The Western Disease: Contesting Autism in the Somali Diaspora By Claire Laurier Decoteau, Chicago: University of Chicago Press. 2021. pp. 277.
M. Ariel Cascio
Central Michigan University College of Medicine
The Western Disease provides much needed ethnographic attention to the documented high prevalence of autism diagnoses in the Somali diaspora in North America and the range of proposed explanations for it: biological, social, and structural explanations that are sometimes contradictory and irreconcilable. The Western Disease does not seek to explain the cause of this high prevalence but to analyze how Somalis living in the United States and Canada explain it. Decoteau frames this analysis around the concept of epistemic communities—communities of practice organized around implicit or explicit standards of expertise, theories of causation, mechanisms of treatment, and mobilization of resources. She uses a postcolonial lens to tell the story and history of autism in the Somali diaspora and from the perspective of the Somali diaspora, demonstrating how autism has been constructed as White and middle-class.
The Western Disease unpacks how Somalis claim a higher prevalence not just of autism but of a specific kind of autism characterized by high levels of support needs and commonly associated with gastrointestinal and immunological stress, which Somalis relate to the new environmental toxicity and processed foods encountered in North America. Decoteau analyzes this unique Somali experience of autism through the lens of Pierre Bourdieu’s (1977) politics of distinction. Somali parents use this politics of distinction not only to distinguish their children from others diagnosed with autism but also distinguish themselves from other racialized North American Black populations by asserting their Islamic identity. Both distinctions, and the way they intersect (as medical and economic racism disable autistic Somalis), form part of Somalis’ postcolonial theory of autism. Somalis approach their uniqueness as “outsiders within” the Alternative Autism Movement (AAM) that seeks “biomedical” causes of autism and often pursues biomedical interventions and cures such as specialized diets, chelation, and hyperbaric oxygen treatment. This approach is “alternative” to both neurodiversity and mainstream medical models of autism; many “biomedical” interventions can be dangerous and even fatal. As “outsiders within,” Somalis navigate mainstream medical and economic systems as well as the AAM that are dominated by White and settler/colonial logics.
One of the most compelling contributions of The Western Disease is the comparison between Somali epistemic communities around autism in the United States (focused on vaccine-related understandings of autism) and in Canada (focused on gut microbiome-related understandings). In the United States, Somalis may choose not to vaccinate (or re-vaccinate) their children in part as a protest of medical racism and the lack of choice they have faced first as refugees and immigrants subject to medical requirements of migration and then as Black people in the US healthcare and welfare systems. This epistemic community highlights structural causes of disability. In Canada, Somalis partnered with key microbiome researchers to mobilize different forms of expertise and highlight the geographic and environmental factors that can disable. This work joins that of others, such as Dana Baker (Baker & Steuernagel, 2009), in demonstrating how historical, structural, and material differences between the United States and Canada shape different advocacy trajectories and, as Decoteau aptly illustrates, epistemologies. These works dehomogenize North American understandings of autism. By focusing on the Somali diaspora and highlighting the roles of immigration policy, medical racism, and Islamophobia, Decoteau also fulfills her goal of decentering Whiteness in this comparative analysis.
The Western Disease is well structured for teaching. Decoteau clearly previews and summarizes her arguments within and between chapters, with useful signposting that constantly ties back to her central points. For advanced undergraduate or early graduate-level medical anthropology students, chapters 5 and 6 provide rich descriptions of the US and Canadian epistemic communities that take different approaches to the AAM. The comparison illustrates that “Western medicine” is not a monolith, and it shows the interplay between medicine and policy. Chapter 5, particularly the subsection “Vaccine Morality Tales,” would also be instructive for medical and health professions students grappling with how to respectfully address vaccine hesitancy, as Decoteau reviews the educational and sociological literature on vaccine hesitancy and vibrantly asserts the agency of her Somali interlocutors, challenging stereotypes that they are uninformed or manipulated by a predatory anti-vaccine movement.
