Autism Entangled – Controversies Over Disability, Sexuality, and Gender in Contemporary Culture

Total Page:16

File Type:pdf, Size:1020Kb

Autism Entangled – Controversies Over Disability, Sexuality, and Gender in Contemporary Culture Autism Entangled – Controversies over Disability, Sexuality, and Gender in Contemporary Culture Toby Atkinson BA, MA This thesis is submitted in partial fulfilment of the requirements for the degree of Doctor of Philosophy Sociology Department, Lancaster University February 2021 1 Declaration I declare that this thesis is my own work and has not been submitted in substantially the same form for the award of a higher degree elsewhere. Furthermore, I declare that the word count of this thesis, 76940 words, does not exceed the permitted maximum. Toby Atkinson February 2021 2 Acknowledgements I want to thank my supervisors Hannah Morgan, Vicky Singleton, and Adrian Mackenzie for the invaluable support they offered throughout the writing of this thesis. I am grateful as well to Celia Roberts and Debra Ferreday for reading earlier drafts of material featured in several chapters. The research was made possible by financial support from Lancaster University and the Economic and Social Research Council. I also want to thank the countless friends, colleagues, and family members who have supported me during the research process over the last four years. 3 Contents DECLARATION ......................................................................................... 2 ACKNOWLEDGEMENTS ............................................................................. 3 ABSTRACT .............................................................................................. 9 PART ONE: ......................................................................................... 11 Chapter 1: Introduction ................................................................................ 12 Introductory Remarks ....................................................................................................... 12 Autism ............................................................................................................................... 12 Historical and Sociological Study ...................................................................................... 15 Autism, Gender, and Sexuality ......................................................................................... 17 Research Focus ................................................................................................................. 18 Research Approach ........................................................................................................... 20 Chapter Outline ................................................................................................................ 29 Chapter 2: In Theory ..................................................................................... 35 Introductory Remarks ....................................................................................................... 35 Disability Studies ............................................................................................................... 36 The Social Model .............................................................................................................. 37 Issues with Impairments ................................................................................................... 40 The Social Relational Model ............................................................................................. 42 4 Disablism and Ableism ...................................................................................................... 44 Internalised Ableism and Psycho-emotional Disablement .............................................. 45 Relevance of Disability Studies to Autism ........................................................................ 46 Feminist Anti-essentialism and Intersectionality ............................................................. 50 Feminist Theory In Relation to Autism ............................................................................. 53 Queer Theory .................................................................................................................... 56 Queer Theory’s Relevance to Studying Autism ................................................................ 59 Theoretical Syntheses-Gender, Sexuality and Disability .................................................. 60 Gender and Disability ....................................................................................................... 61 Queer and Crip .................................................................................................................. 62 Entanglements of Disability, Sexuality, and Gender Applied to Autism .......................... 67 Concluding Remarks ......................................................................................................... 71 Chapter 3: What Is Autism? .......................................................................... 72 Autism-From Diagnosis to Critique .................................................................................. 72 From Schizophrenia To Autism-Early 20th Century .......................................................... 74 Parental Problems-Mid 20th Century ................................................................................ 74 Observations on the First Autism and Its Legacies ........................................................... 77 New Paths-Late 20th Century ............................................................................................ 79 Mindblindness and the Extreme Male Brain-21st Century Autism ................................... 80 Neurodiversity-A New Paradigm ...................................................................................... 83 5 History of a Term, History of a Movement ....................................................................... 84 Mourning .......................................................................................................................... 86 Neurodiversity Groups ..................................................................................................... 87 Mindblindness and Double Empathy ............................................................................... 88 Neuroqueer ...................................................................................................................... 89 What is Autism To Me? .................................................................................................... 90 Relevance of Gender and Sexuality .................................................................................. 94 Concluding Remarks ......................................................................................................... 96 PART TWO: ........................................................................................ 98 Chapter 4: Autism Within and Against Self-Help Literature .......................... 99 Introductory Remarks ....................................................................................................... 99 Selection of Texts ............................................................................................................ 101 Autism as Enigma............................................................................................................ 104 Self-Help Resources ........................................................................................................ 111 Autism as Myth ............................................................................................................... 126 Concluding Remarks ....................................................................................................... 133 Chapter 5: Atypical Autism ......................................................................... 135 Introductory Remarks ..................................................................................................... 135 Savants and Geeks .......................................................................................................... 138 Geek Gender and Race ................................................................................................... 141 6 Spock Sexuality ............................................................................................................... 142 A Premise With Problems ............................................................................................... 144 Atypical Heterosexuality ................................................................................................. 146 Critical Atypical ............................................................................................................... 149 Persistent Pathologisation .............................................................................................. 151 Performing Heterosexuality, Queering Atypical............................................................. 153 Sam as Geek .................................................................................................................... 156 Concluding Remarks ....................................................................................................... 159 Chapter 6: (Autistic) Childhood and Its (Gendered) Discontents ................. 163 Introductory Remarks ..................................................................................................... 163 Autism and Childhood .................................................................................................... 165 Autism and the Transgender Tipping Point ...................................................................
