The Western Disease: Contesting Autism in the Somali Diaspora

By Claire Laurier Decoteau

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.

• Language: English
• Publisher: University of Chicago Press
• Release date: May 31, 2021
• ISBN: 9780226772394

Book preview

The Western Disease

The Western Disease

Contesting Autism in the Somali Diaspora

Claire Laurier Decoteau

The University of Chicago Press

Chicago and London

The University of Chicago Press, Chicago 60637

The University of Chicago Press, Ltd., London

© 2021 by The University of Chicago

All rights reserved. No part of this book may be used or reproduced in any manner whatsoever without written permission, except in the case of brief quotations in critical articles and reviews. For more information, contact the University of Chicago Press, 1427 E. 60th St., Chicago, IL 60637.

Published 2021

Printed in the United States of America

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ISBN-13: 978-0-226-54575-2 (cloth)

ISBN-13: 978-0-226-77225-7 (paper)

ISBN-13: 978-0-226-77239-4 (e-book)

DOI: https://doi.org/10.7208/chicago/9780226772394.001.0001

Library of Congress Cataloging-in-Publication Data

Names: Decoteau, Claire Laurier, author.

Title: The Western disease : contesting autism in the Somali diaspora / Claire Laurier Decoteau.

Other titles: Contesting autism in the Somali diaspora

Description: Chicago ; London : The University of Chicago Press, 2021. |Includes bibliographical references and index.

Identifiers: LCCN 2020051198 | ISBN 9780226545752 (cloth) | ISBN 9780226772257 (paperback) | ISBN 9780226772394 (ebook)

Subjects: LCSH: Autism. | Autism—Public opinion. | Somalis—North America—Attitudes. | Somalis—Minnesota—Minneapolis. |Somalis—Ontario—Toronto. | Immigrants—Somalia—Attitudes. |Immigrants—North America—Attitudes. | Social medicine—North America.

Classification: LCC RC533.A88 D43 2021 | DDC 616.85/88200899354—dc23

LC record available at https://lccn.loc.gov/2020051198

This paper meets the requirements of ANSI/NISO Z39.48-1992 (Permanence of Paper).

For Andy and Felix

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

Abbreviations

AAM: alternative autism movement

ABA: applied behavioral analysis

ADHD: attention-deficit / hyperactivity disorder

ADDM: Autism and Developmental Disabilities Monitoring Network

ARI: Autism Research Institute

ASD: autism spectrum disorder

BCBA: board-certified behavioral analyst

CDC: Centers for Disease Control and Prevention

CTSS: Children’s Therapeutic Services and Supports (Minnesota)

DAN!: Defeat Autism Now!

DD: developmental disability

DSM: Diagnostic and Statistical Manual

EBD: emotional behavioral disorder

EIBI: early intensive behavioral intervention

FGD: focus group discussion

GI: gastrointestinal

GMO: genetically modified organism

IACC: Interagency Autism Coordinating Committee

IBI: intensive behavioral intervention (autism early intervention program, in Ontario)

ICD: International Classification of Diseases

ID: intellectual disability

IEP: Individualized Education Program

MAPS: Medical Academy of Pediatric Special Needs

MCYS: Ministry of Children and Youth (Ontario)

MDH: Minnesota Department of Health

MDHS: Minnesota Department of Human Services

MMR: measles, mumps, and rubella vaccine

NIH: National Institutes of Health

NIMH: National Institute of Mental Health

NSAC: National Society for Autistic Children

PCA: personal care attendant (Minnesota)

SSI: Supplemental Security Income (United States)

TDSB: Toronto District School Board

UNHCR: United Nations High Commissioner for Refugees

WHO: World Health Organization

Introduction

The Western Disease

Adar Hassan,¹ a Somali-Canadian woman living in Toronto, has two sons with autism; the eldest is nonverbal and the youngest speaks a little.² Adar told me that many parents do not believe anything is wrong with their children and contest the diagnosis of autism, but with her eldest son, Ali, she needed no convincing. She knew something was wrong because of the constant diarrhea, the inability to sleep, and the eczema that covered his entire infant body. Autism spectrum disorder (ASD) is diagnosed on the basis of developmental delays in three areas: language, social skills, and behavioral repertoire (often presenting as repetitive play, object fixation and self-stimulation).³ However, sleep, gut, and skin disorders are common comorbidities of autism. Adar believes that Ali developed typically and was reaching his developmental milestones until the age of eighteen months, when he suddenly wasn’t there anymore.⁴ She describes a moment when a photographer came to her home to take pictures and it was difficult to photograph Ali because he refused to be held. When the photos came back from the developer, she thought: He’s nowhere to be found. . . . It’s like he doesn’t exist. She blames the antibiotics that were prescribed to treat his ear and chest infections:⁵

