University of California Santa Cruz on the Spectrum
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UNIVERSITY OF CALIFORNIA SANTA CRUZ ON THE SPECTRUM: AUTISTICS, FUNCTIONING, AND CARE A dissertation submitted in partial satisfaction of the requirements for the degree of DOCTOR OF PHILOSOPHY in HISTORY OF CONSCIOUSNESS by Matthew John Moore June 2014 The Dissertation of Matthew Moore is approved: Distinguished Professor Emeritus James Clifford, Chair Distinguished Professor Emerita Donna Haraway Professor Emerita Adele Clarke Tyrus Miller Vice Provost and Dean of Graduate Studies Copyright © by Matthew J. Moore 2014 Contents List of Figures iv Abstract v Acknowledgments vii Introduction On the Spectrum: Autistics, Functioning, and Care 1 Chapter One Human Kind(s) in Motion: Articulations and 28 Idioms of Biosocial Becoming Chapter Two Beside the Autism Wars: Navigating an Epidemic 80 Chapter Three Meetings: Wrestling with Spectra 139 Chapter Four Critical Studies of Autism, Or: How I Learned to 205 Stop Worrying and Love Neuro-essentialism Conclusion Situated Functioning: Facilities and Difficulties 259 References 288 iii List of Figures 96 A 6,000% Increase in Autism 128 CDC: 1 in 68 Children 129 The Cost of Autism 133 Innovative Models for Funding: Working beyond the science to deliver the science 187 Cerebrum: Brains and Dollars 188 Psychiatry as a Clinical Neuroscience 228 Neurodiversity: A Symposium 263 Autism Parenting Magazine: Exposing Autism Speaks iv Abstract On the Spectrum: Autistics, Functioning, and Care Matthew J Moore University of California Santa Cruz On the Spectrum explores the recent flourishing of autistic self-advocates as social actors, stakeholders, and co-creators of autism worlds. In the contentious and contradictory discourses surrounding autism, it considers ways that all participants – medical practitioners, researchers, educators, parents, and autistics – are interested actors. To understand how and why autism worlds both overlap and diverge, contemporary concerns are examined in terms of inherited legacies from earlier historical ‘turns.’ In recent decades, an autism ‘spectrum’ and ‘epidemic’ emerged together as some parent-advocates redirected efforts toward development of biomedical treatments. Autistic self-advocacy simultaneously emerged as a social movement, where previously there had been virtually no recognizably autistic voices heard publicly. Self-advocates locate themselves in relation to powerful discourses shaped by psychiatry, bio-medicine, and “cure autism now” parent advocacy organizations. Rather than minimize the distance between what have come to be known as pro-cure and pro-acceptance (or neurodiversity) positions, On the Spectrum sustains the tension as necessary for movement toward a re- articulation of contentious encounters. The analytic work is grounded by engagement with autistic self-advocates and participant-observation at autism conferences. Professional, community, and policy meetings are described as important sites of negotiation where public discourses reflect v multiple personal and ontological commitments. Actors engage one another in an effort to reformulate ways of talking about and living with autism, understood variously as disease, disability, and difference. A theoretical framework is assembled to consider how autism simultaneously exists as a behavioral disorder and biomedical disease, alongside emergent formulations of autism and autistic personhood which are significantly depathologized. It shows how autism becomes recognizable as a diagnostic category, boundary object, cultural resource, and biosocial entanglement. In the conclusion, an idiom of situated functioning is proposed as a way to rethink normative assessment practices, where notions of intelligence and functioning are understood to be personal qualities and contained fully within individuals. In contrast to how autistic populations are typically labeled as either high-functioning or low- functioning, a non-binary twining of facilities and difficulties productively disrupts the tendency to talk and think about assessment as locating fixed attributes and the upper limits of individual potential. vi Acknowledgments I want to thank my wonderful advisers and committee members: James Clifford, Donna Haraway, Kimberly Lau, Susan Leigh Star, and Adele Clarke. Jim and Donna have been with me since the beginning and my gratitude to both is immeasurable. Both Donna’s and Adele’s thinking are evident throughout the dissertation, but I want to acknowledge here the way the two worked together to ensure that Leigh Star influenced the project from start to finish. I hope Leigh is proud of this work. Stacy Kamehiro provided support in a variety of ways during my studies, especially facilitating my growth as a teacher. And Paula Holtz helped me find my way, as well. My grad student colleagues offered steady inspiration and I want to acknowledge in particular: Raissa DeSmet Trumbull, Cindy Bello, Robert Trumbull, Adam Hefty, Kris