encountered some transit annoyances such as musicians and panhandlers, but with minimal disruption to the ospiti.

The staff asked specific ospiti to announce when our stop was arriving one the metro, to

46 Some former roommates of mine – young professionals like myself – once told me how surprised (bordering on scandalized) they were when the visited the United States and saw people wear sneakers on the subway. They told me sneakers were only acceptable for the gym. 271

read the time remaining listed on the electronic signs that tracked the buses, or to push the stop requested button on the bus. In the latter case, someone explained that he could do it because of the routine more than because he knew how to operate the bus. However, it was still a sort of travel training.

Another goal at Day Centers was giving young adults something to do or provide the rhythm of a normal life. This concept of the normal life also ties into a life cycle perspective. For adolescents, some parents who talked about this wanted them to have a peer group and a gradual distacco from their parents, much like professionals. For adults some parents talked about having something to do during the day and, perhaps, somewhere to go at night:

I hope that in this way my son is occupied. Doing something that he likes. And being with others. And doing sports and… and… and becoming in this way always more autonomous. - Interview, Parent at Day Center

This theme appeared regarding Residential Centers as well, and at Social/Recreational

Groups parents talked about looking for their children to have somewhere to go and not be stuck at home all day especially on weekends:

He likes it. Initially he sometimes did not want to go there, up when… yeah. Then… bit by bit because first indeed he had trouble even at really… at needing to go out at that specific moment. Instead then it became even a routine, something habitual, therefore… he is a bit used to it, no?, to having this commitment. - Interview, Parent at Social/Recreational Group

Though one mother wished the Social/Recreational Group could provide something a little more of an obligation:

I like it all. Look. Just that he does something, sees his interests [….] Then for the rest I would like indeed that he could do something, not for pay, for goodness sake, but to do something that isn’t just for fun [….] If there could be something, not just for fun, maybe… he could do something of a commitment like more if, a 272

real commitment, maybe it could be useful, like I do not know if something like this has ever been thought up. - Interview, Parent at Social/Recreational Group

This theme resonates with Mehrotra and Vaidya’s (2008) report that day centers in Italia give men with autism “something to do.”

Attendance at Day and Residential Centers could be normalized through analogy to school or work, the type of commitments age mates usually had. Parents reported that their children referred to both residential and day centers as “scuola” (school).

Although parents often removed youth from services if the youth expressed strong and consistent resistance to going, some amount of resistance could be normalized as well. One parent at a Day Center told me, ‘Ci sono giornate che non vuole venire, come uno non vuole andare a scuola, non vuole andare al lavoro’ (there are days that he does not want to come, like one does not want to go to school, does not want to go to work), and another, “come magari tutte le persone che o vanno a scuola o vanno a lavorare rientrano con un umore particolare un giorno (laughing) però in genere sempre tranquilla, serena” (like maybe everyone who goes either to school or to work, they come home with a particular mood one day (laughing) but in generally she is tranquil, serene).

Parents might also normalize residential centers as homes, explicitly linking them to life cycle goals of independent living in adulthood. One parent at a residential center explained, “Ha la sua vita, pratticamente, come se fosse sposata, no? (laughing) è uscita dalla [casa all’età], vive nella sua casa, insomma” (She has her life, practically, as though she were married, no? (Laughing) She left [home at the age], living in her home, in short). Another mother told me with pride, “per lui la sua casa è questa qua. Lui dice 273

che ha quattro case” (for him his home is this one here. He says that he has four homes), refering to his natal home, vacation homes, and current residence. She continued “Però lui si chiama “casa” adesso questo posto qua” (but now he calls ‘home’ this place here).

Similarly, a mother expressed her hope for achieving this sense of home:

I hope that it becomes a bit like his home, for him. Now it’s a little early [….] [Service] represents his workplace, where he goes to work Monday through Friday. [….] For me it means that [my son] uses it, uses [service] really like his workplace, his activity. But then there is a house where he has his possessions. In the future it may be that he refurnishes his room [at the service]. In my opinion, the moment he starts to refurnish his room could maybe be the moment where his home becomes [service] but it’ll still be a while. In my opinion when he really becomes a grown man. Bit by bit he will start this process. - Interview, Parent at Residential Center

Temporary residences for weekends away also provided important age-based opportunities, such as in the case of a parent who explained, “a [filgio] piace questa cosa perché è con gli amici, è fuori casa con gli amici, no? ormai ha l’età per essere, per vivere da solo, voglio dire. Avrebbe l’età per vivere fuori di casa quindi lo fa molto volontiere” ([My son] likes this [temporary residence] because he is with friends, he is away from with his friends, no?, already he is of an age to be, to live alone, I want to say.

He would be of an age to live away from home therefore he does it very willingly).

The permanent residences that I visited did a lot to accomplish these goals.

Chapter 4 discusses the ways professionals sought to integrate entry into Residential

Centers with life cycle expectations: youth with autism should not move to Residential

Centers as soon as they turn 18 because youth without autism in Italy do not move out of their parents’ homes as soon as they turn 18. However, the autism specific Residential

Centers I visited were designed to be for adults – young adults and older – not for the elderly. Parents and professionals in fact expressed fear of people with autism entering 274

into elder care residential facilities where they might be far younger than everyone else.

A few parents specifically mentioned how glad they were that their young adult children could be with people – both other residents and staff – who were their own age.

Both of the residential centers I visited were far from city centers – one in a small residential neighborhood at the edge of the city, and another in the country completely on its own though near several towns. Both took a while for me to get to. When they had to leave home, the residents generally took shuttle busses or traveled with staff to go to Day

Centers or activities; and generally left with their parents if they were visiting their parents’ home for the weekend or holidays. Parents sometimes remarked on the distance, although it could be both a positive and a negative. One parent repeatedly lamented that there were no autism-specific residences closer. Yet others considered city life too overwhelming for their children, and were glad they could have the respite. Staff and parents from both Residential Centers stressed how these were the residents’ homes.

These homes were very private, in the sense that they were generally occupied solely by the residents, staff, and tironcinante but not other family members, friends, or visitors.

Residents had single or double rooms which some furnished more than others. While a few residents were very eager to show me their rooms, for the most part they were kept private. In terms of common spaces, Residential Center 1 had two floors, a balcony from which residents sometimes greeted guests, a kitchen, a living room, a patio, and a second floor recreational room. Residential Center 2 had three separate apartment buildings, with a dining room/kitchen, living room, and backyard. These apartment buildings were the true homes of the residents where only those individuals who lived there, and staff, had breakfast, dinner, snacks, and evening leisure time. Residents from all three buildings 275

came together in common spaces such as the large dining room for lunch, the large common room for various activities, laboratories for various workshops, and outdoor spaces for trekking and agricultural activities. In these ways, the physical space of the

Residential Centers was intentionally structured to reflect homely ideals and resist the institutional feel that professionals and parents so often lamented and feared. Like the

Day Centers, Residential Center 1 had several visual cues – photographs on cabinets of what was inside, photographs on doors of what is on the other side, color coded bedrooms, agendas on the wall. Residential Center 2, which followed an ecological approach, did not. Rather, a schedule was posted on a bulletin board that residents (at least those who could read) consulted as well as staff. Residents who did not read asked staff about the schedule or followed staff instructions.

Though residential placements could be normalized, this is not to say that they were not tricky. Sometimes, though rarely, it was that children were too difficult to manage at home. Parents expressed a lot of anguish over this decision. For example:

And therefore since I was left pretty alone and I was... I was no longer able to manage the situation, I knew it. I was doing poorly, he was doing poorly, we were all doing poorly. And nothing, I took him to [a residential community]. And in effect after a week there, things were decidedly better. He was decidedly better. Therefore I said, “Fine, you did a week of monitoring him, now let’s try again at home.” We had not even arrived at the house, it was all like before. Everything like before. In fact I remember that I held out a month, I held firm […] in the end I gave up, I said that “let’s send him to the community” even if I was not in any way in agreement, because I did not want to separate myself from a 16 year old kid. But I did not see any alternative, because since they told that medication wouldn’t do anything, one couldn’t calm him, and it was true. - Interview, Parent at Day Center

While describing this difficulty decision, many parents linked their child’s move into a residence to the life cycle:

Then you know folk, relatives, some [say] “Ah! You put her in an institution, eh!, 276

how come!” I mean, an institution that then, fine, let’s say that they community is something else. Fine, but I … these things are not important to me, what is important is [my daughter’s] choice, and for her it was the right thing, look [….] If I must be sincere, when we went to take [my daughter] here as she is, the next step was going to be being having her able to come home. That [my daughter] could return home. With us. That she could stay with us. However since we had already made this step, and maybe as a mother I also understand that always staying with mother and father isn’t the right thing. Maybe it seems like it to us, but not for her. - Interview, Parent at Residential Center

The need for an adult life ties into other goals of addressing the “dopo di noi” and to ensuring their adult children have better lives.

The term “dopo di noi” translates as “after us” and refers to the problem of ensuring the care and quality of life of people with autism, especially those with high levels of support needs, after their parents age beyond the ability to care for them.

Professional and advocacy circles and documents tended to phrase the problem in this way. Parents phrased this problem in a number of ways, most prominently “quando non ci saremo più noi” (when we are no longer here). When I asked parents about their fears and worries, 27 of 3647 (75%) offered some version of “the future,” “a later tomorrow,”

“after us,” “when we are no longer here,” or “when we die.”

Both permanent and temporary residential experiences allowed parents to feel their child was more prepared for this eventuality. One parent at a residential center explained that many families find themselves in trouble when the parents die and the adult child, in his 50s, must live without them for the first time. This parent explained,

“Per cui la mia idea era fare qualcosa ma intanto che ci siamo noi. Non aspettare che non siamo più in grado noi da seguire” (and so my idea was to do something but while

47 In two interviews, these direct questions were not asked. 277

we are still here. Not to wait until we are no longer able to care for him). Another parent hoping to get her son involved in a residence explained, “Così quando succederà un qualcosa, non è uno shock. Giusto? Diventa una cosa che lui ha già provato. Poi gli mancherà la mamma, gli mancherà il papà però lui ha già provato. Non deve essere una cosa che si trova lì da un momento all’altro e finisce in un istituto di quelli... che vedi in televisione” (This way when something happens, it isn’t a shock. Right? It becomes something that he already tried. Then he will miss his mother, his father, but he will have already tried it. It doesn’t have to be something that one finds there in the moment and he ends up in an institution… that you see in television).

In both this planned for future and the present, parents spoke particularly of being sure their child was content – contento, sereno, tranquillo. For example:

Father: The goals are that she becomes always more autonomous and carries out her life, and has also a good future. These are the goals. Mother: Serene, and that she is always happy to come here. Because other places where… it’s not possible. Even their rhythms, their daily life. - Interview, Parents at Residential Center

The words sereno and tranquillo and their derivatives appeared time and time again in parent narratives. The theme of serenità was especially strong also when I asked parents about their expectations and hopes for the future. One parent explained it simply, “un po’ di tranquillità” (a little tranquility). The tranquility or serenity of youth with autism generated tranquility or serenity for their parents, who knew they were going to be OK:

I would like something either like this or an apartment, protected, however, in the sense that he cannot stay alone, obviously. Something… I would like… to be tranquil, to say OK, my son can stay by himself. - Interview, Parent at Social/Recreational Activity Group

One couple explained that the Italian word serenità could have a double meaning, because it could also be used to refer to sedation (although I personally never heard it 278

used that way). They explained further:

We are talking of psychological serenity, that is, the capacity to feel safe and therefore to be able to preview that happens and therefore be able to choose. And it is not just learning but I believe really being able to confront choices and realize things, new behaviors, habits [….] Everyone, I believe, we are very convinced in this family that it is worth a lot even for so-called normal people. They are normal, maybe very intelligent, paralyzed by anxiety, nervousness, incapacity to decide. In someone with autism, oh, you so it so much more! - Interview, Parents at Residential Center

If day centers were primarily associated with learning skills and autonomy, and residential centers were primarily associated with having a good quality of life “dopo di noi,” Social/Recreational Centers were most associated with building a social life.

Parents talked about wanting their children to make friends:

The main goal is – [my son] is alone, he needs a friend group therefore a nice friend group. That is, he waits for Friday to see his friends and his team sport, staying together. And going out alone without parents. It makes him as autonomous as possible. Therefore the reaching of a distance, of an autonomy, but above all feeling good, that is, my friend group, ok? Even I have my friend group. - Interview, Parent at Social/Recreational Group

Parents also talked of the general need for a peer group:

Fortunately there is [this service] which is a very positive thing for him and on Sunday at least he has a moment to hangout with other people, with other kids. And I see him very content [….] Really immediately I understood that he understood. Because when I said, “look, let’s go to a place where there are kids that have a little trouble making friends, like you.” It’s enough. He was at his… maybe he felt equal to the others. - Interview, Parent at Social/Recreational Group

Social/Recreational Groups did a lot to accomplish this goal. They met largely in evenings and weekends, times when youth were free from their schedules at work, school, or Day Centers. The average age of participants at Social/Recreational Groups was younger than at Day or Residential Centers, and many were still attending school.

Some parents dropped their children off, and talked to the staff at drop off and pick up. 279

Other youth came to the Social/Recreational Groups alone, by car, public transit, walking, or biking. Getting to the Group may also be an opportunity to autonomy in practice. Some parents were involved in the Groups as staff or volunteers, but distinguished this from their role as parents of an individual youth in order to serve the whole group during this time.

Both Social/Recreational Groups had a lot of visual cues as well, generally in the forms of rules for participation. These rules may be posted on the wall or carried by staff in large binders. Unlike Day and Residential Centers, there were very few, if any, assigned desks or spaces at Social/Recreational Groups. All spaces were common spaces.

At Social/Recreational Group 1, the commonality of spaces was even more true in that sports practices were held in reserved pools or courts in public recreational centers, so that youth shared the space not only with each other but also with others who used the locker rooms and practiced before or after them. At Social/Recreational Group 2, most activities were held within the headquarters which was divided into several spaces with dedicated purposes: a conversation corner with comfortable chairs and couches, a comic book library, a board game library, a computer area, a kitchenette, and larger areas for theatre practice and so on. At Social/Recreational Group 1, youth followed the directions of a couch or staff member. At Social/Recreational Group 2, some youth participated in guided activities and some times were entirely dedicated to such activities, but at other times some or all youth could choose activities freely and spend time wherever they would like. Both groups also took many group exercusions to outside activities near and far from the headquarters.

Psychologists and anthropologists alike have long argued that adolescence is 280

associated with an increased reliance on and importance of a peer group (Erikson 1994;

Amit-Talai and Liechty 1995). Staff and parents participating in this study also linked peer group participation to the adolescent life stage, noting for example, “Ha proprio bisogno, non solo lui, tutti come loro a quet’età, basta mamma papà. Andare con gli amici” (He really needs it, not just him, everyone like them at that age, enough with mom and dad! Go out with friends). Chapter 6 describes youth relationships in more detail, but parents also reflected on their perceptions of their children’s relationships. One parent describes her son’s friendship with other youth, noting, “Se hanno le stesse difficoltà, se hanno le stesse caratteristiche, so che con [nome di ragazzo] si trova benissimo perché hanno gli stessi interessi, sono usciti qualche volta anche insieme così” (If they have the same troubles, the same characteristics, I know that with [boy’s name] he gets on really well because they have the same interests, they have even gone out together a few times).

Another describes her son’s relationship with a supportive adult, explaining, “So che tornava a casa anche contento di frequentare [nome di uomo], che comuqnue [nome] lo capiva, e parlava molto con [nome] e poi con tutti suoi diciamo amici. Io ritengo che questo centro sia indispensabile in questo caso per mio figlio, presumo anche per gli altri ragazzi” (I know he comes home also happy to have seen [man’s name], that at any rate

[this man] understands him, and he talks a lot with [this man], and then with all of his, let’s say, friends. I maintain that this center is indispensable in this case for my son, I presume also for the other guys). Although these relationships were more central at

Social/Recreational Groups, parents even talked about friendships at Residential Centers.

One parent explains, “Per lei fa un riferimento unico perché anche [...] tutti questi ragazzi della commmunità frequentono il CDD per ciò vengono insieme, tornano 281

insieme, si conoscono, pratticamente hanno fatto, fanno, amicizie” (For her it’s a singular point of reference because also […] all these guys from the [residential] community go to the CDD so they go together, come back together, know each other, they practically have made, are making, friends).

Some parents noted that their children’s relationships were more with staff than peers. One mother faced a lot of frustration with this situation. She explained that her son went a support classroom at school, “il rapporto era con l’insegnante” (the relationship was with the teacher) because the other kids had similar problems to her son when it came to social interaction. She then participated in a social/recreational activity group with her son, noting “questi ragazzi, almeno la maggior parte di loro, cercano anche durante le gite, cioè noi appunto facevamo queste gite per fargli socializzare. Però nella maggior parte dei casi, specialmente ragazzi più gravi, si rivolgevano sempre a noi accompagnatori. Quindi non creavano un rapporto di amicizia fra di loro” (these kids, at least most of them, sought even during the outings, that is, we indeed did these outings to make them socialize. But most of the time, especially with the more several affected kids, they interacted always with us chaperones. Therefore they did not create friendly relationships among themselves). Despite her efforts, her son had not made friends. At the current social/recreational activity center, he did go out a lot with a particular friend.

All tolled, however, she explained, “credo che gli faccia piacere per lo meno il rapporto con gli animatori. Perché effettivamente a noi sembra che principalmente il dialogo è con loro più che con i ragazzi. Quindi è sempre lo solito discorso che loro alla fine si appoggiano all’educatori e non creano gruppo, un gruppo vero proprio” (I think he at least enjoys the relationship with the activity leader. Because effectively it seems to us 282

that the dialogue is with them more than with the kids. Therefore it is always the same discourse that they in the end lean on the educatori and do not make a great, a real and true group).

For other parents, however, this pattern was not a problem. It was still nice to know their child was interacting with others, especially peers. Parents occasionally referred to staff and therapists, especially educatori, as amici. The relationship could be read as analogous. One parent at a Residential Center explains, “Non lo so come l’ha preso. Io penso bene. Perché proprio un po’ si è trovato a vivere con dei ragazzi della sua età. Cone delle ragazze giovani, perché le educatrici comunque avevano pochi anni più di lui” (I don’t know how he has taken it. I think well. Because really a bit he has found himself living with youth of his own age. With young women, because the educatrici at any rate are not many years older than him).

In addition to friendship, parents at Social/Recreational Groups also talked about other benefits related to feeling supported and understood, “non presso in giro” (not teased), and that “alla fine non sei solo” (in the end you are not alone). Certain activities provided explicit opportunities to discuss their lives. As one parent explains, “Perché il fatto di poter discutere… fino all’anno scorso c’erano film, temi corretti, adatti a loro, nel senso che parlavano delle loro difficoltà, delle loro fragilità, delle loro… quindi poi quando aprivano una discussione” (Because the fact of being able to discuss… until last year there were films, correct themes, adapted for them, in the sense that they talked about their troubles, their fragility, their… therefore then when they opened a discussion).

One mother of an adult at a Residential Center expressed a similar sentiment. She told me about a previous service that her son attended, telling me that it was “unfortunately” 283

mixed disability. I asked her why, and she said, “perché magari potevano legare, aiutarsi l’uno l’altro. Scambiare qualcosa, in modo loro ma magari scambiare” (because maybe they can join together, help one another. Exchange something, in a way that maybe they can exchange). The next chapter turns to the experiences of youth themselves.

Conclusion

This chapter has addressed research questions (1) and (2) as they relate to a second respondent group: parents of adolescent and young adult children with autism spectrum conditions. With respect to the conceptualization of autism, it finds that parents defined autism in a wider variety of ways than professionals, though still often related to the characteristics of the DSM-IV. That idea that people with autism were “in their own world” was especially salient for parents. When talking to their children, parents often described autism within the framework that we all have strengths and weaknesses. With respect to the way autism should be managed, this chapter shows that parents searched for competent experts to care for their children, but did not necessarily become experts themselves. This finding will become relevant in Chapter 7 as well, as it relates to new biopolitical theories about patient/parent versus professional expertise.

Parents, like professionals, spoke a lot about their expectations for their children based on a life cycle. Many parents talked about their goals for services related to a time

“dopo di noi” (after us, i.e., after we can no longer care for him or her). Parents searched for “un po’ di tranquilità” (a little peace) for themselves and their children in adulthood.

Parent naratives further reinforce my argument that these narratives about the life cycle of people with autism can challenge and improve the anthropological definition of adolescence by defining adulthood as an amalgamation of materials and roles to which all 284

individuals have a right based on the standard of their peers and society (Cascio 2015b).

These insights provide an in-depth look at parents’ experiences and evaluations of autism-specific services. This chapter has outlined parents’ goals for their children’s participation. In the next chapter, we look at youth’s experiences and shed some light on whether or not these goals were reached.

285

Chapter 6: Youth with Autism

Chapter Overview

This chapter addresses the experiences of people with autism themselves. It presents data collected through participant-observation, interviews with parents, and individual and group interviews with people with autism themselves. Like Chapters 4 and

5, it addresses research questions (1) and (2) and is divided into two main sections.

Section 1, “What is Autism,” attempts to unpack the meaning of autism and

Asperger’s for people given this label. It begins by noting that for many participants on the spectrum, the diagnosis of autism was in fact not meaningful, for various reasons. It then delves into the way people on the spectrum defined autism or Asperger’s and what characteristics or traits they identified with the diagnosis. Many parents and professionals doubted that people with autism who had higher levels of support needs were even aware of the idea of “having autism.” This possibility is also discussed, along with its methodological implications.

Section 2, “Interfacing with Services,” discusses youth’s experiences in services.

It recaps parents’ goals for their children’s participation from Chapter 5 and adds to it the youth’s individual goals. Social goals such as friendship and social interaction were most common, and this section considers whether these goals were accomplished within service settings. It describes participants’ relationships with staff and each other, demonstrating that participant-staff relations often seemed to be the most important. This chapter also discusses youth’s evaluations of professionals and services as raised in individual and group interviews.

Taken together with Chapters 4 and 5, this chapter provides rich description of the 286

lives of people with autism and creates a strong basis on which to explore new biopolitical theory and answer research question (3) in Chapter 7.

Section 1: What Is Autism?

As detailed in Chapter 3, this study’s research design was created with the idea of investigating identity and subjectivity around autism. I decided to conduct participant- observation and recruit participants from autism-specific services because these would be sites where autism was actively the topic under consideration. I could have recruited participants and their families though hospitals, schools, the health board, or parents’ associations. However, I wanted to respect that identity is a function of the situation, not the individual (Bucholtz and Hall 2006) by looking at situations in which autism discourses were already mobilized. I chose to research in situations where autism was already central to the discourse, rather than entering into people’s homes and reifying that identity when it may not have been important to them. Furthermore, I anticipated that if I sampled in autism-specific places I would more likely encounter people who knew they had autism. Signs about autism were all over the place – at the entrances to many buildings, on bulletin boards, on documentation on the wall, and on flyers – and many people attending these centers could read.48 Many of the places I visited had the word autism in their name, which was often prominently displayed on a welcome sign or smaller materials. Moreover, at least three of the places I visited (including the two

Social/Recreational Groups) had books on the shelves that directly related to autism specifically or disability generally. While many of these books were scholarly at more for staff and parents, others were for people with autism or other disbailities themselves.

48 All of the interview participants did read. 287

Staff sometimes even spoke about autism in front of or even with the youth who attended, although how much this practice was done or even considered acceptable varied from site to site. Nonetheless, I naively assumed given the ubiquity of the term autism in these settings that at least those participants who would be able to participate in semi-structured interviews would know that autism was a “something” that they had and a reason to attend these particular services. As we will see below, this was not always the case.

Parents and staff often doubted that the youth with autism at these sites were really aware of or understood their diagnosis. The following discussion with two parents presents a range of typical concerns:

Father: But I do not know if she is aware of what she does not have, of what she lacks. Mother: She doesn’t manage to understand. F: For her [it is] her life, for her [it is] always a good life. A life – M: Yes, she has her things. F: But I do not know if she is aware that she lacks what a normal person has, see. M: Even if in reality when we go to visit her sister who has children… but not – F: - not so much. M: I do not think that she manages to understand in the sense of saying “my sister has children, has a husband, and I do not.” See, I do not think that [she has] this. Maybe with intellectual disability… F: I do not know what in her mind – M: - what she thinks - F: - what she thinks. M: Because she listens. F: She listens to everything. M: Nothing escapes her. - Interview, Parents at Residential Center

In this passage, not only are these parents not sure how much their daughter understands, they are not sure what she thinks at all, although they note that she seems happy with her life. They note also that their daughter, although she does not actively communicate much, seems to listen and understand a lot. These parents, like others, almost doubt that their children could be totally ignorant. 288

Other parents more strongly suspected their children did know, even if they did not talk about it very openly. In one interview, parents reflected on earlier interactions their daughter had had with another child with autism. Even before the parents knew the diagnosis, the child identified herself as like this other child. The mother recounted that her daughter “vedeva che girondolava, più di una volta, e lei mi ha detto ‘ma io sono come la [altra ragazzina].’ Più di una volta, più di una volta. E io dicevo ‘no, la [altra ragazzina] non parla, tu parli’ ma più di una volta” (saw that she spun, more than once, and she told me, ‘but I am like [the other girl].’ More than once, more than once. And I said, ‘no, the [other girl] does not speak, you speak’ but more than once). Even when they did not suspect autism (in large part because of this notable difference in verbal ability),

“lei la vedeva che somigliava e lei diceva, ‘mamma, ma io sono come la [altra ragazzina]?” più di una volta [...] non so perché lei si identificasse, se lei sentiva qualcosa” (she saw her, that she was similar to her, and said ‘mamma, am I like [the other girl]?” more than once [...] I don’t know if it was because she identified with her, if she felt something). Another mother explained that she knew when her son become aware of his “diversity,” his “autism” because he wrote about it, and because he went into a period in which he became nervous, aggressive, closed to others, didn’t sleep or eat well.

Another parent linked awareness with “an unhappy life”:

I am sure that he perceives his limits in part, and in part no. Well, the more fortunate part is that which he does not perceive, because for example I always thought that [someone else I know with a different disability] had, would have had such an unhappy life a little bit because he had a bad character and a little bit because he was very very aware of having limits. And this must have really … infuriated him. - Interview, Parent at Residential Center

One parent reported having heard this perspective from professionals who had explained 289

“se fosse stata meno consapevole della sua difficoltà forse [si] avrebbe potuto tirarla fuori di più, [si] avrebbe potuto magari gestirla meglio. Ma lei si rendeva conto” (if she had been less aware of her difficulties maybe we would have been able to bring more out in her, maybe we would have been able to manage her better. But she is aware). Some studies have indeed linked awareness of disability and difference with stress and psychological difficulty, though no systematic epidemiological study has confirmed as much on a large-scale level (reviewed in Ghaziuddin, Ghaziuddin, and Greden 2002; see also Shtayermman 2009).

Though for many this lack of knowledge was framed as a lack of awareness or understand, a few parents mentioned actively wanting to avoid direct discussion of a diagnosis with their children, often for fear of causing such psychological distress. For example:

The world in which we live now, I think for someone with autism, perhaps the fundamental thing is that they do not realize their diversity. Because the moment in which, in which [my son], were he to become aware that he is different from the others, it would be a lot of grief, for him, eh? And therefore it would be grief for me too. If I must think of [my son] as unhappy with autism, I would really say no. I would say, on the other hand, that in his naivety, he is really happy. The problem that I have in facing the world with my son’s autism is that I am afraid that the world does not understand him. - Interview, Parent at Residential Center

Others were happy to talk to their children about their difficulties, but not happy with how professionals talked about it. For example:

At one of the meetings with the commune (municipality) they asked ‘davanti da lui’ (in front of him) ‘ma, è autistico?’ (But, is he autistic?) Then her son said afterwards, ‘mamma, sono un mostro’ (Mamma, I’m a monster). She explained that he uses always the most powerful words, it’s his way of saying c’è ‘qualcosa che non va’ (there is something wrong). She asked him: gli altri bambini che hai visto, sono mostri? (The other children that you have seen, are they monsters?) He said no. She said then you aren’t either. But the mother was very annoyed that they spoke this way in front of her son. 290

- Fieldnote Excerpt

This same mother explained that her son is aware of his problems, particularly that he speaks more slowly than his peers, but was depressed as a result of this awareness.

Another mother described a similar conundrum she and her son encountered in the subway, when he was using his transit pass for people with disabilities to exit the turnstiles. “Non so [mio figlio] che percezione abbia della sua disabilità, non ho ancora capito” (I don’t know what perception [my son] has of his disability, I haven’t yet understood), she began. They went to the station and she told her son to take out his card, but the guard told him “no no, puoi andare” (no, no, you can go ahead). When he asked why, his mother told him, “‘ti conosce, sei già venuto con la [nome], l’educatrice.’ E pensavo questo, no? poi dico ‘sai, magari si vede, perché vedi questo ragazzo, a 17 anni, a bracetto con la mamma, che cammina sperso, capisci che è disabile no?’ obiettivamente lo capisci” (‘they know you, you came with [name], the educatrice.’ And

I thought as much, no? Then I say, ‘you know, maybe you can tell, because you see this kid, 17 years old, arm in arm with his mother, who walks lost, you understand that he has a disability, no?’ Objectively you understand). When they encountered the same situation at an unfamiliar station this first excuse could not work, and the mother explained “lì mi sono trovata in difficoltà. Cosa gli dicevo? Che ha visto che sei disabile?” (I found myself in trouble. What did I tell him? That he saw that you have a disability?” Instead she told her son that they probably just trusted him, since there are so many people, they let him go through. She suspected, however, that her son did know.

Other youth, as discussed in Chapter 5, Section 1, Subsection “Discussing

Autism” were very aware of their autism. “È consapevole” (he knows), one couple said, 291

explaining that their son already noted certain characteristics in himself by the time they discussed it:

We confirmed what he already noted, that he has these... these interests. That we made him note [that] some of his peers have other interests, that he doesn’t listen much, that he isolates himself. And then the fact that sometimes he talks to himself. Um. Let’s say I made him note his behaviors, and we reasons about those […] Uh, he says “autistic traits” because once we went to an exhibit on autism on there were these, like, these examples of behaviors of kids with autism, and he recognized himself, he said, like, he read these things, he said, “ah, but I am also like this. Ah, like how I do.” - Interview, Parent at Social/Recreational Activity Group

Another parent discussed the advantage of having a diagnosis for her son:

But yes, in a sense: I have something, I know what I have, I can call it like this, it doesn’t make me happy but at least I know what I have. I’m not deficient, because everyone always said that people with Asperger’s Syndrome are so intelligent, and he read some things, and I made him read also some books that we bought [inaudible]. So it was not very simple, maybe, but it was also not so traumatic. I think that [my son] needed to feel understood in something, that is, saying… I have a fever, I know that I have the flue and I don’t have pneumonia, so to speak. - Parent at Social/Recreational Activity Group

One youth pursued his own diagnosis as a teenager:

Honestly, when I was 14 years old I self-diagnosed myself as having Asperger’s syndrome. But I kept going to this psychologist, I was thinking I had something else. In fact, I went to the psychologist more times to guarantee that I had Asperger’s syndrome. I had written on a piece of paper my possible, let’s say, syndromes. I had written that I could have either obsessive-compulsive disorder or Asperger’s Syndrome. So I went to the psychologist about a year ago and I asked him, “but in your opinion, do have obsessive-compulsive disorder?” and he told me, “no, absolutely not.” And like this I understood, like this I excluded one of the two possibilities that I said, so, I have Asperger’s Syndrome because when I was 14 I had already started… I had already made the hypothesis that I had obsessive-compulsive disorder or Asperger’s Syndrome. And then when I was 17 I had the confirmation of Asperger’s Syndrome [….] In fact as soon as the psychologist told me, “you have Asperger’s Syndrome,” I smiled. Yes, because I was happy that I managed to diagnosis this thing by myself. - Interview, Youth at Social/Recreational Group

The phenomenon of self-diagnosis was rare among my participants (this youth being the only one), but the practice is not unheard of in Italy (Cola 2012; Valtellina 2011). 292

As discussed in Chapter 3, I identified potential participates through the staff.49

Staff identified not only which participants had autism, but which might be good candidates for an interview based on their communication skills and styles. Only at three sites (the two Social/Recreational Groups and one Day Center) were such interviews possible. The staff at three of the remaining sites explained that the majority if not entirety of their participants would not have the skills to complete such an interview, which was narrative and open-ended, paralleling interviews with professionals and parents. This is not surprising given that the autism-specific day centers in my fieldsite were classified as centri diurni disabili, not centri socio-educativi, and were therefore attended by people with autism with higher levels of support need (see Chapter 2 for an overview of different service types). Staff stressed that even those who were quite open and verbal may not be able to participate in an interview. Indeed, I was often struck at how easily conversation flowed with certain youth when that conversation was on the topic of the youth’s choice, yet abruptly stopped when it turned to another topic (or when

I, being a second language speaker, asked a question that made no grammatical or contextual sense). One interview went this way, in which the participant declined to respond to most questions (as participants were informed they were allowed to do at any time) yet struck up an engaging conversation with me about the mechanics of my audio- recorder partway through.

At the final site, the coordinator I met with thought that at least a few participants might be able to do an interview, but was concerned that the questions about autism

49 Once a parent disagreed with the staff evaluation that the child could not participate, but I followed the staff’s determination per my research protocol and did not conduct an interview. 293

would be too indelicate to ask. Certainly it would be possible to do another type of study including people with autism as active research participants – a customer service type survey, for example (e.g., Ruef and Turnbull 2002). However, the central topic of this dissertation is the nosological entity of “autism” – how it is defined, managed, and experienced – and I therefore limited my sampling to interviews with people with autism about autism.

As with parents (Chapter 5), not everyone I interviewed ultimately identified themselves as having autism despite agreeing to be interviewed about it. Two youth interviewed told me about autism as the name of the physical location of the service they attended. This finding tie into a recent study in the United States by Jones (2012), who asked youth with a variety of intellectual and developmental disabilities, including autism, to talk about themselves, terms related to intellectual disability, how they know whether someone has a disability, and if they or any of their friends had disabilities. She found that youth with intellectual and developmental disabilities but no physical limitations often identified disabilities are related to physical capacity.50 Only 55% of participants with intellectual and developmental disabilities in this study identified themselves as having a disability. The presence of youth in my study who did not identify as having a disability is not surprising in light of these findings. Although my sample is far too small to be comparable with Jones’s sample of 51, replicating this study in the

Italian context could answer some interesting questions about the perspectives of people with disabilities working and living in disability-focused contexts on the concept of

50 Similarly, one youth at a day center, according to the parent, reportedly complained at times that she did not want to go to the day center because “there are sick children and I am not sick.” 294

disability. How might these youth’s experiences and perceptions differ from Jones’s U.S. participants, and between different contexts (inclusive schools, mixed-disability settings, autism-specific settings)?

Seven of the ten youth who participated in either group or individual interviews did talk at some length about the concept of autism. Like parents, there were those who contested the diagnosis.

Well first I was diagnosed as a… as, uh, depressed. Then even before as Asperger. Before I had attention deficit. Before that they thought I was downright autistic. Before they thought I was a psycho, and before they thought I was anxious, and before they thought I was neurotic [….] I wonder what they will think I am next! - Interview, Youth at Social/Recreational Group

This participant identified himself as a having a different diagnosis, though he was identified by staff and parents as having an autism spectrum condition (autism or

Asperger’s), and participated in services specifically dedicated to those groups. Another wavered a lot on his diagnosis, linking his difficulties most to physical health problems.

He told me, “Io siccome non ho un autismo grave non ho difficoltà” (Since I don’t have serious autism, I don’t have difficulty) like others he knew and described. “Dialogo tranquillamente con te” (I talk easily with you) and with others at the services he attended. Indeed, the Asperger’s label importantly gave some youth a reason to attend services, even if they remained ambivalent about their identification with it. This youth explained, “io in questa fascia qua non rienterei nella fascia degli Asperger. Abbiamo detto che ero Asperger però era un modo per farmi ammettere al [servizio]” (In this category here, I am not part of the Asperger’s category. We said that I had Asperger’s but it was a way to let me into the [service].” Two participants mentioned that the term

“Asperger’s” struck them as particularly useless. The suspected doctors gave people this 295

diagnosis when they did not know what else to do. They noted a wide range of symptoms and the fact that people with the diagnosis were very different from one another, noting

“non esiste neanche una sindrome di Asperger. Funziona ognuno in un modo diverso”

(there doesn’t exist one Asperger’s Syndrome. Every person functions in a different way). The diagnosis of Asperger’s became “la cosa più generale di tutte” (the most general thing of all). The following excerpt from a focus group demonstrates differing perspectives. Two of the youth bounce off of one another, explaining in detail these doubts about Asperger’s, then a third jumps in to say that he does, in fact, have something to say about what he sees as his characteristics as a result of Asperger’s.

R2: In my opinion, Ariel [...] Asperger’s Syndrome does not exist. That is, someone that is defined as different from the others or in practice they do not even know what they are talking about any more, they say he has Asperger’s Syndrome. I sincerely do not believe that I have Asperger’s Syndrome51 also because if (you go to read) the symptoms of Asperger’s Syndrome, practically the whole world has Asperger’s Syndrome. Given that there are (so many) symptoms, 50 symptoms of Asperger’s Syndrome. R3: [….] Everything that is not a symptom of something else and even some which are symptoms are something else are symptoms of Asperger. R2: If you are too smart you have Asperger’s Syndrome [….] If you do poorly in physical education, you can have Asperger’s syndrome. If you look people in the eyes when you speak, you can have Asperger’s syndrome, if you do not look at them, you can have Asperger’s Syndrome. If you are a geek you can have Asperger’s Syndrome. You can have Asperger’s Syndrome for anything. R3: If you are disorganized you have Asperger’s Syndrome, if you are too organiz--- If you are methodical, you have Asperger’s Syndrome R2: If you write poorly, you have Asperger’s Syndrome. Anything. I really believe that I… do not have Asperger’s Syndrome. I – R3: If you have interests, if you have some interests, if you have interests that are very part-, if you have particular interests that you like more than other people do, you have Asperger’s Syndrome R4: Look – R2: Yes, if you don’t like to bond with other people because you simply consider them inferior to your own intellectual level and so very stupid as to not understand anything that you do –

51 At other times, this participant does state that he has Asperger’s and identifies quite strongly with the term, further demonstrating the performative, flexible, and interpersonal nature of identity. 296

R3: […] You aren’t Asperger, in that case if (inaudible) because you consider others inferior to you, you are simply a sociopath. R2: But I am considered Asperger. And just because, (someone) gets taken to a psychologist from childhood, but just because, like, you don’t like going out with the other children or you don’t… you don’t want to do things, you don’t follow the rules very well, etc. R3: If you have an opinion that your parents don’t like, you get taken to a psychologist and (they won’t rest until they classify you) as something. Given that there is no pathology for classifying just a different opinion, you end up classified as Asperger because the psychologists, being at any rate of the doctors, have professional information that is pathological enough that they must classify everything like (a common series, they put) labels on everyone. Already with everyone (inaudible) they stop considering patients as people, just as piles of symptoms. A: R4, what do you think? R4: What? R2: In fact, like when R3 said it, I also feel like a new human species, I have also had this thought. Of being a homo sapiens sapiens sapiens. A new species of human being. R4: R2, excuse me. A: Thank you for the comments, but yes, wait for R4. R4: Thank you, Ariel, but personally [I would define it as] a mania for certain things, for example I like war themed video games, films, especially those of Mel Gibson. - Youth at Social/Recreational Activity Group

The last lad goes on to describe his special interests, his anxiety and related trouble sleeping, and accusations by his father that he is clumsy and disorganized. The final participant in this focus group added yet another perspective, explaining “io invece penso di non essere molto Asperger” (I on the other hand do not think I am very Asperger).

While he acknowledged that he does not always look people in the eyes when they talk, he stated, “Per il resto... non sento proprio Asperger perché, boh, sono normale” (For the rest… I don’t really feel Asperger because, I don’t know, I am normal). He explained that there were those who were “more Asperger-y” than him.

The definition of autism could also be contested dialogically. In the focus group excerpt above, one participant tells another that the trait he describes is not Asperger’s 297

syndrome, but sociopathy. At another point he tells the same youth that his special interest is not “being autistic” but rather “being a nerd.” In an individual interview, another youth talked about having autistic traits, but not pure autism. This youth further explained that he saw himself as “normal” and wanted to be seen as such. Three of the youth specifically explain that they see themselves as normal, therefore taking a perspective against a deviance narrative of autism as something which makes them not normal as people, though they might draw from a deficit narrative i.e. there are things I am bad at (Jones 2012). Particularly for these highly verbal, “high functioning” youth,

Asperger’s syndrome and autism more broadly did represent a set of characteristics that could be applied to them, or not, and negotiated.

One Social/Recreational Group focused specifically on Asperger’s. Although

Asperger’s was not commonly the central topic of conversation, the youth did occassionaly bring up Asperger’s spontaneously. Sometimes they joked about it. Once, a volunteer asked a youth several times in English, “Please sit down.”52 He replied, “no, non sit down, sono Asperger.” (No, not sit down, I'm Asperger!) and again, “Io sono

Asperger, non Down.” (I'm Asperger, not Down!). From time to time, youth also mentioned that a particular famous person had Asperger’s:

[We were playing Trivial Pursuit, and agreed that one boy would create all the questions rather than read those provided by the game.] The question posed to [one boy] regarded an actress who consistently messed up a certain line. [….] We learned it was Marilyn Monroe. [….] [Another boy] said she had sindrome di Asperger (Asperger's Syndrome). [Fieldnote excerpt]

52 This sort of switching into English was somewhat common in this context, at least when I (a native English speaker) was present. 298

During dinner one night, four of the young men were discussing Disney and we had the following exchange:

Boy 1: Era autistico. Me: chi? Boy 1: Disney. Boy 2: era un Asperger? Boy 1: Si. (Boy 1: He was autistic. Me: Who? Boy 1: Disney. Boy 2: He had Asperger's? Boy 1: Yes.) At times, youth made spontaneously self-reflective statements regarding their particular difficulties that were not joking:

[One of the girls] showed us at [the game table] cell phone pictures of her dog. She said lui è molto simile a me (he's very similar to me). [An older adult participant asked]: in che senso? (In what way) [She replied]: ha difficoltà integrare con suoi coetani. Non sa relazionarsi con gli altri cani. (He has difficulty interacting with his peers. He doesn't know how to relate to the other dogs). [Fieldnote excerpt]

[One of the girls started remarking on the behavior of a child nearby]. [She] leaned over to me and started saying in low tones that maybe he didn’t understand, because sometimes loro non capiscono quello che non è la loro fascinazione divertente al momento. Anche me, quando ero piccola, ho avuto questa esperienza [….] ho difficoltà di capire con due sensi allo stesso volta.(they don't understand what is not their current entertaining fascination. When I was small I also had this experience …. I have trouble understanding with two senses at the same time). [Fieldnote excerpt]

A staff member came over and the conversation continued. The young woman made her connection more explicit, saying, ‘Quello che è Asperger è quello che ha difficoltà parlare quando ha i emozioni’ (People with Asperger’s have trouble talking when they are emotional). In these situations not only did youth spontaneously address their difficulties or their diagnosis, they were able to talk with older mentors – staff/volunteers, people with autism, or people with family 299

memebrs with autism.

The other situations in which explicit discussions of Asperger's or autism arose were in introductory meetings with potential new participants, and in the specific situation of a conflict between two people that one of the staff often tried to mediate through explaining to one person how the other person's autism caused him certain difficulties that helped fuel misunderstanding. Parents and staff in Day and Residential

Centers also talked about mediating conflict between attendees, but they did not draw on an autism discourse to explain the other person’s behavior. In contrast, they drew on the narratives discussed in Chapter 5, that everyone has certain strengths and difficulties.

They might use this idea to identify similarity, i.e., you have certain difficulties and need certain; he has certain other difficulties and needs a certain other type of help.

These examples, especially the focus group, show a great diversity of perspectives even within the same group. Some youth did not identify autism as a word that applied to them at all, while others described in a lot of detail what the term meant as it described them. Some youth understood and doubted the validity of the Asperger’s label, whereas others found it useful. These perspectives changed between participants and also over time. As one mother explained of her son some years back, upon first hearing the diagnosis of Asperger’s, she and her then-teenage son both went to the internet to read about it. She explains:

I immediately recognized him in it. He saw himself in it less. I understood, yes it is true, almost all of it is him. Look. And he on the other hand had more trouble. Now no. Now he exaggerates the other direction. He is making, he made a short film because from, that he will show at a stadium, about Asperger, he’s in it, it’s something in short (laugh) rather public. - Interview, Parent at Social/Recreational Activity Group

While the issue of autism-as-an-identity will be discussed in depth in the next chapter, it 300

has been by goal in this section to have shown the great diversity and disagreement between participants about its meaningfulness to them as individuals with certain characteristics.

Both for those who rejected that they had autism and those who identified with it, what were these characteristics of autism? They were quite varied. Only in the focus group and one interview were all three characteristics of the Wing-Gould Triad listed.

Social interaction was listed in five sources, stereotypical and repetitive behavior and interests in five sources, and social communication including the fact that some people with autism do not speak was mentioned in three. Table 15 below lists the most commonly mentioned additional traits. There were also several traits discussed only by one participant or only in the focus group, which included physical traits (such as early balding), close-mindedness, indecisiveness, a bad memory, naivety, “undervaluing” other people, difficulty reasoning, attention problems, detachment from reality, being disorganized, and having dysgraphia. It is worth noting that three participants talked at length about other people’s traits, but not so much their own. Unsurprisingly, however, two of these youth were those who contested the applicability of the diagnosis for themselves.

Table 15: Commonly Referenced Characteristics of Autism (Youth)

Characteristic References in Interviews and Fieldnotes Motor Difficulties, Clumsiness 4 Behavior Problems (aggression and 2 violence) Anxiety 2 Especially Intelligent 2 Nerdiness 2

As the table shows, there were very few recurrently important characteristics, and 301

participants experienced their autism in very different ways. Two participants specifically drew on a “difference” discourse to describe autism. As one youth explained, “Voul dire un modo diverso di funzionare rispetto alle altre persone” (It means a different way of functioning compared to other people). One way to frame this difference that was important for several youth was the discourse of “nerdiness” (they used the English word). As other scholars, popular culture observers, and self-advocates with autism have noted (Hacking 2009a; Jack 2014; Jackson 2002; Silberman 2001), there is a lot that is

“nerdy” or “geeky” about autism. In fact, in 2011 while I was conducting a pilot study and using Google Translate to render an Italian article’s abstract in English, the translator tool provided the English “geek” for the Italian “autistico.” Many of the youth I knew had interests that were traditionally “nerdy” or “geeky” such as video games and anime/manga. Although most youth did not identify themselves to me as “geeks” or

“nerds” there was a small group who did. When asked about characters or personalities in the media (TV, books, and film) that they found similar to them, those in the focus group listed several real and fictional figures ranging from Albert Einstein to the Big Bang

Theory’s Sheldon Cooper, telling me that they are similar via “Nerd Power!” Indeed, my own interest in “nerdy” things helped me build rapport with the youth. On my very first day at one Social/Recreational Group, many of the boys bombarded me with “do you know…?” questions, including such pop culture references as Simpsons, Space Balls,

Nostalgia Critic, Salad Fingers, and Dragonball Z. As I mentioned my knowledge of one particular series, one of the youth turned to another and told him, ‘she is nerdy, like us!’

Shortly thereafter, he explained to me, ‘Asperger’s is genetically nerdy.’ I was able to build rapport with youth at both this and the other Social/Recreational Group through my 302

familiarity with many of these favorite topics. My knowledge of comic books both U.S. and Japanese also helped me have a point of reference for conversation with youth at day and residential centers. One youth also spoke highly of a particular teacher, saying, among other things, “è diciamo una specia di nerd anche lui che guarda star wars ecc.

