City University of New York (CUNY) CUNY Academic Works All Dissertations, Theses, and Capstone Projects Dissertations, Theses, and Capstone Projects 6-2014 Assembling Autism Kate Suzanne Jenkins Graduate Center, City University of New York How does access to this work benefit ou?y Let us know! More information about this work at: https://academicworks.cuny.edu/gc_etds/231 Discover additional works at: https://academicworks.cuny.edu This work is made publicly available by the City University of New York (CUNY). Contact: [email protected] i ASSEMBLING AUTISM by KATE SUZANNE JENKINS A dissertation submitted to the Graduate Faculty in Sociology in partial fulfillment of the requirements for the degree of Doctor of Philosophy, The City University of New York 2014 ii @ 2014 KATE JENKINS All Rights Reserved iii This manuscript has been read and accepted for the Graduate Faculty in Sociology in satisfaction of the dissertation requirement for the degree of Doctor of Philosophy. NAME Date Chair of Examining Committee NAME Date Executive Officer NAME NAME NAME NAME Supervisory Committee THE CITY UNIVERSITY OF NEW YORK iv Abstract ASSEMBLING AUTISM by KATE SUZANNE JENKINS Adviser: PATRICIA CLOUGH Autism is a growing social concern because of the epidemic-like growth in diagnoses among children. The lives and experiences of adults who have an autism diagnosis, however, are not as well documented. This dissertation project seeks to resolve that dearth of research. I conducted a year of participant observation at four locations of social, self-advocacy, and peer to peer support groups. I also conducted interviews with leaders and participants. I also participated (as a researcher) in an experiment in social skills acquisition led by participants from my ethnographic field work, fulfilling the planned participatory action research component of my original proposal. I found that many of the problems my participants experienced were both mundane and routine for individuals who are marginalized, but at the same time, made extraordinary by the presence of autism. I found that the affective and sensory components of the disorder were primary in the lives of my participants, though these issues are generally secondary to the social complications that typify the social construction of autism elsewhere. I also found that my participants struggled to control the very meaning of autism, especially as the diagnostic criteria were rewritten. Autism has implications for Western notions of citizenship and subjectivity, as well as identity politics and social movements, namely that capacity for rationality is not necessarily associated with capacity for social interaction or independent living. Autism presents as a spectrum and constellation of impairments and differences, and as such, contests the notion of a unified self. v vi ACKNOWLEDGEMENTS This dissertation is dedicated to Shirley Pressburg Jenkins, PhD, of blessed memory, whose exemplary academic record and persistent support for all of my pursuits continue to inspire me today. The author would also like to acknowledge the various supports that have enabled her to complete this dissertation and doctoral degree, including her mother and stepfather, Drayton and Bill Gerety, who provided a place to live; her father and stepmother, Peter and Mary Jenkins, who generously supported and subsidized various aspects of graduate school; her extended family, half of whom are academics or campus brats and therefore expected and assumed the author’s success; her spouse, Zach Strassburger, who not only supported her through this ordeal but is moving to rural Minnesota in pursuit of that elusive tenure track; and her circle of friends at the Graduate Center, especially the fabulous Kimberly Cunningham. She would also like to thank her committee, Victoria Pitts-Taylor, who introduced her to Foucault, Barbara Katz-Rothman, who also mentored her through the Disability Studies program, and Patricia Clough, her beloved advisor. Finally, she would also like to acknowledge the coffee shops and tea houses of New Haven, CT and Squirrel Hill, Pittsburgh, PA, for the millions of milligrams of caffeine, the broad bandwidth of wifi, and a place to work away from home. vii TABLE OF CONTENTS Chapter 1…Page 1 Chapter 2…Page 31 Chapter 3…Page 61 Chapter 4…Page 78 Chapter 5…Page 142 Works Cited…Page 164 1 Chapter 1 In almost every study, article, book or memoir of autism that I have read in the past decade and a half in personal and academic research on autism spectrum disorders, the opening section of that text is spent defining what autism is, why it is a problem, how it is a problem, on what level it is problematic. Sometimes they begin with a vignette, a technique I also considered for this introduction. A sympathetic character, often a child, usually male, and some problematic, abnormal, atypical behavior that sets him apart from his family, from making friends. He is rendered dependent, feminized, impotent, yet unpredictable and potentially