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Building Community Among Autistic Adults DISSERTATION Submitted In UNIVERSITY OF CALIFORNIA, IRVINE Voices of Belonging: Building Community Among Autistic Adults DISSERTATION submitted in partial satisfaction of the requirements for the degree of DOCTOR OF PHILOSOPHY in Anthropology by Heather Thomas Dissertation Committee: Associate Professor Keith M. Muprhy, Chair Professor Victoria Bernal Professor Tom Boellstorff 2018 © 2018 Heather Thomas DEDICATION To my mentors, loved ones, and colleagues "Everyone has his or her own way of learning things," he said to himself. "His way isn't the same as mine, nor mine as his. But we're both in search of our Personal Legends, and I respect him for that." Paulo Coelho, The Alchemist ii TABLE OF CONTENTS Page ACKNOWLEDGMENTS v CURRICULUM VITAE vi ABSTRACT OF THE DISSERTATION ix INTRODUCTION 1 Research Problem 3 Background 4 Research Sites 17 Methods 23 CHAPTER 1: Autistic Narrative 28 What Autistic Narratives Do for Autistic Adults 33 Disability Narratives 36 The Spectrum 45 Narrative and Identity Making 50 Group Identification and Disidentification 64 Conclusion 70 CHAPTER 2: Rhetorical Characters of Autisticness 71 Characterizing Autisticness 79 Prospective Members' Goals 81 Diversifying the Autistic Cast 83 Creating an Intersectional Space 105 Conclusion 112 CHAPTER 3: Learning to Be Autistic 109 Autistic Teachers & Autistic Students 121 Lateral Engagements 149 Conclusion: Autistic Proof Spaces 164 CHAPTER 4: Disidentification 158 Labelling & the Reality of a "Disorder" 170 Risky Formerly-Autistic Subjects 179 Countering Certified Autism Experts 183 Anti-Psychiatry in Disidentifiers' Narrative Revisioning 186 Reclassified Neurodivergence 192 Conclusion 199 CONCLUSION 192 iii REFERENCES 199 APPENDIX A: Key Interlocutors & Their Groups 210 APPENDIX B: Glossary 212 iv ACKNOWLEDGMENTS I am deeply grateful for each member of my dissertation committee. Professors Keith M. Murphy, Tom Boellstorff, and Victoria Bernal, I have treasured your guidance, kindness, patience, and steadfast support. You've inspired me and helped me see this project through to completion. Professors Bill Maurer, Valerie Olson, Julia Elyachar, Kris Peterson, and Gillian Hayes: your scholarship, teaching, and willingness to brainstorm with me have been instrumental on this journey. Thank you. My interlocutors and friends from my research sites, I so appreciate your willingness to welcome me into your group spaces and lives. This research could not have happened without you. I am eternally grateful for my parents, Hilary and Rodney Thomas; my siblings, Tecoya, Jerrel, and Melissa; my nephew and niece, Nolan and Mikayla. You've held loving space for me, encouraged me ceaselessly, and reminded me of what I treasure most. Thank you for sharing your love with me. Without my mentor and friend, Taylor Nelms, I would not have embarked on this journey. Thank you, Taylor, for believing in me. And thank you for sharing your love of anthropology. My amazing colleagues and friends: Eva Yonas, Justin Perez, Megan Neal, Kimberley McKinson, Daina Sanchez, Nathan Coben, Sean Mallin, Josef Weiland, Emily Brooks, Simone Popperl, Leah Zani, and Cassandra Hartblay. Thank you all for your generosity and kindness. Thank you, Michael Briante, for your encouragement and support, and for celebrating the completion of this research project and graduate school journey with me. Financial support for this project was provided by the NSF Doctoral Dissertation Research Improvement Grant (#1558543), NSF Graduate Research Fellowship Program, and Department of Anthropology at the University of California, Irvine. v CURRICULUM VITAE EDUCATION 2018 Ph.D. in Anthropology, University of California, Irvine Dissertation: Voices of Belonging: Building Community Among Autistic Adults 2013 M.A. in Anthropology, University of California, Irvine 2010 B.A. in Political Science, University of California, Irvine TEACHING EXPERIENCE 4/2018 – 6/2018 Teaching Assistant for Social Science 3A, Computer Research in the Social Sciences with Dr. Paul Shirey 1/2018 - 3/2018 Teaching Assistant for Anthropology 2D, Language and Culture with Professor Keith M. Murphy 9/2017 – 12/2017 Teaching Assistant for Linguistics 1, World Languages with Dr. Arunima Choudhury 4/2017 - 6/2017 Teaching Assistant for Anthropology 129E, Conspiracy Theories with Dr. William Dewan 1/2017 - 3/2017 Teaching Assistant for Political Science 21A, Introduction to American Government with Professor Michael Tesler 9/2016 – 12/2016 Teaching Assistant for Anthropology 134A, Medical Anthropology with Dr. Angela Jenks 4/2013 – 6/2013 Teaching Assistant for Anthropology 2A, Introduction to Cultural Anthropology with Professor Victoria Bernal 4/2013 – 6/2013 Teaching Assistant for Anthropology 2A, Introduction to Cultural Anthropology