The Western Disease: Contesting Autism in the Somali Diaspora [1 ed.] 022654575X, 9780226545752

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The Western Disease

The Western Disease Contesting Autism in the Somali Diaspora

C l a i r e La u r i e r D e c o t e a u

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 30 29 28 27 26 25 24 23 22 21   1 2 3 4 5 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 / ix I N TRO D U C TIO N

ONE

/ A Postcolonial Theory of Autism / 27

T WO

T H REE

F OUR

FIVE

/ The “Western Disease” / 1

/ Uneven Landscapes of Care / 67

/ Approaching Autism Otherwise / 105

/ Political and Epistemic Mobilization / 133

/ Vaccine Skepticism and the Accumulation of Distrust / 153 SIX

/ The Microbiome and Postcolonial Critique / 181 CODA

/ Centering the Margins / 211 Appendix on Methods / 217 Acknowledgments / 219 Notes / 223 References / 233 Index / 257

A bb r e v i at i o ns



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

x / Abbreviations 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

In t r o d u c t i o n

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

2 /  Introduction

bout with pneumonia, she insisted that Ali get a referral to a developmen­­ tal 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, includ­ ing eczema, allergies, sleep difficulties, gastrointestinal (GI) problems, and die­ tary 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

The “Western Disease”  /  3

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

4 /  Introduction

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

The “Western Disease”  /  5

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 Cen­ ters 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

6 /  Introduction

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

The “Western Disease”  /  7

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

8 /  Introduction

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 epi­ stemic 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

The “Western Disease”  /  9

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

10 /  Introduction

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 man­­ age 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 sci­­ entific 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

The “Western Disease”  /  11

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 as­ semblages.” 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 “epi­ stemic 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

12 /  Introduction

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, epi­ stemic 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, dispari­ ties 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 symbolic means” for establishing a critique of orthodoxy (1977: 169). Because dominant beliefs are so common-­sense, it takes concerted effort and the accumulation of symbolic resources to oppose them. Epistemic communities allow Somalis to come together around a shared set of beliefs, secure allies and resources, and mount a political strategy against mainstream medicine and public health. Somalis take advantage of opportunities offered by their field position, and garner symbolic resources from relationships forged with expert communities. Each articulatory fixation shapes how autism is ontologized in bodies. Against mainstream biomedicine’s authorization of the body, Somalis construct a scientific narrative based on their biographical experiences (Kroll-­ Smith and Floyd 1997). Their social locations, environmental surroundings,

The “Western Disease”  /  13

and experiences of exclusion figure prominently in their narrations of autism, drawing attention to the “spaces where bodies and places intersect” (105). As such, Somalis incorporate race, religion, culture, and nationality into the knowledge bases and epistemic contestations in which they engage; and they insist that their marginalization is embodied, affecting the way they live with autism. In addition, the therapies they adopt change the corporeal reality of autism for their children. Star and Bowker suggest that while classification systems establish taken-­ for-­granted infrastructure, they also create interstices that certain populations must learn to cross (2000). I argue that Somalis “misfit” into existing categorical infrastructure. When they navigate the existing landscape, they engage in the epistemic labor of articulation. They highlight the conjunctural hinges that hold interlocking systems together. It is not just misfitting, but the epistemic “work” of navigation across contradictory positionalities that lends Somalis a unique view of autism. Tobin Siebers suggests that identities are epistemological constructions that provide theories for navigating the social world (2008). As such, our social locations and experiences “inhere in our [complex] embodiment,” providing knowledge about the world (23). As members of a diaspora, Somalis are uniquely positioned to call attention to postcolonial and nationalist systems of power and subordination, and to articulate the mutually constitutive relations between the two (Gilroy 1993). As such, their embodiment of borderland positionalities is transcultural in nature, and their theories of autism reveal the complicated hybridity that arises from straddling local and global matrices of inclusion and exclusion. Somalis embody paradoxical belonging. As refugees they enjoy more rights than other immigrants, but they have to obscure their own pasts to forge “official” stories required by the asylum process. They must learn the health, education, and welfare systems inside and out in order to gain access to services for their children. They must learn to perform neediness and disability in ways that make their children legible to the state and other infrastructures. They must perform a particular kind of parenthood and adopt normative ways of categorizing autism. They must do what is expected of them to garner resources and care. Some are not able to play this insider game, as I will explain in chapter 4. The support groups give parents the cultural capital to play this game. But many Somalis play the game with the detached insight of a skeptic. They do not buy into the mainstream approach to autism, and they seek out alternative movements to help them make sense of the problematic epistemologies, ontologies, and methodologies that undergird the mainstream scientific approach to autism. What I call the

14 /  Introduction

“alternative autism movement” includes multiple standpoints and organizations, but these groups are largely united around a heterodox approach to autism that considers autism an illness acquired from environmental sources that can be cured through “biomedical” treatments, including specialized diets, chelation (a metal-­extraction process), vitamin and enzyme therapies, probiotics, and hyperbaric oxygen treatment. As I will explain in chapter 3, Somalis are aware that the alternative movement partially exploits them and holds problematic presumptions about race and nationality. Navigating both the mainstream system and the alternative movement, Somalis become savvy saboteurs who forge their own unique approach to autism out of their experiences of marginality. There is no doubt that patient groups are increasingly challenging the epistemic authority of mainstream medicine and are turning toward more alternative approaches to healing (Hess 2004). Patient movements are also playing a larger role in directing scientific research and reconfiguring how scientists conceptualize disease causality and treatment (Epstein 1998; Callon and Rabeharisoa 2008; Singh 2016; Navon 2019). The “epistemic murk” (Eyal et al. 2014) that haunts the autism field is increasingly common in multiple scientific fields; and patients, parents, and health activists are demanding better care, new identities, and a transformation in the epistemic infrastructure of science. Within this newly configured health terrain, the analytic purchase of the concept of epistemic communities extends beyond the case of autism. Epistemic communities build on but differ from health social movements (Brown et al. 2004; Brown et al. 2011); biosocial groups (Rose and Novas 2005); and patient advocacy models (Rabeharisoa 2003). Epistemic communities are heterodox in nature, situated within broader field dynamics; they highlight epistemic contestations over knowledge production and focus on the ontological effects of illness beliefs and therapies. The epi­ stemic communities Somalis forge situate dislocation and marginalization not only as experiences that influence group construction, but as sites of knowledge production. This case illustrates that racial exclusion and dislocation are central reasons why people pursue contested theories of illness causation and mobilize around them.

Reconfiguring Autism By suggesting that autism never existed in Somalia and that genetic accounts of autism are therefore nonsensical, Somalis contest established truths about autism and suggest that it is social as opposed to individual in origin.

The “Western Disease”  /  15

Somalis critique the presumption that autism arises naturally and is equally distributed throughout the world. They instead suggest that the autism epidemic is caused by conditions distinctive to Western countries. This rewrites the history of autism’s emergence as a disorder. Autism has always been a fuzzy classification. It emerged from multiple origins, and its definition has fluctuated over time.12 The psychiatrist Leo Kanner (1948) first described the conditions of “early infantile autism” on the basis of a study of eleven children conducted at Johns Hopkins Hospital in 1943. One year later, the Austrian pediatrician Hans Asperger described similar behaviors (Silverman 2012). In the 1970s, Lorna Wing, a child psychiatrist and mother of an autistic girl, and Judith Gould, a child psychologist, conducted an epidemiological study of autism that expanded the category, suggesting that autism included a spectrum of behaviors and cognitive abilities (Eyal et al. 2010: 191). It was in the 1970s that autism became a formal diagnosis with three criteria: self-­isolation, an insistence on sameness, and language impairment. These were the criteria when autism was first included in the Diagnostic and Statistical Manual (DSM-­III) in 1980 (Silverman 2012: 49). Over time, autism has become a more heterogeneous condition. The spectrumification of autism was a result of both professional trends and parental activism, and its categorical broadening led to what we commonly refer to as the “autism epidemic.” In addition to its spectrumification, and the escalation in its prevalence, there has been a steady move toward scientific consensus on the genetic nature of autism. Experts first suggested that autism was likely genetic in the 1960s (Rimland 1964), and the earliest genetic studies were conducted in the 1970s (Folstein and Rutter 1977). Genetic explanations for autism have enjoyed hegemony within the field since the 1990s, when there was tremendous federal investment in genetic research (Singh 2016). Navon and Eyal argue that autism’s geneticization actually fueled its expansion as a diagnostic category (2016). For both parents and self-­advocates, autism is a biosocial identity—­a biologically shared trait that unites a group (Rose and Novas 2005) and allows them to mobilize for recognition, accommodations, therapies, and research. The Somali parents in this study, however, do not see themselves as sharing an internal biological condition with their children. Rather, they see themselves as sharing an external structural position that puts them at greater risk for environmental damage and health disparities. In this case, then, the basis of shared identity is not a biological trait but a common ex­­ perience of marginalization and injury.

16 /  Introduction

In a Somali etiology of autism, the source of autism is not individualized or situated internally or biologically (as in genetic heritability, genetic mutations, or genomic expression). Rather, autism is caused by a whole host of environmental injuries emerging from the structural conditions of the Western world. Even if these injuries settle into the body and are expressed there, the causes of autism are social in origin. Most autism experts reject the notion that there is an “autism epidemic.” Instead, they suggest that diagnostic substitution and better detection and reporting are what account for the rise in autism prevalence since the 1990s. For Somalis, autism is ontologically epidemic—­at least in Western countries. They believe the occurrence of autism in the population has risen over time due to a series of environmental and social factors associated with lifestyle, health care, and food production. Somalis are situated at the nexus of a cluster of structural dynamics resulting from immigration and racial exclusion that make them vulnerable to autism in its more disabling manifestations. They immigrated at precisely the historical period in the 1990s when autism rates started to climb. Somali refugees in both Minneapolis and Toronto are settled into high-­rise complexes in urban ghettos, and most still live in comparative poverty, reliant on the welfare system and poorly remunerated low-­skill jobs. Because of these living conditions, Somalis believe they are at greater risk for environmental toxicity and pollution, as well as being isolated from organic and healthy food sources (interviews, 8 November 2014; 15 June 2015; 19 October 2015; 7 November 2015). As mentioned at the beginning of this introduction, Adar believes Somalis are facing not just a high rate of autism, but high rates of diabetes, allergies, asthma, ADHD, and cancer. This comes from what she refers to as “toxic accumulation.” “We live in a toxic environment. The places we stay. The food we eat. All this is a part of the accumulation. The mom has a toxic body. You have toxins in your body and you give birth to a child who’s already immune-­compromised and you inject him [with vaccines] and you feed him genetically modified food. What do you expect?” (interview, 8 November 2014). Somalis face violence, racism, alienation, and segregation as well as a lack of social services, all of which make it more likely their children will develop more disabling forms of autism. Somalis resist both the imposition of Western epistemologies and categories of illness and the structural conditions of their lives in North America. Their experiences as a diasporic population provide them with a double consciousness that lends them critical purchase on both international and national systems of assimilation and exclusion, and Somalis come to embody a hybrid approach to illness that borrows from multiple transcultures (DuBois 2011; Gilroy 1993; Decoteau 2013b).

The “Western Disease”  /  17

Centering Somalis’ experiences allows me to develop a postcolonial reading of autism.13 Somalis’ beliefs about autism call attention to the diasporic routes they have taken as migrants and racialized others (Gilroy 1993). Although Somalis sometimes adopt an essentialized racial identity that highlights their non-­Western roots, their approach to autism nonetheless illustrates a diasporic straddling of Somali culture and Western categories and identities. Their narratives of autism illustrate the fact that Somalis’ subjectivities are “multiply placed and linked” (Grewal and Kaplan 1994: 235). In addition, their healing beliefs and practices are hybrid, combining pluralist therapies that are Western and African. Somalis’ identities are informed by their experiences as African refugees and as racialized others in American and Canadian racial systems, illustrating the dynamic relationship between global racial formations. In all of these ways, I read Somalis’ theories of autism contrapuntally.14 For Said, contrapuntal analysis entails recognition of “intertwined and overlapping histories” (1993: 18) that illustrate the mutually constitutive and interdependent nature of relations between the metropole and the periphery. Reading Somali narratives of autism contrapuntally means consistently holding in tension their dislocation and marginalization, their status as refugees and North American racial others, and their identities as African and Western. Given the fact that the Somalis I interviewed believe that autism is a “Western disease,” my own identity as a white middle-­class “Westerner” certainly did not go unnoticed. Several Somali parents and professionals questioned whether I should be writing a book on Somalis with autism. This is a valid critique of the project. At the same time, I developed trusting and affectionate relationships with the parents I interviewed. Many felt that their story had not received sufficient attention, and sought opportunities to gain broader voice. In this book,their stories are rendered through the lens of my analysis, which is informed by my social positionality. Any inconsistencies or failures are my responsibility alone.

Transcending the Realist/Constructionist Binary In this book I treat autism as both socially constructed and ontologically real. Autism is a constructed category that has captured different people under its signifier over time. It is also what Ian Hacking refers to as an “interactive kind”—­the category interacts with the people so named such that both are causally co-­constituted (2000). And the therapies people with autism use also materially transform the embodiment of autism, often in ways that reify disparities. In this sense, autism is interactive because it overlaps with

18 /  Introduction

and is overdetermined by the material effects of other social constructs like race, class, ability, and gender. As such, autism is a conjunctural and contingent category. It exists within a complex terrain—­informed by education, disability, and medical systems; hotly debated within an emerging field of experts and advocates; and lived by people in a wide array of settings, with an immensely diverse set of symptoms and abilities. My account straddles the real/constructed binary and argues that autism’s emergence relies upon a conjuncture of causal factors, that it is materialized in the body in profoundly contingent yet absolutely real ways, that its public and cultural significance is shaped by economic logics and cultural values (Martin 2007), and that the shifts in its prevalence and treatment are saturated with racialized presumptions and biases (Metzl 2009). I analyze how the ontology of autism (through its complex embodiment and institutionalization) is constituted in often contradictory ways over time and among different constituency groups. Examining diagnostic emergence from the perspective of those who have been marginalized, whose knowledge is considered heterodox, and whose conceptualization of autism is unauthorized, offers new insight into the complexities of how diagnosis operates as a cultural and structural force, and is taken up and used by the people so named. Part of this dual attention to epistemology and ontology entails grappling with autism as both a category and a lived experience. Prevalence rates have steadily risen over the past thirty years in part because autism has been turned into a spectrum, capturing manifold conditions and behaviors under one label. And yet, with autism, impairment is not randomly distributed. Those who experience worse outcomes and have more robust service needs often confront barriers because of racism, capitalism, and colonialism. Differences in impairment undercut the spectrumification of autism. People with autism are often clumped into one of two categories: “high-­ functioning” versus “low-­functioning.” Those considered “low-­functioning” usually have an accompanying intellectual disability (associated with an IQ below 70), are nonverbal, and exhibit behaviors like aggression and self-­ injury. Those considered “high-­functioning” often have normal or above-­ average intelligence and extremely developed language skills. Many scholars, activists, and self-­advocates criticize the binarization of autism. But the distinction between “low” and “high” “functioning” still structures the field of autism provision and circulates widely in cultural representations of autism. And some who seek to transgress the binary end by implicitly reifying it. “Neurodiverse” is a label taken on by autistic self-­advocates who have forged a social movement arguing that autism is a marginalized identity

The “Western Disease”  /  19

category, like race and gender.15 The precedents of the movement are the antipsychiatry and psychiatric patient liberation movements (Boundy 2008). The neurodiversity movement emerged at a historical moment (in the 1990s) when psychoanalytic theories of autism were declining, and genetic and neurological theories were gaining dominance (Nadesan 2005). Members of the movement argue that autism is a “natural” variation in humans and should not, therefore, be the target of normalization efforts (Bumiller 2008; Orsini 2009; Kapp et al. 2013). As such, activists reject treatment interventions—­from behavioral therapies to special diets and chelation. The neurodiversity movement draws from a disability studies approach that criticizes the “medical model” of disability wherein disability is treated as a deficit to be corrected or cured. Instead, the movement embraces a “social model” of disability, which suggests that disability is a construct emerging out of structural constraints and inaccessible infrastructure (Kapp et al. 2013). For neurodiversity activists, autism is embraced and celebrated as a positive trait that contributes to our diversity as humans. Yet neurodiversity activists, unlike race, gender, and sexuality scholars and activists, seek to essentialize difference by claiming the naturalness of neurological variance in an effort to avoid pathologization (Ortega 2009). They therefore support the growing geneticization of autism. In addition, though some neurodiversity activists have sought to erase the distinction between “high” and “low” functioning, others have embraced the label of high-­ functioning autistic (Bagatell 2010). The movement is widely criticized for at worst ostracizing and at best simply not representing the needs of those who are nonverbal or who have intellectual disabilities (Hacking 2013). Many of the parents in this study are critical of the neurodiversity movement for precisely these reasons: they feel that it is not inclusive of children who are nonverbal, have low cognitive function, suffer from physical distress and comorbidities, and often injure themselves and others. And higher levels of impairment are more likely among people marginalized by race, class and nationality. Fatima explains that people with “high-­functioning autism” or Asperger’s don’t see the severity of autism. I would like those people actually to come and visit some of the parents, and especially immigrant parents that we have here, to see what they are dealing [with], and let them actually then say, “OK, leave them alone.” . . . We have children who are actually chained in the school bus, that the principals have the keys because you can’t control their behavior. We have . . . children who died [because] they don’t understand the safety. . . . They can’t advocate for all children [with] autism (interview, 11 July 2015).

20 /  Introduction

I once asked Adar and Idman if they knew of the neurodiversity movement and its critique of curative approaches to autism, and they replied that of course they had encountered people in this movement and knew of this critique. They replied: adar: They [neurodiversity activists] don’t understand. They’re normal. They can function. They can have a job. The only issue they have is socialization. Our kids are really sick. idman: This is different. . . . They are high-­functioning . . . adar: They can go to college, university, and do all those things. Our kids, they can’t sleep, they can’t eat. They cannot, you know, function well. They cry all the time. They’re miserable. . . . What kind of human being are you when you’re watching somebody who’s suffering, somebody who’s crying, miserable? You can see it. He’s sick. I’m watching them and you’re saying this is genetic and just forget it? You can’t do that. You are heartless and a cold person if you do that. Our kids are really sick (interview, 8 November 2014).

When the autistic self-­advocacy movement was first gaining ground, it often faced off against parent organizations. This friction has grown over the years, resulting in what some scholars have labeled the “autism wars” (Orsini 2009; Hart 2014). The battleground is represented as taking place between two incommensurable positions (Hart 2014). On one side there are parents of children with more disabling forms of autism who consider autism a disorder that can be ameliorated, if not wholly “defeated,” with the proper combination of therapies—­something they want for their children, so that they can live their lives to their fullest potential and without pain. These parents often seek to cure their children because their personhood is thought to be buried beneath the cloak of autism (Hart 2014). On the other side are vocal self-­advocates who celebrate autism as an identity and badge of honor, and who feel that parents are trying to normalize their children and even do damage to their real selves by forcing them, through coercive therapies, into neurotypical behaviors (Hart 2014). And yet, Hart (2014) and Silverman (2012) suggest that this polarizing view between neurodiverse activists and parents is much more muddied and complicated in the real world. Families and self-­advocates traverse these opposing ideologies in their everyday lives (Hart 2014). Hart argues that many parents both recognize the tremendous gifts their children have and try to ameliorate certain conditions or behaviors to help their children live in the world.

The “Western Disease”  /  21

I found similar results in my own study. Somali parents who take a more active interventionist approach to their children’s therapies also celebrate the gifts they have as people with autism. They seek to make their children’s lives easier by teaching them skills, and hope to alleviate their pain and comorbidities. Somalis also emphasize the importance of their children learning to communicate so that they can become more autonomous, and not wholly reliant on their parents. This is particularly important, as the parents fear what will happen to their children as they age out of the education system and the parents themselves become elderly. Somali parents want to help their children, but their efforts are normalizing and they do seek to “recover” their children from autism. Many struggle to accept their children’s disabilities. As evidenced in the quotes above, the parents in this study utilize the term “severity” to indicate traits like nonverbal communication, aggression and self-­injury, and cognitive disability. When I quote from the parents, I retain this language. In my own analysis, however, I employ descriptors like “more disabling” or “higher service needs” to highlight the social and structural causes of disability but to nonetheless signal the embodied challenges associated with impairment. I also avoid the medical language of “function.” Autism is a social construct that emerges out of a conjuncture of structural and cultural dynamics and gets materialized differently in bodies, based on approaches to therapy and ideologies of etiology. However, there is no denying that people with autism face different levels of impairment—­ often exacerbated by tremendous inequalities associated with race, class, and nationality. People of color and people with more disabling forms of autism (groups that often overlap) have been left out of clinical trials, autobiographical accounts, and social movements. They are absent from the research, public narrative, and categorization of autism. People of color, working-­class people, and people with higher service needs have been rendered invisible in the making of autism. This book seeks to tell their stories and highlight the battles they have waged in order to refocus the narrative of autism on the margins.

Confronting Heterodoxy Somalis espouse beliefs that may anger readers. Obviously, one of the most controversial theories they support concerns vaccine injury. I began researching autism in part due to a conversation with a friend who had decided not to vaccinate her children. I found myself getting into a heated

22 /  Introduction

argument with her, and later wondered why her resolve had caused me such consternation. Now, I confront that anger every time I present my research. Congressional hearings, Institute of Medicine studies, and the Omnibus Autism Proceedings of the National Vaccine Injury Compensation Program were all dedicated to exploring whether vaccine injury is linked to the development of autism. And since the late 2000s, there has been widespread scientific consensus that childhood vaccinations pose no risk for autism. Nonetheless, parents throughout North America, from widely diverse backgrounds, harbor concerns about the safety of vaccinations, specifically related to autism. Even though I am a proponent of vaccination, I find it sociologically unsettling that public health professionals, academics, doctors, journalists, and policymakers are so quick to dismiss vaccine skepticism as irrational and downright senseless. If so many people experience apprehension and delay vaccination, this deserves our serious attention, and I have given this question earnest thought and analysis in this book. Although the media portrays vaccine skeptics as unknowing or irrational, the vaccine skeptics I interviewed had thought long and hard about their beliefs. They have had to, in the face of great opprobrium. Other views expressed in this book may also discomfort readers. Some might balk at the claim Somalis make that autism is a Western disease, or that the scientific enterprise has colonial/neocolonial and racist/eugenic features. Other readers may cringe at the curative approach Somalis take toward their children with autism. This book may force readers to contend with beliefs they find disquieting or consider untrue. And yet there are two reasons to contend seriously with heterodox ideas. First, it is exceedingly important for ethnographers to perceive the world through the lenses of those we study. In order to render perceptible the causal forces operating in peoples’ lives, we must grapple with the ontologies they forge from their experiences. Peoples’ explanations and claims to truth must always be situated in a broader structural context to understand how the power systems within which they are positioned explain their beliefs and ontologies. Second, there is both epistemic and political value in excavating the subjugated knowledges that challenge authorized, scientific discourse. Taking up the case of a group that has been marginalized and excluded from the narrative of autism unveils institutional inequality, historical distrust, and the rebiologization of racial difference. Somalis show us that autism is an exclusionary category. They critique the imperial imposition of Western categories of thought and ontologies of the body onto populations around the world, they insist that scientific racism inheres in Western knowledge and

The “Western Disease”  /  23

biomedical practice, and they illustrate the ongoing perpetuation of racial disparities. Their case demonstrates precisely how autism became a white disorder, and how this manifests in diagnostic and therapeutic disparities. Taking a lesson from Foucault (1972; 1997), this book is archaeological in that it unearths the complex ways in which certain truths about autism instantiate inequality; and it is genealogical because it excavates knowledges that have been subjugated. Though Somalis’ heterodoxy may anger or frustrate, I invite readers to step inside Somalis’ worldview and grapple with their beliefs about autism, to gain a valuable critical account of Western knowledge formation and the scientific enterprise.

Outline of This Book Overall, this book centers the experiences of Somali immigrants as a way to interrogate autism advocacy, research, and politics. This is the first book about autism in North America to explore the racial, class, and national implications of autism etiology and politics. Just as feminists and race scholars have challenged sociological epistemology, suggesting that the silencing of marginalized standpoints delimits the discipline’s scope and viability, postcolonial scholarship suggests that centering sociological analysis within the global periphery and diaspora forces a reconsideration of core disciplinary epistemologies and methodologies. This book offers a postcolonial rereading of autism by centering diasporic experiences of illness as sites of knowledge production. The first three empirical chapters analyze the ways in which Somalis’ experiences with migration, health disparities, and the alternative autism movement inform their theories of autism in both Canada and the United States. In other words, the chapters illustrate how certain influences hold constant across the two national contexts. Chapter 1 explains how Somalis’ experiences of migration, resettlement, and diasporic straddling figure into their approaches to autism. Somalis struggle to reconcile their cultural beliefs and ontologies of the body with the labels they are required to adopt to access services for their children. As refugees, they have access to more resources than other immigrants, and yet their belonging is contingent and contradictory. They are given inclusionary entitlements but are materially excluded from accessing proper housing, education, health care, and employment. In response to this paradoxical belonging, Somalis engage in a politics of distinction; they distance themselves from other marginalized groups in Canada and the United States, and insist that they experience autism differently than other North Americans.

24 /  Introduction

Chapter 2 illustrates how autism services subtly exclude people marginalized by class, race, and nationality. White middle-­class parents advocated for greater access to therapeutic services for autism, and governments responded with crisis-­driven programming. These two dynamics came to shape the institutional landscape of autism care, leading to profound racial disparities. Parental activism around autism served to reconfigure expertise and provide a more heterogeneous terrain of services. However, institutional divides between the medical and education system, and between mental health and developmental disability, are durable, overdetermined by race and class divisions. Autism has been rendered a spectrum, but services remain bifurcated, fragmented, and exclusionary. The chapter provides examples of the health disparities Somalis face in accessing both diagnostic and treatment services for their children with autism. Chapter 3 explores how Somalis engage with the alternative autism movement. Using complementary or alternative therapies is common among parents of children with autism, and many of the theories and therapies Somalis adopt are borrowed from this movement. The chapter explains why parents of all backgrounds are drawn to such approaches. It provides some history of this movement and the contours of its epistemologies and ontologies. It then moves on to explain how Somalis are “outsiders within” these movements because of the movement’s problematic theories of race, nationality, and “progress.” I suggest that Somalis’ experiences of “misfitting” within this movement illuminate a postcolonial critique of autism. The final three empirical chapters of the book draw out the case comparison between Toronto and Minneapolis. Each chapter illustrates how the epistemic communities in these locations diverge and take up different causal theories as their defining feature. Chapter 4 describes how the racial formations and public health approaches in Canada and the United States differentially inform the content and scope of Somalis’ epistemic communities. The chapter explains how expert involvement in the Somali communities and the racial politics of the two cities shape the outcome of each epistemic mobilization. Some Somalis in Minneapolis forged collaborative projects with local public health officials, and others took up vaccine skepticism in defiance of these collaborations. In Toronto, Somalis’ failure to secure broader resources and attention lent them greater epistemic freedom to pursue cutting-­edge research on the microbiome. Chapter 5 explores how contestations around vaccines have affected the Somali community in Minneapolis. Concerns about vaccination in Minne­ apolis circulate, very specifically, around whether the measles, mumps, and rubella (MMR) vaccine plays a role in the development of autism. Many

The “Western Disease”  /  25

Somalis are not opposed to vaccination and take a pragmatic approach to the MMR; they wait until their children speak to give them the vaccine. Other Somalis are more avowedly vaccine hesitant, and choose not to give their children any recommended vaccines. This chapter critiques the implicit racialization within public health presumptions about vaccine noncompliance. Rather than resulting from a knowledge deficit or barrier to access, Somalis’ resistance to vaccination stems from an embodied distrust of biomedicine, informed by historic practices of scientific racism and racist interactions with health care professionals. Chapter 6 begins by explaining the prevalence of gut disorders among Somali children with autism in Toronto. When parents changed their children’s diets, their behaviors improved. Because of this experience, theories of the microbiome attracted members of the Somali support group. Somali families subsequently teamed up with a microbiologist and a psychiatric neuroscientist to conduct research on how shifts in the diversity of gut microbiota may increase vulnerability to autism. The chapter both explores and critiques microbial theories of autism causation, while putting these theories in conversation with scholarship on the biosocial implications of epigenetic and genomic styles of thought. The book ends by revisiting the stakes of analyzing autism from the perspective of racially and nationally marginalized populations. Centering the experiences of those heretofore marginalized in the narration of autism unveils disparities, omissions, and subjugated knowledges in autism’s institutionalization as a white middle-­class disorder. Somalis ask us to consider autism a disorder caused by Western health and food production, ways of life, and approaches to healing, rather than an individualized genetic trait or a natural brain development. In so doing, Somalis critique Western environmental conditions, political economies of health and agriculture, and systems of racialization. The conclusion takes these critiques seriously and reflects on the implications of such a radical retelling of autism.