Mi ha fatto fare tutto un tema su star trek ecc quindi si è... molto, diciamo, ci capiamo molto” (He is, let’s say, a type of nerd also, who watches Star Wars, etc. He made me do an entire essay on Star Trek, etc., therefore … let’s say, we understand each other a lot).

In Anglophone literature, autism emerges as a key example of a “brain disease,” especially for people thus diagnosed (Buchman, Illes, and Reiner 2011; Ortega 2009;

Ortega and Choudhury 2011). Most participants in this study did not mention their brains

(as discussed more in Chapter 7), but focused on their interests, feelings, or relationships.

The implications of the diagnosis for autism rested, for these participants, in the social consequences. Three themes emerged. Firstly, participants talked about autism as a balance of strengths and weaknesses. Secondly, participants talked about their fear in terms of others not understanding them (more than anything about autism itself). Thirdly and related, participants talked about experiences with bullying or teasing.

As we saw in Chapter 5, I asked parents how they described the characteristics or difficulties of their child to their child him or herself, if they talked about it. Parents described many conversations in terms of relative strengths and weaknesses, explaining that we all have things we are good at it and things we are less good at. Two youth gave me similar explanations, one talking about how “ognuno ha proprio carattere” (everyone has their own character) and another explaining that a trouble with autism is that “forse non riesco a capire bene che ho un po’ di difficoltà su alcune cose, anche se su alcune 303

cose sono molto esperto” (maybe I do not manage to understand well that I have a little trouble in some things, even if in other things I am a real expert). Two youth (including one of those just quoted) told me that having Asperger’s was similar to having any physical characteristic, listing examples such as eye color and hair color. One of these youth specifically attributed this definition to his parents, explaining that his family sees it this way. Another youth described Asperger’s as “not a psychological profile” but a

“character,” explaining, “è come dire quel ragazzo è simpatico, quel ragazzo è antipatico, quel ragazzo è Asperger. Per me è la stessa cosa” (it’s like saying that guy is nice, that guy is rude, that guy has Asperger’s. For me, it’s the same thing). In this formulations, autism works like any other characteristic: it is something they may be or have, but only in so far as any other attribute.

When I asked youth their greatest fear, they told me not about the way autism affected them, but the way it affected other people’s behaviors towards them. As one young man at a Social/Recreational Activity Group explains, “Uh, ad esempio, mm, non so, il fatto di non essere accettato da alcune persone per quello che sono. Cioè, alcune mi accettano, magari altre no” (Uh, for example, mm, I don’t know, the fact of not being accepted by other people for what I am. I mean, some accept me, maybe others no.)

Another young man at this group told me, “Mi fa paura che la gente pensa che io sono diverso in senso negative, ma secondo me, io sono diverso in senso positivo” (I am afraid that people will think that I am different in a bad way but in my opinion I am different in a good way). A teenage girl at a Social/Recreational Activity Group, when asked if

Asperger’s caused her any problems, told me, “Sì perché ecco un po’ [sono] stata capita, perché avevo paura di non essere capita” (Yes because, look, a little [I am] understood, 304

because I was afraid of not being understood). Parents also echoed this fear, as in the parent at a residential center who stated, “Ma mia paura più che altro è che non venga capita” (my biggest fear is that she won’t be understood).

Relatedly, youth related their experiences not being understood, and being

“scherzato” (teased). One youth explained, “Mi sento escluso per il fatto che io sono asperger e gli altri non ne sono” (I feel excluded because I have Asperger’s and the others do not). Moreover, “spesso sono scherzato [...] perché non mi sento considerato dagli altri. Questa mi fa sentire male” (I am often teased […] because I don’t feel considered by the others. This makes me feel bad). He explained his problems at school, where he often met “persone pochi intelligenti [...] quando sbagliavo, loro anziche farmi notare tranquillamente mi hanno fatto da notare in maniera sgarbata, insultandomi”

(people of low intellect [...] when I made a mistake, instead of simply telling me they let me know in a garbled way, insulting me). They called him “handicappato”

(handicapped). He was also teased out of ippoterapia (horse therapy). With the help of his parents, he ultimate switched “sections” at his school and took new courses with new classmates. He explained, “veramente la mia vita è cambiata. Ho conosciuto persone nuove e più sociali, più intelligenti. Infatti scherzavano un po’ ma non in maniera pesante, in maniera arrogante. Invece loro gli altri facevano” (truly my life changed. I met knew people, more social, more intelligent. In fact they were joking a little but not in a serious way, in an arrogant way. Instead those others did).

Parents describe similar experiences their children encountered. One mother recruited from a Residential Center was called into school by her daughter’s teachers, who told her that her daughter had thrown a rock at another child. This mother explained 305

“secondo me [figlia] quando faceva le cose, c’era un qualcosa dietro. Non la faceva così.

Che poi non fosse la reazione giusta, quella di lanciare lo sasso, ma se l’aveva fatta, io mamma sapevo che c’era stata qualcosa. Che non era giustificabile però... e mi dice,

‘questa bambina, mi dice, che sono, continua a dirmi, mi scherza handicapatta.’” (In my opinion, [my daughter], when she does things, there is something behind it. She doesn’t act like this. It’s not the right reaction, throwing a rock, but if she did it, I as a mother know that there was something. It’s not justified but… and she told me, ‘this child told me that I am, she keeps telling me, she teases me as ‘handicapped’). Another mother recruited from a Social/Recreational Group complained that the other children at school

“capendo che lui ha dei problemi, lo allontano. Lo prendono in giro e lo mandano via, proprio tante volte gli dicono ‘vai via, tu, che sei handicappato’” (understand that he has problems and distance themselves from him. They pull his leg and send him away, really very often they tell him ‘go away, you, you’re handicapped’). Finally two youth recruited from Social/Recreational Groups also complained that having a diagnosis made it harder for them to get a driver’s license, which was a point of particular annoyance and clearly linked to life cycle milestones.

I asked youth what causes autism when feasible. Only in three individual interviews and in the one focus group did youth clearly53 discuss the causes, and their responses offer very little consistency. Two youth talked about autism as caused by social construction, as they describe in the focus group excerpt above. Other causes were suggested only once: genetics, the social environment, and “I don’t know.” One youth

53 In one interview, the youth responded by pointing to answers on the sheet. Because my writing made him uncomfortable, I did not note this answer by writing and it is impossible to tell on the transcript. 306

specifically rejected the idea that vaccines cause autism.

Sex, Gender, and Sexuality

As noted in Chatper 2, autism spectrum conditions are diagnosed far more often in men than women. Studies consistently find four to six times more males with autism than females (Baio 2012; Fombonne 2003; Fombonne 2005), with the ratio even wider among people with higher levels of support needs (Fombonne 2005). A few professionals even noted to be that from their experience, they suspected an even wider gap than these reports. Youth did not often talk to me about their gendered experiences directly, although they did sometimes talk about their sexuality (discussed below). However, on a community level, the consequence of a predominantly male and masculine group of young people, I would argue, potentially leads to autism spaces being gendered as masculine spaces. As quoted above, some participants linked autism and Asperger’s with a “nerd” identity. Although women most certainly can and do identify as nerds (as do I),

“nerd culture” has been associated with masculinity,54 whiteness,55 and their intersection

(Bucholtz 2001; Eglash 2002; Kendall 2000; Kendall 2011; Quail 2011). Explicit trappings of “nerd-dom” could be found at two of the sites in which I worked – superhero films, scifi/fantasy themed games, manga and comics on the bookshelves. “Nerdiness” in other sites may have been less institutionalized and limited to the possessions and favored topics of only a few attendees. Other sites had more traditional non-nerdy media – largely

Disney and Pixar. As mentioned in Chapter 4, at least one staff member was firmly against childish trappings. Other adult but not necessarily nerdy media included car

54 For insight into high-profile problems around nerd masculinity in the United States, see Arthur Chu (2014b; 2014a; 2015) 55 Popular representations of autism in the Anglophone world also association autism with whiteness (Heilker 2012). 307

magazines, still traditionally a masculine interest. These nerdy and mechanical interests and activities may code spaces as more masculine and create barriers for women who lack these interests to be as included. However, most pursuit of interest and entertainment was done solo, so I did not observe this effect.

The difference that I observed emerged in Social/Recreational Activity Groups.

One group did not have as large a gender gap (perhaps due to being the most inclusive with respect to diagnosis – including more people without autism spectrum conditions).

This service split the participants by sex. The other, however, had an overwhelmingly male clientele. The organizers and parents spoke openly about the gender gap and tried to facilitate friendships between the few women present (even going out of their way to introduce new women to me, as a woman in this masculine, nerdy space).

Another organizer spoke at length about the gendered dynamic of social interaction, namely the way some of the boys in their late teens and early twenties persisted in attempting to engage some of the girls in conversations on sexual topics.

Indeed, as a 24 year old woman (“geek girl”) myself, I was keenly aware of the potential sexual/romantic tension in the space. It felt very similar to the “nerdy” peer groups I had frequented in the United States. I took steps to appear both masculine and unavailable.

Like some of the women who participated and volunteered, I was aware that some youth hugged and kissed us goodbye, but not necessarily the men. The experiences of girls and women were therefore shaped by the way that these spaces could be read as men’s spaces.

To confuse this discussion further, however, caretaking was often gendered as feminine. Although both men and women served as staff and volunteers, a good deal of 308

these figures were women and caregiving in general is often coded as feminine (Abel and

Nelson 1990; Rosaldo and Lamphere 1974). Spaces more focused on assistive care (day centers and residences) may therefore not be as masculinized despite the predominantly male group of attendees, due to their focus on caretaking.

What about sexuality? Two of the youth I interviewed spoke about the idea of having a girlfriend, but ambivalently, pondering if it was worth the trouble. Other youth discussed girlfriends, having them or not, in casual conversation. Staff and volunteers sometimes spoke to youth about these relationships, attempting to model or explain good behavior.

Staff and parents were more concerned with solo sexuality. Not much literature addresses this issue at all (for exceptions, see Koller 2000; Melone and Lettick 1983;

Nichols and Blakeley-Smith 2010), and one parent specifically lamented that Italians lack the option of “northern” Europeans with disabilities to patronize professional sex workers. Nonetheless, there were times in which the staff were concerned to communicate to the youth some version of the lessons described in the literature – that it is okay to have private time (for masturbation) in private places such as a bathroom or bedroom. Staff also addressed self-care with women, including menstrual care and hair removal.

In short, autism is masculine and nerdy, which is itself masculine, making autism spaces potentially men’s spaces. Men’s and women’s experiences in such spaces should be understood accordingly. The next section turns to youth experiences in these spaces.

Because I interviewed almost exclusively men and boys, the perspectives I present should be understood as such as not necessarily generalizable to women’s and girls’ experiences. 309

Section 2: Interfacing with Services

In this section I will recap parents’ goals for services and add youth goals to that list, then explore whether or not these goals seem to be enacted in participants’ daily lives. I draw from youth interviews as well as observations from staff, parents, and my own fieldnotes.

In Chapter 5, we saw parents’ goals for their children included gaining skills and being occupied; being content and having somewhere to be “dopo di noi”; and social goals of making friends, interacting with others, and being supported and understood.

Youth raised additional goals including: becoming a better person, improving the service, spending time with other people who have Asperger’s, finding people with shared interests, and talking with psychologists.

Being Occupied

Youth discussed their experiences with gaining skills and being occupied. Many youth, as reported by their parents, referred to the services as school. Others considered it more like work. In one particularly revealing instance, a youth wrote a note to his father explaining why he was upset with him that day. In a fieldnote excerpt, I paraphrased the note:

Dad, I’m sorry for how I behaved last night. I don’t like telling lies. Dad, I am mad at you because you said I was fired. I was not fired. I work at the Center. I go the Center every day and the Center is my job. Please, don’t tell any more lies. - Fieldnote Excerpt

These examples show that youth often equated services with other forms of being professionally occupied during the day – school and work. As discussed in Chapter 5,

Day Centers were structured not unlike work in some ways, with fixed arrival and departure times, desks, and areas dedicated to different tasks. Youth also discussed 310

specific skills they wanted to build, such as learning to follow when others explain and pursuing sports. Some youth also talked about particular skills they would like to develop, such as by having the service offer courses in writing and informatica (computer science).

Beyond skill building and professionalism, youth at social/recreational activity groups also valued having fun and having somewhere to go. One youth explained,

“Anche perché la domenica non saprei cosa fare se non vengo a giocare” (plus, I wouldn’t know what to do on Sundays if I didn’t come here to play). As discussed in in

Chapter 4, some youth found the diagnosis of Asperger’s or autism useful for getting access to services that allowed them to get out of the house, have fun, and meet people – even though they did not personally find the diagnosis that applicable to them or that useful in terms of identity. They still valued the place, particularly at Social/Recreational

Groups, which provided them a space to meet with peers, engage in shared interests, gather to go on guided outings to city or countryside attractions, and maybe make new friends.

Dopo di Noi

For the most part, youth did not share parents’ concerns with the “dopo di noi.” In one potential exception, a mother explained:

I think that, I think above all of what the Doctor [last name] says, about “after us.” About “after us.” Because [my son] told me the other say, we were talking about the dead, because over the course of three years I lost my husband, my father, and my mother. And he was like, he said, “mamma, then you will die too” and I said “[son], you know what happens when you get old, then you die.” He looked at me, he was like, “what do you mean, that I’ll be alone?” How do you respond to that? And I said, “[son], you have so many friends, so many people that love you so much, and that will replace in part what… I won’t be able to give you.” But these questions leave me with a strained heart. - Interview, Parent at Residential Center 311

Satisfaction with Services

All of the youth I interviewed reported being content, even if a few had complaints. Of course, I did recruit youth from these services and so, as with parents, there is a possibility of selection bias. Even in one of the most negative statements, the youth couched his criticism in praise:

One of my psychiatrists told me about it. I went and I found it, I found it good. Then I started to be pissed because I realized there were, there was a shitload of problems no one wanted to face, then I said “why am I, why do I get pissed? This is a good place. There are people I like. I could use my superior intellect to make it a better place.” I am still trying to. - Interview, Youth at Social/Recreational Activity Group

Indeed, a few youth did complain about what they perceived to be a lack of organization.

Youth also expressed social complaints. In these complaints, a potential criticism emerges that the services are in fact not actually specific enough to their needs. One youth complained about the mix of participants across a broad range of the spectrum at a social/recreational activity group. He repeatedly expressed concern about the difficulty of finding a game that works for all people present and does not make anyone who has more difficulty feel excluded nor anyone who has less difficulty feel bored and agitated. He concluded it would be better to be split up, so people could engage in the games at their own levels. Parent reflected on this concern as well, as explored in the section of Chapter

5 that addresses concerns about services. In a similar vein of interpersonal complaint two youth (at the same site) complained specifically about another attendee, which transitions us into youth relationships.

Youth Relationships

Every site had people who had affective relationships with each other, in pairs or groups. Sometimes the youth described themselves as friends. Sometimes staff described 312

them as especially close. Sometimes youth had particular ritual or nearly ritual interactions that staff saw as friendly (and to me certainly seemed so as well). In this section I touch upon the variety of relationships that youth had with one another, but I want to stress that these relationships were in many ways idiosyncratic – it was by no means the case that all youth were friends with each other, as the complaints about specific peers make clear. Please note that this section, and my research, focused on relationships within the context of the services I describe, not all relationships that people with autism have. Therefore, I did not ask about relationships with family members or with friends outside of the service, although some youth did talk spontaneously about these important bonds. This section asks if the services themselves were places were youth formed friendships and relationships. As such, it touches on the potential for

“biosociality” in these groups, addressed more explicitly in Chapter 7.

At day centers, there were some youth who seemed to get along particularly well.

A staff member once told me of two ospite that ‘they are friends enough, he is enamored of her.’ There were pairs that had their own sort of call-and-response exchanges which seemed to be pleasurable to them, though often confusing to outsiders.56 Relationships at residential centers were similar, with the added dimension of cohabitation. Parents told me about particular other residents their verbal children would mention frequently – sometimes residents who particularly agitated them, but at times also residents they

56 I am reminded of Oliver Sacks’ (1998) chapter, “the twins,” in which he describes 26 year old twins who have held various diagnoses, sometimes autism. Sacks (1998:201–202) writes, “They were seated in a corner together, with a mysterious, secret smiles on their faces, a smile I had never seen before, enjoying the strange pleasure and peace they now seemed to have. I crept up quietly, so as not to disturb them. They seemed to be locked in a singular, purely numerical, converse. John would say a number – a six-figure number. Michael would catch the number, nod, smile and seem to savour it. Then he, in turn, would say another six-figure number, and now it was John who received, and appreciated it richly.” 313

seemed to be fond of and want to see.

At Social/Recreational Groups, the closest of these seemed to be relationships where people saw each other outside of the group meetings themselves. As one youth explained, “ho fatto stretta amicizia con un ragazzo qui, adesso lo sto frequentando spesso” (I made good friends with a guy here, now we are often hanging out). He and his friend from the group made many outings together independently, around the city and the countryside, ranging from small outings at a bar to longer vacations taken together. Other pairs or small groups were known to go out together as well, and sometimes youth in residential centers spent time together on weekends at their natal homes as well. Another youth introduced himself to a group by explaining, ‘ho venti anni, mi piace internet e videogiochi e [lui]’ (he touched [another young man], sitting next to him), ‘è il mio migliore amic.’ (I am twenty years old, I like the internet and videogames and [he] is my best friend).

Youth did credit the social/recreational activity groups for accomplishing the goal of making friends. One youth stated, “Grazie a [servizio] sono riuscito a fare nuovi amici” (Thanks to [the service] I succeeded in making new friends). Another explained:

Yes, in my opinion the goal is to get people to know, let’s say, to get people to know more people because someone with Asperger’s doesn’t know how to meet other people with Asperger’s. That is, you can’t go on Facebook and write “people with Asperger’s” and see some friends that you can look up. Or anyway, that is, there isn’t anywhere to find them. The only place to find other people with Asperger’s Syndrome is to come here and maybe make friends with people similar to you. That’s it. - Youth in Focus Group

Although these youth all still attending the groups, at least one expressed the idea that making friends was the only important goal, and that upon making friends perhaps they would not need the group any more. Although I do not know of a time that someone left 314

for this reason, for at least one youth it was a possibility.

Of course, youth were by no means all friends with each other. There were those that staff told me they made sure not to assign seats next to each other, and those that needed more private rooms to minimize how much they were bothered by interacting with others (as described in Chatper 4). Parents also reported their children complaining about others, particularly those who made a lot of noice. I also observed youth actively conflicting over favored objects or the noise level. Staff generally intervened when conflicts arose.

Previous research (Sotgiu et al. 2011) notes that Italians with autism have large social networks because of their extensive contact with professionals and paraprofessionals. My research provides some thick description of these relationships.

Indeed, both parents and children identified relationships with specific staff members as extremely important.

So... in reality we have always established exceptional relationships with the teachers. Even today the support teachers come to visit us or the kids that came to do therapy, therapy for [my daughter]. - Interview, Parent at Day Center

Yeah, we talk about it even now and if [we] talk about [the educatore], he is very happy, that is, he has a great memory. Then while he was with this [educatore] in this Italian sports center, he met a girl, the ice skating teacher, and educatrice, and she accompanied him after [educatore] and she substituted for him a bit, let’s say [….] She followed him so much, even with her we had good results. A girl, a different person. He was very attached to the girl. Even now we see her. We haven’t seen her since [my son] entered here (sigh) but at any rate the talk on the telephone even the other day they talked therefore she is a present figure. - Interview, Parent at Residential Center

Particularly those who went to one Social/Recreational Group spoke frequently of a volunteer who no longer participated in the group. Youth regularly talked to me about this man, told me about the events he used to run, asked me if I knew him, and even 315

commented on their versions of the details leading up to his leaving. Parents, professionals, and other volunteers might mention him from time to time, but it was the youth that most frequently spoke of him and it was so striking that I referred to him in my field notes and transcripts as “the much missed man.” The much missed man was only one particularly striking example. Other youth in other sites talked about former staff as well, confirming parents’ assertions about the stress of staff turnaround.

I could easily note from my participant observation the close relationship youth had with staff, and their parents noted it as well in Chapter 5. One participant confirmed my observations, telling me specifically:

And then there’s... [there are] the two psychologists that help out here, well, and you, you are kind to me. And therefore I come also for that because I like hanging out with people like psychologists and that type of thing [….] I do not like being here when they are not here. That is, I like being in a place where, let’s say, there are psychologists that understand and so on. I come here more than other to be heard by them because they always listen to me, as do you [….] I am not interested in the other youth, the other people that come here. - Interview, Youth at Social/Recreational Group

In the above quote this youth makes it abundantly clear that he has social goals at this group – to be heard and understood – but that he is only interested in fulfilling them by talking with a certain type of people (psychologists and the anthropologist), not the other youth with autism. At other points in the interview he does talk about wanting to meet other people with Asperger’s syndrome, but he explains here that his relationships with the volunteers and other figures are more important to him. I noted this phenomenon in other sites as well. Ospite went to staff for conversation. Staff sometimes had to actively facilitate conversation between ospiti, encouraging them to speak directly to each other.

One explanation may be that people with autism have enough trouble communicating that they communicate better with someone who has no such trouble and can make up the 316

difference. Certainly I heard this explanation from my participants. Another explanation may be that the ospiti recognized who had power in the situation – the staff.

How did they feel about their psychologists and teachers and educatori? What made a good one? A less good one?

And then it was like I made friends with the psychologist, I liked going there, for me it was fun because she was a person that, let’s say, was interested to hear what I was saying. Which very few did, I mean, no one did. - Interview, Youth at Social/Recreational Group

R: The current one is probably the best one. He listens a lot. A: What kind of professional is he? R: For fu--- I haven’t understood it yet. He listens. He doesn’t patronize. He doesn’t force medications on me. And so on. Like they say in the Simpsons, he’s a special kind of speaking doctor. - Interview, Youth at Social/Recreational Group

Youth also valued teachers and therapists who gave them specific help that they valued.

One youth praised the gym teacher who encouraged him to try despite his difficulty, explaining “meglio che fai, meglio di non fare niente, fai quello che riesci a fare, meglio di niente” (it’s better than you try, better than doing nothing, do what you can, it’s better than nothing). This advice really helped him and even gained him applause from his classmates when he managed to do difficult exercises. Another youth valued a therapist who shared his own experience and empathized:

He was kind, very understanding, patient. Often he helped me. And when I was really down because I was having trouble with my classmates, often he told me that when he was in university even he had problems with classmates, they were bossy with him, especially with some professor that teased him. - Youth at Social/Recreational Group

Youth were not without criticism for professionals. There was also some tension about an educatore that at least one youth thought was infantilizing. Another youth describes his experience with his educatrice at school: 317

They were… they were not trying to make me better. They were trying to make stuff instead of me. I once was so pissed that one of them wrote on my agenda, my homework, that I threw the agenda out of the window. Yeah because I can, I spent weeks, months telling them “I want you to stop. I have to learn to do it by myself.” She never, she never listened, because probably she didn’t think, she thought her job wasn’t to make me become a better person, she thought I was some sort of a good for nothing baby who had not- who needed someone to do everything for him. - Interview, Youth at Social/Recreational Center

These passages show that youth valued relationships with professionals, especially professionals who supported them through specific advice and help and treated them like the young adults they were.

Conclusion

This chapter has answered research questions (1) and (2) – how it autism conceptualized and how do people labelled as autistici define, manage, and experience this condition. Many youth were not particularly aware of autism. I did not get as many participants as I planned, but that is to be expected because day and residential centers are generally for people with higher levels of support needs, many of whom do not communicate verbally. Those who did participate in interviews and reflect on their experiences with the diagnosis identified a variety of characteristics as being part of their autism, but generally talked about stereotypical and repetitive behaviors and interest, social interaction, social communication, clumsiness, anxiety, and intelligence.

Functional consequences of their diagnosis included a balance of strengths and weaknesses and a fear (and sometimes realization) of teasing and mistreatment by peers.

Within autism-specific services, youth were generally content. They espoused goals that were primarily social: making friends, being with other people, getting out of the house.

While relationships with peers at these services could be very important for the youth, 318

relationships with staff were perhaps the most important.

This descriptive chapter and those that preceded it bring us into Chapter 7. In this final chapter, I provide a detailed operationalization of the literature on biosociality, biological citizenship, and the related concepts that I group together as “new biopolitical theory.” I then build upon the description we have read in Chapters 4, 5, and 6 to investigate through specific a priori themes the ways in which participants definitions of autism and their goals for and experiences of sociality do or do not align with the stated characteristics of this new biopolitics.

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Chapter 7: New Biopolitical Theory

Chapter Overview

This chapter answers research question (3), “how do the health identities and subjectivities expressed by participants resonate, or not, with theories of biosociality and biological citizenship?” It builds upon the descriptive and emergent themes of the previous three chapters, and draws from an a priori coding scheme derived from the literature on new biopolitical theory (reviewed in Chapter 1). This chapter is divided into three sections.

Section 1, “Defining New Biopolitical Theory,” explicates the four major themes

I identify in Chapter 2: molecularization, somatic expertise, individual identities, and collective identities and socialities. This section explores each theme in detail, identifying and defining subthemes, and discussing examples and negative cases in the data.

Section 2, “Complicating New Biopolitical Theory,” demonstrates the complexity of new biopolitical theory in the data through several key examples. It explores situations in which positive and negative biopolitical themes co-exist in a single narrative. This section demonstrates that a more nuanced understanding of new biopolitical theory focused on multiple themes reveals how the theory applies as well as the limits to its applicability, rising to the call of previous scholars (Beck and Niewohner 2009;

Greenhough 2011) to craft a more locally nuanced understanding of new biopolitical theory and refuting some scholars’ (Roberts 2008; Sleeboom-Faulkner 2011) claims that these theories are only applicable in “Europe and North America” by demonstrating that they both do and do not apply in the Italian context. These findings are in line with anticipated “threats” to new biopolitical theory explored in Chapter 1 – 320

deinstitutionalization and integration, lack of a consumer role, and “social- embeddedness” models of doctor-patient interaction.

Section 3, “Whose New Biopolitical Theory,” tentatively explores the demographic distribution of new biopolitical modes of engagement in participant narratives. It asks what factors are related to level of biopolitical sentiment: parent demographics, youth demographics, or type of site they attended. Correlations identified two variables as statistically significant in determining the presence of biopolitical sentiment: Site Type (Day, Social, or Residential) and Child Sex (Male or Female). Being recruited from Residential Centers and Social/Recreational Groups were associated with presence of biopolitical themes in interviews, as was child sex being female. Potential explanations and suggestions for future research are discussed in this section.

Section 1: Defining New Biopolitical Theory

As Chapter 1 explains in detail, I use the term “new biopolitical theory” to refer to a collection of theories that comprise a reformulation of Foucault’s (1990) theories of biopolitics following changes in biomedical technologies (Rabinow 1999). Deriving from a close reading of the literature, I propose that new biopolitical theory can be understood as composed of four major themes, detailed in Figure 2: molecularization, somatic expertise, individual illness identities, and collective identities and biosocialities. In

Chapter 2, I detailed how these themes emerge from the literature. In Section 1 of this chapter, I detail how I see these themes in participant narratives, providing several excerpts from interviews that I have coded under each theme and subthemes therein.

There are some aspects of new biopolitical theory that are excluded from this figure and my analysis and thus I see fit to mention them here. One is the role of 321

proteomics as a subcode of molecularization. Proteomics is an extremely important development as a molecular component of the human body, in many ways replacing genetics (e.g., Lock 2005). However, the topic of epigenetics and proteomics does not arise in much discussion in my own research, only raised by professionals, so I am exluding proteomics from this table. I am also excluding Rose’s (2007) concept of optimization because it goes beyond a health-illness dichotomy, and my research is situated within that dichotomy (or a similar dichotomy, as not all participants would define autism as an illness, as discussed above). Finally, I am excluding economies of vitality (Rose 2007) and all aspects of bioeconomics which relate closely to biopolitics and come into play in autism research, because my focus is instead on treatment and social organization. For similar reasons, I do not include a discussion of the political economy of hope (Rose 2007). I acknowledge that these interrelated concepts are excluded from my below operationalization, and are worth further investigation in studies of new biopolitical theory in Italy that approach autism from different, more relevant angles.

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Figure 4: New Biopolitical Theory Themes and Subthemes

Molecularization Geneticization

Neurologization

Microbiologicization

Somatic Expertise Pastoral Keepers Pilgrimages of Hope Experiential Expertise Patient Literacy Responsibilization Somatic Individuality Individual Autism as Identity Identities Cerebral Subjectivation Autism as a Way of Being Autism Pride Autism as Normal Social Model of Disability The Family with Autism Collective Social Group Formation Identities and Socialities Informational Biocitizenship Digital Biocitizenship Rights Biocitizenship Activism and Volunteerism

323

Molecularization

Molecularization refers to a “‘style of thought’ of contemporary biomedicine” which “envisages life at the molecular level, as a set of intelligible vital mechanisms among molecular entities that can be identified, isolated, manipulated, mobilized, recombined…” and so on (Rose 2007:5-6). With respect to autism, such molecular levels of thought include the genetic; the neurological – neurochemical or neurostructural; and the microbiological. These categories are, of course, not mutually exclusive – for example, both genes and gut microbes can both easily be said to affect brain structure and chemistry.

Geneticization refers to an increasing focus, particularly in the 1990s, on the genetic basis of illness. Lippman explains, “Today’s emphasis on genetic causes and genetic understanding seems to be part of a more expansive process I have called

‘geneticization’ (and have begun to describe elsewhere). Those in charge of health- related naming and helping activities increasingly now reduce differences between individuals to their DNA codes, define most disorders and behaviors, as well as physiological variations, as at least in part genetic in origin, advocate the adoption of interventions that employ genetic technologies to manage problems of health and, in general, (incorrectly) equate human biology (humanity?) with human genetics, implying that the latter acts along to make each of us the organism she or he is” (1991:85). Though not all genetic discourses are as reductive as in this description, Lippman also notes another aspect of geneticization much seen in autism literature: “Packaging human health problems – as well as a whole range of human variability – as ‘genetic’ blurs the distinctions between disease and illness, disability and handicap” (1991:87). Locating 324

autism in the nexus of medical and psychiatric concepts often proves difficult – even determining if it is “medical,” “psychiatric,” both, or neither.

One encounter in the field keenly illustrates this difficulty. The title of the project under which I collected data was “psychiatry and subjectivity.” One participant, upon reading the consent forms, commented that this title was inappropriate because autism does not follow under the domain of psychiatry, but pedagogy. I asked him to elaborate, and he told me, “La psichiatria è più legata ai, alla patologia, alla patologia mentale, eh? E la persona autistica non è necessariamente patologica, mentalmente patologica”

(psychiatry is related more to pathology, to mental illness, eh? And the person with autism isn’t necessarily ill, mentally ill). The following conversation elaborates:

Anthropologist: But for autism you said that it was instead psychopedagogy? Respondent: Psychology and psychopedagogy. Neuropsychology, the neurosciences. But I mean that while psychiatry has more to do with mental illness, and what that really means is the crazy person, the insane person, the psychopathic person, the sociopathic person, the person with personality disorders, mm?, the person with autism is not necessarily mentally ill. They can be, there can be a comorbidity, no? But you can’t take for granted that the person with autism is a person under the domain of psychiatry. Not necessarily. A: And psychology and psychopedagogy are considered a part of medicine or something else? R: No no no no. Historically in Italy it emerged more from the philosophical branch. - Interview, Coordinator

Not only is it difficult to locate autism within medical subspecialties, it can be difficult to locate autism in the line between medicine and psychology, even medicine and education.

These difficulties are locally particular depending upon the available structures, as shown by this participant’s allusions to the history of Italian medicine and social services, described in Chapter 2.

As presented in previous chapters, eight parents and one youth identified genetics 325

as likely or possible causes of autism, although not necessarily solely or reductively as in

Lippman’s discussion. Genetics did, however, play a large role in participants’ understanding of autism. Many parents also explained this genetic component to index heredity, often identifying other family members with similar characteristics of autism.

Although most discussions of genetics stopped at the simple fact of causation, one youth went further and described autism as “essendo geneticamente repubblicano” (being genetically republican), explaining that to him it means being “di idee ristrette, incapace di capire un altro punto di vista, incapace di pensare più di una o due cose, incapace di cambiare idea, ed incapace di accettare i fatti che contraddicono le tue opinioni preconcette” (closeminded, unable to understand a different point of view, unable to think of anything except one or two things, unable to change your opinion, and unable to accept facts when they go against your preconceived opinions).

As discussed in Chapter 5, some parents argued that their children’s problems were not autism, or not pure autism, because of genetic problems. In these cases, parents geneticized their children’s problems, but did not geneticize autism. In fact, geneticization at least partially negated autism.

Other parents did not contest autism at all, but rejected the genetic component entirely. Many parents described the tests their children underwent when they were younger, attempting to locate the source of their problems. The following parent describes a typical set of tests, but evidences a particularly strong conclusion – that the child’s problems were entirely “mental” and not physically locatable. After a series of clinical tests there were “Risultato zero. Il bambino non aveva, al livello di... di indagine di malattia in sé non c’era niente. Il bambino è sano. Infatti lui è un ragazzo sano. Il suo 326

problema è mentale, non...” (Zero results. The child did not have, at the level of… of exams for disease themselves, there was nothing. The child was healthy. In fact, he is a healthy boy. His problem is mental, not… (trails off).

Themes of neurologization touched on both neurochemical (Rose 2003) and neurostructural (Fein 2011) selfhood. In these discourses, parents located their children’s problems, at least in part, in damaged brains. Youth interviewees, notably, never used these discourses to talk about autism,57 although one parent does describe her son’s neurological selfhood. She recounted, “Una volta ha detto una frase tremenda, aveva 10 anni. ‘Il mio cervello mi fa fare delle cose che non voglio’” (One time he said a terrible phrase, when he was ten years old. ‘My brain makes me do things I don’t want to do’).

As shown in Chapter 5, eight parents identified neurological causes such as brain damage as the likely or possible origins of their children’s autism. Several parents explains children’s behavior in terms of their brains:

We were thinking that it couldn’t a neurological thing, and instead I understood from the studies that it is really something in the brain structure, a physical problem. This is what I understood, the cause of this thing. A part of the brain that works in a certain way. - Parent at Social/Recreational Activity Group

In the particular case, indeed, of [my son] […] [some of the] cubbyholes of his brain are much more advanced. No? But in certain other things, even much more simple things like one day for example I said, “[son], open the umbrella.” He is not able to open the umbrella. - Interview, Parent at Day Center

She socializes maybe with the small children. Maybe not with the youth. Because she… is a child! She is big like a woman, because she is already… but she is small in terms of her brain, unfortunately. - Interview, Parent at Day Center.

57 Only one youth uses neurologization discourses at all, to say that he wants to stop taking medication because “ho letto su siti internet di medicinali che come effetti collaterali, riducono le funzioni cerebrali” (I read online that as side effects, they reduce cerebral functions). 327

These three different examples represent three ways of locating autistic characteristics in the brain: identifying brain structure as the cause of autism; linking specific skills to brain structure; and identifying a mismatch between the age of the child’s body and the age of their “brain.” Parents also talked about therapies as acting on the brain.

Others, however, explicitly questioned the neurologization of autism. As with geneticization, they referenced specific tests that failed to locate a cause in the brain.

Even when results emerged from the tests, parents did not always reduce children’s characteristics to their results. For example:

These ... stains, these zones, like this, emerged, but the neurologist said that they did not justify the language delay of [our son]. They justified a delay but not a delay as advanced as his. So she made this diagnosis that there was an intellectual disability but autism covered this thing a bit, that is, it was more in this direction that [our son’s] communication difficulty – always more apparent – was justifiable as autism rather than this intellectual disability. - Interview, Parent at Residential Center

I distinguish neurologization from future related codes of somatic individuality and cerebral subjectivation. In some situations these codes overlap. For example, the following passage represents both neurologization and somatic individuality:

I tried, still now, to do some things on my own, like brain gym, that is, starting from a stimulation, doing some body movements, there is a greater fluidity of the thought. - Interview, Parent at Social/Recreational Activity Group

In this example, as in several of those above, autism is not only located in the brain, but the person with autism or their parent act on them in the language of biomedicine, connecting behaviors and therapies to brainhood. Yet more cases of neurologization do not indicate somatic individuality.58 In these cases, autism is located in the brain, but the

58 In 65 instances of the neurologization code, only 30 were also coded as somatic individuality. 328

brainhood discourse stops there. It does not become a basis for identity or action. For example, one parent said, “Probabilmente ci sono dei collegamenti a livello neurologico che non sono corretti” (There are probably connections at the neurological level that are not correct). This phrase identifies a neurological cause for autism, but does not speak to her child’s personhood as brainhood.

As we will discuss in more detail below, the cerebral subjectivation theme rarely appeared, and never overlapped with neurologization. I use cerebral subjectivation to refer to identity practices linking brain “wiring” or other metaphors to a positive valuation of autism, whereas the “brainhood” of “cerebral subjects” I retain as Ortega and

Vidal’s (2007) formulation as a type of somatic individuality. Brain discourses are not cerebral subjectivation, on the other hand, unless they are positive valuations of difference and identity.

Microbiologicization refers to the molecular focus on biologic agents. As Paxson

(2008) explains, “Biopolitics, then, is joined by microbiopolitics: the creation of categories of microscopic biological agents; the anthropocentric evaluation of such agents; and the elaboration of appropriate human behaviors vis-`a-vis microorganisms engaged in infection, inoculation, and digestion.” In the world of autism science and politics, microbiologicization ties most closely to vaccine causation theories – vaccines are biological agents that cause harm – and dietary treatments – various foods and their proteins, vitamins, and minerals can cause or alleviate harm. As some parents explain:

There’s a study in which even Italy participated, that was coming… I don’t know how long to show it, the autoimmune origin of autism. That is, according to this study it could be something that enters, it could be a virus, something mundane… and I add, why not an attenuated virus like that in a vaccine?, in the pregnancy of the first months of life, that set off an autoimmune reaction. - Interview, Parent at Day Center 329

A gastrointerologist first started to care for children with autism, understanding that most of them have intestinal disturbances [....] If they come into contact with gluten, with substances… they are more intolerant than allergic, much more, therefore it’s a less serious form but their intestine is compromised, that is, at least at the time, when he made this diagnosis, he told me that (my son’s) intestine was already damaged, that he was having problems that were not understood and it was already very inflamed. Effectively, even today, even though it’s being treated, he takes the pills for this problem, and a diet without gluten, yeah, mostly without gluten. First also without casein, now we have reintroduced casein. That is, he indeed has some long periods here where he is always very bloated. And this is strange because no one managed to do the statistics. First it corresponded with more relaxed periods. So he gained weight and was bloated. Now it’s the opposite. Now he is bloated when he is agitated. So no one can think that it’s a continuous intake of air, a lot of it. - Interview, Parent at Day Center

These passages show the way parents understand these microbiological components to affect their children’s bodies. In autism literature, this microbiologicization overlaps heavily with neurologization, as in the book Children with Starving Brains (McCandless

2009) which links the “leaky gut” of individuals with autism to their brain functioning. A few parents also articulated this link, for example:

Reading all this information about vaccines that caused harm, I read that in these cheap vaccines they used mercury, which now we know that mercury damages the brain. - Interview, Parent at Social/Recreational Activity Group

However, making this link between microbes (or at least the preservatives and metals associated with them) and neurology explicit was a minority perspective. For the most part, parents’ discussions of vaccine causation and dietary treatment remains limited to microbiologicization, not neurologization. As discussed in Chapter 5, eight parents linked their child’s autism spectrum condition to vaccinations as a likely or possible cause.

However, some participants also rejected microbiological discourses. Two parents and one youth explicitly rejected vaccine causation theories. 330

In summary, molecularization themes occurred in several ways when parents and participants discussed autism, especially the causes of autism. These causes could be genetic, neurological, microbiological, or a combination thereof. A notable minority of participants also explicitly rejected molecular theories.59

Somatic Expertise

Somatic Expertise refers to “new ways of governing human conduct” (Rose

2007:6) which encompass somatic technologies and expertise of both patients/parents and professionals, in fact blurring the line between them.

Professionals exercise somatic expertise through specializations on “particular aspects of our somatic existence” and “advise and guide … individuals and families as they negotiate their way through the personal, medical, and ethical dilemmas that they face” (Rose 2007:6). In doing so, they act as what Rabinow (1999:413) calls “pastoral keepers” who “help [patients and families] experience, share, intervene, and ‘understand’ their fate.” Many of these pastoral keepers were discussed in Chapter 5, when parents sought the advice of professionals how to govern their own conduct at home. Chapter 5 discusses several therapies involving intense in-home effort including ABA and

TEACCH, DAN!, Doman-Delacato, and Feuerstein methods. Parents also spoke of professionals advising them not necessarily on a protocol to follow, but simply how to comportarci – how to behave, how to comport themselves. Others talked about the close guidance they received from certain professionals in their own endeavors. For example, on parent gathered a large group of volunteers to engage his daughter in a variety of therapies. He explains, “Ho iniziato un lavoro abbastanza intenso con un gruppo di

59 33 interviews had passages coded PRO Molecularization. 15 had passages coded CON Molecularization. 331

volontari dopo che avevo conosciuto una professoressa a scuola” (I started a rather intense work with a group of volunteers after I met this professor at school). This group worked with close supervision of the professor. This activity was “Seguita sempre da questa professoressa che visitava [figlia], preparava un programma, mi spiegava il programma ed io poi dicevo ai volontari quello che dovevano fare” (Always followed by this professor who visited [my daughter], prepared a plan, explained the plan to me, and then I told the volunteers what they needed to do).

Pastoral keepers were important not only for parents, but also for youth. Pastoral keepers, at schools and especially at the services in which I worked, created a space specifically tailored for people with autism, for example:

In my opinion it is opportune to have kids with autism in specialized structures. Above all because the educatori are specifically trained to work with kids with autism. The activities are designed for kids with autism. - Interview, Parent at Day Center

Youth also talked about important pastoral keepers in their lives, such as the youth in

Chapter 6 who described his relationship with an understanding therapist who shared his own similar experiences having troubles with peers. This therapist also suggested several books and films about Asperger’s and autism to this youth. Another talked about his teacher, who “sapendo che avevo la sindrome di Asperger, mi ha detto che una sua amica con la sindrome di Asperger frequentava questo posto. E allora mi ha dato l’indirizzo, io sono venuto qui” (knowing that I had Asperger’s syndrome, told me that her friend with Asperger’s syndrome attended this place. And so she gave me the address, and I came here.” In these cases, these figures served as key pastoral keepers, helping youth to understand their condition.

Parents could also serve as pastoral keepers for youth, often mediating 332

information from other sources and directing them to services.60 For example:

Also thanks to my parents that found this section [i.e., the service] because they advised me and in fact it was also to their credit, if it wasn’t [sic] for them, I would not know with whom to interact, I wouldn’t know with whom to speak. - Youth at Social/Recreational Activity Group

These passages show the importance of pastoral keepers not only in helping parents understand autism, but helping people with autism themselves.

The role of pastoral keepers was overwhelmingly important to parents and youth, who spent a lot of time interfacing with professionals. However, not all professionals were pastoral keepers – they did not all “keep” parents and youth. Some did not help them understand anything at all. Parents in particular complained that they received no guidance from diagnosing physicians on what autism was and what it meant. As one parent explained, “Sull’Asperger io dal medico non ho saputo niente” (I did not learn anything about Asperger’s from the doctor). Some parents accused doctors of really hesitating to give a proper diagnosis. In one detailed example, a parent described:

She didn’t explain anything about autism! She didn’t tell us anything! She kept saying that this child has problems [.…] and she never arrived at the “therefore,” she never arrived at “therefore,” I was pretty unnerved about that, see. At the end, it was his father who said, “but are you saying that our son has autism?” And she said “Yes, he has autism.” See, because she never managed to arrive at the “therefore.” - Interview, Parent at Residential Center

Other professionals offered negative interactions. For example, a parent told me about a particular service, complaining, “Non mi è piaciuto a volte il loro atteggiamento così non di collaborazione ma di ostilità nei miei confronti, confronti con la famiglia” (At times I did not like their attitude, not so much of collaboration but hostility toward me, toward

60 Many youth asserted that they themselves chose to attend services, but it was almost always parents who identified the services and introduced youth to them. 333

the family). Complaints about professionals’ lack of guidance were particularly prevalent with respect to support teachers at school, as Chapter 5 discusses in more detail with respect to parents, who complained that children were “ghettoized” and excluded from the mainstream classroom, sometimes entirely alone, sometimes not learning anything that parents could tell. In Chapter 6, we heard from youth who similarly complained of staff at school and services who they felt treated them in infantilizing ways, not helping them do things but doing them for them.

Pastoral keepers whose work becomes particularly known may be the destination for what Rose (2007:6) calls “pilgrimages of hope,” in which patients and families travel to access cures or treatments. In the case of autism, there are several such figures, some of whom are discussed in Chapter 5. Participants described pilgrimages to well-known psychologists and neuropsychiatrists across Italy; to specialized, sometimes even traveling doctors or equipe (teams) specializing in Defeat Autism Now! or the Doman-

Delacato Method; to Dr. Feuerstein in Israel; and to TEACCH and Sonrise parent trainings in the United States.

Patients/parents exercise somatic expertise through the “Experiential Expertise”

(Borkman 1976; Hughes 2009; Rabeharisoa et al. 2013; Rabeharisoa and Callon 2004).

Participants exercised experiential expertise when they challenge medical authority and assert that they may know better than the doctors by virtue of their personal and familial experiences, for example when they instruct teachers or staff on how to work with their particular child and when they identify signs that doctors ignore. These claims to expertise can be based on personal or familial experience, as in those who invoked a

“mother knows best” narrative. For example, parents stated, “Penso... non sono medico, 334

ma sento di sapere cosa è bene per mia figlia” (I think… I am not a doctor, but I think I know what is best for my daughter) or, “Non c’è miglior medico dei propri genitori, della propria mamma. Sapevamo già prima della diagnosi che non andava bene, che ci aveva questi problemi. Non avevamo bisogno dell’etichetta” (There is no better doctor that their own parents, than their own mother. We already knew before the diagnosis that something wasn’t right, that he had these problems. We didn’t need the label). One parent explained his expertise, which gives him the ability to immediately evaluate a doctor. He told me, “L’ho portata da non so quanti medici, alla fine ero diventato più esperto io dei medici” (I took her to I don’t know how much doctors, at the end I become more of an expert than the doctors). Parents also invoked experiential expertise in explaining that they, through their familial relationship, could easily understand their child with autism even if others could not. Parents also respected the experiential authority of others, praising professionals who were also parents of children with autism, and seeking books that were written by parents or people with autism themselves in order to better understand autism.61

Youth also drew on experiential expertise to explain autism. One youth explained that having spent much of his life in autism-specific services and settings he understood them perhaps better than staff. Indeed, I was often struck by the detailed insight with which participants on the spectrum described other people’s autism (though not always their own, though often because they contested it). Another youth described with pride

61 At the time of my research, two prominent books about father’s experiences had recently been published and were much discussed by many parents: Fulvio Ervas’s (2012) journalistic Se ti abbraccio non aver paura (If I hug you, do not be afraid) which recounts the experiences of a father and son who went on a motorcycle trip across central and north America; and Gianluca Nicoletti’s (2013) autobiographical Una notte ho sognato che parlavi (One night I dreamt that you were speaking). 335

his success in self-diagnosing Asperger’s syndrome, which a psychologist then confirmed. I asked how he came to this conclusion and he told me:

I noticed that I never look... sometimes I am afraid to look people in the face, or when I look them in the face I look at them in a very pronounced way, that is, I look too much, almost fixated with… I unsettle them. When I look at someone I don’t look at her but look through her, look at a wall behind her. It was like the person was invisible. And then very often I underestimate people a lot [….] And then I did various intelligence tests online and they all gave me a high result. - Interview, Youth at Social/Recreational Activity Group

At times, parents furthermore respected the experiential authority of people with autism, supporting them when they expressed dissatisfaction with services. For example, one parent at a Day Center told me, “Nel momento in cui mi dirà una mattina “Non voglio stare a scuola, voglio stare a casa,” ecco questa cosa lui la sa esprimere, comincerò a informarmi, a preoccuparmi” (The moment that he tells me some morning, “I don’t want to go to school, I want to stay home,” he knows how to express this thing, I will start to investigate, to worry). In this type of situation, parents stressed both that their experience allowed them to understand their children, and that their children’s experience allowed them to assert preferences in service use.

