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Multiple Autisms

Spectrums of Advocacy and Genomic Science

2016
Author:

Jennifer S. Singh

Multiple Autisms

Investigates the ever-expanding meanings of autism to those who study the disorder and to those who live with it

Jennifer S. Singh sets out to discover how autism emerged as a genetic disorder and how this affects those who study autism and those who live with it. This is the first sustained analysis of the practices, politics, and meaning of autism genetics from a scientific, cultural, and social perspective.

Jennifer Singh brilliantly elaborates the complex story of how autism science has evolved to give preference to genetic explanations and is driven by advances in microarray technologies. Her analysis is informed by a multidimensional perspective, drawing from her own expert understanding of the scientific research and extensive interviewing with scientists, activists, parents, and people with autism. Multiple Autisms is pathbreaking scholarship that raises urgently important questions about how the research community and other constituencies narrow our understandings of autism as a human condition.

Kristin Bumiller, Amherst College*

Is there a gene for autism? Despite a billion-dollar, twenty-year effort to find out—and the more elusive the answer, the greater the search seems to become—no single autism gene has been identified. In Multiple Autisms, Jennifer S. Singh sets out to discover how autism emerged as a genetic disorder and how this affects those who study autism and those who live with it. This is the first sustained analysis of the practices, politics, and meaning of autism genetics from a scientific, cultural, and social perspective.

In 2004, when Singh began her research, the prevalence of autism was reported as 1 in 150 children. Ten years later, the number had jumped to 1 in 100, with the disorder five times more common in boys than in girls. Meanwhile the diagnosis changed to “autistic spectrum disorders,” and investigations began to focus more on genomics than genetics, less on single genes than on hundreds of interacting genes. Multiple Autisms charts this shift and its consequences through nine years of ethnographic observations, analysis of scientific and related literatures, and more than seventy interviews with autism scientists, parents of children with autism, and people on the autism spectrum. The book maps out the social history of parental activism in autism genetics, the scientific optimism about finding a gene for autism and the subsequent failure, and the cost in personal and social terms of viewing and translating autism through a genomic lens.

How is genetic information useful to people living with autism? By considering this question alongside the scientific and social issues that autism research raises, Singh’s work shows us the true reach and implications of a genomic gaze.

Multiple Autisms

Jennifer S. Singh is assistant professor of sociology in the School of History and Sociology at Georgia Institute of Technology in Atlanta.

Multiple Autisms

Jennifer Singh brilliantly elaborates the complex story of how autism science has evolved to give preference to genetic explanations and is driven by advances in microarray technologies. Her analysis is informed by a multidimensional perspective, drawing from her own expert understanding of the scientific research and extensive interviewing with scientists, activists, parents, and people with autism. Multiple Autisms is pathbreaking scholarship that raises urgently important questions about how the research community and other constituencies narrow our understandings of autism as a human condition.

Kristin Bumiller, Amherst College*

Multiple Autisms

Contents

Abbreviations
Preface
Introduction: Multiple Ways of Viewing Autism
1. Defining, Counting, Contesting: Changes in Diagnosis, Prevalence, and Advocacy
2. Parent Advocacy and the Rise of Autism Genetics Research
3. No Single Gene for Autism: The Emergence of Genomic Styles of Thought
4. Simplex Families, Complex Exchanges: Why Parents Participate in an Autism Genomic Database
5. Living with Autism: Perspectives of Adults on the Spectrum
Conclusion: A Spectrum of Knowledge Production
Acknowledgments
Appendix: Methods
Notes
Bibliography
Index