ONE

A Postcolonial Theory of Autism

When her son with autism was young, Safia Gassem constantly fought the Toronto District School Board because they were not integrating him with his neurotypical peers. She felt that the restrictive environment in the classroom mimicked the isolation he experienced from autism, and that interacting with other children would reduce his anxiety. When he was eight, she gave up the battle and decided to move her whole family to Somalia. I took him to Somalia . . . to have integration because the school, they weren’t giving an opportunity to integrate with other children. . . . The behavior was gone when I took him to Somalia because there’s no artificial . . . There is no junk food. Everything’s natural. . . . That woke me up. My son, when I took him there, the behavior is gone. After a few months, he had natural detoxification. . . . After six years, I came back [to Toronto]. The first week, the behavior is there that I left (interview, 3 June 2015).

Upon returning to Toronto after six years in Somalia, her son’s more serious behaviors returned. Although retoxification would likely take longer than a week, Safia’s sense that the change was abrupt illustrates the intensity of the shift in her son’s behavior. This experience “woke her up.” She realized that autism was caused by environmental exposures, and that her son was very sensitive to environmental triggers. Safia believes her son suffers from a “leaky gut,” and that sugar, casein, and additives negatively affect his behavior; so she cut those items from his diet. Whatever I buy, no GMO, genetic modified. I don’t want it. No artificial flavor. No preservative. I try to rule out any of these man‑made . . . chemicals.

28 / Chapter One [Laughter] My son is very sensitive to these man‑made chemicals. . . . If I give him junk food, he becomes violent (interview, 3 June 2015).

Instead, she gives him organic fruit, vegetables and proteins. The stakes of finding a way to ameliorate her son’s violent behaviors are high. Safia is a short, stout woman, barely over five feet tall, and when I met her son in 2015 he was eighteen years old, and well over six feet tall and two hundred pounds. When he eats junk food, he becomes “difficult to control.” Some of his behaviors have caused damage to the house. For example, she told me he really likes to jump from the landing down the last flight of six stairs, crashing into the opposing wall three feet away. They have had the wall replastered on multiple occasions. I met her son after he came home from school. He is nonverbal, so he did not speak to me, but he was clearly upset at having a stranger in his home. He quickly cleaned the space where we were sitting. He replaced items we had moved during the interview, put food back in the kitchen, and handed me all of my things—­my notebook, recorder, and purse—­to return the space to its proper order. This calmed him slightly, as did seeking out affection and reassurance from his mother, whom he tackled onto the couch in a bear hug multiple times while we were finishing up. Safia told me one of the biggest struggles her family faces is that her autistic son cannot travel in the car because it upsets him. He becomes violent—­hitting himself, rocking so forcibly that the whole car shakes—­and everyone inside is at risk of being hit or having an accident. The bus is no better: school officials restrain him for the ride to and from school. Not being able to travel with your child is a mundane but consequential limitation that leads to isolation and tremendous challenges. Luckily, her two younger sons can run errands, but when her autistic child has a doctor’s appointment or educational assessment, or when there is some other reason he must be transported, she fears for his and her own safety. Safia struggles mightily every day to ensure the welfare of all three of her sons. Changing her autistic son’s diet is one strategy she has found that helps ameliorate the more dangerous behaviors. Safia believes that autism made her son more sensitive to environmental toxins and more prone to allergies. Autism may be genetic, Safia told me, but Somalis are susceptible because they are not used to this environment, so genetic traits are being triggered by environmental exposures. The environment, the poison that we are breathing, we’re eating, and the vaccine, all that damage . . . I think it’s genetic, but very sensitive to this environment. . . . In Somalia, we don’t have all this environmental toxic. . . . Maybe

A Postcolonial Theory of Autism  /  29 we are more what’s called susceptible . . . to this environment. Maybe our gene doesn’t accept this environment (interview, 10 June 2015).

Safia attempts to care for her child, who has challenging experiences of the world in large part because his needs are not accommodated by existing systems. In addition to struggles with the school system, they have experienced barriers to housing, speech, and occupational therapy. At the time of our interviews, Safia was fighting with disability services to figure out a plan for when her son can no longer attend school. She told me that Somalis have specific needs associated with their culture and religion that have been ignored by existing systems of care. Somalis fled civil war, and experienced tremendous trauma. When they came to Canada, they had nothing. And yet they are treated the same as any other immigrant, and no culturally relevant services have been provided. Safia said that her English is strong and she has an advanced degree, so she understands how to advocate for her son, but many of her compatriots do not. Navigating an insensitive system is particularly difficult for Somalis whose children have disabilities. Further, systemic failures in accommodation exacerbate the challenges that children with autism face. Safia is not a member of the Toronto support group, so I was surprised at the similarity between her beliefs and those of the mothers in the group. Her theories about autism stem from closely observing her son, seeing changes when she took him to Somalia, and getting results from altering his diet. Somalis across the diaspora are linked into the same communication channels and informational networks, which may explain their shared views. Somalis in both Minneapolis and Toronto are closely tied to local refugee support organizations, which serve as hubs for organizing and hosting community events; most live in close proximity and share information while watching their children on the playground; many parents I interviewed also regularly participate in transnational conference calls where autism is frequently discussed and information on therapies is communicated.1 The mothers I interviewed shared their experiences and knowledge of autism with their compatriots throughout the diaspora, illustrating the centrality of transnational refugee networks for the distribution of vital information. In addition, Safia’s story illustrates how interactions with housing, health, education, and social services in Canada influenced her approach to autism. She received little help after her son was diagnosed. I labeled my son. Why I label? I label because I want him to have a service. You label a child because you want the service. They said to me, “You label

30 / Chapter One your child, put him through psychological assessment.” I labeled him. I want the service now . . . but no, he doesn’t get it . . . Already [I] have stress at home, then dealing with . . . the system is another stress. They put you on the waiting list. Every day, you have to call them, when I’m gonna get my service, blah‑blah‑blah (3 June 2015).

In this quote, Safia explains that she let clinical and educational experts diagnose, or “label,” her son “autistic” because they promised it would help him access services that would support him in his development. As such, Safia accepted the Western categorization of her son despite the fact that she “never saw autism in Somalia,” nor had anyone else she knew. But she accepted the label to get the services. Why does this categorization not yield the benefits it does for other families? In this chapter I illustrate how Somalis’ immigration to the United States and Canada and their “misfitting” and navigation of categories and institutions inheres in their beliefs about autism. Postcolonial scholars argue that centering a diasporic experience allows for a critique of identity politics situated in naturalized or essentialized roots. Instead, they highlight how identity is the product of shifting positionalities, of the routes we take in navigating our social worlds (Gilroy 1993; Hall 1994). For those in the diaspora, these routes expose the categorical infrastructure and inequalities in places of origin and in sites of resettlement. Diasporic identities are framed along two axes: similarity/continuity (since immigrants seek to reestablish “home” abroad by embracing shared cultural traditions) and difference/rupture (representing their experiences of dislocation and marginalization), resulting in complex hybridity (Hall 1994). The daily routes Somali refugees take force them to straddle both small ethnic enclaves where they hold fast to Somali identity and practices, and the larger bureaucratic worlds of services, supports, and state entities in Canada and the United States. While this is true for all refugees, it is particularly true for parents of children with disabilities who must “label” their children with bureaucratic diagnoses in order to access services, and who must perform parenthood and racial belonging in particular ways to be legible for state benefits. In this chapter I illustrate that Somalis’ theory of autism is postcolonial because it signifies both their diasporic straddling and their paradoxical belonging in the nations they now call home. Paradoxical belonging refers to the way Somali Canadians and Americans experience material, symbolic, and cultural exclusion even as they are extended the rights associated with citizenship. Often the performances required of them to achieve state legibility (as refugees deserving of asylum, as benefactors of social welfare, and as parents of children with disabilities)

A Postcolonial Theory of Autism  /  31

are experienced as forced assimilation to Western ways of life. Somalis work hard to fit into categories that they experience as epistemologically and ontologically violent. They also struggle to come to terms with autism. They are unfamiliar with the illness; it is foreign to them. And yet they see that their children are suffering, and so they navigate a byzantine bureaucracy with complex requirements to access services. As such, they must, as Safia explains above, “label their children.” And yet, Somalis adopt a very unique approach to autism that incorporates their own beliefs and reconfigures autism as a “Western disease,” caused by structural and environmental insults, to which they are uniquely vulnerable. They engage in what I refer to as a politics of distinction. As refugees, Somalis claim that their experiences of parenting children with autism are exceptional, markedly different from those of other racially marginalized groups and North American parents. In some ways, this is to resist incorporation into American racial categories, but it is also to resist the imposition of autism as a genetic disorder. Somalis draw on four resources to articulate what I refer to as a postcolonial theory of autism: Somali conceptions of mental distress, theories that situate environmental insults from migration as causal determinants of autism, their paradoxical belonging in the United States and Canada, and their experiences of racial othering, to which they respond with a politics of distinction. While I will elaborate on these themes throughout this chapter, here I provide a brief summary of a postcolonial approach to autism. Somalis reject genetic explanations that situate internal coding or mutations as causes. Rather than internalized mechanisms, Somalis draw on cultural resources when they suggest that autism is caused by external structural conditions intrinsic to life in Western countries. Somalis contend that environmental insults (like microbial shifts stemming from migration, as well as heightened exposure to antibiotics, genetically modified foods, sanitizers, toxins, and vaccines in their host countries) settle into the body, affecting its core systems. Many of these environmental insults are the result of the unique routes that Somalis have taken, both as forced migrants and racialized others. As a result, Somalis suggest that they do not experience autism in the same way as white North Americans; they claim distinction. The dislocation and marginalization they experience manifest in more dis­ abling forms of autism. Their migratory routes and the inequalities they face have ontological effects on their children’s bodies. While they believe their autism is unique, they must nonetheless fit into recognizable categories of disease to access services. Before providing details of the four foundations of their postcolonial critique, I offer background on Somalia and the refugee process.

32 / Chapter One

Background on Somalia During the colonial “scramble” for Africa, the Somalilands were divided into five regions: two controlled by Britain, and the rest by France, Italy, and Ethiopia. When Somalia gained independence in 1960, only two of these five regions were united into the Somali Democratic Republic.2 Ethiopia and Kenya retained control over two of the regions, and Djibouti gained independence in 1977 (Abdi 2015: 33–­35). The fate of these “missing regions” remains a source of unrest in the area. Siad Barre was in power from 1969 until his twenty-­year military dictatorship was overthrown in a coup in January 1991. Barre’s regime fomented conflict by encouraging the instantiation of clan cleavages (Kapteijns 2013: 1). After Barre was ousted from power by the United Somali Congress (USC), the country “descended into chaos” and has been embroiled in civil war ever since (Abdi 2015: 40). Clan remained a political weapon in the years following the coup—­as the USC rounded people up and terrorized them through torture, rape, humiliation, dispossession, and murder (Kap­ teijns 2013: 6). Clan is not an ancient “tribal” identification, but a modern political weapon. Some refugees fled through Yemen and traveled into either Europe or the Middle East. Most refugees, however, fled through Kenya, and Kenya still shelters the bulk of Somali refugees (Abdi 2015: 42–­43). According to the United Nations High Commissioner for Refugees (UNHCR), as of 30 June 2019 there are 2.8 million displaced Somalis: 2,648,000 internally displaced inside Somalia, and 949,700 refugees and asylum seekers (80 percent of whom reside in neighboring African countries; UNHCR 2019). Somalis were reticent to share details of their migration with me. When I asked, they matter-­of-­factly told me when they had immigrated and which family members they had joined or brought along. They rarely shared more information, and I did not press them. I took their silence to be a sign of trauma or distrust or both. States granting asylum necessarily misrecognize the actual trauma Somalis have experienced, replacing it with a “univocal autobiographical narrative” required for granting access and services (Giordano 2014: 7, 11). As I illustrate throughout this book, the diagnosis of autism enacts a similar process of translation, because it requires people to adopt a particular knowledge system and categorization in order to be legible and receive services. Such translations gloss over and obscure how illness categories reflect Somalis’ unique biographies. Some of the Somalis who held leadership roles in the support groups of Toronto and Minneapolis were from higher class backgrounds, and had

A Postcolonial Theory of Autism  /  33

either escaped the civil unrest early on or were already outside Somalia pursuing advanced degrees. Others likely experienced a great deal of trauma but were not prepared to discuss it with me. Of the people I interviewed, the more recent immigrants, who spoke less English and were far less stable in their resettlement, often shared their experiences living in the camps. In October 2015 I interviewed Hodan, who had just moved to Minneapolis from Houston, where she had been settled the year before. In the 1990s she had lived in Mogadishu; she said there had been “too much war in the area where she was living,” and she feared daily for her family’s lives (interview, 9 October 2015). She and her family had moved around a lot to avoid the gunfire. During one such move, her nine-­month-­old son had fallen from the sling she used to carry him, and lost consciousness.3 They eventually settled in an Ethiopian refugee camp, where a doctor finally examined her son, who was now paralyzed. In the refugee camp, Hodan carried him ev­ erywhere she went, because there was no medical care or wheelchair. She worked as an informal maid and took her son to work with her. “I couldn’t afford anything,” she remembered. “He could only drink milk and I could not always supply him with it because I had no money. Thank God I am now living in a country with a governing system, with doctors.” She is now disabled from the chronic back pain she suffered carrying her growing son for seven years while she sought shelter, lived and worked in the camp, and awaited resettlement. She was given priority for resettlement because of her son’s disability; but even with this prioritization, she waited five years from the time she filed her paperwork until she was resettled in Houston. Naiima Jimaale and her husband fled to Saudi Arabia in 2005 to escape the violence in Somalia. They had five children there, two of whom would receive autism diagnoses. One day in 2007 when her husband was returning from work, the police arrested him for living in the country without proper documentation. The entire family was sent back to Somalia. Her husband managed to put together the money to send her and their five children to Turkey in 2008. He stayed behind in Somalia and eventually made his way to Ethiopia to seek asylum. In 2009, Naiima’s four-­year-­old son opened a third-­floor window and jumped out. In the emergency room the doctor asked why her son did not speak, and she replied that she did not know. The ER doctor told her he suspected autism, but she had never heard of the illness. He helped her get an official diagnosis. Out of the parents I interviewed, this is the only story I heard of a child diagnosed with autism prior to arrival in North America. In fact, Naiima was able to apply for refugee status because of her son’s disability, and she and her five children were sent to Oregon in 2012. After ten months they moved to Minneapolis, and she

34 / Chapter One

received an autism diagnosis for her daughter as well. Her husband remains behind in Ethiopia awaiting family reunification. Fartun Weli runs a health advocacy organization in Minnesota for Somalis. She told me that in the refugee camps in Kenya and Ethiopia, rumors circulate about an unknown illness which keeps children from speaking, is caused by vaccinations, and is prevalent among Somalis in Western countries (interview, 17 September 2015). This gossip is believed because Somalis already hold deep suspicion of the entrenched racism in Western health care, as I will explain in chapter 5. The fact that Somalis hear of autism in refugee camps before resettlement illustrates the strength of transnational networks and the flow of information throughout the diaspora. Though life in North America is a dream that only a very few will realize, expectations of that life are mixed with fear and longing.

Becoming a Refugee To claim refugee status, one must flee one’s country of origin by crossing an international border and tell a consistent and compelling story of persecution (Yusuf Abdi interview, Lutheran Social Services of Minnesota, 14 October 2015).4 UNHCR is responsible for the transfer of refugees from a country of initial asylum (like Kenya, in the case of Somalis) to another state that agrees to permanently settle them and ultimately offer citizenship. However, many refugees wait twenty to twenty-­five years in unstable conditions before even being considered for resettlement, and the vast majority of refugees will never be resettled in a permanent location. Refugees seek resettlement from outside of the host country through the UNHCR, and asylum seekers submit applications for asylum after arriving in a country’s territory. Family reunification is an additional means of attaining refugee status in which already settled refugees or asylees sponsor their immediate family members.5 Accomplishing resettlement is extremely difficult and entails multiple security screenings, health examinations, interviews, background checks, and DNA testing.6 The UNHCR calls refugees the “most closely scrutinized population on earth” (Diamond 2015). The refugee and asylum programs in the United States and Canada are heralded as tremendous humanitarian accomplishments, yet both are imperiled by nationalist concerns. Despite complex screening procedures, the international refugee and asylum programs have come under attack in recent years because of concerns over terrorism. The January 2015 Paris attacks brought media and public scrutiny to these programs, even though none of the conspirators were refugees. When Donald Trump became president of

A Postcolonial Theory of Autism  /  35

Figure 1.1  Numbers of Somalis resettled through UNHCR in the United States and Canada, 2003–­18. Source: UNHCR 2018a and 2018b.

the United States, he attacked the resettlement program, instigated a Muslim ban that included Somalia, and all but halted the US acceptance of refugees and asylum seekers (Liptak and Shear 2018; Taub and Fisher 2019). While the Canadian program is celebrated worldwide for providing a clearer pathway to citizenship than the US program (Bloemraad 2006: 13, 132), Canada also deters asylum seekers from reaching its shores and prioritizes refugees who “can adapt to the Canadian labour market” (Hamlin 2014; Knowles 1992). Therefore, both programs are contravened and undermined by economic, security, and political interests. Figure 1.1 indicates how many Somalis have been resettled in the United States and Canada from 2003 through 2018. US Refugee Policy Refugee policies in the United States were initially created to provide asylum to groups fleeing communist regimes (Bloemraad 2006: 127; Hamlin 2014). The Refugee Act of 1980 codified refugee status by adopting the UN

36 / Chapter One

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Figure 1.2  Approvals of Somali permanent residents in the United States, 1990–­2014. Source: US Department of Homeland Security 2014.

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Figure 1.3  Somali refugees in Minnesota, 1990–­2014. Source: Minnesota Department of Health 2014c.

definition of a refugee (see note 4) and establishing a coherent settlement program (Abdi 2015: 173). The act launched the Refugee Cash Assistance program, which made the federal government responsible for supporting refugees and charged states with administering settlement programs (Bloemraad 2006: 128–­29).7 Refugees must apply for lawful permanent resident status (LPR) one year after being admitted to the United States;

A Postcolonial Theory of Autism  /  37

asylees can but are not required to adjust to LPR after one year. Citizenship can be obtained after five years. Figure 1.2 indicates the number of Somalis who were approved for permanent residency in the United States from 1990 to 2014, and figure 1.3 provides information on the number of refugees resettled in Minnesota from 1990 to 2014. Somali immigrants who came to the United States before the civil war were concentrated in San Diego. Somalis began moving to Minnesota for employment opportunities in rural meat packing factories (Yusuf 2012: 21–­ 25), so when Somalis were resettled after the civil war, there was already a small community in Minnesota. Minnesota remains a popular site for primary and secondary migration, a process whereby refugees settled elsewhere in the United States move to join an established community. Minnesota now has the largest Somali population in the United States. Canadian Refugee Policy and the Differential Treatment of Somalis The 1976 Immigration Act established the Canadian refugee program (Bloemraad 2006: 131). Refugees accepted through the UNHCR receive permanent residency upon arriving in Canada, and those who make in-­ land refugee claims (asylum seekers or refugee claimants) can apply for permanent residency once they are accepted as protected refugees (Bloemraad 2006: 296n74).8 Unlike in the United States, where most Somali refugees were resettled through UNHCR and family reunification, most Somalis entered Canada as refugee claimants (asylum seekers) in the 1990s. Comparing figures 1.2 and 1.4, it is obvious that Canada accepted more Somali refugees early in the Somali civil war (in the 1990s), and that the United States began to accept more Somalis in the 2000s. Overall, the United States has accepted far more Somali refugees than Canada, until recently. Although Canada is celebrated for its refugee program,9 Somalis were treated as uniquely circumspect. In 1993 an amendment to the Immigration Act (Bill C-­86) uniquely applied to Somali and Afghani refugees (OCASI 2016). All applicants had to show a passport or “satisfactory” identification to be granted landed status (permanent residence). Ostensibly, the purpose of the act was to deter immigration fraud; however, many Somali asylum seekers approved by the Immigrant and Refugee Board (IRB) were unable to attain permanent residence. Without a stable Somali government, there was no way for refugees to prove their identities (OCASI 2016). By 1999, Citizenship and Immigration Canada estimated that thirteen thousand Somalis were unable to “land” (OCASI 2016). Affected refugees could not reunite with family members abroad, access federal or provincial student loans for

38 / Chapter One

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Figure 1.4  Admissions of Somali permanent residents in Canada, 1990–­2014. Source: Citizenship & Immigration Canada 2015. Data prepared for the author.

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Figure 1.5  Admissions of Somali permanent residents in Toronto, Ontario, 1990–­2014. Source: Citizenship & Immigration Canada 2015. Data prepared for the author.

college, reenter Canada if they left, or access certain forms of employment (OCASI 2016). In 1997 a new bill, the Undocumented Convention Refugees in Canada Class, was introduced to address those without paperwork who were in limbo. They were forced to wait an additional five years to obtain permanent residence.

A Postcolonial Theory of Autism  /  39

According to Ahmed, the director of a Somali resettlement agency in Toronto, these two legal recriminations of Somalis within the refugee system “amounted to social exclusion of the population.” Somalis were treated differently than other refugees and immigrants in Canada. First there was a backlog that left many in limbo for three to four years, and then they passed a parliamentary policy that required Somalis wait an additional five years to settle. This hindered access to secondary education, the unification of families, access to work, and created tremendous stress. These are Black, Muslim refugees who already face difficulties and then there is a policy in place that says they cannot work. They were systematically isolated. . . . They then gave people work permits, but Somalis were still considered refugees and not citizens, so employers didn’t want to invest in training them. Then there were other barriers associated with being Black and Muslim. There was also stigma for being on welfare. . . . There are many services in Canada, but the Somali community was systematically isolated. Then autism adds another barrier to these previous ones (fieldnotes, 21 June 2013).

As Ahmed makes abundantly clear, the “limbo status” in which Somalis were placed for a number of years had long-­term negative effects on the population. After a group of Somalis filed a Charter challenge,10 a new Immigration and Refugee Protection Act of 2002 overturned the exceptional treatment of Somalis (OCASI 2016). Ahmed explained that when Somali families finally started “landing,” spirits were already broken and trust in the system had been lost (interview, 6 May 2015). He said that this is a primary difference between Somali Americans and Canadians: Somali Canadians have never had the luxury of believing they belong. Since the 1970s, one-­third of all immigrants and refugees arriving in Canada have settled in Toronto, which is also a primary site for secondary migration (Murdie et al. 1996; Simich et al. 2003).

Diasporic Positionality and a Postcolonial Theory of Autism Refugees are a unique population among transnational migrants and pose challenges to theories of the nation-­state. Scholars suggest that the “multiply placed and multiply linked” nature of refugee experience calls into question normative theories of identity formation that presume binary difference (Grewal and Kaplan 1994: 235). Other scholars argue that migrants serve as “strangers” who unveil the ideological boundaries of national

40 / Chapter One

identity by contravening insider/outsider distinctions (Bauman 1990; Malkki 1995). Because refugees have been forced from their homes, their resettlement often results in ambivalent inclusion in their host countries. In Minnesota, Somali refugees are exceptional and conspicuous because they so radically disrupt the racial composition of the state, but also because Minnesota prides itself on its humanitarian acceptance of refugees.11 In Ontario, due to its greater diversity, Somalis are less exposed but are also more easily ignored, especially given their initial isolation and mistreatment by the state.12 These distinct experiences matter for the kinds of epistemic communities forged in each location, which I will explain in chapter 4. Situating an analysis of autism within a diasporic community exposes and disrupts presumptions about diagnosis and the global imposition of “universal” mental health categories. Development narratives often invoke themes of biomedical salvation wherein medical progress requires and instantiates a humanitarian logic, which fuses together a material economy of development with a moral economy of care (Keller 2007: 21, 49). Contemporary mental health politics in Somalia reflect this logic. The World Health Organization indicates the catastrophic toll of the civil war on Somali mental health (2019). But international media frequently accuse Somalis of engaging in “backward” practices like chaining people with mental illness to trees, or using traditional rituals to drive out jinn.13 These accounts employ exoticizing Orientalist images to suggest that Somalis must adopt international psychiatric categories and best practices to become modern subjects. The same logic is prominent in international analyses of autism. Certain anthropological accounts celebrate families who defy their local “traditions” and seek out behavioral therapies (Daley 2004; Grinker 2007, 2015). People who fail to fully embrace DSM categories and Western therapies are said to be “in denial.” Such approaches presume that non-­Western subjects have no definitions of or strategies for contending with mental illness. Other anthropologists have shown how the adoption of Western definitions of mental distress atomizes suffering, further alienating and dehumanizing people with mental illnesses (Luhrmann 2000; Zarowsky 2000; Watters 2010). Arthur Kleinman suggests that health professionals’ imposition of disease categories simplify and obscure cultural approaches to illness by conceptualizing disease as “only . . . an alteration in biological structure or functioning” (1988: 5). This turns the clinical gaze away from the meanings patients make of their own illnesses. The “technical fixes” employed by health professionals fail because they do not deal with the suffering that illness both signifies and induces (1988).

A Postcolonial Theory of Autism  /  41

During my research in Minneapolis, it was common for Somalis and non-­Somalis working in public health and community organizations to claim that Somalis employ a binary conception of mental illness: people are either “sane” or “crazy” (interviews, 22 September 2014; 15 October 2014; 8 January 2015; 31 October 2015). This adage wields discursive force. In the mouths of Somali health workers, it illustrates their adoption of Western scientific categories. They are able to castigate their compatriots for not accepting the fact that autism did in fact exist in Somalia but was highly stigmatized, and for remaining “in denial” in the United States and Canada. In the mouths of non-­Somalis, this was a disciplinary discourse used to suggest Somalis needed to adopt Western approaches to disability to accept their autistic children and access services. A similar kind of disciplining occurs when Somalis are said to stigmatize those with autism because they are “in denial.” Many Somalis that I interviewed discussed the prevalence of stigma around autism. In our community people don’t like to be public about it. It’s a shame thing. . . . They are in denial for some reason. I don’t know why. If you see a kid with the kind of behavior [who is] not functioning that well, they say, “Well, he’s okay, she’s okay, they’re going to grow out of it.” Kind of a denial. They don’t get the help that they need. . . . I think with small communities it’s because of being labeled. . . . They don’t want to be labeled. That label is what I think bothers them (parent interview, Toronto, 15 July 2015).