Weller, Lindsey Collins, Sandra Koelle, and Harlan Weaver. I wish I could describe the entire spectrum of support my family provided even at times my progress was not discernible to them. Both of my parents – Bert Moore, Ph.D. and Joy Williams Schilling, Ph.D. – have contributed meaningfully to the thinking represented here. It was only with my mother’s assistance that I was able to meet institutional deadlines and express ideas as well as I have. I marvel at the lengths both my mom and dad have gone to help me accomplish my goals. Some of my extended family I see daily while others cross oceans to visit. All have been there for me: Dru Sherrod, Arden Reed, Lynne Kirk, Glen Schilling, Kory Kirk, Anne Kirk, Wendy Schilling, John Moore, and Linda and Peter Barter. Special gratitude is reserved for Hai Ho and Ngọc Anh Nguyễn who have been working so hard and loving their grandkids so well. vii Maichi Thi Ho is simply a remarkable person and I am truly fortunate to have her in my life. Graduate school was more than we bargained for when we began the journey together, and I hope the extra time I needed benefits our family. I like to imagine that all the writing might make a difference for our children, Reef and Curren, as well as the social worlds they come to inhabit. I didn’t foresee how much I would learn from autistic self-advocates about how to accept and work with my own difficulties. I know better now how to stick with the trouble and identify areas where I benefit from additional support. Thank you. viii Introduction On the Spectrum: Autistics, Functioning, and Care Colette in Transition As far as I know, the first person with an autism diagnosis I met was in early 2001 while substitute teaching in the San Francisco Unified School District. The autistic woman, whom I refer to as Colette, was nineteen-years-old at the time. When I met Colette she had already received her certificate of high school completion. Legally, however, she was considered an “incompetent” under the guardianship of her mother. She continued to receive educational services from the public school system as part of the Community Access and Transition (CAT) program for young adults labeled with moderate to severe disabilities – a program designed to teach life-skills so that persons with cognitive disabilities would be able to live as fully and independently as possible. A month earlier, I had earned my master’s in education and an elementary school teaching credential from San Francisco State University. My “general ed” teaching credential only included one course on how to include students with special needs. I can’t say that I learned anything specifically about autism in my studies. My knowledge of autism did not extend much beyond what I learned from Dustin Hoffman in Rain Man. I reported to the CAT classroom on a brisk January morning, located in a high school even though the students were not considered to be in high school anymore. It was difficult to get oriented. When I came in, there was another, preoccupied, teacher in the classroom and more paraprofessional staff, a.k.a. “paras,” than I had ever seen before 1 in one place. They gave curt greeting but no one made introductions or offered instructions. Everybody looked busy. I later learned unfamiliar “subs” were considered more hindrance than useful, an extra person needing direction. I initially thought I had walked into the break room by accident, because it was not immediately evident to me who were students and who were staff. Mainly Colette stands out from that first day. Moments after I came in, Colette’s mother brought her into the room, saw me, and asked me to sit with Colette. As Colette and I sat down side-by-side, her mother warned me to be careful of my eyeglasses because Colette liked to snatch at them. I have good peripheral vision and what I consider pretty quick reflexes, but as I turned my head slightly to watch her mother walk to the front of the classroom, Colette swiped my glasses and flung them across the room. Just like that. Didn’t touch my face at all. Quite a surprise, despite her mother’s warning. I remember that being caught so thoroughly off-guard, only seconds after such an explicit warning, made me laugh out loud. The paras were quick to see if I was all right and scolded Colette profusely. My usual non-intrusive way of interacting fit in well with the program, and I quickly became the go-to sub. The classroom had two credentialed teachers and five paras, all of whom I would substitute for, so I quickly began spending a substantial number of my sub days with this in CAT. I became a regular presence, especially because more than once someone needed to take an extended leave of absence. We constantly talked about “going out in the community,” where students and staff dispersed for the majority of each day. That space, outside the school environment, represented our goal for social participation. Out in the community was where we 2 imagined full, maximally independent personhood would be achieved.