2013 Theses Doctoral

Parents Speak: An Ethnographic Study of Autism Parents

de Wolfe, Juliette Lynn

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.