dangerous, with no or limited sense of the future, for himself or on behalf of his self by significant others, usually parents. Always within the first section, chapter, what have you, autism is defined, and defined as a problem or disorder. Always a what is autism; always a who is autism. What is autism? Autism is a problem of personhood, a problem of marginalization of a group or class of people based upon divergent expectations of what constitutes the human. I originally set out to document autistic subjectivity and autistic activism, but a significant disjuncture happened while writing, leading me to instead refocus on questions of personhood in relation to gender and violence instead of organizing and social movements. I seek to understand identity, social relations, genders and affect around autism. Who is autism? My participants were members of autistic run spaces that offered social support, cultural activities, and self-advocacy. They were foremost, however, adults, making their ways in the world and were of this world. These are my non-answers to those non-questions. By the end of this chapter, in which I will set up the project of my dissertation, locate it in a historical and cultural context, and summarize the arguments to come, I will come to a definition of autism. However, I will not do so before 2 examining the problematic ways in which autism has been defined, especially in relation to my group of study, adults who identify or are identified as on the autism spectrum. And instead of starting with a sympathetic character, I will start with myself. Confession According to Michel Foucault (1978), the power is the resonance of the confessional. Confess the truth of the self, submit one’s self to the medical gaze, and emerge knowing the self’s location, a diagnosis, better able to manage the self as a product of psychiatric power. And so I start here with a confession: I was diagnosed with Asperger’s Syndrome at age 18, after a long history of learning and affect related diagnoses in childhood and adolescence. The relevance of the truth of my diagnosis is, overall, I think, quite small and simultaneously immense. Relative to my ability to analyze, understand, and interpret my ethnographic scene, I actually think it is small. Any properly trained ethnographer should be able to enter a scene of dramatically different cognitive styles, and adapt to find the truth or truthiness of a given culture. Culture is engraved upon our neurology and cognition (Bourdieu,1979/1984 ), after all, and socialization and cultural difference produce different pathways for perception, cognition, and sociality within the brain. At the same time, my access to my field sites was essentially predicated on the basis of having a diagnosis. Because of how researchers have historically (mis)treated those with autism, there is a healthy degree of skepticism for those in academe studying these groups (which I will hopefully demonstrate imminently in this chapter). There is an ironic relationship between researchers, both medical and non, and those in the communities I studied. As I will discuss later in chapter 3, autistics are dependent upon medical professionals for legitimizing diagnoses of and identities as autistic. At the same time, however, as much as 3 individuals rely upon these gatekeepers, and the community relies upon them as gatekeepers, the community itself shields itself from outsiders to prevent exploitation. I earned my trust as a researcher by documenting my diagnosis, by being a participant in two of the three groups of study, in two of four locations, prior to engaging in research, as well as other outlets of autistic culture (such as list servs, on two of which I was an active participant as a college student and thus known to organizers of the various groups and locations). My intellectual engagement with autism does not arise merely from my own diagnosis, though my history with diagnosis and being in the world as autistic certainly inform my intellectual curiosities. It was instead a moment of interpellation, during my undergraduate course on social psychology. Early in the semester, we watched a film on the “wild boy of Aveyron” as part of discussing theories of socialization, the failure to socialize producing the phenomenon of feral children. Both the cinematic depiction of Victoire as well as the actual documentary footage of severely neglected children struck me as reminiscent of severely autistic behavior, including lack of eye contact, perseverative and self-stimulating behavior, and difficulties with symbolic language. The children over attenuated to sensory-perceptual inputs and were unable to attend to information at different levels, ignoring background information or foregrounding other information. Perhaps, I thought, autism is cause by an interruption to the process of socialization. This notion of interrupted socialization is not exactly uncommon in autistic developmental literature, but it isn’t the dominant theory by far.