A few parents explicitly discounted their experiential expertise, noting that they were not doctors and deferring to clinical knowledge. They did not always take this lack of expertise kindly, however. As one parent explained, “Se la dottoressa dice di no, siamo sempre lì, no? E tu ragioni da mamma e non da medico, quindi non sei razionale”

(If the doctor says no, we are always there, no? and you reason like a mother, not like a doctor, so you are not rational). Another similarly explained, “Devi accettare quello che dicono anche se è sbagliato” (You have to accept what they say even if it is wrong).

While some parents agentively valued clinical expertise over experiential expertise, 336

others found that their opinions were ignored or overridden. It could be difficult to exercise experiential expertise, even for parents who were certain they had it.

Parents and youth may also exercise lay expertise by internalizing, not challenging, medical authority. They do this through patient literacy, in which patients/parents read up on the condition with which they have been diagnosed.

Sometimes this literature corresponds with the diagnosing physician, sometimes it comes from other sources – competing paradigms, complementary and alternative medicine, etc.

When parents read books on the experiences of people and families with autism, they exercised both patient literacy and a respect for experiential authority.

Parents talked about their literacy as documentarmi or informarmi (“read up on” or “inform myself about” the topic). Parents also attended conferences and workshops about autism. As one typical comment explains, “Quando mi hanno fatto la prima diagnosi, quindi poi ho imparato da lì attraverso gli specialisti, convegni, insomma, libri, ecc, che cosa significasse” (When they made the first diagnosis, I then learned everything through specialists, conferences, in short, books, etc., what it meant). A few youth also read up on their conditions. One youth’s therapist suggested several books and films which he read and watched. The youth who diagnosed himself explained, “Mi diagnosticavo da solo cercando sui libri” (I diagnosed myself just by searching in books).

A few counter examples also emerged. One parent noted that she had little time or energy to read. Others found studying up to be overwhelming and exhausting, as

Valentine (2010) found for some of her participants in Australia. As one parent at a

Residential Center explains, “Poi, a un certo punto ho detto: “Non voglio sapere più 337

niente” perché abbiamo capito che ci sono tante scuole di pensiero” (Then at a certain point I said, “I don’t want to know anymore” because I understand that there are so many schools of thought). She committed herself to certain pastoral keepers she trusted, and followed their recommendations. Youth cautioned others against certain types of literacy.

One youth reported telling his neurotypical friends seeking to learn about Asperger’s,

“Non leggete su wikipedia perché wikipedia dice un sacco di cose che non c’entrano niente” (Don’t read Wikipedia because Wikipedia says a bunch of things that have nothing to do with anything).

Somatic expertise blurs the line between professional and patient/parent.

Patients/parents are responsibilized, “urged to become active and responsible consumers of medical services and products” (Rose 2007:4), to collaborate with professionals, and to become protoprofessionals themselves. I see responsibilization when patients/parents make consumer decisions between services or therapies, and also when parents undertake therapy programs that require a lot of at-home involvement, such as following an autism- specific diet or creating visual agendas in the home. Occasionally parents invoked reproductive responsibilization, choosing not to have more children who might have a higher risk of autism, as Raspberry and Skinner (2007; 2010) found in the United States.

Parents describe the work they do:

[It was] great because I shared it fully – and it was a therapy that involved the family too, so when [my daughter] did therapy I did it too at the same time. And therefore, that is, this working together really was, that is, it prepared us together, we did things together. - Interview, Parent at Residential Center

Anyway I believe it was Risperdol that I gave him. I tried to give it to him, I don’t know how many days, if it was two weeks or what. I saw him getting worse and there I, ignorantly, took it away from him suddenly, something that they told me I should have done, I would have taken it away little by little. I didn’t know. And 338

one day I said, “Enough I won’t give it to him anymore.” But I was happy. [….] But considering all the journeys and that [my son] had already been saying for some time, “mamma, I am tired, I don’t want to go,” and the same psychologist after I took [my son], maybe left after five minutes saying, “We are leaving because he doesn’t want to work much.” Well I said, “[My son] is tired. He doesn’t want to do these things anymore. It’s useless that we lose all this time because by taking [my son] to therapy, he doesn’t have time to do other activities. In fact he cannot do music, he cannot do sports.” And so at a certain point I said, “enough, I’ll stop everything.” I said, “Enough therapies.” And I dedicated that time to music and to sports. And [my son] had incredible improvements. See. It was the lucky choice. - Interview, Parent at Social/Recreational Group

In the first example, the parent was responsibilized by professionals alongside professionals. In the second, however, the parent responsibilized herself, made her own decisions against medical advice (if unwittingly). As this contrast demonstrates, responsibilization took several forms in the context of several different types of parent- professionals relationships. Indeed, parents did not always value responsibilization. Some parents complained about being responsibilized:

[I hope] that the situation improves [at the service]. That they take on more educatori. And that they become autonomous in the management of [my son] because right now I follow him a lot, eh? [….] In short [I hope] that they make do a bit better on their own. - Interview, Parent at Day/Residential Center

With the professionals I met, I was really in disagreement with the Delacato equipe. Really because they promoted a standardized program, not personalized [...] [they told me that] it was I who did not succeed in carrying out the program. But in my opinion it was the program that wasn’t adapted to her needs and above all to her tolerances. - Interview, Parent at Residential Center

Similarly, other parents talked about not being responsibilized, but in a positive way.

Parents at Residential Centers, for example, explained, “Perché mi sento così accudita, dal punto di visto di [figlio] che mi ha appunto un po’ demandato a loro, no?” (I felt so cared for, from [my son]’s point of view that he had indeed transferred a bit from me to 339

them, no?), and, “Anche in questo ultimo anno [figlia] ha subito due interventi [...] e ci hanno detto: “Voi non preoccupatevi, ci pensiamo noi.” E quindi effettivamente c’è stata anche lì una grande attenzione non solo medica ma anche umana” (Even in this last year

[my daughter] underwent two surgeries [...] and they told us, “don’t worry, we’ll worry about it.” And therefore essentially there was also a great attention not only medical but also human). While some professionals responsibilized parents, and some parents responibilized themselves, other times parents gratefully subordinated their responsibility to that of the doctors. The main way in which parents’ narratives contested responsibilization is when they explained their choice of services, treatments, and the like

– even those they did not like – in terms of being consigliato or indirizzato (advised or directed) or having the path proposto (proposed) by professionals. Parents used the passive voice, putting the responsibility for these choices off of themselves. Moreover, some parents explicitly contested their ability to do as well as staff:

On the other hand it is a method that works well because only an institution can give a kid with autism the serenity, the discipline, the order that they so need. In the family you don’t manage. The families that we know are not able to always follow a stable, studied, scientific routine. We aren’t able. And neither are the other families that we know. - Interview, Parent at Residential Center

The concept discussed in Chapter 5, “genitori devono fare genitori,” also addresses a lack of responsibilization. Parents should be free to be parents, not obligated to be paraprofessionals too:

On the other hand, do you know where they told us there is a complete presa in carico [patient management, lit. taking into care], a father we met 8, 9 years ago [….] He lived in New Zealand, for several years. He said that in New Zealand they take the baby into care from the moment he is born, “I only act as the father.” - Interivew, Parent at Social/Recreational Group

One parent was in fact also a doctor, but explained the importance of keeping these roles 340

separate in interfacing with schools:

Yes, yes, it was all me in the sense that then after I was, let’s say I... if then at the end I always prepared the tools I always wanted to separate my role as doctor from my role as a mother. So I prepared all the materials and I passed then to the child neuropsychiatrist and then I wanted her to interface with the teachers. All this to not do, in short, the mother, the jack of all trades, at any rate there are some roles that in my opinion there is a certain order to respect. This doesn’t subtract, clearly we have great relationships so the teachers knew perfectly well who was behind it, that it was me, and we had a great report but at any rate I maintain that it is important, look, that there is, I am convinced that it is very important to respect the rules in which a mother, even if she is also a doctor, acts as a mother and that there is a competent neuropsychiatrist – this is another very important thing, above all in Italy where neuropsychiatrists’ competence in autism is close to zero – and then a receptive school with the desire to learn. - Interview, Parent at Social/Recreational Group

One parent, however, actively resisting this idea that parents should be parents when a professional suggested it:

I was very lucky in the second year of elementary school at a certain point, he had a very capable teacher, very very good, who first told me, “you stay away, act as the mother” (laughs) but then after a couple weeks she told me, “[Your daughter] is very complicated. Let’s see about working together.” I said, “Great, let’s work together.” So we did some things together, and she was really great. I must say that she is really great. - Parent at Residential Center

So far these themes – pastoral keepers, pilgrimages of hope, authority of experience, patient literacy, and responsibilization – are modes of citizenship and consumer behavior that are only implicitly somatic. As Eyal and colleagues (2014) note, many of the therapies used for people with autism are “low-tech” and therefore the biomedicalization and geneticization of autism biosociality is in question. Indeed it is this code, “somatic individuality,” that captures the biological nature of this engagement.

Somatic individuality refers to “beings whose individuality is, in part at least, ground within… [their] fleshy, corporeal existence, and who experience, articulate and judge, and act upon… [themselves] in part in the language of biomedicine” (Rose 2007:26). 341

Parents and youth invoked discourses of somatic individuality linked to the molecular themes discussed above. I also included testa (head) as somatic individuality, though only cervello (brain) as both somatic individuality and neurologization. Some somatic individuality discourses linked behavior to body, as in the parent at a day center who explained, “Questa cosa già con il mangiare un po’ è - però da piccolo era molto... con gli orari del mangiare era ... sembrava che avesse un orologio in testa” (Already this thing about eating a bit was - but since he was small he was very... with the hours for eating he was… it seems like he had a clock in his brain). Another parent explains her son’s relationships with a variety of common turns of phrase, which take on a special significance for him in light of his relationship with his diagnosis:

He couldn’t even imagine that it was anything that regarded a mental problem. I don’t know, even fighting with his sister, if she said, or maybe I said, “what do you have in your head?” Absolutely, it was a phrase to avoid in every way, because it was a thing… a tragedy, he was so mad he could die. Or, “But, are you an idiot?”, or… telling him something like this, something about mental illness, let’s say… or “you are out of your head [i.e., mind],” making reference to the head or to the brain, it was something absolutely… it send him into all of his rages, clearly. - Interview, Parent at Social/Recreational Group

Other discourses focused on therapeutic action in terms of the body, such as the parent at a residential center who stated with respect to her son’s epilepsy, “Speriamo che trovi il dosaggio giusto [e] che stia un po’ bene, che faccia, il suo cervellino riesca a riposare un po’” (We hope that he finds the right dose to be well a bit, that he does, that his little brain manages to rest a bit). Parents who talked about the relationship between diet, supplements, and intestinal state and behavior (as mentioned above) also implied somatic individuality. In these cases, the diagnosis of autism had important implications for etiology and treatment. One parent at a residential center made this connection very 342

clearly, pondering, “Forse se la diagnosi fosse stata mirata un po’ prima anche durante la scuola tanti interventi proprio anche strutturali, di organizzazione, potevano magari far stare più meglio noi, lei, tutto, però purtroppo così è andata, basta” (Perhaps if the diagnosis was made a little earlier, at school age, so many interventions really even structural, in organization, could have maybe made it go a bit better for us, for her, for everyone but unfortunately it went like this, enough).

While some parents and youth did describe their children or themselves in the language of biomedicine, others voiced strong resistance to somatic individuality.

In their opinion, the fact that we found out “late,” in quotes, that [our son] had autism... it was a positive thing in the sense that we had always… um… sought to… uh… unblock his language, his doing of the things. His independence. We always insisted. [….] But they said, indeed, the doctor said that in her opinion anyway the fact that… that we had stimulated him really so much. He was stimulated “over” really in many ways… then maybe we would have done it the same way even if we know he had autism first, however. - Interview, Parent at Day Center

I was really fortunate because in… at that point indeed [the doctor] told me that… s/he couldn’t yet (make) a complete diagnosis, let’s say, because [my daughter] was too young. And that anyway working a lot, there were a lot of margins, many margins of recovery. Therefore s/he did not give us an absolute verdict. S/he told me there was a lot to work on. And so we got down to working on it. This helped a lot. That is, I was, in some way s/he made me feel like I was still a subject, not victim to a pathology but still a subject capable of doing something. - Interview, Parent at Residential Center

This statement is the exact opposite of the modes of engagement described in new biopolitical theory literature. Instead of finding a diagnosis empowering, this parent found the absence of a diagnosis empowering.

Several participants questioned the somatic nature of autism. Two parents and one youth compared it to carettere or personalità (character or personality). As discussed in

Chapter 6, several youth on the spectrum found autism, and Asperger’s syndrome in 343

particular, to be meaningless.

As both parent and youth statements above show, somatic individuality did not resonate with many participants. Such participants argued that the specific diagnosis of an autism spectrum condition did not help them act upon themselves.

In summary, participants expressed a wide variety of sentiments – both pro and con – regarding somatic expertise. Many of these sentiments resonate with Valentine’s

(2010) findings in the Australian context, in which parents exercised what might be called somatic expertise in the absence of resources, and were obligated (not empowered) to make treatment and intervention choices. These Australian parents could not opt out of making a choice. Section 2 will explore in more detail the relationship between these themes and the various structures of parent/patient-professional interactions. For now, we turn to individual, and then collective, identities.

Individual Identities

Individual identities refer to those identities built around specific conditions. I identify several subthemes in the literature which are present, in varying degrees, in my data.

Autism-as-identity encompasses statements in which someone claims autism as an identity label for themselves, or explains their behaviors and choices in terms of autism. The occasional youth or parent explained autism in these terms:

When I have had to explain, like, to people with whom I was close that I had Asperger’s really I didn’t have a way, that is, I couldn’t explain it to them. I said, “it’s like I am” because they already… the people that I call friends or at any rate that I keep close to me at any rate understand what there is, they see that I am different form the others in the way I behave, the way I think, etc. And so, that is, I say this is Asperger’s Syndrome, in theory, that unites all these factors etc. - Group Interview, Youth at Social/Recreational Group 344

Chapter 6 presents narratives of parents who reported instances of identification, such as the son who identified with “autistic traits” after seeing an art exhibit and the daughter who saw herself as like a child she knew with autism. In these examples, autism serves as a basis for understanding behavior and identifying similarity between oneself and others.

Yet several others resisted autism as an identity. One parent contrasted the diagnosis of autism with others, noting, “Se tu hai un figlio Down dici, “è così,” eppure anche i Down che sono comunque diversi, perchè non è che sono uguali, però dici che c’è questa diagnosi, un figlio che è spastico, c’è questa diagnosi, un figlio che è in carrozzina perché non riesce a camminare, è così. E noi non riusciamo” (If you have a child with Down’s Syndrome you say “it’s like this” and even if people with Down’s

Syndrome are different, because it’s not like they are all the same, but you say that there is this diagnosis, a son who has a spastic disorder, there is this diagnosis, a son that is in a wheelchair because he cannot walk, it is like this. And we cannot do that). Other parents commented on the uselessness of the diagnosis, noting, “Io non ho mai dato molta importanza alla diagnosi” (I never gave much importance to the diagnosis) and

‘Importante [è] la concretezza dalla vita, può chiamarla come vuole’ (What’s important is the concreteness of the life, you can call it what you want). As seen in Chapter 6, youth also often contested autism and rejected its use as an identity. These examples show the way in which autism can serve as an identity, but also resistance to these narratives.

“Cerebral subjectivation” refers to brain discourses in which “people define themselves as autistics … because their brains are ‘wired’ in an atypical way” (Ortega

2009). It is therefore a particular type of brain discourse that values difference. As discussed in Chapter 4, professionals often saw autism as a different way of being. The 345

narrative of difference-not-deficit appeared frequently in parent and youth participant discourses. However, these differences were never discussed in cerebral terms. In fact, the only example of cerebral subjectivation in interviews is in the case of one parent who described his son’s class at school as “abbastanza brutta e c’erano… neurotipici, si chiamano?” (pretty ugly and there were… neurotypicals, they are called?). Both the pause before the word and tag question indicate that even this adoption of neurodiversity language (a framework for cerebral subjectivation) was tentative.

“Autism as a Way of Being” refers to any description in which autism is not an appendage, but something someone is. The previous three chapters have furnished ample examples of these discourses with professionals, parents, and youth. In a sense negative examples are the default – explicit but more often implicit deficit narratives. However, only one example actually struck me as a negative case, in which the participant actively contested the narrative. This non-Catholic Christian explained her hopes for the future:

In the Bible, we don’t know the day and time, but we hold the hope that there will be no more disease, no more work problems, economic crises, death. A kingdom in which there will be no more of these problems. This paradise on earth. First I saw my daughter like the other children. It’s true that she has a problem in her brain, and no one can change it, only God can give her a brain like all the others. This is my future, living on the earth with no more problems, diseases [….] I will then be able to see my daughter in reality like all the others and not living this ‘wicked life,’ in quotation marks. - Interview, Parent at Day Center, not audio-recorded

In this example, autism is not something her daughter inherently is, but is something her daughter has a result of her brain – something she will no longer have if God eliminates all problems and disease. Then, she can be like the others, in reality.

Autism Pride positively values traits of autism or focuses on positive traits.

Parents mentioned positive traits like a good memory, good intuition, and a superior, if 346

different, intelligence. They described their children with terms such as avanti

(advanced), ordinato (organized), etico (ethical), and even furbo (clever, wily). One parent also described the book Né Giusto Né Sbagliato, the Italian translation of Paul

Collins’ Not Even Wrong (Collins 2004; Collins 2005). According to my notes from the unrecorded interview, her reading of the book was as having said ‘magari senza autistici non ci sarebbe stata l’evoluzione – scienze autistiche’ (maybe without people with autism there wouldn’t have been evolution – autistic sciences). Certainly the book has strong themes of autism pride.62 Youth described themselves as buona (good), intelligente

(intelligent), avanti (advanced), superiore or meglio degli altri (better than the others), having “nerd power,” and even una nuova specie di essere umana (a new species of human being). One youth described his fear as follows: “Mi fa paura che la gente pensa che io sono diverso in senso negativo ma secondo me io sono diverso in senso positivo”

(I am afraid that people think I am different in a negative way but in my opinion I am different in a positive way). These statements demonstrate pride in autism.

As with “Autism as a Way of Being,” one could argue that negative cases are the default implicitly. However, I also identified three explicit negative examples. One youth called his diagnosis “more a curse than an advantage” due to the way it hindered him in getting a driver’s license. One parent expressed disinterest in her son’s autism pride explanations of famous people with autism. Another parent went further, ultimately rejecting such pride:

will tell that with time it has bothered me more, the conversation about famous people, because it is evident that the reality for people with Asperger’s Syndrome is not of excellent but a more difficult prospect [….] If in the beginning, if you

62 For example, it is recommended by the United States “Sunrise Group” (not to be confused with the Sonrise Program intervention) on their June 18, 2014 post celebrating “autistic pride day” (Crainer n.d.). 347

want, I had a bit of consolation thinking about these famous people with Asperger’s Syndrome, [but] an always more profound awareness of what Asperger’s Syndrome is, also knowing so many people, so many kids with Asperger’s Syndrome, brought me to really be disgusted with this type of thing, or actually, to be always more bothered by people who have a pride in being Asperger. - Interview, Parent at Social/Recreational Group

Autism as Normal argues that “we are all the same.” When using this discourse, parents translate autistic behavior, explaining it in terms of neurotypical behavior and asserts is comprehensibility. For example, one parent describes her son’s resistance to identifying colors. She noted that he likes blue, and calls everything blue when asked,

“Anche se sa perfettamente che è rosso” (Even if he knows perfectly well that it is red) and will say red if pressed. She explained, “In maniera come da dire ‘non mi rompere le scatole, [con] questi colori, non voglio saperne, non mi interessano, ecc ecc.’” (In this way it is like he is saying ‘don’t get on my nerves (lit., don’t break my boxes), [with] these colors, I don’t want to know, it doesn’t interest me, etc etc.’). Some parents translated their children’s experiences through metaphor, comparing autism to a foreign language. One explained, “Come se io vado in Francia, mi trovo lì a Parigi. Parlo con qualcuno, non so il francese, quello mi parla in francese” (Like if I go to France, I find myself in Paris. I speak to someone, I don’t know French, he speaks to me in French). In another example, a parent compared autism to the habits of smokers:

“Normal” obsessive behaviors, in quotes, for example those that smoke. Most of those that smoke, they devote themselves to [doing so with] an entire pack of cigarettes. As long as there are cigarettes in the pack I continue to smoke but I can accept that if I finish the pack, however, I am done. Therefore there is a form of self-discipline as a part of the psyche and in these kids with autism it is particularly moved, particularly revealed. - Interview, Parent at Residential Center

Another way parents normalized autism was to explain how people with autism were just 348

the same as people without autism. Chapter 5 addressed this theme, when parents normalized their children’s attendance at day or residential centers as being like work or having their own home and when one mother explained to her son how neither he nor she could meet celebrity women. In short, as one parent at a day center explained in an unrecorded interview, people with autism ‘Come tutte le persone, normali o no, vivono loro, con le loro possibilità e capacità’ (Like everyone, normal or not, they live their own

[way], with their own possibilities and capacities). Parents also talked about autistic experiences as perhaps extreme versions of non-autistic experiences.63 For example,

Everyone, I think, we are very convinced in this family that this goes even for so- called normal people. They are normal people, maybe very intelligent, paralyzed by anxiety, by nervousness, by an inability to decide. With someone with autism, oh, you see it so much more! - Interview, Parent at Residential Center

Youth normalized autism as being just a trait like any other. One youth explained that having autism was normal, like having a certain eye color. As another youth told me when I asked what his diagnosis meant for him at school and work, “secondo me io vivo come una persona normale” (In my opinion, I live like a normal person). These examples assert a different type of normality for people with autism. Autism does not need to be translated into “normal” language – it already is normal for these youth.

As above, the opposite of this theme may be read as the default. However, there were three counter-examples. One youth explained that he did not feel very “Asperger” but instead felt “normale,” which implied a difference between Asperger’s and normality.

Another youth complained about parents who ask that their children be treated as

63 See also Cascio (2012), in which a mother/professional in the United States defines autism as “normal behavior to an extreme that precludes other normal behavior.” 349

“normal,” although in the context of complaining of the hypocrisy he saw when they later said their children should not be held accountable for their actions due to their disability.

In a more clear-cut negative case, a parent told me about her difficulties at parent meetings with mothers who “non accetta i deficit” (don’t accept deficits), whereas she in contrast explained, “invece io sono cattiva, vabbé, dico mio figlio non è uguale agli altri”

(I am mean, fine, I say that my son is not the same as the others).

The social model of disability refers to autism being understood as a mismatch between person and environment. Chapter 6 reveals that many youth vehemently supported this social model perspective, finding Asperger’s to be a catch-all diagnosis that doctors give to all sorts of people they don’t know how to diagnose otherwise.

Chapter 5 reveals that parents support the social model of autism as well, though in a different way. Rather than contesting the utility and meaningfulness of an autism label, parent narratives address this theme when parents discussed autism as a mismatch between “their world” and the world in which people with autism were expected to function. As one parent explains, “Il problema più che altro [è] che non possono fare una vita normale in questa società. Però non è neanche colpa loro” (The problem more than anything [is] that they cannot have a normal life in this society. But it’s not their fault).

One parent summarizes this view in her hopes for the future:

It seems to me that it would be worth it to have the necessary funds to do the research necessary to help this population, which is already becoming a population of special persons. In such a way to find a better compatibility between our world and theirs. - Interview, Parent at Social/Recreational Group

Another parent similarly explained:

There was this expectation to have a normal daughter that behaves like all the others. And for this I say that respect was a little bit the key at the time. And 350

therefore at any rate having a diagnosis, an awareness of the problem, means that it’s up to us parents to change, to find the right context, a better context, for the kid, and not hammer away at them so that on all counts, at all costs, you enter into that premade context. - Parent at Social/Recreational Group

Parents also invoked this theme when comparing people with autism to Martians or aliens. In these examples, parents identify the problem with autism not in the person with autism, but in the incompatible world. This theme is reflected in the environment of autism-specific services, all of which seek to create structure that is favorable to people with autism – sometimes to change them in the sense of helping them learn, but with the focus of change first on the environment and second on the person.

Again, the opposite could be assumed to be the default. One youth, who did not identify as autistic himself, explicitly rejected the social model of autism, disagreeing with the sentiment “he’s special because it’s the others who don’t understand him.”

Autism functions as an identity not only for those diagnosed, but for the whole family. I use Stuart Murray’s (Murray 2008) term “the family with autism” to refer to identification as an “autism parent” – an individual identity based around autism for parents of people with the diagnosis, not people with the diagnosis themselves. As one parent succinctly explained, “è diventato il tuo modo di vivere, della famiglia, non del figlio solo” (It became your way of living, for the family, not just the child). Parents invoked an identification with an imagined community of autism parents when they spoke of their experiences as “come tutti genitori, credo” (like all parents, I believe), in third person in terms of a generic genitore (parent), and similar phrases. These parents were confident speaking for all parents, or a generic parent, while speaking for themselves. A few parents also mentioned this impact extending to grandparents and 351

siblings, talking about these family members also as parts of groups of autism grandparents or autism siblings. Parents also invoked this theme when talking of others, such as the woman who encountered a grandmother on vacation who offered to look after her son simply because her own grandson had autism, and she identified with the family immediately (the mother did not leave her son with this stranger). Parents also spoke highly of renowned professionals who began working on autism after their own child was diagnosed, thereby taking up an identification with them. Although not every participant expressed these sentiments, no parents or youth explicitly rejected this theme.

Collective Identities and Socialities

Collective identities and socialities refers to membership in less imagined communities and more to collectivities around autism. Social group formation refers to formal or informal networks of patients or parents who share resources, information, and support. Seventeen parents (45%) reported participating in formal parents’ groups, either groups linked to (or even founding) specific services, national parents’ organizations, or outside support groups. As one parent at a Residential Center described, “Mi faceva bene consultarmi con altri genitori, mi faceva bene parlare. Ho sempre partecipato io alle riunioni per genitori per consultarci tra di noi, per darci una mano” (It does me good to talk to other parents, it does me good to talk. I always participated in parents’ meetings to talk amongst ourselves, to help us out). As noted in Chapter 5, ten parents took this participation further by founding their own organizations, volunteering in established organizations, serving on the directing boards for such organizations, or pursuing careers related to autism and other disabilities. Similarly, six professionals interviewed for this study were themselves parents of children with autism (sometimes before, sometimes 352

after they chose their careers). These 16 instances of parent/advocates and parent/professionals reflect a type of collective identity and sociality based on biology, in which having a child with autism connects parents to a social and professional network of other such parents.

Parents also made informal connections with other parents of children with autism in and out of services, networking with parents and developing friendships. Informal networks also arose, as one parent described, “Conosco un sacco di genitori, ma non è che fanno parte di un’organizzazione che faccio. In questo ambiente di disabilità, immagino che ci si conosce quasi tutti” (I know a ton of parents, but it’s not like they take part in any organization that I go to. In this environment of disability, I imagine that one knows basically everyone). Parents expressed their knowledge about autism, services, and administrative aspects through reference to what they had learned from other parents or people with autism, frequently citing these formal and information connections. Sometimes, professionals facilitated introductions and the formation of even informal networks:

I thought she would just give me this phone number and tell me what I Had to do. Instead we started talking, she told me that she was also separated [from her husband], that she had however found a new partner, she talked about… the problems of her son, who is 18 now, [name]. Uh, so we stayed on the phone two hours. (laughing). We talked about everything in two hours. In fact, now she said that… not this Sunday but maybe next Sunday we will meet, because, I said, come on, let’s meet, get coffee while they are at [the service]. - Interview, Parent at Social/Recreational Group

Even a few years ago a mother with a young girl, they directed her to us… a bit… she knew [our daughter], with the same problems as [our daughter], the same mannerisms, a lot… but she was still a minor. And they had to distance her from her mother, and she called me, crying, and I told her, “Look, it’s hard, but look at our experiences, at the end you will see.” And now I heard from her after a while, and she told me, “Look, you were right.” - Interivew, Parent at Residential Center 353

Parents sometimes considered services as a way for youth to similarly build social connections with other people who were like them. In Chapter 5, we heard from a parent who preferred an autism-specific service so her son could meet others and they could

“help one another, exchange something.” Another parent at a Social/Recreational Group explained, “L’ideale per lui sarebbe trovare qualcuno che ha delle problematiche simili ma che però abbia desiderio di fare amicizia” (The ideal for him would be to find someone that has similar problems but that wants to make friends).

Others, however, describe a distinct lack of social group formation. Parents specified that they didn’t have “dei dialoghi con altri genitori. Sì, qualcuno lo conosco, mi parlano, però non più di tanto” (many conversations with other parents. Yes, I know some, they talk to me, but not much). Several parents similarly noted that they did not know the other youth or the other parents at the services they attended very well, if at all.

One parent noted the presence of a parents’ association, but lamented the lack of group formation:

There isn’t a group. There’s the association, but there isn’t a group. A phone call… I spent a month and a half going back and forth from the hospital, and I never received a phone call. Not from the parents, not from the teachers at school here, eh? Look, this displeased me a bit. - Interview, Parent at Day Center

When parents discussed their goals for youth, as described in Chapter 5, autism- specific settings were not always among them. Parents may value other components of the setting over autism-specificity for social purposes. One parent expressed concern for a peer group based more on age than diagnostic characteristics:

[My son] must go to a community for people with autism. Because this is what he needs. Or in a community at any rate for people with disabilities because I am not going to say that they must live with people with autism. They must live with 354

other people their own age. They can live with people with any type of disability, in my opinion. They don’t need to be among themselves because it’s not like they appreciate each other much, people with autism, (one for the other), really they don’t see, right, but they need to stay somewhere where there are people their own age. - Interview, Parent at Day Center

These examples demonstrate resistance to the idea of autism as a basis for social group formation.

Unsurprisingly, youth at Social/Recreational Groups stressed the positives of social group formation in their attendance – making friends and learning to relate to people. Some youth linked their socialization to the autism specific nature, as we saw in the previous chapter. Yet, as parents reported in Chapter 5 and youth verified in Chapter

6, youth in autism-specific settings often interacted more with staff and volunteers than with each other. The presence of groups of people with autism did not necessarily mean social groups of people with autism.

Moreover, youth themselves expressed conflicting opinions on not only the role of autism (or specifically Asperger’s) as an identity, but also the way that identity could or should be mobilized in a group context. These conflicting opinions arose especially clearly in a discussion of a particular Asperger-focused film that one group watched. A small discussion followed, and some participants did identify with the protoganist and compare their experiences. They also asked questions of the neurotypical characters behaviors and tried to understand them. However, one of the young men complained that the Asperger-focused content of the films was inappropriate. He explained:

[T]hey only choose films about how being mentally different makes life hard. People don’t want to sit around and watch films about how their life will be hard. In Charlie and the Chocolate Factory, Willie Wonka is weird, so he has trouble relating to people. Adam is weird, so he has trouble relating to people. Big Fish… (Trails off) 355

[....] Forrest Gump is retarded, so he has trouble relating to people! I know this is an Asperger center, but not everything has to be about how we are weird! [....] You don’t go to a place for handicapped people and watch films about how not having legs makes your life hard. [Fieldnote excerpt]

His views were not necessarily those of the mainstream. Certainly young adults with

Asperger's had recommended and critically praised some of the selected films. Others did support an Asperger’s focus for many activities. This young man also participated in an

Asperger’s focused discussion group, but he described it not as a place to discuss

Asperger's, but a place where ‘discutiamo come migliorare Social/Recreational Group 2’

(we discuss how to improve Social/Recreational Group 2). Others did focus on the

Asperger’s aspects of these activities, such as a man this youth complained ‘want[s] to add the prefix Aspie to everything.’ For some people, this collective identity was important; for others, it was actively resisted.

The other codes refer to activism and advocacy behaviors – often in groups but at times enacted by one individual mobilizing the claim of membership in a collectivity

(e.g., citizens with autism). Rose describes three forms or characteristics of biocitizenship: informational, rights, and digital.

In informational biocitizenship, patients/parents use “specialized scientific and medical knowledge of one’s condition” (Rose 2007:135) – I use it here to mean the role of collectivities and parent networking in sharing information both scientific/medical and administrative. Participants never offered counter examples, and indeed described several cases of informational exchange from other youth or parents. Two youth heard about the social/recreational activity group through personal networks of people on the spectrum, friends of friends. Parents got a lot of administrative information from other parents, for example: 356

Ah, In Italy it’s a bit different in the sense that there isn’t this paper that says, “[my son] has autism” and they tell you “you have rights to this, you have rights to that,” here you have to do it yourself in Italy. In the sense that when I went to that center when [my son] was two years old, I learned from another mother than [my son] could have the right to a little pension of 200€ which they call the allowance. I didn’t know anything. When I returned I Informed myself. When (my son) found out he had autism, no one told me anything, that is, it wasn’t like, OK, if you leave the hospital they gave me the exception ticket. For the public health service. But when I had this paper, I don’t know anything. 5, 6 years ago, when I came to the [service], the association, I saw children like [my son] or even more serious than [my son] that had different pensions, that had passes for their cars. I said, “but [my son] no” because these things, you know them when you are in the association, when you are among friends. No one comes to you, there isn’t much information in Italy. There isn’t a paper that says “[your son] has autism, you must do this this this this.” - Interview, Parent at Social/Recreational Group

Parents also received practical information, and described talking with other parents about solving daily life problems like finding comfortable clothing their children would wear, and so on. In additional to one time informational exchanges, some parents specifically followed the educational path of a family who went before them, a family with a slightly older child. These long-term exchanges form a type of informational biocitizenship. Parents who participated in associations also exercised informational biocitizenship when they provided information to other parents, for example:

We organized some, um, training courses for the school teachers [....] And they were both theoretical and practical courses, and we didn’t stop at just TEACCH. Because in our opinion one association that represents parents must not be sectorial, that is, the association must not say “only TEACCH works.” Because some parents, let’s say, had some good results with facilitated communication and believed in it. And well, as an association, in our opinion we had to do not just what we as the association thought right but listen to all of the camps a bit. - Interview, Parent at Residential Center

This parent discusses not only providing information, but providing it in a “democratic” way, so to speak, ensuring that parents can access a broader range of information than might be available elsewhere. 357

In rights biocitizenship. patients/parents engage in “campaigning for better treatment, ending stigma, getting access to services, and like” (Rose 2007:135). Parents exercised rights biocitizenship when they filed denuncie (reports) against schools/services or individuals who mistreated them or their children, when they advocated (sometimes with lawyers) to get the proper number of hours of support staff at school, to keep their children in school, to graduate their children with the proper credentials,64 and so on. Parents who participated in associations worked to train teachers and educatori about autism, raising their awareness and improving their professional competencies, and to monitor the activities of particular services as an advisory committee. Though these actions were mostly limited to parents, recall also the mother in

Chapter 6 who described her son’s awareness raising efforts through creating a film about

Asperger’s. In these examples, parents and youth fought to raise awareness, access state- given rights, and improve services.

There were also, however, counter examples, in which parents explained their reasons for not fighting for rights or access. Some felt they could not, because they did not have enough power against certain administrators or doctors, particularly if they were in charge of multiple aspects of their child’s care. Others, however, did not thing it was necessarily the right balance for their child’s wellbeing:

Fighting with professionals, in my opinion, would never have been a good thing. At most if I wasn’t satisfied, more than saying so, I would let it go and look for something else. - Interview, Parent at Residential Center

Therefore when we found the right teachers it was really a good work, because then I always sought to collaborate with the school. Actually, if they told me, “look tomorrow” as to say “it’s better than he leaves first because the support

64 Diploma versus certificate of attendance, explained in more detail in Chapter 2. 358

teacher isn’t there,” I took him home. I didn’t insist on leaving him there where maybe they would have put him in a corner. Regardless of the fact that he has all his rights but I always privileged [my son]’s wellbeing over the rights that at any rate he could have had. - Interview, Parent at Residential Center

In digital biocitizenship, patients/parents participate in online communities around the condition and find information, resources, and connections online. Parents reported searching for services and doctors online, informarsi (informing themselves) through online research, and participating in online listservs (especially linked to social/recreational activity groups). Some older parents specifically explained that the internet had opened up a lot more information than they had when their children were first diagnosed. These comments still support the idea of digital biocitizenship, which these parents identify as now present and lament not accessing. No parent specifically resisted narratives of digital biocitizenship. Although youth did report using the internet, recall the youth in Chapter 6 who explains, “That is, you can’t go on Facebook and write

“people with Asperger’s” and see some friends that you can look up.” In these examples, the internet did provide an important avenue for social group formation and informational exchange, but also had limitations.

I also include a code for activism, distinct from rights biocitizenship in that instead of campaigning for access to resources and services provided by the state or other actors, patients/parents create their own grassroots services and movements or volunteer for existing associations. Three of the sites in which I conducted fieldwork were founded by parents, embodying this ideal. Several parents participating in this foundation directly or as peripheral supporters or funders. Parents also volunteered in these and other services, particularly social/recreational activity groups (autism specific and not) that 359

required chaperones. Parents also worked to create their own plans, with greater or lesser state support. As one mother explained:

My expectations are to succeed, are very ambitious in reality. To succeed to make an absolutely respectful world around her. That is, I really have this expectation. And therefore I will invent something if she doesn’t manage to follow the scholastic path, I will invent a school tailored to her. I will build a job tailored to her in such a way that she can have a paycheck but be very content. These seem like children’s dreams but I believe in them a lot. - Interview, Parent at Social/Recreational Group

This mother expressed a willingness to move into activism if official channels did not support her daughter.

At one Social/Recreational Group, youth brought several ideas to the table and took a leading role in planning activities. Youth in interviews expressed goals to organize vacation trips, classes on topics of interest, fundraisers, and film nights. People with autism also served as tutors or volunteer aides for other people with autism or other disabilities, as discussed in Chapter 4 under the framework of auto-mutuo-aiuto. Both parent and youth examples show the presence of activism and volunteerism.

Scholars of these theories will note that there are some I exclude, most prominently Rose’s “economies of vitality” and all aspects of bioeconomics

(bioavailability and so on). My study was designed to focus on identity and subjectivity.

While these things relate, they are tangential to the present discussion. This section has shown the major themes of new biopolitical theory that are relevant to identity and subjectivity, and has fleshed out examples and negative cases. The next section complicates new biopolitical theory by discussing the relative weight of different themes, demonstrating the co-existence of both positive and negative cases, and analyzing the overlap between particular themes. 360

Section 2: Complicating New Biopolitical Theory

The previous section defined new biopolitical theory, explicating its themes and providing a more nuanced understanding than previous literature. This present section complicates new biopolitical theory, exploring the relative weight of these themes in participant narratives. It demonstrates the complexity of new biopolitical theory in the data through several key examples. It explores situations in which positive and negative biopolitical themes co-exist in a single narrative. This section demonstrates that a more nuanced understanding of new biopolitical theory focused on multiple themes reveals how the theory applies as well as the limits to its applicability, crafting a more locally nuanced understanding of new biopolitical theory and refuting previous claims that these theories are only applicable in “Europe and North America” by demonstrating that they both do and do not apply in the Italian context. These findings are in line with anticipated

“threats” to new biopolitical theory explored in Chapter 1 – deinstitutionalization and integration, lack of a consumer role, and “social-embeddedness” models of doctor-patient interaction.

Frequency of Themes

361

Figure 5: New Biopolitical Theory Themes

New Biopolitical Theory Themes 18 16 14 12 10 8 6 4 2 0 Molecularization Somatic Expertise Individual Identities Collective Identities and

Socialities Average Average per % Interview (N=48) Theme

PRO CON

Figure 6: Molecularization Subthemes

Molecularization Subthemes 1.2

0.8

0.6

0.4

0.2 Average Average per % Interview (N=48) 0 Geneticization Neurochemical/Neurostructural Microbiologization Selves Subtheme

PRO CON

362

Figure 7: Somatic Expertise Subthemes

Somatic Expertise Subthemes 8 7 6 5 4 3 2 1

0 Average Average per % Interview (N=48)

Subtheme

PRO CON

Figure 8: Individual Identities Subthemes

Individual Identities Subthemes 0.6

0.5

0.4

0.3

0.2

0.1 Average Average per % Interview (N=48) 0 Autism as Cerebral Autism as a Autism Pride Autism as Social Model The Family Identity Subjectivation Way of Being Normal of Disability with Autism Subtheme

PRO CON

363

Figure 9: Collective Identities and Socialities Subthemes

Collective Identities and Biosocialities Subthemes 3.5 3 2.5 2 1.5 1 0.5 0 Social Group Information Digital Rights Activism and

Formation Biocitizenship Biocitizenship Biocitizenship Volunteerism Average Average per % Interview (N=48) Subtheme

PRO CON

The figures above demonstrates the presence of themes and negative examples, calculated by averaging the percentage of each interview that was coded with each theme

(including those interviews in which the theme was completely absent). It considers interviews with both parents and youth, and youth interviews both individual and in the focus group. The most commonly discussed theme was Somatic Expertise, followed by

Collective Identities and Socialities, followed by Individual Identities, and finally molecularization. Negative cases actually exceeded positive examples in two cases: geneticization and autism as identity.65

This relative balance of themes indicates we might question the ‘bio’ in biosociality. The themes of Molecularization, Somatic Individuality, and Cerebral

Subjectivation specifically address biology. Molecularization is the least present theme overall. Within Somatic Expertise, Somatic Individuality is one of the least present

65 As the coding schema was designed on new biopolitical theory literature, it is designed to capture new biopolitical theory and also identifies negative cases. It is not designed to truly compare presence versus absence of these themes as absence in and of itself is hard to operationalize. 364

themes, along with Pilgrimages of Hope. However, somatic individuality has several negative examples as well. Within the category of Individual Identities, cerebral subjectivation is by far the least prevalent theme.

Although most participants cited organic, biological, neurological, or genetic causes of autism (as reported in Chapters 5 and 6) they did not often talk about their experiences in a biological frame. While examples of somatic individuality, such as those presented in Section 1, outweighed negative cases, the negative cases were one of the most prevalent negative themes. Participants rejected somatic individuality when they questioned whether a characteristic was linked to the diagnosis or just a personality trait and when they discussed the meaningless of the diagnosis, as discussed above. The weakness of biological themes raises the question of whether the sociality expressed by participants – factors of social group organization, patient literacy, authority of expertise, and responsibilization which are definitely present – is really “bio” sociality. This finding is in line with Eyal and colleagues’ (2014) observation that autism treatment, intervention, and care is not biomedicalized, particularly because of the “low tech” strategies involved (Hart 2014). Because it is not biomedicalization, Eyal and colleagues argue, it is not Rabinow’s biosociality (which is just one form of the politics of life). The authors nonetheless identify important forms of biosociality, while challenging both the biomedicalization and geneticization of autism which are important components of some theories of biosociality and the politics of life itself.66 My work unpacks in more detail

66 For other examples of scholars who have problematized the “bio” in biosociality, see C. Roberts’ (2007) concept of bio-sociality which reflects her “desire to insist that the implosion of the biological and the social is not as advanced or wide-ranging as [Rabinow, Rose, and Novas’s] work sometimes implies”; and Marslands’ (2012) concept of (bio)sociality in Tanzanian social groups based around HIV, where Marsland emphasizes the social. For another variation, see Beck and Niewohner’s (2009) “bio-cultural intimacy,” 365

the various components of new biopolitical theory, articulating how individual themes may be more or less present. The next subsection turns to the overlap of these themes in my data.

Overlap of Themes

By breaking new biopolitical theory into its component parts, this study can look at the overlap between themes. Within positive examples of new biopolitical theory, several domains substantially overlapped. Collective Identities and Socialities substantially overlapped with Somatic Expertise.67

The domain of Individual identities also substantially overlapped with Somatic

Expertise.68 Specifically, The Family with Autism overlapped substantially with Patient

Literacy, as parents frequently sought out literature written by people with autism and their families.69

The domain of Molecularization also overlapped substantially with Somatic

Expertise.70 Specifically, Neurologization and Somatic Individuality frequently overlapped.71 Participants exercised somatic individuality often in terms of brain discourses.

which merges biosociality with Michael Herzfeld’s (2005) cultural intimacy to “analyse historical, cultural and social contingencies in the way biomedical options are appropriated and embedded into everyday life via meaning-making practices.” See also E. Roberts’ (2008) argument against biosociality’s applicability in Ecuador due to Ecuador’s local biology which does not hold the same meaning as the biology of biosociality.f 67 35% of instances coded “Collective Identities and Socialities” were also coded “Somatic Expertise.” 11% of instances coded “Somatic Expertise” were also collected Collective Identities and Socialities.” 68 24% of instances coded “Individual Identities were also coded “Somatic Expertise,” though only 4% of instances coded “Somatic Expertise” were also coded “Individual Identities.” 69 23% of instances coded “The Family with Autism” were also coded “Patient Literacy,” though only 6% of instances coded “Patient Literacy” were also coded “The Family with Autism.” 70 50% of instances coded “Molecularization” were also coded “Somatic Expertise,” though only 5% of instances coded “Somatic Expertise” were also coded “Molecularization. 71 46% of instances coded “Neurologization” were also coded “Somatic Individuality.”34% of instances coded “Somatic Individuality” were also coded “Neurologization.” 366

The domains within Collective Identities and Socialities strongly overlapped.

Social Group formation overlapped with Informational, Digital, and Rights

Biocitizenship. In other words, participants who described one type of Collective Identity or Sociality often described more than one.

Perhaps more interesting are the several instances in which positive and negative examples of new biopolitical theory overlapped. 11% of the instances coded positively for biopolitical theory were also coded negatively, and 46% of instances coded negatively for biopolitical theory were also coded positively. Common areas of overlap occurred within Somatic Expertise,72 particularly in the relationship with pastoral keepers.

Interactions with professionals were overwhelmingly important to participants, unsurprisingly. Whether or not these professionals acted as Pastoral Keepers played heavily into participants’ discussions of Experiential Expertise and Responsibilization.

Parents were often responsibilized in the absence of pastoral guidance,73 and the presence of pastoral guidance often overlapped with negative examples of responsibilization74 as well as experiential expertise.75 This situation is strikingly similar to Valentine’s (2010)

Australian study, in which parents made consumer choices about treatment and intervention “in response to shortfalls in resources.” Valentine notes, however, that patient choice and activism still effectively lead to new forms of identity and community

(such as, I would argue, those described by new biopolitical themes of individual

72 12% of instances coded “Somatic Expertise” were also coded “Somatic Expertise CON” and 52% of instances coded “Somatic Expertise CON” were also coded “Somatic Expertise.” 73 25% of instances coded “Pastoral Keepers CON” were coded “Responsibilization” and 6% of instances coded Responsibilization” were coded “Pastoral Keepers CON.” 74 85% of instances coded “Responsibilization CON” were also coded “Pastoral Keepers,” whereas 14% of instances coded “Pastoral Keepers” were coded “Responsibilization CON.” 75 57% of instances coded “Experiential Expertise CON” were also coded “Pastoral Keepers,” whereas only 2% of instances coded “Pastoral Keepers” were also coded “Experiential Expertise CON.” 367

identities and collective identities and socialities).