Recommended publications
  • Working with Students on the Autism Spectrum
    Supporting students on the autism spectrum student mentor guidelines By Catriona Mowat, Anna Cooper and Lee Gilson Supporting students on the autism spectrum All rights reserved. No part of this book can be reproduced, stored in a retrievable system or transmitted, in any form or by means electronic, mechanical, photocopying, recording or other wise without the prior permission of the copyright owner. First published by The National Autistic Society 2011 Printed by RAP Spiderweb © The National Autistic Society 2011 Chapters Introduction 3 1. Understanding the autism spectrum 4-9 2. Your role as a student mentor 10-15 3. Getting started 16-23 4. Supporting a student with Asperger syndrome to… 24-29 5. Useful resources 30-33 6. Further reading 34 7. Glossary of terms 35 1 2 Introduction These guidelines were initially prepared as a resource for newly appointed student mentors supporting students with autism and Asperger syndrome at the University of Strathclyde. This guide has been rewritten as a useful resource for any university employing and training its own student mentors, or considering doing so. Readers may reproduce the guidelines, or relevant sections of the guidelines, as long as they acknowledge the source. This new version was made possible by a grant from the Scottish Funding Council in 2009, which has supported not only this publication, but also a research project (led by Charlene Tait of the National Centre for Autism Studies, University of Strathclyde) into transition and retention for students on the autism spectrum, and the delivery of a series of workshops on this topic (jointly delivered by the University of Strathclyde and The National Autistic Society Scotland).
    [Show full text]
  • Youth with Disabilities in Law and Civil Society: Exclusion and Inclusion in Public Policy and NGO Networks in Cambodia and Indonesia
    Disability and the Global South, 2014 OPEN ACCESS Vol.1, No. 1, 5-28 ISSN 2050-7364 www.dgsjournal.org Youth with Disabilities in Law and Civil Society: Exclusion and inclusion in public policy and NGO networks in Cambodia and Indonesia Stephen Meyersa, Valerie Karrb and Victor Pinedac aUniversity of California, San Diego; bUniversity of New Hampshire; cUniversity of California, Berkeley. Corresponding Author- Email: [email protected] Youth with disabilities, as a subgroup of both persons with disabilities and of youth, are often left out of both legislation and advocacy networks. One step towards addressing the needs of youth with disabilities is to look at their inclusion in both the law and civil society in various national contexts. This article, which is descriptive in nature, presents research findings from an analysis of public policy and legislation and qualitative data drawn from interviews, focus group discussions, and site visits conducted on civil society organizations working in Phnom Penh, Cambodia and Jakarta, Indonesia. Data was collected during two separate research visits in the Spring and Summer of 2011 as a part of a larger study measuring youth empowerment. Key findings indicate that youth with disabilities are underrepresented in both mainstream youth and mainstream disability advocacy organizations and networks and are rarely mentioned in either youth or disability laws. This has left young women and men with disabilities in a particularly vulnerable place, often without the means of advancing their interests nor the specification of how new rights or public initiatives should address their transition to adulthood. Keywords: Global South; inclusive development; youth policy; disability policy; Cambodia; Indonesia Introduction The passage of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2006 was a landmark achievement that has since begun to filter down and affect the everyday lives of persons with disabilities around the globe.
