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The Western Disease

Contesting Autism in the Somali Diaspora

The Western Disease

Contesting Autism in the Somali Diaspora

Because autism is an increasingly common diagnosis, North Americans are familiar with its symptoms and treatments. But what we know and think about autism is shaped by our social relationship to health, disease, and the medical system. In The Western Disease Claire Laurier Decoteau explores the ways that recent immigrants from Somalia to Canada and the US make sense of their children’s diagnosis of autism. Having never heard of autism before migrating to North America, they often determine that it must be a Western disease. Given its apparent absence in Somalia, they view it as Western in nature, caused by environmental and health conditions unique to life in North America.

Following Somali parents as they struggle to make sense of their children's illness and advocate for alternative care, Decoteau unfolds how complex interacting factors of immigration, race, and class affect Somalis’ relationship to the disease. Somalis’ engagement with autism challenges the prevailing presumption among Western doctors that their approach to healing is universal. Decoteau argues that centering an analysis on autism within the Somali diaspora exposes how autism has been defined and institutionalized as a white, middle-class disorder, leading to health disparities based on race, class, age, and ability. The Western Disease asks us to consider the social causes of disease and the role environmental changes and structural inequalities play in health vulnerability.

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African Studies

Sociology: Demography and Human Ecology, Medical Sociology, Race, Ethnic, and Minority Relations

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Reviews

"In her exciting book, The Western Disease: Contesting Autism in the Somali Diaspora, Claire Decoteau advances postcolonial scholarship by setting forth a postcolonial theory of autism . . . It moves deftly between the analyst’s postcolonial lens and Somalis’ postcolonial theory of autism and thus is an important contribution to postcolonial theory."

American Journal of Sociology

"The story of autism has been told, up until now, mostly from the point of view of its white, middle-class, parents and self-advocates. The Western Disease switches the lens and offers its readers the opportunity to view autism from the margins, from deep inside the epistemic community built by Somali parents of children with autism living in Minneapolis and Toronto. It is a superb work of ethnography, faithfully attuned to the lived experiences of dislocation, marginalization, and struggle, which inform the parents' understanding of autism.”

Gil Eyal, Columbia University

“With deeply honed ethnographic insights and theoretical verve, Decoteau demonstrates that Somali refugees––due to their history, religion, and race-class status––have developed alternative understandings of autism. By immersing herself into these Somalis’ worldview, Decoteau exposes implicit race and class assumptions underlying the North American perspective on autism and autism therapies. Mandatory reading for understanding racial inequities in health care."

Stefan Timmermans, UCLA

"A revelatory account of how racial inequality, medical discrimination, and migration converge to produce unique vulnerability to disease. Decoteau perceptively limns how Somali diasporic communities theorize and negotiate their acute, yet underrepresented, experience with autism. This is pathbreaking scholarship that deepens our understanding of the myriad ways social conditions shape illness.”

Alondra Nelson, president of the Social Science Research Council

"Incorporating postcolonial perspectives and confronting Western assumptions are crucial challenges for contemporary health sociology and disability studies. The Western Disease is a fascinating read in these respects, skillfully contesting both biomedical and activist approaches towards autism in Western contexts."

Sociology of Health & Illness

Table of Contents

List of Abbreviations

INTRODUCTION / The “Western Disease”

ONE / A Postcolonial Theory of Autism

TWO / Uneven Landscapes of Care

THREE / Approaching Autism Otherwise

FOUR / Political and Epistemic Mobilization

FIVE / Vaccine Skepticism and the Accumulation of Distrust

SIX / The Microbiome and Postcolonial Critique

CODA / Centering the Margins

Appendix on Methods

Acknowledgments

Notes
References
Index