UCSF UC San Francisco Electronic Theses and Dissertations Title Anticipating Autism: Navigating Science, Uncertainty, and Care in the Post-Genomic Era Permalink https://escholarship.org/uc/item/3h13w1wf Author Lappe, Martine Danielle Publication Date 2012 Peer reviewed|Thesis/dissertation eScholarship.org Powered by the California Digital Library University of California Anticipating Autism: Navigating Science, Uncertainty, and Care in the Post-Genomic Era by Martine Danielle Lappe DISSERTATION Submitted in partial satisfaction of the requirements for the degree of DOCTOR OF PHILOSOPHY in Sociology in the GRADUATE DIVISION of the UNIVERSITY OF CALIFORNIA, SAN FRANCISCO Copyright 2012 by Martine Danielle Lappé ii ACKNOWLEDGEMENTS This dissertation would not have been possible without the generosity and support of many people. I want to especially thank the parents, scientists and advocates who shared their experiences and perspectives with me, answering my questions with patience and candor. This research would not have been possible without them. I also owe a debt of gratitude to the coordinators and staff of the epidemiologic study I followed. I want to thank Kristine Wise and McKenzie Oliver in particular, for going above and beyond to help facilitate my research. I have been very fortunate to have an incredibly thoughtful, generous and inspiring dissertation committee to guide me through this process. My chair Adele Clarke has been a trusted resource and caring advisor. Her mentorship has nourished my thinking and supported this project from its beginning. I am particularly grateful to her for helping me make important theoretical and empirical connections, and for always asking thought-provoking questions. This dissertation would not have been possible without her incredible balance of cheerleading and encouragement, cultivated over an inspiring career. Janet Shim has been a generous mentor and thoughtful editor. She was the chair of my Third Area Qualifying Exam and I have had the opportunity to work with and learn from her as well. Her candid advice, keen eye, and unwavering support helped me through every step of this process. Chloe Silverman has been gracious and thoughtful, bridging the physical distance between California and Pennsylvania with timely emails and phone conversations. Her scholarship has been an inspiration for my thinking about autism, science and society. I am incredibly grateful to have had the opportunity to learn from such a warm, caring and brilliant group of scholars. iii I want to acknowledge a number of funding sources that supported my research. These include the University of California, Toxic Substances Research and Teaching Fellowship, the University of California, San Francisco Dean’s Health Sciences Award, the Department of Social and Behavioral Sciences Andrews Scholarship, Anselm Strauss Dissertation Research Award and Virginia Olesen Dissertation Research Award, and the Diana Forsythe Dissertation Award for Social Studies of Science, Technology and Health. The faculty and staff of the Department of Social and Behavioral Sciences at University of California, San Francisco, have been very supportive throughout my time in the program. I want to thank the professors who taught our core courses, and Linda Tracy, Cynthia Mercado-Scott, Regina Gudelunas and Brandee Woleslage, for helping with countless technical and administrative tasks and always being so kind. I also want to thank Holly Tabor, Mildred Cho and the Center for Integration of Research on Genetics and Ethics (CIRGE) at Stanford University for supporting my early research and thinking on this topic. Holly Tabor became a trusted colleague and friend, whose professional and personal perspective taught me so much. Her encouragement and support gave me the confidence to follow my interests in autism science and mothers’ experiences in particular. CIRGE supported my travel and registration costs for several national and international conferences on autism science. Sharon Kaufman provided feedback on my writing and facilitated two fabulous writing groups. Her thoughtful perspective helped build my confidence as a writer and scholar, and for that I am forever grateful. I also owe a debt of gratitude to Joe Dumit, who gave me the opportunity to teach for Department of Science and Technology Studies at University of California, Davis and always provided a fresh perspective on my work. He has also supported a iv wonderful community of science and technology studies scholars in Northern California that I have been very fortunate to be a part of. I could not have accomplished this goal without my colleagues and cohort, many of whom have become very close friends of mine. Krista Sigurdson, Kate Darling and Erica Solway have been