How the love and labor of parents have changed our understanding of autism
Autism has attracted a great deal of attention in recent years, thanks to dramatically increasing rates of diagnosis, extensive organizational mobilization, journalistic coverage, biomedical research, and clinical innovation. Understanding Autism, a social history of the expanding diagnostic category of this contested illness, takes a close look at the role of emotion—specifically, of parental love—in the intense and passionate work of biomedical communities investigating autism.
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.
Chloe Silverman is an associate professor in the department of English at Pennsylvania State University.
Table of Contents
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
What People are Saying About This
From the Publisher
"Too few books tell the history of autism. Chloe Silverman bravely takes this on, without avoiding the difficult eras in this history. Sensitively exploring Bruno Bettelheim and Andrew Wakefield's involvement, while skillfully painting the evolution of modern genetic theory, Silverman describes even the more controversial treatments with a sense of balance and calm. Her book unearths new insights."—Simon Baron-Cohen, University of Cambridge"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
