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‘I’M A JUGGLING ROBOT:’ AN ETHNOGRAPHY OF THE ORGANIZATION AND CULTURE OF AUTISM-BASED APPLIED BEHAVIOUR THERAPIES IN ONTARIO, CANADA JULIA GRUSON-WOOD A DISSERTATION SUBMITTED TO THE FACULTY OF GRADUATE STUDIES IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY GRADUATE PROGAM IN SCIENCE AND TECHNOLOGY STUDIES YORK UNIVERSITY, ONTARIO AUGUST 2018 © Julia F Gruson-Wood 2018 ABSTRACT This dissertation is an ethnographic study of the culture, social organization, and everyday practices of providers and recipients of autism-based applied behavior therapies in Ontario, Canada. Autism-based applied behavior therapies are highly controversial evidence-based autism interventions that have become the standard of care, and the only guaranteed-funded services, for autistic people in this province. These therapies are provided by teachers in public autism classrooms, by parents in the home, and by personal support workers in group homes with autistic residents. The lives of many autistic people in this province, whether at school, in the home, or the community, are structured through completing behaviour therapy activities. The growing voices that resist and proliferate applied behaviour therapies, highlight the importance of critical scholarly attention to these therapies. This dissertation is situated within the fields of science studies, medical anthropology, and critical autism studies, and focuses on the experiences and practices of providers. Learning about what providers do, and how they make sense of what they do, helps to understand the professional culture in which they work, and the complex forces of power that govern both their activities and the everyday lives of autistic people in this province. For this project, I completed an ethnography, which included participant observation activities and interviews with thirty-two providers and recipients of these therapies. To understand the complex power relations that constitute everyday enactments of behaviour therapies, I combined the governance-focused approach offered by Studies in the Social Organization of Knowledge, with anthropological approaches to ethnography that focus on meaning and description. The merger of these two methods of inquiry, where cultural analysis bolsters an organizational account, enables a rich and comprehensive analysis of behaviour therapy practices. ii In my work and thinking, I am committed to an actual world. A world of social relations and experience, of human practice and activities, of embodied joys, pleasures and pains. In this world, texts are but a part of life, often for some people more than others. (Mykhalovskiy, 1996, p. 143). iii ACKNOWLEGEMENTS First, a heartfelt thank you to all the participants for this study. Your generosity with your time, work experiences, and expertise is what made this dissertation possible. Talking with each of you has changed me, and expanded my understanding of behaviour therapies and autism governance. I am forever grateful. When growing up the sibling of an autistic person, I learnt all about autism through a biomedical lens. I’ve felt so much sadness about the ways my kin has been treated and the systems for ‘treating’ her. In adulthood I encountered critical disability studies and autistic activist communities who showed me a world otherwise and taught me about ableist systems of governance. To autistic self-advocates, your hard work is life-affirming and world changing (as I’m sure you know), not only for fellow autistic people, but also for family members like me. Your resistance, resilience and ingenuity motivates and guides my work. I sincerely hope you find this study to be of some use. To my supervisor, Dr. Eric Mykhalovskiy, it is through your profound mentorship that I’ve written this dissertation. You are the most brilliant person I’ve ever met. You didn’t just teach me how to think, but taught me the most valuable work contributes to social change. You shared your knowledge and offered honesty; you gave endless time and have been my unwavering advocate. You never tried to sculpt me to follow your path; you’ve been so patient in helping me find my own. I’ve loved talking through deep thoughts and bad TV with you. All you do, and have done, has meant the world. The support and expert guidance of my committee members: Dr. Michael Pettit, Dr. Alexandra Rutherford, and Dr. Margaret MacDonald, has greatly shaped this study and made the process so positive. Mike, you helped me to think through the ethical dimensions of fieldwork, and your insights linking behaviour therapy to professional ambivalence, psy accountability and precarity, were pivotal. As an historical STS behavioural sciences expert, Alex, you were ever generous with sharing your knowledge and provided key feedback during the design and data analysis stages. Maggie, thank you for introducing me to Medical Anthropology. Your enriching teaching altered the trajectory of my scholarship. You helped me to work through the