Autism-Related Research

From 2013-2021, I conducted archival and qualitative research on four different projects related to autism and psychiatry.

The Western Disease analyzes the curiously high rates of autism among Somalis in Minneapolis and Toronto, and illustrates how Somalis’ experiences of immigration and racial marginalization play a prominent role in how they make sense of autism. Somalis in both locations have forged epistemic communities, united around a unique theory of autism that challenges mainstream, genetic explanations. Somalis contend autism is caused by environmental and social conditions unique to life in Western societies. They blame forced migration, the Western lifestyle, and North American health and food industries, and their analysis operates as a postcolonial critique of their alienation as refugees and of their experiences of racism within the health and welfare systems of North America. Centering an analysis on autism within the Somali diaspora exposes how autism has been institutionalized as a white, middle-class disorder, leading to health disparities based on race, class, age and ability. But Somalis also ask us to consider the social causes of disease and the role environmental changes and structural inequalities play in health vulnerability. Drawing on ethnographic research in Toronto and Minneapolis, this is the first study of autism to explore the racial, class and national implications of autism etiology and politics.

This book was awarded the 2022 Robert K. Merton Prize from the Science, Knowledge and Technology section of the American Sociological Association.

Articles Based on the Book

Decoteau, Claire Laurier and Paige L. Sweet. 2023. “Vaccine Hesitancy and the Accumulation of Distrust.” Social Problems. https://doi.org/10.1093/socpro/spad006

Decoteau, Claire Laurier. 2017. “The ‘Western Disease’: Autism and Somali Parents’ Embodied Health Movements.” Social Science & Medicine 177 : 169–176.

  • Genetics, Vaccines and Autism

    We analyzed the archives of the Interagency Autism Coordinating Committee, a federal agency with both expert and lay members, that makes policy, treatment and research recommendations for autism. When this agency first began meeting, prominent members of vaccine skeptic and alternative autism organizations were included and they pushed for more environmental explanations of autism, but slowly, discussions about the causes of autism only included genetic and genomic accounts. We develop the concept of “subsumptive orthodoxy” to make sense of how dominant scientists in the field of autism incorporated the environment into the genome, in response to social movement actors mobilizing around vaccine injury.

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    Decoteau, Claire Laurier and Meghan Daniel. 2020. “Scientific Hegemony and the Field of Autism.” American Sociological Review 85, 3: 451-476.

    Winner: 2022 Star Nelkin Award, Science, Knowledge and Technology Section of the American Sociological Association

  • Adjudicating Relationship between Vaccines & Autism

    After 5,600 families of children diagnosed with autism filed claims with the National Vaccine Injury Compensation Program in the United States, the court selected ‘test’ cases consolidated into the Omnibus Autism Proceedings, held from 2007 to 2008, to examine claims that vaccines caused the development of autism. In one paper, we analyzed these archives and argue that experts who represented the government had greater scientific capital to strategically directed non-knowledge toward genetic research, thereby foreclosing the possibility of environmental causation of autism. The parents, on the other side of the courtroom, used their parental, situated knowledge as their credibility and tried to argue that the science on autism is undone, and that there is still space for environmental explanations of autism, including vaccine injury. In another paper, we analyze the ways in which parents use the bodily suffering of their children to make citizenship claims on their behalf, in order to be compensated for their injury – we label this process custodial citizenship.

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    Underman, Kelly, Paige Sweet, and Claire Laurier Decoteau. 2017. “Custodial Citizenship in the Omnibus Autism Proceedings.” Sociological Forum 32, 3: 544-565.

    Decoteau, Claire Laurier and Kelly Underman. 2015. “Adjudicating Non-knowledge in the Omnibus Autism Proceedings.” Social Studies of Science 45, 4: 471-500.

  • DSM Debates

    In 2013, the American Psychological Association finally released the Diagnostic and Statistical Manual, DSM-5, psychiatry’s ‘bible’ of mental disorders, after a lengthy and very controversial review process. We analyze the public sphere and professional debates about the DSM-5. In one paper, we trace the contentious history of psychiatry and its elusive search for the biological origins of mental disorders, suggesting that its failure to find empirical evidence within biology, actually propels the field to reinvent itself every twenty years. In another paper, we analyze the ways in which the DSM imagines “normality,” as its basis for defining mental disease.

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    Sweet, Paige and Claire Laurier Decoteau. 2018. “Contesting Normal: The DSM-5 and Psychiatric Subjectivation.” BioSocieties 13 (1): 103-122 *

    Decoteau, Claire Laurier and Paige L. Sweet. 2016. “Psychiatry’s Little Other: The DSM-5 and Debates over Psychiatric Science.” Social Theory and Health 14, 4: 414–435.

    *Honorable Mention: 2020 Star Nelkin Award, Science, Knowledge & Technology Section, American Sociological Association