Pneumonia came in 1999 January. We took him to the Sick Kids hospital. They treated him with an IV [intravenous] antibiotic. . . . Then we get out of the hospital, and then he starts tippy-toeing.⁶ Diarrhea even got worse because of the antibiotic. I think now, what I know now, the bad bacteria took over his body and wiped out the good flora. He became completely autistic at that point when he was two years old.

It was at this point that Adar had Ali tested. The pediatrician kept putting her off. He’ll speak eventually, she was told again and again. But after this bout with pneumonia, she insisted that Ali get a referral to a developmental pediatrician. It took the doctor only five minutes to return from the testing room and tell her, I’m sorry. Your son has autism. What? she asked. What does that mean? How do I tell my husband? Can you write it down? She had never heard the word. At first, she told me, she was relieved. At least it had a name, she thought, and now I can help my son. She began attending support groups for parents of children with autism, and listened as other parents talked about behavioral therapies. They seemed so expert, she told me, but all I’m thinking is: Do you guys know how I can make my son sleep at night? He’s only two and a half years old. Me and him, we stay up all night in the living room, until he wears himself out from running around and literally falls asleep where he’s standing. But no one was talking about the medical issues her son was facing: diarrhea, lack of sleep, eczema. And yet, recent studies show that as many as 80 percent of children diagnosed with autism spectrum disorder suffer from a series of comorbidities, including eczema, allergies, sleep difficulties, gastrointestinal (GI) problems, and dietary restrictions (Mannion et al. 2013).

Adar does not believe that autism is a genetic disorder, because no one in her family has ever seen such behaviors or symptoms before.⁷ And unlike Americans, Somalis know all of their ancestors:

The people who say it’s genetic, they don’t know what the hell they are talking about. Because if it’s genetic, why did it only start with my kids, with my family? When I find out first, I’m hearing about genetic, genetic, genetic. I called my family. Cousins. Uncles. Aunts. Asking those questions. Have you ever seen this kind of kids acting this way and that way? In the Somali community, we are connected. Generation to generation to generation. We know where we came from. We’re not like our father and his father, that’s it. No. [Chuckle.] We go like a hundred fathers back. We’re calling. Asking. Nobody ever heard of it.

In addition, Adar explained to me, the rates of autism prevalence have climbed steadily since the early 1990s. When her first son was diagnosed with autism in 2001, one out of every 150 children received an autism diagnosis. Based on data from 2014, the rates are now one in 59 (Baio et al. 2018). In Adar’s words: "That can’t be explained genetically. Genetics don’t explode. . . . They know even if they don’t say it. There’s something environmental. . . . The kids with autism are increasing, but also ADHD [attention deficit / hyperactivity disorder], diabetes, asthma."

In 2002, Adar had both of her sons in a local summer camp for children with developmental disabilities in Toronto. One day, she noticed another Somali boy attending the camp. This was the first Somali child, besides her own two sons, that she had seen with autism. This child’s mother, Idman Roble, would become Adar’s closest friend and confidante. Idman and Adar began to conduct research online about autism, its causes, and possible therapies. In 2004, together with an early childhood development specialist named Fatima Kediye, who had worked with their children at different times, they formed a support group in Toronto for Somali mothers of children with autism. Fatima said that she had begun to notice the out of this planet rates of autism in the Somali community in 2003, because more and more children exhibited similar symptoms (interview, 10 June 2015). These three women engaged in years of research: they scoured medical journals, attended conferences on autism, and joined online parent chat groups to talk to Somalis in other parts of the diaspora, as well as non-Somali mothers of children with autism. Eventually their theories began to coalesce around a series of environmental causes they believed were essential to the development of autism.