A parent in Minneapolis told me that she sought out a “developmental disability” label from the evaluator at her son’s school instead of an “autism” label. She chuckles about this incident now that she is more educated about autism, but at the time she was so fearful of the stigma within her community around autism, she wanted to avoid that label at all costs (4 October 2015). I conducted focus group discussions and interviews where people refused to claim that they were dealing with autism in their household—­ despite the fact that this was a condition of their participation in the research. When asked why they were participating, people who attended focus groups explained that they had concerns about their children or were curious about why autism was so prevalent in their communities. A few people who agreed to sit for interviews on the basis of having a child with autism then refused to use the term “autism” to describe their children’s behavior. One woman told me that no one had told her anything was wrong with her child until he was nine, and that “maybe it’s autism.” But she described

42 / Chapter One

her son as nonverbal, and said that since he was a young boy, he had been a “troublemaker” who ran away from her every chance he got. A child who does not speak and who constantly runs away would catch the attention of someone in the school system and would be flagged for special services. But this parent felt so uncomfortable talking to me about autism that she explained his behavior away—­even in an interview about autism (interview, 7 November 2015). Another parent of eight children told me a rambling story about the problem behaviors of his autistic son and daughter, but shied away from using the term “autism” in the interview. He put his children in a Somali charter school to avoid an autism label, but this also meant that they were not getting services (interview, 7 November 2015). And therein lies the rub. When Somali children fail to access diagnostic and therapeutic services due to obstacles, their symptoms may be exacerbated. This is what the support groups in both Minneapolis and Toronto strive to combat. I heard countless stories of parents in the support groups approaching other parents on playgrounds, in shared apartment complexes, and in informal day care settings—­urging them to seek help for their autistic children, on the basis of behaviors they had witnessed in those public settings. And yet the language of “denial” and “stigma” is also disciplinary. It suggests that if one does not accept the DSM categorization of autism, one’s parenting is suspect. There is an implicit colonialist presumption that Somalis’ hesitation around accepting a particular categorical description of autism signifies a “backward” approach to mental illness. Somalis’ immigrant status and African origin remain unspoken but nonetheless inform discourses disparaging the high rate of stigma in their communities. And the fact that so many Somalis are vocally claiming autism and mobilizing for services does not erase this presumption of “denial.” It is quite possible that Somalis who are “in denial” are resisting particular labels for their children as a contestation against Western medical standards. But they may also be concerned about the broader intersections of ableism and racism in North American society. Parents in the support groups of Minneapolis and Toronto spoke frequently about how they often felt shamed by other parents for not keeping control of their children in public. Many spoke of how often their children were the subject of unwanted stares and glares. Some parents shrugged this off, but others restricted where they took their children because they endured too much scrutiny in public. Here is a conversation from a focus group (5 June 2014) in Toronto: asha: A lot of people, they’re not aware [of] . . . autism. . . . When we go together in the McDonald’s or when [the children are] not behaving properly, the

A Postcolonial Theory of Autism  /  43 people, they go, “excuse me, why you don’t teach your son . . . [not to] touch anything?” [Lots of sighs around the room] woman 1: It really hurts when other people disturb you [suggesting that] you don’t know how to handle your son . . . in public. adar: They don’t understand these kids are different. woman 1: It’s really frustrating. woman 2: The problem with our kids . . . [is there is nothing outwardly] show[ing] that they have autism. . . . And most people, they think they are normal. And when they do some things, they think behavior . . . we feel people . . . don’t understand us. woman 1: It makes me feel like an outsider.

In these instances, Somali parents feel as though they are being surveilled and judged as poor parents by an ableist and racist society. These intersecting systems of domination make Somalis feel overexposed to scrutiny, which is experienced as a violation of their sense of self as caring parents. The politics of “denial” are complicated, especially for a disorder that is so contested and heterogeneous. Autism’s definition and incidence is hotly debated in the public sphere and among experts and self-­advocates. Yet Somalis are targeted for being “in denial” when they stop to question its meaning and the legacy the label may have for their children. Therefore, it is important to situate discursive accusations of “denial” within a broader structural context—­ one that recognizes that questioning autism’s diagnostic validity is a privilege claimed by elite scientists and withheld from parents who may have unique ontological and epistemological orientations toward health and illness. In the rest of this chapter, I will provide information on the four dynamics that shape Somali approaches to autism, which include (1) Somali conceptions of mental health, (2) beliefs about migration and environmental risk, (3) paradoxical belonging and marginalization in Canada and the United States, and (4) experiences of racism and a politics of distinction. Because the routes Somalis have taken from Somalia through Toronto and Minneapolis inhere in their theories of autism, I refer to their approaches as postcolonial. Their diasporic positioning and paradoxical belonging inform their causal beliefs, and ultimately lead them to claim distinction in their ontologies of autism. Somali Conceptions of Mental Illness Developmental narratives that encourage Somalis to adopt Western disease categories to become modern subjects presume that Somalis have no

44 / Chapter One

conception of mental illness or distress, as do discourses that suggest Somalis who balk at labeling their children are “in denial.” Western psychiatry is a culturally specific approach to healing that ontologizes the body and its relationship to the mind in historically and culturally contingent ways. The use of psychotropic medications and the imposition of DSM or Interna­ tional Classification of Diseases (ICD) categories are often received as violent impositions on non-­Western subjects’ sense of self and community coping strategies. They also presume that people who do not accept Western categories and therapeutics have no means of explaining or healing psychological distress. And yet, Somalis have cultural resources upon which they can draw for understanding autism. I do not mean to idealize or essentialize Somali culture, or downplay the syncretic nature of Somalis’ health-­seeking behavior. In fact, Somalis have complicated relations of belonging in Somalia and North America; and while they are critical of Western medicine, they also rely on it and are informed by its ontologies. In this sense, their approaches to autism reflect a bricolage of therapeutic approaches informed by historic and contemporary practices and knowledge, combining Islamic “traditions” with “Western” therapies (Hart 2016). Nonetheless, I interviewed mental health professionals who work with the Somali community in Minneapolis, and a Somali psychotherapist, Dr. Ahmed Hassan, in order to glean a basic understanding of Somali cultural approaches to mental distress and how this might influence views on autism. Islamic medicine has long been practiced in Somalia and forms part of a pluralist approach to health. For Somalis, health involves balancing one’s relationship to Allah, jinn (spirits), community, and family. Healing may include reading the Quran, using divination, cleansing the body of evil spirits, resolving a curse of the evil eye, healing with natural herbs, traditional bone setting, and visiting a Western medical doctor (Molsa et al. 2010; Dr. Ahmed Hassan interview, 24 October 2015). Mental illness stems from multiple sources and therefore cannot be healed by a single treatment, epitomized in the Somali proverb “A sick man is advised by a hundred” (interview, 24 October 2015; Utz 2012). Patients often use multiple forms of healing, including Western medicine, for the same illness. Despite people telling me that Somalis have no language for or conceptualization of mental distress, there are a number of terms for mental illness in the Somali language; waalli is the most common term used. In her work with Somalis in eastern Ethiopia, Zarowsky (2000) found that waalli might express itself differently: as demoralization and despair (niyed jab), horror and shock (argegah), or impotent rage and a torn heart (marrora dilla’). Other terms also exist, including buufi (to be filled with air), used

A Postcolonial Theory of Autism  /  45

to describe sadness, depression, or anxiety, and murug, meaning sadness (Molsa et al. 2010). A general expression for mental distress in Somali is udurada dhimirka (illness of the mind); diiqat is used in northern Somalia (Molsa et al. 2010). It is common for Somalis to express psychological distress through somatic complaints (Kuittinen et al. 2014; Scuglik et al. 2007; Utz 2012). Dr. Hassan suggested that this caused contention for Somalis accessing Western medical care. He described several patients who had visited their general physicians for back pain or stomach illness. After their physicians ran multiple failed tests, they became frustrated and referred the Somalis to psychiatrists. Dr. Hassan said this was because Somalis are not accustomed to describing how they feel with words like “depression” or “anxiety.” Rather, if they are feeling depressed, they may say they feel heavy, and will describe this heaviness physically by saying, “My leg is heavy” or “My shoulders are heavy.” “They look for something somatic as opposed to focusing on a feeling” (interview, 24 October 2015). The Western dichotomous separation of the mind from the body impedes recognition of somatic symptoms of mental distress (David Schuchman interview, 13 October 2015). Rather than individualizing illness, Somalis often situate personal symptoms in broader social, political, and transnational structures and forces (Zarowsky 2000; Tiilikainen and Koehn 2011; Kuittinen et al. 2014). In her work on post-­traumatic stress disorder (PTSD) among Somalis in Ethiopia, Zarowsky argues that Somalis do not find PTSD a helpful category for making sense of the mental distress they have suffered due to war, dispossession, and forced migration because it individualizes harm (2000). Rather, Somalis understand the violence they have experienced in political terms. The madness it has caused is expressed as anger, as opposed to sadness or fear—­which has political valence, as it validates individuals as members of a group sharing a history of repression (383). The Western medical model, she argues, does further violence to Somalis by fragmenting their social world and erasing the threat they have faced of collective annihilation (399–­400). In their work with Somali women in Minnesota, Pavlish and colleagues found that rather than relying on a Western medical model that individualizes treatment, Somali women described their health holistically—­relating it to their productivity, their relationships with their friends and families, their communion with Allah, and their communities (2010). Mental distress was experienced as spiritual dissonance and social disconnection. This was also obvious in my interview with Dr. Hassan. He said that the mental distress Somalis have experienced stems from socio-­structural conditions (interview, 24 October 2015). He said the trauma, rape, detention, and

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dislocation that began with the civil war was then compounded by experiences associated with migration, resettlement, racial exclusion, language barriers, poverty, and isolation. He said that, once resettled, families are struggling to survive, and have such a difficult time adapting to life in the United States and Canada, that they feel socially dislocated and isolated from extended networks of kin and community. Life in the United States and Canada is extremely individualizing, and people become ontologically unmoored when they lose their close connections and experience family unrest. When doctors suggest that these issues can be resolved pharmacologically, they feel outrage. As a result, Somalis often say that medical professionals are “insensitive” and culturally inappropriate (Pavlish et al. 2010; Tiilikainen and Koehn 2011; Filippi et al. 2014). Dr. Hassan also told me that a more traditional Somali ontology of the body locates illness as an external constraint that can be remedied through Quranic study and rituals and/or traditional herbs and ceremonies. As such, he says, conceptualizing illnesses as stemming from within the body (as a Western medical model does) is foreign to Somalis’ sense of self: “It’s an outside entity that’s causing the person all of these horrible things” (interview, 24 October 2015). These conceptions of mental distress are important for unpacking Somali approaches to autism. Somalis rarely cite biological causes when asked about the etiology of autism. While they may believe that shifts in microbes and repetitive use of antibiotics put their children at risk of autism, these biological downstream triggers are nested in a broader structural explanation that ultimately points to migration as the fundamental cause of autism. For these parents, autism is caused by a whole host of environmental injuries emerging from the structural conditions of the Western world, which settle into the body. The causes are external, rather than stemming from inside the individualized mind. In addition, Somalis approach mental health not as an identity to be claimed, but rather as a condition of life that requires work and support. Children with disabilities receive therapy so they can remain connected to their families, communities, and “the “stream of life” (Helander 1995). It is hardly surprising, then, that the Somali parents I interviewed constantly sought new therapeutic and nutritional support to help their children integrate into their communities. This also helps explain their more curative approach to autism. Somalis often pursue multiple therapies to provide the best possible care for their children with autism. They approach mental health holistically, and do not separate the mind from the body, which explains Somalis’ attraction to alternative “biomedical” therapies that treat symptoms of disturbances to

A Postcolonial Theory of Autism  /  47

the metabolic, gut, immune, and cell systems. The alternative autism movement considers autism a “whole body disorder” and not simply a condition of the brain. Each of these components of Somalis’ approaches to autism will be further elucidated throughout this book. Here I simply want to flag the cultural and religious underpinning of their ontologies of autism. Migration and Environmental Risk Somalis’ experiences of migration differ on the basis of their class standing, the clan to which they belong (and whether that clan was targeted under Barre or during the civil war), when they immigrated, whether they were resettled in the United States or Canada, how long they remained in camps, and the brutality and violence they faced. I cannot possibly capture the heterogeneity of their experiences. In this section I nonetheless will show the variety of ways in which their beliefs about autism stem from their experiences of migration and resettlement in North America. Somalis interpret their migration and the environmental exposures they experience in Canada and the United States as causal factors for the development of autism. First, they suggest that “double vaccinations” are a common feature of forced migration. Because many refugees have difficulty maintaining documentation of previous vaccines, and because Western officials distrust vaccine cards provided in Somalia or refugee camps (see Lifson et al. 2001), many refugees receive the same vaccines on multiple occasions. Because there is no research on the possible negative effects of being vaccinated against the same illnesses multiple times, Somalis suggest that there is reason to be concerned that overvaccination could cause autism (fieldnotes, 20 June 2014). A second way in which Somalis’ migration figures into their understanding of autism concerns theories about shifts in their diets and the effect this may have on their microbiome (the subject of chapter 6). According to scientists in this field, migration from Somalia to Canada could shift a population’s disease profile (Sumpton and Gruner 2012; Blaser 2014). A microbiologist from the University of Guelph who works closely with the Somali community, Dr. Emma Allen-­Vercoe, explained how migration can cause disruptions and damage to the microbiome when a person is suddenly uprooted from one environment and introduced into another with a completely different ecosystem: You take a community that lives a very particular lifestyle close to the land in a very particular climate. Then, you rip that community away from those roots.

48 / Chapter One You move them to about the furthest, most opposite situation that they could possibly be, then how could there not be changes, right? Because how could there not be ecological damage there? (interview, 26 June 2015)

Migration can destabilize the microbiome as new food, climates, and medications are introduced. And then, a series of experiences can render this already vulnerable bacterial microcosm volatile. For example, because it is through vaginal delivery that the bulk of the mother’s gut bacteria are transferred to the child, children born by cesarean section may begin life with a less diverse microbiome (Neu and Rushing 2011). In addition, antibiotics introduced in repeated dosages to children at young ages can cause permanent damage by wiping out the diversity of bacteria living in the gut. This can render children’s guts vulnerable to attack by hostile or pathogenic bacteria, which might affect synaptic development in the brain (Allen-­Vercoe interview, 10 June 2014). This precise theory influenced Adar’s understanding of why her eldest son, Ali, developed autism, as explained in the introduction to this book. Adar pointed to a series of differences in environment between Canada and Somalia, including vitamin D changes, a shift in diet and lack of raw milk and grain in North American food, the overuse of pesticides and reliance on genetically modified food, and the overuse of antiseptic sanitizers and antibiotics. As I explained, she thinks Somalis are “not designed to live in this kind of climate” (interview, 12 June 2014), which accounts for the high rate of autism in the community. Some Somali parents propose a complicated theory about the timing of environmental exposure and autism vulnerability. They hypothesize that children born to parents right after they have migrated are not as vulnerable as those born after the parent has lived in North America for several years. “When children stay longer [in Canada], the body accumulates a lot of toxicity and the kids, they become autistic” (Adar interview, 8 November 2014). They call this “toxic accumulation”—­the toxins and environmental shifts need time to accumulate or settle into the bodies of the mothers before they impact offspring (Idman Roble interview, 6 June 2014). The people who have [a] child that had autism . . . had children, actually, later on. Like, for example, Idman. She had been here for seven years. After that, she had her child . . . Others . . . soon after they came, they had one or two children who are normal, and third or maybe fourth has autism. It has something to do with the longer we stay here, more likely we will get, actually, autism (Fatima Kediye interview, 11 July 2015)

A Postcolonial Theory of Autism  /  49

In fact, Dr. Allen-­Vercoe shares these views. If a Somali lady comes over to Canada and . . . is pregnant when she’s coming over or gets pregnant soon afterwards, then that baby’s probably gonna be okay. . . . The problem starts . . . when they get pregnant about a year after they’ve arrived. That’s when there’s much more likelihood (interview, 31 October 2014).

This is because the effects of migration may not be felt within the gut right away. It may take some time for the damage to settle in. For Somalis, migration is one factor involved in the development of autism, but the risks associated with migration are compounded and magnified by features associated with a Western lifestyle and the North American food and health industries. In the following focus group discussion (Toronto, 5 June 2014), parents considered this accumulation of risks. woman 1: The question is why we are seeing [autism] in [the] Western context. Why are kids getting high rates of autism in Sweden, England, everywhere we know? woman 2: Australia. woman 1: Yeah. So the only thing I can come up is the environment is the big thing. Where we come from, we have sunshine the whole . . . year. . . . [Here] we don’t have a lot of vitamin D. Umm. The food, the food we eat back home was 100 percent organic food. Here, the conventional food we eat [has] pesticide and herbicide. woman 3: Plus GMO. Genetically modified. Most of the food here. woman 1: And . . . because where we come from, we eat a lot of grain. But over here, what we know here, grain is a GMO. woman 3: In here, yeah. 100 percent. woman 1: 100 percent in North America. So the diet is, we come here long time ago, and we’re eating and we’re living in this environment of low vitamin D, all these things. . . . So lacking of vitamin D, the environment, the toxicity, our kids have a lot, a lot of toxicity in their body. woman 3: And not to mention vaccination. So all those, when you add them together, they fill the pot and that’s why our kids, they don’t stand a chance. And we don’t even get high-­functioning autistic. We get, you know, the severe forms.

For Somalis, then, migration poses a unique risk for the development of autism. It can expose children to additional vaccinations and to shifts in

50 / Chapter One

diet, climate, and medications. North America constitutes an ecosystem to which their bodies are ill-­prepared, rendering them vulnerable to neurological conditions. When Somalis blame migration for their exposure to autism, they identify their migratory route as a fundamental determinant for the development of autism. Autism, then, comes to signify their dislocation and toxicity. Somalis idealize and pine for conditions in Somalia, which they describe in romanticized terms as organic, nontoxic, sunny, and pure—­a life full of familial support and free of illness. Some Somalis I interviewed admitted that these nostalgic tales are fantastic, as I will discuss later in this chapter; but pining for idealized origins is common among refugees throughout the world (Glenn et al. 2011). It is a means of narrating the trauma and erasure they have suffered, and of documenting their exposure to toxic environmental conditions. Their diasporic dislocation is mirrored and exacerbated by the paradoxical belonging they experience as refugees, racial others, and parents of children with disabilities in their new homes. Paradoxical Belonging Hodan, whose story I told earlier in this chapter, was resettled in Houston in 2014. She separated from her husband in an Ethiopian refugee camp, but alerting the authorities that they were no longer a family unit would have delayed their resettlement. So her husband accompanied her to the United States but then abandoned Hodan and her three children. She receives no support from him. Her family was given refugee benefits in Houston: three months of cash and six months of housing. But she wanted to be closer to other Somalis, so she moved to Minneapolis. She stayed in a women’s shelter with her children for two and a half months, and the shelter provided her with food and some cash. At the shelter she met another woman who had been at the same refugee camp, who housed her while she looked for permanent housing when she could no longer stay at the shelter. The waiting list for Section 8 housing is five to ten years, so Hodan went on the waiting list but did not expect to get subsidized housing. She had to secure a job before she could find an apartment, because landlords require proof of employment. She does not speak any English. She got a job “in laundry,” where she earns eleven dollars per hour and makes $1,200 per month. She moved into a small apartment for which she pays full rent, $975 per month. She applied to the county for emergency funds because she could not afford the security deposit. She receives $120 each month in food stamps; her son gets $713 in Supplemental Security Income (SSI) and a personal

A Postcolonial Theory of Autism  /  51

care attendant (PCA) because of his disability. But he also has special needs, which cost additional money. Hodan’s apartment was immaculate but completely empty—­there was no furniture at all, except her son’s wheelchair. When I asked her whether she was happy she moved to the United States, she smiled broadly: My kids get finally school. I have doctors. It’s OK, you know, they’ll be part of the society, no worries. . . . The most important thing is to have education and . . . doctors. . . . Those are the two most important things to me. . . . What I now worry about is the rent; if I couldn’t go to work or something happened to me, who’s gonna help [with] . . . the rent? That’s what I worry about at the moment. . . . (interview, 9 October 2015).

I asked Hodan if other Somalis helped her. “No,” she responded, “but everyone has their own challenges. I have to learn the culture.” And when I asked her about the biggest challenge she faces in navigating the system of services, she said: “I couldn’t even begin the story about those kind of challenges. When you don’t speak the language, you don’t understand even one piece of paper . . . and then you might miss your appointment . . . life is not easy.” I tell this story to highlight the fact that as refugees, Somalis receive more benefits and support than other immigrants and even other poor US and Canadian citizens, and yet they still struggle to survive. In some ways, their plight is more visible to the state. They are given recognition and support, but still face often insurmountable odds to adopt a new culture and language, navigate byzantine bureaucratic services, find work and housing, and support their families. Refugees can access cultural and language support for a limited amount of time; then they are thrown into the work force, and struggle to navigate the existing terrain of services. Like other poor Americans and Canadians, Somali refugees face contradictory citizenship (Nelson 2011) and paradoxical legibility. They have the right to certain kinds of support, and enjoy a clear pathway to citizenship, but do not possess the cultural capital to navigate the social service and education landscape, and often have to perform their identities in ways they find confusing and alienating. These paradoxes of belonging are compounded by autism diagnoses because the stakes of inclusion are so much higher. This section traces how these experiences of exclusionary inclusion (Decoteau 2013a) shape Somali beliefs about autism. Because of discrimination, segregation, and struggles in finding affordable housing, Somalis in both Toronto and Minneapolis are concentrated

52 / Chapter One

in ethnic enclaves. People who speak the same language, practice the same religion, and hold similar cultural values live together, but in very poor conditions. In both cities, Somalis share high-­rise public housing units.14 In Minneapolis, the Riverside Plaza high-­rises are referred to as “Little Mogadishu” (Yusuf 2012: 29). The largest concentration of Somalis living in the United States reside in the three-­block radius that constitutes the Riverside Plaza complex (Chambers 2017: 77). Most of the buildings are dilapidated and overcrowded. Some newer buildings are modern, spacious, and subsidized, but the waiting lists for occupancy in them are very long (interview, 12 November 2015). One of the benefits of living in the Riverside Plaza is the availability of community services. There is a school, day care, and health center on site, and the Brian Coyle Community Center, which houses many Somali community organizations, is a block away. Almost all of my Somali interviewees in Toronto lived in one of three high-­rise public housing complexes just outside the city limits: the Dixon, Albion, and Falstaff Flats. The Dixon Flats are known to residents as “Little Somalia” (Thompson 1993). I visited the Dixon Flats several times to conduct interviews, and the buildings were quite ramshackle. Although

Figure 1.6  Riverside Plaza, Minneapolis. Photo by the author.

A Postcolonial Theory of Autism  /  53

Figure 1.7  Dixon Flats in Etobicoke, Canada. Photo by the author.

there was a high fence surrounding the complex and a security booth with a boom protecting the entrance, the booth was unmanned and the call box had been smashed. So I drove right in. There was a security system in each of the high-­rise towers, but so many people were coming in and out that I just walked in when someone held the door for me. One family I interviewed had five locks on their door, but had also boarded up the windows and placed a locked half-­door on both sides of their kitchen entrance. They were worried about the shoddy security in the buildings, but they were also worried about their teenage autistic son running out, jumping out of an eleventh-­floor window, or hurting himself in the kitchen (fieldnotes, 13 July 2005). Struggles over housing are compounded for parents who have children with autism, many of whom have a difficult time keeping the affordable housing they acquire because of damages to the infrastructure caused by their children’s difficult behaviors—­such as holes in the walls and broken windows. Several parents I interviewed had been evicted multiple times because of issues they faced raising children with autism. One father told me he tried to sue the city of Minneapolis for discrimination, but housing law favors landlords and not tenants who have children with

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behavioral disabilities (interview, 1 November 2015). Several other parents had difficulties because certain door locks are considered fire hazards, yet their children ran into the street if those additional locks were not added to the doors. Many families knew the police in their neighborhoods by name because they had called them so regularly to find their lost autistic children who managed to escape the house and run into the streets. Such stress leads to disputes with neighbors and landlords, not to mention tensions with the police (interviews, 7 January 2015; 3 November 2015). Ibado Arte told me she had been evicted from every house in which she lived in Minneapolis. “Because my son kept hitting the walls, and he’s very loud and he does not sleep. Day and night, he is very loud. He’s screaming, and he breaks everything in the house. . . . I’ve only lived in this house for one month, but already the landlord wants to kick me out because of all the things that have been broken” (interview, 3 November 2015). The rent is high in her current apartment because she was desperate to find housing when she was evicted from her previous place. She cried as she told me that her other children want to move to East Africa, even though they were born in the United States, because they are so tired of moving from school to school, which they do each time they move houses. When I asked if anyone in her support group could help, she said quietly, “No, everyone is in a similar situation.” She said her son with autism struggles each time they move to a new home: “He’s not gonna eat anything from the new house. He wants to go back to the old house. The first two weeks in a new house and he will not even go to the bathroom. . . . He doesn’t like the new place, the new bathroom, the new house. He won’t sit. He won’t do anything” (interview, 3 November 2015). Many Somalis prefer to live near other Somalis for a sense of community, for an ability to share community resources like mosques, and for protection (Simich et al. 2003). Some researchers found that segregated housing allows Somalis to forge networks of solidarity that serve the role extended families occupied before immigration (Boyle and Ali 2009). Marian Ahmed told me that one of the core differences between Somali and white families who have children with autism is the ability to rely on family for support. “What is different [for white mothers], then, is she might have her mother. She might live where she grew up. She might know everybody. . . . If I were to have a mother, if I were to live in Somalia, I might have so much support like she does” (interview, 9 November 2015). Somalis recognize the lack of social support as a common feature of the immigrant experience. Even interviewees with family members in Toronto or Minneapolis said they could not rely on their kin because everyone is hustling to survive. Idman

A Postcolonial Theory of Autism  /  55

explained: “This culture . . . will teach you, you have to do everything by yourself. . . . Rely on only yourself. You cannot ask every day. When I really need something, of course, I have friends, I have family, of course. They help me. But most of the time, I rely on myself” (FGD, 4 November 2014). Therefore, though it is certainly true that living in close proximity to other Somalis affords some neighborly support, that is never guaranteed. Living in the same high-­rise complex also facilitates communication about autism. One respondent said that there are so many children with autism in his building that the families have sometimes learned about services from one another (interview, 24 July 2015). Idman and Adar, who live in the Falstaff Flats, told me that they often reach out to parents whose children they see playing on the complex’s playground. When immigrants reside in ethnic enclaves, they are not required to learn English or have interactions with people outside of their community. One young father explained how isolating this is for first-­generation Somalis: The younger generation might be integrated to society, especially the ones [who got their] schooling here. . . . The older generation, the people came here after, let’s say, high school, I wouldn’t consider them to be fully integrated, because they are still about 70 percent back in the old culture and about 20 percent . . . here. They’re confused with the way the whole system works. . . . They see . . . everybody that is outside the family as someone that should not be talked to or someone that should not be met with (interview, 27 July 2015).

He suggested that the first generation had never really learned to live in Canada. Living in close proximity, then, has its benefits and obstacles. It might explain why Somalis who have children with autism share beliefs about its origins and use similar therapies. But it may also fuel greater isolation and alienation from non-­Somali parents, which may delimit Somalis’ access to services. Lack of employment, the need to be on hand for school emergencies, and the high rates of eviction and divorce among Somali families with autistic children all contribute to economic insecurity and obstacles in accessing services. In both the United States and Canada, Somalis are exceptionally impoverished, face barriers to higher education, and are reliant on social welfare.15 In both the United States and Canada, first-­generation Somalis mostly found low-­paying jobs in meatpacking, custodial services, and transportation. Many second-­generation Somalis are accessing service-­sector

56 / Chapter One

opportunities in education and health care (Abdi 2015: 188). In Canada, first-­generation Somali refugees were only given temporary work permits and did not have access to student loans, both of which created barriers to employment (OCASI 2016: 4). In Minneapolis, Somalis have made autism a business by training and employing Somali medical interpreters and personal care attendants (PCAs). Becoming a PCA is a Somali-­grown entrepreneurial enterprise (fieldnotes, 2 September 2015). Most Somali families with autistic children engage PCAs. Becoming a PCA requires minimal training, and Somalis told me they would rather have another Somali caring for their children than anyone else. Because there is no need to speak English and Somali entrepreneurs help those with little education pass the qualifying exams, becoming a PCA is a relatively common job for Somali immigrants. PCAs receive no training on specific illnesses, and I found that many were not sure what disability the child they cared for had. For example, Hodan does not have a child with autism, but her PCA referred her for an interview with me simply because her son is disabled. In addition, some parents serve as PCAs for other children when they have autistic children at home (interviews, 19 September 2015; 16 October 2014). The PCA industry, then, employs low-­skilled immigrants as well as young Somalis right out of high school, thus providing an avenue for establishing Somali-­run companies. Somalis in Minneapolis have become entrepreneurs of autism, but the same opportunities are not available in Toronto. Given the high level of poverty Somalis experience, most families in both Minneapolis and Toronto are surviving through social assistance. Cawo Abdi argues that Somali Americans experience welfare as a threat to their gender identities, which leads to feelings of alienation and a desire to return to Somalia (2015). This is compounded by their experiences of racism, xenophobia, and economic injustice. Early migrants to Canada faced challenges finding employment and were more reliant on social welfare than more recent migrants. In several interviews, Somali mothers in Canada suggested that the welfare money available in Canada is too little to support their households. Some suggested that things were better in the United States: Economically, most of [the women in the support group] . . . don’t have a job. . . . Most of us are relying on social assistance . . . which is garbage. The money’s nothing. You can’t even pay rent. . . . The United States [is] better than [Canada] because they pay the rent of the house, the apartment . . . and they get food stamp. . . . The system here, I’m not happy with it. People, they cannot go to the next level (Idman Roble interview, 30 June 2015).