    [Show full text]
  • Becoming Autistic: How Do Late Diagnosed Autistic People
    Becoming Autistic: How do Late Diagnosed Autistic People Assigned Female at Birth Understand, Discuss and Create their Gender Identity through the Discourses of Autism? Emily Violet Maddox Submitted in accordance with the requirements for the degree of Master of Philosophy The University of Leeds School of Sociology and Social Policy September 2019 1 Table of Contents ACKNOWLEDGEMENTS ................................................................................................................................... 5 ABSTRACT ....................................................................................................................................................... 6 ABBREVIATIONS ............................................................................................................................................. 7 CHAPTER ONE ................................................................................................................................................. 8 INTRODUCTION .............................................................................................................................................. 8 1.1 RESEARCH OBJECTIVES ........................................................................................................................................ 8 1.2 TERMINOLOGY ................................................................................................................................................ 14 1.3 OUTLINE OF CHAPTERS ....................................................................................................................................
    [Show full text]
  • Girls on the Autism Spectrum
    GIRLS ON THE AUTISM SPECTRUM Girls are typically diagnosed with autism spectrum disorders at a later age than boys and may be less likely to be diagnosed at an early age. They may present as shy or dependent on others rather than disruptive like boys. They are less likely to behave aggressively and tend to be passive or withdrawn. Girls can appear to be socially competent as they copy other girls’ behaviours and are often taken under the wing of other nurturing friends. The need to fit in is more important to girls than boys, so they will find ways to disguise their difficulties. Like boys, girls can have obsessive special interests, but they are more likely to be typical female topics such as horses, pop stars or TV programmes/celebrities, and the depth and intensity of them will be less noticeable as unusual at first. Girls are more likely to respond to non-verbal communication such as gestures, pointing or gaze-following as they tend to be more focused and less prone to distraction than boys. Anxiety and depression are often worse in girls than boys especially as their difference becomes more noticeable as they approach adolescence. This is when they may struggle with social chat and appropriate small-talk, or the complex world of young girls’ friendships and being part of the in-crowd. There are books available that help support the learning of social skills aimed at both girls and boys such as The Asperkid’s Secret Book of Social Rules, by Jennifer Cook O’Toole and Asperger’s Rules: How to make sense of school and friends, by Blythe Grossberg.
    [Show full text]
  • Autism & Faith Resources
    AUTISM & FAITH RESOURCES BOOKS: Autism and Spirituality: Psyche, Self, and Spirit in People on the Autism Spectrum Olga Bogdashina The author argues persuasively that the spiritual development of those on the autism spectrum is in fact way ahead of that of their neurotypical peers. She describes differences in sensory perceptual, cognitive and linguistic development that make spiritual and religious experiences come more easily to those on the autism spectrum, and presents a coherent framework for understanding the routes of spiritual development and spiritual intelligence of giftedness within this group. Using research evidence and many real examples to illustrate her hypotheses, she suggests practical ways of supporting the spiritual needs of people on the autism spectrum and their families. Autism and Alleluias Kathleen Deyer Bolduc Almost everyone knows a family that has been affected by autism. What is the role that faith plays in helping families cope? In this series of slice-of-life vignettes, God's grace glimmers through as Joel, an intellectually challenged young adult with autism, teaches those who love him that life requires a childlike faith, humility, trust, and forgiveness. A Place Called Acceptance: Ministry With Families of Children With Disabilities Kathleen Deyer Bolduc The book describes how to welcome and minister to families of children with disabilities. The author discusses theology and disability, the grief process some parents experience, and the impact of disabilities on family systems. Including People with Disabilities in Faith Communities: A Guide for Service Providers, Families & Congregations Eric Carter This book addresses how faith communities, service providers, and families can work together to support the full participation of individuals with disabilities in the faith community of their choice.