Rather than genetics, Adar, Idman, Fatima and other members of the Toronto support group believe it is Somalis’ forced migration to North America that rendered their children vulnerable to the development of autism. Adar highlights some of the environmental and agricultural differences between life in Somalia and Canada that she believes contribute to autism risk:

In Somalia, it’s sun all the time. It’s North Africa. So here we have a vitamin D deficiency. Also, the food plays a big role. Because we grew up drinking raw milk back home. We have our own cows. . . . The farmers, you know them. They’re your neighbors. It’s fresh, right from the farm. I told you that we eat a lot of grain in Somalia. That’s our grain. . . . We never heard of genetic [modification] until we came here. There’s no pesticide. There’s no herbicide. There’s no chemicals, fertilizer, or anything like that. . . . Also, we used to eat a lot of fermented food that has the good flora. Also, we play in the sand and dirt. Nobody cares about it. If kids play in the dirt here, you have to clean, clean, clean, clean, clean, and wipe out everything. You’re not allowed the kids to have their freedom. All those things, it’s combination of all those things that messed up our good flora. To be honest with you, our kind of people, we are not designed to live in this kind of climate, in this kind of environment. That’s why our kids are becoming like this. . . . They’re having neurological problems.

This quote highlights the causal features many Somalis believe contribute to their vulnerability to autism, including vitamin D deficiencies from changing exposure to sunlight, the lack of raw milk in North American diets, the overly sanitized environments in North American schools and hospitals, and agricultural production that relies on genetic modification, fertilizers, and pesticides. In addition, Adar, like many Somali women in North America, gave birth through cesarean section because Western doctors are unfamiliar with labor in women who have been circumcised. Research on gut bacteria indicates that babies born by cesarean have less diverse microbiomes because they do not acquire their mother’s vaginal and intestinal microbes at birth (Neu and Rushing 2011; Toh and Allen-Vercoe 2015; Dominguez-Bello et al. 2016). Many Somali parents suggest that their children were given several courses of antibiotics during their infancies, which destabilized their already fragile gut microbiomes. Somalis also frequently identify vaccine injury and toxic environmental conditions as causes for the development of autism in their children. Thus they point to a series of factors associated with their migration and resettlement in North America to explain the high rate of autism in their communities.

There is a strong conviction among Somali immigrants living in North America that autism never existed in Somalia and that Somali children born in Western countries are particularly vulnerable to more disabling forms of autism—manifesting in nonverbal communication, intellectual disabilities, self-injury, and aggressive behavior. One father explained to me: Autism is something related to North America. . . . It is caused by the environment here. When you compare the Somali community in North America and those in Somalia, you see autism only in North America (Abdiwahid Jama interview, 24 July 2015). Adar explains that many Somalis now refer to autism as the Western disease: They say a Western disease now. They call it Western disease, because the kids who [are] born in Somalia, who grow up in Somalia, they don’t have those kind of behaviors. They are not exhibiting at all those traits (interview, 12 June 2014).

Because autism was outside of Somalis’ sense making, there is no word for autism in the Somali language. As autism has become common in the Somali diaspora, Somalis have developed language to describe the condition by way of common symptoms. The term mafiirshe (evader) is used to refer to lack of eye contact, as well as kaligiisocde (loner) to refer to social isolation (Ahmed Hassan communication, 4 December 2015). Parents told me they often use the phrases ilmaha ku hadla or cunug amusin for child who does not speak or quiet child (Ibado Arte interview, 3 November 2015).

Whether or not autism existed in Somalia or exists there today is a complicated question. As I will explain in chapter 1, Somalis were forced to flee Somalia because of political instability that resulted in a coup and subsequent civil war starting in 1991. Somalia remains one of the most volatile countries in the world. Somalis fled to neighboring countries, and the more fortunate began migrating to Western countries at precisely the moment when autism rates around the world were beginning to climb. Illness categories and subsequent diagnoses, which require an established relationship between patients and expert communities, only emerge when certain discursive and structural conditions are met—conditions that did not exist in Somalia before the civil war and still do not exist there today. Autism—as a category, identity and diagnosis—does not exist in Somalia because the infrastructure for its emergence is absent.

