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.
"For Chloe Silverman, 'understanding autism' means understanding how autism has become a diagnostic category and why for some people, in autism advocacy groups for example, it isn't a pathology at all but just a different way of seeing the world. . . . Silverman's remarkable book is a testimony to the difference parents of autistic children have made to the understanding of autism, and it also has things to say about the difference a parent's understanding can make to understanding many other things that children suffer from."--Adam Phillips, London Review of Books
"Autism remains a contested condition, and given the steep rise in research, diagnosis rates and media coverage, the debate is set to run and run. Science historian Chloe Silverman gives a balanced, sensitive social history of autism that unflinchingly covers many controversial byways. She explores the theory and biomedical advances, and how gene banks, schools and autism organizations have enriched understanding--augmented by parents of children with autism, whose experiences have informed and inspired much research."--Nature
"Comprehensive, well annotated, and fascinating to read, Understanding Autism will appeal to readers from a broad variety of disciplines. Silverman provides an honest and refreshing perspective on encouraging dialogue about a condition that will likely continue to be in the public spotlight for decades to come."--Science
"Silverman provides a very good account of autism; knowledgeable readers will find themselves nodding along with the details. The author excellently portrays the relationship of autism with its social history."--Choice
"Silverman's book presents a vivid picture of the ongoing and somewhat dialectical (in the Hegelian sense) relationship between parents of autistic children and professionals who specialize in autism."--W. R. Albury, Bulletin of the History of Medicine
Table of Contents:
Introduction: Love as an Analytic Tool 1
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
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