with Professor Victoria Bernal 1/2013 – 3/2013 Teaching assistant for Anthropology 2A, Introduction to Anthropology with Professor Leo Chavez 9/2012 – 12/2012 Teaching Assistant for Anthropology 2B, Biological Anthropology with Dr. James Egan FELLOWSHIPS, GRANTS, AND AWARDS vi 2016 National Science Foundation, Doctoral Dissertation Research Improvement Grant 2015 Associated Graduate Students Travel Award 2014 Society for Disability Studies Conference Travel Award 2013 UC Irvine Department of Anthropology Summer Research Grant 2012 UC Irvine Department of Anthropology Summer Research Grant 2012 National Science Foundation, Graduate Research Fellowship Program 2011 UC Irvine Department of Anthropology Fellowship PRESENTATIONS 12/2017 "Brain Weird and on the Wrong Planet: Autistic Community, Neurodiversity, and Sci-Fi Fandom," presented at the Annual Meeting of the American Anthropological Association, 2 December 2017. Washington D.C. 11/2016 "Queer Spectrums of Autism," presented at the Annual Meeting of the American Anthropological Association, 18 November 2016. Minneapolis, MN. 11/2015 “Approaching Accessibility: Engaging the Field in Disabled Ethnography,” presented at the Annual Meetings of the American Anthropological Association, 11 November 2015. Denver, CO. 6/2015 “Sensory Others and Other Senses,” Presented at the 2015 Society for Disability Studies Conference, Atlanta, GA. 6/2014 “Envisioning Autisticness: Generative Imaginings in an Online Autistic Community,” presented at the 2014 Society for Disability Studies Conference, Minneapolis, MN. WORK EXPERIENCE 2015 – 2018 Editor-in-Chief, Graduate Student Journal, Trans-Scripts 2015 – 2018 Board Member, Autism Women’s Network 2014 – 2018 Consultant, UC Irvine School of Social Sciences, Grant Review Committee 2014- 2018 Co-chair, Disability Research Interest Group American Anthropological Association 2013 – 2015 Editor, Graduate Student Journal, Trans-Scripts vii 2006 - 2011 Behavior Specialist, Saddleback Valley Unified School District, Mission Viejo, California CONFERENCE PANELS ORGANIZED Chair and organizer of the Society for Humanistic Anthropology invited session, “Accessing the Field in Anthropological Studies of Disability,” 114th Annual Meetings of the American Anthropological Association, 11 November 2015. Denver, Colorado. JOURNAL ARTICLES Thomas, Heather, "Storying Autism." Composition Forum 39.1 (2018). https://www.compositionforum.com/issue/39/storying.php Thomas, Heather and Tom Boellstorff, “Beyond the Spectrum: Rethinking Autism.” Disability Studies Quarterly 37.1(2017). ISSN: 2159-8371. PROFESSIONAL AFFILIATIONS American Anthropological Association Society for Disability Studies viii ABSTRACT OF THE DISSERTATION Voices of Belonging: Building Community Among Autistic Adults By Heather Thomas Doctor of Philosophy in Anthropology University of California, Irvine, 2018 Professor Keith M. Murphy, Chair This research project is an ethnographic study of the communication technologies and social practices that enable the formation and maintenance of community among adults with autism, a group that is widely dispersed across online and offline spaces. This study focuses on adults who self-identify as autistic people and explicitly claim membership in an "autistic community." Autistic people are still typically understood to be asocial and socially uncoordinated, making the very notion of a community of autistic people, and efforts to continue its development, a significant challenge to enduring beliefs about what autism is, how it works, and how people with autism operate in the social world. This study employed ethnographic research methods, including participation in online and offline groups and spaces that autistic adults use regularly and interviews, to learn about three key things: First, this research entailed exploring how autistic community and the social practices and communication technologies that facilitate its continued development, both online and offline, demonstrated the ways various forms of expertise on autism interacted with — and were contested by — the lived experience of autism and autisticness. Second, I sought to learn what a "community" of autistic adults looked like and how it might work online and offline. Here, it was important to examine the inclusionary and exclusionary practices of the autistic spaces in which I studied. Finally, this research investigates the ways that sociocultural identity and self-knowing intersect with the ways people resist, transform, and reify the various classifications they are assigned to and accept. This study highlights the ways that cultural discourses of autism, autisticness, and normalcy shape autistic people's interactions with one another and the broader social world. ix INTRODUCTION This dissertation explores
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