A Postcolonial Theory of Autism  /  57

Even if subsidized housing is no longer available to Somali migrants in Minneapolis, many Somalis moved from Toronto to Minneapolis in search of better jobs and better chances. Many moved back when they realized life is equally difficult in both countries (Abdi 2015; Chambers 2017). Somalis who have children with autism straddle the boundaries between their ethnic enclaves and the rest of the city on a daily basis. Autism forces Somali parents to contend with and fit into systemic requirements and state projects in order to access therapies, educational accommodations, and disability provisions. This is especially true in Toronto, because there are few resources for parents of children with autism within the Somali community itself. In Minneapolis, the establishment of PCA businesses allows some Somalis to remain within the refugee community and still access services. As I will explain in the next chapter, however, this also means they are not accessing all of the therapies to which they are entitled. Somali parents struggle to teach their children how to navigate the world as people of color with disabilities when they do not fully understand how to do so themselves. This is often extremely frustrating and heart-­wrenching, and the stakes are incredibly high. The paradoxes of belonging that Somalis experience lead to their adoption of non-­normative theories of autism. They face a set of contradictions between their inclusion in state support as refugees and their material, cultural, and symbolic exclusion as poor, racialized subjects. As refugees, Somalis are offered a clearer pathway to citizenship than other migrants and unique opportunities for social support, yet they are underemployed, impoverished, undereducated, and highly segregated. This is a result of the racial and national disparities they face despite their status as refugees. In addition, racial segregation and economic insecurity produce limits on access to healthy food, overexposure to toxic environments, and barriers to the cultural capital necessary to navigate educational and therapeutic services, which I address in the next chapter. Somalis believe that their structural marginalization puts them at risk of environmental exposures that intensify their vulnerability to autism. They also face unique cultural contradictions. Somalis in Canada and the United States are provided educational supports and therapies free of charge, though they also experience tremendous racial and cultural barriers in accessing those supports. One mother told me that her son was able to access behavioral therapy, which yielded him some ability to communicate his needs. However, behavioral therapies are only provided in English, so she does not speak the same language as her son and they still face communication barriers (interview, 16 October 2014). Yusuf Samatar told me

58 / Chapter One

that he believes his son did not progress with behavioral therapies in part because they were only offered in English and he speaks Somali at home (interview, 3 October 2015). Finally, Somalis face symbolic barriers that prevent them from fitting into the categorical infrastructure that autism requires. As Safia mentioned in the story at the beginning of this chapter, some Somalis adopt Western categories for autism; they “label” their children, but are not given culturally appropriate resources and do not possess the cultural capital required to navigate bureaucratic systems of care. When Somalis do not accept labels or seek out services, their parenting is called into question and they are subject to disciplinary discourses about being “in denial.” I will return to these constraints in chapter 3. These material, cultural, and symbolic contradictions influence Somalis’ adoption of non-­normative theories of autism. Further, dislocation, marginalization, and health inequalities have ontological effects on how Somali children live with autism. The Somalis I interviewed felt that their children were more likely to be nonverbal, have higher service needs, experience cognitive delays, and develop aggressive and self-­injurious behavior because of the hardships they have faced as poor immigrants. Somalis insist that they experience autism differently than white, middle-­class North Americans, and they struggle to fit those experiences into normative diagnostic categories and disability requirements. Miranda Fricker suggests that people often suffer “epistemic injustice” when their testimonies are not read as credible, or when they suffer from experiences for which there is no legal framework (2007). Somalis endure epistemic injustice because their experiences with autism are outside the existing categorical infrastructure, and yet they must work hard to accept those definitions in order to access services. In response, Somali Canadians and Americans perform a politics of distinction (Bourdieu 1991). They refuse normative definitions of autism as a means of resisting their acculturation. I suggest that this is how they attempt to resolve their paradoxical belonging in North America. Performing Distinction Somalis recognize that they share experiences of structural racism with Black Americans and Canadians. In chapter 5 I will explain how Somali Americans come to distrust American biomedicine because of its history of scientific racism, which causes them to defy mandatory vaccinations. In addition, Somalis point to injustices they have faced as racial others and visible minorities in the education systems of Minneapolis and Toronto, in accessing autism services, and in being racially profiled by the police. In these ways, Somalis recognize

A Postcolonial Theory of Autism  /  59

they are targets of racism, and their experiences of racial exclusion are reflected in their beliefs about autism. And yet, as other research has shown (Roth 2012; Waters 2001), Somalis’ recognition of systemic racism does not always translate into solidarity with other racially marginalized groups. Their relationship to North American processes of racialization and other marginalized communities is complicated and contradictory. Like many African and West Indian immigrants to North America (Waters 2001; Roth 2012), Somalis attempt to distinguish themselves from African Americans and African Canadians, often reifying racist stereotypes. Abdi notes that Somalis not only see real differences in culture, language, and race between themselves and Black Americans, which lead to distrust, but also seek to distance themselves from the American poor (2015: 211–­12). In this sense, Somalis engage in a performance of respectability. Through their religious and gender performances, they claim more “respectability” than Black Americans and Canadians in an effort to climb up the racial hierarchies of US and Canadian society. For example, Ahmed Yusuf, a Minneapolis-­based historian and author, admits that Somalis are often “a little bit racist” in their attitudes toward Black Americans because they think of themselves as superior to Blacks, even though Black Americans paved the way for Somalis (17 September 2015). Both Abdi and Yusuf indicate that sharing limited resources at the bottom of the economic echelon and being forced into similar segregated spaces causes tensions between Somalis and Black Americans (Abdi 2015; Yusuf 2012). Several people I interviewed feared their children would experience “downward assimilation” by fitting in too well with local Black culture (Waters 2001; Portes and Zhou 1993; Abdi 2015). The first generation of Somalis, they lost their youth. . . . Their boys are in jail. . . . They’re just deviant, period, . . . while the girls are going to college. That’s not a success. If the girls are going to college, and coming and graduating, and having professions—­who is gonna marry them when their counterpart males . . . are gone? . . . The boys that were their age . . . are either dead, because of criminal [activity], they were shot or something. Or they are on drugs. Or they are just mentally—­just like the African American. We are be­ coming just the new African Americans. Even worse so. All of that, I think it’s because of the socioeconomic. The poverty. The mental health that came from back home (Mariam Egal interview, 7 January 2015; my emphasis).

Idman Roble talked about how she keeps her boys close to home and imparts a strong Muslim and Somali sense of culture because she fears “downward” integration among her children:

60 / Chapter One I’m not gonna let my sixteen-­year-­old . . . walk around and go anywhere he wants without me. . . . We don’t give them too much . . . freedom, because what we see is we [are] having more problems. . . . Family who try to be Canadian, we end up—­kids are dying every day. We have so many guns now, Somali youth have a big challenge. . . . Kids become gang [members]. . . . Now every gunshot you hear is—­every problem you hear is Somali involved. . . . What happened is what I see is a good, decent kid who turned his life the other way around. Now he’s not listening to his mom. He’s not going to school. He’s smoking weed, drinking, and he was good, good child. I see it in my building. . . . You worry about that, you let your son go different culture, and we trying to hold onto the religious side. We do Islamic study, teaching them what’s bad, what’s good, so they don’t have to do something—­killing (Idman Roble interview, 30 June 2015).

It is because of these fears of “downward assimilation” with Black Americans and Canadians that Somalis practice what I am calling a performative politics of distinction (Bourdieu 1991). Somalis in North America tend to assert their identities in terms of Islam, using it to distinguish themselves from Black Canadians and Americans (Ajrouch and Kusow 2007). The most obvious example of this is women donning the hijab (head scarf) and jalaabiib (full-­length robe; Ajrouch and Kusow 2007). Although it was not historically worn in Somalia, Somali women began wearing the hijab to protect against sexual violence under the Barre regime, during the civil war, and in refugee camps (Abdi 2007). For Somalis, the hijab is a diasporic performance. It is a means of “retaining dignity” in the face of extreme violence and a way to resist oppression in Somalia and among Somalis in the camps, but it is also a corporeal expression of distinction in the West (Abdi 2007). It is a means of critiquing conditions in the global South and North, and it signifies the routes Somali women have taken to survive both. According to some respondents, Somali women who are not religious wear the hijab (interviews, 11 July 2015; 2 October 2014). Fatima Kediye suggests that women become more and more pious in their dress the longer they live in the diaspora (interview, 11 July 2015). “It’s like the full dress became a way to show that they are Muslim enough.” But she explained that she herself started wearing the hijab to show that she was a part of the Somali community. For her, it was a statement of solidarity. In an interview, a father named Yusuf Samatar explained that religion is a way of maintaining a Somali identity even as one becomes American, something especially important to impart to younger generations:

A Postcolonial Theory of Autism  /  61 The younger generations . . . they don’t know anything else. They [only] know [the] United States. . . . Because Somalians [sic] are of [a] different religion . . . since we are Muslim, 100 percent, we have some restriction—­restraints. We can’t go all the way to the American way. . . . We always maintain partial—­not 100 percent, but at least part of our customs with religion, language, some food. . . . [But] besides that, [we are] just American. . . . We’re thinking like America. We dream like Americans (3 October 2015).

Yusuf also told me that he did not know what racism was because he has never experienced it. Or at least he was unaware that it influenced his outcomes (interview, 3 October 2015). However, this is another means of performing a politics of distinction. If one just does not know about racial violence or discrimination in a supposedly color-­blind society, then one can distance oneself from those who could not possibly ignore the ways in which they are targeted by racism. Several scholars have noted that Somalis are targeted by racial politics and policies, in part because they are so easily identifiable by dress, skin color, residential segregation, and religious traditions (Chambers 2017: 159). As such, they are even more prone to stereotyping and racial violence. As Berns McGown explains, “To cover oneself is to announce identity loudly and insistently” (1999: 78). When I asked Mariam Egal whether Somalis have experienced racism in the United States, she responded: They face discrimination because of religion. Color of their skin. Culture. Mostly because they are different. It’s not even color. You are different. You can be black, but . . . if I dress like you dress and talk like you talk, there is different racism. They feel like they are discriminated against the way they are dressed (Mariam Egal interview, 7 January 2015).

The performance of distinction is risky in xenophobic and anti-­Muslim countries like the United States and Canada. When Somalis perform distinction, they combat the paradoxes of their belonging in US and Canadian society. They seek to set themselves apart, to retain their identities as Muslim African immigrants, as a means of declaring their unique history and experiences, in the face of processes of standardization and legibility that coerce them into recognizable roles in the US and Canadian racial, class, and welfare systems. This distinction is also apparent in their views on autism. They defy how autism has been categorized and institutionalized in the West. They seek their own explanations and

62 / Chapter One

therapies—­ones that will better explain their unique vulnerabilities and experiences. For example, Somalis’ adamant belief that autism did not exist in Somalia and is caused by conditions related to life in North America means they reject genetic explanations for autism. Idman asked in an interview: “Why is it so epidemic if it’s genetic? That’s a good question, always” (8 No­ vember 2014). For Somalis, genetic explanations make no sense because autism did not exist in Somalia. In fact, Adar believes there are two kinds of autism, a genetic version and a regressive version, and that Somalis suffer from the latter, which is environmentally acquired. “I think there are two kinds of autism. The classic one, which they call Kanner’s autism, I think after the doctor who first diagnosed autism. . . . And they say it’s genetic and the child is born with it. . . . But normally, right now, what we [Somalis] get . . . [is] the regressive autism. . . . [Our children are] born healthy and then later on, they regress. And then you get the diagnosis. So that’s how it is” (FGD, 4 June 2015). She thinks this happens because white children who grow up in North America are protected from a “toxic overload” from the environment, but Somali children’s immune systems are ill-­prepared for so much toxicity, thus making them more vulnerable to neurological disorders, especially in their more disabling forms (interview, 8 November 2014). In response to their diasporic straddling of two cultures and their paradoxical belonging in North America, Somalis develop a politics of distinction, manifesting in a racialized performance of respectability and in a declaration that the form of autism they experience is different from that experienced by white North American citizens. To claim distinction is part of what I refer to as a postcolonial theory of autism. Somalis blame both migration and conditions in North America for their vulnerability to autism, and suggest that they experience autism in unique and intensified ways because of their positionality as outsiders within (Collins 1991). Before concluding, it is important to note that, like many other refugees, Somalis pine to return to their homeland. For parents of children with autism, returning home is overdetermined by hope for reversing the conditions they believe led to their children’s autism. They nonetheless recognize this impossibility.

(Re)imagining “Home” Immigrating to the United States and Canada is a rare and coveted achievement for Somali refugees, yet many of those who succeed yearn to return home to Somalia. Like most refugees who were forced to flee due to violence, first-­generation Somalis consider Somalia their true home. A survey

A Postcolonial Theory of Autism  /  63

of Somalis, Hmong, and Latinx communities in Minneapolis reported that 71 percent of Somalis indicated a desire to return home, which the other communities surveyed did not share (Horst 2006; Mattessich 2000). Abdi notes that Somalis who have settled in the United States wish to return to Somalia more than those settled elsewhere in the diaspora. She suggests that this has to do with the economic, racial, religious, and gender oppression they experience in the United States (2015). Many parents of children with autism also seek to return to Somalia because they believe the environment there is more healthful. They hope that living in Somalia will improve their children’s behaviors and chances in life. Or, as Safia’s story at the beginning of this chapter explains, they seek to avoid the institutional discrimination their children with autism experience in Canada and the United States. Out of the forty-­seven Somali families I interviewed who had children with autism, fifteen had taken their children to East Africa for a period of time. They cited several reasons: cleaner air and environment, fresher food (without genetic modification, pesticides, or herbicides), the ability to run free without being cooped up inside, and sunshine and vitamin D exposure. In a similar study based on twenty-­five interviews with Somali mothers of children with autism in Georgia, Miller-­Gairy and Mofya (2015) found that parents had low expectations of therapies in the West and felt that they needed to return to Somalia to access sunlight, better food, and a cleaner environment to improve their children’s symptoms. During a focus group in Toronto, members of the support group discussed returning to Somalia. The group was certain that if they had not been forced to flee, their children would not have developed autism. But they were equally aware of how much life in Somalia had changed. As much as they pined for their lives there, the Somalia of today would not give them the succor they desired. claire: I’ve heard people say that they’ve thought about going back to Somalia to live. adar: There’s nowhere to go back to. It’s a war-­torn country. There is no government. idman: Every day I wish I could go back home. Every day I ask Allah, God, to bring peace to the country. But there’s nowhere to go back to. It’s more expensive than here! jamilah: I took my little one there, and he was doing good. It was almost three months. He was doing good. . . . Because he was getting a lot of sunshine, vitamin D . . . eating a lot of things different. . . . It’s a good place. But you can’t stay, it’s not safe. . . .

64 / Chapter One idman: The problems are different than when I used to live there. . . . We used to eat a lot of cows and drink cow milk. Now the cows . . . eat those plastics, eat garbage, because there is no government to clean it up. . . . So people [are] get[ing] sick off the milk, the milk has bad taste. And now, if you go [to] the market, you cannot get cow milk . . . [or] cow meat. . . . They imported so many things from China. . . . The country we knew before, the food was safe . . . the food was clean. Now, the medication is not safe either . . . You know, you cannot trust them. You cannot go and live there. 100 percent. Until they clean up all those things. jamilah: And it’s gonna be too long to do that. zeynab: Yeah, yeah, it’s changed (FGD, Toronto, 4 November 2014)

This is a fascinating exchange because it shows that families who have moved to North America are aware that the place they are imagining is not the place they left. Their dreams of recuperating their former lives and identities, recovering their children from autism even, are just that: dreams.

Conclusion Postcolonial scholarship highlights the unique analytic lens offered by those living in the diaspora. Because diasporic communities exist in-­between the local and the global, and their experiences illustrate the co-­constitution of the “core” and the “periphery,” thinking from the perspective of the diaspora allows us to question multiple axes of domination and exclusion (Gilroy 1993). People living in the diaspora take on hybrid and intermixed identities—­informed by their experiences of migration and paradoxical belonging in the sites where they settle. The Somalis in this book offer us analytic purchase on both international and national epistemic processes. They help us understand the epistemic violence done by the unquestioning imposition of categories and health infrastructure designed in the West, as well as the disciplinary power of accusing communities of being “in denial.” But they also allow us to understand the forms of exclusionary inclusion offered to communities who are given citizenship but not its full rewards. Throughout this chapter I have shown how Somalis struggle to fit into, or strain against, the categorical and institutional infrastructure required of them to become refugees, receive benefits and services, and get their children recognition and support. But their misfitting into existing categories and services often leads to resistance. They deploy a complicated politics of distinction in which they set themselves apart from their class and racial counterparts through their performances of piety and

A Postcolonial Theory of Autism  /  65

gender respectability, and by distancing themselves, culturally and spatially, from Black Americans and Canadians. Their belief that autism is a “Western disease”—­a result of structural conditions and environmental insults in North America—­is another performance of distinction. They contend with and resist their paradoxical belonging by reconfiguring autism. I read their theories of autism as postcolonial because they suggest that the hyperindustrialized food and health industries in North America, to which they are ill-­prepared to adapt, render their children vulnerable to more disabling forms of autism. And they combine Somali approaches to health and the body with the knowledge they gain from navigating existing infrastructures in Canada and the United States, so their approach to autism is pluralistic and hybrid. Somalis are a very visible population—­because of their performance of distinction and because of the high rate of autism in their communities. This hypervisbility invites state surveillance of their political and religious beliefs, but also scrutiny of their parenting and health choices. This overexposure (Nelson 2011) plays into their struggles with legibility. They must accept the “labels” of refugee, of poor, and of autism to get services, but they are often mistreated and misread even when they accept the existing categories. They attempt to defy their exclusion, their misfitting, and their overexposure by rendering autism a “Western disease” and offering a structural critique of housing, welfare, and health systems in Canada and the United States.

TWO

Uneven Landscapes of Care

Autism was first declared an epidemic in 1995. The prominent psychologist Bernard Rimland, father of a child with autism and founder of both Defeat Autism Now! and the National Society of Autistic Children (NSAC), asked in the opening pages of Autism Research Review International: “Is there an autism epidemic?” He replied with a resounding “Yes” (Rimland 1995). For many, the debate about the “epidemic” of autism is about whether it is real—­whether the astounding escalation in prevalence reflects an increase in the ontological occurrence of autism or, rather, better detection and diagnostic substitution. However, these questions are intertwined. Dramatic shifts in autism’s social construction make tracing changes in its ontological manifestation impossible. The “autism epidemic” may be a social construction, but it operates with causal force in the social world. Parents feel it, and they use the discursive power the term “epidemic” signifies to push for greater attention and resources for their children. Both the US and Canadian governments have bowed to parental pressure and found ways to provide behavioral therapy to children with autism. Crisis-­driven responses to the “epidemic” have shaped the landscapes of care in both countries. Programs grew up in an ad hoc fashion and have responded reactively to parental demand. A specialist working for the Ontario Autism Program explained: The rates of incidence have climbed so fast, so the government had to react quickly. Programs had to happen overnight with very little clinical background—­we have never known enough. That’s why I refer to these [autism] programs as “programs on steroids” or patchworked together. There has never been enough time to be really strategic, they are always reacting and

68 / Chapter Two not proactive. The service structure reflects this reactive approach (interview, 9 June 2015).

Therefore, the “epidemic” has structured autism’s institutionalization. When autism is considered from the Somali perspective, the racial features of its institutionalization are exposed. In this chapter I trace how race and class privilege were structured into autism’s uneven landscapes of care, leading to exclusionary logics and profound disparities. How did this come to pass? Wealthy white parents used the language of the “looming epidemic” (Orsini 2012) to pressure governments to provide services for their children at the same time as public services were being scaled back under neoliberal pressure to reduce costs in health care, education, and disability systems. Parents mounted cost-­benefit analyses, suggesting that if governments did not provide early intervention to the increasing number of children with autism, they would be paying for extensive services for adults with high service needs down the road. Therefore, parents and governments together implemented a crisis-­driven set of policies focused on providing children behavioral therapies before they reach the age of five. This temporal emphasis on the early childhood “window of opportunity” has exclusionary ramifications that I will address throughout this chapter. Because it was wealthy white parents who were mobilizing, and because the governments responding were facing cuts in their budgets and had an incentive to privatize services, people of color, poor people, and people with more disabling forms of autism faced tremendous disparities in accessing services, as well as differentials in cognitive and behavioral outcomes. Eyal et al. (2010) and Bonnie Evans (2017) have argued that autism became epidemic because it sutured over distinctions between intellectual disabilities and mental health, thus leading to diagnostic expansion. Whereas people diagnosed with mental retardation (MR) were institutionalized (from the 1950s to the 1980s) and considered “socially incapable” of rehabilitation, people with mental illnesses (MI) were served outside institutions and deemed socially redeemable (Eyal 2013a). After deinstitutionalization, autism captured a spectrum of children with varying disorders and cognitive capacities, fusing together mental capacity distinctions, in part through the introduction of behavioral therapies that treated behaviors and improved skills rather than seeking to cure autism (Lovaas 1979; Eyal 2013a). In my review of the service terrain in Minnesota and Ontario, I illustrate how autism would not fit in education, health, or disability portfolios and was eventually given its own specialized institutional space. This supports Eyal’s argument that autism reconfigured networks of expertise

Uneven Landscapes of Care  /  69

and filled in a new therapeutic space left open after deinstitutionalization (2010). Yet I also show that institutional and categorical distinctions between health care and education, and between mental health and developmental disability, remain rigid and durable. Because of the intransigence of these divides, autism’s spectrumification is constantly undermined by the reestablishment of old partitions—­between “high-­” and “low-­functioning” and between educational, health, and therapeutic services. Those marginalized by their nationality, race, class, and impairment are trapped between these institutional siloes. Yielding to parental pressure, governments in both Ontario and Minnesota, and across the United States and Canada, made decisions about which institution—­health care, education, or disability—­would fund behavioral therapies. These jurisdictional decisions (Abbott 1988) impact the configuration of access in each location. In the United States, behavioral therapies have largely become the jurisdictional responsibility of the health care system, either through Medicaid waivers or through insurance mandates,1 which I argue reconfigured and medicalized applied behavioral analysis (ABA). In Canada, because of a series of court rulings, behavioral therapies have been deemed neither medical nor educative, requiring provincial governments to establish new institutional spaces for the provision of autism care. The fact that behavioral therapies were medicalized in the United States and not medicalized in Canada has contributed to the maintenance of disparities based on class, race, and impairment, because of the fragmented and stratified nature of American health care and the fact that autism services were not covered under Canadian national health care. This chapter takes a detour through the history of behavioral therapies and autism provision in Minneapolis and Toronto to illustrate a key argument of this book. Centering Somali experiences with autism forces us to contend with how autism has been racialized as a white disorder, entrenching disparities in diagnosis and treatment. In this chapter, I trace the historical emergence of these disparities by illustrating how because white middle-­class parents were at the forefront of struggles for access to behav­ ioral therapies, people of color, working-­class people, and people with higher service needs are consistently excluded from or treated differently within autism’s uneven landscapes of care—­thus leading to ontological differentials in levels and types of impairment. This chapter begins by providing a history of behavioral therapies and the institutional divides between education, medical, and disability systems that shaped jurisdictional battles over funding for therapeutic services. Then, I trace particular policies implemented in Ontario and Minnesota’s

70 / Chapter Two

therapeutic, education, and disability services to illustrate how exclusion often operates through institutional divides. In other words, because historic systems of care have not been fully reconfigured in the contemporary era, those who “misfit” into autism’s landscapes of care (on the basis of race, class, and impairment) fall through the cracks between the categories of mental health and developmental disability, and between the institutions of education and medicine. Somalis with autism reveal the schisms in the infrastructures of autism.

History of Behavioral Therapies There are a host of behavioral therapies now used to treat children with autism and other developmental disabilities that have their roots in operant conditioning,2 developmental education programs, and behavioral psychology.3 I focus on applied behavioral analysis (ABA) because it has risen to prominence as the “gold standard” therapy for autism, and because various versions of ABA were provided to the public in Ontario and Minnesota.4 ABA’s rise to prominence was launched with a fateful meeting between parents associated with the National Society for Autistic Children (NSAC) formed in 1965 and O. Ivan Lovaas, who conducted clinical experiments using structured behavior modification on children with autism in the mid-­1960s (Silverman 2012; Eyal 2013a). Parents enrolled their children in Lovaas’s experiments because no other therapies were available, and they were encouraged to adapt the techniques to their home environments. In fact, Lovaas believed that parents were crucial to the success of behavior modification because children could generalize skills by applying them at home (Silverman 2012: 98, 109). In ABA the focus is not on autism itself, but on a set of disaggregated “behaviors to be modified, skills to be acquired, or basic postural, vestibular, or perceptual mechanisms to be jump-­started” (Eyal 2013a: 891). ABA employs “discrete trial training,” in which behaviors are broken down into component parts and children are given positive reinforcements when tasks are accomplished. Often the task includes a verbal prompt—­for example, in identifying a color: “Touch red.” The child is given a choice board of four colors, and the therapist guides the child’s hand to the proper response a few times. Once the child can accomplish the task with just the verbal prompt, then the reinforcement is given. Tasks grow more complicated over time, and language is a primary focus (Silverman 2012: 109). Today, reinforcements might include a snack, a hug, applause, bubbles, or time to watch a video (fieldnotes, 14 and 25 April 2016).