Although pastoral keepers – that is, autism professionals including doctors, teachers, and social workers – often did guide families and help them “understand” autism, almost as often they did not. Parents lamented not being told anything about the diagnosis or about particular therapies. They lamented being kept out of rooms where therapies were conducted. On the other hand, they praised professionals who communicated often. Situations often arose where pastoral keepers did guide parents, but did not responsibilize them. Parents often explained their choices in terms of who suggested the services or therapy to them. Many parents made decisions about therapies and services not based on their own research and decisions but because ci hanno proposto

– they proposed it. In several instances parents continued down certain paths – often pharmaceutical, but also sometimes therapeutic – at all or longer than they wanted to specifically because their doctor or another professionals told them to.

Several of the aspects of new biopolitical theory that are found lacking in these discourses tie closely to important factors in the Italian context. As discussed in Chapter

2, several factors in the Italian context may limit the applicability of new biopolitical theory. Firstly, in the 1970s Italy initiated a world-renowned movement of deinstitutionalization (Scheper-Hughes and Lovell 1986) followed by policies of social and educational integration. Secondly, Italian medicine remains, for the most part, non- privatized; therefore patients lack the consumer role seen in systems like U.S. healthcare

(Cola and Crocetti 2011). Thirdly, doctor-patient relationships are often characterized by what some might call “paternalism” and Gordon and Paci (1997) call the “social- embeddedness narrative.” 368

For these reasons, new biopolitical subjectivities may be minimized in the Italian context. Biosociality is exclusive by its specificity, whereas social integration is inclusive. A lack of a consumer role for patients may minimize their mobilization of lay expertise, as would paternalistic doctor-patient relationships. This section has demonstrated that biosociality may be limited by the lack of a strong emphasis on its

‘bio’ components. Parents and youth were ambivalent about autism specific services, not always seeing them as the right social context for people with the same type of condition.

In fact, many parents and youth noted that they preferred to interact with staff than each other. This ties into the issues of doctor-patient relationships. These findings indicate that parents’ and patients’ use of new biopolitical modes of engagement may be a response to a lack of professionals’ use of these modes of engaging with them.

This section has looked at the complexity of new biopolitical theory by looking at the ways the individual themes defined in Section 1 overlap. Positive and negative examples of biopolitical theory often overlapped in a single narrative, even a single passage. This finding demonstrates that it is not enough to say that new biopolitical theory does or does not apply in a particular context, but to understand how it does or does not apply. In the Italian context, much of this complexity comes from parent/patient- professional relationships and negotiations of the role of expertise between them. Another level of complexity comes from the extent to which autism is or is not understood as a discrete biologically-based diagnosis in the Italian context, rendered less important by the general disability nature of Italian integration laws and policies.

Section 3: Whose New Biopolitical Theory?

This final section turns to the question “whose new biopolitical theory?” It 369

tentatively explores potentially significant predictor variables that may impact the extent to which an interviewee expressed the themes of new biopolitical theory. Most studies of new biopolitical themes focus, quite rightly, on thematic analysis and the explication of participant narratives. These methods are in line with the meaning-centered literature from which these studies emerge and the relatively homogenous, focused samples that best address this literature. They are also the analytical methods to which I dedicate most time in this dissertation. Indeed, statistical analysis is limited in this relatively small and non-representative sample. However, I would be remiss if I did not attempt to comment on possible demographic factors impacting the relevance of new biopolitical themes for participants in my study.

Although a few studies have looked at variation in parents’ mobilization of new biopolitical theory, there is little data with which to compare my own work, which generates hypotheses for important future research that fills a notable gap in the literature.

In a study of parents of children with Down Syndrome, Rapp (2000a:298) found, “In

New York City, active members [of support groups] are likely to be middle-class, white, and parents of first children, or parents with the financial resources to use a host of commercial services, including nannies and baby-sitters. Far less likely to rely on the support groups are parents whose child with Down syndrome is a younger sibling; who do not have much discretionary time or income; or who come from community backgrounds with strong church or ethnic-group affiliation.”

My study looks at the following variables: parent age, parent sex, parent interviewed singly or as a couple, parent income, parent religion, child age, child sex, child being verbal or non-verbal, and type of site child attended. I have operationalized 370

these variables as follows:

Parent Age: Age in years of the parent. This variable is complicated by the presence of couples. Due to the predominance of mothers over fathers, the mother’s age was used for the nine couples. The average of all mothers’ ages (55) was used in place of the actual age of the three fathers interviewed alone.

Parent Sex: Couples were marked as female.

Couples: A separate variable called couple accounted for the male. This variable was created as a yes/no response, with the nine couples being marked yes.

Religion: In Chapter 2, I identify participants’ religions, based on open-ended responses, as Catholic, Non-Practicing Catholic, Other Christian, Other Non-Christian, and Atheist. However, as Chapter 2 shows, there is only one respondent identifying as

Atheist and two each as Other Christian and Other Non-Christian. For correlations, I therefore categorized religion as Catholic and Non-Catholic.

Income: Income was categorized in a scaled range: €0 - €15.000, €15.000 -

€28.000, €28.000 - €55.000, €55.000 - €75.000, more than €75.000, and Don’t Know/No

Response/Not Asked.

Child Age was classified in years, Child Sex as male or female, and Child Verbal or Non-Verbal via the procedure described in Chapter 3.

The site type was categorized as Day, Residential, or Social/Recreational.

Although these categories are closely related to specific site (the seven described in

Chapter 2), there are some notable exceptions. Because Residential Centers may also offer Day Center services, not all participants recruited from Residential Sites currently attended a Residence. Therefore, two interviews recruited from Residential Centers were 371

categorized as “Day Center” respondents. Moreover, one participant recruited from a Day

Center also attending a participating Residential Center. This respondent was categorized as “Residential,” giving predominance to residence. Both of these categories were organized into dummy variables with yes/no responses for calculated correlations.

The output variables for these regressions were the percentage of the interview coded with new biopolitical themes. This rough metric gives some idea of the relationship between demographics and the applicability of new biopolitical theory.

However, the open ended character of semi-structured interviews means that the metric can only give a general idea and does not measure these associations with precision. The following results should therefore be considered tentative and hypothesis-generating, not hypothesis-testing.

I calculated correlations using Pearson’s regression. Overall, few areas of statistically significant association were identified through this analyses. However, those that were identified have implications for the study of new biopolitical theory: Child Sex and Site Type.

Having a child who was female was correlated with a higher percentage of the interview being coded with new biopolitical themes, r = .331, p < .05. Finding child sex to be a potentially important indicator of new biopolitical theory highlights yet another implication of the gender imbalance in autism, discussed in Chapters 1 and 2. The experiences of women and girls with autism may be different from that of men and boys in a way that substantially impacts the utility of new biopolitical themes. There may be several reasons for this difference. To investigate these specificities in more detail, I also looked at the percentage of the interview coded with each of the four subthemes: 372

molecularization, somatic expertise, individual identities, and collective identities and socialities. Having a female child was correlated specifically with themes of Somatic

Expertise, r = .450 p < .05. As discussed in Section 2, Somatic Expertise was a theme in which negative and positive examples often overlap, warranting a more detailed investigation. Specifically, having a female child was associated with the themes of professional expertise: Pastoral Keepers, r = .370, p < .05, and Pilgrimages of Hope, r =

.329, p < .05. These results suggest that parents of girls and women with autism spectrum conditions may search farther (making pilgrimages) to find appropriate treatment and services for their daughters. Further investigation into gender differences and new biopolitical theory may shed light onto the reasons for this difference.

Site type was also significantly associated with the presence of new biopolitical themes in interviews. Specifically, participants recruited from Residential Centers and

Social/Recreational Groups expressed more new biopolitical themes than those who were recruited from Day Centers.76 Looking at subthemes, the site not being a Day Center was correlated with the percentage of the interview coded for Collective Identities and

Socialities, r = -.497, p < .05. On the other hand, themes of Collective Identities and

Socialities were correlated with the site being a Social Group, r = .518, p < .05. The site being a Residential Center was correlated with higher percentages of the interviews being coded for Individual Identities, r = .383, p < .05.

These results suggest that structural factors may impact the relevance of new biopolitical theory to participants. Indeed, Residential Centers and Social/Recreational

76 Percentage of the interview coded with new biopolitical themes was correlated with the site not being a day center, r = -.394, p < .05 373

Groups often involved greater parent activism to get started (both Social/Recreational

Groups and one Residential Center were created through the efforts of parents’ associations). These parent activism responded to a lack of services already provided by the State. As Valentine (2010) notes, such action in response to a lack of resources may generate new forms of individual and collective identity. The State does, on the other hand, provide a range of Day Centers either directly or through accreditation. Day

Centers are more entrenched in the Italian management of disability than autism-specific

Residential Centers or Social/Recreational Groups.

This finding, thought tentative and preliminary, points ot the importance of place.

New biopolitical theory explores the relationship between individuals and institutions, generally conceiving of the institution of biomedicine broadly conceived. This dissertation has highlighted the variation within biomedicine, not only between different nations but between different smaller institutions within Italy. As Chapter 5 shows, parents unsurprisingly had different experiences of and expectations for different types of services. This study focused on three general types of services that had autism-focused programs: Day Centers, Residential Centers, and Social/Recreational Groups. Day

Centers provided places for people with autism to go, post school-age, from roughly 9am to 4pm. Many people with autism and their parents talked about them as being similar to school or work and serving similar functions. Residential Centers provided 24/7 staff and programming, sometimes in coordination with day services. They served as not only residences but homes for people with autism, and addressed professional and parent concerns about a “dopo di noi.” Social/Recreational Groups served a younger population, providing places to gather in leisure time in evenings and weekends. They provided peer 374

group formation and friendship making opportunities. All of these services created opportunities for people with autism and their families to meet each other. However, the extent to which these meetings and groups enacted new biopolitical themes varied, as this result suggests. This suggestion makes sense in light of the different functions and daily rhythms of different services, as well as the different levels of state support and therefore the origins of different types of services. It also raises avenues for future research into the impact of different services types with the same overall biomedical system. Specifically, future research should investigate the difference not only between different autism- specific services, but also services which are mixed-disabiltiy and which are

“mainstream” or completely inclusive. Are new biopolitical themes stronger in autism- specific services than inclusive services? Such an investigation would be particularly appropriate in Italy, in which the ideology of integrazione scolastica and other policies of social and educational intergration may mitigate the influence of new biopolitical theory in contrast to, for example, the United States’ tradition of identity politics following the

Civil Rights Movement.

Correlations within the predictor variables may also provide insight into the appeal of new biopolitical theory to different types of people. Social groups were correlated with younger child age, r = -.651, p < .05, and Residential Centers were correlated with older child age, r = .502, p < .05. Unsurprisingly, Social Groups were also correlated with younger parent age, r = -.422, p < .05 (child age was correlated with parent age r = .686, p < .05). The respondent being male was also correlated with the child attending a Day Centers, male r = -.363, p < .05, but this is likely an artifact of the data in that there were very few interviews conducted with only males (n = 3). 375

These very tentative results suggest some elements that may be important in understanding for whom new biopolitical theory may be important. Understanding demographic variables may help providers and activists decide how to work with different parents, avoiding some of the stress and burden of choice Valentine (2010) describes in Australia.

I propose future research that investigates more systematically the potential themes identified in this analysis and the preceding presentation of ethnographic data. My research identifies important differences based on type of service. While my research design here focused on Day Centers, Residential Centers, and Social Groups, participants also discussed the importance of the educational context and the differences between autism specific, mixed-disability, and inclusive settings. I envision targeted survey research that incorporates these salient categories, and compares the experiences of respondents with autism and parents of children with autism based on their basic demographics (age, sex, religion) but also their experiences in these different kinds of services throughout the life cycle. Such a study will have the potential to identify factors that influence parent service choice as well as the saliency of new biopolitical modes of engagement.

Conclusion

This chapter answers research question (3), “How does new biopolitical theory apply, or not, to social organization around autism in Italy?” It does so in three ways:: it defines and operationalizes new biopolitical theory; it complicates new biopolitical theory by exploring the overlap, or lack thereof, in its four key themes; and it explores demographic factors that may affect the relevance of new biopolitical theory to different 376

participants. I argue that new biopolitical theory can be understand as composed of four main themes: molecularization, somatic expertise, individual identities, and collective identities and socialities. Future researchers can use these themes to understand the applicability of new biopolitical, or lack thereof, in different contexts with nuance that allows for the understanding of different local biopolitics under different local biomedicines. In my research context, explicitly biological themes of new biopolitical theory were found most lacking. Themes of somatic expertise were most common, but also the source of the most overlap between positive and negative examples. I find that parents and youth mobilized experiential expertise primarily in the absence of pastoral keepers, and did not mobilize experience expertise in the presence of pastoral keepers.

Pastoral keepers did not cultivate patients’ expertise. Rather, patients used experiential expertise when they did not have professional experts on whom to rely. In this sample, parent demographics were not significantly correlated with influence of new biopolitical themes in interviews. Child sex was significant, with percentage of new biopolitical themes coded in interviews being correlated with having a female child. The type of site the child attended was also significant. These results provide suggestions for future research into the factors that impact the influence and relevance of new biopolitical theory for different individuals.

Overall, my research suggests that new biopolitical theory may be shaped in reaction not to new biomedical technologies alone, as the literature sometimes suggests, but to the healthcare and social services network in which they are embedded. In this way, my research both challenges and expands new biopolitical theory, and therefore has implications for anthropological theory and scholarship beyond autism, encompassing all 377

studies of biopolitics, biological citizenships, and biosocialities.

378

Conclusion and Implications

Research Questions and Answers

This dissertation has explored how autism is defined, managed, and experienced in the Italian context. Overall, it demonstrates that the local particularity of the Italian medical system – broadly defined as including health and human services, education, and a range of medical subspecialties – impacts the way autism is conceptualized in Italy and the ways that people with autism and their families define, manage, and experience this diagnosis. The preceding six chapters have provided a detailed exploration into this health and human services network and the social world of autism in Italy. Chapter 2 provided an overview of autism history and management, including the three types of services discussed most in this dissertation: Day Centers, Residential Centers, and

Social/Recreational groups. Chapter 3 provided detailed descriptions of life inside these centers and groups. Chapters 4 through 6 answered research questions 1 and 2.

Research question (1) asks, “How is autism conceptualized in Italy?” Through participant observation at autism-specific services and a detailed exploration of the narratives of professionals, parents of youth with autism, and youth with autism themselves, this study provides several insights. The professional conceptualization of autism defints it as a constellation of symptoms in line with the DSM-IV, plus behavioral problems, rigidity, sensory and perception problems, and special strengths. The three most commonly mentioned characteristic of autism by both professionals and parents were the three characteristics of the Wing-Gould triad: qualitative impairment in social interaction; qualitative impairment in communication; and restricted repetitive and stereotyped patterns of behavior, interests and activities. The three most commonly 379

mentioned characteristics of autism by youth on the spectrum were qualitative impairment in social interaction; restricted repetitive and stereotyped patterns of behavior, interests and activities; and motor difficulties or clumsiness.

Each group also speculated on the possible causes of autism. For professionals, the top three possible causes were genetics (hereditary or non-heriditary); a broadly understood biological, neurological, or organic cause; and genetic predisposition combined with environmental triggers. For parents, the top three things they said caused or maybe caused autism were vaccines, neurological causes, or causes related to fetal development. Few youth were interviews and even fewer speculated on the cause of autism. The only cause that was raised by more than one youth (in a focus group interview) was social construction – the idea that Asperger’s specifically was a diagnosis physicans gave a wide range of people and that it was meaningless. Both professionals and parents agreed that even if the cause of autism was uncertain, it was certainly not caused by “refrigerator mothers.”

Professionals, parents, and youth all drew in varying degrees on narratives of autism as difference (but not necessarily deficit), which resonates with philosophy of neurodiversity. For example, professionals talked about autism as a modo (a way) of being, functioning, or perceiving, such as the professional who explained, “a person with autism is a person that lives with parameters different than ours.” Parents drew on this discourse as well, though fewer parents than professionals used the language of a way of being. Parents more often spoke of being with autism as living in their own world, sometimes in relationship to the idea of autism-as-difference but often to describe the characteristic of autism-as-being-isolated. However, when parents spoke to their children 380

they described autism as part of a typical human balance of strengths in weaknesses, as in the mother who stressed, “Each person is able to do some things, but is not able to do others.” Finally, youth also described autism as a different way of being or functioning, as a trait like any other physical or personality trait, and as normal. Youth also sometimes used autism pride or otherwise overtly positive narratives to talk about autism such as

“nerd power.”

Related to this conceptualization of autism as a holistic way of being, most professionals favored treatments and interventions tailored for people with autism based on their characteristics, under various philosophical umbrellas but all favoring structuring the environment to help people with autism learn rather than fitting people with autism into a hostile world. The top three specific approaches favored by professionals (alone or modified/integrated with other approaches) were TEACCH, ABA, and pharmaceuticals.

The top three specific approaches favored by parents were pharmaceuticals, psicomotricità and (tied for third) Horse Therapy or Music Therapy. Youth talked less about specific approaches and more about specific therapists who helped them.

In general, my research has shown that the on-the-ground conceptualization of autism in Italy is as a condition with characteristics consistent with the DSM-IV-TR and

DSM-5, emerging from largely unknown biological causes, leading a person with autism to have a qualitatively different way of being, functioning, or perceiving that merits interventions which seek to structure the environment and facilitate learning and adaptation for people with autism.

Research question (2) asks, “How do people defined as autistici and their families define, manage, and experience that label?” Through participant-observation with youth 381

with autism participating in autism-specific services and interviews with these youth and their families, this dissertation generates several findings regarding autism experienes. As discussed above, people with autism and their parents defined autism in a wider variety of ways, still often related to the characteristics of the DSM-IV-TR. Notably, people with autism and their parents did not always find the diagnosis of autism meaningful, and many contested the diagnosis in various ways as described in Chapters 5 and 6. Some parents argued for other diagnoses on or not on the autism spectrum. Some also contested the association between autism and intellectual disability. Parents also talked about “pure autism” as a particular archetype and compared and contrasted their children’s autism with this idea. People on the spectrum – particularly youth with lower levels of support needs participating in Social/Recreational Activity Groups – sometimes challenged the validity of the diagnosis at all, particularly Asperger’s Syndrome. Some highlighted the ways it is socially constructed, and many explained the way they saw themselves as

“normal” despite a neuropsychiatric label.

Indeed, people with autism and their parents often described autism using normalizing language of various sorts. Parents normalized participation in autism-specific services, such as the parent who said his daughter’s move to a Residential Center was “as though she were married” because she left home at the same age he would have expected with marriage. Youth used very explicitly normalizing language, explaining how they saw themselves as normal. Parents who discussed autism with their children often talked about a balance of strengths and weaknesses, as discussed above. Youth sometimes drew on this narrative as well. Youth discussed autism primarily in terms of the social consequences of the diagnosis including this balance and their social fears. As one youth 382

explained, “I was afraid of not being understood.” Other expressed fears of and experiences with bullying and mistreatment. The fears these youth had related not to the characteristics of autism itself (such as clumsiness, difficulty with social interaction, etc.) but the social consequences of not being accepted due to their characteristics.

This study also explored the relationships people with autism and their families had with professionals. While relationships with peers could be important for many youth, relationships with staff were perhaps the most important. Both parents and youth talked about specific professionals with whom the youth with autism had strong, often ongoing relationships. Both lamented relationships that had ended as staff left the job.

During participant-observation, I keenly felt the absence of certain popular staff members, as youth spoke of them frequently. In terms of parents’ relationships with professionals, this study shows the many ways that parents searched for competent experts to care for their children, but did not necessarily become experts themselves.

In general, my research has shown that people with autism and their families define, manage, and experience autism in a range of ways, often contesting the diagnosis, but also drawing on many discourses that render their difference normal and understandable.

Chapter 7 focused on the biopolitical subjectivity of people with autism and their parents. It answered research question (3), “How does new biopolitical theory apply, or not, to social organization around autism in Italy?” It finds that biopolitical theory applies in some ways, but in other ways it does not. Many biopolitical themes were present in participant narratives, most prominently those related to somatic expertise. Explicitly biological themes of new biopolitical theory were found most lacking. Althought parents 383

and youth exercised many aspects of new biopolitical theory as I have operationalized it – such as patient literacy, social group formation, autism pride, and activism – they do not talk about their experiences within an explicitly biological framework. My results therefore call into question the “bio” of new biopolitical theory. Another area in whih my research challenges and expands new biopolitical theory is in the domain of patient- professional interaction. Parents and youth mobilized their personal experiential expertise primarily in the absence of pastoral keepers. Rather than parents and youth working alongside pastoral keepers to cultivate their own expertise and become collaborators in their care, my research shows that many parents and patients used their own expertise only when they could not rely on professional experts. Often, they did not use their own expertise when they could turn to the guidance of professional experts instead. My work also generates hypothesis for future research by exploring variability between participants with respect to their use of new biopolitical discourses. Factors that may impact the influence of new biopolitical theory are child sex and type of site the child attended.

These results point to the need for more research into gendered experiences along the autism spectrum; and to the role of smaller institutions such as services in promoting or mitigating the influence of new biopolitical themes on participant narratives. These results highlight the importance of macrostructural factors in impacting individual subjectivity, a central concern to psychological anthropology and anthropology more broadly.

In general, my research has shown that some aspects of new biopolitical theory apply in the Italian context, while others do not, based on locally particular features of

Italian biomedicine and health and human services. 384

Contributions to the Literature

In this section, I tie the findings of this study back to the key bodies of literature discussed in Chapter 1. Chapter 1 reviewed the anthropology of biomedicine, the anthropology of autism, new biopolitical theory, and the anthropology of youth. It explained how the research questions emerge from these bodies of literature. I now explain how this study has contributed to these bodies of literature.

This study contributes to the anthropology of biomedicine and of Europe and the

Mediterranean by continuing the anthropological project of de-homogenizing

“biomedicine” and “Western medicine,” elucidating several locally particular features of the Italian context. It provides an in depth description of the Italian healthcare and social services system as it relates to autism spectrum conditions and disability management more broadly. Looking at the Italian healthcare and social services system through the lens of autism highlights several important factors important to participants experiences including the division between child neuropsyciatry and adult psychiatry (and their respective histories), the history of deinstitionalization and subsequent policies of social and educational intergration, and the organization of social services outside of schooling

– particularly the Day Centers, Residential Centers, and Social/Recreational Groups described herein.

My research also contributes to the anthropology of autism through both critical autism studies and the cross-cultural study of autism. It provides an ethnographic description of autism experiences in this Italian context. This experience-near representation furthers critical autism studies by presuming the competence and value of the perspectives of people with autism and seeking participant-observation insights that 385

also include the experiences of youth with autism with high levels of support needs. This study used several methods to access the experiences of youth with autism across the spectrum, and reflections on the relative utility of these methods will be useful for encouraging future researchers to include these experiences as well. This study also contributes to the cross-cultural study of autisms worldwide and the globalization of academic conversation about autism, through the specific case of Italy. It includes the perspectives of professionals, parents of youth with autism, and youth with autism themselves in the Italian context – allowing for implicit comparison with research findings in other parts of the globe. Because this study does not presume a definition of autism, it allows for a rich exploration into the many meanings of the autism concept in this local context.

This study challenges and expands new biopolitical theory through a combination of foci drawing form the previous two liteartures. It refines and operationalizes definitions about these theories and exploring the limits of their applicability in the key case of autism in a Western context distinct from Austria and the United States where autism was first described. Literature on new biopolitical theory has often found social organization around autism to be an exemplary case, both for people with autism and their parents. Much of this research has taken place in the U.S., U.K., and Canada. This dissertation has explored this case in detail in a different Western biomedical context –

Italy. It begins by operationalizing new biopolitical theory into four main themes as identified in a close reading of the literature. It then investigates the applicability of these themes in the Italian context, creating a nuanced description and rising to the call of previous scholars to increase locally and historically particular understandings. 386

Furthermore, my research suggests that new biopolitical theory may be shaped in reaction not to new biomedical technologies alone, but to the healthcare and social services network in which they are embedded.

Finally, this study contributes to the anthropology of youth through its focus on adolescents and young adults aged 14-34 participating in autism-specific services. It explicates the life cycle perspectives on professionals and parents, and explores their efforts to create opportunities for adult roles for young people at this transitional age.

Professionals and parents worked on creating an age appropriate distancing between parents and children, and parents searched for “a little peace” for themselves and their children in adulthood. I argue that a rights-based approach to the life cycle of people with autism can challenge and improve the anthropological definition of adolescence and its conclusion of “full adult roles” by defining adulthood as an amalgamation of materials and roles to which all individuals have a right based on the standard of their peers.

Future Research

The strong ethnographic foundation of this study raises several avenues for future research. Focused studies should explore in more detail several questions raised in this dissertation. Future research on autism diagnostic practices and understanding should compare diagnoses reported in different ways for the same individual: by a physician, by the local health board, by service coordinators, by parents, and by the individual himself or herself. Such a study would have implications for understanding the saliency and desirability of an autism diagnosis for different groups. Additionally, future research should address demographic factors affecting the relevance of new biopolitical theory for different groups, with specific attention to women and girls with autism. This study is 387

largely unable to comment on differences in experiences in autism-specific contexts when compared to mixed disability contexts and fully inclusive contexts. Future research should include participants in these other contexts to determine if mixed-disability or fully inclusive settings impact the relevance of new biopolitical theory.

Broader Impacts

This conclusion has focused primarily on the contribution of this dissertation to the field of anthropology, but I would like to end by outlining my hopes for its broader impacts. The participants for this research including professionals, parents, and youth with autism. I hope that this work is of interest and of use to each of these groups.

For professionals, I hope that the findings of this dissertation can help foster international communication and collaboration by providing an English-language description of Italian work. I furthermore hope that it can help foster professional-parent collaboration in Italy and elsewhere by sharing parent perspectives, and by suggesting potential ways to identify who may find biopolitical modes of engagement and citizenship useful and therefore prefer to work as a co-expert alongside professionals, and who may be seeking to use professional expertise without becoming a co-expert.

For parents both in Italy and elsewhere, I hope that the narratives of parents in this dissertation resonates with their experiences. I hope that parents may find it interesting to read about others’ experiences even halfway around the globe, and I hope I have drawn sufficient attention to the issues that are important to them in order to share those priorities with readers of all types.

For youth with autism, I hope that this dissertation has in some small way helped them have a greater voice. I hope that youth feel represented in this work. It was very 388

important to me to conduct research focused on the lived experiences of people with autism, and not writing about people with autism without including people with autism. I hope I have done this task justice.

This dissertation has provided a rich ethnographic exploration of the social world of autism in Italy. It therefore creates a strong foundation for future cross-cultural research in the anthropology of autism. A self-conscious cross-cultural study of autism that approaches the subject from a meaning-centered perspective will be of interest to anthropologists, practitioners, advocates, and people affected by autism through their own diagnosis or the diagnosis of a loved one, with implications for research, clinical practice, and advocacy. 389

Appendix 1 – Interview Guide Topics

Staff and Professionals

1) Vorrei cominciare con qualche domande demografiche e professionali. a. Età: b. Sesso: c. Qual è la Sua religione? d. Dove è nato? e. Qual’è la Sua professione? f. Dove ha studiato? g. Cosa ha studiato? 2) Questo studio è focalizzato sull’autismo. Quindi vorrei sentire come definirebbe l'autismo (sindrome di Asperger/DPS) nelle parole Sue? a. Quali sono le caratteristiche? b. Cos’è la differenza tra autismo è Asperger? (Cos’è la relazione tra Asperger è lo spettro autistico?) c. Cosa è il processo per una diagnosi? i. Da chi? ii. Quale esame o test? iii. Una persona con una diagnosi, cosa riceve in seguito in termine di diritti, servizi, aiuta, ecc? 3) Ora che abbiamo discusso cos’è l’autismo, potrebbe dirmi un po’ riguardante il suo lavoro? Che cosa fa? a. Coma va una settimana tipica? 4) Personalmente, come ha cominciato a lavorare con autismo/DPS? 5) Prima di questo lavoro, Lei ha conosciuto qualcuno con autismo? 6) Questa organizzazione/servizio a. la storia di questo organizzazione: i. Mi può raccontare la storia della organizazzione? ii. Quando è stato fondato? Da chi? Come mai? b. Che cosa fa questa organizzazione? Come mai? i. Qual’è la filosofia di intervento qui? ii. Quali sono gli approcci usati? 1. Quali sono i vantaggi del questo approccio? 2. Ci sono alcuni svantaggi? c. Lavora con famiglie che usano altri approcci? Quali sono questi approcci? i. È utile, o sbagliato? 7) gli obiettivi dall’organizzazione per gli utenti con DPS a. Quali sono gli obiettivi di questa organizzazione? i. Per gli utenti con autismo? ii. Per i loro genitori e le loro famiglie? iii. Per italia, in senso della politica, la rapporto con la communità, e la quadra ampia? b. Hanno cambiato dall’inizio? 390

8) Com’è questa organizzazione coinvolta con altri servizi per persone con DPS/autismo/Asperger? a. So che il sistema scolastico è molto importante per persone con DPS che usano servizi di insegnanti di sostegno, ecc. Com’è questa organizzazione coinvolta con servizi scolastici per persone con DPS/autismo/Asperger? b. Quali sono i suoi pensieri/reflessioni riguardante servizi scolastici per gli studenti con DPS/autismo/Asperger. i. Ci sono problemi? Descrivergli. ii. Quali tipi di servizi vorrebbe avere alla scuole? 9) Abbiamo quasi finito, ma vorrei chiederle anche sulle cause di autismo. So che ci sono molte teorie – genetiche, neurologiche, ambientali. Secondo Lei, cosa è la causa più probabile? a. Ci sono cause organiche? b. Cause sociali o nella famiglia? c. Cause ambientali? 10) È possibile guarirlo? 11) Che tipo di ricerca dovremmo sostenere? 12) Che altro devo conoscere su questa organizzazione? Sul Suo lavoro? Sull'autismo?

391

Parents

1) Vorrei cominciare con qualche domande demografiche e professionali. a. Età: b. Sesso: c. Qual’è la Sua religione? d. Dove è nato/a? e. Dove abita? f. Qual’è la Sua professione? g. Potrei chiederle qual’è il Suo reddito familiare per anno? i. €0 - €15.000 ii. €15.000 - €28.000 iii. €28.000 - €55.000 iv. €55.000 - €75.000 v. Più di €75.000 h. Dove ha studiato? i. Cosa ha studiato? j. Quanti figli/e ha? i. Le età degli figli/e: ii. Chi ha una diagnosi? Solo ___? iii. Qual’è la diagnosi? iv. Ha avuto diagnosi precedente? v. Ha attualmente diagnosi aggiuntivi? vi. Ha un altro termine o espressione per descrivere i problemi di Suo/a figlio/a? 2) Ora, vorrei chiederle sulle Sue esperienza prima della diagnosi. a. Potrei chiederle della gravidanza? [se sì]: Ci sono stati alcuni problemi o malattie durante la gravidanza? Può descriverceli. i. Dove ha partorito? (In ospedale? A casa?) ii. Come ha partorito (naturale, parto cesareo, parto nell’acqua, parto pretermine, ecc.)? b. Ora vorrei chiederle di Suo/a figlio/a nell’infanzia: ha avuto problemi e/o malattie? c. Quando Suo/a figlio/a ha avuto problemi di salute o difficoltà per la prima volta? Quanti anni aveva Suo figlio/a? i. Che cosa è sucesso? ii. Chi ne ha notato? (Amici? Parenti?) iii. Che cosa hanno detto? iv. Che cosa le hanno suggerito? d. Come ha deciso di chiedere aiuto per il Suo/a figlio/a? i. Quanti anni aveva Suo/a figlio/a questa volta? ii. Da chi (che tipo di professionista)? iii. Perché questo tipo di aiuta? 3) Ora vorrei farle delle domande specifiche sulla diagnosi a. Quando ha realizzato che questi problemi potrebbero essere un disturbo pervasive dello sviluppo (DPS)? 392

b. Chi ha fatto la diagnosi? i. Uno professionale o molti? ii. Che esami ed indagini hanno effetuato? iii. Che cosa le hanno detto su [questa diagnosi]? iv. Quali trattimenti le hanno suggerito? c. Quali sono le implicazioni della diagnosi? Che cosa succede in seguito: servizi, aiuti, sostegni, ecc. d. E’ in disaccordo con qualcuno? e. Che cosa pensava su queste diagnosi quando ha sentito per la prima volta? f. Che cosa pensa ora? 4) Ha detto che la diagnosi del Suo/a figlio/a è [diagnosi]. Che cosa signica per lei? a. Che problemi vi ha causato? b. Che cosa le fa più paura a dei [questa diagnosi]? c. Quali sono i problemi o le preoccupazioni attuali? d. Quali sono le vostre aspettative per il futuro? e. Quali sono le vostre speranze? f. Quali sono state le reazioni dalla Sua famiglia alla diagnosi di Suo/a figlio/a (parenti, fratelli, marito/moglie) 5) Le ringrazio molto per raccontami la Sua storia. Ora vorrei farle qualche domande sull’autismo in particolare. a. Con parole Sue, cosa è l’autismo [o la diagnosi particolare dal Suo/a figlio/a]. b. Quali sono le caratteristiche/quali sono i tratti di suo figlio che vede come autismo? c. Che cosa l'ha causata (per suo figlio)? d. Come ha causato? Come funziona la causa, cioè, qual’è il meccanismo? e. Ci sono alcuni altre cause? f. Perché è successo quando è successo? (collegata con l’età, eventi specifici?) g. come descrive i problemi dal Suo figlio ai amici o colleghi? h. Come descrive i problemi dal Suo figlio ai sconosciuti? i. Come descrivi i problemi dal Suo figlio a Suo figlio, se parlate tra di voi? j. Una persona nella vosta famiglia ha mai avuto problemi simili? In che senso? k. Conosce qualcuno, come un amico o collega, che ha mai avuto problemi simili? In che senso? l. Lei ha sentito parlare di una persona con questi problemi nei media? In che senso? 6) Gradirei parlare un po’ di più sul Suo figlio oggi. a. Quali sono le cose che gradisce meno? b. Quali sono i suoi interessi particolari? c. Quali sono le sue abitudini o comportamenti abituali? d. Come va Suo/a figlio/a con le attivita` di vita quotidiana (andare al bagno, fare la doccia, cucinare, mangiare, vestirsi)? e. Come va la sua communicazione? 393

7) La ringrazio di questi racconti della vostra vita. Ora vorrei sentire le sue reflessioni sui trattamenti e gli interventi. a. Quali interventi ci sono stati nella scuola (insegnanti di sostegno, servizi e attivita`)? Come andava? i. Quando è partito da scuola? b. Quali tipi di terapia o intervento avete provato, e per quale difficoltà? i. Programmi di terapia (musicaterapia, psicomotricità, ecc)? ii. Usate alimenti particolari? iii. Usate medicina/farmaci? Cosa tipo? c. Ci sono altri trattimenti o interventi utilizzati? d. Come va ogni intervento? e. Quali sono i risultati più importanti che spera di ricevere da ogni trattamento? f. Per questi trattamenti, cosa si aspettava di ricevere che non ha ricevuto? Tipo di therapia Per quale Risultati aspettati Qualcosa si aspettava difficoltà che non ha ricevuto

8) La ringrazio molto, le sue reflessioni sono molto importanti. Abbiamo quasi finito. Ora, gradirei conoscere la vostra esperienza con questa organizzazione. a. Come è venuta/o conoscenza del servizio? b. Come ha cominciato ad usufruirne? Come è stata la prima visita? c. Perché ha scelto qui per Suo figlio? d. Ha visto altri opzioni che non ha scelto? [Se sì] Come ha deciso tra qui e lì? e. Quali sono i vostri obiettivi della frequentazione? Quali sono i risultati più importanti che spera di ricevere dalla frequenza? f. Come va la frequentazione per suo figlio? Cosa dice o esprime su di qui? g. C’è cosa si aspettava di ricevere che non ha ricevuto? h. Suo figlio frequenta altri organizzazioni o servizi? Quali? 394

i. Cosa fa di là? ii. Come è venuta la conoscenza? iii. Quali sono i vostri obiettivi in quelle situazioni? Quali sono i risultati più importanti che spera di ricevere dalla frequenza? iv. C’è cosa si aspettava di ricevere che non ha ricevuto? i. Frequenta Lei come genitore altri organizzazioni o servizi? Quali? i. Cosa fa di là? ii. Come è venuta la conoscenza? iii. Quali sono i vostri obiettivi in quelle situazioni? Quali sono i risultati più importanti che spera di ricevere dalla frequenza? iv. C’è cosa si aspettava di ricevere che non ha ricevuto? 9) C’è qualcos'altro che dovrei sapere, qualsiasi altra cosa che è importante per Lei?

395

Youth with Autism – Individual Interview

1) Prima, vorrei chiederti alcune domande su di te. a) Quanti anni hai? b) Sei maschio o femmina? c) Qual’è la tua religione? d) Dove è nato? e) Dove abiti? f) Cosa fai per lavoro? g) Potrei chiederti qual’è il tuo reddito familiare per anno? i. €0 - €15.000 ii. €15.000 - €28.000 iii. €28.000 - €55.000 iv. €55.000 - €75.000 v. Più di €75.000 h) Dove hai studiato? Dove stai studiando? i) Cosa hai studiato? Cosa stai studiando? 2) Come abbiamo detto, sto conducendo uno studio sulla esperienza di persone con diagnosi (o auto-diagnosi) sullo spettro autistico. Hai una diagnosi? [se no, o no ho capito, chiedi: sai cos’è l’autismo?] a) cos’e`? b) cosa voul dire (secondo te)? i. Che problemi [questa diagnosi] ti ha causato? ii. Che cosa ti fa più paura di [la diagnosi]? iii. Hai qualche diretto o accesso a servizi a causa della diagnosi? Quali sono? iv. Quali sono i comportamenti o carrateristiche che ti attribuisci a causa della diagnosi? v. Che cosa significa per la tua famiglia, per la tua scuola, per il tuo lavoro, ecc? vi. Usi un altro termine per descrivere la tua difficoltà/diversità? 3) Grazie mille, sono molto interessata. Continuiamo? Vorrei sentire come funziona [la tua diagnosi]. a) con parole tue: i. Cos’è l’autismo? ii. Quali sono le caratteristiche? iii. Come funziona [la tua diagnosi]? iv. Che cosa l’ha causata? 1. C’è qualcosa che è sucesso all’interno del tuo corpo? Cosa? 2. C’è qualcosa che è accaduto nella tua famiglia, al lavoro, o nella tua vita sociale? 3. Per te, la diagnosi è correlata ad eventi specifici accaduti nella tua vita? In che senso? b) Come descrivi la tua diagnosi ai altri? i. Ai compagni? ii. Ai sconosciuti? 396

iii. Ai cari? c) C’è qualcuno nella tua famiglia con le difficoltà/caratteristiche simili? In che senso? Come è questa persona, simile a te? Diversa rispetto a te? d) Hai amici o compagni con le difficoltà/caratteristiche simili? In che senso? Come è questa persona? simile a te? Diversa rispetto a te? e) Conosci qualcuno in TV, in film, o in libro con le difficoltà/caratteristiche simili? In che senso? Come è questa persona? simile a te? Diversa rispetto a te? 4) Grazie per questi racconti. Dimmi, ti ricordi quando sei stato diagnosticato? [If no] Hai sentito dettagli dai genitori o qualcuno altro? [If no, skip to section 5]. a) Quali sono i signali precoci di questa diagnosi – chi lo ha notato? (Tu? Genitori? Altri parenti? Insegnanti? Amici?) b) Che cosa ti hanno detto? c) Che cosa hanno suggerito? d) Quanti anni aveva a questo punto? e) Cosa è successo dopo? f) Come hai ricevuto la diagnosi – da chi? i. Che cosa è successo alla visita con [professionista]? Che cosa è sucesso dopo? g) Hai avuto altre diagnosi precedenti? Aggiuntivi? 5) Grazie di nuovo, hai fatto benissimo. Ora, vorrei parlare sui professionisti che hai incontrato per [la tua diagnosi]. a) Come è andata la scoula? Con chi hai lavorato? Hai avuto insegnanti di sostegno? Hai avuto educatori? b) Hai vistato una psicologa? Cosa avete fatto insieme? c) Hai vistato una neuropsichiatra? Cosa avete fatto insieme? d) Hai vistato un altra terapista? Chi? Cosa avete fatto insieme? e) Cosa mangi? Cosa non mangi? Perché? f) Prendi medicina? Cosa? Perché? g) Fai qualcosa altro che devo conoscere? 6) Abbiamo quasi finito! Vorrei sentire sulla tua esperienza qui, a [nome della organizzazione] a) come hai fatto a saperlo? Chi ti ha detto sulla organizzazione? b) Hai deciso di frequentare, o è stato la decisione di un altra persona? Chi? c) Come è andata la prima visita? Cosa è successo? d) Cosa fai qui? Cosa hai fatto oggi? e) Hai detto che fai [elenco delle attività]. i. Qual’è la tua preferita?

ii. Preferisci [attività A o attività B]? iii. Quali attività non ti piacciono molto? iv. Perché fai [attività] f) Perché vieni qui? g) Quali sono i tuoi obbiettivi per la frequenza qui? h) Cosa vuoi [questa organizzazione] fare? i. Ti lo fanno fare? 397

i) C’è qualcosa che non va? j) Che cosa dovrebbe cambiare? 7) Hai frequentato altre organizzazioni? a) come hai fatto a saperlo? Da chi? b) Come è andata la prima visita di là? c) Cosa fai di là? Cosa hai fatto di là? d) Hai detto che fai [elenco delle attività]. i. Qual’è la preferita? ii. Preferisci [attività A o attività B]? iii. Quali attività non ti piacciono molto? iv. Perché fai [attività] e) Perché vieni qui? f) Quali sono i tuoi obbiettivi per la frequenza qui? g) Cosa vuoi [quella organizzazione] fare? i. Quella organizazione fa così? h) Come è [quella organizzazione] simile a [questa]? i) Come è diversa?

398

Youth with Autism – Group Interview

1) Your motivations for participating a) Is this organization for people with Asperger’s/autism/ASD? b) What is Asperger’s/autism/ASD? c) What does it mean to you? i. Does it cause you problems? Describe them. ii. What do you fear most about it? iii. What are the implications of a diagnosis? Does it give you something: services, help, opportunities? iv. Do you have another term to describe it? v. What behaviors to attribute to it? d) How does Asperger’s/autism/ASD work? i. How does it affect you? 1. What are the causes? 2. When did it start? Why did it start at this time? 3. What happens in the body to cause it? 4. Is there something that happened in your family that caused it? At school or work? In your social life? In what way did this cause it? 5. Is it related to specific events in your life? What events? How are they linked? e) How do you describe Asperger’s/autism/ASD to other people? i. Classmates or co-workers ii. Strangers iii. Loved ones iv. Does someone in your family have similar problems (or another word pulled from the response, as appropriate)? How are they the same or different from yours? v. Does a friend or coworker have similar problems? How are they the same or different from yours? vi. Have you heard about someone in the media who has these problems? How are your problems the same or different from someone you’ve heard about? f) How did you learn about this organization? g) Did you decide to come here, or another person decided? Who? h) For what reasons do you come here? 2) This organization a) What are the usual activities here? b) What else have you done? c) What are your favorite activities? d) What activities do you not like very much? 3) Goals a) What are the goals [of these activities]? b) What do you want this organization to do? What are your goals for participating? 399

c) Does it do these things? 4) Changes a) Do you have any problems with this organization? Describe them. b) What would you change? 5) Are there other topics you want to discuss?