    [Show full text]
  • Download Issue
    YOUTH &POLICY No. 116 MAY 2017 Youth & Policy: The final issue? Towards a new format Editorial Group Paula Connaughton, Ruth Gilchrist, Tracey Hodgson, Tony Jeffs, Mark Smith, Jean Spence, Naomi Thompson, Tania de St Croix, Aniela Wenham, Tom Wylie. Associate Editors Priscilla Alderson, Institute of Education, London Sally Baker, The Open University Simon Bradford, Brunel University Judith Bessant, RMIT University, Australia Lesley Buckland, YMCA George Williams College Bob Coles, University of York John Holmes, Newman College, Birmingham Sue Mansfield, University of Dundee Gill Millar, South West Regional Youth Work Adviser Susan Morgan, University of Ulster Jon Ord, University College of St Mark and St John Jenny Pearce, University of Bedfordshire John Pitts, University of Bedfordshire Keith Popple, London South Bank University John Rose, Consultant Kalbir Shukra, Goldsmiths University Tony Taylor, IDYW Joyce Walker, University of Minnesota, USA Anna Whalen, Freelance Consultant Published by Youth & Policy, ‘Burnbrae’, Black Lane, Blaydon Burn, Blaydon on Tyne NE21 6DX. www.youthandpolicy.org Copyright: Youth & Policy The views expressed in the journal remain those of the authors and not necessarily those of the Editorial Group. Whilst every effort is made to check factual information, the Editorial Group is not responsible for errors in the material published in the journal. ii Youth & Policy No. 116 May 2017 About Youth & Policy Youth & Policy Journal was founded in 1982 to offer a critical space for the discussion of youth policy and youth work theory and practice. The editorial group have subsequently expanded activities to include the organisation of related conferences, research and book publication. Regular activities include the bi- annual ‘History of Community and Youth Work’ and the ‘Thinking Seriously’ conferences.
    [Show full text]
  • Autism Terminology Guidelines
    The language we use to talk about autism is important. A paper published in our journal (Kenny, Hattersley, Molins, Buckley, Povey & Pellicano, 2016) reported the results of a survey of UK stakeholders connected to autism, to enquire about preferences regarding the use of language. Based on the survey results, we have created guidelines on terms which are most acceptable to stakeholders in writing about autism. Whilst these guidelines are flexible, we would like researchers to be sensitive to the preferences expressed to us by the UK autism community. Preferred language The survey highlighted that there is no one preferred way to talk about autism, and researchers must be sensitive to the differing perspectives on this issue. Amongst autistic adults, the term ‘autistic person/people’ was the most commonly preferred term. The most preferred term amongst all stakeholders, on average, was ‘people on the autism spectrum’. Non-preferred language: 1. Suffers from OR is a victim of autism. Consider using the following terms instead: o is autistic o is on the autism spectrum o has autism / an autism spectrum disorder (ASD) / an autism spectrum condition (ASC) (Note: The term ASD is used by many people but some prefer the term 'autism spectrum condition' or 'on the autism spectrum' because it avoids the negative connotations of 'disability' or 'disorder'.) 2. Kanner’s autism 3. Referring to autism as a disease / illness. Consider using the following instead: o autism is a disability o autism is a condition 4. Retarded / mentally handicapped / backward. These terms are considered derogatory and offensive by members of the autism community and we would advise that they not be used.