When Somalis say that autism does not exist in Somalia, however, they do not mean that the conditions for the disorder’s emergence were impossible. They mean that the disorder is ontologically Western in nature—that it is caused by environmental and health conditions unique to life in North America.

In 2009, the New York Times and Canada’s Globe and Mail featured stories about the mysterious cluster of autism diagnoses in Minneapolis and Toronto’s Somali communities. An Outbreak of Autism, or a Statistical Fluke? asked the New York Times (McNeil 2009). The Globe and Mail referred to autism among Somalis as a growing puzzle (Jiménez 2009). In 2009, the Minnesota Department of Health published a study revealing that children of Somali parents in Minneapolis were two to seven times more likely to receive autism spectrum disorder special education services than were children of non-Somali parents (Minnesota Department of Health 2009). At the same time and across the globe, a study found that rates of ASD in Somali refugee populations in Sweden were three to five times higher than in other populations (Barnevik-Olsson et al. 2008). The Centers for Disease Control and Prevention (CDC) conducted an autism and developmental disabilities monitoring (ADDM)⁸ surveillance study from 2011 to 2012 in Minneapolis,⁹ which confirmed a high prevalence rate of ASD in the Somali population (University of Minnesota 2013; Hewitt et al. 2016). One in thirty-two children of Somali descent, aged seven to nine in 2010, were identified with autism, which was roughly equivalent to the rate among white children in Minneapolis (one in thirty-six), but higher than the rate in any other ethnic group. What set the Somali children apart from their white counterparts was the fact that 100 percent of the Somali children with autism had an accompanying intellectual disability (ID). These CDC findings contribute to a small but growing international body of literature illustrating high prevalence of ASD in the Somali diaspora (Barnevik-Olsson et al. 2008; Keen et al. 2010; Hassan 2012).

There have been no studies on autism rates in Toronto’s Somali community. Until 2018, there was very little surveillance data on autism prevalence in Canada (Oullette-Kuntz et al. 2014 is one exception). In 2018, the National Autism Spectrum Disorder Surveillance System in Canada issued a report indicating a one in sixty-six prevalence rate in Canada, based on data from 2015 (Ofner et al. 2018). There is no information on race or ethnicity in the report. In 2009, David Suzuki made a documentary film called The Autism Enigma, which featured interviews with several parents from the Toronto support group (Sumpton and Gruner 2012). It aired on major media outlets throughout Canada. This film and the CDC surveillance study drew my attention to the high rates of autism in the Somali diaspora. Minneapolis and Toronto are the largest sites of Somali settlement in North America, and they have equivalently sized Somali communities. In addition, groups of Somali parents of children with autism have mobilized for resources and attention in both cities.

High rates of autism in the Somali community are considered puzzling because autism has been largely figured as a white middle-class disorder by academics, advocates, and the media. Due to a long history of discriminatory institutionalization policies, autism was initially believed to be more prevalent in white middle-class populations (Eyal et al. 2010; Schopler et al. 1979). This misconception was shared by clinical psychologists and pediatricians, and it initially influenced referral trends and diagnoses (Eyal et al. 2010: 277n7). More recently, autism clustering in wealthy white populations has been attributed to social networks, the sharing of diagnostic information, the availability of pediatric care, diagnostic expansion, and better detection and reporting (King and Bearman, 2011; Liu, King and Bearman 2010; Liu, Zerubavel and Bearman 2010; Mazumdar et al. 2013). Exposure to pesticides is another causal explanation for autism clustering (Shelton et al. 2014; Pearson et al. 2016). To my knowledge, the clusters of autism within Somali diasporic communities are the first discovered in racially marginalized and economically disadvantaged populations. The lack of attention to autism in marginalized communities partially stems from disparities in diagnosis and reporting (Liptak et al. 2008; Mandell et al. 2009; Travers et al. 2011; Baio 2014). In the 2014 CDC national surveillance study, white children were 30 percent more likely to be identified with ASD than Black children, and 50 percent more likely than Latinx children (Baio 2014). The most recent CDC report (published in 2018) indicates that these racial differences are narrowing (Baio et al. 2018).¹⁰

