Parents Speak: An Ethnographic Study of Autism Parents Juliette de Wolfe Submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy in the Graduate School of Arts and Sciences COLUMBIA UNIVERSITY 2013 © 2012 Juliette de Wolfe All rights reserved ABSTRACT Parents Speak: An Ethnographic Study of Autism Parents Juliette de Wolfe This ethnography documents the everyday experiences of the parents of children diagnosed with autism with whom I conducted fieldwork from April 2010 through September 2011. It describes the daily activities of self proclaimed “autism parents” living in Queens, New York, who tirelessly campaign for their children’s medical, educational, and social needs. The parents described are all members of a local support group, and together, they engage in practices of self-education, advocacy, and activism. By recounting parents’ stories, this ethnography demonstrates the difficulties of the early moments of becoming an autism parent: the official diagnosis, receiving Early Intervention services, and navigating relationships with friends, family and loved ones. Through descriptive fieldnotes from the 18-month study, it also interrogates the uniqueness of parents’ circumstances as they are shaped by their children’s bodies and their own bodies, and urges the reader to think about the peculiarities of bodies and the particularities of the situations in which they find themselves. Furthermore this ethnography traces the navigational obstacles parents face as they work to secure educational and medical services for their children. Finally, the project examines the educative practices that parents engage in as they learn from each other, tell their stories to others, and work to express their experiences with autism to the world. The content presented in each chapter works to answer the question, “how does one become and be an autism parent?” by demonstrating that the paths of autism parenthood are multiple, varied, and textured – each a unique autism experience. Table of Contents Parents and Caregivers, are you an Autism Warrior? ............................................................. 1 Aims of this Ethnography ........................................................................................................... 3 Engaging in a Study of Autism Parents ...................................................................................... 6 Previous Research Informing the Ethnography ...................................................................... 7 Theoretical Situation ................................................................................................................. 11 From Abstraction to Experience… and Back ........................................................................... 21 From Abstraction to Experience ........................................................................................... 22 Three Thematic Threads ........................................................................................................... 25 Thread One: Re-ordering Activity. ....................................................................................... 26 Thread Two: The Multiplicity of Experience ....................................................................... 27 Thread Three: The Temporality of Experience .................................................................... 28 Structure of this Ethnography ................................................................................................... 29 Chapter 1: Participants and Setting .......................................................................................... 33 When Leslie Met Sarah ............................................................................................................. 33 Participant Selection - Autism Parents in New York City Who Attend a Support Group ....... 36 Participant Selection - Autism Parents Who are Members of Autism Parent Support Group (APSG) ...................................................................................................................................... 39 Situated Learning ...................................................................................................................... 40 History and Activities of APSG ................................................................................................ 41 Mothers ..................................................................................................................................... 46 Fathers ....................................................................................................................................... 47 Settings ...................................................................................................................................... 48 Chapter 2: Methodology............................................................................................................. 55 Timeline .................................................................................................................................... 56 Trustworthiness ......................................................................................................................... 57 Data Collection Strategies......................................................................................................... 59 Participant observation strategy ............................................................................................ 59 Interview strategy.................................................................................................................. 62 Internet data strategy ............................................................................................................. 66 Data Analysis Strategies ........................................................................................................... 69 Data management and organization ...................................................................................... 69 Thematic indexing and NVivo .............................................................................................. 70 Reflexivity and My Potential Impact on the Project ................................................................. 72 Chapter 3: Re-charting Territories, Redefining Roles: Identifications and Relationships 75 Sarah’s Diagnosis Story ............................................................................................................ 75 The Diagnosis Moment ............................................................................................................. 80 Early Intervention ..................................................................................................................... 88 Telling Others and Testing Relationships ................................................................................. 94 Marriages and Partnerships Tried and Tested ......................................................................... 102 Conclusion .............................................................................................................................. 108 Chapter 4: Peculiarities and Particularities: The Issue of Bodies ........................................ 113 Getting Franklin Ready for School ......................................................................................... 113 Peculiarities and Particularities ............................................................................................... 116 i Experiencing the World Through the Autistic Body .............................................................. 119 Using Topics of Concern to Interrogate Experiences of the Body ......................................... 120 Activities of Daily Living (ADL) ....................................................................................... 122 Gastrointestinal Issues ........................................................................................................ 126 Child and Parent Safety ...................................................................................................... 131 Sexuality and Puberty ......................................................................................................... 138 Long-term Caregiving ......................................................................................................... 144 Conclusion .............................................................................................................................. 147 Chapter 5: Navigations and Limitations: The Issue of Institutions ..................................... 148 Institutional Actants ................................................................................................................ 149 Ordering Bodies Through Institutional Action ....................................................................... 153 Discursive Authority ............................................................................................................... 155 Discursive Authority at Work: Securing Educational Services .......................................... 159 The Bureaucratization of Autism ............................................................................................ 168 Bureaucratic Practices at Work: Securing Healthcare Services ......................................... 170 Conclusion .............................................................................................................................. 177 Chapter