Claire Decoteau: Fellow Lecture

“The ‘Western Disease’: Epistemic Contestations over Autism in the Somali Diaspora”

There is some statistical evidence that Somali refugee populations have high prevalence rates of autism spectrum disorder (ASD).  Somali-Americans and Canadians call autism the ‘Western disease’ because there is no word for autism in the Somali language and because they claim autism does not exist in Somalia. Many Somali parents have forged epistemic communities, united around a coherent theory of autism causation that directly challenges mainstream scientific authority. The ‘illness narratives’ that Somali parents tell in order to make sense of their children’s vulnerability to autism reflect the marginalization and inequality they have faced as new immigrants and visible minorities.  They argue that it is the diet and medical environment in North America (including the use of preservatives, genetically-modified processing, and antibiotics in both health care and food production) that explains the high rates of autism within the Somali diaspora. The blaming of forced migration, the Western lifestyle, and North American health and food industries 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. 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.

Claire Laurier Decoteau received her PhD in Sociology from the University of Michigan (2008).  Broadly, her research focuses on the social construction of health and disease, the politics of knowledge production, and peoples’ grounded experiences with healing and health care systems.  Decoteau was awarded the 2009 American Sociological Association’s Dissertation Award.  Her book, Ancestors and Antiretrovirals: The Biopolitics of HIV/AIDS in Post-Apartheid South Africa (2013, University of Chicago Press) argues that it is through HIV/AIDS policy that the South African government has attempted to balance the contradictory demands of postcolonial nation-building – forced to satisfy the requirements of neoliberal global capital and meet the needs of its most impoverished population.

Decoteau is currently writing her second book, which focuses on the high rates of autism spectrum disorder in Somali diaspora communities in Minneapolis and Toronto.  This three-year qualitative project was funded by the National Science Foundation.  The book focuses on the epistemic communities Somali refugees have forged to make sense of their children’s vulnerability to autism, which reflect the marginalization and inequality they have faced as new immigrants and visible minorities.  It compares Somalis’ explanations to illness narratives of other main constituency groups within the autism world, explores the complicated politics of autism (and vaccine resistance), compares and contrasts service provision and health inequality in Toronto and Minneapolis, and analyzes the shifting dynamics within the field of autism science. This is the first study of autism to explore the racial, class and national implications of autism etiology and politics.

Decoteau has also engaged in projects focusing on: the US federal vaccine court proceedings on autism where the controversial link between childhood vaccinations and autism development was examined; sex work and transactional sex in South Africa, where gift and commodity exchange become symbolic distinctions in an increasingly neoliberal economy; the epistemic debates that were instigated by the release of the DSM-5; and a series of theoretical and methodological pieces on Bourdieusian action theory and critical realism.