Disadvantage and inequality have embodied effects, leading to more co-occurrences of intellectual disabilities and more disabling behaviors in marginalized populations (Horovitz et al. 2011; Chaidez et al. 2012; Becerra et al. 2014). Children of color who are diagnosed with autism have higher rates of intellectual disabilities: 44 percent of Black children with ASD diagnoses, compared to 35 percent of Latinx children and 22 percent of white children (Baio et al. 2018). Zuckerman et al. found that Latinx children are diagnosed 2.5 years later than white, non-Latinx children and, when diagnosed, have more disabling symptoms and higher service needs (2014). African American children are diagnosed later than white children, less likely to receive an autism diagnosis on their first specialty visit, and more likely to be misdiagnosed with adjustment disorder, conduct disorder, and ADHD (Angell and Solomon 2014: 51). African American children are given higher scores of aggressive behaviors in clinical observation than white children (Horovitz et al. 2011). Children of color are rarely diagnosed with less disabling forms of autism (Liptak et al. 2008; Emerson et al. 2016; Jo et al. 2015) and often receive referrals for behavioral therapies at much older ages. For Latinx children, late diagnosis is partly the result of a lack of Spanish-language ASD screening and the failure of developmental pediatricians to refer Latinx children for diagnosis (Zuckerman et al. 2013). For undocumented immigrants, concerns about surveillance also keep some families from accessing services for their children, thus demonstrating that oppressive immigration policies have detrimental health outcomes (Fountain and Bearman 2011).

Children of color from lower socioeconomic backgrounds have worse trajectories and outcomes. White children with well-educated parents are more likely to have higher IQs and fewer service needs than children of color with less-educated parents (Fountain et al. 2012). The causal factors for these disparities likely include home and neighborhood environments, quality and intensity of treatment, quality of education, the efficacy with which parents are able to advocate for their children with institutions providing services . . . [demonstrating that] equal access to early intervention and treatment resources for less-advantaged children is vital (Fountain et al. 2012: e1118). Other sources indicate that cultural insensitivity, inability to access translation services, providers taking too little time to engage seriously with families, and pejorative racial presumptions also contribute to disparities that parents of color face in accessing treatment and support for their children with autism (Dyches et al. 2004; Mandell and Novak 2005; Gourdine et al. 2011; Magaña et al. 2012; Parish et al. 2012).

Accounts of the autism epidemic have flooded the public imaginary as the rates of autism have steadily escalated since the late 1990s. The cause of this increase and the etiology of autism are unknown; biomarkers for the disorder remain elusive, despite tremendous research investment over the past thirty years. Autism has easily become one of the twenty-first century’s most contested illnesses, inspiring fear among new parents, igniting epistemic and political debates both within and outside of mainstream science, and instigating the formation of new identities and social movements. Yet most of the public debate and academic scholarship on autism remains severely delimited in its focus. It is largely written about and by white middle-class parents and people with autism. This book seeks to challenge this bias and reconsider the history, epistemic debates, and service landscape for autism from the perspective of those who have been marginalized on the basis of race, nationality, ability, and class. The questions this book addresses are: How does the history, etiology, and embodiment of autism get reconfigured when it is told from the perspective of marginalized populations? And what does such a reconfiguration tell us about scientific knowledge production and service delivery in North America?

Two main arguments structure this book. First, I show how Somalis’ experiences with migration and marginalization influence their beliefs and approaches to autism. The Somali parents I interviewed in both Toronto and Minneapolis used their support groups to establish epistemic communities, united around a theory of autism that challenges dominant scientific approaches and reflects their unique position as refugees. Somalis suggest that they do not experience autism in the same way as other North Americans. They consider their community to be overwhelmed by an epidemic of autism that manifests in only the most disabling forms. They believe their bodies are vulnerable to Western illnesses because migration has brought about shifts in their diets, lifestyles, health, and identities. They blame agricultural production (genetically modified organism [GMO] technology, pesticides, herbicides, and antibiotics), health care practices (overuse of antiseptics, antibiotics, cesarean sections, and vaccinations), and their racial marginalization (manifesting in exposure to pollution and toxins, a poor diet, and lack of access to therapies) as causes. The dislocation and inequality they face have been embodied, affecting the way their children live with autism. Their diasporic positionality lends them a hybrid approach to healing, in which they combine behavioral, spiritual, and biomedical therapies.