Uneven Landscapes of Care  /  71

From the late 1960s through the 1980s, parents often employed Lovaas’s methods in their homes, and some early centers were established in parents’ homes that treated a handful of children. These programs existed alongside clinical programs run by behavioral psychologists. Parents were crucial for the success of these therapies, and they became “expert amateurs,” blurring the boundary between expert and lay populations (Silverman 2012; Eyal et al. 2010). The closing of group homes and institutions for people with mental disabilities meant that families became responsible for the education of children with disabilities. As the disability rights movement gained ground in the 1980s and 1990s, a very active, informed, and privileged group of middle-­class parents began demanding greater access to therapies and supports for children with developmental disabilities. In the United States, parents used the Individuals with Disabilities Education Act (IDEA), to which autism was added in 1991, to demand ABA coverage through school districts because it stipulated that schools must provide children with disabilities a “free and appropriate public education” (FAPE). The education system is a logical site for jurisdiction over behavioral therapies because special educators, along with occupational and speech therapists, were part of the disability rights movement and were expanding services to children with developmental disabilities throughout the 1990s. However, there has always been tension between the disability educational imperative to integrate children with disabilities into mainstream classrooms and the early intervention initiative, which emphasizes individualized and specialized services for children with autism (interviews, 18 September 2015; 23 October 2015; 2 November 2015). In addition, educators often associate ABA with early controversies around punishing children for poor behaviors (which I will explain further below), and feel that the intensive and individualized focus of ABA is impossible to achieve in classroom settings (interview with former educator and behavior analyst, 13 May 2016). This contradiction in intent between special education and ABA has endured and has largely kept ABA out of classrooms in both Canada and the United States. In the 1990s and 2000s, proactive parents pushed state, provincial, and federal governments in the United States and Canada to provide behavioral therapies. Legislators and policy makers debated which system (education, health care, welfare, disability) would claim jurisdiction and assume the financial burden of delivering what came to known as early intensive behavioral interventions (EIBI). Parents used economic logics focusing on investment in young children: if children under the age of five gain access to intensive behavioral therapies, their symptoms and needs can diminish,

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ultimately allowing them to lead more independent lives. Without access to these therapies, disability systems may become taxed caring for adults with intensive service needs throughout their lifetimes. In the rest of this chapter I will trace the history of battles for access to therapies in Ontario and Minnesota, and compare the outcomes. Gil Eyal argues that autism became “epidemic” because deinstitutionalization led to the expansion of networks of expertise which blurred previous distinctions between MR and MI, as well as between experts and laypeople (2013a), and eventually turned autism into a spectrum. There were a series of convergences that lead to this blurring of boundaries: deinstitutionalization required parents to become experts of their children to care for them at home; psychologists like Lovaas created therapies that targeted behaviors for normalization instead of seeking biological causes and cures for autism (Lovaas 1979); paraprofessionals (special educators, occupational and speech therapists, and behavioral psychologists) became the new experts of autism but remained peripheral to jurisdictional battles between fields of experts (like psychologists versus psychiatrists); autism itself blurred the bound­ aries between “socially incapable” children with MR and those who could be habilitated with MI (Eyal 2013a). While not refuting Eyal’s account, I focus my attention on the unintended consequences of middle-­class parents’ struggles to access therapies in the public sector—­durable institutional silos and stratified outcomes for people of color, poor people, and people with higher service needs—­which mark the limits of autism’s spectrumification. Once parents convinced states to invest in EIBI, behavioral therapies were subject to jurisdictional battles. The health, disability, or education system had to take on the burden of paying for services and configuring public programming. In the United States, behavioral therapies eventually came under Medicaid and health insurance systems, which required the professionalization and medicalization of behavioral therapies and contributed to ongoing racial disparities in access. In Canada, behavioral therapies were not medicalized and the provinces have taken on the onus of care, though with very uneven results. In addition, many people who “misfit” into the existing terrain of services (because of their race, class, and ability) fell through the cracks because institutional divides between mental health and developmental disabilities, and between medicine and education, remained intransigent. Although children with autism and other developmental disabilities are no longer institutionalized, decisions about whether children are habilitative, or able to cognitively “function” at a “normal” pace, still structure the landscape of disability provision, thus leading to the reification of divides between those on the lower and upper ends of the spectrum. I argue that

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poor parents, parents without the cultural capital or language skills to mobilize on behalf of their children, and children with more disabling forms of autism get caught between institutional boundaries, and are therefore excluded from access to treatment. Somalis’ dislocation, misdiagnosis, lack of access to services, and structural exclusion have ontological effects because their children remain nonverbal, often engage in violent and self-­injurious behavior, and have higher service needs. In addition, for public access to work, ABA expertise was radically reconfigured through standardization, professionalization, and in the United States, medicalization. Standardizing ABA so that it could become publicly available required the affirmation that it was “evidence-­based.” States and insurance companies required evidence that ABA was effective in clinical trials. This reliance on proven clinical effectiveness is part of a broader move to standardize medical and therapeutic interventions (Timmermans and Angell 2001). Health insurers require reimbursable clinical practices “based upon scientific evidence derived from randomized clinical trials” (Timmermans and Berg 2003: 27), and medical professionals must determine whether a treatment is “medically necessary.” Prior to the 1990s, ABA was the only behavioral therapy that had any clinical evidence supporting it. Yet states often used the excuse that ABA was not evidence-­based enough to avoid investment in the therapies. In 1987, Lovaas published a study that involved an experimental group of nineteen children (diagnosed with autism, under the age of four) who were given forty hours a week of ABA therapy for three years, and a control group of forty. After the treatment, 47 percent of the children in the experimental group “achieved normal intellectual and educational functioning,” another 40 percent had mild intellectual disabilities and were assigned to classrooms for children with slight language delays, and only 10 percent remained “severely intellectually impaired” (Lovaas 1987). Immediately, however, critics suggested that these results could not be replicated, that the sample was not randomly assigned, and that those in the experimental group had high IQs (Silverman 2012). Because the effects could not be replicated, insurance companies and state agencies refused to cover costs of ABA. As a result, parents fought to get investment in randomized clinical trials on ABA to support its “evidence base.” By 1999, the US surgeon general had declared ABA sufficiently evidence-­based, and state task forces began forming to determine the best approach for ABA provision (Larsson interview, 15 September 2015).5 In the United States, covering ABA under health insurance presented unique challenges. Training and skill building has been standardized.

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Therapists work hard to fit therapies into a medical model, while leaving out skill training that would be considered “developmental” or “educative” because these fall outside a medical mandate. A board-­certified behavioral analyst (BCBA) must oversee the work of other certified therapists, and each discrete trial is meticulously documented and reviewed on a daily if not hourly basis (interviews with BCBA in Illinois, 13 May 2016; Winnega, 6 June 2016; Larsson, 15 September 2015; and with BCBA in Minneapolis, 23 September 2015). Some long-­standing specialists are apprehensive about the increased attention to certification and monitoring, and wonder how it will affect their ability to keep a well-­trained staff once more states are required by law to provide ABA through Medicaid. I suggest that the effect of bringing behavioral therapies under insurance mandates has medicalized the techniques. Generally, medicalization refers to the domain expansion of medical expertise over increasingly more aspects of daily life (Conrad 2007). ABA, however, was situated at the border of expert jurisdiction, in the fuzzy, liminal space of paraprofessional fields (Eyal 2013b). Because of mobilizations for public access, ABA is being reconfigured as it is forced into medical and clinical infrastructure. Medicalizing ABA creates tremendous friction because, as Lovaas explained, the disease model attempts to remove autism, and the behavioral model only seeks to improve performance and language skills (1979). On the one hand, the more standardized and evidence-­based ABA becomes, the more accessible it is to people of all economic echelons. While the requirement to be evidence-­based at first stymied attempts to get ABA covered under Medicaid and health insurance, once enough evidence was gathered, standardization improved access. On the other hand, standardization is an uneven process. In the Canadian context, where autism has been professionalized but not medicalized, psychologists working for the province have had to make determinations about which children will perform the best in intensive therapies, because there is not enough space or funding to accommodate everyone who needs services. Despite the various ways in which ABA providers have engaged in “local universality” (Timmermans and Berg 1997: 275) to make the standards work in relation to existing knowledge and institutional constraints, ABA, as a specialized treatment meant to apply to any child with autism, bumps up against standardized processes required to prove its efficacy, extend accessibility, and make it a billable service. ABA has also faced two important controversies that have shaped its standardization. In 1965, Life magazine ran a story on Lovaas’s program

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titled “Screams, Slaps and Love: A Surprising, Shocking Treatment Helps Far-­Gone Mental Cripples.” This is how the article begins: Enraged bellows at the boy, then a sharp slap in the face. This deliberate, calculated harshness is part of an extraordinary new treatment for mentally crippled children. It is based on the old-­fashioned idea that the way to bring up children is to reward them when they’re good, punish them when they’re bad. At the University of California in Los Angeles, a team of researchers is applying this precept to extreme cases. They have taken on three boys and a girl with a special form of schizophrenia called autism. . . . By alternating methods of shocking roughness with persistent and loving attention, the researchers have broken through the first barriers (Moser and Grant 1965: 90).

These violent punishments—­including an electrified “shock room,” in addition to physical violence—­are referred to as “aversives.” Psychologists I interviewed provided other examples: spraying children with water, covering children’s eyes with balaclavas, and overcorrection (fieldnotes, 5 November 2014). One psychologist defended aversives and said that when legislation outlawed them, “they took away the tools we used to deal with kids with violent behaviors” (fieldnotes, 5 November 14). Many parents defended the use of aversives because some autistic behaviors lead to severe injury or death (Silverman 2012: 110). Eventually aversives were outlawed, and positive reinforcement alone was shown to be effective (Bowman and Baker 2014). Because of these controversies, parents had to fully endorse ABA for it to become accepted and widespread (Silverman 2012: 113). These controversies also propelled professionals in the field to seek scientific endorsement in the form of clinical trials. Other political contestations over ABA stem from neurodiversity activists’ critiques of behavioral therapies. As I explained in the introduction to this book, neurodiversity activists oppose ABA’s attempt to correct or cure autism, because they embrace autism as a natural expression of neurological difference. Ne’eman, for example, questions whether autistic people strive to be indistinguishable from their peers and would not rather be accepted for who they are (2010). Neurodiversity critiques of ABA contributed to the determination in Canada that it is not “medically necessary” and therefore does not fall under the purview of nationalized health care. Ultimately, the pathways taken in Canada and the United States to make ABA publicly accessible were distinct; but in both cases, white middle-­class parents shaped the landscape of care that was established. Gil Eyal argues

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that parents were brought into networks of expertise, blurring boundaries between experts and lay populations (2013a), but my case shows that only particular parents are seen as experts and are given an opportunity to participate in therapy. Hodan Abdulkadir told me that when she accessed behavioral therapy at a local center in Minneapolis, she dropped her son off and picked him up an hour later, and that she had no idea what transpired in between. Twice he came home from therapy with scratches on his hands and face, and when she confronted the center about it, they said he was injuring himself. “They won’t tell me [what] they’re gonna do it to him, and I’m not there, so how can I know? He’s not gonna tell me what did happen to him and who did this, since he’s nonverbal. I said, ‘That’s not [a] safe place for him’” (interview, 8 October 15). Although white middle-­class parents may have helped dismantle boundaries between laity and experts, those boundaries are often insurmountable for parents of color, poor families, and parents without cultural capital, who are much more likely to experience close scrutiny and moral judgments about their parenting practices. This chapter illustrates how autism was institutionalized as a white disorder, and the effects this had in creating uneven landscapes of care. In what follows, I take up different services available to children with autism (therapeutic, educational, and disability) in Toronto and Minneapolis. I highlight how these services were developed in a fragmented way and instantiated disparities. The problems that arose from crisis-­driven policy making and the fact that autism failed to fit into existing funding streams and institutional logics led to the development of autism-­specific legislation and programming in both Ontario and Minnesota. Because wealthy white families pushed for autism services, privilege is reified in the resulting terrain of care.

Therapeutic Services Minnesota Parents in Minnesota mounted economic rationales for access to early intervention therapies. Eric Larsson—­a BCBA, the executive director of clinical services at the Lovaas Institute Midwest (an ABA center), and a member of the Autism Treatment Association of Minnesota—­has for thirty years been at the forefront of struggles in helping parents access ABA therapies through private insurance, Medicaid, and the school districts. He explained that in the long run, investment in early intervention saves the state money in adult services, group homes, and hospitalization:

Uneven Landscapes of Care  /  77 The average cost across a child’s lifetime, including high and low functioning kids, is three million dollars. Once they hit group homes, they’re spending sixty to a hundred thousand dollars, and that’s just sort of a midrange of cost for adult services for the rest of their lives. . . . Are we going to spend the money now, or are we going to sort of hold the kids at arm’s length and try not to cover them when they’re easy to serve, and wait until they’re bolting in public with their clothes off? . . . The state in Minnesota averages—­even for the young kids, whether it’s ABA or not—­they’re averaging about sixty-­five thousand dollars a year of special transportation and drugs and psychiatric visits and respite care and foster care and day programming and special ed. We might as well spend it on something that’s proven to be effective than spend it on babysitting (interview, 15 September 2015).

Because autism is a heterogeneous disorder, it did not fit into the existing system; and working-­class families in particular were facing tremendous disparities, often without even knowing it. In 2001, Minnesota established Children’s Therapeutic Services and Supports (CTTS), funded by Medicaid, so that families could receive ABA and other behavioral therapies free of charge. However, this first attempt at public access included two subtle forms of exclusion. First, Medicaid bifurcates its funding between services considered habilitative and those considered rehabilitative. The term “habilitative” describes the acquisition of skills and functions for the first time, and developmental disability services fall into this classification. “Rehabilitative” describes the regaining of skills or functions a person once had and lost due to injury or illness. Mental health services are usually considered rehabilitative. Children with autism often require both kinds of services, but get lumped into one of these categories based on “function” and IQ. CTSS fell under the rubric of mental health provision, and thus only covered services deemed to be rehabilitative. Therefore, ABA providers were unable to bill for services, like potty training, that children with more dis­ abling forms of autism often require (Larsson interview, 15 September 2015). This is just one way children with intellectual disabilities or higher service needs were excluded from services because the skills they required were not reimbursable through CTSS. In fact, this became the subject of a five-­year lawsuit between parents using the Lovaas Institute and the Minnesota Department of Human Services (MDHS). Larsson told me that state employees do not think children with autism have mental illnesses, so they do not want to cover ABA services. “They somehow can form a black-­and-­white distinction between what’s mental health and what’s DD [developmental

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disability]. . . . So the battle lines are drawn around ABA and autism, but . . . it’s [really about] intellectual disabilities” (interview, 7 October 2015). Families argued that CTSS could not deny coverage to children with low IQs because Medicaid must cover all children at their level of need (Larsson interview, 15 September 2015). This reveals how binaries between developmental disability and mental health still structure autism care and disadvantage children with more disabling forms of autism. The second problem with CTSS coverage illustrates how class structured who accessed services. CTSS provided services through Medicaid.6 Families accessed ABA through a Medicaid disability exemption, for which middle-­ class families file when they are not eligible for Medicaid on the basis of income, but their private insurance does not cover all of the costs associated with their child’s disability.7 To access ABA under CTSS, families had to claim a disability exemption.8 Families who joined Medicaid on the basis of their income were given managed care, and did not know that they could claim a disability exemption and access ABA (fieldnotes, 6 October 2015; Johnson interview, 8 October 2015).9 In other words, poor families were not informed of this policy, and did not know they were eligible for ABA therapies. Therefore, different services were available to people according to the kind of medical assistance they accessed on the basis of their income. Social workers should notice that a child under managed care who receives a Supplemental Security Income (SSI) entitlement because of a disability should be given a disability exemption to access therapeutic services, but this rarely happened (Johnson interview, 8 October 2015). This issue is unique to Minnesota, and has been referred to as a “two-­tiered” approach to Medicaid coverage (Lerner 2011a).10 Larsson explains how complicated this “administrative” discrimination is: It’s so complicated. We use the term “silos.” There’s all these different silos. . . . Anybody can get coverage, but if you are a low-­income immigrant with poor command of English, good luck figuring all this out. . . . I could have sat in your house, as I do, trying to make it as simple as possible, and I can just see their eyes are just glazed over (interview, 7 October 2015).

Both of these examples show that children with more disabling forms of autism and children from working-­class backgrounds were excluded from behavioral services, in part because it was white middle-­class parents, and parents of children without intellectual disabilities, who pushed for those provisions. Privilege was then institutionalized in the resulting autism services. For example, Jama Duale told me:

Uneven Landscapes of Care  /  79 We didn’t get ABA. . . . Nobody has ABA. Maybe the white people [laughter], they know these things. . . . ABA is very helpful, but we didn’t get it. . . . I have MA (medical assistance) and the centers for ABA don’t accept that. . . . They know I’m [an] immigrant from Somalia or somewhere, so the first thing we have is the health card. It’s through the state, and it is always slow accepting [services offered] by the other big companies who will teach the children ABA, or speech therapy (interview, 7 November 2015).

By 2010 the CTSS program was faltering, and private insurance was denying claims for ABA. Families began advocating for an autism-­specific benefit. As Anne Harrington, the state autism planning director at the MDHS from 2012 to 2016, put it: “The constant challenge is trying to fit this multifaceted thing called autism into the pegs of the current system and it will not fit—­the pegs need to be reconfigured . . . and ASD needs to be taken out from under the umbrella of mental health” and given its own set of services (interview, 20 June 2014). Therefore, a new benefit specific to autism was drafted and passed through the state legislature in 2013. The Early Intervention Developmental and Behavioral Intervention (EIDBI) Benefit, hereafter referred to as the Autism Benefit, was meant to address the class and impairment disparities occurring through CTSS. It is important to note, however, that the new benefit medicalizes autism and does not necessarily address the disparities inherent in earlier configurations of service. The Autism Benefit is for children under twenty-­one who have an ASD diagnosis, for whom therapy is deemed “medically necessary,” and who meet the Medicaid guidelines for need. As Harrington explained to me: “To be deemed ‘medically necessary,’ the functionality of the child must seriously interrupt family and community life, so eligibility is linked to severity of core symptoms—­behavioral, communication, and social deficits—­as well as cognitive impairment” (interview, 7 January 2015). There are a series of services offered through the Autism Benefit: a comprehensive multidisciplinary diagnostic evaluation (CMDE), an individualized service plan, an individualized treatment plan, developmental and behavioral therapies, counseling and training for caregivers, progress monitoring, and care coordination.11 The modality, intensity, frequency, and duration of the behavioral therapies (as well as whether they take place in a center or the home) are determined in conversation with parents, and families’ needs and lifestyle are taken into consideration (Harrington interview, 7 January 2015). If a child fails to progress and different levels of intensity have been tried, then the child is no longer eligible for EIDBI (Harrington interview, 2 November 2015). This is because one indication that a therapy is medically necessary

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is improvement. One mother I interviewed told me her son had received behavioral therapy a few hours a week for two years, but was not making the improvement required to maintain coverage, and was cut off from the services (9 November 2015). She did not understand how they could suggest that learning new skills that could make him more autonomous was not necessary; she could see improvement. The Autism Benefit is another example of how the battle to get behavioral therapies covered under Medicaid medicalizes ABA, which was previously considered behavioral rather than medical. Many of the autism therapists I interviewed discussed how difficult it is to fit ABA within the medical model required by insurance companies and Medicaid (interviews with Larsson, 7 October 2015; with Fagin, 11 September 2015; and with Minneapolis-­based BCBA, 13 May 2016). This is partially because children with autism have a diverse array of symptoms, and many of their specific needs, like sensory integration, are not covered under insurance. In addition, anything considered educative (numbers or letters) is not covered under medical insurance. In addition, the assessments and data collection components are not billable, and the training and oversight of less experienced therapists cannot be compensated as both training and therapy, because that would be considered “double billing.” In sum, many features of ABA “best practice” do not fit into the mandates of insurance companies. A core issue that the new benefit was meant to overcome was the binary between mental health and developmental disability services, or the distinction between habilitation and rehabilitation. Harrington explains: “That’s what the benefit is trying to move away from, is not saying it’s habilitative and not saying it’s rehabilitative, but saying it’s a comprehensive intensive benefit for individuals with autism spectrum disorder” (19 October 2015). But interestingly, the autism benefit may nonetheless reify these binaries, because children who do not have comorbid intellectual disabilities or do not meet the “functionality” requirements of the Autism Benefit may still receive services through CTSS (Harrington interview, 19 October 2015).12 In other words, children whose autism is less disabling will still get services under CTSS, whereas children with higher service needs will receive services through the new benefit. Therefore, the binary between habilitation and rehabilitation and between developmental disability and mental health services sneaks back in even as the benefit is designed to erase it. In the case of therapeutic services in Minnesota, then, I have mentioned two mechanisms by which exclusion occurred. First, even though children with low IQs are no longer institutionalized, the determination of their capacity and ability to improve still structures the kinds of services available

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to them; and in the case of autism, it has kept children with more disabling conditions from receiving the proper services. Although the new benefit is meant to address this problem, the divisions between “high” and “low” functioning continue to determine which services families can access. Second, because wealthy white parents pushed for services by suing insurance companies and the state, their privilege was structured into a two-­tier system, which kept working-­class families from receiving ABA. There is one final way exclusion operated in Minnesota. I had two methods for recruiting parents for interviews. I recruited parents who were members of the autism support group, but I also recruited parents through personal care attendants (PCAs) who worked for families who had children with autism. I found tremendous disparities between the two groups. The parents associated with the support group spoke English fluently, tended to be more educated, had more stable employment, and knew a great deal about autism. They were extremely savvy parents who advocated for their children in every possible way, and they used each other to learn about new information, services, and therapies for their children. The parents I interviewed who did not take part in the support group often did not speak English. Some had lower education levels and less secure forms of employment, and were extremely disadvantaged in terms of accessing services. Most were receiving SSI, PCA services, and special education in the schools. I found that none of these parents knew what ABA was, or that it could improve their children’s behaviors and skills. When I asked Anne Harrington why this might be, she suggested that it was due to disciplinary divides between the education and medical systems. As a former educator herself, she suggested that school personnel were reluctant to tell parents about ABA because they worried that the school would be required to pay for it: There was actually . . . kind of a . . . spoken policy that [educators] can’t refer to behavioral treatment because then you might be held accountable to provide it. There’s been this schism. . . . The school districts, a number of them including Minneapolis, have been sued by parents saying, “You need to provide my child 40 hours a week of ABA.” . . . There has been this schism between education versus medical treatment. Some of the providers have told parents, “Pull your kid out of the school system and give them forty hours a week of intensive ABA, because you won’t get that in the school system. You’ll get such a generic thing watered down. It won’t be intensive.” Whether there’s truth to that or not, we haven’t done a good job of coordinating and collaborating. I think those situations have also created further barriers to communicating to families about [their] options (interview, 19 October 2015).

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Harrington suggested that Somali families are referred first to the educational system as opposed to the medical and developmental disability systems (interview, 19 October 2015). And this is not simply an institutional divide, but a philosophical one; whether therapies and supports for autism are educational or medical has been a core tension throughout the history of autism. This divide muddles services in both Minnesota and Ontario. The Autism Benefit has been rolled out in Minnesota, and at the time of writing it is still in place. It was put in place to contend with contradictions and exclusions prominent in the early years of the “epidemic,” and to forge a middle ground that mended ideological and infrastructural divisions—­ between medicine and education, and between developmental disability and mental health. This stopgap remains precarious, and families whose children have higher needs and who face race and class disparities are still trying to bridge over the cracks instead of falling through them. These examples illustrate how the uneven institutionalization of therapeutic services makes them prone to racial and ableist exclusions. The fragmentation of services creates schisms that sustain structural inequalities. Ontario In 1998, four families of children with autism—­including Connor Auton, in whose name the court case was filed—­sued the attorney general of British Columbia, requesting that the province cover ABA, for which the families were paying sixty thousand dollars per year (CBC news 2004). They argued that their children were being discriminated against on the basis of disability (Auton v. British Columbia 2004). In 2000, the BC Supreme Court declared that the treatment was medically necessary, and the province was required to cover the therapy (CBC news 2004). While the BC Court of Appeal upheld this decision in October 2002, the Canadian Supreme Court overturned it in 2004 (Auton v. British Columbia 2004). ABA was represented as “experimental” in the court proceedings (Orsini and Smith 2010). One intervener, an autistic self-­advocate and researcher, claimed that there was not sufficient evidence that ABA therapy was beneficial to children (Orsini and Smith 2010). In Canada, neurodiversity critiques of ABA were given voice through these proceedings, and the medicalization of autism and behavioral therapies was thwarted. However, this has also meant that behavioral therapies are not included in nationalized health coverage. Instead, the federal government has left it completely up to provinces to decide whether and how to fund ABA therapies.13

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In Ontario, the Auton court outcome set the stage for establishing autism services under the Ministry of Children and Youth (MCYS), as opposed to under the Health, Education, or Community Services Ministries. Locating autism services within the MCYS separates therapeutic services from education, health, and disability services, thus cutting it off from existing funding pools and infrastructure. But it has also meant that—­as in Minnesota, though in a different way—­autism remains positioned awkwardly in reference to education, health, mental health, and community supports. Somewhat ironically, the Auton court case spurred provinces’ investment in ABA therapies because many parents and advocates, outraged by the federal ruling, set their sights locally and pushed hard for coverage (Tiedemann 2008). ABA therapies, which were little understood or known before this case, became hotly debated, and parent advocates underscored the vast amount of literature pointing to their clinical efficacy (Tiedemann 2008). Unlike in Minnesota, Ontario invested early in autism-­specific therapeutic services. In 1999, the Ontario government established the Intensive Behaviour Intervention (IBI) Program for children with autism, from two to five years of age. Adrienne Perry, a psychologist at York University, was a consultant who helped design the program and then researched its effectiveness. She described its foundation: Since the . . . mid to late eighties, when some of the research started coming out showing some good success for these intensive behavioral programs, . . .  that type of intervention was not available anywhere in Ontario. . . . At the same time, as was happening everywhere, there seemed to be this explosion in frequency, which you can talk about whether or not it’s a true increase in incidence. . . . Anyway, there’s no doubt that there was an increase in demand and awareness. . . . As the Internet became more available to more people, parents became more educated about the availability of this as a service, primarily in the States; and so people wanted it, parents wanted it (interview, 13 May 2015).

Even though ABA was touted as “experimental” in the Auton case, which was ongoing at this time, parents used evidence of ABA’s effectiveness and demanded access. Perry told me that a “group of really powerful and well-­ educated parents” are the ones who always push policy in the province (fieldnotes, 5 November 2014; clinical director interview, 7 May 2015). As in the United States, parents and experts used cost-­benefit analyses to convince the government to invest in early intervention:

84 / Chapter Two Then there’s the cost-­effective piece. . . . If you treat the young kids while they’re young, you will move a certain proportion of those children off this high-­needs path that they’re on in terms of services. There are huge cost savings over that child’s life span that actually will compensate—­more than compensate—­for the cost you’re spending. In the long run, if you want to be nothing but fiscal, it makes good sense (IBI clinical director interview, 7 May 2015).

The Ontario government employed this logic in determining its programming. Consider this report, titled “Pay Now or Pay Later: Autism Families in Crisis,” drafted by the Standing Senate Committee on Social Affairs, Science, and Technology in Ontario: Families with autistic children and autistic individuals themselves insist that governments must pay now for autism therapy, services and supports in order to obtain the greatest return on investment. Otherwise, they will pay later in terms of much higher costs in future years for welfare, social services and institutional care (Standing Senate Committee 2007).

Pressure from parents, expert advice to government on the efficacy of ABA, and the looming shadow of an emerging epidemic convinced the Ontario government to make a substantial investment in what would become the “only intensive behavioral program of this magnitude in the country. Some folks would say in the world” (IBI clinical director interview, 7 May 2015; Perry et al. 2008: 624–­25). IBI, or “intensive behavioral intervention,” is a “made-­up word,” according to a former clinical director involved in implementing the program (interview, 5 November 2014). The use of “aversives” in ABA garnered a great deal of negative media attention. Therefore, IBI was chosen as a moniker to avoid the negative connotations of ABA. But when the MCYS later launched an ABA program for children with less disabling symptoms, this confused matters because it implied that IBI was not a form of ABA when in fact it is (Perry interview, 13 May 2015). I return to the ABA program below. IBI services are meant to be “intensive” (twenty to forty hours per week of one-­on-­one interventions), situated in centers, with children continuously monitored to track their success (Perry 2002). Initially, children were only eligible until the age of five. There’s a huge body of literature that suggests that for a . . . subgroup of kids on the autism spectrum, we have the potential to make remarkable progress.

Uneven Landscapes of Care  /  85 By remarkable progress, we mean catching children up to their peers. We know from the research literature that if we are able to start intervention before age four, and if kids have . . . readiness to learn well from this intervention, effectively they can catch up. Literature suggests about 40 to 50 percent of those ideal candidates have the potential to catch up. . . . Fifty to 60 percent won’t. It doesn’t mean we can’t teach them. We can teach many kids many things, but we won’t see that change in their rate of learning. That’s really what the goal of the intervention is, is to try to change the kids’ rate of learning (clinical director interview, 7 May 2015).