400

Appendix 2 – Codebooks

Table 16: Emergent Codebook Code Subcode Definition Definition 1. What is Autism? Contesting the DX Statements regarding the definition of Of an autism spectrum disorder, not autism, characteristics of a person with epilepsy, intellectual disability, or autism, and ways of identifying others. (diagnosing) autism. Includes “Autismo Puro” comparisons and contrasts with other References to “pure,” “true,” or disabilities. Includes tests used to “classic” autism diagnosis it. Wing-Gould Triad References to the class “triad of impairments” used in the DSM-IV Specific Characteristics Referenced 2. What Causes Autism Specific Causes Referenced Statements regarding the definition of autism

3. Treatment and Management Specific Treatment or Intervention Statements regarding different ways of Referenced treating, managing, and intervening with School autism. Includes specific intervention Discussions of schooling experience, programs, descriptions of specific teachers, administrators, diplomas, programs, descriptions of rights and etc. services, descriptions of professions and practitioners. 4. Life Cycle Comments on aging, life stages, age- or stage- related milestones. Comparisons and contrasts between different age groups. Statements on the nature of bambini, ragazzini, ragazzi, adolescenit, adulti, anziani, ecc. Comments related to changes in availability or execution of services due to child’s age or level of schooling. 5. Vergogna Instances of this word using the stem vergogn* 401

6. Non Accetta la Diagnosi Any reference to someone non “accettare” someone else’s autism. Must use the word “accettare.” The direct object could be the diagnosi, autismo, che il figlio ha un problema, or anything of that nature. 7. Criticism Whenever someone makes a negative Professional on Professional comment about someone else. Coded Professionals criticizing other separately 1. For cross-referencing 2. So professionals, organizations, I can be aware of the most sensitive approaches to autism, or the state. information. This code may be abolished Professional on Parent if it is found unuseful. However, I Professionals criticizing parents, anticipate it being useful in the final including the part afterwards where chapters to not only compare and they say they understand. Includes contrast respondent groups, but put them descriptions of families “non in conversation with each other accettare” Professional on Client Professionals truly criticizing clients. Not just describing difficulties the clients have but legitimately complaining about something the client does that bothers them personally. Parent on Professional Parent on Parent Parent on Client Client on Professional Client on Parent Client on Client 8. Complements The inverse of Criticism. Professional on Professional Limited to genuine compliments, not just positive evaluations of methods. Things like sono in grado, capace, in gamba, gentilissime, ecc. Also talking about how education integration is the best law in the world. Professional on Parent Includes 1. Genuine compliments about parents being capace, ecc., 2. Sympathetic statements about parents working very hard, trying hard, having a lot to deal with. 402

Professional on Client Clients are bravi, gentili, solari, what I learned from them. Parent on Professional Parent on Parent Parent on Client Client on Professional Client on Parent Client on Client 9. Gender and Sexuality Statements about the relationship between gender and autism, the gendered experience of autism, gender differences, or sexuality 10. Youth Relationships Youth-Youth Statements about the affective or Youth-Staff friendship relationships of youth with autism. Excluding siblings for now because it isn’t relevant. 11. Services Heard about Particular section dealing with responses From whom? How? to the questions about services. Goals for Participation Parents’ or youths’ stated goals or motivations for having their child participate in this service 12. Child’s Experience Statements parents made about their child’s experiences to be used in Chapter 6. Includes statements about things child says or expresses. Includes direct and indirect dialogue. Does not include observation of actions unless they are linked to saying or expressing something. 13. Serenità/Tranquillità Instances of these words using the stems seren* and tranquil* 14. Asperger Instances of this word, including also “Aspie”

403

Table 17: a priori Codebook Code: Definition Subcode: Definition Molecularization: “First, molecularization: The “style of thought” Geneticization: Focus on the genetics of of contemporary biomedicine envisages a disease. “Today’s emphasis on genetic life at the molecular level, as a set of causes and genetic understanding seems to intelligible vital mechanisms among be part of a more expansive process I have molecular entities that can be identified, called ‘geneticization’ (and have begun to isolated, manipulated, mobilized, describe elsewhere). Those in charge of recombined, in new practices of health-related naming and helping intervention, which are no longer activities increasingly now reduce constrained by the apparent normativity of differences between individuals to their a natural vital order” (Rose 2007: 5-6). DNA codes, define most disorders and behaviors, as well as physiological variations, as at least in part genetic in origin, advocate the adoption of interventions that employ genetic technologies to manage problems of health and, in general, (incorrectly) equate human biology (humanity?) with human genetics, implying that the latter acts along to make each of us the organism she or he is.” (Lippman 1991:85). “Packaging human health problems – as well as a whole range of human variability – as ‘genetic’ blurs the distinctions between disease and illness, disability and handicap.” (Lippman 1991:87) Neurochemical/Neurostructural Selves: Focus on neurological molecular components (neurons, neurochemicals) of a disease Microbiologization: “Biopolitics, then, is joined by microbiopolitics: the creation of categories of microscopic biological agents; the anthropocentric evaluation of such agents; and the elaboration of appropriate human behaviors vis-`a-vis microorganisms engaged in infection, inoculation, and digestion” (Paxson 2008) Somatic Expertise: “These developments are giving rise to Somatic Individuality: “beings whose new ways of governing human conduct, individuality is, in part at least, grounded and the rise of multiple subprofessions within . . . [their] fleshy, corporeal that claim expertise and exercise their existence, and who experience, articulate diverse powers in the management and judge, and act upon . . . [themselves] 404

of particular aspects of our somatic in part in the language of biomedicine” existence—geneticists specializing in (Rose 2007:26) particular classes of disorder working in Patient Literacy: A form of “lay alliance with groups of patients expertise” in which patients or parents and families, specialists in reproductive read up on autism after receiving the medicine with their public or private diagnosis. clinics and devoted clientele, stem cell Experiential Expertise: A form of “lay therapists whose work becomes known expertise” (term credited to Gibbon and across the world via the Internet and who Novas 2008:8 as it relates to biosociality, become the focus of pilgrimages of hope also). “We argue that this range of for cures for everything from spinal cord understanding constitutes lay expertise injuries to Alzheimer’s disease. Around about the new genetics. People are all these experts of the soma cluster a whole experts about their own lives. And as variety of new pastoral experts—genetic social actors we engage with a range of counselors are perhaps the best other actors and institutions and therefore exemplars—whose role is to advise and develop a unique set of knowledge from guide, to care and support, individuals and which to judge new experiences. families as they negotiate their way Expertise is therefore not solely the through the personal, medical, and ethical province of professionals, but lay people dilemmas that they face” and also the field have valuable knowledge and of bioethics (Rose 2007:6) understanding of the social world which equips them to discuss the new genetics in a sophisticated and reflexive manner.” (Kerr et al 1998) “If the [Disabled People’s Movement] valorizes the experiential knowledge of disabled people, biosocial associations are more likely to embrace a more complex epistemological position that has been described as a ‘coalition or hybridisation of experiential knowledge, lay expertise and counter-expertise’ (Hess 2004, 697)” (Hughes 2009) “Experiential knowledge is truth learned from personal experience with a phoenomen [….] Besides experiential knowledge, there is experiential expertise […] which refers to competence or skill in handling or resolving a problem through the use of one’s own experience [….] Thus experiential expertise can serve as a basis for leadership, a higher status in the group, and a source of authority for decision making.” (Borkman 1976) Responsibilization: “patients are increasingly urged to become active and 405

responsible consumers of medical services and products (Rose 2007:4)” Situations in which patients are actively responsible for their own care either via consumer decisions (shopping for a doctor/service) or technologies of the self (structuring their own home, creating agendas, becoming paraprofessionals, working on at home treatments such as Doman Delacato). Patients have the onus of responsibility and decision-making. Pastoral Keepers: See quote to the left. Also, “Such groups will have medical specialists, laboratories, narratives, traditions, and a heavy panoply of pastoral keepers to help them experience, share, intervene, and “understand” their fate” (Rabinow 1999:413) Pilgrimages of Hope: See quote to the left. Individual Identities Social Model of Disability: Autism is a mismatch between person and environment, not an inherent impairment Autism as a Way of Being (Difference not Deficit): Autism is not an appendage. Rejection of the disease model. Can be positively or negatively valued, point is that it is something someone is, not has. Language that describes autism as a “diversity” Autism as identity: Mostly limited to people with ASD. Discourses in which “I am an Autie/Aspie” or “I do X because I have autism.” Parents/professionals may say “I don’t do X because I don’t have autism” The Family with Autism: The moral career of a parent of a child with autism. Identification as an autism parent in some way. Identification with a (physical or imagined) group of autism parents. I, like all parents... or I, like these other parents… Distinct from biosocial group formation, but clearly linked. 406

Autism Pride: In which autism is described as something that brings positive characteristics such as honesty, computer skills, etc. Ways in which autism is different, not deficit. Autism as normal – We Are All The Same: Ways in which we are all autistic, or ways in which autistic behaviors parallel “normotipico” behaviors Cerebral Subjectivation: “people define themselves as autistics (rather than as having autism) because their brains are ‘wired’ in an atypical way [….] The neuroscientistic [sic] language, often imprecise, serves to construe autism as a positive attribute, and to stress the natural difference from non-autistic (often called neurotypcal) experience and identity” (Ortega 2009:427) Collective Identities and Biosocialities Social Group Formation: Social organization around disability/illness identities Activism/Identity Politics: Term taken from Sahra and Gibbon 2008:8. Lobbying for the disease (both in terms of directing research and in receiving state resources). Also fundraising and creating own services (grassroots). Informational Biocitizenship: “The forms of citizenship entailed here often involve quite specialized scientific and medical knowledge of one's condition” (Rose 2007:135). I use it to mean the role of collectivities and parent networking in sharing information and the mobilization of information as part of a group. Rights Biocitizenship: ““campaigning for better treatment, ending stigma, getting access to services, and the like” Digital Biocitizenship: participation in electronic communities around the condition. Finding information, resources, and connections online.

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Appendix 3 – Italian Block Quotes

Chapter 4 p. 158

Pervasivo è qualcosa che ti cambia la vita. È un ragazzo che è incapace di avere relazioni sociali, non è generalizzato, come dire “eh beh, è un po’ mattacchione perché ogni tanto fa così, però… si fa amici in qualsiasi posto vada”, per esempio. No, se è pervasivo, ti viene a incidere, a danneggiare in qualche cosa. Quindi pervasivo è più pesante.

Parliamo spesso di disturbo pervasivo dello sviluppo, però quello è anche molto ampio, no? [...] quello che noto molto spesso è che in medicina non facilmente danno subito una diagnosi precisa, preferiscono aspettare [....] visto che abbiamo tanti bambini che magari diamo una diagnosi di autismo atipico o un disturbo pervasivo dello sviluppo non altrimenti specificato, quindi diciamo per le forme ‘borderline’ di autismo, che spesso ai genitori (danno) la falsa idea che sono bambini che possono guarire piuttosto che non sono così gravi.

Sono simili, il disturbo generalizzato dello sviluppo è l’autismo però per i genitori dire “autismo” è proprio un’etichetta che magari non c'è neanche conoscienza, quindi si immaginano loro figlio isolato, incapace, come se non... se non fosse capace di provare emozioni. Il disturbo generalizzato dello sviluppo si parla ancora dello sviluppo, quindi dà una sensazione di cambiamento, di crescita, e, e quindi la vedono quasi meno come una condanna. p. 163

Um, alcuni tra gli intellettuali che si occupano dell'asperger dicono anche che le persone asperger non hanno l'empatia, ma questo molti asperger negano, dicono semplicemente che loro modo di empatizzare è diverso da quello che chi si occupa di analizzare loro vorrebbe vedere. Quindi con loro che studiano Asperger magari non sono capaci di comprendere loro modo di empatizzare.

Una cosa interessante che scopri è che anche con la persona con autismo [è possible creare una relazione, nonostante] che prima di lavorarci insieme sai che sono persone che fanno fatica entrare in relazione. In realtà usano canali privilegati, comunque utilizzano canali diversi [rispetto a] quelli che si usano quella maggior parte delle persone, [ma nonostante questo si può arrivare a] stare in relazione anche molte significative. Non è che non possono entrare in relazione, è che usano canali diversi. p. 164

Anthropologist: Ci sono altre caratteristiche che sono importanti? 408

Respondent: Uhm… Eh, direi queste. Forse non per tutti… l’esistenza di un mondo parallelo, cioè, come se vivessero inseriti in una realtà diversa da quella che percepiamo noi.

L'autismo è una compromissione nella relazione, nella comunicazione, nell'area della immaginazione. E questa è la definizione tecnica. Se poi vogliamo vedere cos'è una persona autistica, una persona autistica è una persona che vive con le parametri diversi dai nostri. p. 166

La persona con autismo ha un ritardo mentale, mentre la persona Asperger non ha questo ritardo mentale, ma un quoziente intelletivo nella norma. Comunque, l’Asperger ha grosse difficoltà sempre nella triade, cioè nella comunicazione, nella realzione, e negli interessi che chiaramente, avendo un quoziente intellettivo nella norma, è molto più evidente, in un asperger poter verificare gli interessi ristretti e stereotipati, cosa che per una persona con autismo con un ritardo mentale grave, è più difficile magari, poter osservare. p. 168

Mi veniva più facile [la differenza] fra autismo ad alto funzionamento e Asperger. [....] La differenza in realtà tra le due malattie, cioè, le due diciture più che le due malattie, è che negli asperger il linguaggio compare da subito normale con l'età [...] mentre ad alto funzionamento può comparire anche un po' dopo, magari il linguaggio può arrivare anche intorno ai 4, 5 anni. p. 169

Alcuni pensano che l’asperger è diversa dall’autismo, [....] Di fatto per [la mia] esperienza le caratteristiche distintive sono il ritardo di linguaggio, - nel senso che se un bambino ha nella sua storia da piccolo avuto una storia di ritardo linguistico quindi – poi magari arriva a parlare e anche molto molto bene, e arriva a livelli cognitivi buoni, ma era partito da una situazione di ritardo, allora parliamo di autismo ad alto funzionamento. Se invece il bambino ha una storia di sviluppo completamente nella norma, anzi, precoce nell’acquisizione, [...] in quel caso [sarà] più sindrome di asperger. Qualcuno dice anche che nella sindrome di asperger un aspetto caratteristico è la goffagine [...] però questo non è un elemento così distinttivo nel senso anche che dei ragazzi che hanno un quadro di autismo ad alto funzionamento possono esserlo [....] Il quoziente può essere comunque alto in entrambi casi. In genere, però, il quoziente delle persone con la sindrome di Asperger prevede che il quoziente verbale, quindi le abilità verbali, siano più alte del quoziente si dice di “performance.” Mentre nei soggetti con autismo ad alto funzionamento è contrario.

409

La difficoltà per le persone che hanno fondato proprio associazioni sull’Asperger, [è] la paura che si possa, poi, in un unico calderone, perdere l’aspetto distintivo dell’alto funzionamento e dell’Asperger.

Capisco che adesso si è deciso di eliminar[e la sindrome di Asperger] dal nuovo manuale diagnostico, anche se è un dolore enorme per le persone che hanno una diagnosi e che si riconoscono come “Aspie.” E quindi, questo dal punto di vista etico io trovo veramente una difficoltà notevole. p. 175

Nonostante le linee guida [...] loro ti dicono “Non è giusto, perché non è sufficiente, perché le persone con l’autismo hanno una dimensione emotiva, una dimensione simbolica”, dico: “ok, anch’io ci lavoro – anche il cognitivo- comportamentale non significa che non lavori sulle emozioni, altro! Però loro te lo mettono solo in termini di comportamento di… - poi tutto quello che leggevo anche ieri era: non tutto può essere validato scientificamente, perché le persone hanno delle dimensioni individuali, ma certo! Le conosciamo anche noi! Però ancora c’è davvero questa diatriba e molti – si riacc[endendo], non è assopita per niente, si sta riaccendendo, secondo me, e riacutizzando. p. 176

Ogni tipo di intervento ha il loro pro e il loro contro, tante che noi usiamo aspetti del comportamentismo classico, aspetti di DIR, aspetti delle tradizioni psicodinamiche, quindi usiamo aspetti tecniche comportamentisti che però appunto in questo contesto con continua attenzione agli aspetti della soggetività che è di derivazione dinamica. p. 178

È un approccio ovviamente di tipo relazionale, che mette in relazione il bambino prima di tutto… con - si cerca di farlo relazionare col genitore, poi con l’ambiente, con le altre persone, con l’estraneo, che sono… che è il terapista e con il mondo che lo circonda… attraverso un processo di progressiva regolazione, autoregolazione, no? E di progressiva consapevolezza di quello – di attenzione su quello che – sia sull’ambiente, ma sulla situazione, cioè, una capacità di leggere l’ambiente e la prevedibilità della situazione [partendo dagli] stimoli. Ma questo vuol dire riuscire a portare la sua attenzione su ciò che lo sta circondando… in quel momento. Quello che noi vediamo sono dei bambini che migliorano tantissimo dal punto di vista proprio delle competenze di aggancio, sguardo, di risposta al nome, di tenuta, di condivisione dell’attenzione sulle cose.

Io credo che la vostra sia più “speech therapy” e “speech” è il linguaggio parlato, e invece la logopedia si occupa di comunicazione e di linguaggio, quindi già nel nostro lavoro la comunicazione è già prevista, in ogni forma, cioè: visiva, 410

verbale, gestuale, qualsiasi. Ci occupiamo di comunicazione. p. 179

Se ti faccio un test logopedico standard, in cui ti chiedo di ripetere o di nominare delle cose e tu non hai il linguaggio, è chiaro che… uhm.. il mio test risulterà… non, non attendibile. Però logopedia vuol dire comunicazione, e la comunicazione la si può valutare, la si può insegnare anche in altri… in altre modalità. p. 180

Allora, per quella che è la mia esperienza, devo dire che per quanto riguarda l’integrazione di persone che per esempio hanno un ritardo dell’apprendimento, piuttosto che un deficit sensoriale, io ho vissuto delle buone esperienze, dove l’integrazione in effetti ha funzionato, e dove quindi in effetti ci sono anche stati appunto dei buoni risultati grazie a questo. Invece, per quanto riguarda il disturbo dello spettro autistico, devo dire che intanto, sono arrivate qua tante persone che nella scuola tra virgolette “normale” hanno vissuto anche dei momenti di frustrazione e dei momenti proprio di difficoltà, ma proprio perché la scuola non è attrezzata, non ha probabilmente ancora le conoscenze e le competenze per poter fare un discorso di integrazione all’interno della scuola. E poi ho visto – però qua, nel gruppo soltanto di ragazzi autistici – proprio perché ci sono le stesse modalità di comunicare, le stesse caratteristiche, lo stesso modo di affrontare determinate situazioni, che i ragazzi hanno vissuto in maniera comunque più serena, perché hanno trovato comunque un ambiente più adatto a loro, e dove sono nate anche delle amicizie, perché comunque si sono trovati ragazzi con lo stesso tipo di interesse [....] Perché dove invece ho visto situazioni di scuola superiore, dove viene richiesto anche maggiormente l’aspetto così dello stare in classe, dell’ascoltare la lezione, del fare la verifica, del fare l’interrogazione, dove vengono fatte appunto tutta una serie di richieste che per i nostri ragazzi sono delle richieste non alte – sono troppo alte, ma non dal punto di vista della competenza e della capacità cognitiva, ma proprio alte nel reggere l’ansia, nel reggere lo stress, è molto faticoso questo per loro. Mentre invece, una situazione più a loro misura sicuramente li ha fatti sentire più a loro agio. p. 181

Il problema è che attualmente stiamo applicando in italia I programmi terapeutici secondo me tradizionalmente vecchi, quindi psicomotricità e la logopedia che le linee guide per autismo e le ricerche internazionali hanno detto che non sono adeguati per l'autismo perché hanno bisogno di interventi psicoeducativi e strutturati, intensivi ma non ossessivi. p. 182

Cognitivo comportamentale quindi psicoeducativo quindi l’idea è concentrare 411

l’attenzione su insegnare alle persone con autismo tutte quelle abilità che sono utili per la vita quotidiana, per la loro vita, per potersi per avere una vita diciamo di successo nel senso realizzata, dignitosa, felice, e di sostenere in questo anche le famiglie e poi le persone che lavorano con loro. Io faccio molto rifiermento alla filosofia della divisione di TEACCH. p. 183

Il modo migliore per aiutare le persone con Sindrome di Asperger è aiutarle dal punto di vista educativo. Cioè, correggere alcuni loro comportamenti, aiutare ad imparare degli strumenti nuovi che loro non possiedono, per relazionarsi meglio con gli altri, per organizzare meglio la propria vita, per gestire le situazioni [....] Ci sono diverse modalità di approccio. Ma tutti quanti dovrebbero basarsi proprio sull’aiuto di tipo educativo e quindi aiutare la persona a comprendere la realtà, decodifare la realtà per lui, e dare degli strumenti migliori per interagire e capire quali sono le proprio lacune e migliorarle.

Il cognitivo-comportamentale è un attimino meno... allora, l'approccio comportamentale di una volta è un addestramento, è considerato come un addestramento. Quindi tu impari per riflesso cioè non perché hai imparato veramente, no, ma perché sei stato condizionato ad imparare. E quindi. Però in altre situazioni tu questa cosa non saresti in grado di farla, no? Invece il cognitivo-comportamentale tu lavori molto invece sul... uh... più sul fargli imparare che quello serve per fare questo questo questo e quest'altro, non soltanto una cosa. Cioè, quello che stai imparando questo non è perché io ti sto addestrando a fare questa cosa come riflesso di un comportamento che metti, no? perché c'era la cosa, vabbé, io ti do la caramella e tu mi rispondi, se io non ti do la caramella, tu non mi rispondi, no? Questa. Ma che io ti dico, uh, che devi fare, mi devi rispondere non tanto perché ti do la caramella ma perché ti serve a fare tante altre cose. p. 184

Sempre partendo dal presupposto che per me psicoeducativo vuol dire utilizzare tutte le strategie e le conoscenze che abbiamo ehm… a seconda della persona per sviluppare le sue abilità. Per cui, come ti dicevo l’altra volta, ABA, TEACCH, Denver model, ehm… non so, l’CAA, la Comunicazione Aumentativa Alternativa, il FloorTime, il Sonrise, che è quello inglese… cioè, ce ne sono mille di cose. [....] Quindi, l’approccio è sempre quello, appunto, comportamentale, neo- comportamentista, non lo so, chiamalo come vuoi, con quelle tecniche lì. p. 185

[Cerchiamo] di integrare le tecniche comportamentistiche tradizionali e nelle loro evoluzioni anche più recenti con l’attenzione costante agli aspetti delle motivazioni, gli effetti, e la persona. Perché non può esserci un buon lavoro 412

riabilitativo e non si può garantire una buona qualità di vita alle persone di cui ci occupiamo se le trattiamo solo come una somma di comportamenti da correggere senza interrogarci su cosa c’è sotto quel comportamento, quali sono, per esempio il disagio o la sofferenza che un comportamento problema o problematico può esprimersi [....]Il problema è che si tratta di integrare tutte le tecniche comportamentiste con una costante attenzione a degli aspetti della soggettività, degli affetti, e delle emozioni della persona. Non siamo degli addestratori di cani, giusto? Abbiamo che fare comunque con le persone. p. 186

Allora, la filosofia è … in parte comportamentista, in parte umanista. Sono [così], perché comunque siamo italiani (ridendo) e secondo me molto umanista. Nel senso che ci piace che queste persone, oltre che lavorare sul comportamento, sull'abilità, lavori, uh, abbiano anche delle opportunità di sperimentare, delle esperienze che sembrano aver poco valore dal punto di vista dell'apprendimento, ma che hanno un grosso valore umano, come possono essere i compleanni, le feste di compleanno, le vacanze [....] Noi siamo, sì, secondo me siamo molto umanisti secondo me come filosofia. Che secondo me è anche una caratteristica molto italiana, secondo me, sì.

Lo strumento più importante è la relazione, capire [...] che [è] impossibile che quel bimbo non abbia nulla di dirci e se non ha nulla da dirci siamo noi che non riusciamo a leggere. Questo per cui la relazione. Chiar[amente in] un contesto accogliente e un contesto attento. Questo [è] fondamentale p. 187

Non è così e se tu non entri in relazione, se tu non hai una relazione con chi hai di fronte, non insegni mai niente. Mentre l'idea è che noi invece non ha... non entriamo in relazione con loro. Facciamo le maestrine, facciamo gli addrestratori, senza avere (ridendo) senza tener conto di tutta la parte invece relazionale-affettiva. Non può essere. Perché non può essere. Perché soltanto il fatto di stare qui a parlare con te, comunque c'è qualcosa, no? Se io comunque non entro in relazione con il ragazzo, il ragazzo mettelo far vedere, non ti risponde neanche. Infatti ci sono persone, ci sono dei ragazzi che con alcuni di noi non funzionano e con altri sì, e viceversa. Questa comunque è una cosa che è difficle da far capire.

Infatti io molto spesso mi sono trovata non molto d’accordo con dei colleghi perché è ovvio che devi avere una buona relazione con il paziente. Ma questa, lo devi e (claps) basta. Ma però devi costruire al livello di realtà delle cose, no? E quindi devi per forza fare anche degli esercizi o comunque avere un metodo. E questo mi dice “Non importa. Tu hai un metodo. Io un diverso metodo.”

Il nostro approccio è più – come dire – mi sembra più ecologico, cioè… come… 413

che il linguaggio debba nascere nel suo contesto naturale e non… per… Poi invece sul trattamento ABA in sé, come trattamento complessivo trovo che è molto efficace nelle abilità, nelle autonomie del bambino, questo è efficacissimo. Però sul linguaggio bisogna stare attenti, più attenti. p. 188

Allora, [la nostra filosofia è la] creazione di un contesto che noi abbiamo chiamato ecologico, ma che vuol dire, ecologico non vuol dire “in compagna.” Vuol dire armonica, vuol dire che attività, interventi, frequentazione di persone, tutta dev’essere armonizzata e ogni intervento che si fa con le persone con autismo dev’essere contestualizzata, eh? Non si propone una cosa che non c’entra niente in quel momento lì o in quell’ambiente. Questa è la premessa. Dopodiché, ogni intervento, attività di lavoro che viene proposta, deve essere significativo e questo significato deve essere spiegato, con le modalità adatte a quella persona, in modo che possa essere compreso. Inoltre, riteniamo che sia molto importante curare la soggettività della persona con autismo e quindi cercare di ampliare al massimo gli strumenti di comunciazione, ognuno a suo livello, e capire qual è la loro motivazione intrinsica perché questa è qualcosa che migliora la qualità della vita, anche per noi. [....] Infine... il fare insieme. Come ha detto Meltzoff, la famosa frase “from shared actions to shared minds.” Cioè quindi facendo insieme, si impara a stare insieme e forse anche si inizia a condividere il pensiero.

La psicomotricità deriva culturalmente della psichiatria e dell’educazione motoria della danza, della ritmica, quindi del movimento spontaneo. [....] Mentre per noi il movimento è il mezzo per l’espressione, per la comunicazione e per l’apprendimento. Non è un fine. p. 189

Allora, diciamo che con un bambino autistico, io essendo psicomotricista, ho un approccio da psicomotricista, col bambino autistico. Il fatto che ci sia l’animale, ovviamente, mi fa modificare alcuni aspetti… però non mi cambia radicalmente il mio modo di approcciarmi. Per cui quando un bambino entra in stanza, io vedo lui a cosa si rivolge, a cosa è interessato, cosa attira la sua attenzione. Perché specialmente con un bambino autistico, devi entrare un pochino nel loro mondo di interessi. Poi, cerchi di aprirli… al nostro mondo. p. 193

Sì, più o meno penso che siano questi due, cioè l'approccio TEACCH e l'approccio dinamico-relazionale, quello sicuramente. Tutto in una cornice molto flessibile, secondo me. [Per] flessibile intendo che non ci si (attiene) al manuale TEACCH in maniera così rigida ma si cerca anche poi di cogliere anche sfumature al di fuori dalla filosofia TEACCH, insomma, perché non esiste solo TEACCH. 414

p. 194

L'approccio usato è l'approccio psicocognitivo che è molto ampio e comunque abbiamo scelto, come dire, di considerare gli approcci classici quindi il TEACCH, ABA, soltanto per le parti che ci sembravano funzionali, quindi all'interno dell'approccio psicoeducativo abbiamo scelto soltanto quelle cose che ci sembravano utili per il nostro tipo di intervento, che è così particolare perché appunto noi non abbiamo una struttura. [Non ce l’abbiamo]. E quindi, come dire, il nostro lavoro è un lavoro itinerante. Quindi abbiamo considerato sicuramente la strutturazione del tempo, dell'ambiente, delle attività, quindi la pulizia del contesto che è molto importante, la consequenzialità delle azioni. Un’altra cosa molto importante, e... e questo poi ci aiuta chiaramente a dare loro un mondo prevedibile, conosciuto.

Qui in italia, c’è, si tende un po’ a sposare un approccio tipo “o fai TEACCH, o fai l’ABA, o fai...” no? È tutto un po’, non so dire, categorizzata, posso dire così? Invece ho un approccio, una formazione molto più ampia per cui cerco di prendere tutti gli approcci che ho conosciuto quello che serve per questo specifico bambino. Quindi delle strategie che derivano dal’ABA, strategie che derivano dell TEACCH, strategie che derivano anche dal DIR; ecc.

Volevamo dare segnali alle famiglie perché spesso ci dicevano, (mimicking, angry), “eh, ma voi fate il TEACCH.” “Sì, va bene, anche.” “ma nel TEACCH ci sono solo le scatolette.” “No, non è solo questo.” “Ma il TEACCH vuol dire che siete rigidi.” “No, non è solo questo. Qui entra in gioco l'educazione strutturata, I comportamenti e l'educazione-comportamento, cioè ci sono altre cose. Certo è tutto inserito nella filosofia TEACCH.” “Eh, no, ma è il metodo TEACCH.” “No, non è un metodo, è una filosofia, un programma, è diversa la cosa.” p. 195

Allora, a me piace – nonostante sia un metodo, mi sono ritrovata nel metodo Floortime, ma perché [...] il metodo Floortime, come tutti i metodi, ha delle regole precise, per cui tu devi – hai presente? – devi stare venti minuti con tuo figlio a casa, poi, 10 minuti no, poi altri 20 minuti – tipo otto volte in una giornata dedicare 20 minuti di attività e di interazione con il bambino. All’inizio, sulla carta, a me sembrava troppo rigida come cosa. Poi ho visto dei filmati di bambini… quando ci sono dei genitori adeguati in effetti è molto più utile. Allora io magari non farei 20 minuti otto volte al giorno, cioè mi sembra un po’ rigido questo. Però posso capire che è, come dire, un incentivo al genitore a dedicare dei momenti al bambino, di gioco e di attività e di interazione per aprire un po’, appunto, l’interesse, la gamma di interesse del bambino. Allora, probabilmente, viene data come una medicina, una ricetta, perché alla famiglia serve avere un’indicazione così precisa. Però, effettivamente… diciamo, le indicazione su come approcciarsi e su che tipo di attività fare sono molto utili. Allora, questo mi 415

piace, poi ti dico, io ho proprio sposato il principio di partire dal loro interesse, che è… è scritto subito nel Floortime, proprio quello, secondo me è la carta vincente.

Se uno dice, ”io faccio TEACCH, solo TEACCH,” è come dire leggo solo questo, allora questo diventa, però questo, secondo me, non solo per il TEACCH. Nella nostra vita questo vale un po’ per tutto. Allora il rischio a volte è dialogare sempre solo tra le stesse persone mentre è importante secondo me aprirsi anche a altri tipi di esperienze, integrare [....] Secondo me lo svantaggio può essere rimanere [...] poco flessibile, insomma. Già che i nostri ragazzini sono poco flessibili! (ridendo).

Secondo me, ad esempio, sia L'ABA che TEACCH di base hanno delle buon idee. Anch'io ogni tanto utilizzo della loro tecnica, però in modo poco rigido, cioè, il rischio di questa tecnica è creare una sorta di rigidità, quindi insegnare in sequenza va bene, però rischio che il ragazzo si irrigidisca, quindi se non fai la sequenza giusta, non va bene. È l'unica cosa che non condivido molto con questi metodi. Cioè, condivido il pensiero, ti faccio un esempio. Um, loro per insegnarti ad apparecchiare, ad esempio mettono un rettangolo verde, un cerchio giallo e un rettangolino rosso. Il ragazzo deve mettere la tavaglietta sopra il rettangolo verde, i tovaglioli sul rettangolo rosso, ed il piatto sopra il cerchio giallo. Quindi l'idea di per sé è funzionale, però io lo vedo molto poco naturale. Noi, io, per insegnare ai miei ragazzi ad apparecchiare, utilizzo lo stesso metodo ma in modo più naturale. Per cui ad esempio io lo metto il tovagliolo e la tavoletta, il ragazzo sa che deve mettere le posate sopra tovalgiolo e deve mettere il piatto sopra la tavoletta. Quindi la stessa tenica, però vista in modo meno rigido e più naturale. p. 196

Io credo che poi effettivamente una buona alimentazione aiuti tutti, però è una dieta rigida, togliendo tutta una seria di alimenti, poi rischia di provocare altri problemi di mancanza di alcuni principi, ecco, quindi questi sono effettivamente interventi un po' lontani dal nostro pensiero. p. 197

Floortime, proprio quello, secondo me è la carta vincente. Gli altri, appunto, Delacato, il TEACCH, sono troppo rigidi. Però con alcuni bambini… funzionano. Io partirei però, con i bambini piccoli, da un modello più flessibile, e a una certa età partirei con qualcosa di più rigido nel momento in cui il bambino ha bisogno di essere incanalato. Ma da piccoli [...] sono per destrutturare, aprire, rendere flessibili, perché questa è la nostra realtà. Se no io li irrigidisco, quando sono già rigidi. Voglio prima provare invece ad ammorbidirli. p. 198

416

Poi ci sono invece magari esperienze piacevoli, utili e buone, per i bambini, ma che vengono vendute come terapie, no? Non so… pet therapy, music therapy, horse therapy… che sono cose buone! …Ma non si sa ancora quanto è terapia. Esperienze piacevoli, che i bambini fanno volentieri, ma non sappiamo ancora se possono essere pensate come un vero e proprio intervento… terapeutico.

Poi ci possono essere altre cose, non so, l’ippoterapia o delfinoterapia, non è che è inutile, però non è specifica per l’autismo. Allora se a questo bambino piace l’acqua, piacciono gli animali e poi sia un ambiente stimolante e motivante per lui, e che dentro di quel contesto ovviamente lui può acquisire abilità sociocomunicative, ben venga. Ma non può fare solo quello. Cioè quello non è un intervento specifico sull’autismo. Poi se i genitori vogliono fornirgli, insomma, anche quel tipo di esperienza, perché no? p. 211

Abbiamo tutto una seria di laboratori a volte [...] proprio per permettere al ragazzo di crescere, diventare adulto, prendersi la responsabilità di alcune incombenze che sono legate al suo benessere perché è importante che un ragzzino, adolescente, poi diventato adulto, sia in grado di occuparsi. p. 214

Questo è un posto che come obiettivo ha quello di consentire un graduale distacco dalle famiglie perché, se noi parliamo di età adulta, i nostri ragazzi che non potranno conseguire altri obiettivi che hanno i normodotati: a laurearsi, sposarsi, eh, tranne 2, 3 casi che forse in un domani potranno vivere nel paese qua vicino. Però la maggior parte di loro vivrà qua dentro perché sarebbero in istituto se non ci fosse [questo servizio]. Quindi diciamo che un primo obiettivo con la famiglia è quello di favorire il distacco.

Chapter 5 p. 222

C’erano 3 colloqui al anno con la neuropsichiatra.Ogni tanto diceva disturbo generalizzato dello sviluppo, ma ogni volta ritardo mentale. È arrivata piano piano la diagnosis. Sentendo la mamme nella associazione, ho reso conto che vuole dire autismo. Ho chiesto la neuropsichiatra e ha detto di sì.

Infatti ho chiesto la neuropsichiatra, “mi scusi ma, è autistico o no?” Lei mi ha detto “no, non è autistico perché gli autistici hanno un comportamento molto diverso dove non miglioranno.” Così lei mi ho detto. Invece [figlio] migliora. Questa mi ha detto.

Io penso che è una diagnosi un po’ vaga che comprende tante [...] cioè non è 417

come tipo la sindrome di down che è più... come dire? Più caratteristica. Si capisce. Invece questa un po’... po’ generica. p. 225

Con parole mie, l’autismo è... non è una malattia ma è un modo di essere [....] dovremmo imparare fino da asilo che ognuno di noi è diverso dall’altro, quindi anche gli autistici non sono da guardare come delle persone strane, ma come le persone diverse da noi. Molto diverse da noi, chiaramente, certo. [....] Bisogna avere rispetto, ecco. Non togliere il rispetto che ognuno di noi individui sulla terra merita. Loro allo stesso modo hanno bisogno, hanno diritto dello stesso rispetto. p. 227

Io una cosa che ho insegnato a [mio figlio] che fortunatamente lui ha presso molto bene, io gli dico sempre “ogni persona ha delle difficoltà. Ogni persona è capace di fare una cosa, ma non è capace di farne un altra. Quindi tu non riuscirai, per dire, in matematica come altre persone che sono bravissime, però tu per esempio hai una memoria visiva eccezionale e quindi potrai fare qualcosa di molto bello utilizzando per esempio queste tue capacità.”

Siamo tutti un cerchio, nel senso che in questo cerchio abbiamo tutti pregi e difetti, ma siamo tutti un cerchio. Quindi dove c’è più di una cosa ce n’è più di un’altra. Quindi, voglio dire, tu avrai altre caratteristiche positive che non ha [sorella]. Quindi ognuno ha le sue specificità e le sue doti positive e ognuno ha le sue negatività. p. 228

Le dico: “[figlia], vedi? Tu in quelle scuole non puoi andare perché tu non parli”, le dico. E lei comincia: “Ma-ma-ma-ma”, capito? Perché è così. E allora le dico: “Tu vorresti andare in quella scuola?”. E lei mi dice: “No”. E… però le dico: “Vedi, [nipotina] adesso a settembre [la nipotina] inizia la scuola elementare”. E le dico: “Lei va dove ci sono tutti i bambini, che fanno i compiti, disegnano, mentre tu non riesci a farlo, però quello che riesci lo puoi fare lo stesso con la mamma e anche al centro dove tu vai.” Però io parlo, perché lei ti ascolta. p. 229

Allora, c’è stato un momento qualche anno fa in cui lui ha preso conoscienza. Mi rendevo conto perché piangeva spesso, era in angoscia. Ha preso coscienza un po’ dei suoi problemi. E allora cioè io l’ho detto nello stesso modo. Non è che mi sono soffermata a dare spiegazione a [figlio]. Ho detto “[figlio], tu sei una persona autistica, e quindi hai un tipo di comunicazione diverso da quello che ha 418

la mamma e la mamma voule cercare di capirti per poterti aiutare perché altrimenti è molto difficile aiutarti.” Ecco ancora oggi. Lui, ci siamo soffermati un attimino alla spiegazione. Dico “tu devi aiutarmi a capirti altrimenti io non ce la faccio perché sono meno intelligente di te.” p. 232

Lei sa un po’ sicuramente più di me quindi io mi remetto. Però io ho capito perché leggendo ... di qua e di là io ho capito che l’autismo non è solo una situazione, cioè non è, uh, ci sono vari tipi di autismo. Ci sono vari gradi. E [mio figlio] non ha un autismo pesante. Ha un autismo medio. Che non so se si può iscrivere nel Asperger oppure no. Questo non lo so.

Poi dopo mi sono un po’ distaccata perché ho cominciato a leggere “mio figlio andrà al liceo scientifico, mio figlio andrà al liceo classico, mio figlio andrà” e faccio “forse [figlio] non è così Asperger! (laughs) Non posso mandarlo a liceo, no?” mi sono sentita un po’ una pesce fuori d’aqua a leggendo questi forum dove parlano di Asperger [...][figlio] per certi tratti sarà asperger. Ma per certi no nel senso che come posso dire, un Apserger è un ragazzo che può andare al liceo, e mio non può andare al liceo. p. 234

Noi qualche dubbio l’avevamo poi quando [figlia] è venuta qua, dopo i primi tempi, ne abbiamo parlato anche con dottor [cognome], abbiamo detto “ma, ascolti, Lei concorda con la diagnosi, ci possono essere altre?” Lui mi ha detto “no, no, concordo, in pieno.” Ecco. E quindi questo c’è un po’... non è che ci ha tranquilizzato, nel senso che il problema è così però per lo meno dici “ti muovi in questa direzione, ti muovi” p. 235

Io dico sempre loro non hanno un ritardo mentale, loro hanno una diversa dimensione di apprendere quello che gli viene detto, quello che gli circonda, ma non hanno un ritardo mentale perché io mi rendo conto che [figlio] è in grado di fare, di pensare, e di mettere in atto delle strategie per arrivare a un suo obiettivo che noi non riusciamo neanche a pensare [....] Lui è molto più furbo di noi. Ecco. E quindi non posso pensare che una persona così abbia un ritardo mentale.

Mi hanno detto che probabilmente porta un ritardo cognitivo. Ma riusciva combinare guai quando è vicino noi. Se porta questa grave ritardo, perché è così sveglio, pronto di scappare, prende le cose di fratello? È furbo. [...] la cosa strana che non riuscivamo capire per quando lo psicologo dice ritardo cognitivo, ma è molto più sveglio che il primo filgio. [....] Non riuscivamo capire perché questo tanto intelligente di fare guai ma non voleva parlare, non seguiva quello che facevano gli altri. [….] Non parlava. A scuola con gli altri non disegnava, 419

non distinguiva le colore. Mi hanno detto per cui questo è ritardo. p. 244

Un giorno la direttrice ci ha convocato e ci ha detto che a [figlio] dovevamo somministrare dei farmaci perché altrimenti era troppo agitato, eccetera. Noi le abbiamo detto: “No, noi di farmaci non gliene somministriamo, perché il suo medico non ritiene opportuno dargli dei farmaci. Dovete voi cercare il modo di intervenire sui comportamenti di (figlio).” p. 248

Qui ci danno tanti consigli anche prattici, qua. Ad esempio ci hanno fatto vedere anche al centro diurno. So che diciamo così utilizzato metodo TEACCH quindi tutto fatto impostazione molto non so le schematiche, le impostazioni contro il muro. Uh o tutto immagini visivi che per [figlia] hanno funzionato bene perché anche tu dici le cose 10 volte, cerchi di riassuricarla su quello che viene dopo, su quello che viene dopo ancora. Ma verbalmente la cosa non funziona. Quando abbiamo visto sia in centro diurno che fuori dalla communità il suo panello con la sua foto, con tutte le fasi visivi, con lo staccare questa cosa. Ci siamo detti “ma caspita, bastava una cosa così forse per aiutare [figlia] a scuola, per aiutarci noi a casa, a darle rimando della scansione del tempo, delle fasi, delle cose che faceva, visivo, e non invece diciamo sempre verbalizzandole.”

Anche per noi era un aiuto perché lo psicologo è venuto a casa, ha visto come noi ci comportavamo con [figlio], quindi ha fatto tutta una sua diagnosi anche sulla base di qual’era il nostro atteggiamento, ci ha dato anche dell’indicazioni su come intervenire su quei comportamenti problematici che si erano evidenziati [....] per esempio, certe volte ci ha suggerito di ignorare cioè di non continuare a dire “lascia stare, lascia stare” ma di ignorare il comportamento in modo tale che prima o poi questo comportamento comunque si spegneva. p. 251

Se poi alla fine gli strumenti ho sempre preparato io ma ho voluto tenere separata il ruolo di medica rispetto dal roulo di mamma. Quindi preparavo tutto il materiale e lo passavo alla neuropsichiatra infantile e poi volevo che fosse lei ad interfacersi con gli inseganti. p. 255

Che cosa facesse veramente nelle ore di sostegno, quello che dicevo prima: adesso dice che l’insegnante di sostegno dormiva. Ne ha avute molte di insegnanti di sostegno, però il ritornello è sempre quello. Allora l’ora di sostegno era il ghetto. Cioè, il sostegno come veniva effettuato? I ragazzini venivano presi e venivano portati nell’aula di sostegno, e lì facevano… cosa non si sa. Il 420

sostegno ritengo che sia – debba svolgersi nell’aula, insieme agli altri, perché il sostegno serve a far sì che il portatore di handicap venga integrato nella classe, e invece allora funzionava così.

Non sempre ci sono i... presidi o i direttori che sono sensibili a questi problemi quindi anche lì ho dovuto fare delle belle lotte perché in prima elementare gli avevano dato solo 6 ore di sotegno. Non aveva una class dove andare, doveva stare in classe con gli altri qindi in pratica era un distastro. p. 256

M: Poi è andato al elementaria. Volevo che stasse con i bambini normodotati per imparare stare con loro. In quarto elementare, mi sono arrabbiata. A: Perché? M: Ha grandissima difficoltà. Ho tolto e ho mandato in una scuola speciale. (Una scuola per bambini con problemi gli occhi) A: come andava? M: [....] Molto bene. Soltanto due anni. Poi è andato alle medie. Ho fatto primo e secondo a scuola pubblica. Un disastro. Basta. Gli insegnanti non riescavano gestire la situazione. Le altre mamme non accettano. [Lui era] sempre da solo, isolato in una stanza con due insegnanti di sostegno.

E cosa mi ha detto: “[Signora], non fare (anche tu) l’errore più grande della mia vita, che ho fatto, di mandarla alle scuole medie, perché è un incubo”. Perché poi dipende tutto dagli insegnanti, poi, che trovi, eh?

Allora, l’elementarie è stata una fabula, Ariel, una fabula. Perché c’erano questi insegnanti molto disponibili, i bambini sono tutti amici, avevo bambini in casa tutti giorni, lui andava alle feste. Cioè è tutta una fabula, ti dico. Insegnanti, educatori, tutto bene. Una fabula. Alle medie è andata abbstanza bene nel senso che uh in classe stava un po’ meno però aveva una classe di sostegno dove c’erano un bel gruppo di ragazzini con vari tipi di problemi, non solo disabile intellittivo ma anche disagio di un ragazzino straniero, o un ragazzino addotatto, o un ragazzino con altre problematiche. Quindi erano un bel gruppetto. E direi che è andata abbastanza bene. Dal punto di vista di come dire didattico. Dal punto di visto di relazionale ti dico che ha perso tutti i suoi amici, e quindi suo gruppetto era quello di questi 4, 5, ragazzi qua. p. 258

Noi conosciamo persone che hanno figli con grossi handicap. E uno di questi ha preso una laurea. Quanto sia stata guadagnata questa laurea… per me è stata regalata. Però è stato fatto un danno, a mio parere. Perché questo ragazzo ha una laurea, e quindi ha delle aspettative, quelle aspettative che il fatto di avere quella laurea gli danno il diritto di avere. Ma purtroppo non le avrà mai, non saranno mai soddisfatte, queste aspettative. Perché vivi in un contesto in 421

cui…mmm… non – non c’è lavoro per i – per i soggetti normali. Oltretutto poi, ha anche delle problematiche che fanno sì che la sua laurea non potrai mai essere applicata in qualcosa di pratico. Per cui questo ragazzo sta veramente – è entrato in crisi, è entrato in crisi – sta veramente male! Se la sua famiglia, invece di mirare così in alto, avesse mirato molto più in basso e l’avesse inserito in un contesto magari lavorativo, a quest’ora magari avrebbe un lavoro, sarebbe soddisfatto. p. 259

Per i ragazzi come [figlio] non c’era possibilità di entrare in una scuola superiore perché nelle scuole superiori pretendono un autonomia di 80% e cioè allora vado io a fare la scuola superiore, cioè mio figlio non ci può andare. E quindi dopo i 4 anni di medie, si è appoggiato alla [servizio], di centri diurni.

C’era il problema di trovare qualcosa che lo inserisse in altri tipi di attività. Non ho voluto inserirlo in una scuola superiore perché dato che mi occupavo di scuole, come lavoro, sapevo che non erano attrezzate per quei problemi.

E poi niente, ho trovato questo posto perché doveva iniziare le scuole medie, e allora… cosa la mando a fare? Lì è peggio, nelle scuole medie, perché già aveva 13 anni, 14, è peggio. Perché i ragazzini già sono più grandi. E allora… ho deciso di mandarla in una scuola come… ho trovato questo posto, che è stata la mia salvazione [= salvezza], guardi. p. 261

E in quella struttura io ritenevo che la situazione per [figlia] - non perché non svolgeressero bene il loro compito ma perché quella struttura a mio parere non era compatibile con la patologia di [figlia]. E allora mi sono rifiutato. E ho avuto uno scontro con questa perché credeva di essere l’ottimus, la persona che saper dire, [...] si permette di giudicare una ragazza che ha visto mezz’ora e che io conosco tutta la mia vita. Permette che fosse un genitore sa meglio quali sono i problemi della figlia. Che posso ascoltare o il dottore o le persone che sono qui al centro, [mela] conoscono ormai da tanti anni. Se mi dicono una cosa, ascolto perché so che loro vivono quotidianamente. Siccome mi fido, dico, “va bene.” [....] Ma se tu credi di capire una persona per un solo colloquio che hai fatto, e di indirizzarla dove credi tu più opportuna perché lì c’è posto, lì c’è la tua situazione che ti fa comodo, no, questo no. p. 263

L’isolamento degli autistici non lo trovo giusto, perché secondo me, mio figlio se può andare insieme agli altri che magari uno è un po’ ritardato, l’altro ha un handicap motorio, eccetera, si integra molto meglio che quando è tra di loro. Perché ognuno di loro è abbastanza isolato [....] ma qua [al centro diurno], 422

diciamo per l’istruzione così, va bene, ma per le vacanze, oppure anche se fosse per la residenza penso che sia meglio che siano misti, secondo me.

All inizio per [mio marito] diciamo l’idea di mettere [figlia] in un ambiente di prsone con la sindrome di asperger era un modo per ghettizarla. Non riusciva a vedere la possibilità invece finalmente di una interazione per lei. Ok? Quando finalmente poi è venuto e si è reso conto che finalmente sua figlia interagiva con qualcuno.

Però l’ho guardato, ho detto no, perché la mia impressione che ho sempre avuto e anche un po’ su era, facciamogli frequentare sia posti dove ci sono le persone come lui ma anche posti dove ci sono le persone che sono diverse da lui. Dopo di (ecco) avevo capito che non funzionava così, che lui con le persone ‘normale,’ chiamiamole così, non si riusciva. E me metteva angoscia questo [servizio] come idea prima che lo vedesse, o parlasse con qualcuno, perché avevo l’esperienza di questa mia amica che ha cominciato con una associazione per i bambini Down da cui era scappata perché, mi diceva, e questo (lo vivono pochi), tutti genitori dicono il stesso problema, secondo me non è che si sollieva d’animo. Ecco. Ci si angoscia di più. E quindi primo ho detto no. p. 264

Io sono rimasta molto stupita perché ho trovato molto silenzio. Cosa che non c’era a [l’altro servizio], che c’era una confusione (inaudible). Io sono entrata e ho detto: mi sembra quasi un paradiso qua, per questi ragazzi, lo giuro! Perché là era un caos indefinibile. E dicevo: “Come fanno questi ragazzi autistici a essere qui impegnati?” perché li ho visti al loro tavolo, che facevano le loro cose, non so che cosa, però… molto contenuti, molto impegnati. Ecco, questa è stata la mia prima impressione: il silenzio, di questi ragazzi, occupati ai tavoli e tutto silenzio. Gli educatori che giravano tra i tavoli… Questa è stata la mia impressione. Perché a [figlio] dava molto fastidio la confusione, il rumore… e ho detto: “mah, forse questa è la struttura giusta per lui”.

[A scuola andava] male. Veniva promosso. In realtà è arrivata qui non sa leggere, scrivere, nulla [....]Tempo perso era. Sempre discussione con professori, ligiti, iperattiva, non sta alla banca. Qui primi giorni non sta alla banca. Era convinta che l’unica cosa per andare a casa era butta sulla terra. La scuola mi chiamava, riprendevola. Ho spiegato all’educatrici, e mi hanno detto no, la ragazza stava re-educata cento per cento. p. 265

Però sicuramente ha trovato personale preparato che comunque di fronte a queste cose non si sono tra virgolette né spaventati né... perché poi la sua preoccupazione era sempre da dire “non mi volgiono più, mi mandono via.” Perché il suo vissuto era di quella che faceva così e che poi veniva comunque 423

allontata. Allontanata dalla scuola, allontanata dal centro dove è andata, allontanata dal centro diurno, allontanata da noi, allontanata quindi. p. 270

Spero che in questo modo mio figlio sia impegnato. Ne fare cose che piacciono a lui. E stare in mezzo agli altri. E di fare attività sportiva e... e... di essere diventare così sempre più autonomo.