    [Show full text]
  • INFORM and ACT SERIES Youth and Disability
    INFORM AND ACT SERIES Youth and Disability Addressing the challenges our youth face means taking disability into account. A strong region requires the equal opportunity, inclusion, and full participation of all residents. Disability is a natural part of the human experience. The Americans with Disabilities Act (ADA) defines disability as a physical or mental impairment that substantially limits one or more major life activities. Disabilities are both visible and invisible. Our Regional Challenge 13,000 In the Chicago region,* over 800,000 residents—approximately 11% Opportunity of the total population—report having a disability. More than 41,000 Youth are aged 16-24, and 13,000 of these are “opportunity youth” who are neither in school nor at work. Creating a path to economic self- 41,000 sufficiency and success simply will not happen if we do not address how Total our systems can use best practices to support youth with disabilities. Education System Failures Increased Disproportionate Higher 25% Suspension Rates 2X Discipline 3X Dropout Rates HIGHER Students with Youth with emotional and In Chicago Public disabilities are suspended behavioral related disabilities Schools, the dropout rate for at a rate almost double are three times more likely to be students with disabilities is that of students arrested before leaving school, 25% higher than students without disabilities. compared to all other students. without disabilities. Higher educational attainment is tied to long-term success in terms of income and employment; yet, less than 30% of youth with disabilities graduate from high school, and an even smaller percentage obtain a college degree. Low Educational Attainment for Youth With Disabilities (16-24) 41.3% 40% 29.3% 20% 6.0% Percentage Percentage of Students 0% With Disabilities Less than High School High School Bachelor’s Degree Employment Gaps While mounting evidence demonstrates that hiring this overlooked talent pool can increase productivity and reduce costly turnover, barriers persist both when seeking employment and while on the job.
    [Show full text]
  • Interdisciplinary Disability Studies
    YOUTH AND DISABILITY Interdisciplinary Disability Studies Series Editor: Mark Sherry, The University of Toledo, USA Disability studies has made great strides in exploring power and the body. This series extends the interdisciplinary dialogue between disability studies and other fields by asking how disability studies can influence a particular field. It will show how a deep engagement with disability studies changes our understanding of the following fields: sociology, literary studies, gender studies, bioethics, social work, law, education, and history. This ground-breaking series identifies both the practical and theoretical implications of such an interdisciplinary dialogue and challenges people in disability studies as well as other disciplinary fields to critically reflect on their professional praxis in terms of theory, practice, and methods. Other titles in the series Disability, Human Rights and the Limits of Humanitarianism Edited by Michael Gill and Cathy J. Schlund-Vials Disability and Social Movements Australian Perspectives Rachel Carling-Jenkins Forthcoming titles in the series Communication, Sport and Disability The Case of Power Soccer Michael S. Jeffress Disability and Qualitative Inquiry Methods for Rethinking an Ableist World Edited by Ronald J. Berger and Laura S. Lorenz Youth and Disability A Challenge to Mr Reasonable Jenny SlateR Sheffield Hallam University, UK First published 2015 by Ashgate Publishing Published 2016 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN 711 Third Avenue, New York, NY 10017, USA Routledge is an imprint of the Taylor & Francis Group, an informa business Copyright © 2015 Jenny Slater Jenny Slater has asserted her right under the Copyright, Designs and Patents Act, 1988, to be identified as the author of this work.