Interestingly, practitioners and government officials in Canada were convinced much earlier than their counterparts in the United States that behavioral therapies were evidence-­based; and because insurance companies and nationalized health care were not funding ABA, its acceptance as orthodoxy did not require its medicalization. If ABA had been medicalized, however, it would have been universally available through national health care. Eschewing medicalization contributed to the maintenance of race, class, and impairment disparities in access. As soon as the IBI program was implemented, it was embroiled in controversy. In 1999, two families, the Deskins and the Wynbergs (along with twenty-­eight other families), sued the Ministries of Health, Education, and Social Services in Ontario (Wynberg v. Ontario 2006). The families claimed that in instituting a five-­year age cutoff, the government was discriminating on the basis of age and ability. When the Auton Supreme Court case was decided in 2004, the Ontario cases reframed their strategies and focused on IBI as an educational right. The Wynberg and Deskin cases succeeded at trial court in 2005, but then lost at the Ontario Court of Appeal. The ruling claimed that there was still not sufficient evidence that ABA was an effective educational approach, and that the families should not be compensated when other families were not. The families were denied leave to appeal to the Supreme Court of Canada (Wynberg v. Ontario 2006; Mac­ Charles and Black 2007). Despite the loss, Ontario lifted the age cutff in 2006 and allowed children of all ages to access IBI (MacCharles and Black 2007). Between these two court cases (Auton and Wynberg-­Deskin), ABA was declared neither a medical intervention nor an educative one. The Wynberg-­Deskin court case was clearly about the imposition of the “window of opportunity” logic, which suggests that governments should invest in only the youngest of children. In lifting the age cutoff the government bowed to parental pressure; but as I will explain below, the program could not sustain the shift in policy. The waiting lists grew to such an

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extent that the services were no longer reaching the children for which they were designed. And in fact, children of parents who advocated the most and loudest were the ones who received services, once again instantiating privilege into the care landscape. The IBI program was designed to serve children with a particular level of impairment who had the capacity to “catch up” to their peers. Those who designed the program reified distinctions based on impairment by suggesting that IBI should be given to children who experienced more “severe” forms of autism, but whose IQ was above thirty-­five. According to the experts, it was meant for children who experienced more disabling symptoms, but whose IQ nonetheless indicated that they had the capacity to improve. In its determinations, then, the program excluded children who were deemed beyond improvement, just as systems of institutionalization had done in the past. Here is how a clinical director who determines children’s eligibility described the process: We didn’t have a coherent sense of what it means to be on the severe end of the spectrum in 2000. We use the DSM-­IV criteria. We use also the Childhood Autism Rating [CAR] Scale, which has fifteen characteristics—­one is low and four is high—­and a child is ranked anywhere on that scale for all fifteen characteristics. If the child’s overall score is above 37.5 (or is somewhere in the mid-­thirties), then that means severe. But we also have to use our clinical judgment. A CAR score gets higher as the child gets older, because the child is compared to children of a similar age. It is not a perfect science, and there is a lot of judgment that goes into the decisions (interview, 5 November 2014).

This same assessor suggested that not every child would perform well under IBI. Some children “may be too old, may have medical conditions that get in the way, or may be too low-­functioning; all of these can keep kids from being appropriate for IBI. Also, though, kids have to make gains with the services. Often kids are deemed eligible at two to three years, which is the ideal time to give them the service, but then they are waiting [to get services due to extensive waiting lists] until they are four to five years old, which is not going to be as effective” (interview, 5 November 2014). Perry said in no uncertain terms that the program was not reaching the children for which it was designed, and that there should have been cutoffs with regard to age, “severity of autism,” and cognitive impairment (interview, 13 May 2015). According to Perry, the government bowed to political and parental pressure, but it cost the government the effectiveness it could have achieved in results. She explains, “It’s been a victim of its own success

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in some ways, because people have wanted it to do everything, and it’s only meant to do this one specific thing for this one specific group, and it hasn’t been allowed to do that” (interview, 13 May 2015). Perry and colleagues conducted studies on the effectiveness of the IBI program. While most research on ABA has been conducted in clinical trials, the IBI program offered an opportunity to study whether a broad-­based community intervention was effective in real-­world settings. They found that initial age at the start of the therapy and IQ were the most crucial factors in its efficacy (Flanagan et al. 2012; Perry et al. 2011). The children who performed the best had the most extensive number of hours, were the youngest, and had higher developmental scoring at the outset (Perry et al. 2011). In one study, only 11 percent of the children “achieved average functioning” (Perry et al. 2008). Once the age limit for IBI was lifted, funding was increased, but the program began to flounder. An auditor general report found that children were waiting four years before getting services (Auditor General 2013). The number of spots remained constant, but the waiting list grew. Part of the problem was that service providers were also getting pressure from parents who had children in the program to keep them in services despite their lack of improvement (fieldnotes, 30 October 2014; interview, 5 November 2014). Parents, then, pushed back against both the “window of opportunity” logic and the determination by experts that only certain children were worthy of services. These were important battles that ultimately forced the government to reconsider its provisions. There were other issues with the program. Parents had two options to choose from: they could get services directly at a public center, or they could manage their own budget and pay for services at a private center through indirect funding. The auditor general found that parents who managed their own budget were getting longer services and were reimbursed for more money than those who got services directly in-­center. These families were from higher-­class backgrounds, and had more cultural capital to navigate the system. These two dynamics illustrate how the IBI program was quietly reinforcing class and race privilege by rewarding those who advocated the loudest and took on the burden of self-­management. Because the IBI program was supposed to assist children with higher service needs, in 2011, the MCYS implemented a program confusingly referred to as “ABA”—­targeting children on the “higher” end of the spectrum for a lower intensity program focused on skill development. Ontario’s ABA services are for two to four hours per week, are delivered for two to six months in group settings, and are oriented toward teaching children a particular

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goal. Once that goal is achieved, they return to the waiting list. The terminology of the program was unfortunate because it implied that IBI was not a form of ABA, and because it suggested that children with different impairments required different services. In Ontario, professionals suggested that where a child fell on the autism spectrum should determine the kind of behavioral intervention they received (in this case, ABA versus IBI). Yet no such distinctions were made in the United States. US providers did indicate that children who were very cognitively impaired may not make tremendous progress with ABA or may only learn life skills, but that all children could benefit from ABA with different intensities, modalities, or durations. The unexpected consequence of managing a very large public provision program in Ontario is that professionals made determinations about eligibility that reified the distinction between those on the “higher” or “lower” ends of the spectrum, and thus subtly reinscribed the divide between those with developmental disabilities and those without. The Ontario and Toronto governments provided a variety of services and programs to children with autism,14 but IBI received the most political attention. Parents saw IBI as their only real option, the “golden ticket” (fieldnotes, 30 October 2014). This is in part because IBI was advertised as a program that could teach children the skills they would need to “catch up to their peers.” This promise of “normalization” and integration was why parents fought so hard to remove the age cutoff and increase funds invested in the IBI program, as well as to contest decisions about their individual children being either declared ineligible or discharged from the program. The Somali parents I interviewed were enraged by what they believed was a fundamental racial bias in the IBI program. As Adar explained, “The Canadian government is funding millions and millions . . . of dollars into the program they call [IBI] . . . and we Somalis, we cannot get access to it. . . . You wait and wait and wait and wait” (interview, 15 May 2015). Parents insisted that Somali children were not being admitted into the IBI program or were being dismissed for lack of progress. Adar’s children were actually admitted into the program twice. Her sons were in an early cohort when IBI was first being implemented, and were dismissed when they reached age five. Adar insists that they gained more skills in that program than they have ever since. When the age cutoff for the program was lifted, Adar used her pull as a leader of the support group to get her sons back into the program, but they were dismissed for lack of improvement. She insisted that this was happening to many Somali families.

Uneven Landscapes of Care  /  89 adar: You know, you wait and wait and wait. And they take your child. . . . Remember, you waited [a] long time, and [when] they take you in, [your child is there] just a couple months, [and] they ask you [to leave]. They wanna take you out. So I’m asking myself: “Who’s benefiting [from] this institution that they built? Who’s benefiting?” Certainly not the Somali children. Because the children, they keep coming in and out. . . . Our kids, they are not benefitting from it. We are getting in and we’re coming out. We’re getting in, we’re coming out. . . . claire: Why? Adar: They find [any] excuse. Whether they say, your child is too severe, they can’t teach him anymore, or he’s too high-­functioning. They can’t teach him. Or, I love this one . . . they say, “We teach him everything we could.” Can you believe it? We teach everything we could, and there’s nothing else we can teach (FGD, Toronto, 5 June 2014).

Because parents believe the IBI program is the only real possibility for improving their children’s life chances, they are gutted and terrified when they are not given access. They explain that they cannot afford to pay for these extremely important therapies out of pocket, so they believe this is their children’s one shot. Part of the issue, as explained by Perry and her colleagues, is that this program, even at its best, and even if it were implemented without faults, could never have ensured that all children receiving services would make significant gains. It was designed for a very particular subgroup of children, and even among those children, it was estimated to improve the learning skills of only 40 to 50 percent. Yet it was advertised as a program that could catch children up to their peers, to save the system money in the long run. Parents believed these promises; so when their children were denied access, or when they were told their children were not succeeding, they felt abandoned and hopeless. The ABA and IBI programs are no longer in place in Toronto. After I finished fieldwork, they redesigned their autism program and implemented a new benefit that resembles the one in Minnesota. The institutionalization of the IBI and ABA programs in Ontario is nonetheless illustrative of how racial, class, and ableist privileges were structured into Canada’s landscapes of care. They demonstrate how fragmentation of services and crisis-­driven policy systematize and reify structural inequality. Somali Parents Navigating Therapeutic Services In both Minneapolis and Toronto, Somali parents discussed how racial exclusion affected their ability to access therapeutic services for their children.

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Some Somali parents told me they lacked the cultural capital of their white peers. Deeka explained, “They have white privilege. . . . It’s [a] knowledge issue. . . . A white mother is able to navigate the system. Not just based on her skin color, but based on her ability to speak the language. Based on the ability to know where to get the resources . . . to advocate. . . . Parents don’t know their rights” (Deeqaifrah Hussein interview, 4 October 2015). Deeka told me she had seen white mothers fight for the best IEPs (individualized education programs) for their children, but that Somali parents did not realize they had this right to fight for their children. “That knowledge is power itself. Just knowing. White parents, especially the white female parents, know that right. They have that privilege.” Another mother explained: A white mother . . . is familiar with it [autism]. A Somali mother is not familiar with this. Not only that, she is new to the country. Some of them don’t know how to navigate the system. Some don’t know how to write English. Some don’t know how to read English on the Internet to go and look for it. The white mother [knows] how to navigate the system. The other mother doesn’t know. If she knows even, the Somali mother, to navigate the system, there is a barrier (interview, 7 October 2015).

In these quotations, Somali parents recognize that their white counterparts possess cultural capital that Somalis do not because they are new to the country, lack the proper tools to understand and manage a complicated landscape of care, and do not recognize that other parents get resources because they fight for them. Somali parents face a series of barriers to accessing care, but knowledge of the system and the confidence to take it on were often noted as cultural components that middle-­class parents simply took for granted and Somali parents had to learn over time. In fact, the support groups were important locations for gaining this cultural competency. Parents shared knowledge and encouraged one another to navigate the available systems and fight for resources. Parents outside the support groups had comparatively little understanding of how the system worked or what their rights were within it. In this way, the support groups helped Somalis gain important skills and knowledge to better help their children. In addition, Adar told me that because white middle-­class parents do the strongest advocating to their government officials, poor or immigrant households are ignored. [I]f  you have the money, if  you can afford actually to pay [for] everything like the diet, you can hire someone who works [with] the child. . . . At home, you have

Uneven Landscapes of Care  /  91 someone who’s cooking, cleaning, that sort of thing. . . . [Then] mom is not actually overwhelmed, you can cope with that. . . . You have a child with autism, but you don’t feel the stress, the financial stress, the other stresses that are coming on. . . . And those are the people who are advocating for autism. . . . Wherever I go, I meet them. And they will shut me up, because . . . they are connected with politicians. They have connections with big companies (FGD, 4 June 2015).

Here Adar suggests that advocacy is shaped by the privileged and ignores the needs of the marginalized. In other words, policies are skewed toward those who experience autism differently because they can afford to pay for private therapies and supports for themselves, thereby accentuating their privilege. In addition, working-­class immigrant families face a host of obstacles that have ontological effects on how their children experience autism. The literature shows that children of color have more co-­occurrences of intellectual disabilities and higher service needs, which stem in part from disparities in the diagnosis and reporting of autism, as well as a whole host of barriers associated with accessing services, getting proper support, and facing discrimination (Liptak et al. 2008; Mandell et al. 2009; Travers et al. 2011; Horovitz et al. 2011; Chaidez et al. 2012; Becerra et al. 2014; Baio 2014). Dislocation and marginalization can yield lifelong disadvantages for poor immigrant families: Abdi is twelve years old. . . . [My son didn’t] get early intervention because I haven’t had enough information to get the resources, and I haven’t got people who can help me in the city or anywhere. I regret I couldn’t have that chance, because I knew many parents who had the resources and the information on time. Their children are recovering from the autism, and they become right now independent for themselves (Abdirisak Jama interview, 1 November 2015).

Some parents also mentioned that recovery from autism is a privilege reserved for the wealthy. claire: “Do you think it is possible to recover a child from autism?” mother: “I think so. If you have money and do a lot of therapy, yes. I think there is people who did that and saw the difference in their kid from [where] he was—­but do you have a hundred, two hundred thousand dollars to spend on this kid? . . . It’s a privilege” (interview, 7 October 2015).

Due to the widespread moralization of parenthood, parents of children who are not accessing early intervention services are often subtly blamed for

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being “in denial,” or for not doing everything in their power to help their children. These moral expectations are also extremely racialized and classed, which means that parents from lower economic classes and parents of color face disciplinary surveillance of their parenting practices. In addition to the ontological effects of marginalization from services, support, and advocacy, children of color are diagnosed with emotional behavior disorders and are deemed to have lower IQs than their white counterparts (Van Naarden Braun et al. 2010). These diagnostic disparities and the racialization of behavior matter greatly in the provision of educational services, which leads to harsher, less integrated, and more violent treatment of children of color with autism.

Educational Services In both countries, when Somalis were unable to access therapeutic services, or were unaware of the therapeutic services to which they were entitled, their children still accessed special education services in schools. As such, Somalis often get caught in the historic institutional and philosophical divide between therapeutic and educative approaches to autism. In both Toronto and the Twin Cities, Somali youth experience tremendous inequality within the school systems. Racial and income inequalities lead to poorer performances, higher rates of suspension and expulsion, and high dropout rates among Somalis (Poisson 2012; Hawkins 2014). In addition, Blacks in both locations are overrepresented in segregated special education settings where they are highly surveilled and often punished (Poisson 2012; Biddle 2014). Consequently, Somali youth with and without autism are particularly vulnerable to unequal educational outcomes. Minnesota Under the IDEA, children with disabilities must be placed in an educational setting in the “least restrictive environment” possible, on the basis of their IEP. In the least restrictive setting 1, children are put into classrooms with their peers and given in-­class supports, and in the most restrictive setting 4, they are placed in a separate school (Lipkin and Okamoto 2015: e1654).15 Minnesota is a birth-­mandate state, which means that special education is available from birth to twenty-­one years of age, and Somali families are more likely to access special education than therapeutic services in Minneapolis. Children with special needs are given an IEP, which is evaluated on at least an annual basis, and an autism specialist is available for

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those meetings. Teachers in autism classrooms may not have ABA-­specific training, but they may use ABA components. Parents can also bill medical assistance for speech/language and occupational therapy provided in public school (Cox and Johnson interview, 8 September 2015). Although they are reassessed annually, I was told by Minneapolis school administrators that children with significant disabilities like “lower-­functioning autism,” kids with multiple disabilities, or children with “profound cognitive disabilities” are likely to remain in setting 3 (a separate disability classroom) throughout their education (interview, 22 September 2015). Parents often complain that the schools provide very little educational training for their children who have more disabling forms of autism (interview, 4 October 2015). The Minneapolis and St. Paul school districts have faced national criticism for the racial injustices experienced by youth of color in their schools. Children of color, and Black children in particular, are overrepresented in nonintegrated, most restrictive settings, and their behaviors are often criminalized (Star Tribune 2015). In Minneapolis, 18.3 percent of Black and 11.1 percent of Native children are in special education programs, and 6.6 percent of children in special education programs are referred to the juvenile system or arrested (Biddle 2014). In St. Paul, African-­American male secondary students with a disability are at a 66 percent risk of suspension (Hawkins 2014). Harrison Education Center in Minneapolis has received a great deal of negative attention because it is the most restrictive setting for children with disabilities. It is a stand-­alone school mostly for children with emotional behavioral disorder (EBD) diagnoses, where 90 percent of those in atten­ dance are Black (Meitrodt 2013a). Within the school system as a whole, 23 percent of white students with autism are scoring at their grade level of standardized tests, whereas only 4 to 8 percent of Black students with an EBD label score at their grade level, even though children diagnosed with EBD have equal or higher IQs than children with autism (Meitrodt 2013a). There is no federal regulatory body that castigates schools for overly disciplining and segregating disabled students (Meitrodt 2013b). Racially marginalized students in Minnesota have the highest rates of discipline in public schools in the country (Meitrodt 2013b). They call Harrison the prison pipeline . . . where kids go from juvenile detention straight to prison. I actually knew six . . . Somali kids who were there. Four of them went straight to prison after graduating. . . . If a kid is actin’ up, and they happen to be white, the first thing you suspect is they have autism. . . . If

94 / Chapter Two the same behavior is bein’ done by a Black kid, you assume they’re EBD. For some reason, there is a shame or stigma or something with the label EBD. That parents, once you get that, is really hard to get that label off your child (Deeka Hussein interview, 4 October 2015).

Harrison also has a classroom for children with autism, reserved for those who are deemed too aggressive for general education (fieldnotes, 22 September 2015; interview, 8 September 2015). Several people I interviewed who work in the Minneapolis Public School system told me that Somali children with autism often had accompanying intellectual disabilities or more than one disability, and were thus multiply impaired. These students are more likely to be in settings 3 and 4, which are more restricted and segregated special educational settings (fieldnotes, 22 September 2015). In fact, in an interview with Minneapolis School District employees, they recognized the “big disproportionality issues with race”: “Seventy-­one percent of our white students identified with autism received the majority of their education in a general education setting [setting 1]. Where 25 percent of our African American students were receiving their instruction the majority of the time in a general education setting, with autism” (Cox and Johnson interview, 8 September 2015). They do not distinguish between Somali-­and African-­Americans in their collection of data. But it was clear that racially marginalized students are more likely to be in restrictive educational settings, even when they have the same diagnosis as white students. When asked why this is happening, the administrative staff quite simply admitted the problem was “institutionalized racism” and that “our systems are set up to be racially biased” (interview, 8 September 2015). There have been a number of initiatives by the Minneapolis School District to liaise with the Somali community (Cox and Johnson interviews, 9 January 2015 and 3 October 2014). Yet many Somalis I interviewed spoke of a general sense of alienation that Somali children experience in school due to their religion, race and, parents’ immigration status: Then all of a sudden, [the parents] find that [the youth] don’t want to go to the school. They [are] totally alienated. Can you go to a place where you feel that you are worthless? That you are not gonna amount to anything? . . . Then when they don’t want to go there, want to drop out? No help. No support system to handle that mental—­it’s a mental issue. . . . They don’t have a safety net for [children in those conditions] or any programs . . . that will address those youth in a culturally appropriate manner. . . . That child is lost (Mariam Egal interview, 7 January 2015).

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Because teachers and staff in the Twin Cities perceive Somali youth with and without autism, particularly boys, as exceptionally violent or prone to aggressive behavior, they are suspended and excluded from general education. There is a direct causal link between experiencing inequality within the school system and being criminalized by the state. The school-­to-­prison pipeline, which has resulted in the overcriminalization and imprisonment of American Black youth, also ensnares Somali youth, who are targeted by state violence because of their race, but also because of their religion and immigrant status.16 Although there have been dramatic improvements in the provision of special education to children with autism since the rise of the “epidemic,” students of color and those with cognitive disabilities face disparities. They are more likely to be either ignored or disciplined, revealing the ways in which autism provisions instantiate rather than redress entrenched racial and ableist structural inequalities. Ontario Bill 82, an amendment of the Education Act in Ontario, was passed in 1980 and fully implemented in 1985. It provided universal access to all children with disabilities in the public school system. Children go through an Identification, Placement, and Review Committee or IPRC process to be placed in a special education classroom, and the settings are similar to those in the United States. Many children may have multiple diagnoses, so a child may have a primary exceptionality of developmental disability (DD) but also an autism exceptionality; those children would be counted under DD and not ASD (fieldnotes, 5 June 2015). This is important to note because it illustrates how a child’s intellectual disability trumps their autism diagnosis, once again reifying the divide between people with higher service needs and more cognitive impairment, and those with less disabling forms of autism. One ministry source suggested that autism was the “disability of choice” because there are more services and less stigma, and that an “ASD diagnosis gives parents hope” (fieldnotes, 16 June 2015). Nonetheless, this same source explained to me later in our conversation that there was very little educators could do for children with autism who have accompanying intellectual disabilities, especially those positioned in “DD classrooms” with extensive cognitive impairments. He said that these children could only be provided with “community supports” and very few “educational services.” All of the ministry officials with whom I spoke mentioned that they were under tremendous pressure from parents and disability rights groups to

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keep children as integrated as possible, but that this was sometimes very difficult because “there are more kids with higher needs than ever before” (fieldnotes, 5 and 16 June 2015). Due to the Wynberg-­Deskin ruling, ABA is not considered an educational mandate. As a result, “school boards do not deliver therapy” (fieldnotes, 5 June 2015). However, “ABA instructional methods” can be provided. In all of my meetings with Ministry of Education officials and Toronto School Board officials, there was a very clear demarcation they made between therapy and education: schools cannot provide therapeutic support, and ABA is considered a psychological therapeutic intervention, which is outside their scope and expert capabilities (fieldnotes, 5, 6 and 16 June 2015). And yet the Auton ruling also indicates that ABA is not “medically necessary,” and is therefore outside the purview of universal health care. The health and education systems in Ontario may serve children with autism in certain ways, but they claim no jurisdiction over behavioral therapies, leaving families to find behavioral services either privately or through the public sector programs I have described, leading to disparities in access. Due to Canada’s adoption of multiculturalism as its official stance on racial inclusion, there is often a paucity of data available on racial differences and outcomes. I have no data on whether children from marginalized racial backgrounds are more likely to be referred for special education and placed in the most restrictive environments, as they are in the United States. However, I do have data pointing specifically to the mistreatment of Somali students in the Toronto public education system. Due to a series of complaints from Somali families in Toronto, the Toronto District School Board (TDSB) established a task force on the “success of students of Somali descent” in 2012. In general, Somali children are exceedingly overrepresented in special education settings (especially in exceptionalities of intellectual disability and learning disability), are very likely to be suspended during their school careers, and receive low standard achievement results (Task Force 2014). Somalis also have high dropout rates and lower postsecondary education placements (Task Force 2014). The Somalis I interviewed told me that education was the “biggest challenge” they faced, and their experiences reflected the findings of the task force. They told me that teachers expected Somali children to behave aggressively, and then dolled out harsh punishments in response. Adar explained: “If the child who’s going to school in a DD classroom misbehaves, they call the parent and ask them to keep the child at home. Maybe the child can stay in the classroom if the parent stays with them. . . . If the children are having aggressive behavior . . . That’s what they ask you to do” (FGD, Toronto,

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5 June 2014). Every day a child is not in school, she is not learning new skills. Many parents could not keep jobs because of the frequency of being called in to pick up their children. Consider this conversation from a small focus group with parents in Toronto (15 June 2015): woman 1: I can’t work because . . . I’m with my daughter . . . and the school calls sometimes every day. . . . Now it’s a little better, but when she was younger they would call three, four times a week. . . . I [would] have to pick her up . . . because she’s been horrible in the school. . . . Or sometimes, we (I or my husband) [would] sit with her in the classroom . . . because she was violent. . . . woman 2: The educators. They don’t [do] their best with our kids. . . . [The children] don’t learn a lot . . . because [the teachers] don’t believe these kids can do better. . . . woman 1: One day my daughter was violent, and when . . . the principal called, . . . I [drove] down there [and] I see some people holding my daughter in lockdown . . . down on the floor. . . . I say, . . . “It is clear. Move, and leave her alone.” . . . Yeah, I said, “Look at me. Only me, I come, and I have to pick up my daughter, bring around the car, and drive home [with her], and I’m not scared. How come you scared when there are [three adults and one child]? Why?” . . . I said, “You’re not supposed to . . . teach autistic children when you [are] scared [of] the child.” . . . . . . One day . . . when I had her go to school and my husband [was] home, the principal called and said, “Your daughter, she is screaming.” [So my husband went to the school.] You know what [the principal] did? He called [the] police. . . . When my husband [arrived], there are four men, the teacher and the principal, and my husband said, “[Why] do you need [the] police?”

Schools are also encouraging parents to put children with autism on psychotropic drugs to help control their behaviors. The school [where] I work, they give a child [with autism] antipsychotic medication. They control him with antipsychotic medication. But . . . the drugs make it so worse. . . . He doesn’t focus, he doesn’t do anything, he’s like that [stares without blinking]. And I’m so mad. Every day I saw that kid, I get mad. And that’s what they do on the school board. . . . “You want your son focused?” “Yes, I want my son focused.” Okay, then give him medication! (Idman Roble interview, 4 November 2014)

Although the few existing studies on race and psychotropic drug use for children with autism do not find race a significant factor,17 I have no doubt

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that aggressive behavior in Black boys is read quite differently than it would be in white children. Racial bias in interpreting behavior leads educators to place Black children in more segregated settings, and to suspend them and police their behavior. It is possible that recommending and prescribing antipsychotic medications for aggressive behavior is also racialized. In this section I have shown that Black children in both Minneapolis and Toronto are more likely to be deemed intellectually disabled, and more likely to be put in segregated school settings. In addition, Black children’s behaviors are interpreted as more violent and aggressive, and children are expelled, suspended, and punished for those behaviors at higher rates. In addition, because children of color are less likely to receive therapeutic services, they are often only accessing services for their disabilities through the school systems, thus making these punitive and racist systems more powerful. Segregating out and in essence institutionalizing Black children with autism by labeling their behavior violent, overdiagnosing them with cognitive impairment, and insisting they be put on psychotropic drugs has ontological effects. It racializes autism. When Black and white children with autism are defined and treated differently, race is materialized as behavioral and cognitive outcomes.

Disability Services People with disabilities in both Canada and the United States are eligible for federal entitlements to support their accommodations. Most of the parents I interviewed in both countries were accessing these benefits. The disability benefits in Minnesota are important to describe, because they once again reify binaries in cognitive capacity and exclude people based on economic standing and race. They provide a final example of the inequalities that Somali children with autism face. Minnesota uses Medicaid Home and Community-­Based Services (HCBS) to provide developmental disability (DD) waivers and community alternative for disabled individuals (CADI) waivers to families with children with special needs, including autism. Though these waivers are not used for ABA services, they are used to pay for a host of supports crucial to families caring for children with autism.18 When evaluated for a waiver, a person is given an IQ test as well as an adaptive functioning evaluation, and then a “level of care” committee determines whether the individual’s needs are at the level of an intermediate care facility (ICF). This means that the state would have paid for this individual to be institutionalized, so the family is given the equivalent in state funds. To receive an ICF level of care, the individual

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would have an IQ of 70 or lower, would score two standard deviations below the mean in four areas of adaptive functioning (communication, daily living skills, socialization, and motor skills), and would require habilitative services. The DD waiver provides more financial support than the CADI waiver. The CADI waiver is based on a level-­of-­care assessment of nursing facility (NF), and is often given to people with mental illnesses who require rehabilitative services (Hennepin County DD Case Management staff interview, 17 November 15). Whereas Eyal argues that autism sutured over historic distinctions between “socially capable and incapable” children (2013a), these waivers split populations on the basis of IQ, adaptive functioning, and the distinction between habilitative and rehabilitative needs. Because IQ and cognitive capacity are racialized, disability provisions play an important role in maintaining racially stratified outcomes. People with autism who straddle these divisions—­who need services and supports that are both habilitative and rehabilitative—­often fall between the cracks. The Minnesota legislature decides how many waiver “slots” are available to people in Minnesota, and the waiting lists are very long. Waiver spots are not determined by how long one has waited, but on the “health and safety level of care”—­meaning that they are determined by the level of crisis one’s need poses to those in their family or community (Hennepin County Human Services and Public Health Department communication, 6 October 2015). They are meant to prevent out-­of-­home placement (interview, 17 November 2015). Both DD and CADI waivers are lifelong supports. All waiver services are only available to people on Medicaid, so wealthy families pay additional fees and take a disability exemption to access these Medicaid provisions. The waivers are the only way to receive adult services, so as children get closer to the age of twenty-­one, their parents feel additional pressure to receive waiver services. In 2015, Kyle Guggenberger, Jay Hannon, Brianna Hoover, Abigail Pearson, and Amber Brick filed a class-­action case against the state of Minnesota, alleging that the state had mismanaged HCBS for two decades, allowing one billion dollars to go unspent while five thousand people with disabilities were placed on waiting lists for years without being told that money was available to them (Serres 2015; Guggenberger v. Minnesota 2015). Counties administering waiver services are allowed to reserve portions of funding for unexpected crises; and if unspent, the money returns to the state’s general funds. This court case exposed the fact that counties were increasingly reserving more and more funds into this emergency cache each year while thousands of people remained on waiting lists (Serres 2015).