Second, centering Somali experiences with autism provides me a lens for analyzing how autism has been institutionalized as a white middle-class disorder. Bowker and Star argue that any system of categorization necessarily produces outsiders, people who misfit into existing classifications (2000). Although categorical infrastructure blends into the background and gains power from its acceptance as commonplace, taking up an analysis from the position of those who misfit renders the borders visible and calls into question the hegemony of the existing order. Therefore, taking up the story of Somalis throws the racialization of autism into stark relief. This matters because, as Somalis themselves suggest, people with more disabling forms of autism have likely experienced diagnostic, therapeutic, and structural inequalities. In chapter 2, I will illustrate the subtle racial inequalities that have structured disability, education, and therapeutic services in both Toronto and the Twin Cities, leading to profound racial disparities. In addition, recentering autism on the margins allows for the development of what I call a postcolonial theory of autism. Rather than pointing to individual genetic origins, Somalis’ stories of autism refocus our attention on social causes. Their diasporic positionality requires us to look at structural features of not just the Western countries where they have resettled, but also the routes they have taken as refugees (Gilroy 1993). Somalis straddle multiple positions and navigate intersecting axes of domination (Collins 1991), which means that their experiences with autism are overdetermined by their racial and national othering in North America and their experiences as African refugees. A postcolonial critique of autism illustrates how racial, class, national, and cognitive biases have structured the history, research, and treatment terrains of autism.

Epistemic Communities

Long before I began this research in 2013, Somali parents of children with autism in Minneapolis and Toronto had formed support groups. At the beginning of my research, I met with leaders of these groups to determine whether this project would be feasible. I soon discovered that the support groups serve as important sites for knowledge production and dissemination. In addition to interviewing support group members, I also interviewed Somali parents of children with autism who did not attend support groups. It became clear to me that the support groups helped members establish unique epistemic communities in each location. Although people outside of the support group shared some general beliefs about autism with support group members, they were much less knowledgeable about autism, knew little about available social services, and often faced tremendous stigma. By interviewing people outside the network, I realized the strength, power, and coherence of the epistemic communities forged within the support groups. Parents share stories of their children’s experiences, their attempts to find answers, and the therapies and doctors that have helped them. Over time, an epistemic community emerged in each location, united around a definition of autism that signified their journeys as refugees and marginalized others. These shared definitions also refuted mainstream explanations and categorizations of autism, shoring up and bolstering the community’s beliefs that their experiences with autism are unique. More than simply reflecting their experiences, their illness narratives provide Somalis with epistemic, political, and therapeutic strategies for action (Kleinman 1988).

The communities forged through these support groups are epistemic because (1) they allow Somalis to adjudicate truth claims by establishing standards for demarcating veritable knowledge from false opinion, (2) they form in relation to official expertise, and (3) they are situated in diasporic epistemologies that set them apart from mainstream and alternative communities of practice. Somalis employ a realist ontology, or theory of existence. For them, multiple intersecting structural forces combine to cause autism, and these combinations are unique and beyond control and comprehension. These stratified structural forces manifest in different embodiments of autism. Somalis also subscribe to a standpoint epistemology. The standards they employ to determine truth are grounded in not just their personal, situated knowledge (Haraway 1988), but in the insights and experiences forged from their communal diasporic experiences. In the case of autism, theories of cause must explain why Somalis in the diaspora experience an epidemic of autism, an illness unknown in Somalia, in its most intense manifestation. Any expert theory or research that confirms this truth may be added to their arsenal of explanations and strategies. Further, theories of cause are multiple and hybrid because Somalis’ diasporic navigation of the world relies on their pluralism—no one standard, theory, category, or approach is enough. Truth is only found by combining multiple tactics and resources.