Gli piace. Inizialmente qualche volte non ci voleva andare lì, su quando... sì. Poi ... piano piano perché prima appunto faceva fatica anche a proprio... a doveva uscire in quel determinato momento. Invece poi è diventata anche una routine, una cosa abitudinale, quindi... si è un po’ abituato, no? ad avere questo impegno.

Ma a me piace tutto. Guardi. Per pur che lui faccia qualcosa, vede gli interessi [....] Poi tutto il resto mi piacerebbe appunto che potesse fare qualcosa di, non a pagamento per carità ma fare qualcosa che non sia solo divertimento [....] Se facesse qualcosa magari di, non solo di divertamento, magari di ... potesse fare qualcosa di impegno come più se, l’impegno proprio, magari potrebbe essere utile, come non so se è mai stata pensata di una cosa così. p. 272

Io spero che per lui diventa un po’ veramente come la sua casa. Adesso è ancora un po’ presto. [....] [servizio] rapprasenta il suo posto di lavoro dove lui va a lavorare da lunedì a venerdì. [....] Per me è da intendere che [figlio] lo usa, usa [servizio] veramente come suo luogo di lavoro, la sua attività. Però poi c’è una casa dove invece ha le sue cose. Il futuro potrà essere che lì si riarreda la sua stanza. Secondo me il momento in cui lui comincierà a riaddersarsi la sua stanza forse sarebbe venuto il momento dove la sua casa diventerà [servizo] però manca ancora tanto tempo. Secondo me quando diventerà veramente un uomo grande. Piano piano inzierà fare questo processo. p. 274

E quindi siccome ero stato lasciata abbastanza sola e ero... non ero più in grado di gestire la sitauzione, mi rendevo conto. Stavo male io, stava male lui, stavamo mali tutti quanti. E niente, l’ho portato a [communità]. E in effetti in una settimana là, le cose erano decisamente migliorate. Lui stava decisamente meglio. Quindi, ho detto “va bene, una settimana di monitoraggio l’ha fatta, adesso riproviamo a tornare a casa.” Non eravamo ancora arrivati a casa, era tutto come primo. Tutto come primo. Infatti mi ricordo che ho durato ancora un mese, ho tenuto duro [....] alla fine ho ceduto, ho detto che “lo mandiamo in communità” anche se io non ero per niente d’accordo, perché io non volevo staccarmi da un ragazzo di 16 anni. Però non vedevo alternativa, ecco, perché siccome mi hanno detto che con i farmaci non si ottiene nulla, non si riesce a 424

calmarlo, ed era vero.

Poi sa le gente, parenti, alcuni “ah! L’avete messa in istituto, eh!, come mai!” Cioè un istituto che poi, va be’, diciamo che la communità è un’altra cosa. Va be’, ma io queste cose non... non è che mi importa, mi importa che la scelta di [figlia], e per lei è stata la cosa più giusta, ecco [....] se devo essere sincera, quando andiamo portato qua [figlia] com’è, la, il passo successivo era quello poi di poter tornare a casa. Che [figlia] potesse tornare a casa. Con noi. Da poter stare noi. Però siccome questo passo l’abbiamo già fatto, e forse come mamma ho anche capito che non sempre stare con la mamma e il papà è la cosa più giusta. Magari può sembrare a noi, ma no per lei. p. 276

P: Gli obiettivi che lei diventi sempre più autonoma e faccia una vita, e abbia anche un futuro buono. Gli obiettivi sono quelli. M: Serena, e che sia sempre contenta di venire qua. Perché altri posti dove … non è possibile. Anche loro andamenti, la loro quotidianità.

Io vorrei una cosa o così o comunque un apartamento però protetto nel senso, da solo non può stare, ovviamente. Qualcosa... vorrei... essere tranquilla, dire OK mio figlio è in grado anche da stare da solo. p. 277

Noi parliamo di serenità psicologica, cioè la capacità di sentirsi sicuri e quindi di poter prevedere quello che succede quindi in grado di scegliere. E non è soltanto imparare ma credo proprio poter affrontare le scelte e realizzare delle cose, dei comportamenti nuovi, delle abitudini [....] Tutti, credo, siamo molto convinti in questa famiglia che vale molto anche per le persone cosidette normali. Sono persone normali magari molto intelligenti paralizzate dell’ansia, del nervosismo, dall’incapacità di decidere. In uno soggetto autistico, oh, si vede molto di più!

l’obettivo primario è – [figlio] è solo, ha bisogno di un gruppo amicale quindi un bel gruppo amicale. Cioè lui aspetta il venerdì per vedere i suoi amici e il gioco di squadra, lo stare insieme. E l’andar via anche da solo senza i genitori. Lo rende più autonomo possibile. Quindi il raggiungamento di un distacco, di un autonomia, ma sopratutto il sentirsi bello cioè mio gruppo di amici, ok? Anch’io ce ho mio gruppo di amici

Per fortuna c’è [servizio] che è una cosa molto postiva per lui e alla domenica almeno ha un momento di ritrovo con delle altre persone, con degli altri ragazzi. E lo vedo molto contento [….] Proprio da subito ho capito che lui ha capito. Perché quando io ho detto “guarda, andiamo a un posto dove ci sono dei ragazzi che fanno un po’ fatica fare amicizia, come te.” Basta. Lui è stato al suo.. forse lui si è sentito uguali agli altri. 425

Chapter 6 p. 286

P: Ma non lo se lei rende conto di quello che non ha, di quello che le manca. M: Non si riesce a capire. P: Per lei [è] la sua vita, per lei [è] sempre una vita buona. Una vita - M: Sì, ha le sue cose - P: Però non so se si rende conto che le manca quello che ha una persona normale, ecco. M: Anche se in realtà quando andiamo dalla sorella che ha i bambini... però non - P: - non più di tanto - M: Non penso che lei riesca a capire nel senso di dire “mia sorella c’è l’ha bambini, ha un marito, io no.” ecco non penso che [abbia] questo. Forse con ritardo... P: Non lo so nella sua mente cosa - M: - cosa pensa - P: - cosa pensa. M: Perché lei ascolta. P: Ascolta tutto. M: Non le scappa niente. p. 287

Io sono sicura che lui in parte percepisce i suoi limiti, e in parte no. Allora, la parte più fortunata è quella che non li percepisce, perché per esempio ho sempre pensato che [qualcuno che conosco con un’altra disabilità] ha avuto, avesse avuto una vita così infelice un po’ perché aveva un cattivo carattere e un po’ perché era molto molto consapevole di avere dei limiti. E questa [cosa] debba veramente... [essere reso] infuriato. p. 288

nel mondo in cui viviamo adesso io penso che un soggetto autistico, la cosa fondamentale forse è che non si accorga della diversità. Perché al momento in cui, nel quale [figlio] se dovesse accorgere che è diverso degli altri, sarebbe un dispiacere grande, per lui eh? E di conseguenza sarebbe un dispiacere anche per me. Se devo pensare che [figlio] autistico infelice direi proprio di no. io direi anzi che nella sua ingenuità, è tanto felice. Il problema che ho io in confronto del mondo con autismo di mio filgio è che ho paura che il mondo non lo comprenda. p. 290

Gli abbiamo confermato quello che lui diciamo già notava, che ha questi... questi 426

suoi interessi. Che abbiamo fatto notare [che] dei suoi coetani avevano altri interessi, che lui non ascoltava tanto, che si isolava. E poi il fatto che a volte parla da solo. Um. Diciamo io ho fatto notare i suoi comportamenti, abbiamo ragionato su quelli. [....] Uh, lui dice “tratti autistici” perché una volta siamo andati a una mostra sull’autismo e c’erano delle, tipo, degli esempi di comportamenti di ragazzi autistici, e lui si è riconosciuto, ha detto, tipo ha letto delle cose, ha detto “ah, ma anch’io sono così. Ah, tipo come faccio io.”

Ma sì, nel senso: ho qualcosa, so quello che ho, la chiamo così, non mi fa piacere ma almeno so che cos’ho. Non sono un deficiente, perché tutti gli hanno sempre detto che gli Asperger sono così intelligenti, lui stesso ha letto delle cose, io gli ho fatto leggere anche dei libri che abbiamo comprato [inaudible]. Per cui non è stato semplicissimo, magari, però non è stato neanche così traumatico. Io credo che [figlio] avesse bisogno di sentirsi comunque compreso in qualcosa, cioè, di dire… ho la febbre, so che ho l’influenza e non ho la broncopolmonite, per dire..

Io sinceramente a 14 anni mi [ero] già auto-diagnosticato la sindrome di Asperger. Però continuavo ad andare da uno psicologo, pensavo di avere qualcos’altro. Infatti sono andato più volte dallo psicologo per garantire che avevo la sindrome di Asperger. Avevo scritto su un foglio le mie possibili diciamo sindromi. Avevo scritto che potevo avere o un disturbo ossessivo-compulsivo, oppure potevo avere la sindrome di Asperger. Allora io sono andato dallo psicologo circa un annetto fa e io ho chiesto “ma secondo Lei, è un disturbo ossessivo-compulsivo?” e lui mi ha detto “no, assolutamente no.” e così ho capito che, e così ho escluso una delle 2 possibilità che ho detto allora, ho la sindrome di Asperger perché io già a 14 anni avevo iniziato... avevo fatto l’ipotesi che io avevo o disturbo ossessivo-compulsivo o la sindrome di Asperger. E poi a 17 ho avuto la conferma di avere la sindrome di Asperger [....] infatti appena lo psicologo mi ha detto “tu hai la sindrome di Asperger” io ho sorriso. eh sì, perché ero contento che da solo mi sono riuscito a diagnosticarmi la cosa. p. 293

Allora prima sono stato diagnosticato, uh, depresso. Poi anche prima Asperger. Prima ho avuto un deficit di attenzione. Prima ancora pensavano che io fossi assolutamente autistico. Prima pensavano che io fossi psicopatico, e prima ancora pensavano che io fossi ansioso, e prima ancora neurotico [....] Chissà cosa penseranno che io sia dopo! p. 294

R2 Secondo me, Ariel [...] la sindrome di Asperger non esiste. Cioè, uno che gli è definito strano dagli altri o in pratica non si sa che cosa più parli, gli dicono che la ha sindrome di asperger. Io sinceremente non credo di aver la sindrome di Asperger anche perché se (vai a leggere) i sintomi dalla sindrome di asperger, praticamente tutto il mondo ha la sindrome di Asperger. Visto che (quanti) 427

sintomi ha la sindrome di asperger, 50 sintomi. R3 [....] Tutto quello che non è un sintomo di qualcos’altro e anche un po’ di robe che sono sintomi di qualcos’altro sono sintomi di asperger. R2Se sei troppo intelligente hai la sindrome di Asperger [....] Se ti muovi male in educazione fisica, puoi avere la sindrome di Asperger. Se fissi le persone negli occhi mentre parli, puoi avere la sindrome di Asperger, se non le fissi, puoi avere la sindrome di asperger. Se sei geek puoi avere la sindrome di asperger. Ogni cosa puoi avere la sindrome di asperger. R3 Se sei disorganizzato hai la sindrome di asperger, se sei troppo organizz--, se sei metodico, hai la sindrome di asgerger. R2 Se scrivi male, la sindrome di asperger. Qualsiasi cosa. Io sinceremente credo di... non ho la sindrome di Asperger. Io - R3 Se hai interessi, se hai degli interessi, se hai degli interessi part-, se hai degli interessi particolari che ti piacciono più degli altri, hai la sindrome di Asperger R4 Ecco- R2 Sì, se non ti piace legare con le altre persone perché semplicemente le consideri inferiori al tuo livello intellettivo e talmente stupide da non riuscire a capire niente di quello che (fai) - R3: [....] Non sei un Asperger, in quel caso se (inaudible) perché li consideri inferiori sei semplicemente un sociopatico. R2: Ma io vengo considerato Asperger. E solo perché, (uno) viene portato dallo psicologo da bambino solo perché tipo non ti piace uscire con gli altri bambini oppure non... non vuoi fare le cose, non rispetti bene le regole, ecc. R3: Se hai un’opinione che ai tuoi genitori non piace, vieni portato dallo psicologo e loro non (mollano finché non ti classificano) qualcosa. Ma visto che il fatto non c’è ne sa una patologia vera per cui classificare semplicemente un’opinione diversa, finisci comunque classificato Asperger, perché gli psicologi - essendo comunque dei medici - hanno un’informazione professionale anche loro abbastanza patologica, devono classificare tutto come (una serie comunque gli mettono) l’etichetta a tutto. Ormai con tutti (inaudible) ci smettono di considerare i pazienti come delle persone, le considerano semplicemente un ammassa di sintomi. A: [R4], cosa pensi? R4: E, cosa? R2: Infatti anch’io quando R3 dice che si sente come una nuova specie di razza umana, anch’io molto mi ha capitato di pensarlo. Di essere un uomo sapiens sapiens sapiens. Una nuova specie di essere umano. R4: (R2), scusa A: Grazie per i commenti ma si, aspetta (R4). R4 Prego, Ariel, ma io personalmente [mi definirei come] una mania così di certe cose, per esempio mi piacciono i videogiochi di guerra, i film, prevalentamente di Mel Gibson. p. 298

E ho ritrovato subito lui. Lui si è ritrovato meno. Io ho capito, sì è vero, quasi 428

tutto è lui. Ecco. E lui invece fa più fatica. Adesso no. Adesso essagera dall’altra parte. Sta facendo, ha fatto un filmato perché da, che faranno vedere allo stadio, sull’Asperger, in cui c’è lui, che è una cosa insomma (laugh/snort) abbastanza pubblica. p. 308

Papà, mi dispiace per come mi sono comportato ieri sera. Non mi piace dire bugie. Papà, sono arrbbiato con te perché hai detto che sono licenziato. Non sono licenziato. Lavoro al Centro. Vado al Centro ogni giorno e il Centro è mio lavoro. Per favore, non dire bugie di più. p. 309

Penso che, penso soprattutto a quello che dice la dottoressa [cognome], al “dopo di me.” Al “dopo di me.” Perché [figlio] me l’ha detto l’altra volta, parlavamo dei morti, perché nel giro di 3 anni ho perso mio marito, mio padre e mia madre. E lui mi fa, mi ha detto “mamma, poi morirai anche tu” e io ho detto “[figlio], sai, succede quando si diventa vecchi, poi si muore.” Lui mi guarda, lui fa “cosa voul dire, che resterò solo?” Cosa si risponde così? E dico “[figlio], avrai tanti amici, tante persone che ti vorranno bene, e che sostituiranno in parte quello che ... non ti potrò dare io.” Però sono domande che lasciano il cuore stretto. p. 310

Uno dei miei psichiatri me l’ ha detto. Sono andato a trovarlo, mi sono trovato bene. Poi ho cominciato ad essere incazzato perché ho realizzato che c’erano, c’era un sacco di problemi che nessuno ha voluto affrontare, poi ho detto “perché sono... perché sono incazzato? È un bel posto. Ci sono le persone che mi piacciono. Potrei usare la mia intelligenza superiore a renderlo un posto migliore.” Sto provando ancora. p. 312

Sì, secondo me l’obiettivo è quello, far conoscere diciamo far conoscere più persone perché una persona diciamo Asperger non sa neanche come fare a conoscere gli altri Asperger. Cioè non può andare su facebook e scrivere “persone con la sindrome di asperger” e far vedere degli amici che si può trovare. O comunque cioè non c’è un posto dove può trovarle. L’unico posto per trovare anche persone con la sindrome di Asperger è venire qui e magari legare più amicizie con persone simile a te. Basta. p. 313

Quindi... in realtà poi sempre con gli insegnanti abbiamo sempre instaurato dei rapporti eccezionali. Ancora oggi insegnanti di sostegno vengono a trovarci o i 429

ragazzi che venivano a fare terapia, terapia a [figlia].

Beh, ne parla tuttora e [figlio] se [gli si] parla di [educatore], lui è contentissimo, cioè ne ha un ricordo bellissimo. Poi mentre era con questo [educatore] in questo centro sportivo italiano, ha conosciuto una ragazza, maestra di pattinaggio, e educatrice, che lo ha affiancato dopo [educatore] e che l’ha un po’ sostituito diciamo così [....] L’ha seguito tanto, anche con lei abbiamo tenuto dei buoni risultati. Una ragazza, una figura diversa. Lui ci è molto legato alla ragazza. Ancora la vediamo. Non l’abbiamo vista finché [figlio] è entrato qua (sigh) ma comunque si sentono al telefono anche l’altro giorno si sono sentiti quindi è una figura che è presente. p. 314

E poi c’è... [ci sono] i due piscologi che vengono qui ad aiutare, va be’, tu mi state simpatici. E quindi vengo anche per quello perché mi piace passare tempo con persone tipo psicologi o robe del genere. [....] Non mi piace stare dove non ci siano loro. Cioè a me piace stare in un posto dove diciamo ci sono gli psicologi che capiscono ecc. Io vengo qui più che altro per essere ascoltato da loro perché loro mi ascoltano sempre, anche tu [....] non mi interessa gli altri ragazzi, le altre persone che vengono qui. p. 315

E poi tipo ho fatto amicizia con la psicologa, mi piaceva andare lì, per me era divertente perché era una persona che diciamo si interssava ad ascoltare quello che dicevo. Che pochissimi lo fanno, cioè nessuno lo fa.

R: Quello attuale è probabilmente il migliore. Ascolta tanto. A: Che tipo di professionista è? R: Porc—Non ho ancora capito. Ascolta. Non mi tratta con condiscendenza. Non mi costringe di prendere farmaci. Ecc. Come dicono nel Simpsons, è un tipo speciale di “speaking doctor.”

È stato simpatico, uno molto comprensivo, paziente. Spesso mi aiutava. E quando ero molto giù perché avevo problemi con i miei compagni di classe spesso mi raccontava che lui quando era all’università anche lui ha avuto problemi con i compagni, facevano i prepotenti con lui, sopratutto con qualche professore che lui prendeva in giro.

Stavano… non stavano provando a rendermi migliore. Stavano provando a fare le cose al posto mio. Una volta ero così incazzato del fatto che uno di loro ha scritto sull’agenda mia, il mio compito, che l’ho buttata fuori dalla finestra. Sì perché posso, ho passato settimane, mesi, a dirgli, “Vorrei che tu smetta. Devo imparare a fare da solo.” Non ha mai, non mi ha mai ascoltato, porbabilmente perché non ha pensato, ha pensato che il suo lavoro non era quello di rendermi una persona 430

migliore, ha pensato che io fossi qualche sorta di bambino buono a nulla che non ha – che ha bisogno di qualcuno che faccia per lui.

Chapter 7 p. 323

Antropologa: Ma invece [di] autismo [Lei] ha detto psicopedagogia? Rispondente: Psicologia e psicopedagogia. Neuropsicologia, le neuroscienze. Però voglio dire, mentre la psichiatria è più collegata con la malattia mentale, e che voul dire proprio la persona matta, la persona folle, la persona psicopatica, la persona sociopatica, la persona con disturbi di personalità, mm? La persona con autismo non è necessariamente mentalmente patologica. Ci può essere, può esserci una codiagnosi, no? Ma non si può dare per scontato [che] la persona con autismo è una persona che va nel campo della psichiatria. Non necessariamente. A: E la psicologia e la psicopedagogia è considerata una parte della medicina o un’altra cosa? R: No no no no. storicamente in Italia nasce più dalla branca filosofica. p. 325

Pensavamo che non fosse una cosa neurologica e invece negli studi ho capito che è proprio una cosa di struttura del cervello, un problema fisico. Questo è quello che ho capito, la causa è questa. Una parte del cervello lavora in un certo modo

Nelle fattispecie appunto di [figlio] [...] [alcune delle] caselle del suo cervello che erano molto più avanti. No? Invece in certe altre cose anche molto semplici come un giorno, per esempio, ho detto “[figlio], apri l’ombrello.” Lui non era capace di aprire l’ombrello.

Lei socializza magari con i bambini piccoli. Non magari con i giovani. Perché lei… è bambina! È grande come donna, perché già ormai… però è piccola come cervello, purtroppo. p. 326

[Vengono] fuori queste... macchie, queste zone, così, che però ha detto la neurologa [che] non giustificavano il ritardo nel linguaggio di [figlio]. Giustificavano un ritardo, ma non un ritardo così avanzato come quello. Per questo lei fece questa diagnosi che c’era un ritardo mentale, ma la sindrome dell’autismo un po’ copriva questa cosa, cioè era più in quella direzione che la difficoltà di comunicazione di [figlio] – sempre più evidente – era giustificabile con l’autismo piuttosto che con questo ritardo mentale.

Ho provato a farle fare degli - ma ancora addesso - facciamo un po’ delle cose 431

per conto mio, tipo il brain gym, cioè quindi partendo da una stimolazione, facendo dei movimenti corporei, c’è una maggior fluidità di pensiero. p. 327

C’è una ricerca a cui ha partecipato anche l’Italia, che sta arrivando… non so quanto [sia] lontana a dimostrarlo, l’origine autoimmune dell’autismo. Cioè, secondo cui può essere un qualcosa che entra, potrebbe essere un virus, un banale - e io aggiungo, perché non un virus attenuato come quello di un vaccino? - in gravidanza o nei primi mesi di vita, che scatena una reazione autoimmune. p. 328

È un gastroenterologo che per primo ha cominciato a curare bambini autistici rendendosi conto che la maggior parte di essi aveva dei disturbi intestinali [....] se viene a contatto con glutine con le sostanze... loro sono più intolleranti che allergici, sono molto più, quindi è una forma meno grave, però il loro intestino è compromesso, cioè, almeno al tempo, quando lui fece questa diagnosi, mi disse che ormai l’intestino di (figlio) era dann[eggiat]o, che aveva dei problemi e quindi che non erano stati capiti ed era ormai molto infiammato. In effetti lui ancora oggi nonostante si curi, quotidianamente prende iuna pastiglia per questo problema e stia a dieta quindi con assenza di glutine e beh, sostanzialmente con assenza di glutine. Prima anche caseina, adesso la caseina l’abbiamo reintrodotta. Cioè lui appunto ha dei periodi lunghissimi in cui è sempre molto gonfio. E questo è strano perché non si riesce a fare una statistica. Prima questo corrispondeva con i periodi di maggior rilassatezza da parte sua. Quindi metteva su peso e si gonfiava. Ora non è così, ora è il contrario. Ora si gonfia quando è agitato. Quindi si può pensare che sia anche un’ingestione continua di aria, tanta.

Leggendo adesso tutte queste informazioni su questi vaccini che hanno creato danni, ho letto che questi vaccini economici venivano fatti utilizzando il mercurio, che adesso tutti noi sappiamo che il mercurio causa danni al cervello. p. 330

Secondo me è opportuno inserire i ragazzi autistici in strutture specializzate. Soprattutto perché gli educatori sono preparati specificamente per lavorare con ragazzi autsitici. Le attività sono adeguate ai ragazzi autistici. p. 331

Anche grazie ai miei genitori che hanno trovato questo sezione [cioè, il servizio] perché loro mi hanno consigliato infatti erano anche al loro merito, se non sono [sic] per loro, non sapevo con chi relazionarmi, non sapevo con cui parlavo.

432

Non ci ha spiegato nulla sull’autismo! Non ci ha detto nulla. Continuava a dire che questo bambino aveva problemi [....] e lei non arrivava mai al dunque, non arrivava mai al dunque, mi aveva un po’ innervosita la cosa, ecco. Alla fine, è stato il papà a dire “ma Lei sta dicendo che nostro figlio è autistico?” E lei ha detto “sì, è autistico.” Ecco perché lei non riusciva ad arrivare al dunque. p. 334

Ho notato che non guardavo mai... a volte avevo paura di guardare in faccia le persone, oppure quando le guardavo in faccia le guardavo in modo pronunciato cioè le guardavo troppo, quasi le fissivo con ... le inquietavo. Quando guardavo una persona non guardavo lei ma le guardavo attraverso, guardo un muro che c’era dietro. La persona era come se fosse invisibile. Molto spesso, e poi, sottovalutavo, sottovaluto tantissimo le persone [....] E poi ho fatto vari test di intelligenza su internet e tutti mi portavano al risultato alto. p. 336

[Era] bello perché io l’ho condiviso appieno – è che era una terapia che coinvolgeva anche la famiglia, per cui nel periodo in cui [figlia] faceva la terapia in contemporanea, la facevo anch’io. E quindi cioè questo [era] lavorare insieme sicuramente era, cioè ci si preparava insieme per andare, si facevamo le cose insieme.

Comunque credo il Risperdol gliel’ho dato. Ho provato a darglielo, non so quanti giorni, se 15 giorni o cosa, ho visto un peggioramento e lì io ignorante gliel’ho tolto di colpo, cosa che mi hanno detto che non avrei dovuto togliere di colpo, avrei dovuto toglierlo piano piano. Io non lo sapevo. E un giorno ho detto “Basta! Non glielo do più.” Però sono contenta. [....] Ma considerando tutti viaggi e che [figlio] ormai da tempo mi diceva “Mamma sono stanco, non voglio più andare e lo stesso psicologo dopo che io avevo portato [figlio], magari usciva 5 minuti prima e diceva “Siamo usciti perché tanto non voule lavorare.” Allora ho detto: “[figlio] è stanco. Non ha più voglia di fare queste cose. È inutile che perdiamo tutto questo tempo perché portando a terapia [figlio] non aveva più il tempo per fare altre attività. Infatti non poteva fare musica, non poteva fare sport.” E allora io a un certo punto ho detto: “Basta, io blocco tutto.” Ho detto: “Basta, terapie.” E quel tempo l’ho dedicato alla musica e allo sport. E [figlio] ha avuto dei miglioramenti incredibili. Ecco. È stata la scelta fortunata. p. 337

[Spero] che la situazione migliori [nel servizio]. Che prendano qualche educatore in più. E che diventino autonomi nella gestione di [figlio] perché io adesso lo seguo molto, eh? [....] Insomma [spero] che si arrangino un po’ più da soli.

433

Con i professionisti conosciuti sono stata molto in disaccordo con quel equipe di Delacato. Proprio perché promuovono un programma standardizzato, non personalizzato [...] [mi hanno detto che] ero io che non riuscivo a portare avanti il programma. Quando secondo me era un programma che non era adattato su le sue - sui soui bisogni o soprattutto sulle tolleranze. p. 338

E invece è un metodo che funziona bene, perché solo un’istituzione possa dare al ragazzo autistico la serenità, la disciplina, l’ordine di cui hanno tanto bisogno. In famiglia non si riesce. Le famiglie che conosciamo noi non sono in grado di seguire sempre una routine stabilita, studiata, in modo scientifico. Non siamo capaci. Non noi, ma neanche le altre famiglie che conosciamo.

Invece sa dove ci hanno detto che c’è una presa in carico totale, un papà che abbiamo conosciuto 8, 9 anni fa [....] Lui ha vissuto in Nuova Zelanda, per tanti anni. In Nuova Zelanda ha detto che prendono in carico dal momento in cui nasce il bambino, “io facevo solo il papà.” p. 339

Sì sì, ero tutto io nel senso che poi dopo mi sono, diciamo che ho... se poi alla fine li strumenti ho sempre preparati io, ma ho voluto tenere separati il ruolo di medico rispetto al roulo di mamma. Quindi preparavo tutto il materiale e lo passavo alla neuropsichiatra infantile e poi volevo che fosse lei ad interfacciarsi con gli insegnanti. Questo per non fare, insomma, la mamma, tuttofare, comunque ci sono dei ruoli secondo me, c’è un certo ordine da rispettare. Questo non toglie, chiaramente abbiamo degli ottimi rapporti quindi gli insegnanti sapevano perfettamente chi è dietro questa cosa, c’ero io e abbiamo un ottimo rapporto ma comunque ritengo che sia importante, ecco che ci sia, io sono convinta che è stato molto importante anche il rispetto dei ruoli in cui una mamma comunque anche se medico faccia la mamma ci sia neuropsichiatra competente – questa è un’altra cosa molto importante sopratutto in Italia dove la competenza sull’autismo da parte della neuropsichiatria è vicina allo zero – e poi una scuola recettiva con la voglia di imparare.

Sono stata in seconda elementare molto fortunata a un certo punto, aveva un’insegnante molto capace, molto molto brava, che all’inizio mi ha detto: “Lei stia fuori, sì, faccia la mamma.” (Ridendo.) Poi dopo un paio di settimane mi ha detto: “[Figlia] è molto complicata. Vediamo di lavorarci insieme.” Ho detto: “Benissimo, lavoriamo insieme.” Quindi abbiamo fatto delle cose insieme e lei è stata bravissima. Devo dire che è stata bravissima. p. 340

Non si poteva assolutamente immaginare qualche cosa che riguardasse un 434

problema mentale. Non so, anche litigando con sua sorella, se lei gli diceva, o io magari: “Cos’hai nella testa?”. Assolutamente, una frase da evitare in tutti i modi, perché era una cosa… [una] tragedia, si arrabbiava da morire. Oppure: “Ma sei scemo?”, oppure… dirgli una cosa così, che riguardava le malattie mentali, diciamo… o “sei fuori di testa”, fare riferimento alla testa o al cervello, era una cosa assolutamente… lo mandava su tutte le furie, perché chiaramente. p. 341

Secondo loro il fatto che noi abbiamo scoperto tardi, tra virgolette, che [figlio] fosse autistico... è stata una cosa positiva nel senso che noi abbiamo sempre... um... cercato di... uh... sbloccarlo nel linguaggio, nel fare le cose. Nella sua indipendenza. Abbiamo sempre insistito. [....] Però loro dicevano, appunto la dottoressa diceva che secondo lei il fatto comunque di ... che l’abbiamo stimolato veramente tanto. È stato stimolato “over” proprio in modo molto... poi magari l’avremmo fatto lo stesso anche se sapevamo che era autistico prima, però.

Sono stata molto fortunata perché nella... intanto appunto mi ha detto che... non si poteva ancora (trarre) una diagnosi totale, diciamo, perché era troppo piccolina. E che comunque lavorando molto, c’erano molti margini, molti margini di recupero. Quindi non è stato dato un verdetto assolutamente. Mi è stato detto [che] c’è molto da lavorare. E ci siamo messi a lavorare. Questo aiutava tanto. Cioè mi ha, in qualche modo mi ha fatto sentire un po’ soggetto ancora, non vittima di una patologia ma ancora soggetto in grado di poter fare delle cose. p. 342

Quando dovevo spiegare tipo alle persone a cui ero affezionato che ero Asperger sinceramente non ho avuto modo, cioè non gliel’ho spiegato. Ho detto: “è come sono io,” perché loro già... le persone che io ritengo amiche o comunque che ritengo vicino a me comunque capiscono quello che c’è, sì, vedono che sono diverso dagli altri nel modo di comportarmi, nel modo di pensare, ecc. E quindi cioè io dico questa in teoria è la sindrome di Asperger che riunisce tutti questi fattori ecc. p. 344

Nella Bibbia non si sa il giorno o l’ora, però noi abbiamo la speranza [che] non ci saranno più malattie, problemi di lavoro, crisi economici, morte. Un governo nel quale non ci sono mai più quei problemi. Questo paradiso nel mondo. Prima ho visto mia figlia come gli altri ragazzi. È vero che ha un problema di cervello, e nessuno lo può cambiare, è solo Dio che può darle un cervello come tutti gli altri. Quello è il mio futuro, vivere sulla terra senza più problemi, malattie [....] Potrò vedere mia figlia in realtà come tutte le altre e non vivere questa vita cattiva, tra virgolette. 435

p. 345

Ti dirò che col tempo mi dà sempre più fastidio il discorso del personaggio famoso, perché è evidente che la realtà delle persone con la sindrome di Asperger non sia quella eccellenza, ma sia una prospettiva più difficile [....] Se all’inizio se vuoi ho un po’ la consolazione di pensare che quelle persone così famose avessero avuto la sindrome di Asperger, [ma] una conoscenza sempre più profonda di che cosa sia la sindrome di Asperger, conoscendo anche tante persone, tanti ragazzi con la sindrome di Asperger, mi portano proprio a disgustarmi di questa cosa o anzi, essere sempre più infastidita da chi anche ha un orgoglio di essere Asperger. p. 346

I comportamenti ossessivi fra virgolette “normali” per esempio quelli che fumano. La gran parte di quelli che fumano si danno [da fare con] un intero pacchetto di sigarette. Finché ci sono sigeratte nel pacchetto io continuo a fumare però posso accettare che se finisco il pacchetto, però, mi basta. Quindi c’era una forma di autodisciplina che fa parte alla psiche e che in questi ragazzi autistici è particolarmente spostata, particolarmente scoperta. p. 347

Tutti, credo, siamo molto convinti in questa famiglia che vale molto anche per le persone cosidette normali. Sono persone normali magari molto intelligenti paralizzati dell’ansia, del nervosismo, dell’incapacità di decidere. In uno soggetto autistico, oh, si vede molto di più! p. 348

Mi sembra che meriti di avere i soldi necessari dietro per poter fare la ricerca necessaria per aiutare questa popolazione, perché ormai sta diventando una popolazione di persone speciali. In modo da trovare una compatibilità maggiore tra questo mondo e il loro.

C’era l’aspettativa di avere una figlia normale che si comportasse come tutti gli altri. E per questo dico che è un po’ stata la chiave di volta è stato il rispetto. E quindi avere comunque una diagnosi, una conoscenza del problema significa che sta a noi genitori modificare, trovare un contesto giusto, migliore, per il ragazzo, e non martellarlo perché a tutti conti, a tutti i costi entri in quel contesto preconfezionante. p. 351

Io pensavo solo che mi desse quel numero di telefono e mi dicesse solo cose che 436

devo fare. Invece abbiamo iniziato a parlare, mi ha detto che anche lei era separata, che però ha trovato un altro compagno, ha detto che... i problemi un po’ di suo figlio, che adesso ha 18 anni, [nome]. Uh, così siamo rimaste al telefono due ore. (Ridendo). Abbiamo parlato di tutto in due ore. Infatti adesso ha detto che ci... non questa domenica ma la prossima ci incontriamo perché, dico, dai, incontriamoci, ci beviamo un caffè mentre loro sono al [servizio].

Anche un paio di anni fa ci si è rivolta una mamma con una ragazzina, ce l’hanno indirizzata... un pochino... ha conosciuto [figlia], con gli stessi problemi di [figlia], le stesse modalità, molto... ma lei era minorenne ancora. E hanno dovuto proprio allontarla dalla mamma e lei mi chiamava, piangeva e io le dicevo: “Guarda, è dura, però guarda che di esperienze nostre, quelle che poi alla fine vedrai.” E adesso l’ho sentita dopo un po’ e mi ha detto: “Guarda, avevi ragione.” p. 352

Non c’è un gruppo. C’è l’associazione, però non c’è un gruppo. Una telefonata…io sono stata un mese e mezzo ad andare avanti e indietro dall’ospedale, io non ho ricevuto una telefonata. Né da parte dei genitori, neanche degli insegnanti di scuola, qua, eh? Ecco, questo mi ha fatto un po’ dispiacere.

[Figlio] deve andare in una communità per autistici. Perché questo che ci voule per lui. Oppure in una comunità comunque per disabili perché io non sto a dire che loro devono vivere con gli autistici. Loro devono vivere con altre persone della loro età. Possono vivere con qualsiasi tipo di handicap, secondo me. Non hanno bisogno di stare tra loro perché non è che si apprezzino tanto, gli autistici (uno all’altro), proprio non si vedono, ecco, però hanno bisogno di stare in un posto dove ci sono persone della loro età. p. 355

Ah, quello che in Italia è un po’ diverso, nel senso [che] non è su questa carta qua dove si diceva “[figlio] è autistico” che ti dicono “hai diritto a, hai diritto a,” qui ti devi arrangiare da te in Italia. Nel senso che quando sono andata che [filgio] aveva 2 anni in quel centro, io ho scoperto da una mamma che [figlio] poteva avere il diritto ad una pensioncina di 200€ che chiama l’indennità. Non sapevo niente. Quando sono tornata mi sono informata. Quando [figlio] si è ricavato autistico nessuno mi ha detto niente, cioè non c’era, OK, sì ti fanno all’uscita dall’ospedale, mi hanno dato l’esenzione ticket. Della mutua. Ma quando ho avuto questa carta, non ho saputo niente. 5, 6, anni fa quando sono entrata in [servizio], l’associazione, ho visto bambini come [figlio] o anche meno gravi di [figlio] che avevano la pensione diversa, avevano il pass sulla macchina. Ho detto “ma [figlio] no” perché queste cose le sai quando sei in associazione, quando sei tra amiche. Non ti viene, non c’è molta informazione in Italia. Non c’è 437

una carta che dice “ [figlio] è autistico, devi fare questo questo questo questo.”

Avevamo organizzato dei corsi di formazione per gli inseganti delle scuole [....] Ed erano corsi sia teorici che pratici e non stavamo a guardare che fossero solamente di formazione per il TEACCH. Perché secondo noi un’associazione che rapprasentava i genitori non doveva essere settoriale cioè non doveva essere l’assocazione a dire “funziona solo il programma TEACCH.” Perché alcuni genitori per dire con la comunicazione faciltata avevano avuto dei buoni risultati e ci credevano. E allora come assocazione secondo noi dovevamo mettere in atto non solo quello che noi come assocazione ritenevamo giusto, ma sentire un po’ tutte le campane. p. 356

E mettermi in lotta con i professionisti, secondo me non sarebbe mai stata una cosa positiva. Al limite se non ero soddisfatta, piuttosto che dichiararlo, lasciavo perdere e cercavo un’altra cosa.

Quindi quando abbiamo trovato gli insegnanti giusti è stato veramente un buon lavoro, perché io poi ho sempre cercato di collaboare con la scuola. Anzi, se loro mi dicevano “guardi domani,” per dire “meglio che lui esca prima perché l’insegnante di sostegno non c’è,” io me lo portavo a casa. Non insistevo per lasciarlo lì, che poi magari era lasciato in un angolino. Nonostante ne avesse tutti diritti, ma io ho sempre privilegiato il benessere di [figlio] ai diritti che comunque avrebbe avuto però, ecco. p. 358

Le aspettative sono di riuscire, molto ambiziose sono in realtà. Di riuscire a costruirle intorno a un mondo assolutamente rispettoso. Cioè io ho veramente questa aspettativa. E quindi mi inventerò se non riuscirà a seguire il percorso scolastico, mi inventerò una scuola su misura per lei. Le costruirò un’attività lavorativa su misura in modo che possa avere uno stipendo ed essere però anche molto contenta. Sembrano più sogni di una bambina ma io ci credo molto in questo.

438

References

Abel, Emily K., and Margaret K. Nelson, eds. 1990 Circles of Care: Work and Identity in Women’s Lives. SUNY Series on Women and Work. Albany, N.Y: State University of New York Press. Aiginger, K., and T. Leoni 2008 Typologies of Social Models in Europe. WIFO. http://www.socialpolitik.ovgu.de/sozialpolitik_media/papers/Aiginger_Karl_uid5 63_pid502.pdf, accessed January 2, 2013. Ajana, Btihaj 2012 Biometric Citizenship. Citizenship Studies 16(7): 851–870. Alcano, Matteo Carlo 2009 Living and Working in Spite of Antiretroviral Therapies: Strength in Chronicity. Anthropology & Medicine 16(2):119–130. American Psychiatric Association (APA) 2000 Diagnostic and Statistical Manual of Mental Disorders: DSM-IV-TR. Arlington, VA: American Psychiatric Association. 2013 Diagnostic and Statistical Manual of Mental Disorders: DSM-5. Arlington, VA: American Psychiatric Association. Amit-Talai, Vered, and Mark Liechty, eds. 1995 Youth Cultures: A Cross-Cultural Perspective. In Youth Cultures: A Cross- Cultural Perspective Pp. 166–201. Routledge. Anderson, Benedict 2006 Imagined Communities: Reflections on the Origin and Spread of Nationalism. Rev. ed. London ; New York: Verso. Anderson-Fye, Eileen P. 2010 The Role of Subjective Motivation in Girls’ Secondary Schooling: The Case of Avoidance of Abuse in Belize. Harvard Educational Review 80(2):174–203. Arduino, Giuseppe Maurizio, and Lorenza Latoni 2009 Percorsi Assistenziali Nell’autismo E Nei Disturbi Pervasivi Dello Sviluppo: Dalla Diagnosi Precoce Alla Continuità Della Presa in Carico Tra Età Adulta. Regione Piemonte: Agenzia Regionale per i Servizi Sanitari. http://www.aress.piemonte.it/Download/SlideGallery/Torino20090507/arduino_la toni_relazione.pdf. 2010 Epidemiologia E Percorsi Assistenziali Nel Case Dei Disturbi Pervasivi Dello Sviluppo in Età Adulta. Autismo E Disturbi Dello Sviluppo 8: 133–150. Armstrong, Elizabeth M. 2003 Conceiving Risk, Bearing Responsibility: Fetal Alcohol Syndrome & the Diagnosis of Moral Disorder. JHU Press. Árnason, Vilhjálmur 2013 Scientific Citizenship in a Democratic Society. Public Understanding of Science 22(8):927–940. Arnett, Jeffrey Jensen 2000 Emerging Adulthood: A Theory of Development from the Late Teens through the Twenties. American Psychologist 55(5):469. 2004 Emerging Adulthood: The Winding Road from the Late Teensthrough the 439

Twenties. Oxford ; New York: Oxford University Press. Asberg, Cecilia, and Ericka Johnson 2009 Viagra Selfhood: Pharmaceutical Advertising and the Visual Formation of Swedish Masculinity. Health Care Analysis 17:144–157. Asperger, Hans 1944 Die “Aunstisehen Psychopathen” Im Kindesalter. Achiv Fur Psychiatrie Und Nervenkrankheiten 117:76–136. Autism Research Institute 2010a Defeat Autism Now! U.S. Clinicians. http://www.autism.com/pro_danlists_us.asp. 2010b Defeat Autism Now! – A Project of the Autism Research Institute. http://www.autism.com/dan/index.htm. Autismo Italia n.d. Criteri Diagnostici Secondo Il DSM-IV-TR (A.P.A. 2001). http://www.autismoitalia.org/cridiagno.asp. Bach, Marie-Anne 1998 Building the French Muscular Dystrophy Association: The Role of Doctor/Patient Interactions. Social History of Medicine 11(2):233–253. Bagatell, Nancy 2007 Orchestrating Voices: Autism, Identity and the Power of Discourse. Disability & Society 22:413–426. 2010 From Cure to Community: Transforming Notions of Autism. Special Issue. Ethos 38:33-55. Baggott, R., and R. Forster 2008 Health Consumer and Patients’ Organizations in Europe: Towards a Comparative Analysis. Health Expectations 11(1):85–94. Baio, Jon 2012 Prevalence of Autism Spectrum Disorders: Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008. Morbidity and Mortality Weekly Report. Surveillance Summaries. Volume 61, Number 3. Centers for Disease Control and Prevention. http://eric.ed.gov/?id=ED530639, accessed September 4, 2014. Baker, Dana Lee 2006 Neurodiversity, Neurological Disability and the Public Sector: Notes on the Autism Spectrum. Disability & Society 21(1):15–29. 2007 Defining Autism in Canada: Unfolding the Public Aspects of Neurological Disability. The Social Science Journal 44:687–697. Baker, Dana Lee, and Trudy Steuernagel 2009 Comparative Policy Entrepreneurship: The Case of Autism-Related Policy in North America. Journal of Comparative Policy Analysis 11(2):233–248. Baker, Dana Lee, and Shannon Stokes 2007 Brain Politics: Aspects of Administration in the Comparative Issue Definition of Autism-Related Policy. Public Administration Review 67(4):757–767. Barbeau, Elise B., Isabelle Soulières, Michelle Dawson, Thomas A. Zeffiro, and Laurent Mottron 2012 The Level and Nature of Autistic Intelligence III: Inspection Time. 440

http://psycnet.apa.org/psycarticles/2012-28388-001.pdf, accessed June 9, 2013. Baron-Cohen, Simon, Sally Wheelwright, Antony Cox, et al. 2000 Early Identification of Autism by the CHecklist for Autism in Toddlers (CHAT). Journal of the Royal Society of Medicine 93(10):521. Baron-Cohen, Simon, Sally Wheelwright, Richard Skinner, Joanne Martin, and Emma Clubley 2001 The Autism-Spectrum Quotient (AQ): Evidence from Asperger Syndrome/high- Functioning Autism, Malesand Females, Scientists and Mathematicians. Journal of Autism and Developmental Disorders 31(1):5–17. Bates, Donald G 1995 Knowledge and the Scholarly Medical Traditions. Cambridge ; New York: Cambridge University Press. Beaudevin, Claire 2013 Old Diseases and Contemporary Crisis. Inherited Blood Disorders in the Sultanate of Oman. Anthropology & Medicine 20(2):175–189. Beck, Stefan, and Jorg Niewohner 2009 Localising Genetic Testing and Screening in Cyprus and Germany: Contingencies, Continuities, Ordering Effects and Bio-Cultural Intimacy. In Handbook of Genetics and Society: Mapping the New Genomic Era. Paul Atkinson, Peter E. Glasner, and Margaret M. Lock, eds. Pp. 76–93. New York: Routledge. Beckmann, N., and J. Bujra 2010 The “Politics of the Queue”: The Politicization of People Living with HIV/AIDS in Tanzania. Development and Change 41(6):1041–1064. Begeer, Sander, Saloua El Bouk, Wafaa Boussaid, Mark Meerum Terwogt, and Hans M. Koot 2009 Underdiagnosis and Referral Bias of Autism in Ethnic Minorities. Journal of Autism and Developmental Disorders 39(1):142–148. Begeny, John C., and Brian K. Martens 2007 Inclusionary Education in Italy: A Literature Review and Call for More Empirical Research. Remedial and Special Education 28:80–94. Bettelheim, Bruno 1972 Empty Fortress. New York, NY: Free Press. Bharadwaj, Aditya 2008 Biosociality and Biocrossings: Encounters with Assisted Conception and Embryonic Stem Cells in India. In Biosocialities, Genetics and the Social Sciences: Making Biologies and Identities. Sahra Gibbon and Carlos Novas, eds. Pp. 98–116. London, UK: Routledge. Biklen, Douglas, and Richard Attfield 2005 Autism and the Myth of the Person Alone. NYU Press. Bilu, Yoram, and Yehuda C. Goodman 1997 What Does the Soul Say? Metaphysical Uses of Facilitated Communication in the Jewish Ultraorthodox Community. Ethos 25:375–407. Bleuler, Eugen 1950 Dementia Praecox; Or, The Group of Schizophrenias. International Universities Press. 441