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Some Somali families I interviewed were convinced that there was racial bias in the distribution of DD waivers, and that many Somalis had been denied these really important funds. Anne Harrington, the state autism planning director at the MDHS from 2012 to 2016, explained that most of the waivers were made available soon after deinstitutionalization and before Somalis settled in Minnesota. She suggested that the bulk of the money for DD waivers was spent when the funds were first made available in the state, especially as more and more funds were being reserved in the emergency cache. As such, more white families benefited from these coveted funds than did families of color. [Somalis] see that some people have a DD waiver and others don’t. . . . To someone from the Somali community, . . . they’re seeing unfairness all around. Again, it breaks down the trust. . . . They think that a DD waiver is something that is almost an entitlement, because they see other people with disabilities, and especially because this happened twenty years ago that people started getting the DD waiver, many people who have the DD waiver today are . . . Caucasian American citizens. Not completely, but it was before the influx of the Somali community and the autism issue within their community was evident (Harrington interview, 7 January 2015).

Somalis perceive racial injustice in the distribution of disability services. These funds are extensive, and are the only real funding available for adult services. Without them, poorer families may not survive the financial burden of lifetime care for family members with developmental disabilities. When I was conducting research, direct service provision was being slowly replaced by “consumer-­directed” planning, in which parents take on bureaucratic and management duties to spend allotted funds. It was being celebrated as more flexible and cost-­effective (fieldnotes, 15 September 2015). But one of the unintended consequences of such a shift is that it devolves responsibility for management onto parents, caregivers, or individuals. In the guise of more disability-­friendly and community-­oriented services, which are geared directly toward individual need, sneaks an outsourcing that saves the state funding dollars but also the onus of management and oversight. Self-­managing of services, training of staff, and budgeting can be difficult for people with language, cultural capital, cognitive, and education barriers. The most common service Somali families access is that of a personal care attendant (PCA). As explained in chapter 1, PCA services have become a primary site for entrepreneurialism within the Somali community. However, a number of issues are associated with the PCA program. First, while it

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does provide a source of employment for relatively low-­skilled immigrants, the training required to become a PCA is minimal, and the PCAs I met knew little about autism. Several PCAs were concerned that my research involvement would negatively impact their PCA businesses, because they falsely believed that as parents became aware of behavioral therapies, they would no longer require or be eligible for PCA support. As such, through a manipulation of the tight-­knit nature of the Somali community and the fact that many Somali parents face language and cultural barriers, some PCA businesses sought to keep Somali parents in the dark about other services available to them. This is another subtle way in which race and culture operate to keep Somalis from accessing services. For all of these services, a public health assessor or team comes to the home to determine the family’s eligibility for services and the level of care needed. This often requires parents to present the child’s “worst day possible.” Many parents do not want to share their challenges with strangers. Anne Harrington, who also has a child with disabilities, explained: Often . . . our Somali families don’t necessarily . . . understand why they’re being asked these questions. I know because I’ve had to go through that same assessment for my own son. You don’t even recognize, when you’ve been living this way for as long as you have, how all the adaptations that you’re making to your life to make it successful for your child. It’s almost like when somebody comes in and does this assessment, you have to describe all those things and . . . how bad it is, which is horrendous for a parent. . . . I’m a savvy, knowledgeable parent, but I learned you’ve got to describe how all the things that you do to adapt to accommodate—­you have to paint the worst case scenario to just get the basic supports that you need. Many of the Somali community don’t understand that (interview, 7 January 2015).

Parents, therefore, have to perform disability for the state, and these performances must be legible within certain registers for families to receive the services they need. Not only is this challenging for families (because it can be shameful to present one’s life in the worst light possible), but it also requires cultural capital and language ability that Somali families may not possess. One woman I interviewed said that her son refused to perform in a way that illustrated their need, so the assessor told her, “Your son is not that severe” (12 November 2015). As a result, she was denied the CADI waiver she required to better support him and her family. The translation of their everyday lives with their children into a legible category for the state can be experienced as a form of violent misrecognition (Giordano 2014).

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Conclusion The increasing prevalence of autism and parental demand for services pushed governments in both Minnesota and Ontario to develop crisis-­ driven autism policies that were spotty and fragmented. Parents used an economic logic to encourage governments to invest in early intervention to stem the tide of what was portrayed as an epidemic of people with complex needs, who would overwhelm an already taxed and underresourced system of disability services for adults. Over time, autism-­specific institutions and policies were introduced in both Canada and the United States. In Canada, the early-­intervention services reified the binary division between mental health and developmental disability, suggesting that where people are placed on the autism spectrum should determine the therapy they access. In the United States, subtle class and impairment disparities shaped the early years of autism services, excluding poorer autistic children with higher service needs from receiving ABA. In both locations, then, despite the spectrumification of autism, historic institutional silos and the binary logics of habilitation and rehabilitation continue to haunt autism care. Children who are most vulnerable because of their race, class, and ability are most likely to fall through the cracks. Despite the eventual decision to institutionalize autism-­specific programming in both locations, different systems in Canada and the United States were yielded jurisdiction over behavioral therapies. In Minnesota, ABA was medicalized—­forced into the structures of insurance mandates and Medicaid. In Ontario, ABA fell under the children and youth portfolio. Because ABA was not medicalized in Canada, families were not given universal access through national health care, and that has contributed to ongoing race and class disparities. Given the fragmented and underresourced nature of American health care, and the recent retrenchment of Medicaid under President Donald Trump, the medicalization of behavioral therapies in the United States has also led to precarious and uneven access for working-­class families of color. Therefore, the medicalization of behavioral therapies in the United States and the lack of their medicalization in Canada have contributed to the maintenance of racial and class disparities. It is important to challenge the logic operating in “windows of opportunity” discourses which prioritize children under five years of age, and to pay heed to the critiques made of ABA by the neurodiversity movement. And yet, it is also important to recognize that diagnostic disparities, uneven support systems for caregivers, discrimination in health care and disability provisions, and uneven access to behavioral and other therapies have ontological

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effects. The constellation of disparities that Somali children with autism face leads to greater difficulties with communication, more complex behaviors, and more cognitive challenges. In addition, because behaviors are always racialized, Black children who experience more complex forms of autism are more likely to face additional disparities including segregation, surveillance, punishment, and pharmaceuticalization. Racism operates subtly in institutional landscapes premised on “choice.” When care is patchy and fragmented, “consumers” need to be exceedingly savvy at navigating complex bureaucracies that have behavioral and medicalized strings attached. The more cultural capital and tenacity parents can muster, the better services their children get. As services become consumer-­ directed, business knowledge and skill in budgeting, oversight, and management become requirements for parenting a child with a disability. The system disadvantages parents who work full-­time, those without cultural capital or education, and those who experience language barriers. Many Somali families face difficulties in getting their basic needs for food and housing met, not to mention in navigating a very complicated and fragmented system of care for their children. The amount of bureaucracy one invites into one’s home when parenting a child with a disability is astounding. Parents face challenges in battling to get the services and care their children need; and if one is also managing poverty and housing constraints, the obstacles can become overwhelming.

T H REE

Approaching Autism Otherwise

Every May between 2005 and 2017, Adar, Idman, and Abdullahi drove to Chicago to attend Autism One, an annual conference where alternative autism practitioners present research findings and advertise therapeutic products. For them, attending Autism One is almost a pilgrimage. It is sacred. They take succor in learning new ideas, finding new therapies, and conversing with other families who have children with autism. I attended Autism One in 2014, 2015, and 2016. Each time, I spoke to Adar and Idman about their impressions, but they were hesitant to spend much time with me. Even in 2016, after I had spent six months with them and their community, they only reserved a short five-­minute conversation to catch up with me in the hallway. They had their priorities straight; they needed to spend every minute attending to their purpose, finding new therapies to support their children. After each conference, the three of them discuss what they found, conduct further research online (including chatting with practitioners and people who have used various products), and consult with religious leaders and Islamic scholars about remedies’ cultural relevance and appropriateness. In fact, Abdullahi is a religious teacher who provides the group guidance on religious practices and therapies. The group prays to Allah together to decide on a course of action before trying new therapies on their children and reporting the results to other support group members (interview, 30 June 2015). In this chapter I explore why Somalis, like so many other parents of children with autism, seek out alternative approaches to autism. There is a wide array of practitioners, scientists, and parents associated with what I am calling the “alternative autism movement,” or AAM. Members of this movement consider autism a “whole body disorder” caused by a series of environmental injuries that wreak havoc on underlying immune, gut, cell, metabolic,

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and nervous systems, resulting in behavioral symptoms. For this movement, the steady upsurge in the incidence of autism is the result of environmental crises associated with hyperindustrialization, including the multiplication of required vaccinations; exposure to heavy metals; overprescription of antibiotics; widespread use of plastics, pesticides, and herbicides; reliance on genetically modified agriculture; and heightened pollution. Movement adherents have developed a series of widely used but controversial “biomedical” treatments, which they distinguish from treatments focusing on behavior, like ABA. These “biomedical” treatments include special diets, vitamins, supplements, chelation (a metal extraction procedure), and hyperbaric oxygen (Silverman 2012: 168). The adherents consider autism an illness acquired through environmental exposure after birth, and believe that the use of biomedical therapies can lead to recovery. Practitioners in this movement meet regularly at scientific and parent conferences, and a series of organizations, research institutes, and sponsors are involved. Following other scholars, I refer to this approach as a coherent heterodox movement with a unique etiology and treatment protocol for autism (Eyal et al. 2010; Silverman 2012; Decoteau and Underman 2015). In the history section below, I explain the precise groups involved, but to avoid confusion I refer to the movement as a whole as the “alternative autism movement” (AAM). It is impossible to know precisely how large the movement is, but it is very common for parents of children with autism to use complementary and alternative medicine. Different sources suggest that from 28 to 95 percent of families have tried alternative therapies (Levy and Hyman 2015; Höfer et al. 2017). Many of the Somali families I interviewed had participated in AAM in some form. When I attended Autism One, I often ran into Somali parents from Minneapolis and Toronto. Many of the support group members from both Toronto and Minneapolis regularly visit doctors and use treatments promoted by AAM. Many also read books written by AAM professionals, and debate the epistemology and ontology of AAM in the support groups. Yet, in this chapter I illustrate that Somalis’ participation in AAM is distinct from that of their white counterparts. First, as the introductory story illustrates, Somalis do not use AAM in isolation; it is only one facet of a broader hybrid approach to healing. Second, Somalis often turn toward AAM therapies and ideologies for reasons related to their experiences as refugees. Third, Somalis’ “misfit” into AAM, a movement made up of racially and economically elite individuals whose approach to autism instantiates their privilege. They often treat Somalis as the exception that proves the rule, rather than as accepted members of the movement. Somalis also

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struggle to make sense of the inequality they face, and they distance themselves from other AAM parents who do not experience these disparities. AAM is an epistemic community in its own right. Although Somalis borrow tenets, epistemologies, and organizing strategies from AAM, they nonetheless forge unique epistemic communities centered on a pluralistic approach to autism and a hybrid methodology for treatment—­rooted in their experiences of diaspora. As I have explained in the introduction to this book, epistemic communities unite around a particular theory of cause and a particular set of remedies, and they exercise heterodoxy. Although these communities exist in a broader field and share similar theories and therapies, each epistemic community is “structured in dominance” by a core feature. The defining feature of the AAM epistemic community is a rejection of the mainstream medical model and clinical standards of evidence. Their heterodoxy, which informs the techniques they develop, structures this community in dominance. For Somalis, this is not the case. Somalis’ ontological position in the world as diasporic migrants informs their epistemology and methodology of autism. Their borrowing of tenets from AAM is another example of how they straddle and syncretize knowledge practices and theories to make sense of their own unique experiences with autism. Comparing the epistemic communities that Somalis forge to those of AAM illustrates how positionality matters for epistemic claims-­making. Although the groups share some theories of cause, each community of practice articulates a structural critique with a purpose different from that of the other. One of the primary goals of AAM is to challenge mainstream scientific methods and critique the way medicine is practiced in North America. Somalis’ structural critique stems from the fact that their children face more disabling forms of autism because of the dislocation they have experienced as refugees and the unequal systems of care they access to support their children’s needs. Therefore, their structural critique emerges from their recognition of the embodied effects of inequality. Somalis’ experiences of misfitting into both mainstream and alternative approaches to autism contributes to their sense-­making. The epistemic labor they expend in navigating categorical and institutional infrastructure as outsiders requires articulation; in their approach to autism, they assemble a structural critique that explains their own exclusion. I begin this chapter by explaining why Somalis turn toward alternative approaches to autism. They share certain motives with parents of diverse race and class backgrounds, and yet they also join AAM because of their unique experiences as refugees. I then provide historical background on the

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alternative autism movement and explain its unique epistemic and ontological approach to autism. I end by explaining how Somalis’ beliefs diverge from those of AAM members and provide a theory of racial misfitting and epistemic articulation.

Learning to Approach Autism Otherwise When children are given an autism diagnosis, most mainstream pediatricians explain that autism is an incurable lifelong disorder, though early access to ABA could improve language capabilities and difficult behaviors. Many parents from diverse backgrounds find mainstream approaches to autism problematic, and turn toward heterodox explanations and therapies. Somalis have motives similar to those of other parents. First, conventional doctors offer no hope to parents of children with autism, especially those with intellectual disabilities. This has likely changed as ABA has become more accessible, but it was certainly the case for the Somali parents I interviewed whose children were diagnosed in the 1990s and 2000s. [T]here’s not one conventional doctor who says there’s hope for treating autism. They say it’s something you cannot heal. Everybody was telling me, “This is the way he is, and that’s it.” . . . They told me that if a kid has autism, there’s nothing you can do about it. . . . But his diet was very restricted and he had GI problems, and they couldn’t tell me how to help my son. I even took my child to a specialist, a nutritionist, and he said, “Sorry, I cannot help you.” I was devastated, but I never give up on my son (Idman Roble interview, 6 June 2014).

As I have explained, many children with autism suffer from a series of “comorbidities,” including eczema, allergies, sleep difficulties, gastrointestinal problems, and dietary restrictions. Simonoff and colleagues (2008) found that 70 percent of children with ASD had at least one comorbid disorder, and 41 percent had two or more. Mannion and colleagues (2013) found that 79.3 percent of children with ASD had at least one GI symptom, and 80.9 percent had sleep disorders. Despite the frequency of these conditions in children with autism, doctors often do not offer children who have them much hope for relief. And, as Adar explains in the next quote, the focus on behavioral therapy is not helpful to parents who are dealing with serious biological dysfunction: When I first started meeting other parents who had children with autism, they were talking about ABA, but you know what I was asking? Ali is not eating

Approaching Autism Otherwise  /  109 food and he’s not sleeping and he has diarrhea. How can I help him? . . . And people are, you know, telling [me], there’s ABA style that you can give one-­to-­ one, and my mind is not in ABA. My mind is [in] another world, which is, you know, how to get [him to] sleep, how to feed him, because there’s a . . . diarrhea nonstop that is going on with him. . . . And no one helped me at all . . . until I became savvy in the computer and . . . [found] out there’s [a] biomedical way that you can help with the diet. . . . But at first, everybody was talking about education. How could you educate somebody who’s crying nonstop, who cannot sit, who cannot sleep, who [has] ten, twelve diaper changes a day? How could you make him sit and learn? (Adar, FGD, 5 June 2014)

According to conventional wisdom, these comorbidities are simply co-­ occurring. Rather than a simple correlation, however, the parents I interviewed felt these physiological symptoms offered a causal explanation for autism. For these parents, autism is not a neurological condition or a set of behavioral idiosyncrasies. Rather, it manifests as a set of behavioral conditions that signify deep underlying biological disorders affecting the body’s immune system, microbiome, metabolic system, and cellular function. But this ontology of autism butts up against conventional explanations of autism. For mainstream physicians and researchers, autism is a brain disorder that is irreparable and must simply be managed like any other chronic condition. [Mainstream doctors] brush it off with behavior. They think it’s just behavior. If you understand, if you see the pattern going on, you can tell. These kids are really sick. And if you can make the pain and inflammation go away, then they can function. That’s when they start to—­sitting down and learning. . . . If you catch them when they first get their diagnosis, when they’re two years old, if you help them, education-­wise, the diet, and the GI, and all those things—­if you help them, combination of those things make a difference. If they don’t become normal kids, at least they will became [as] normal as they can be. They can function [on] their level and they can, you know, do things (Adar interview, 12 June 2014).

As Adar explains, addressing these physiological symptoms allows children to concentrate and succeed when given behavioral therapies. Like other parents who turn toward alternative therapies, many Somali parents also believe that their children can fully “recover” from autism with the proper therapies. As one mother declared in a focus group discussion, “I know the doctors, they don’t believe someone can improve the symptoms

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of autism, or can get recovered . . . but I’m 100 percent convinced because I see a lot of kids who recover and go to school and [become] A students” (4 June 2015). Mainstream doctors often refute this belief in “recovery,” thus causing parents to pursue alternative therapies. Though the language of “recovery” remains controversial, there is some emerging evidence that some children with autism can lose their diagnoses. Existing scholarship suggests that as many as 13 to 25 percent of children lose their diagnosis over time (Fein et al. 2013; Anderson et al. 2014; Padawer 2014; Blumberg et al. 2016). Some of these studies question whether these children were misdiagnosed to begin with, and others suggest that there was simply an exchange of one diagnosis (autism) with another (ADHD, sensory processing disorder, anxiety, depression, conduct problems, and learning disabilities; Blumberg et al. 2016). Yet other studies indicate that the following factors may be involved for the subset of children who lose their diagnosis after therapy: early age of diagnosis, high IQ and receptive language skills, and early intervention with behavioral therapies (Fein et al. 2013; Anderson et al. 2014). Another common complaint about mainstream doctors’ approaches to autism concerns the atomization of the body and the pharmaceuticalization of care. According to the parents I interviewed, doctors were too quick to prescribe, and did not take the time to understand the broader, interacting bodily symptoms that might be involved. I love the free health care that we have here [in Canada]. We’re really fortu­ nate, and I appreciate that. . . . [But] it’s only for drugs. . . . The approach to health, generally. It’s just to diagnose. Doctors, they don’t know much about . . . nutrition. Can you imagine? They’re not taught in medical school, nutrition (Abdullahi interview, 21 June 2015). You have a stomach pain, they know what to give you. It’s only one or two medications they can prescribe. That’s it. It’s how they learn. If the person has a stomach ache, give this medication. If the person have a earache, give them this. . . . Like antipsychotic medication. . . . If my son is jumping and hyper, [the doctor] will say, “Oh, Idman, if you want him [to] learn and sit down and focus, give this medication” (Idman interview, 15 May 2015).

Distrust also emerges between doctors and parents due to the timing of the onset of autism. This is linked to the most controversial and polarizing disagreement that has emerged in the history of autism: vaccine injury. Every doctor and professional I interviewed told me that the reason why parents believe vaccines have caused autism in their children is that autism’s

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symptoms are not necessarily noticeable from birth,1 and only begin to emerge at the exact time children receive their vaccinations. I was told again and again by parents that the “eighteen-­month shot” (the measles, mumps and rubella [MMR] vaccine) was the cause of their children’s autism, or the final causal pathway. Because the medical establishment refutes this theory, parents’ beliefs about vaccine injury often motivate their pursuit of alternative therapies. Another disagreement about onset is whether the child has “regressed.” Regressive autism describes children who reach developmental milestones, like language acquisition, and then begin to lose skills progressively at eigh­ teen to twenty-­four months of age. On the basis of a review of eight-­five articles representing 29,035 ASD participants, Barger et al. (2013) note that regression occurred in 32.1 percent of the cases, at a mean of 1.78 years.2 Whether or not regressive autism is a documented subtype of autism, how the regression is measured or defined and what causes it are subjects of contention in the medical literature.3 Regressive autism has been called into question because parents claim that their children have regressed after getting routine vaccinations. And yet, the parents in my study are outraged when doctors, who barely know their children, suggest that their children have been autistic from birth. One mother explains: Every doctor we talked to about autism, it was clear autism was something your child was born with. “Mom, you just missed the early symptoms.” . . . They were so insistent that it was present from birth, and we were so insistent that it wasn’t. I basically had said, “Well, if you’re basing your diagnosis on the fact that it was present from birth, then you’ve got the wrong diagnosis.” I was confident. Nobody was gonna convince me I had missed something. I knew I hadn’t (Ellen Bolte interview, 8 December 2014).

In sum, then, Somali parents come to distrust the orthodox approach to autism for many of the same reasons as other parents do: doctors gave them no hope and said they simply needed to accept the diagnosis; doctors told them they were wrong about the onset of their children’s symptoms; doctors offered no relief to children suffering from GI problems and skin and sleep disorders; doctors failed to recognize the seriousness of these conditions and their relationship to autism; and doctors’ overall approach to health care was to diagnose and then prescribe medication. And yet, Somalis also turn toward AAM because of their experiences as migrants. Safia’s story in chapter 1 illustrated how some Somalis recognize the importance of changing children’s diets and introducing vitamin

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supplements because they notice improvements in their children’s behavior when they travel to East Africa. Abdullahi believes that the fundamental rea­­ son why Somalis are so vulnerable to autism—­the thing that makes their autism unique—­is a shift in vitamin D exposure. He explains: The vitamin D I think is very crucial. . . . Vitamin D is . . . one of the keys of autism, especially in our community. The reason is, we came from tropical country. The equator sign was eighteen miles away from my home. . . . I came here [Toronto], cloudy, and we were not taking vitamin D. Mother was not taking vitamin D. . . . People mostly are indoors. . . . Their vitamin D is very, very low. Vitamin D is very important for immune system, for a lot of things. One of the reasons why Somali people have autism . . . more autism than the rest of the population, is vitamin D. Because our mothers, first their skin color . . . they came from a sunny place. People, like your skin color, you don’t need a lot of vitamin D. Just, if you stay in the sun maybe ten minutes, fifteen minutes, you’ll be fine. You get your daily vitamin D, but we need more. Also, our mothers, they cover themselves [with the hijab]. Nobody actually is telling them that they need to take vitamin D (interview, 21 June 2015).

Abdullahi’s beliefs about Somalis’ unique vulnerability have influenced his use of alternative remedies, which include vitamin supplements and diet changes. I will return to his discussion of skin color later in this chapter. In addition, as I mentioned in chapter 1 and will return to in chapter 6, many Somalis believe that the disruption and dislocation caused by migration, coupled with an overly aggressive approach to hygiene and the overprescription of antibiotics in North America, has radically altered Somalis’ gut bacteria, rendering them vulnerable to autism and other neurological conditions. This theory centers Somalis’ experiences as migrants, and also lends itself to the use of alternative therapies, like special diets and probiotics. Finally, several parents I interviewed who frequent AAM doctors learned about alternative therapies through Somali transnational networks, like the conference calls I explained in chapter 1. Imams, Islamic scholars, and Somali health providers often offer advice to other Somalis through telephone conferencing and mosques (interviews, 15 and 30 June 2015; 4 and 8 October 2015). Practical advice about where to go and what to try comes directly from community members as trusted sources of knowledge. If the information is shared through these channels, Somalis are confident that the therapies are culturally and spiritually appropriate. Therefore, their use of alternative therapies is often informed by their unique position as migrants and refugees.

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The Alternative Autism Movement as Epistemic Community In this section I provide background on the history, epistemology, and ontology of the alternative movement. The alternative autism movement was started by a group of well educated parents and scientists who were frustrated with prevailing psychogenic theories of autism, which suggested that autism stemmed from a “maternal lack of genuine warmth” (Kanner 1949: 422). These “refrigerator mother” theories were dominant from the 1940s through the 1970s, promoted in the work of Leo Kanner and popularized by Bruno Bettleheim (Kanner 1949; Bettelheim 1967; Silverman 2012: 66–­70).4 In 1964, Bernard Rimland, a psychologist and father of a son with autism, published his landmark book Infantile Autism, in which he refuted psychogenic theories and argued that autism was a neurological disorder (Rimland 1964; Eyal et al. 2010). He effectively launched the alternative autism movement. He established the Child Behavior Research Institute in 1967, which later became the Autism Research Institute (ARI). Rimland used ARI to promote alternative biomedical interventions for autism. He collected information about the successful implementation of various treatments from parents themselves (Baker interview, 1 June 2016). This became the basis of the AAM approach. Rimland, pediatrician Sidney Baker, and chemist Jon Pangborn launched Defeat Autism Now! in 1994. This organization brought together parents, physicians, and researchers devoted to a “biomedical,” as opposed to behavioral, approach to treating autism. DAN! set out to provide parents with necessary therapies before the slow pace of scientific funding and experimentation could catch up (Pangborn and Baker 2005: 3). A program of ARI, DAN! is the only AAM organization that develops its own treatments. Laboratories affiliated with the organization conduct studies, do blood work for patients, and develop drugs, vitamin supplements, and treatments like hyperbaric oxygen and chelation. One of the defining features of AAM is that parental expertise is taken seriously. According to Sidney Baker, AAM practitioners have a disdain for doing science just for the sake of academic credentials and career advancement. Rather, they pursue science in the service of parents and children (interview, 1 June 2016). AAM has built its reputation and professionalism on the credo that parents are the best experts of their children. And yet the movement does not simply recognize parents’ therapeutic knowledge; it welcomes them as co-­producers of knowledge. AAM members reject science’s supposed disinterestedness in two ways. First, they believe it to be

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false, and seek to show how mainstream science is dependent upon and in collusion with the government and the pharmaceutical industry. Second, they reject the purported universality of scientific knowledge. They demand that science be interested and partial. Cultivating parental credibility is a form of distinction (Bourdieu 1984) for AAM doctors, many of whom are also parents of children with autism. Honoring and valuing parental knowledge is an embodied proficiency that marks them as definitively distinct from their mainstream counterparts. For doctors affiliated with AAM, parental credibility is far more valued than academic achievements or university positions. Because parents have shown themselves to be powerful forces in the history of autism mobilization, having parental credibility gives the alternative movement strength as a heterodox movement within the field. On the one hand, AAM challenges the purportedly disinterested approach of mainstream medicine and scientific knowledge production. AAM doctors value the expertise of parents and invite them to the research table. On the other hand, AAM practitioners vie for professional legitimacy within the scientific field. There are several reasons for this. First, they seek to challenge the way science and medicine are practiced in Canada and the United States, and to set themselves up as better providers of patient care. In addition, they want alternative therapies to be covered under private insurance so that parents do not have to pay out of pocket. Further, they have had to defend their scientific legitimacy and medical competency because of a series of controversies. Many of their members have lost their medical licenses and have been investigated by the Food and Drug Administration because of therapies they have promoted, including chelation and hormone inhibitors. Finally, the vaccine injury theory, now fully refuted by the broader scientific community, is a main tenet of AAM. Practitioners of AAM supported the plaintiffs in the Omnibus Autism Proceedings (OAP), where 5,600 parents sought compensation from the federal government for vaccine injury, which they believed had caused autism in their children (Decoteau and Underman 2015). Ultimately, the parents and their AAM allies lost the cases, and mainstream scientists often use the findings of the OAP to claim that the vaccine injury theory has been officially debunked. Andrew Wakefield, who is infamous for his study showing that the MMR vaccine led to inflammatory bowel disease and the development of autism in a small subset of children, is a celebrated member of AAM. The Lancet, where his findings were initially published in 1998, retracted the article, and Wakefield lost his medical license in 2010. Wakefield and other controversial figures who have lost their medical licenses play a large role in the mythology of AAM. They are seen as

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heroes—­people brave enough to stand up to the pharmaceutical industry, the government, and mainstream science, and who are courageous enough to confront the powers that be in the name of children with autism. These controversies close the ranks; they reveal the boundaries of the community, and illustrate the sacrifices discredited doctors have made to save autistic children. But these controversies have also been costly for the doctors and organizations involved, and they have resulted in the need to further professionalize to ward off legal scrutiny and persecution. As such, AAM challenges mainstream medicine, while nonetheless seeking scientific legitimacy. After Rimland passed away in 2006, Stephen Edelson took over as director of ARI. DAN! was shut down in 2012. Edelson explained that ARI decided to focus its attention on research: We felt that it was important to really focus all of our attention on research, because in that way, parents would no longer have to try to convince the physicians to evaluate their child’s immune system or GI system or even metabolism. That there’d be evidence, enough evidence that the doctors would be convinced that it’s worth looking into. Then also, insurance companies would start paying for intervention, so [we] really need to have these biomedical interventions be evidence-­based. Again, it would be a lot easier for those on the spectrum to receive these interventions (interview, 10 June 2016).