Two sets of literature inform my use of the term epistemic community. The term itself is borrowed from international relations scholarship on the development of policy in times of crisis.¹¹ Within this literature, an epistemic community forms among policy specialists who help governments manage uncertainty and consolidate bureaucratic power (Haas 1992a) in the face of crises like nuclear arms control (Adler 1993), free trade (Drake and Nicolaidis 1992), or ozone deterioration (Haas 1992b). They are made up of scientific elites who use orthodox approaches to scientific knowledge to engage in policy decision making (Ahu Sandal 2011). The broader scientific field is neither questioned nor brought into the analysis. I expand the concept by applying it to a lay population who unites around a common etiology and treatment protocol, based on shared experiences and a heterodox approach to health and illness. As such, not only am I expanding the scope by applying it to a lay population, but I am also showing how the Somali epistemic community is situated in a broader scientific field that is contested and unsettled.

The second set of literature that informs my use of the term epistemic community is science and technology studies. Hess (2004) argues that one of the defining features of our contemporary risk society is the blurring of distinctions between lay and expert knowledge, which means that political struggles are increasingly epistemic. Irwin and Michael trouble the very distinction between publics and science by arguing that publics are often engaged in networks of alliances with scientists, activists, and government officials (2003). They refer to these mixed groupings as ethno-epistemic assemblages. Karin Knorr Cetina (2007) coined the term epistemic culture to capture the machinery of knowledge that guides the practices of scientists. Rather than one united scientific community, there are multiple epistemic cultures within expert systems that often contradict one another.

My use of the term epistemic community draws from these existing theories to suggest that the communities of practice under analysis are not only bolstering or contesting expert knowledge, but are also forging new epistemic cultures of their own. Somalis are certainly not the first or only epistemic community within the field of autism. Parents who formed the National Society for Autistic Children (NSAC) in 1965 established an early epistemic community that led to the institutionalization of applied behavioral analysis, the current gold standard therapy for autism. In the early 1990s, a different set of parents formed Defeat Autism Now! (DAN!), which developed a biomedical approach that claimed autism was an acquired illness, curable through medical intervention. Each of these epistemic communities constituted lay-expert hybrids that sought to establish a coherent theory of causation, a set of therapies they tested on their children, and organizations to mobilize for resources and public attention.

Epistemic communities exist within a broader field of science in which multiple groups are vying for symbolic legitimacy. Because autism is highly contested and heterogeneous, it has no secure referent, and explanations for the disorder proliferate. According to Laclau and Mouffe, in the contemporary era it is exceedingly difficult for any one discursive framework to secure hegemony and suture over the complexity of meanings in circulation (1985). Rather, groups can articulate an overdetermined fix, an articulatory fixation, that attempts to order the discursive field in a partial and temporary way. Epistemic communities espouse an articulatory fixation that secures meaning and defines autism for that group. Although epistemic communities share some theories of causation (for example, vaccine injury or shifts in the gut microbiome) and treatment (for example, special diets or behavioral therapies), each articulatory fixation is structured in dominance (Althusser 1996) by a particular defining feature, which is informed by the group’s positionality in relation to scientific and professional legitimacy, as well as their social identities, like race and class. Therefore, epistemic communities and the beliefs they espouse are foundationally linked to the social location from which they emerge.

Within the contested field of autism, each epistemic community offers an explanation that is conjunctural. It includes explanatory variables shared across multiple groups (including prenatal toxic exposures, parental age, antibiotic usage, vaccines, and gut disturbances), but the unique combination of these factors and the explanation that becomes the primary modality of cause helps to shape the epistemic community. The explanations are also historically contingent. Somalis’ experiences of marginalization shape their understanding of the historical factors that enhance their children’s vulnerability, so they suggest unique causal factors that contribute to their risk, including migration, antibiotics in food and health production, disparities in health and welfare services, and the increasing number of vaccines required in the routine vaccine schedule. The positionality of the members of the community in relation to autism science, landscapes of care, and processes of racialization, as well as their own experiences, play a primary causal role in their articulations. These articulatory fixations are thus overdetermined, contingent, and partial (Laclau and Mouffe 1985).

Epistemic communities are also heterodox, and they are forged in order to garner the symbolic capital necessary to mount a critique of and movement against the mainstream approach to autism. As Bourdieu has argued, heterodoxy is only possible when groups have the "material and