    [Show full text]
  • Neurodiversity: Creating an Inclusive College Classroom
    NEURODIVERSITY: CREATING AN INCLUSIVE COLLEGE CLASSROOM J O S H BURK , K A R I N WULF , C H E R Y L DICKTER , J A N I C E ZEMAN HELPFUL STRATEGIES FOR OUR UTP • Reviewing the literature • Assess group of interest • Assess impact of any manipulation, teaching strategy, etc. WHAT IS NEURODIVERSITY? • Neurodiversity is a philosophy that emphasizes differences in human neurologies. • Neurodiversity emphasizes that Autism and ADHD, for example, represent difference rather than deficits. • Neurodiversity invokes an emerging disability rights/ civil rights movement. NEURODIVERSITY WWW.WM.EDU/NEURODIVERSITY • At W&M, The Neurodiversity Initiative seeks first to serve our campus community and ultimately to be a model for other campuses. • The Neurodiversity Working Group works to foster an inclusive campus culture, and organizes campus events and programs. • The Working Group also produces and supports resources for students, faculty, and staff. WHY NEURODIVERSITY? • More students in • It’s the right and college with learning good thing to do. differences, (Human rights including autism. perspective) • More W&M students needing support. • Our community is • We can offer enriched by diversity. effective, evidence- (Maximizing human based support (ex.: capital perspective) “The Hidden Rules of Seminars.” WHAT IS AUTISM? • Autism is one form of neurological difference that we see on campus, although it is often combined with ADHD. • Autism Spectrum Disorders are marked by social and communication difficulties. Autistic people have more challenges
    [Show full text]
  • Connections Between Sensory Sensitivities in Autism
    PSU McNair Scholars Online Journal Volume 13 Issue 1 Underrepresented Content: Original Article 11 Contributions in Undergraduate Research 2019 Connections Between Sensory Sensitivities in Autism; the Importance of Sensory Friendly Environments for Accessibility and Increased Quality of Life for the Neurodivergent Autistic Minority. Heidi Morgan Portland State University Follow this and additional works at: https://pdxscholar.library.pdx.edu/mcnair Let us know how access to this document benefits ou.y Recommended Citation Morgan, Heidi (2019) "Connections Between Sensory Sensitivities in Autism; the Importance of Sensory Friendly Environments for Accessibility and Increased Quality of Life for the Neurodivergent Autistic Minority.," PSU McNair Scholars Online Journal: Vol. 13: Iss. 1, Article 11. https://doi.org/10.15760/mcnair.2019.13.1.11 This open access Article is distributed under the terms of the Creative Commons Attribution-NonCommercial- ShareAlike 4.0 International License (CC BY-NC-SA 4.0). All documents in PDXScholar should meet accessibility standards. If we can make this document more accessible to you, contact our team. Portland State University McNair Research Journal 2019 Connections Between Sensory Sensitivities in Autism; the Importance of Sensory Friendly Environments for Accessibility and Increased Quality of Life for the Neurodivergent Autistic Minority. by Heidi Morgan Faculty Mentor: Miranda Cunningham Citation: Morgan H. (2019). Connections between sensory sensitivities in autism; the importance of sensory friendly environments for accessibility and increased quality of life for the neurodivergent autistic minority. Portland State University McNair Scholars Online Journal, Vol. 0 Connections Between Sensory Sensitivities in Autism; the Importance of Sensory Friendly Environments for Accessibility and Increased Quality of Life for the Neurodivergent Autistic Minority.
    [Show full text]
  • The Diagnosis of Autism: from Kanner to DSM‑III to DSM‑5 and Beyond
    Journal of Autism and Developmental Disorders https://doi.org/10.1007/s10803-021-04904-1 S:I AUTISM IN REVIEW: 1980-2020: 40 YEARS AFTER DSM-III The Diagnosis of Autism: From Kanner to DSM‑III to DSM‑5 and Beyond Nicole E. Rosen1 · Catherine Lord1 · Fred R. Volkmar2,3 Accepted: 27 January 2021 © The Author(s) 2021 Abstract In this paper we review the impact of DSM-III and its successors on the feld of autism—both in terms of clinical work and research. We summarize the events leading up to the inclusion of autism as a “new” ofcial diagnostic category in DSM-III, the subsequent revisions of the DSM, and the impact of the ofcial recognition of autism on research. We discuss the uses of categorical vs. dimensional approaches and the continuing tensions around broad vs. narrow views of autism. We also note some areas of current controversy and directions for the future. Keywords Autism · History · Dimensional · Categorical · DSM It has now been nearly 80 years since Leo Kanner’s (1943) frst described by Kanner has changed across the past few classic description of infantile autism. Ofcial recognition of decades. When we refer to the concept in general, we will this condition took almost 40 years; several lines of evidence use the term autism, and when we refer to particular, ear- became available in the 1970s that demonstrated the valid- lier diagnostic constructs, we will use more specifc terms ity of the diagnostic concept, clarifed early misperceptions like autism spectrum disorder, infantile autism, and autistic about autism, and illustrated the need for clearer approaches disorder.
    [Show full text]