Understanding Autism: Parents, Doctors, and the History of a Disorder

"This fascinating book combines historical perspective with ethnographic investigation of the grassroots autism movement. What unites past and present is the unwavering power of parents to influence the dizzying array of theories, practices, and interventions that have been advanced in response to the challenges posed by autistic children. Parental love and labor, long overshadowed by scientific discovery and professional authority, finally take center stage. Silverman makes a persuasive case for the interdependence of affect and objectivity in autism's dramatic narrative."--Ellen Herman, University of Oregon

"This timely book traces the history of autism as a diagnostic category, the various ways that researchers, practitioners, and parent activists have interpreted and acted upon autism, and some of the current controversies surrounding this contested diagnosis. With sensitivity and respect, Silverman makes a significant contribution by addressing seriously the role of love in the production of scientific knowledge, the practice of biomedicine, and the advocacy and research of parents."--Gail H. Landsman, author of Reconstructing Motherhood and Disability in the Age of "Perfect" Babies

Chloe Silverman tracks developments in autism theory and practice over the past half-century and shows how an understanding of autism has been constituted and stabilized through vital efforts of schools, gene banks, professional associations, government committees, parent networks, and treatment conferences. She examines the love and labor of parents, who play a role in developing--in conjunction with medical experts--new forms of treatment and therapy for their children. While biomedical knowledge is dispersed through an emotionally neutral, technical language that separates experts from laypeople, parental advocacy and activism call these distinctions into question. Silverman reveals how parental care has been a constant driver in the volatile field of autism research and treatment, and has served as an inspiration for scientific change.

Recognizing the importance of parental knowledge and observations in treating autism, this book reveals that effective responses to the disorder demonstrate the mutual interdependence of love and science.

Acknowledgments ix

Introduction: Love as an Analytic Tool 1

Part One

Chapter 1: Research Programs, "Autistic Disturbances,"and Human Difference 29

Chapter 2: Love Is Not Enough: Bruno Bettelheim, Infantile Autism,and Psychoanalytic Childhoods 61

Chapter 3: Expert Amateurs: Raising and Treating Children with Autism 93

Interlude: Parents Speak: The Art of Love and the Ethics of Care 125

Part Two

Chapter 4: Brains, Pedigrees, and Promises: Lessons from the Politics of Autism Genetics 141

Chapter 5: Desperate and Rational: Parents and Professionals in Autism Research 167

Chapter 6: Pandora’s Box: Immunizations, Parental Obligations,and Toxic Facts 197

Conclusion: What the World Needs Now: Learning About and Acting on Autism Research 229

Notes 237

Bibliography 313

Index 329