conceptual, ethical and stylistic aspects of my study, and have been encouraging all the way through. iv Michael Orsini, thank you for your impactful scholarship, and for serving as the external for my defence. It was a dream to have you engage with my work and you’ve been so giving with your time and knowledge. Your feedback pointed to vital areas requiring revising and expanding for future versions of this work. To my internal/external Miriam Smith, having your important insights at my defence was a profound privilege. Thank you to Colin Hastings and Matthu Strang of the DFU reading, writing, drinking and eating crew. Your friendship surpassed the scholarly but influenced my scholarship so significantly. Our consistent meetings gave me incentive to write and prepare for conferences. You were so helpful and gentle throughout, and especially when working through the messiest, earliest iterations of writing. Matthu, your suggestion to incorporate “deliberate tinkering” in Chapter Three was foundational. Colin, your structural suggestions for Chapter’s Two and Four were crucial. Thank you to the Science and Technology Studies Program at York University. I have benefited immensely from being part of this innovative program and learning from the students and professors alike. In particular, thank you to Dr. Bretton Fosbrook for the fun times, deep thoughts, and support. We’ve gone through this program and raising children together as queer parents, and it’s just meant so much. To Dr. Aryn Martin, Dr. Jagdish Hattiangadi, Dr. Bernard Lightman, Dr. Naomi Adelson, Dr. Natasha Myers, Dr. Anne McGuire, Dr. Jordan Bimm, Dr. Benjamin Mitchell, Bridget Liang, and Tyler Hnatuk, I deeply appreciate your scholarship and support. Lindsay Barton: thank you for basically teaching me everything. Liz Brockest and Thea Lim, you are not only two of my closest friends, but you helped enormously with this study: you listened to me practice presentations ad infinitum, and edited Chapter One (Thea) and Chapter Four (Liz). I am profoundly thankful to Project Re-Vision, particularly: Dr. Patty Douglas, Dr. Carla Rice, Dr. Ingrid Mundel, Tracy Tidgwell, Kavya Yoganathan, Hannah Fowlie, Farrah Trahan, Liz Brockest and Liz Jackson. You created such transformative and community-minded spaces for learning and knowledge production. These digital story- telling workshops were the first educational spaces I’ve experienced that welcomed the whole self into the room. It taught me the kind of scholarship I want to cultivate. Thank you to Dr. Jess Haines, Dr. Gwen Chapman, and Dr. Carla Rice, my mentors and team for my Post-Doctoral Fellowship at Guelph University. I am inspired by v each of your scholarship and thankful for your patience while completing my PhD. I’ve already learnt so much about gender and family-based health work, and about how enjoyable and rich collaborative interdisciplinary work can be. To Dr. Jill Lazenby: you’ve modeled the kind of professor and employer I hope to be. You’re a brilliant teacher, and treated me with such kindness and respect, even buying a hand-knit sweater for my baby after I stopped being your TA. Dr. Allen Weiss, it was a privilege to be your TA too. Your lectures renewed my aspirations to be a professor, reminding me of the wonder I felt in my undergrad, when all of this was new. I am endlessly appreciative for funding from the Ontario Graduate Scholarship and am indebted to the financial and academic support from the CIHR Strategic Training Initiative through the Health Care Technology and Place Fellowship. Learning from interdisciplinary mentors (particularly Dr. Jennifer Poole) and fellows in the healthcare field was an invaluable experience that not only opened my mind, but so many doors. Anne Louise Pontigon, you were a beacon of kindness guiding me through the fellowship. I am also grateful for financial support from the York University Graduate Development Fund, Conference Fund, and Fieldwork Fund. Out of this support came pivotal scholarly opportunities, including ethnographic observation at key autism conferences, and a weeklong visit to the Library and Archives of Canada. While endlessly appreciative of the incredible programs (Critical Disability Studies and Cultural Studies) I’ve been lucky enough to complete, and the excellent professors I’ve had in each degree, I would not have attended university if not S.E.E.D. Alternative High School. S.E.E.D first inspired this love of learning that now so defines my life, and instilled the confidence to pursue academia. Before S.E.E.D. I had gone through the diagnostic system, which classified me as having various Learning Disabilities, which then resulted in my placement within the “Special Education” system. I have a very thick file indicating that it would only be possible for me to achieve “normal functioning” if I were to receive a huge amount of intervention. When I got to S.E.E.D., the teachers acted as if my labels were unimportant and made me feel smart.
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