Bliss, Catherine 2011 Racial Taxonomy in Genomics. Social Science & Medicine 73(7):1019–1027. Block, Pamela, and Fatima Cavalcante 2012 Autism in Brazil from Adovcacy and Self-Advocacy Perspectives: A Preliminary Research Report. Autism Around the Globe. http://www.autismaroundtheglobe.org/countries/Brazil.asp. Block, Pamela, Eva L. Rodriguez, Marcia C. Milazzo, et al. 2011 Building Pediatric Multiple Sclerosis Community Using a Disability Studies Framework of Empowerment. In Disability and Community. Allison C. Carey and Richard K. Scotch, eds. Pp. 85–112. Research in Social Science and Disability. Bingle: Emerald. Blum, Richard H, and Eva Maria Blum 1965 Health and Healing in Rural Greece; a Study of Three Communities. Stanford, Calif: Stanford University Press. 1970 The Dangerous Hour: The Lore of Crisis and Mystery in Rural Greece. Chatto & Windus. Bodewitz, J.H.W., Henk Buurma, and Gerard H. de Vries 1987 Regulatory Science and the Social Management of Trust in Medicine. In The Social Construction of Technological Systems: New Directions in the Sociology and History of Technology. Wiebe E Bijker, Thomas Parke Hughes, and T. J Pinch, eds. Pp. 243–259. Cambridge, Mass: MIT Press. Bollini, P., M. Reich, and G. Muscettola 1988 Revision of the Italian Psychiatric Reform: North/South Differences and Future Strategies. Social Science & Medicine 27(12):1327–1335. Bonaccorso, Monica M. E 2009 Conceiving Kinship: Assisted Conception, Procreation and Family in Southern Europe. New York: Berghahn Books. Borghese, Massimo 2007 Autismo. Nuovi aspetti diagnostici e terapeutici. Torino: Omega. Borkman, Thomasina 1976 Experiential Knowledge: A New Concept for the Analysis of Self-Help Groups. Social Service Review 50(3):445–456. Boundy, Kathryn 2008 “Are You Sure, Sweetheart, That You Want to Be Well”: An Exploration of the Neurodiversity Movement. Radical Psychology: A Journal of Psychology, Politics, and Radicalism 7. Boutot, E. Amanda, and Diane P. Bryant 2005 Social Integration of Students with Autism in Inclusive Settings. Education and Training in Developmental Disabilities 40(1):14–23. Bracci, Silvia 2003 Sviluppo della neuropsichiatria in Italia ed Europa. Storia delle istituzioni psichiatriche per l’infanzia. In L’Ospedale psichiatrico di Roma. Dal Manicomio Provinciale alla Chiusura. Antonio Iaria, Tommaso Losavio, and Pompeo Martelli, eds. Pp. 145–161. Bari: Dedalo. Braun, Bruce 2007 Biopolitics and the Molecularization of Life. Cultural Geographies 14:6–28. 442

Breemer Ter Stege, C. P. C., and P. Van Heugten 1986 The Changing Structure of Dutch Mental Health Care. Social Science & Medicine 23(3):283–291. Brekke, Ole Andreas, and Thorvald Sirnes 2011 Biosociality, Biocitizenship and the New Regime of Hope and Despair: Interpreting “Portraits of Hope” and the “Mehmet Case.” New Genetics and Society 30(4):347–374. Briggs, Charles L., and Daniel C. Hallin 2007 The Neoliberal Subject and its Contradictions in News Coverage ff Health Issues. Social Text 25(4):43–66. Broderick, Alicia, and Ari Ne’eman 2008 Autism as Metaphor: Narrative and Counter-Narrative. International Journal of Inclusive Education 12:469–476. Bromberger, C. 2006 Towards an Anthropology of the Mediterranean. History and Anthropology 17(2): 91–107. Brown, B. Bradford, and Reed W. Larson 2002 The Kaleidoscope of Adolescence: Experiences of the World’s Youth at the Beginning of the 21st Century. In The World’s Youth: Adolescence in Eight Regions of the Globe Pp. 1–20. Cambridge, UK: Cambridge University Press. Brownlow, Charlotte 2010 Presenting the Self: Negotiating a Label of Autism. Journal of Intellectual and Developmental Disability 35(1):14–21. Brownlow, Charlotte, and O’Dell, Lindsay 2013 Autism as a Form of Biological Citizenship. In Worlds of Autism: Across the Spectrum of Neurological Difference. Joyce Davidson and Michael Orsini, eds. Pp. 97–114. Minneapolis, MN: University of Minnesota Press. Buchman, Daniel Z., Judy Illes, and Peter B. Reiner 2011 The Paradox of Addiction Neuroscience. Neuroethics 4(2):65–77. Bucholtz, Mary 1999 “Why Be Normal?”: Language and Identity Practices in a Community of Nerd Girls. Language in Society 28(2): 203–223. 2001 The Whiteness of Nerds: Superstandard English and Racial Markedness. Journal of Linguistic Anthropology 11(1): 84–100. 2002 Youth and Cultural Practice. Annual Review of Anthropology 31: 525–552. Bucholtz, Mary, and Kira Hall 2006 Language and Identity. In A Companion to Linguistic Anthropology. Alessandro Duranti, ed. Pp. 369–394. Malden, MA: Wiley-Blackwell. Bumiller, Kristin 2008 Quirky Citizens: Autism, Gender and Reimagining Disability. Signs 33:967. 2009 The Geneticization of Autism: From New Reproductive Technologies to the Conception of Genetic Normalcy. Signs 34(4):875–899. 2013 In Worlds of Autism: Across the Spectrum of Neurological Difference. Joyce Davidson and Michael Orsini, eds. University of Minnesota Press. Burbank, Victoria Katherine 1988 Aboriginal Adolescence: Maidenhood in an Australian Community. Adolescents 443

in a Changing World. New Brunswick: Rutgers University Press. Burke, L. 2008 “The Country of My Disease”: Genes and Genealogy in Alzheimer’s Life- Writing. Journal of Literary & Cultural Disability Studies 2(1):63–74. Burri, Regula Valerie 2007 Sociotechnical Anatomy: Technology, Space, and Body in the MRI Unit. In Biomedicine as Culture: Instrumental Practices, Technoscientific Knowledge, and New Modes of Life. 1st edition. Regula Valérie Burri and Joseph Dumit, eds. Pp. 109–121. Routledge. Burti, Lorenzo 2001 Italian Psychiatric Reform 20 plus Years after. Acta Psychiatrica Scandinavica 104:41–46. Burti, Lorenzo, and Paul R. Benson 1996 Psychiatric Reform in Italy: Developments Since 1978. International Journal of Law and Psychiatry 19:373–390. Cambrosio, Alberto, Allan Young, and Margaret Lock 2000 Introduction. In Living and Working with the New Medical Technologies: Intersections of Inquiry. Margaret M Lock, Allan Young, and Alberto Cambrosio, eds. Pp. 1–16. Cambridge Studies in Medical Anthropology, 8. Cambridge, UK: Cambridge University Press. Cameron, R J 1997 Early Intervention for Young Children with Developmental Delay: The Portage Approach. Child: Care, Health and Development 23(1):11–27. Canevaro, Andrea, and Lucia de Anna 2010 The Historical Evolution of School Integration in Italy: Some Witnesses and Considerations. ALTER, European Journal of Disability Research 4:203–216. Canguilhem, Georges 1978 On the Normal and the Pathological. Studies in the History of Modern Science, v. 3. Dordrecht, Holland ; Boston: D. Reidel Pub. Co. Carpenter, L. M 2010 On Remedicalisation: Male Circumcision in the United States and Great Britain. Sociology of Health & Illness 32(4): 613–630. Carson, John 2004 The Science of Merit and the Merit of Science: Mental Order and Social Order in Early 20th Century France and America. In States of Knowledge: The Co- Production of Science and the Social Order. Sheila Jasanoff, ed. Pp. 181–205. New York, NY: Routledge. Carter, Erik W., Lynn G. Sisco, Lissa Brown, Dana Brickham, and Zainab A. Al- Khabbaz 2008 Peer Interactions and Academic Engagement of Youth with Developmental Disabilities in Inclusive Middle and High School Classrooms. Journal Information 113(6). Cascio, M. Ariel 2012 Neurodiversity: Autism Pride Among Mothers of Children with Autism Spectrum Disorders. Intellectual and Developmental Disabilities 50(3):273–283. 2013 Is Asperger’s Syndrome a Transient Mental Illness? Encountering the DSM-5. In 444

Tarragona, Spain. 2014a New Directions in the Social Study of the Autism Spectrum: A Review Essay. Culture, Medicine, and Psychiatry 38(2):306–311. 2014b “This Is the Italian Variant on TEACCH”: Italian Adaptation of a North Carolina Autism Service Model. Paper presented at the Society for Applied Anthropology Annual Meeting, Albuquerque, NM. 2015a Rigid Therapies, Rigid Minds: Italian Professionals’ Perspectives on Autism Interventions. Culture, Medicine and Psychiatry. 2015b Creating Opportunities for Adult Roles for Italians with Autism. Paper to be presented at the Society for Psychological Anthropology Biennial Meeting, Boston, MA. Cassidy, Rebecca 2010 Global Expectations and Local Practices: HIV Support Groups in the Gambia. Aids Care-Psychological and Socio-Medical Aspects of Aids/HIV 22:1598–1605. Castel, Françoise, Robert Castel, and Anne Lovell 1982 The Psychiatric Society. Arthur Goldhammer, tran. European Perspectives. New York: Columbia University Press. Cataldo, Fabian 2008 New Forms of Citizenship and Socio-Political Inclusion: Accessing Antiretroviral Therapy in a Rio de Janeiro Favela. Sociology of Health and Illness 30: 900–912. Centers for Disease Control and Prevention (CDC) 2014 Facts About ASDs. CDC - Facts about Autism Spectrum Disorders - NCBDDD. http://www.cdc.gov/ncbddd/autism/facts.html, accessed May 5, 2014. Chamak, Brigitte 2008 Autism and Social Movements: French Parents’ Associations and International Autistic Individuals’ Organisations. Sociology of Health & Illness 30:76–96. Chamak, Brigitte, B. Bonniau, L. Oudaya, and A. Ehrenberg 2010 The Autism Diagnostic Experiences of French Parents. Autism 15(1):83–97. Chamak, Brigitte, and Beatrice Bonniau 2013 Autism and Social Movements in France: A Comparative Perspective. In Worlds of Autism: Across the Spectrum of Neurological Difference. Joyce Davidson, Michael Orsini, and Majia Holmer Nadesan, eds. University of Minnesota Press. Charles, Nicole 2013 Mobilizing the Self-Governance of Pre-Damaged Bodies: Neoliberal Biological Citizenship and HPV Vaccination Promotion in Canada. Citizenship Studies 17(6- 7):770–784. Chu, Arthur 2014a Your Princess Is in Another Castle: Misogyny, Entitlement, and Nerds. The Daily Beast. http://www.thedailybeast.com/articles/2014/05/27/your-princess-is-in- another-castle-misogyny-entitlement-and-nerds.html, accessed January 29, 2015. 2014b I’m Not “that Creepy Guy from the Internet”: How Gamergate Gave the Geek Community a Bad Name. http://www.salon.com/2014/10/30/that_creepy_guy_from_the_internet_how_gam ergate_shattered_faith_in_the_geek_community/, accessed January 29, 2015. 2015 Nerd Masculinity: “They Won’t Give It Up Without A Fight.” Ravishly. http://www.ravishly.com/2014/12/10/arthur-chu-nerd-masculinity, accessed 445

January 29, 2015. Cimino, Guido, and Giovanni Pietro Lombardo 2004 Sante de Sanctis: Tra Psicologia Generale E Psicologia Applicata. Milano, IT: FrancoAngeli s.r.l. Cola, Mirna 2012 Ragionevolmente Differenti. Una Riflessione Antropologica Sulla Sindrome Di Asperger E Disturbo Dello Spettro Autistico. Bologna, Italy: I Libri di Emil. Cola, Mirna, and Daniella Crocetti 2011 Negotiating Normality: Experiences from Three Italian Patient Support Groups. Kroeber Anthropological Society Papers 99/100(1):214–236. Cole, J. 2004 Fresh Contact in Tamatave, Madagascar: Sex, Money, and Intergenerational Transformation. American Ethnologist 31(4):573–588. Collier, Stephen J., and Aihwa Ong 2005 Global Assemblages, Anthropological Problems. In Global Assemblages: Technology, Politics, and Ethics as Anthropological Problems. Aiwha Ong and Stephen J. Collier, eds. Pp. 3–21. Malden, MA: Blackwell Publishing. Collins, Paul 2004 Not Even Wrong: Adventures in Autism. Fusion. 2005 Né giusto né sbagliato. Avventure nell’autismo. C. Borriello, tran. Milano: Adelphi. Comune di Milano 2012 Avviso Pubblico: Per L’attivazione di interventi anticrisi a sostegno del reddito e delle imprese finalizzati all’inserimento lavorativo a seguito di tirocinio in borsa lavoro di persone in situazione di svantaggio sociale ed economico. Milano: Comune di Milano. http://www.comune.milano.it/dseserver/webcity/garecontratti.nsf/51607b595b240 841c1256c4500569c90/38708b62449be14dc1257aa300366bf4/$FILE/Avviso%2 0Pubblico.PDF, accessed February 5, 2015. Condon, Richard G. 1988 Inuit Youth: Growth and Change in the Canadian Arctic. Adolescents in a Changing World, v. 1. New Brunswick, NJ: Rutgers University Press. Cornoldi, Cesare, Alessandra Terreni, Thomas E. Scruggs, and Margo A. Mastropieri 1998 Teacher Attitudes in Italy after Twenty Years of Inclusion. Remedial and Special Education 19(6): 350–356. Corsaro, W. A 1996 Early Education, Children’s Lives, and the Transition from Home to School in Italy and the United States. International Journal of Comparative Sociology, 37 1(2): 121–139. Corsaro, W. A, and Luisa Molinari 2000 Entering and Observing in Children’s Worlds: Some Methodological Insights. In Research with Children: Perspectives and Practices. Pia Monrad Christensen and Allison James, eds. Pp. 179–200. London: Falmer Press. Corsaro, William A., and Francesca Emiliani 2014 Child Care, Early Education, and Children’s Peer Culture in Italy. In Child Care in Context: Cross-Cultural Perspectives. Michael E. Lamb, Kathleen J. Sternberg, 446

Carl-Philip Hwang, and Anders G. Broberg, eds. Pp. 81–115. Psychology Press. Cosmacini, Giorgio 2011 L’evoluzione Della Sanità Dall’unità d’Italia Al Duemila. Epidemiologia & Prevenzione 35(5-6 Supp. 2):10–13. Crainer, Brandy N.d. Celebrate Austistic Pride Day on June 18th | Sunrise Group. http://www.sunrisegroup.org/celebrate-austistic-pride-day-on-june-18th/, accessed February 15, 2015. Crapanzano, Vincent 1973 The Ḥamadsha: A Study in Moroccan Ethnopsychiatry. Berkeley: University of California Press. Crepet, Paolo 1990 A Transition Period in Psychiatric Care in Italy Ten Years after the Reform. The British Journal of Psychiatry 156(1):27–36. Crepet, Paolo, and Giovanni De Plato 1983 Psychiatry without Asylums: Origins and Prospects in Italy. International Journal of Health Services 13(1):119–129. Crialesi, R., A. Battisti, L. Salvador-Carulla, R. Martínez-Leal, and A. Rodríguez 2007 Deinstitutionalisation and Community Living–outcomes and Costs: Report of a European Study. Country Report: Italy. In Deinstitutionalisation and Community Living–outcomes and Costs: Report of a European Study. Pp. 265–311. Canterbury: Tizard Centre, University of Kent. https://www.kent.ac.uk/tizard/research/DECL_network/documents/DECLOC_Co untry_Reports.pdf#page=267, accessed January 2, 2013. Crosland, Maurice P, ed. 1976 The Emergence of Science in Western Europe. New York: Science History Publications. Crowley-Matoka, Megan, and Margaret M. Lock 2006 Organ Transplantation in a Globalised World. Mortality 11(2):166–181. Cuevas Valenzuela, Hernán, and Isabel Pérez Zamora 2011 The Governance of AIDS in Chile: Power/knowledge, Patient-User Organisation, and the Formation of the Biological Citizen*. International Social Science Journal 62(205-206):377–389. Curnutte, Margaret, and Giuseppe Testa 2012 Consuming Genomes: Scientific and Social Innovation in Direct-to-Consumer Genetic Testing. New Genetics and Society 31(2):159–181. D’Alessio, Simona 2008 “Made in Italy”: Integrazione Scolastica and the New Vision of Inclusive Education. In Policy, Experience and Change: Cross-Cultural Reflections on Inclusive Education Pp. 53–72. New York: Springer. 2011 Disabilities Studies in Italia: Primi Sviluppi. Italian Journal of Disability Studies - Rivista Italiana Di Studi Sulla Disabilità 1:3–9. Daley, Tamara C. 2002 The Need for Cross-Cultural Research on the Pervasive Developmental Disorders. Transcultural Psychiatry 39: 531–550. 2004 From Symptom Recognition to Diagnosis: Children with Autism in Urban India. 447

Social Science & Medicine 58(7):1323–1335. Daley, Tamara C., and Marian D. Sigman 2002 Diagnostic Conceptualization of Autism Among Indian Psychiatrists, Psychologists, and Pediatricians. Journal of Autism and Developmental Disorders 32: 13–23. Daley, Tamara C., and Thomas S. Weisner 2003 “I Speak a Different Dialect”: Teen Explanatory Models of Difference and Disability. Medical Anthropology Quarterly 17(1):25–48. Danforth, Scot, and Srikala Naraian 2007 Use of the Machine Metaphor Within Autism Research. Journal of Developmental and Physical Disabilities 19(3):273–290. Davidson, Joyce 2008a Autistic Culture Online: Virtual Communication and Cultural Expression on the Spectrum. Social & Cultural Geography 9(7): 791–806. 2008b “More Labels Than a Jam Jar”: The Gendered Dynamics of Diagnosis for Girls and Women with Autism. In Contesting Illness: Processes and Practices. Pamela Moss and Katherine Teghtsoonian, eds. Pp. 239–258. Toronto: University of Toronto Press. Davidson, Joyce, and Victoria L. Henderson 2010 “Coming out” on the Spectrum: Autism, Identity and Disclosure. Social & Cultural Geography 11:155–170. Davidson, Joyce, and Michael Orsini, eds. 2013 Worlds of Autism: Across the Spectrum of Neurological Difference. University of Minnesota Press. Davis, John, Nick Watson, and Sarah Cunningham-Burley 2000 Learning the Lives of Disabled Children: Developing a Reflexive Approach. In Research with Children: Perspectives and Practices. Pia Monrad Christensen and Allison James, eds. Pp. 201–224. London: Falmer Press. Davis, Susan Schaefer 1999 Adolescence in a Moroccan Town. Rutgers University Press. Davis-Floyd, Robbie, and Carolyn F. Sargent 1997 Childbirth and Authoritative Knowledge. Childbirth and Authoritative Knowledge. http://content.ub.hu- berlin.de/monographs/toc/ethnologie/BV011542334.pdf, accessed December 29, 2014. Dawson, Michelle, Isabelle Soulières, Morton Ann Gernsbacher, and Laurent Mottron 2007 The Level and Nature of Autistic Intelligence. Psychological Science 18(8):657– 662. Devereux, George 1980 Basic Problems of Ethnopsychiatry. Chicago: University of Chicago Press. De Wolfe, Juliette 2014 Parents of Children with Autism: An Ethnography. Palgrave Macmillan. De Sanctis, Sante 1925 Neuropsichiatria Infantile. Roma: Stock. Di Furia, Paola, and Giusi Montanari 2003 In service dirigenti: indicazioni per l’organizzazione dei servizi. In Autismo: 448

modelli applicativi nei servizi. Realizzazione di un programma psicoeducativo mediante la formazione in service. Tina Lomascolo, Ascanio G. Vaccaro, and Susanna Villa, eds. Pp. 193–214. Vannini. Dinishak, Janette, and Nameera Akhtar 2013 A Critical Examination of Mindblindness as a Metaphor for Autism. Child Development Perspectives 7(2):110–114. Dodier, Nicolas 1998 Clinical Practice and Procedures in Occupational Medicine: A Study of the Framing of Individuals. In Differences in Medicine: Unraveling Practices, Techniques, and Bodies. Marc Berg and Annemarie Mol, eds. Pp. 53–85. Body, Commodity, Text. Durham: Duke University Press. Donnelly, Michael 1992 The Politics of Mental Health in Italy. London ; New York: Routledge. Ducournau, Pascal, Pierre-Antoine Gourraud, Emmanuelle Rial-Sebbag, Anne Cambon- Thomsen, and Alexandre Bulle 2013 Direct-to-Consumer Health Genetic Testing Services: What Commercial Strategies for Which Socio-Ethical Issues? Health Sociology Review 22(1):75– 87. Dufault, Renee, Walter J. Lukiw, Raquel Crider, et al. 2012 A Macroepigenetic Approach to Identify Factors Responsible for the Autism Epidemic in the United States. Clinical Epigenetics 4(1):6. Dumit, Joseph 2000 When Explanations Rest: “Good-Enough” Brain Science and the New Socio- Meidcal Disorders. In Living and Working with the New Medical Technologies: Intersections of Inquiry. Margaret M Lock, Allan Young, and Alberto Cambrosio, eds. Pp. 209–232. Cambridge Studies in Medical Anthropology, 8. Cambridge, UK: Cambridge University Press. 2006 Illnesses You Have to Fight to Get: Facts as Forces in Uncertain, Emergent Illnesses. Social Science & Medicine (1982) 62(3):577–590. Ecks, D. S 2005 Pharmaceutical Citizenship: Antidepressant Marketing and the Promise of Demarginalization in India. Anthropology & Medicine 12(3): 239–254. Edgerton, Robert B 1971 The Cloak of Competence; Stigma in the Lives of the Mentally Retarded. Berkeley: University of California Press. , ed. 1984 Lives in Process: Mildly Retarded Adults in a Large City. Monographs of the American Association on Mental Deficiency, no. 6. Washington, DC: American Association on Mental Deficiency. Eglash, Ron 2002 Race, Sex, and Nerds: From Black Geeks to Asian American Hipsters. Social Text 20(2 71):49–64. El-Haj, Nadia Abu 2007 The Genetic Reinscription of Race. Annu. Rev. Anthropol. 36:283–300. Emerson, Robert M., Rachel I. Fretz, and Linda L. Shaw 1995 Writing Ethnographic Fieldnotes. Chicago, IL: University of Chicago Press. 449

Erikson, Erik H. 1968 The Life Cycle: Epigenesis of Identity. In Identity: Youth and Crisis Pp. 91–141. New York, NY: W.W. Norton & Company, Inc. 1994 Identity: Youth and Crisis. W. W. Norton & Company. Erikson, S. L 2003 Post-Diagnostic Abortion in Germany: Reproduction Gone Awry, Again? Social Science & Medicine 56(9):1987–2001. Ervas, Fulvio 2012 Se ti abbraccio non aver paura. Marcos y Marcos. Erwin, Deborah Oates 1987 The Militarization of Cancer Treatment in American Society. In Encounters with Biomedicine: Case Studies in Medical Anthropology. Hans A. Baer, ed. Pp. 201– 227. New York, NY: Gordon and Breach Science Publishers. Estroff, Sue 1993 Identity, Disability, and Schizophrenia: The Problem of Chronicity. In Knowledge, Power, and Practice: The Anthropology of Medicine and Everyday Life. Shirley Lindenbaum and Margaret M. Lock, eds. Pp. 247–286. Berkeley, CA: University of California Press. Eyal, Gil, Des Fitzgerald, Eva Gillis-Buck, et al. 2014 New Modes of Understanding and Acting on Human Difference in Autism Research, Advocacy and Care: Introduction to a Special Issue of BioSocieties. BioSocieties 9(3):233–240. Eyal, Gil, Brendan Hart, Emine Onculer, Neta Oren, and Natasha Rossi 2010 The Autism Matrix. Cambridge, UK: Polity Press. Eyre, S. L., V. Hoffman, and S. G. Millstein 1998 The Gamesmanship of Sex: A Model Based on African American Adolescent Accounts. Medical Anthropology Quarterly 12(4):467–489. Fabrega, Jr., Horacio 1993 Biomedical Psychiatry as an Object for Critical Medical Anthropology. In Knowledge, Power, and Practice: The Anthropology of Medicine and Everyday Life. Shirley Lindenbaum and Margaret M. Lock, eds. Pp. 166–188. Berkeley, CA: University of California Press. Farci, Giuseppe 2005 Per Un’educazione Special Dell’alunno Con Disturbi Pervasive Dello Sviluppo: Riflessioni Relative Al Contesto Scolastico Italiano. Autismo E Disturbi Dello Sviluppo 3:9–22. Feighner, J. P. 1989 The Advent of the Feighner Criteria: A Citation Classic Commentary on “Diagnostic Criteria for Use in Psychiatric Research” by Feighner JP, Robins E, Guze SB, Woodruff RA, Winokur G, and Munoz R". Current Contents: Social and Behavioral Sciences 43:14. Fein, Elizabeth 2011 Innocent Machines: Asperger’s Syndrome and the Neurostructural Self. In Sociological Reflections on the Neurosciences. Martyn Pickersgill and Ira Van Keulen, eds. Pp. 27–49. Advances in Medical Sociology. Bingley, United Kingdom: Emerald Group Publishing Limited. 450

Feinstein, Adam 2010 A History of Autism: Conversations with the Pioneers. Malden, MA: Wiley- Blackwell. Felt, Ulrike, and Ruth Müller 2011 Tentative (id) Entities: On Technopolitical Cultures and the Experiencing of Genetic Testing. BioSocieties 6(3):342–363. Fenton, Andrew, and Tim Krahn 2007 Autism, Neurodiversity, and Equality Beyond the “Normal”: A Special Theme Issue. Journal of Ethics in Mental Health 2:1–6. Fiorani, Matteo 2011 Giovanni Bollea, 1913-2011: Per Una Storia Della Neuropsichiatria Infantile in Italia. Medicina & Storia 11(21/22):251–276. Fitzgerald, Des 2014 The Trouble with Brain Imaging: Hope, Uncertainty and Ambivalence in the Neuroscience of Autism. BioSocieties 9(3):241–261. Fitzgerald, Ruth 2008 Biological Citizenship at the Periphery: Parenting Children with Genetic Disorders. New Genetics and Society 27(3):251–266. Fombonne, Eric 2003 Epidemiological Surveys of Autism and Other Pervasive Developmental Disorders: An Update. Journal of Autism and Developmental Disorders 33:365– 382. 2005 The Changing Epidemiology of Autism. Journal of Applied Research in Intellectual Disabilities 18(4):281–294. Fondazione Censis 2012 La Dimensione Nascosta Delle Disabilità, Terzo Rapporto Di Ricerca: La Domanda Di Cura E Di Assistenza Delle Persone Affette Da Sclerosi Multipla, Da Disturbi Dello Spettro Autistico E Delle Loro Famiglie. Rome, Italy. Fong, Vanessa 2006 Only Hope: Coming of Age Under China’s One-Child Policy. Stanford University Press. Foucault, Michel 1988 Technologies of the Self: A Seminar with Michel Foucault. Luther H. Martin, Huck Gutman, and Patrick H. Hutton, eds. Amherst: University of Massachusetts Press. 1990 The History of Sexuality, Volume 1: An Introduction. New York: Vintage Books. 1994 The Birth of the Clinic: An Archaeology of Medical Perception. New York: Vintage Books. 2006 History of Madness. London ; New York: Routledge. Fraser, Suzanne 2010 Hepatitis C and the Limits of Medicalisation and Biological Citizenship for People Who Inject Drugs. Addiction Research & Theory 18(5):544–556. Frazier, Thomas W, Stelios Georgiades, Somer L Bishop, and Antonio Y Hardan 2014 Behavioral and Cognitive Characteristics of Females and Males with Autism in the Simons Simplex Collection. Journal of the American Academy of Child and Adolescent Psychiatry 53(3):329–340.e1–3. 451

Frazier, Thomas W., Eric A. Youngstrom, Leslie Speer, et al. 2012 Validation of Proposed DSM-5 Criteria for Autism Spectrum Disorder. Journal of the American Academy of Child & Adolescent Psychiatry 51(1):28–40. Freeman, Derek 1983 Margaret Mead and Samoa: The Making and Unmaking of an Anthropological Myth. Harvard University Press. Friedner, Michele 2010 Biopower, Biosociality, and Community Formation: How Biopower Is Constitutive of the Deaf Community. Sign Language Studies 10(3):336–347. Friend, John M. 2014 The Biopolitics of Policy-Making: Medical Activism in the Century of the Brain. New Political Science 36(1):32–51. The Feuerstein Institute 2014 ICELP.info. ICELP.info. ICELP.info. Fullwiley, Duana 2010 Revaluating Genetic Causation: Biology, Economy, and Kinship in Dakar, Senegal. American Ethnologist 37(4):638–661. Fussell, Elizabeth, and Margaret E. Greene 2002 Demographic Trends Affecting Youth Around the World. In The World’s Youth: Adolescence in Eight Regions of the Globe. Bradford B. Brown, Reed W. Larson, and T. S. Saraswathi, eds. Pp. 21–60. Cambridge, UK: Cambridge University Press. Gaines, Atwood D. 1982 Cultural Definitions, Behavior and the Person in American Psychiatry. In Cultural Conceptions of Mental Health and Therapy. Anthony Marsella and Geoffrey White, eds. Pp. 167–192. Dordrecht, the Netherlands: D. Reidel Publishing Company. 1991 Cultural Constructivism: Sickness Histories and the Understanding of Ethnomedicines beyond Critical Medical Anthropologies. In Anthropologies of Medicine: A Colloquium on West European and North American Perspectives. Wiesbaden, Germany: Vieweg Und Sohn Verlag. B. Pleiderer and G. Bibeau, eds. Pp. 221–258. 1992a Ethnopsychiatry: The Cultural Construction of Psychiatries. In Ethnopsychiatry: The Cultural Construction of Professional and Folk Psychiatries. Atwood D. Gaines, ed. Pp. 3–49. Albany: State University of New York Press. , ed. 1992b Medical/Psychiatric Knowledge in France and the United States. Culture and Sickness in History and Biology. In Ethnopsychiatry: The Cultural Construction of Professional and Folk Psychiatries Pp. 171–201. SUNY Series in Medical Anthropology. Albany, N.Y: State University of New York Press. 2005 Race: Local Biology and Culture in Mind. In A Companion to Psychological Anthropology. Conerly Casey and Robert B Edgerton, eds. Pp. 274–297. Gaines, Atwood D., and Robbie Davis-Floyd 2004 Biomedicine. In Encyclopedia of Medical Anthropology. Melvin Ember and Carol Ember, eds. Pp. 95–109. Dordrecht, the Netherlands: Kluwer Academic Publishers. 452

Gaines, Atwood D., and Paul Farmer 1986 Visible Saints: Social Cynosures and Dysphoria in the Mediterranean Tradition. Culture, Medicine, and Psychiatry 10:295–330. Galt, Anthony H 1974 Rethinking Patron-Client Relationships: The Real System and the Official System in Southern Italy. Anthropological Quarterly:182–202. Garfield, E. 1989 Essays of an Information Scientist: Creativity, Delayed Recognition, and Other Essays. Current Contents 12:3–10. Geertz, Clifford 2000 “From the Native”s Point of View’: On the Nature of Anthropological Understanding. In Local Knowledge: Further Essays in Interpretive Anthropology Pp. 55–70. New York: Basic Books. Ghaziuddin, Mohammad, Neera Ghaziuddin, and John Greden 2002 Depression in Persons with Autism: Implications for Research and Clinical Care. Journal of Autism and Developmental Disorders 32(4):299–306. Gibbon, Sahra 2007 Breast Cancer Genes and the Gendering of Knowledge: Science and Citizenship in the Cultural Context of the “New” Genetics. Basingstoke, UK: Palgrave Macmillan. 2008 Charity, Breast Cancer Activism and the Iconic Figure of the BRCA Carrier. In Biosocialities, Genetics and the Social Sciences: Making Biologies and Identities. Sahra Gibbon and Carlos Novas, eds. Pp. 19–37. London, UK: Routledge. Gifford, Sandra M 1986 The Meaning of Lumps: A Case Study of He Ambiguities of Risk. In Anthropology and Epidemiology: Interdisciplinary Approaches to the Study of Health and Disease. Craig R Janes, Ron Stall, and Sandra M Gifford, eds. Pp. 213–246. Culture, Illness, and Healing. Dordrecht ; Boston : Hingham, MA, U.S.A: Reidel ; Sold and distributed in the U.S.A. and Canada by Kluwer Academic Publishers. Gillis-Buck, Eva M., and Sarah S. Richardson 2014 Autism as a Biomedical Platform for Sex Differences Research. BioSocieties 9(3):262–283. Glannon, Walter 2007 Neurodiversity: A Neurodiversity Theme Article. Journal of Ethics in Mental Health 2. Goldade, Kathryn 2009 “Health Is Hard Here” or “Health for All”? Medical Anthropology Quarterly 23(4):483–503. Good, Byron J. 1977 The Heart of What’s the Matter The Semantics of Illness in Iran. Culture, Medicine and Psychiatry 1(1):25–58. 1994 Medicine, Rationality, and Experience: An Anthropological Perspective. Cambridge, UK: Cambridge University Press. Good, Byron J., and Mary-Jo DelVecchio Good 1982 Toward a Meaning-Centered Analysis of Popular Illness Categories: Fright Illness 453

and Heart Distress in Iran. In Cultural Conceptions of Mental Health and Therapy. Anthony J. Marsella and Geoffrey M. White, eds. Pp. 141–166. Dordrecht, the Netherlands: D. Reidel. 1985 The Interpretation of Iranian Depressive Ilness and Dysphoric Affect. In Culture and Depression: Studies in the Anthropology and Cross-Cultural Psychiatry of Affect and Disorder. Arthur Kleinman and Byron J. Good, eds. Pp. 369–428. Berkeley, CA: University of California Press. Gordon, Deborah 1990 Embodying Illness, Embodying Cancer. Culture, Medicine and Psychiatry 14(2):275–297. Gordon, Deborah, and Eugenio Paci 1997 Disclosure Practices and Cultural Narratives: Understanding Concealment and Silence around Cancer in Tuscany, Italy. Social Science & Medicine 44(10):1433–1452. Gray, Carol A., and Joy D. Garand 1993 Social Stories: Improving Responses of Students with Autism with Accurate Social Information. Focus on Autism and Other Developmental Disabilities 8(1):1–10. Greenhough, Beth 2011 Citizenship, Care and Companionship: Approaching Geographies of Health and Bioscience. Progress in Human Geography 35(2):153–171. Greenspan Floortime Approach 2014 Greenspan Floortime Approach for Children with Developmental Delays. www.stanleygreenspan.com. Grinker, Roy Richard 2007 Unstrange Minds: Remapping the World of Autism. New York, NY: Basic Books. Grinker, Roy Richard, Nola Chambers, Nono Njongwe, et al. 2012 “Communities” in Community Engagement: Lessons Learned from Autism Research in South Korea and South Africa. Autism Research 5(3):201–210. Grinker, Roy Richard, and Kyungjin Cho 2013 Border Children: Interpreting Autism Spectrum Disorder in South Korea. Ethos 41(1):46–74. Groleau, Danielle, Allan Young, and Laurence J. Kirmayer 2006 The McGill Illness Narrative Interview (MINI): An Interview Schedule to Elicit Meanings and Modes of Reasoning Related to Illness Experience. Transcultural Psychiatry 43(4):671–691. Gruppo Asperger ONLUS 2013 La sindrome di Asperger. Gruppo Asperger. http://www.asperger.it/?q=asperger_syndrome, accessed June 8, 2013. Guell, Cornelia 2011 Candi(e)d Action: Biosocialities of Turkish Berliners Living with Diabetes. Medical Anthropology Quarterly 25:377–394. Hacking, Ian 1995 The Looping Effects of Human Kinds. In Causal Cognition: A Multidisciplinary Debate. Dan Sperber, David Premack, and Ann J. Premack, eds. Pp. 351–394. 454

Oxford, UK: Clarendon Press. 2006a Genetics, Biosocial Groups & the Future of Identity. Daedalus 135(4): 81–95. 2006b Making Up People. London Review of Books, August 17:23–26. 2007 Kinds of People: Moving Targets. In Proceedings of the British Academy Pp. 285–318. Oxford, UK: Oxford University Press. 2009a How We Have Been Learning to Talk About Autism: A Role for Stories. Metaphilosophy 40(3-4):499–516. 2009b Autistic Autobiography. Philosophical Transactions of the Royal Society B: Biological Sciences 364(1522):1467–1473. 2010 Autism Fiction: A Mirror of an Internet Decade? University of Toronto Quarterly 79(2):632–655. Haldane, Hillary, and David Crawford 2010 What Lula Lacks: Grappling with the Discourse of Autism at Home and in the Field (Respond to This Article at Http://www. Therai. Org. Uk/at/debate). Anthropology Today 26(3):24–26. Hall, G. Stanley 1904 Adolescence; Its Psychology and Its Relations to Physiology, Anthropology, Sociology, Sex, Crime, Religion and Education. New York: D. Appleton and Company. Hallowell, A. Irving 1961 Ojibwaw World View and Disease. In Men’s Image in Medicine and Anthropology. Iago Galdston, ed. Pp. 258–315. New York, NY: International Universities Press, Inc. 2010 Culture and Experience. In Psychological Anthropology: A Reader on Self in Culture Pp. 30–50. Malden, MA: Wiley-Blackwell. Hart, Brendan 2014 Autism Parents & Neurodiversity: Radical Translation, Joint Embodiment and the Prosthetic Environment. BioSocieties 9(3):284–303. Heath, D. 1998 Locating Genetic Knowledge: Picturing Marfan Syndrome and Its Traveling Constituencies. Science, Technology & Human Values 23(1):71–97. Heath, Deborah, Rayna Rapp, and Karen-Sue Taussig 2004 Genetic Citizenship. In A Companion to the Anthropology of Politics. David Nugent and Joan Vincent, eds. Pp. 152–167. Blackwell Companions to Anthropology, 2. Malden, MA: Blackwell Pub. Hebdige, Dick 1991 Subculture: The Meaning of Style. New Accents. London ; New York: Routledge. Hedgecoe, Adam 2001 Schizophrenia and the Narrative of Enlightened Geneticization. Social Studies of Science 31(6):875–911. Heilker, Paul 2012 Autism, Rhetoric, and Whiteness. Disability Studies Quarterly 32(4). http://dsq- sds.org/article/view/1756, accessed January 29, 2015. Hendriks, Ruud 2012 Autistic Company. Rev. and updated English ed. At the interface/Probing the Boundaries, v. 81. Amsterdam ; New York: Rodopi. 455

Henrich, Joseph, Steven J. Heine, and Ara Norenzayan 2010 The Weirdest People in the World? Behavioral and Brain Sciences 33:61–135. Henry, Jules 1971 Pathways to Madness. New York, NY: Random House. Herzfeld, Michael 1984 The Horns of the Mediterraneanist Dilemma. American Ethnologist 11:439–454. 2005 Cultural Intimacy: Social Poetics In The Nation-State. Routledge. Hirschauer, Stefan 1998 Performing Sexes and Genders in Medical Practices. In Differences in Medicine: Unraveling Practices, Techniques, and Bodies. Marc Berg and Annemarie Mol, eds. Pp. 13–27. Body, Commodity, Text. Durham: Duke University Press. Hollos, Marida 1989 Becoming Nigerian in Ijo Society. Adolescents in a Changing World. New Brunswick, NJ: Rutgers University Press. Holmes, Lowell D. 1988 Quest for the Real Samoa: The Mead/Freeman Controversy and Beyond. Greenwood Publishing Group. Howard, Brooke, Ellen Cohn, and Gael I. Orsmond 2006 Understanding and Negotiating Friendships Perspectives from an Adolescent with Asperger Syndrome. Autism 10(6):619–627. Huff, Toby E 2003 The Rise of Early Modern Science: Islam, China, and the West. 2nd ed. Cambridge, UK ; New York: Cambridge University Press. Hughes, Bill 2009 Disability Activisms: Social Model Stalwarts and Biological Citizens. Disability & Society 24(6):677–688. Hughes, Charles 1968 Medical Care: Ethnomedicine. In International Encyclopedia of the Social Sciences. David L. Sills, ed. Pp. 87–93. New York: Macmillan. 1996 Ethnopsychiatry. In Medical Anthropology: Contemporary Theory and Method. Rev. ed. Carolyn Fishel Sargent and Thomas M Johnson, eds. Pp. 131–150. Westport, Conn: Praeger. Humphrey, Neil, and Sarah Lewis 2008 “Make Me Normal”: The Views and Experiences of Pupils on the Autistic Spectrum in Mainstream Secondary Schools. Autism 12:23–46. Humphrey, Neil, and Wendy Symes 2011 Peer Interaction Patterns among Adolescents with Autistic Spectrum Disorders (ASDs) in Mainstream School Settings. Autism 15:397–419. Huyard, Caroline 2009 Who Rules Rare Disease Associations? A Framework to Understand Their Action. Sociology of Health & Illness 31(7):979–993. Hwang, Se Kwang, and Helen Charnley 2010 Making the Familiar Strange and Making the Strange Familiar: Understanding Korean Children’s Experiences of Living with an Autistic Sibling. Disability & Society 25(5):579–592. Hyman, Mia 456

2009 Standing at Sinai with Autism: A Young Man’s Bar Mitzvah Journey. Journal of Positive Behavior Interventions 11:186–192. Institutes for the Achievement of Human Potential 2014 Autism Overview. iahp.org/autism/. Italian National Statistical Institute (ISTAT) 2013 Italy in Figures. Roma, Italy. http://www.istat.it/en/files/2011/06/Italy-in-figures- 2013.pdf. 2014 L’integrazione degli alunni con disabilità nelle scuole primarie e secondarie di primo grado statali e non statali. ISTAT. http://www.istat.it/it/archivio/143466, accessed January 18, 2015. Jack, Jordynn 2014 Autism and Gender: From Refrigerator Mothers to Computer Geeks. University of Illinois Press. Jackson, Luke 2002 Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence. Jessica Kingsley Publishers. Jasanoff, Sheila 2004 The Idiom of Co-Production. In States of Knowledge: The Co-Production of Science and the Social Order. Sheila Jasanoff, ed. Pp. 1–12. New York, NY: Routledge. Jenkins, Janis Hunter, and Robert J. Barrett, eds. 2004 Schizophrenia, Culture, and Subjectivity: The Edge of Experience. Cambridge University Press. Johnson, Andi 2013 The Athlete as Model Organism: The Everyday Practice of the Science of Human Performance. Social Studies of Science 43(6):878–904. Jones, J. L. 2012 Factors Associated With Self-Concept: Adolescents With Intellectual and Development Disabilities Share Their Perspectives. Intellectual and Developmental Disabilities 50(1):31–40. Jones, K., and A. Poletti 1986 The’Italian Experience’reconsidered. The British Journal of Psychiatry 148(2):144–150. Jordan, Brigitte 1993 Birth in Four Cultures: A Crosscultural Investigation Ofchildbirth in Yucatan, Holland, Sweden, and the United States. 4th ed. Prospect Heights, Ill: Waveland Press. Kalofonos, Ippolytos Andreas 2010 “All I Eat Is ARVs.” Medical Anthropology Quarterly 24(3):363–380. Kampf, Antje 2010 “The Risk of Age”? Early Detection Test, Prostate Cancer and the Practices of Self. Journal of Aging Studies 24:325–334. Kang-Yi, Christina D., Roy R. Grinker, and David S. Mandell 2013 Korean Culture and Autism Spectrum Disorders. Journal of Autism and Developmental Disorders 43(3):503–520. Kanner, Leo 457

1943 Autistic Disturbances of Affective Contact. Nervous Child 2:217–50. Kapp, Steven K, Kristen Gillespie-Lynch, Lauren E Sherman, and Ted Hutman 2012 Deficit, Difference, or Both? Autism and Neurodiversity. Developmental Psychology. http://www.ncbi.nlm.nih.gov/pubmed/22545843, accessed July 29, 2012. Kaufman, Barry Neil, and Raun Kaufman 1995 Son Rise: The Miracle Continues. Tiburon, Calif.: HJ Kramer. Kaufman, Sharon R. 2010 Regarding the Rise in Autism: Vaccine Safety Doubt, Conditions of Inquiry, and the Shape of Freedom. Ethos 38(1):8–32. Kay, Lily E 1993 The Molecular Vision of Life: Caltech, the Rockefeller Foundation, and the Rise of the New Biology. Monographs on the History and Philosophy of Biology. New York: Oxford University Press. Keating, Peter 2003 Biomedical Platforms: Realigning the Normal and the Pathological in Late- Twentieth-Century Medicine. Inside Technology. Cambridge, Mass: MIT Press. Keating, Peter, and Alberto Cambrosio 2000 Diagnosing Leukemias and Lymphomas. In Living and Working with the New Medical Technologies: Intersections of Inquiry. Margaret M Lock, Allan Young, and Alberto Cambrosio, eds. Pp. 103–134. Cambridge Studies in Medical Anthropology, 8. Cambridge, UK: Cambridge University Press. Keller, Evelyn Fox 2000 The Century of the Gene. Cambridge, Mass: Harvard University Press. Kendall, Lori 2000 “Oh no! I’m a nerd!” Hegemonic Masculinity on an Online Forum. Gender & Society 14(2):256–274. 2011 “White and Nerdy”: Computers, Race, and the Nerd Stereotype. The Journal of Popular Culture 44(3):505–524. Kendell, R. E., J. E. Cooper, A. J. Gourlay, et al. 1971 Diagnostic Criteria of American and British Psychiatrists. Archives of General Psychiatry 25(2):123–130. Kennard, Edward 1959 Major Patterns of the Mental Hospital - U.S.A. In Culture and Mental Health. Marvin Kaufmann Opler, ed. Pp. 391–409. New York, NY: MacMillan. Kim, Taewoo, Charlotte Haney, and Janis Faye Hutchinson 2012 Exposure and Exclusion: Disenfranchised Biological Citizenship among the First- Generation Korean Americans. Culture, Medicine, and Psychiatry 36(4): 621– 639. Kinsella, Sharon 1995 Cuties in Japan. In Women, Media, and Consumption in Japan. Lise Skov and Brian Moeran, eds. Pp. 220–254. University of Hawaii Press. Kirmayer, L. J 1988 Mind and Body as Metaphors: Hidden Values in Biomedicine. In Biomedicine Examined. Margaret Lock and Deborah Gordon, eds. Pp. 57–93. Dordrecht, the Netherlands: Kluwer Academic Publishers. 458

2006 Beyond the “new Cross-Cultural Psychiatry”: Cultural Biology, Discursive Psychology and the Ironies of Globalization. Transcultural Psychiatry 43(1):126– 144. Kleinman, Arthur 1980 Patients and Healers in the Context of Culture: An Exploration of the Borderland between Anthropology, Medicine, and Psychiatry. Berkeley, CA: University of California Press. 1982 Neurasthenia and Depression: A Study of Somatization and Culture in China. Culture, Medicine and Psychiatry 6:117–190. 1987 Anthropology and Psychiatry: The Role of Culture in Cross-Cultural Research on Illness. British Journal of Psychiatry 151:447–454. 1988 Rethinking Psychiatry: From Cultural Category to Personal Experience. New York : London: Free Press ; Collier Macmillan. Kleinman, Arthur, Leon Eisenberg, and Byron Good 1978 Culture, Illness, and Care: Clinical Lessons from Anthropologic and Cross- Cultural Research. Annals of Internal Medicine 88(2):251–258. Kleinman, Arthur, and Byron J. Good 1985a Introduction: Culture and Depression. In Culture and Depression: Studies in the Anthropology and Cross-Cultural Psychiatry of Affect and Disorder. Arthur Kleinman and Byron J. Good, eds. Pp. 1–33. Berkeley, CA: University of California Press. , eds. 1985b Culture and Depression: Studies in the Anthropology and Cross-Cultural Psychiatry of Affect and Disorder. Berkeley, CA: University of California Press. Kleinman, Arthur, and Joan Kleinman 1985 Somatization: The Interconnections in Chinese Society among Culture, Depressive Experiences, and the Meanings of Pain. In Culture and Depression: Studies in the Anthropology and Cross-Cultural Psychiatry of Affect and Disorder. Arthur Kleinman and Byron J. Good, eds. Pp. 429–490. Berkeley, CA: University of California Press. Kleinman, Arthur M. 1977 Depression, Somatization and the “new Cross-Cultural Psychiatry.” Social Science & Medicine 11(1):3–10. Koegel, Lynn Kern 2011 Pivotal Response Treatment®: Using Motivation as a Pivotal Response. Behavior Management Student Organization. Koller, Rebecca 2000 Sexuality and Adolescents with Autism. Sexuality and Disability 18:125–135. Korbin, Jill E., and Eileen P. Anderson-Fye 2011 Adolescence Matters: Practice-and Policy-Relevant Research and Engagement in Psychological Anthropology. Ethos 39(4):415–425. Kremer-Sadlik, Tamar 2004 How Children with Autism and Asperger Syndrome Respond to Questions: A “naturalistic”theory of Mind Task. Discourse Studies 6(2):185–206. Krige, John 2006 American Hegemony and the Postwar Reconstruction of Science in Europe. 459