From a neurodiversity perspective, The Western Disease can be an uncomfortable read. Both the US and Canadian Somali epistemic communities absolutely frame autism as a disease, a problem, and something to be cured. Decoteau acknowledges this discomfort and others in the introduction, arguing that it is important to engage with this uncomfortable content because “in order to render perceptible the causal forces operating in peoples’ lives, we must grapple with the ontologies they forge from their experiences” (22). This emic perspective is necessary “to gain a valuable critical account of Western knowledge formation and the scientific enterprise” (23) In other words, Somalis’ epistemic engagement can teach anthropologists something important about how knowledge works and learning it necessitates seriously learning participants’ perspectives and truths.
These perspectives are not merely emotionally uncomfortable; they come with high stakes: lower vaccination rates, engagement in dangerous autism cures, and related topics entail real harm to real people. As a reader, can I really write this review in praise of this book when the book itself is about people who oppose the neurodiversity paradigm for reasons that I consider to be misconceptions (e.g., that neurodiversity does not apply to people with high support needs)? Ought I not spend this time explaining why this is such a harmful myth, as I have done elsewhere with John Aspler and Kelly D. Harding (Aspler et al., 2022)? This is often a challenge for ethnographers who may not share their participants’ perspectives yet seek to faithfully recount and unpack them.
While Decoteau convincingly asserts the value of the emic perspective in the introduction, even addressing her own stance on vaccination, throughout the book her language sometimes hints that she may be breaking that emic perspective. For example, she identifies several aspects of the AAM and Somalis’ engagement with it as “problematic.” She deftly brings the reader deeply into the inner logics of different aspects of the AAA and Somalis’ epistemic communities and sometimes comes back out to problematize them. Other aspects are left relatively unproblematized. At times, I found myself working very hard to disentangle the emic from the etic—perhaps unnecessarily so and certainly in a way that is full of my own assumptions. Yet I found that I wanted to know either more or less about Decoteau’s perspective. An expanded introduction or examples throughout the text that highlight how Decoteau managed any doubts during fieldwork would be helpful for adding more of Decoteau’s own perspective. Alternatively, to address these issues without as much personal perspective, Decoteau could highlight more the sections where she compares interviews with different respondents who critique each other (e.g., Somali public health workers versus Somali “public” individuals). More material of this style could likely also shed light on the other problematics Decoteau addresses.
The Western Disease will be of great interest to Medical Anthropology Quarterly readers pursuing anticolonial praxis, particularly those looking at health-related epistemologies and social movements. It richly describes Somalis’ postcolonial theory of autism. Moreover, Decoteau’s analysis of the sociological and anthropological literature on vaccine hesitancy is timely and nuanced and will be of interest to readers working in and on public health. The focus on health social movements and engagements with the microbiome also have implications that go beyond autism studies. While Decoteau has plenty of critique for Nikolas Rose’s theories of biopolitics, microbiome theories of autism strongly echo Rose’s description of somatic expertise as parents strive to know, interpret, and modify their child’s microbiome (Rose, 2007). The Western Disease therefore provides an important contribution to the overall study of health-related knowledge production in research, medical practice, individual daily life, and the complicated intersections of all three.
Aspler, John, Kelly D. Harding, and M. Ariel Cascio. 2022. “Representation Matters: Race, Gender, Class, and Intersectional Representations of Autistic and Disabled Characters on Television.” Studies in Social Justice 16 (2): 323–48.
Baker, Dana Lee and Trudy Steuernagel. 2009. “Comparative Policy Entrepreneurship: The Case of Autism-Related Policy in North America.” Journal of Comparative Policy Analysis 11 (2): 233–248.
Bourdieu, Pierre. 1977. Distinction: A Social Critique of the Judgment of Taste. Translated by Richard Nice. Cambridge, MA: Harvard University Press.
Rose, Nikolas. 2007. The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century. Princeton, NJ: Princeton University Press.