trusted confidants whose friendship and encouragement kept me going from the early years of our program to the very end. Katie Ann Hasson and Emily Smith Beitiks became the most wonderful, caring and supportive working group I could have ever dreamed of, providing daily cheerleading, on going support and shoulders to lean on throughout the writing process. We truly did this together, and I cannot thank them enough for being my academic allies and close friends throughout. Thank you to my fabulous writing partner, Jade Sasser, whose wonderful writing and thoughtful feedback helped me with every chapter of this dissertation. I also want to acknowledge to Anastasia Kayiatos, Eric Plemons, Theresa MacPhail and James Battle for their friendship and support; and Jennifer Singh, Rachel Washburn, Kat Thomson, Carrie Friese and Sara Shostak for their words of wisdom and perspective over the years. I would never have made it through this experience without an incredible group of friends. Lacy Caruthers, Cha Caruthers, Katy Koerber, Carrie Fafarman, Aaron Fafarman, Deborah Karasek, Julia Goodman, Jean Schenkkan, and many others have made my time in graduate school a joy, filled with fun, laughter and comfort. I want to extend a very, very special thank you to Hillary Mills and Claire Hawley, for being my roommates and best friends, for lending me the Honda and training me for a marathon, for afternoon snacks and dance parties in our kitchen, for inspiring me with their commitment to their students and colleagues, and for being there for me every single step v of this journey. I could not have done this, or enjoyed myself as much while doing it, without them. I also want to thank my amazing family, whose love and encouragement provided me the strength and confidence to accomplish this goal and keep on going. Thank you to my step-mom Jackie Lappé, for always being there for me and our family, for her love and perseverance, and for creating a space for me to come home to write, rest and gain perspective whenever I needed it. Thank you to my wonderful siblings – Anna Lappé, Anthony Lappé, Matt Lappé, Gina Lappé, Danielle Spoor, Sasha Spoor, and Lisa Chiladakis – whose love, encouragement and reassurance supported me through this process. They have been my lifelines, keeping me laughing and smiling, and providing glimpses at the world beyond my dissertation along the way. I am very fortunate to have such a loving and supportive family. I also want to thank Candy Lodge, Margaret Holub and Mickey Chalfin, for opening their homes to me and always being so generous. Finally, I want to thank Noah Chalfin… for everything. There are no words to express how grateful I am for his loyalty and patience, his perspective and his confidence in me. He has been my rock throughout this process, filling my life with love and laughter, reminding me to be kind to myself and helping me take things one step at a time. I could not have done this without him. DEDICATION This dissertation is dedicated to my parents, Marc Alan Lappé and Nichol Elizabeth Lovera. They did not live to see me accomplish this goal, but were there with me in so many ways on this journey. Their words of wisdom and the way they lived with love, passion and patience gave me the foundation for everything I have become and will vi be. I continue to be inspired by their lives, by my father’s commitment to asking important questions, his ability to answer those questions, his creativity and his devotion to family, by my mother’s artistry and brilliance, her passion and persistence, and her love for her family and friends. They taught me so much, and I continue to learn from them every day. This dissertation is dedicated to my mother and father, for inspiring me. vii ABSTRACT Anticipating Autism: Navigating Science, Uncertainty, and Care in the Post-Genomic Era By: Martine Danielle Lappé In the United States, diagnosed cases of autism have increased more than ten fold over the past four decades. This dramatic change has become the source of considerable controversy, raising questions about what lies behind these rising numbers. These debates have spurred new directions in research on the causes of autism, including epidemiologic studies focused on environmental factors and gene-environment interactions. This dissertation provides a sociological study of the emergence, practices, and consequences of autism gene-environment interaction research. Using participant observation, document analysis, and interviews with scientists, advocates and mothers of children diagnosed with autism, I argue that autism gene-environment interaction research is situated within a larger social and scientific process I call anticipating autism. Building on scholarship in medical sociology, science and technology