Transformations. Cambridge, Mass: MIT Press. Kurtz, Hilda, Amy Trauger, and Catarina Passidomo 2013 The Contested Terrain of Biological Citizenship in the Seizure of Raw Milk in Athens, Georgia. Geoforum 48:136–144. Lappé, Martine D. 2014 Taking Care: Anticipation, Extraction and the Politics of Temporality in Autism Science. BioSocieties 9(3). Latour, Bruno 1993 We Have Never Been Modern. Cambridge, MA: Harvard University Press. Lave, J., P. Duguid, N. Fernandez, and E. Axel 1992 Coming of Age in Birmingham: Cultural Studies and Conceptions of Subjectivity. Annual Review of Anthropology 21:257–282. Lave, Jean, and Etienne Wenger 1991 Situated Learning: Legitimate Peripheral Participation. Cambridge University Press. Lebra, William P, ed. 1976 Culture-Bound Syndromes, Ethnopsychiatry, and Alternate Therapies. Mental Health Research in Asia and the Pacific, v. 4. Honolulu: University Press of Hawaii. LeCompte, Margaret Diane, and Jean J. Schensul 1999 Analysis from the Top Down: Applying Codes Deductively. In Analyzing and Interpreting Ethnographic Data (Ethnographer’s Toolkit, Volume 5) Pp. 45–66. Lanham, MD: Rowman & Littlefield Publishers, Inc. Lee, Sandra Soo-Jin, and LaVera Crawley 2009 Research 2.0: Social Networking and Direct-to-Consumer (DTC) Genomics. The American Journal of Bioethics 9(6-7):35–44. Leiter, Russell Graydon, and Stanley David Porteus 1936 The Leiter International Performance Scale. University of Hawaii Bulletin xv(7): 1- 42. Leonardi, Matilde 2008 Libro bianco sull’invalidità civile in Italia. Uno studio nelle regioni del Nord e del Centro. FrancoAngeli. Leone, Barbara 2010a Riforma Gelmini Della Scuola: I Nuovi Licei. Studenti.it. http://www.studenti.it/superiori/scuola/nuovi_licei_riforma_gelmini.php, accessed January 15, 2015. 2010b Riforma Gelmini Della Scuola: I Nuovi Istituti Tecnici. Studenti.it. http://www.studenti.it/superiori/scuola/nuovi_istituti_tecnici_riforma_gelmini.ph p, accessed January 15, 2015. 2010c Riforma Gelmini: I Nuovi Istituti Professionali. Studenti.it. http://www.studenti.it/superiori/scuola/nuovi_istituti_professionali_riforma_gelmi ni.php, accessed January 15, 2015. Leslie, Charles M. 1976 Introduction. In Asian Medical Systems: A Comparative Study. Charles M Leslie, ed. Pp. 1–12. Berkeley: University of California Press. LeTendre, Gerald K. 460

2000 Learning to Be Adolescent: Growing up in U.S. and Japanese Middle Schools. New Haven, Conn: Yale University Press. Levi, Gabriel 2005 Linea Guida per L’autismo: Raccomandazioni Techniche - Operative per Is Servizi Di Neuropsichiatria Dell’età Evolutiva. Milano, Italy: Società Italiana di Neuropsichiatria dell’Infanzia e dell’Adolescenza. Levi, Gabriel, and Paola Bernabei 1997 Italy. In Handbook of Autism and Pervasive Developmental Disorders. 2nd edition. Donald J. Cohen and Fred R. Volkmar, eds. New York, NY: John Wiley & Sons. Levy, Alissa, and Adrienne Perry 2011 Outcomes in Adolescents and Adults with Autism: A Review of the Literature. Research in Autism Spectrum Disorders 5:1271–1282. Lippmann, A. 1991 The Geneticization of Health and Illness: Implications for Social Practice. Endocrinologie 29(1-2): 85. Liptak, Gregory S., Lauren B. Benzoni, Daniel W. Mruzek, et al. 2008 Disparities in Diagnosis and Access to Health Services for Children with Autism: Data from the National Survey of Children’s Health: Journal of Developmental & Behavioral Pediatrics 29(3):152–160. Littlewood, Roland 2000 Psychiatry’s Culture. In Anthropological Approaches to Psychological Medicine. Vieda Skultans and John Cox, eds. Pp. 66–93. London, UK: Jessica Kingsley Publishers. Llewellyn, Penny 2009 Supporting People with Intellectual Disabilities to Take Part in Focus Groups: Reflections on a Research Project. Disability & Society 24:845–856. Lloyd, S. 2008 Morals, Medicine and Change: Morality Brokers, Social Phobias, and French Psychiatry. Culture, Medicine and Psychiatry 32(2):279–297. Lo Scalzo, Alessandra, Andrea Donatini, Letizia Orzella, et al. 2009 Italy: Health System Review. Health Systems in Transition Vol. II No. 6. Copenhagen, Denmark: World Health Organization on behalf of the European Observatory on Health Systems and Policies. Lock, Margaret 1982 Popular Conceptions of Mental Health in Japan. In Cultural Conceptions of Mental Health and Therapy. Anthony J Marsella and Geoffrey M White, eds. Pp. 215–233. Culture, Illness, and Healing, v. 4. Dordrecht, the Netherlands: D. Reidel. 1995 Encounters With Aging: Mythologies of Menopause in Japan and North America. Berkeley, CA: University of California Press. 2005 Eclipse of the Gene and the Return of Divination. Current Anthropology 46(S5):S47–S70. 2008 Biosociality and Susceptibility Genes: A Cautionary Tale. In Biosocialities, Genetics and the Social Sciences Pp. 56–78. New York, NY: Routledge. 2013 The Alzheimer Conundrum: Entanglements of Dementia and Aging. Princeton 461

University Press. Lock, Margaret, Stephanie Lloyd, and Janalyn Prest 2006 Genetic Susceptibility and Alzheimer’s Disease: The Penetrance and Uptake of Genetic Knowledge. In Thinking About Dementia: Culture, Loss, and the Anthropology of Senility Pp. 123–154. New Brunswick, NJ: Rutgers University Press. Lock, Margaret M., and P. Kaufert 2001 Menopause, Local Biologies, and Cultures of Aging. American Journal of Human Biology 13(4):494–504. Lock, Margaret, and Vinh-Kim Nguyen 2011 An Anthropology of Biomedicine. John Wiley & Sons. Lora-Wainwright, Anna 2009 Of Farming Chemicals and Cancer Deaths: The Politics of Health in Contemporary Rural China. Social Anthropology 17(1):56–73. Lord, Catherine, Susan Risi, Linda Lambrecht, et al. 2000 The Autism Diagnostic Observation Schedule—Generic: A Standard Measure of Social and Communication Deficits Associated with the Spectrum of Autism. Journal of Autism and Developmental Disorders 30(3):205–223. Lord, Catherine, Michael Rutter, and Ann Le Couteur 1994 Autism Diagnostic Interview-Revised: A Revised Version of a Diagnostic Interview for Caregivers of Individuals with Possible Pervasive Developmental Disorders. Journal of Autism and Developmental Disorders 24(5):659–685. Loudon, Irvine 1997 Western Medicine: An Illustrated History. Oxford ; New York: Oxford University Press. Luborsky, Mark R. 1994 The Cultural Adversity of Physical Disability: Erosion of Full Adult Personhood. Journal of Aging Studies 8(3):239–253. Macrì, Sandra Lupi 2010 Mio figlio, un alieno dal pianeta autismo. EMP. Magaña, S., and M. J Smith 2006 Psychological Distress and Well–Being of Latina and Non–Latina White Mothers of Youth and Adults with an Autism Spectrum Disorder: Cultural Attitudes Towards Coresidence Status. American Journal of Orthopsychiatry 76(3):346– 357. Maggiolini, Silvia, and Paola Molteni 2013 Presentazione Ricerca-Azione. Paper presented at the conference of Cascina San Vicenzo, Vimercate, Italy: Associazione Cascina San Vincenzo. Mandell, David S., Richard F. Ittenbach, Susan E. Levy, and Jennifer A. Pinto-Martin 2007 Disparities in Diagnoses Received Prior to a Diagnosis of Autism Spectrum Disorder - Springer. Journal of Autism and Developmental Disorders 37(9):1795– 1802. Mandell, David S., Lisa D. Wiggins, Laura Arnstein Carpenter, et al. 2009 Racial/Ethnic Disparities in the Identification of Children With Autism Spectrum Disorders. American Journal of Public Health 99(3):493–498. Markus, Hazel Rose, and Shinobu Kitayama 462

1991 Culture and Self: Implications for Cognition, Emotion, and Motivation. Psychological Review 98:224–253. Marsella, Anthony J, and Geoffrey M White 1982 Introduction: Cultural Conceptions in Mental Health Research and Practice. In Cultural Conceptions of Mental Health and Therapy. Anthony J Marsella and Geoffrey M White, eds. Pp. 3–38. Culture, Illness, and Healing, v. 4. Dordrecht, the Netherlands: D. Reidel. Marsland, Rebecca 2012 (Bio) Sociality and HIV in Tanzania: Finding a Living to Support a Life. Medical Anthropology Quarterly 26(4):470–485. Martucci, Jessica 2010 Negotiating Exclusion MSM, Identity, and Blood Policy in the Age of AIDS. Social Studies of Science 40(2):215–241. McCandless, Jaquelyn 2009 Children with Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder. USA: Bramble Books. McDonnell, Jane Taylor 1997 On Being the “Bad” Mother of an Autistic Child. In “Bad” Mothers: The Politics of Blame in Twentieth-Century America. Molly Ladd-Taylor and Lauri Umansky, eds. Pp. 220–229. New York, NY: NYU Press. McLaughlin, Hugh 2009 What’s in a Name: “Client”, “Patient”, “Customer”, “Consumer”, “Expert by Experience”, “Service User”—What’s Next? British Journal of Social Work 39(6):1101–1117. McPartland, James C., Brian Reichow, and Fred R. Volkmar 2012 Sensitivity and Specificity of Proposed DSM-5 Diagnostic Criteria for Autism Spectrum Disorder. Journal of the American Academy of Child & Adolescent Psychiatry 51(4):368–383. Mead, Margaret 2001 Coming of Age in Samoa: A Psychological Study of Primitive Youth for Western Civilisation. HarperCollins. Medeghini, Roberto, and Enrico Valtellina 2006 Quale Disabilità? Culture, Modelli E Processi D’inclusione. Milano, Italy: FrancoAngeli s.r.l. Mehrotra, N., and S. Vaidya 2008 Exploring Constructs of Intellectual Disability and Personhood in Haryana and Delhi. Indian Journal of Gender Studies 15(2):317–340. Melone, Mary B., and Amy L. Lettick 1983 Sex Education at Benhaven. In Autism in Adolescents and Adults Pp. 169–186. Current Issues in Autism. New York, NY: Plenum Press. Mendoza-Denton, N. 1996 “Muy Macha”: Gender and Ideology in Gang-Girls’ Discourse about Makeup. Ethnos 61(1-2):47–63. Meroni, Gabriella 2008 Autismo: In Aumento in Italia, Ma Sottovalutato. VITA. http://www.vita.it/news/view/87454. 463

Mesibov, Gary B., and S. Handlan 1997 Adolescents and Adults with Autism. Handbook of Autism and Pervasive Developmental Disorders:309–324. Mesibov, Gary B. 2007 TTAP: TEACHH Transition Assessment Profile. Pro-ed. Metzler, I. 2007 “Nationalizing Embryos”: The Politics of Human Embryonic Stem Cell Research in Italy. BioSocieties 2(4):413–427. Migone, Paolo 2014 Storia Della Neuropsichiatria Infantile (prima Parte). Il Ruolo Terapeutico 125:55–70. Ministero dell’Istruzione, dell’Università e della Ricerca [MIUR] 2012 Alunni Con Disabilità. Www.istruzione.it. http://www.istruzione.it/urp/alunni_disabili.shtml, accessed February 15, 2015. Misra, Kavita 2006 Politico-Moral Transactions in Indian AIDS Service: Confidentiality, Rights and New Modalities of Governance. Anthropological Quarterly 79(1):33–74. Mitchell, Chris 2008 Asperger’s Syndrome and Mindfulness: Taking Refuge in the Buddha. 1 edition. London ; Philadelphia: Jessica Kingsley Publishers. Mitchell, Robert 2012 US Biobanking Strategies and Biomedical Immaterial Labor. BioSocieties 7(3):224–244. Moderato, Lucio 2008 Modello superability. Un approccio globale alle disabilità intellettive, ai disturbi pervasivi dello sviluppo e all’autismo. Vannini. Mol, Annemarie 1998 Missing Links, Making Links: The Performance of Some Atheroscleroses. In Differences in Medicine: Unraveling Practices, Techniques, and Bodies. Marc Berg and Annemarie Mol, eds. Pp. 144–165. Body, Commodity, Text. Durham: Duke University Press. 2000 Pathology and the Clinic: An Ethnographic Presentation of Two Atheroscleroses. In Living and Working with the New Medical Technologies: Intersections of Inquiry. Margaret M Lock, Allan Young, and Alberto Cambrosio, eds. Pp. 82– 102. Cambridge Studies in Medical Anthropology, 8. Cambridge, UK: Cambridge University Press. Mol, Annemarie, and Marc Berg 1998 Differences in Medicine: An Introduction. In Differences in Medicine: Unraveling Practices, Techniques, and Bodies. Marc Berg and Annemarie Mol, eds. Pp. 1–12. Body, Commodity, Text. Durham: Duke University Press. Molteni, Paola 2011 Voci dal silenzio. Testimonianze e indicazioni a sostegno delle famiglie che vivono l’autismo. FrancoAngeli. Mordini, Emilio, and Corinna Ottolini 2007 Body Identification, Biometrics and Medicine: Ethical and Social Considerations. ANNALI-ISTITUTO SUPERIORE DI SANITA 43(1):51. 464

Mortimer, Jeylan T., and Reed Larson 2002 Macrostructural Trends and the Reshaping of Adolescence. In The Changing Adolescent Experience: Societal Trends and the Transition to Adulthood Pp. 1– 17. Cambridge ; New York: Cambridge University Press. Murray, Stuart 2008 Representing Autism: Culture, Narrative, Fascination. Liverpool University Press. 2009 The Perils of Scientific Obedience: Bioethics under the Spectre of Biofascism. In Critical Interventions in the Ethics of Healthcare: Challenging the Principle of Autonomy in Bioethics. Stuart J. Murray and Dave Holmes, eds. Burlington, VT: Ashgate Publishing Company. Nadesan, Majia Holmer 2005 Constructing Autism: Unravelling the “Truth” and Understanding the Social. New York, NY: Routledge. 2013 Autism and Genetics: Profit, Risk, and Bare Life. In Worlds of Autism: Across the Spectrum of Neurological Difference. Joyce Davidson and Michael Orsini, eds. University of Minnesota Press. Nahman, Michael 2008 Synecdochic Richochets: Biosocialities in a Jerusalem IVF Clinic. In Biosocialities, Genetics and the Social Sciences: Making Biologies and Identities. Pp. 117–135. London, UK: Routledge. Nardocci, Franco 2009 The Birth of Child and Adolescent Neuropsychiatry: From Rehabilitation and Social Inclusion of the Mentally Handicapped, to the Care of Mental Health during Development. Ann Ist Super Sanità 45:33–38. Narzisi, Antonio, and Filippo Muratori 1981 Autismo: diversità percettiva e riconoscimento delle emozioni al confine di contatto tra organismo e ambiente. In Psicoterapia della Gestalt e neuroscienze: Dall’isomorfismo alla simulazione incarnata. Pietro Andrea Cavaleri, ed. Milano, Italia: FrancoAngeli. National Institute of Mental Health N.d. Autism Spectrum Disorder. http://www.nimh.nih.gov/health/topics/autism- spectrum-disorders-asd/index.shtml, accessed August 29, 2014. 2007 Autism Spectrum Disorders (Pervasive Developmental Disorders). With Addendum January 2007 (NIH 5511). Department of Health and Human Services, National Institutes of Health. Navon, Daniel, and Gil Eyal 2014 The Trading Zone of Autism Genetics: Examining the Intersection of Genomic and Psychiatric Classification. BioSocieties 9(3):329–352. Nguyen, Vihn-Kim 2005 Antiretroviral Globalism, Biopolitics, and Therapeutic Citizenship. Aihwa Ong and Stephen J. Collier, eds. Global Assemblages:124–44. Nichols, Shana, and Audrey Blakeley-Smith 2010 “I’m Not Sure We’re Ready for This...”: Working with Families Toward Facilitating Healthy Sexuality for Individuals with Autism Spectrum Disorders. Social Work in Mental Health 8:72–91. Nicoletti, Gianluca 465

2013 Una notte ho sognato che parlavi. Edizioni Mondadori. Niewöhner, Jörg 2011 Epigenetics: Embedded Bodies and the Molecularisation of Biography and Milieu. BioSocieties 6(3):279–298. Norton, A. T, and O. Zehner 2008 Which Half Is Mommy? Tetragametic Chimerism and Trans-Subjectivity. Women’s Studies Quarterly 36(3/4):106–125. Novas, Carlos, and Nikolas Rose 2000 Genetic Risk and the Birth of the Somatic Individual. Economy and Society 29:485–513. Ochs, Elinor, Tamar Kremer-Sadlik, Karen Gainer Sirota, and Olga Solomon 2004 Autism and the Social World: An Anthropological Perspective. Discourse Studies 6:147. Ochs, Elinor, Tamar Kremer-Sadlik, Olga Solomon, and Karen Gainer Sirota 2001 Inclusion as Social Practice: Views of Children with Autism. Social Development 10(3):399–419. Ochs, Elinor, and Olga Solomon 2004 Introduction: Discourse and Autism. Discourse Studies 6(2):139–146. Ohnuki-Tierney, Emiko 1984 Illness and Culture in Contemporary Japan: An Anthropological View. Cambridge [Cambridgeshire]: Cambridge University Press. Olney, Marjorie F., and Amanda Kim 2001 Beyond Adjustment: Integration of Cognitive Disability into Identity. Disability & Society 16(4):563–583. Orans, Martin 1996 Not Even Wrong: Margaret Mead, Derek Freeman, and the Samoans. Chandler & Sharp Publishers. Orchard, Vivienne 2013 The“ Rendez-Vous Manqués” of Francophone and Anglophone Disability Studies: The Case of Autism in Cross-Cultural Context. Synergies Royaume Uni et Irlande 6:53–73. Orsini, Michael 2008 Hepatitis C and the Dawn of Biological Citizenship: Unravelling the Policy Implications. In Contesting Illness: Processes and Practices. Pamela Moss and Katherine Teghtsoonian, eds. Pp. 107–122. Toronto: University of Toronto Press. 2009 Contesting the Autistic Subject: Biological Citizenship and the Autism/Autistic Movement. In Critical Interventions in the Ethics of Healthcare: Challenging the Principle of Autonomy in Bioethics. Stuart J. Murray and Dave Holmes, eds. Pp. 115–130. Burlington, VT: Ashgate Publishing Company. Orsmond, Gael I., Marty Wyngaarden Krauss, and Marsha Mailick Seltzer 2004 Peer Relationships and Social and Recreational Activities among Adolescents and Adults with Autism. Journal of Autism and Developmental Disorders 34(3):245– 256. Orsmond, Gael I., Hsin-Yu Kuo, and Marsha Mailick Seltzer 2009 Siblings of Individuals with an Autism Spectrum Disorder: Sibling Relationships and Welbeing in Adolescence and Adulthood. Autism 13:59–80. 466

Ortega, Francisco 2009 The Cerebral Subject and the Challenge of Neurodiversity. Biosocieties 4:425– 445. Ortega, Francisco, and Suparna Choudhury 2011 “Wired up Differently”: Autism, Adolescence and the Politics of Neurological Identities. Subjectivity 4:323–345. Ortega, Francisco, and Fernando Vidal 2007 Mapping the Cerebral Subject in Contemporary Culture. RECIIS-Electronic Journal of Communication Information & Innovation in Health 1(2):255–259. Osteen, Mark 2008 Autism and Representation. Routledge. Oudshoorn, Nelly, and Andre Somers 2007 Constructing the Digital Patient: Patient Organizations and the Development of Health Websites. In Biomedicine as Culture: Instrumental Practices, Technoscientific Knowledge, and New Modes of Life. 1st edition. Regula Valérie Burri and Joseph Dumit, eds. Pp. 205–222. New York, NY: Routledge. Owen-DeSchryver, Jamie S., Edward G. Carr, Sanja I. Cale, and Audrey Blakeley-Smith 2008 Promoting Social Interactions between Students with Autism Spectrum Disorders and Their Peers in Inclusive School Settings. Focus on Autism and Other Developmental Disabilities 23(1):15–28. Panerai, Simonetta, Marinella Zingale, Grazia Trubia, et al. 2009 Special Education Versus Inclusive Education: The Role of the TEACCH Program. Journal of Autism and Developmental Disorders 39:874–882. Panofsky, Aaron 2010 Generating Sociability to Drive Science: Patient Advocacy Organizations and Genetics Research. Social Studies of Science 41:1–27. Parikh, Shanti, and Vincanne Adams 2005 From Auntie to Disco: The Bifurcation of Risk and PLeasure in Sex Education in Uganda. In Sex in Development Pp. 125–158. Raleigh, NC: Duke University Press. Parsons, Talcott 1951 The Social System. New York, NY: Free Press. Paxson, Heather 2008 Post-Pasteurian Cultures: The Microbiopolitics of Raw-Milk Cheese in the United States. Cultural Anthropology 23(1):15–47. Petryna, Adriana 2002 Life Exposed: Biological Citizens after Chernobyl. Princeton, NJ: Princeton University Press. De Pina-Cabral, Joao 1989 The Mediterranean as a Category of Regional Comparison: A Critical View. Current Anthropology 399–406. Poon, K. K. 2011 The Activities and Participation of Adolescents with Autism Spectrum Disorders in Singapore: Findings from an ICF-Based Instrument. Journal of Intellectual Disability Research 55:790–800. Prince, Dawn Eddings 467

2010 An Exceptional Path: An Ethnographic Narrative Reflecting on Autistic Parenthood from Evolutionary, Cultural, and Spiritual Perspectives. Ethos 38(1):56–68. Prince Eddings, Dawn 2013 “All The Things I have Ever Been”: Autoethnographic Reflections on Academic Writing and Autism. In Worlds of Autism: Across the Spectrum of Neurological Difference. Joyce Davidson and Michael Orsini, eds. University of Minnesota Press. Probst, Paul 1998 Child Health-Related Cognitions of Parents with Autistic Children: A Cross- National Exploratory Study. In The Family and Family Therapy in International Perspective Pp. 461–483. Trieste, Italy: Lint Editoriale. Quail, Christine 2011 Nerds, Geeks, and the Hip/Square Dialectic in Contemporary Television. Television & New Media 12(5):460–482. Rabeharisoa, Vololona, and Michel Callon 2004 Patients and Scientists in French Muscular Dystrophy Research. In States of Knowledge: The Co-Production of Science and the Social Order. Sheila Jasanoff, ed. Pp. 142–160. New York, NY: Routledge. Rabeharisoa, Vololona, Tiago Moreira, and Madeleine Akrich 2014 Evidence-Based Activism: Patients’, Users’ and Activists’ Groups in Knowledge Society. BioSocieties 9(2):111–128. Rabeharisoa, Vololona, Tiago Moreira, Madeleine Akrich, and others 2013 Evidence-Based Activism: Patients’ Organisations, Users’ and Activist’s Groups in Knowledge Society. http://halshs.archives-ouvertes.fr/hal-00822864/, accessed November 11, 2014. Rabinow, Paul 1999 Artificiality and Enlightenment: From Sociobiology to Biosociality. In The Science Studies Reader. Mario Biagioli, ed. Pp. 407–416. Princeton: Princeton University Press. Race, Kane 2012 “Frequent Sipping”: Bottled Water, the Will to Health and the Subject of Hydration. Body & Society 18(3-4):72–98. Ramachandran, Vilayanur S., and Lindsay M. Oberman 2006 Broken Mirrors: A Theory of Autism. Scientific American 295(5):62–69. Raman, S., and R. Tutton 2010 Life, Science, and Biopower. Science, Technology & Human Values 35(5):711– 734. Ramirez, Michelle, Andrea Altschuler, Carmit McMullen, et al. 2014 “I Didn’t Feel Like I Was a Person Anymore”: Realigning Full Adult Personhood after Ostomy Surgery. Medical Anthropology Quarterly. Rapp, Rayna 2000a Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America. New York: Routledge. 2000b Extra Chromosomes and Blue Tulips: Medico-Familial Interpretations. In Living and Working with the New Medical Technologies: Intersections of Inquiry. 468

Margaret M Lock, Allan Young, and Alberto Cambrosio, eds. Pp. 184–208. Cambridge Studies in Medical Anthropology, 8. Cambridge, UK: Cambridge University Press. 2003 Cell Life and Death, Child Life and Death. In Remaking Life & Death: Toward an Anthropology of the Biosciences. Sarah Franklin and Margaret M Lock, eds. Pp. 129–164. School of American Research Advanced Seminar Series. Santa Fe: School of American Research Press. Raspberry, K., and D. Skinner 2007 Experiencing the Genetic Body: Parents’ Encounters with Pediatric Clinical Genetics. Medical Anthropology 26(4):355–391. 2010 Enacting Genetic Responsibility: Experiences of Mothers Who Carry the Fragile X Gene. Sociology of Health & Illness 33(3):1–14. Ravanelli, Alice 2013 L’autismo Nella Lettaratura Italiana Del Nuovo Millennio. Tesi, Università Cattolica Sacre Cuore, Milano, Italia. Raven, Jean 2003 Raven Progressive Matrices. In Handbook of Nonverbal Assessment Pp. 223– 237. Springer. http://link.springer.com/chapter/10.1007/978-1-4615-0153-4_11, accessed May 5, 2014. Reubi, David 2010 Blood Donors, Development and Modernisation: Configurations of Biological Sociality and Citizenship in Post-Colonial Singapore. Citizenship Studies 14(5):473–493. Rheinberger, Hans-Jorg 2000 Beyond Nature and Culture: Modes of Reasoning in the Age of Molecular Biology and Medicine. In Living and Working with the New Medical Technologies: Intersections of Inquiry. Margaret M Lock, Allan Young, and Alberto Cambrosio, eds. Pp. 19–30. Cambridge Studies in Medical Anthropology, 8. Cambridge, UK: Cambridge University Press. Rhodes, Tim, Magdalena Harris, and Anthea Martin 2013 Negotiating Access to Medical Treatment and the Making of Patient Citizenship: The Case of Hepatitis C Treatment. Sociology of Health & Illness 35(7):1023– 1044. Rios, Clarice, and Barbara Costa Andrade in press The Changing Face of Autism in Brazil. Culture, Medicine and Psychiatry. Rizzolatti, Giacomo, and Maddalena Fabbri-Destro 2010 Mirror Neurons: From Discovery to Autism. Experimental Brain Research 200(3- 4):223–237. Roberts, Celia 2007 Messengers of Sex: Hormones, Biomedicine and Feminism. Cambridge, UK: Cambridge University Press. Roberts, Elizabeth F. S. 2008 Biology, Sociality and Reproductive Modernity in Ecuadorian in- Vitro Fertilization: The Particulars of Place. In Biosocialities, Genetics and the Social Sciences. Sahra Gibbon and Carlos Novas, eds. Pp. 79–97. London: 469

Routledge. Robins, Steven 2006 From “Rights” to “Ritual”: AIDS Activism in South Africa. American Anthropologist 108:312–323. Rogers, Sally J., and Geraldine Dawson 2009 Early Start Denver Model for Young Children with Autism: Promoting Language, Learning, and Engagement. 1 edition. New York: The Guilford Press. Romain, Tiffany 2010 Extreme Life Extension: Investing in Cryonics for the Long, Long Term. Medical Anthropology 29(2):194–215. Romano, Maria Francesca, and Michela Natilli 2011 I Giovani in Toscana. Vite E Identità. Pacini Editore. https://www.iris.sssup.it/handle/11382/310364, accessed February 5, 2015. Rosaldo, Michelle Zimbalist, and Louise Lamphere, eds. 1974 Woman, Culture, and Society. Stanford University Press. Rose, Nikolas 2003 Neurochemical Selves. Society 41: 46–59. 2007a The Politics of Life Itself. Princeton: Princeton University Press. 2007b Genomic Susceptibility as an Emergent Form of Life? Genetic Testing, Identity, and the Remit of Medicine. In Biomedicine as Culture: Instrumental Practices, Technoscientific Knowledge, and New Modes of Life. 1st edition. Regula Valérie Burri and Joseph Dumit, eds. Pp. 141–150. Routledge. Rose, Nikolas, and Carlos Novas 2005 Biological Citizenship. In Global Assemblages: Technology, Politics, and Ethics as Anthropological Problems. Aiwha Ong and Stephen J. Collier, eds. Pp. 439– 463. Malden, MA: Blackwell Publishing. Rosenberg, Rebecca E., Amy M. Daniels, J. Kiely Law, Paul A. Law, and Walter E. Kaufmann 2009 Trends in Autism Spectrum Disorder Diagnoses: 1994–2007. Journal of Autism and Developmental Disorders 39(8):1099–1111. Rubel, Arthur J., and Michael R. Hass 1996 Ethnomedicine. In Medical Anthropology: Contemporary Theory and Method. Rev. ed. Carolyn Fishel Sargent and Thomas M Johnson, eds. Pp. 113–130. Westport, Conn: Praeger. Ruef, Michael B., and Ann P. Turnbull 2002 The Perspective of Individuals with Cognitive Disabilities And/or Autism on Their Lives and Their Problem Behavior. Research & Practice for Persons with Severe Disabilities 27:125–140. Russo, Concetta, Michele Capararo, and Enrico Valtellina 2014 A sé e agli altri. Storia della manicomializzazione dell’autismo e delle altre disabilità relazionali nelle cartelle cliniche di S. Servolo. 1. edizione. Milano etc.: Mimesis. Ryan, S., and K. R. Cole 2009 From Advocate to Activist? Mapping the Experiences of Mothers of Children on the Autism Spectrum. Journal of Applied Research in Intellectual Disabilities 22(1):43–53. 470

Sacks, Oliver 1995 An Anthropologist on Mars: Seven Paradoxical Tales. Vintage Books. 1998 The Man Who Mistook His Wife For A Hat: And Other Clinical Tales. Simon and Schuster. Salvador-Carulla, L., G. Tibaldi, S. Johnson, et al. 2005 Patterns of Mental Health Service Utilisation in Italy and Spain. Social Psychiatry and Psychiatric Epidemiology 40(2):149–159. Santone, G., G. de Girolamo, I. Falloon, et al. 2005 The Process of Care in Residential Facilities. Social Psychiatry and Psychiatric Epidemiology 40(7):540–550. Saracci, Rodolfo 2011 L’epidemiologia in Centocinquanta Anni Di Italia Unitaria: Appunti per Una Storia Ancora Da Scrivere. Epidemiologia & Prevenzione 35(5-6 Supp. 2):14–17. Saracci, Rodolfo, Benedetto Terracini, and Franco Merletti 2011 Lo Sviluppo Dell’epidemiologia Moderna in Italia. Epidemiologia & Prevenzione 35(5-6 Supp. 2):18–24. Sargent, C., and S. Larchanche 2007 The Muslim Body and the Politics of Immigration in France: Popular and Biomedical Representations of Malian Migrant Women. Body & Society 13(3):79–102. Sarrett, Jennifer 2015 Custodial Homes, Therapeutic Homes, and Parental Acceptance: Parental Experiences of Autism in Kerala, India and Atlanta, GA USA. Culture, Medicine and Psychiatry. DOI: 10.1007/s11013-015-9441-z Scheper-Hughes, Nancy, and Anne M. Lovell 1986 Breaking the Circuit of Social Control: Lessons in Public Psychiatry from Italy and Franco Basaglia. Social Science & Medicine 23(2):159–178. Scheper-Hughes, Nancy 2001 Saints, Scholars, and Schizophrenics: Mental Illness in Rural Ireland. Berkeley: University of California Press. Scheper-Hughes, Nancy, and Margaret Lock 1987 The Mindful Body: A Prolegomenon to Future Work in Medical Anthropology. Medical Anthropology Quarterly 1(1):6–41. Schlegel, Alice, and Herbert Barry III 1991 Adolescence: An Anthropological Inquiry. New York, NY: Free Press. Schneider, Arnd 2000 Futures Lost: Nostalgia and Identity among Italian Immigrants in Argentina. Oxford, UK: P. Lang. Schopler, Eric, and Robert J. Reichler 1976 Psychoeducational Profile. Chapel Hill, NC: Child Development Products, Division TEACCH, Dept. of Psychiatry, School of Medicine, Health Affairs, University of North Carolina. Schopler, Eric, Robert Jay Reichler, and Barbara Rochen Renner 1986 The Childhood Autism Rating Scale (CARS): For Diagnostic Screening and Classification of Autism. Irvington New York. http://www.getcited.org/pub/102448134, accessed May 5, 2014. 471

Schreibman, Laura 2005 The Science and Fiction of Autism. Cambridge, MA: Harvard University Press. Seltzer, Marsha Mailick, Leonard Abbeduto, Marty Wyngaarden Krauss, Jan Greenberg, and April Swe 2004 Comparison Groups in Autism Family Research: Down Syndrome, Fragile X Syndrome, and Schizophrenia. Journal of Autism and Developmental Disorders 34(1):41–48. Senghas, R. J, and L. Monaghan 2002 Signs of Their Times: Deaf Communities and the Culture of Language. Annual Review of Anthropology: 69–97. Servizi per Disabili N.d. COMUNE DI MILANO. http://www.comune.milano.it/portale/wps/portal/searchresultdetail?WCM_GLOB AL_CONTEXT=/wps/wcm/connect/ContentLibrary/ho+bisogno+di/ho+bisogno+ di/sostegno+e+assistenza_per+disabili_servizi+per+disabili, accessed January 17, 2015. Shattuck, Paul T. 2006 The Contribution of Diagnostic Substitution to the Growing Administrative Prevalence of Autism in US Special Education. Pediatrics 117:1028–1037. Shearer, M. S., and D. E. Shearer 1972 The Portage Project: A Model for Early Childhood Education. Exceptional Children 39(3):210–217. Shorter, Edward 1997 A History of Psychiatry: From the Era of the Asylum to the Age of Prozac. New York: John Wiley & Sons. Shtayermman, Oren 2009 An Exploratory Study of the Stigma Associated With a Diagnosis of Asperger’s Syndrome: The Mental Health Impact on the Adolescents and Young Adults Diagnosed with a Disability with a Social Nature. Journal of Human Behavior in the Social Environment 19:293–313. Silberman, S. 2001 The Geek Syndrome. Wired: 9, 12. The Condé Nast Publications Inc. http://www. wired. com/wired/archive/9.12/aspergers. html. Silverman, Chloe 2008a Fieldwork on Another Planet: Social Science Perspectives on the Autism Spectrum. BioSocieties 3:325–341. 2008b Brains, Pedigrees, and Promises: Lessons from the Politics of Autism Genetics. In Biosocialities, Genetics and the Social Sciences: Making Biologies and Identities. Sahra Gibbon and Carlos Novas, eds. Pp. 38–55. London: Routledge. 2012 Understanding Autism: Parents, Doctors, and the History of a Disorder. Princeton, NJ: Princeton University Press. Simon, Jonathan 2008 War on! Why A’war on Cancer’should Replace Our’war on Crime’(and Terror). European Journal of Cultural Studies 11(3):351–369. Sinclair, Jim 1993 Don’t Mourn for Us. http://www.autreat.com/dont_mourn.html. 472

Sirota, Karen Gainer 2004 Positive Politeness as Discourse Process: Politeness Practices of High- Functioning Children with Autism and Asperger Syndrome. Discourse Studies 6(2):229–251. 2010 Narratives of Distinction: Personal Life Narrative as a Technology of the Self in the Everyday Lives and Relational Worlds of Children with Autism. Ethos 38(1):93–115. Sistema Nazionale per le Linee Guida-Istituto Superiore di Sanità 2011 Il trattamento dei disturbi dello spettro autistico nei bambini e negli adolescenti. Linea Guida 21. Roma, Italy: Istituto Superiore di Sanità. 2012 Autismo: Quale Trattamento per Bambini E Adolescenti? http://www.snlg- iss.it/cms/files/scheda_autismo_14-03.pdf. Sleeboom-Faulkner, M. E 2011 Genetic Testing, Governance, and the Family in the People’s Republic of China. Social Science & Medicine 72(11):1802–1809. Smith, Phil, and Christine Routel 2009 Transition Failure: The Cultural Bias of Self-Determination and the Journey to Adulthood for People with Disabilities. Disability Studies Quarterly 30(1). http://dsq-sds.org/article/view/1012/1224, accessed December 26, 2014. Società Italian di Neuropsichiatria dell’Infanzia e dell’Adolescenza (SINPIA) N.d. Chi Siamo. www.sinpia.edu. http://www.sinpia.eu/index/index/atom/1, accessed January 19, 2015. Sökefeld, Martin 1999 Debating Self, Identity, and Culture in Anthropology. Current Anthropology 40:417–448. Solomon, Olga 2004 Narrative Introductions: Discourse Competence of Children with Autistic Spectrum Disorders. Discourse Studies 6(2):253–276. 2008 Language, Autism, and Childhood: An Ethnographic Perspective. Annual Review of Applied Linguistics 28(1):150–169. 2010 Sense and the Senses: Anthropology and the Study of Autism. Annual Review of Anthropology 39:241–259. Solomon, Olga, and Nancy Bagatell 2010 Introduction: Autism: Rethinking the Possibilities. Special Issue: Rethinking Autism, Rethinking Anthropology. Ethos 38:1–7. Sommer, Marianne 2010 DNA and Cultures of Remembrance: Anthropological Genetics, Biohistories and Biosocialities. BioSocieties 5(3):366–390. Sotgiu, I., D. Galati, M. Manzano, et al. 2011 Parental Attitudes, Attachment Styles, Social Networks, and Psychological Processes in Autism Spectrum Disorders: A Cross-Cultural Perspective. The Journal of Genetic Psychology 172(4):353–375. Soulières, Isabelle, Michelle Dawson, Morton Ann Gernsbacher, and Laurent Mottron 2011 The Level and Nature of Autistic Intelligence II: What about Asperger Syndrome? PloS One 6(9):e25372. Sparrow, Sara S., David A. Balla, and Domenic V. Cicchetti 473

1984 Vineland Adaptive Behavior Scales: Interview Edition, Survey Form Manual. American Guidance Service Circle Pines, MN. http://www.getcited.org/pub/102417475, accessed May 5, 2014. Spitzer, Robert L. 1997 From Feighner to RDC, DSM-III, DSM-III-R, DSM-IV, and ICD-10. In The Feighner Criteria: Their Role in Psychiatric Progress: A 25th Anniversary Review. George Winokur, ed. Pp. 11–13. Secaucus, NJ: Churchill Communications North America. Sterponi, Laura 2004 Construction of Rules, Accountability and Moral Identity by High-Functioning Children with Autism. Discourse Studies 6(2):207–228. Sterponi, Laura, and Alessandra Fasulo 2010 “How to Go On”: Intersubjectivity and Progressivity in the Communication of a Child with Autism. Ethos 38(1):116–142. Storia » Società Italiana Di Psichiatria N.d. http://www.psichiatria.it/chi-siamo/storia, accessed January 19, 2015. Suárez-Navaz, Liliana 2005 Rebordering the Mediterranean: Boundaries and Citizenship in Southern Europe. Berghahn Books. Sundberg, M L, and J Michael 2001 The Benefits of Skinner’s Analysis of Verbal Behavior for Children with Autism. Behavior Modification 25(5):698–724. Symes, Wendy, and Neil Humphrey 2010 Peer-Group Indicators of Social Inclusion among Pupils with Autistic Spectrum Disorders (ASD) in Mainstream Secondary Schools: A Comparative Study. School Psychology International 31(5):478–494. Tanassi, Lucia M 2004 Compliance as Strategy: The Importance of Personalised Relations in Obstetric Practice. Social Science and Medicine 59(10):2053–2069. Taussig, Karen-Sue, Rayna Rapp, and Deborah Heath 2003 Flexible Eugenics: Technologies of the Self in the Age of Genetics. In Genetic Nature/culture: Anthropology and Science Beyond the Two-Culture Divide. Alan H. Goodman, Deborah Heath, and M. Susan Lindee, eds. University of California Press. Thompson, James Richard 2004 Supports Intensity Scale: Users Manual. American Association on Mental Retardation. Thompson, Travis 2007 Making Sense of Autism. Baltimore, MD: Paul H. Brookes Publishing. Tissot, Catherine 2009 Establishing a Sexual Identity: Case Studies of Learners with Autism and Learning Difficulties. Autism 13: 551–566. Townsend, John Marshall 1978 Cultural Conceptions and Mental Illness: A Comparison of Germany and America. Chicago: University of Chicago Press. Treccani, l’Enciclopedia Italiana. 474

N.d. Scuola Media. http://www.treccani.it/enciclopedia/scuola-media/, accessed February 15, 2015. Twachtman-Cullen, Diane, and Jennifer Twachtman-Reilly 2007 Communication and Language Issues in Less Able School-Age Children with Autism. In Growing Up with Autism: Working with School-Age Children and Adolescents Pp. 73–94. New York: NY: The Guilford Press. UNESCO-IBE 2010 Italy. World Data on Education, VII Ed. Paris, France: UNESCO-IBE. University of North Carolina at Chapel Hill School of Medicine 2014 TEACCH.com. teacch.com. Valentine, Kylie 2010 A Consideration of Medicalisation: Choice, Engagement and Other Responsibilities of Parents of Children with Autism Spectrum Disorder. Social Science & Medicine 71(5):950–957. Valtellina, Enrico 2011 Metodologie Emancipative Nella Ricerca Sulla Neurodiversità. Note Sul Fieldwork Su Marte. Italian Journal of Disability Studies - Rivista Italiana Di Studi Sulla Disabilità 1:31–38. 2015 Tipi umani particolarmente strani: La sindrome di Asperger come oggetto culturale. Università Ca’Foscari Venezia. Van Der Geest, S., and K. Finkler 2004 Hospital Ethnography: Introduction. Social Science & Medicine 59(10):1995– 2001. Van Moffaert, M., and A. Vereecken 1989 Somatization of Psychiatric Illness in Mediterranean Migrants in Belgium. Culture, Medicine and Psychiatry 13(3): 297–313. Verhoeff, Berend 2012 What Is This Thing Called Autism? A Critical Analysis of the Tenacious Search for Autism’s Essence. BioSocieties 7(4):410–432. Vermeulen, Eric 2004 Dealing with Doubt: Making Decisions in a Neonatal Ward in The Netherlands. Social Science and Medicine 59(10):2071–2085. Vestel, V. 2009 Limits of Hybridity versus Limits of Tradition?: A Semiotics of Cultural Reproduction, Creativity, and Ambivalence among Multicultural Youth in Rudenga, East Side Oslo. Ethos 37(4):466–488. Vogel, Gila, and Shunit Reiter 2003 Spiritual Dimensions of Bar/Bat Mitzvah Ceremonies for Jewish Children with Developmental Disabilities. Education and Training in Developmental Disabilities 38:314–322. 2004 Significance of the Bar/Bat Mitzvah Ceremony for Parents of Jewish Children with Developmental Disabilities. Mental Retardation 42:294–303. Vogel, Morris J, and Charles E Rosenberg, eds. 1979 The Therapeutic Revolution; Essays in the Social History of American Medicine. Philadelphia, PA: University of Pennsylvania Press. Vrecko, Scott 475

2008 Capital Ventures into Biology: Biosocial Dynamics in the Industry and Science of Gambling. Economy and Society 37(1):50–67. Waltz, Mitzi 2003 Metaphors of Autism, and Autism as Metaphor: An Exploration of Representation. In Second Global Conference. Inter-Disciplinary. Net. https://www.inter-disciplinary.net/ptb/mso/hid/hid2/waltz%20paper.pdf, accessed August 29, 2014. Wazana, Ashley, Michaeline Bresnahan, and Jennie Kline 2007 The Autism Epidemic: Fact or Artifact? Journal of the American Academy of Child & Adolescent Psychiatry 46:721–730. Wechsler, David 2008 Wechsler Adult Intelligence Scale–Fourth Edition (WAIS–IV). San Antonio, TX: NCS Pearson. http://www.statisticssolutions.com/academic- solutions/resources/directory-of-survey-instruments/wechsler-adult-intelligence- scale-fourth-edition-wais-iv/, accessed May 5, 2014. Wehling, P. 2011 The “technoscientization” of Medicine and Its Limits: Technoscientific Identities, Biosocialities, and Rare Disease Patient Organizations. Poiesis & Praxis: International Journal of Technology Assessment and Ethics of Science: 1–16. Weisner, T. S., and E. D. Lowe 2005 Globalization, Childhood, and Psychological Anthropology. In A Companion to Psychological Anthropology Pp. 315–336. Weiss, Robert 1995 Learning from Strangers: The Art and Method of Qualitative Interview Studies. New York: The Free Press. Whiting, John, V. K. Burbank, and M. S. Ratner 1994 The Duration of Maidenhood Across Cultures. In Culture and Human Development: The Selected Papers of John Whiting Pp. 282–305. Cambridge, UK: Cambridge University Press. Whitington, Jerome 2013 Fingerprint, Bellwether, Model Event: Climate Change as Speculative Anthropology. Anthropological Theory 13(4):308–328. Whyte, Susan Reynolds 2009 Health Identities and Subjectivities: The Ethnographic Challenge. Medical Anthropology Quarterly 32:6–15. Wilhelm-Solomon, Matthew 2013 The Priest’s Soldiers: HIV Therapies, Health Identities, and Forced Encampment in Northern Uganda. Medical Anthropology 32(3):227–246. Willems, Dick 1998 Inhaling Drugs and Making Worlds: A Proliferation of Lungs and Asthmas. In Differences in Medicine: Unraveling Practices, Techniques, and Bodies. Marc Berg and Annemarie Mol, eds. Pp. 105–118. Body, Commodity, Text. Durham: Duke University Press. Wing, Lorna 1981 Asperger’s Syndrome: A Clinical Account. Psychological Medicine 11(1):115– 129. 476

Winokur, George, ed. 1997 The Feighner Criteria: Their Role in Psychiatric Progress: A 25th Anniversary Review. Secaucus, NJ: Churchill Communications North America. World Health Organization 2008 International Classification of Diseases (ICD). World Health Organization. http://apps.who.int/classifications/icd10/browse/2010/en. World Health Organization Working Group on Changing Patterns in Mental Health 1980 Changing Patterns in Mental Health Care: Report on a WHO Working Group, Cologne, 27 November-1 December 1978. Regional Office for Europe, World Health Organization. Wright, Scott D., Denise E. Brooks, Valerie DAstous, and Temple Grandin 2013 The Challenge and Promise of Autism Spectrum Disorders in Adulthood and Aging: A Systematic Review of the Literature (1990-2013). Autism Insights(5). Yamaguchi, S. 2004 Nursing Culture of an Operating Theater in Italy. Nursing & Health Sciences 6(4):261–269. Yan, Y. 1999 Rural Youth and Youth Culture in North China. Culture, Medicine and Psychiatry 23(1):75–97. Young, Allan 1995 The Harmony of Illusions: Inventing Post-Traumatic Stress Disorder. Princeton, NJ: Princeton University Press.