According to Baker, Edelson was fearful of being sued for the radical ideas people were presenting at DAN! conferences, and he wanted some distance from it (interview, 1 June 2016). In the same year that DAN! was folded, Baker, Dan Rossignol, and Elizabeth Mumper—­physicians active in the DAN! movement—­started a different organization, the Medical Academy of Pediatric Special Needs, or MAPS (Baker interview, 1 June 2016). MAPS continues to hold annual or biannual conferences on alternative autism research and therapies, but restricts participation to professionals in the field, as opposed to parents. In fact, physicians and practitioners can earn advanced medical training credit for attending these conferences (fieldnotes, 28 April–­1 May 2017). These efforts to maintain credibility and professionalization exist alongside a very avowed heterodox stance against mainstream medicine and its approach to autism. In fact, this position-­taking in opposition to medical doctors and scientific standards of evidence is what structures this epistemic community in dominance. Explaining AAM’s core epistemic tenets is the best means of illustrating its heterodoxy. I have already explained one of

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the main epistemic tenets of AAM: that autism is a “whole body disorder” caused by dysfunctions in immune, metabolic, gut, cell, and gene-­regluation systems. A pioneer in the field describes this tenet in her book: “Members of DAN! are bonded by their belief that autism and associated ASDs are primarily medical disorders with behavioral and cognitive impairments that are by-­products of the physical illnesses these children suffer” (McCandless 2005: 4). The AAM movement suggests that there may be a cluster of insults caus­­ ing autism, including vitamin deficiencies, toxicity, oxidative stress, neuro­­ inflammation, mitochondrial dysfunction, methylation problems, immune irregulation, and gut dysbiosis. Because mainstream medicine presumes that the body is composed of atomized units and is divided in its specializations, it cannot grasp the bigger picture that autism requires (Herbert 2012: 210). According to AAM practitioners, a “systems biology” approach is required to understand how parts of the body interact (Herbert 2012: 211). “General systems theory presents ideas about causality in which a web of interactions produces a result that is not as easy to blame on a single factor” (Baker 2004: xiv). Rather, healthiness is about finding a balance. For Baker, the idea that discrete causal agents operating in linear causal chains produce disease is not only problematic but “mythological” (Baker 2011). He suggests that we mistake descriptions for causes when we accede that diseases map onto discrete ontological categories in the world: “We speak the names of disease as if they were the cause of their defining signs and symptoms. . . . We carry the false assumption that these diseases exist in nature as they are presented by their names” (22). Instead of employing a linear causal logic, Baker suggests that we should understand the relationship between insults as “nested vicious cycles” caused by a “web of interacting factors” (2008: 42, 45). Conceptualizing these various biological irregularities as interactive and interrelated in vicious nested cycles, like a “Venn diagram” (Baker 2008) as opposed to being linked in a linear pathway, means that no clear causal argument is presented about the locus of impairment. Baker explains: “In traditional medicine, in treating each person as a disease, it is the similarities that count. As I am defining it, integrative medicine means understanding health as an ever-­shifting state in a complex web of interactions, which, when working in harmony, yield a dynamic balance that we experience as feeling well” (Baker 2004: xvi). Baker refers to this as a distributive, as opposed to a hierarchical, logic (interview, 1 June 2016). When I first began attending conferences associated with AAM in 2014, I was completely confused. It seemed that the presentations were scripted, but it took me a long time to catch on to the language and the rubric. The

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presentations are scientific performances, illustrating the embodiment of a heterodox habitus. Presenters include their credentials and qualifications on the first slide, and then quickly move through published articles on the respective topic, flashing from one article to the next in rapid succession. It is not always clear how the scientific articles relate to one another or to the presentation. Often the number of causal theories being thrown into one forty-­five-­minute presentation is dizzying—­the presenter will skip from gut dysbiosis to immune irregulation, to mitochondrial dysfunction, and to genetic single nucleotide polymorphisms (SNPs) within the space of a few minutes.5 I had no idea what was being “explained,” or how these various disorders were causally linked together. At my first conference, I was frantically writing notes and looking up biological terms on Wikipedia. At some point I noticed that no one else in the audience was writing anything down or even really paying attention. But the questions from the audience always related to very specific details covered in the talks. I could not figure out the overall logic; how did these different theories of harm fit together? Over time, I came to understand that there is a common theory of autism that motivates these presentations and shapes their reception by the audience. Baker’s explanation of the nested cycles and a diffuse logic of causality helped me grasp this core epistemic tenet associated with AAM. The “systems” approach informs AAM doctors’ clinical practices. AAM doctors usually begin with a long and detailed patient history, followed by three main approaches: nutritional therapy, supplementation therapy, and detoxification (Bock and Stauth 2007). Often the AAM approach begins with diet because it is seen as foundational and the gut holds a very central, causal role in the alternative ontology of autism. But this is also a test for the parents. If they cannot commit to a specialized diet and its implementation for their child, then they probably will not be able to abide by the requirements of treatment (Coombs interview, 12 June 2015). Therefore, the doctor begins by getting the parents to institute a gluten-­free, dairy-­free, and sugar-­free diet, or a specific carbohydrate diet. A battery of tests will also be ordered to measure deficiencies in core vitamins, allergies, heavy metal loads, yeast, enzymes, and antibodies. The second step is to begin probiotics and supplements, including “vitamins, minerals, amino acids, essential fatty acids, enzymes, and herbals” (Bock and Stauth 2007: 244). The third step is to lower the heavy metal load through some form of chelation therapy, and to boost glutathione production.6 For AAM doctors, impaired detoxification creates oxidative stress (which destroys cells), chronic neuroinflammation, and toxic buildup in the bloodstream (Bock and Stauth 2007: 294). While this is a general outline, the approach is meant to be individually tailored

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to each child, and parents are asked to keep meticulous records on a daily basis, which should be submitted to the doctor so that adjustments can be made (Silverman 2012: 177). Baker highlights the fact that this is not a protocol because the focus is on the individual: “ We have a way of thinking about addressing individuality in the context of an epidemic that has environmental causes” (Pangborn and Baker 2005: 67). From its outset, then, AAM based its epistemology on three related con­ victions: (1) that parents’ knowledge of their children should be given priority and should be the basis for a generalized ontology of autism; (2) that the mainstream approach to autism is problematic because it does not take parental knowledge seriously, mistakes symptoms for diseases, and overly atomizes the body instead of understanding its integration; and (3) that because autism looks different in each child, the “gold standard” of the randomized controlled clinical trial is less effective than the “silver standard” of “clinical efficacy” (Eyal et al. 2010: 243; McCandless 2005: 117). Therefore, a distinct approach to evidence is another unique trait of the movement. Here is how Edelson characterized the experimental design preferred by AAM practitioners: Well, the double-­blind placebo controls—­it’s just one way. I know a lot of people call it the gold standard, but there’s volumes of different experimental designs and the goal is to be [as] objective as possible. Actually, ABA, which is considered evidence-­based and accepted by the community, most of the research supporting that intervention has been single-­subject designs, A1B1A2B2 designs, because there’s so much individual differences within autism.7 The problem with doing a placebo control group study is that, say, if you take thirty people receiving the treatment and thirty that don’t, and that [people with autism constitute a] heterogeneous population, a possible 10 or 15 percent are gonna do great, but when you average that, it shows the intervention to be useless. As far as science and doing research, the double-­blind placebo crossover is not the only one. I know some people who aren’t savvy of science or experimental design think it’s the only way, but there’s many different ways to objectively document whether intervention is helpful or not. In a parent survey, that just gives researchers an idea of what may or may not be helpful. In general, if you have very large numbers indicating an intervention may be helpful or not, then there’s more, you might say, credibility to that. . . . (interview, 10 June 2016).

At the end of this quote, Edelson is referencing an appendix in the book he coedited with Rimland. At the end of the book they included a statistical summary of the surveys they have been collecting from parents since 1967,

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in which parents are asked to evaluate biomedical interventions they have tried on their children (Edelson and Rimland 2006: 382–­83). There are almost twenty-­five thousand surveys included, and parents ranked whether the intervention made behavior “worse,” had “no effect,” or made it “better.” In the book, Rimland also suggests that parents can conduct their own “double-­blind mini study” by not telling teachers, babysitters, or relatives that the child is undergoing therapy, so that “you provide yourself with an invaluable opportunity to benefit from such unbiased observations” (25). When questioned about the evidence of AAM therapies, many parents cite their children’s improvement as evidence enough: “People say there is no science to support our beliefs about the causes of autism and ways to treat it, but there is plenty of evidence. Just walk into the homes of families who have children with autism. They’ll be happy to introduce you to their science” (McCarthy 2008: 214). The Autism Treatment Evaluation Checklist (ATEC) scale was designed by Rimland and Edelson. The evaluation can be taken online, and the results are emailed to parents.8 It asks parents questions about speech/language, sociability, sensory and cognitive awareness, and physical health and behavior. The ATEC is not a diagnostic tool. Rather, it is designed for parents to use over and over again, to test the effectiveness of different treatments. I attended two “Mother Determined” panels at Autism One in 2014 and 2016, and the parents on the panel introduced themselves by indicating their child’s ATEC score (fieldnotes, 23 May 2014; 6 May 2016). This community of parents, doctors, and scientists is challenging dominant medicine not just because it has developed its own unique ontology of autism but because it invites parents into the experimental process and the creation of scientific evidence. At the 2016 MAPS conference, Dr. Green said: “We’re making practice-­based evidence for this individual, this n of one” (fieldnotes, 30 April 2016). This approach to evidence is associated with the strong emphasis placed on individuality. AAM takes each child to be wholly unique, and treatment is about finding precisely the right combination that unlocks the mystery of that one child. Baker explains: In chronic illness, the idea [is] that you treat a disease, which is still the main paradigm, and that is wrong. It’s the individual who’s the target of treatment. When you depart from that paradigm of disease being the target of treatment, and that you have to have a double-­blind placebo-­control crossover study that shows that treatment A is better than treatment B in treating that disease, and one thousand people who are closely enough alike so that they are matched

120 / Chapter Three in terms of the control group and the regular group. That is the paradigm of medicine still today. Violating that gets mainstream doctors really upset (Baker interview, 1 June 2016).

In sum, then, cultivating parental credibility and expertise, engaging in a systems approach to treatment, and promoting clinical efficacy over randomized clinical trials are core features of AAM epistemology. In fact, reject­­­­ing mainstream medical approaches to healing and scientific reliance on randomized control trials structures this epistemic community in dominance. I have already mentioned several features of AAM ontology: autism is an acquired illness caused by environmental exposures and insults; it is an illness from which children can be recovered, in part because it is a whole-­ body disorder that manifests as behavioral idiosyncrasies that signal core dysfunctions in biological systems. Another important feature of AAM ontology is a sense that the autism epidemic necessitates an urgent response and signals something gravely amiss in the Western world. It is exceedingly common to suggest that children with autism are the modern world’s canaries: I believe that when the science is in, we will see that people with autism are “canaries in the coal mine,” the most susceptible, who are affected first by problems that may eventually reach us all (Herbert 2012: 224). Autism isn’t a disease . . . it is the “output” of a system disrupted, imbalanced, injured, overloaded, stressed by one or more troubling influences. . . . Krishnamurti: “It is no measure of health to be well adjusted to a profoundly sick society” (MAPS presentation slide; fieldnotes, 30 April 2016). The vast and increasing numbers of ASD children are messengers reflecting critical unbalances in the ways we live our lives. In their silences and explosions of feeling, in the disruption of their biochemical makeup, in their obvious incompatibility with our established educational system and traditional medical paradigm, they are literally asking us to see how out of balance we have become, collectively and individually (McCandless 2005: 195).

There is a sense that autism, then, is a sign that modernity has gone awry, and that heightened industrialization has led to hyperhygienization, toxification of water and air supplies, and the overmedicalization of

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society. For AAM members, the autism “epidemic” has been brought about by “catastrophic changes” to our environment: “Toxins proliferate in cities, water, and food; our children’s nutrition has deteriorated since the 1980s; the number of required vaccinations has doubled since 1991; our ability to detoxify has dwindled. These four catastrophic changes created a veritable perfect storm of physical and neurological insult, which struck hardest at our society’s most vulnerable: our children” (Bock and Stauth 2007: 19). But there is an underlying theory of the autistic body that also emerges out of this view. For a few people in this movement, children with autism are harbingers because they are exceptionally vulnerable to growing environmental insults. The boundaries of their bodies and minds are porous, letting environmental damage and overstimulation into their system. And this is what troubles them; they are too much in and of the world. They are highly attuned, and their bodies therefore literally reflect the damaged earth. Dr. Coombs, an alternative doctor who works outside Toronto, suggested to me that children with autism are highly sensitive and, as such, serve as the miner’s canary in environmental, medical, and social ways: Environmentally, of course, more prone to bioaccumulate environmental toxins, so more prone to have mitochondrial dysfunction as a result. More prone to be sickly, more prone to have food sensitivity, more prone to have gut dysbiosis. . . . Medically, they’re more prone to medical misadventure. They’re more prone to have drug reactions. . . . Socially, these are the kids that are socially vulnerable, often socially awkward, shy. . . . They’re tentative. They need lots of reassurance. . . . These are the kids that are intuitive and visionary, often brilliant, artistic. . . . My view is, autism is not a noun. It’s a verb. These kids are autisming. There are a lot of other people out there who are autisming in slow motion (interview, 12 June 2015).

Sidney Baker says that if there were one word to describe a child with autism, that word would be sensitivity. Such children take in too much of the world, and their bodies—­their immune systems and central nervous systems—­remember it. That is what autism is. In fact, we’re talking about children who are—­they cover their ears when they’re acknowledged. They can’t stand the bright light. They can’t stand to be touched in certain ways. They’re sensitive to all kinds of things that have to do with the immune system, especially in the autoimmune way, where you make antibodies against your own stuff (interview, 1 June 2016).

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And so, for members of this alternative movement, the autistic body is a body that is overly sensitive and porous to the detrimental features of our overly modernized world. Some members of this community suggest that part of the problem is changes in reproductive practices. Because older people can now have children through technological intervention, they are having babies that are “not suitable for life.” Inferior genetics are entering the gene pool because . . . when we force to life babies that shouldn’t have been born, then those kids are not suitable for life. They are given drugs to force that baby to life. This [is an] inferior genetic child—­who would have died fifty years ago. . . . But then what happens? We succeed in having this child born, and then it’s put into environment, toxic water, too many vaccines, horrible food. . . . (MAPS presentation, 29 April 2016).

For this AAM practitioner, reproductive technologies have allowed us to have children who otherwise would not have been born, thus leading to an increase in chronic illness. This extremely dangerous eugenic impulse is not common among the alternative movement, but hints of it emerge in certain locations because of the broader critique of the ills of modernity. Another exceedingly problematic and troubling aspect of alternative ontology is that the blame is focused mostly on mothers. At the 2016 Autism One conference, a mother referred to herself as having had a “toxic” pregnancy, in which she engaged in practices that led to her child’s autism. Adar once told me that mothers have “toxic bodies” (8 November 2015). This is to some extent a new way to blame mothers for their responsibility for the development of autism. AAM may have been born out of parents’ frustration with psychiatry for blaming “refrigerator mothers,” but these new theories also place the onus of blame on the pregnant woman (Landsman 2009; Blum 2015; Lappé 2016; Singh 2016). A further disturbing detail of the AAM approach is the exclusive focus on cure and the representation of autism as a wholly negative experience: a reflection of a world in disarray. As such, AAM has been the target of steadfast critique from neurodiversity self-­advocates. Those who claim autism as a neurological identity repudiate the depiction of autism as a symptom of modernity gone awry. AAM has been at least somewhat responsive to these critiques over time. For example, one of the reasons given for the closing of DAN! was that the name suggested that autism needed eradication (Edelson interview, 10 June 2016). The eugenic impulse implied is both

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dangerous and violent. Edelson explains that ARI has begun an adult program for people on the spectrum, and that their basic approach is that people on the spectrum may have biomedical issues that are getting in the way of their ability to hold jobs and have intimate relationships (interview, 10 June 2016). At the Autism One conference I attended in 2016, there was a panel featuring two young adults on the spectrum who had benefited from biomedical therapies (fieldnotes, 27 May 2016). Each presenter explained all the treatments they had undergone over the years, and offered perspective on what they experienced during this time. The young man directly addressed the controversies associated with the biomedical movement: Social rules in society make many topics about biomedical stuff inappropriate to talk about. You can talk this way all you want at Autism One, but in high school, a kid can’t talk about diarrhea problems. We need to find ways where kids can talk about these issues freely with other people. Disqualification of a few doctors who work on autism should not invalidate all biomedical doctors. . . . We hope more people with autism are able to communicate their biomedical issues (fieldnotes, 27 May 2016)

But it was also at this Autism One conference where for the first time I saw a small group of protesters outside the conference hotel holding signs that said, “Compassion, not cures.” Although members of AAM indicate that there are social causes for the increase in autism—­environmental toxins, a rise in the number of childhood vaccinations, and a depletion of nutrition in the Western diet—­their response is incredibly individualized. Members have mounted a well-­ organized movement against vaccine compliance, but this is the only political advocacy in which AAM engages. Their argument against mandatory vaccination is that it impinges on individual rights. As such, white privileged parents and scientists associated with AAM take what could be a searing critique of Western allopathic medicine, North American food industries, and environmental destruction, and turn it into an overly individualized approach to their own children’s health.

Racial Misfitting and Diasporic Epistemologies AAM ontology denotes an implicit racial ideology. Because AAM members believe that autism is caused by the ills of modernity, there are hints of both a eugenic logic and an idealization of premodernity, often symbolized by an

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exoticized image of “Africa.” The presumption is that people “in Africa” are healthier because their bodies have not been contaminated by modernity. Consider, for example, this excerpt from one of Baker’s articles. In Chad, my patients were among the poorest in the world, but they were well nourished and generally appeared to be very healthy, truly beautiful people who were normally parasitized by plasmodia, schistosomes, ameobae, and nematodes. They were conspicuously free of chronic allergies and autoimmune diseases (Baker 2011: 28).

As I will explain further in chapter 6, this logic often emerges in gut bacteria research because one prevailing theory is that each gut has a “home,” and when it is wrenched from that environmental niche it has a difficult time adjusting to a new environment, especially one that overindulges in antibiotics, antiseptic sanitizer, and pesticides. The Somalis, then, are perfect examples of this theory of migration: they are interpreted as having moved from a purportedly “premodern” African locale to an overly civilized Western nation. In this way, Somalis embody the burden of modernity, and as such, are invited into the AAM world as exemplars of their ontology. Needless to say, this is a deeply colonialist and essentialist approach to race and “development,” which some Somalis share. When Somalis suggest that their bodies are poorly prepared for life in Western countries, or that their Black skin makes the absorption of vitamin D more difficult, they reify biological theories of race—­a point to which I return below. The AAM world is inhabited by mostly middle-­to upper-­middle-­class white parents and professionals. And this privilege is instilled in their approach to autism. Like other vaccine-­skeptic parents, many of the wealthy white parents involved in AAM attempt to manage growing scientific uncertainty and environmental threats by micromanaging their children’s health in an increasingly individualized way (Hobson-­West 2007; Senier 2008; Kirkland 2012; Reich 2014; Lakoff 2015). Within the biomedical approach to autism, this includes making decisions about and intervening in a whole host of biological processes—­from supplements to improve synaptic, metabolic, mitochondrial, and epigenetic function, to holistic nutrition, and the management of heavy-­metal absorption. The number of ways to intervene and the permutations possible are vast, and parents seek to hit on just that right combination that will be the key to their child’s improvement and recovery. Each lab test, supplement, vitamin, complicated procedure (like chelation or fecal transplant), and doctor visit necessary for managing this complex balancing act costs money. Despite the fact that AAM blames

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pharmaceuticals and technology for increasing environmental degradation and risk, it nonetheless introduces new biomedical drugs, treatments, and technology to combat the ills of modernity. The outlook, interventions, and costs associated with AAM reflect a privileged position in the world. And AAM members’ views on race are underdeveloped and problematic. At the Autism One conference in May 2016, one of the keynote speakers spoke of the history of eugenics in the United States (fieldnotes, 28 May 2016). The person introducing the speaker said that, as parents of children with disabilities, “we should find this history revelatory.” Several hundred people were in attendance, the huge lecture center was packed, and what most interested me was the response from the audience. Judging from the gasps, mutterings, questions at the end, and conversations in the hallways, audience members had never heard this history or anything about eugenics, even though they were well-­educated parents who distrusted mainstream medicine. The keynote speaker knew his audience, and began by speaking directly to AAM parents’ sense of being ostracized for speaking truth to power: I’m going to discuss the history of fake science that poisoned the twentieth century. Going upstream against fake information, you are not alone. . . . Everywhere we go, we encounter fake history and fake information—­and it takes courage and corroborated information to stand up to those fake facts. Not only do we see forgeries in science, . . . but forgeries in history—­cherry-­ picking the facts (fieldnotes, 28 May 2016).

And he ended with a final flourish, to a standing ovation: I’ve given you the pinnacle of science in the twentieth century. Lesson here: when people say never again, they mean never again should a person be judged by the people with big money and power and government. We should allow people to be judged not by the color of their chromosomes but by their best human potential (fieldnotes, 28 May 2016).

Interestingly, the presenter never spoke about eugenic practices against people with disabilities. Nonetheless, the audience was amazed and excited to discover this seedy and racist underbelly of Western allopathic medicine. It proved to them what they always knew: science was biased! And in general, this is how I viewed most AAM members’ engagement with Somalis. They saw the Somalis as a unique and special case that corroborated AAM ideology and ontology. The Somalis were valued and received as an exception that proved the rule.

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For example, Adar and Idman told me that Generation Rescue, a renowned nonprofit organization that promotes vaccine skepticism, sponsored their first trip to Autism One in 2005. They chuckled as they told me that all the American citizens they met at the conference came up to them to apologize on behalf of their government for giving their children autism. “They felt sorry for us because . . . the vaccine did this to our kids. Their countries are responsible” (15 May 2015). Idman and Adar thought it was funny that people would apologize to them on behalf of the Western world. In an interview, two alternative service providers in Minneapolis told me that they “felt sorry” for Somalis because they had such a high rate of autism, and that they “so badly wanted to help them” (6 November 2015). But one provider went on: “Sometimes I feel like we want to help them more than they want the help.” For example, the service providers orga­­ nized an information session for Somalis at a large alternative autism confer­ ence. But people did not show up, and the service providers felt personally affronted. These stories reveal a pedantic and pitying attitude which holds Somalis apart. Somalis are embraced not as insiders, but as interesting and misfortunate cases. They are welcome at the conferences and clinics and laboratories of AAM, and their money is certainly spent there. However, I found that Somalis approach AAM as “outsiders within” (Collins 1991) the movement in three ways: financially, racially, and epistemologically. Doctor’s visits, lab tests, and treatments required by AAM are exceedingly expensive and not covered by health insurance. Some of the parents I interviewed pinched and saved their money, went on road trips together to save on gas and hotels, and spent exorbitant percentages of their limited incomes on alternative therapies for their children. Some saw the sacrifices as worthwhile because they saw improvement in their children’s behaviors, or felt hopeful because they were doing all they could to help their children. Other Somalis, however, questioned the price of alternative treatments, lab tests, and visits. They felt that certain participants of AAM were only out for material gain. For example, one parent told me that he attended Autism One and saw “a thousand vendors . . . and every vendor is just trying to sell his products. . . . At first, you are desperate and think, ‘Oh, this is the cure for [my] son. This is the treatment’” (interview, 1 November 2015). In fact, he tried several alternative therapies and visited multiple AAM doctors, each time paying more than $1,500 for the lab tests and visit. Finally, he said that while he felt some alternative doctors really wanted to help him, it was so expensive that he had to give up. Fatima Kediye, a social worker who works closely

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with the Toronto support group, told me that she harbors serious doubts about the treatments being peddled at Autism One. She said that the people selling products there (not the AAM doctors) take advantage of desperate parents, and she always encourages Idman and Adar to be very careful and do extensive research before trying anything new. She also tells them to document everything they give their children and to catalogue the results (interview, 11 July 2015). Regardless of whether they invested in AAM therapies or distrusted AAM doctors’ motives, Somalis are still financially marginalized within this world of privileged parents who can afford to pay for expensive services out of pocket. Some Somalis believe that their racial and national marginalization contributes to the intensity of the symptoms their children experience. Sometimes they reify biological and essentialist theories of racial difference as they try to come to terms with the ontological effects of inequality. For example, Adar was very taken with a controversy that arose while I was conducting ethnographic research for this project. In August 2014, William Thompson, who was a former employee at the CDC, made the following public statement: “I regret that my coauthors and I omitted statistically significant information in our 2004 article published in the journal Pediatrics. The omitted data suggested that African American males who received the MMR vaccine before age 36 months were at increased risk for autism” (Thompson 2014). Thompson said that he did not think vaccines cause autism, and that parents should not avoid vaccinating their children. However, this “whistleblower” story made tremendous headlines among the vaccine-­skeptic movements. Adar told me this story over and over again. For her, it confirmed that her Blackness explained her sons’ greater vulnerability to autism. The CDC, 2004, they did the study in Atlanta, Georgia. They [found] out . . . [that] Black kids, they got more brain damage than [their] white counterparts, when they get their MMR before [the] age [of ] three. . . . We all live [in] the same climate, so, definitely, that’s what’s happening to Somalian [sic] kids. . . . How, all of a sudden, when we came here [we started] . . . experiencing [autism], and we didn’t have it before? Tell me. It doesn’t make any sense. When all this comes together, then you realize it. This is why—­even when we’re doing biomedical [therapies], and white kids, they’re doing the same thing. The white kids, they recover easily, just like that [snaps fingers]. . . . For us, it’s difficult. . . . The damage is really, really, it’s deep and hard to combat, honest to God, Black kids (Adar Hassan interview, 15 May 2015).

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Because Somalis share skin color with African Americans and Canadians, Adar reasoned that this was the basis for the more disabling forms of autism Somali children develop. When I asked why skin color would matter, she said that Black skin impedes the absorption of vitamin D (FGD, 4 November 2014). Several other interviewees, including Abdullahi, shared this view. For Adar, this was the only explanation she could find to make sense of Somalis’ vulnerability to autism in such high numbers. It also provided her with an explanation for why white children she knew were recovering, but her own children were not. This is an essentialist and biological account of racial difference. But I believe that Adar’s preoccupation with this story was her way of grappling with the ontological effects of racial disparity. Alondra Nelson argues that the Black Panthers sometimes strategically wielded biological definitions of race to support broader ideological claims—­for example, when they argued that sickle cell anemia was an embodied vestige of slavery (2011: chapter 4). In this way the Panthers controlled “how and when race could be legitimately deployed” (21) in medical narratives. Similarly, I believe that Adar and other Somalis I interviewed sometimes employed biological theories of racial difference because they were struggling to make sense of the embodied effects of dislocation, medical neglect, and racial marginalization. As I explained in chapter 1, Somalis deploy a politics of distinction, insisting that they experience autism differently than other North Americans. First, they believe they are particularly vulnerable to autism. Again and again in interviews, Somalis would tell me that they knew this was true because every other family in the high-­rise complexes where they lived had at least one child with autism. Second, they believe that their children suffer from more disabling forms of autism, manifesting in lack of communication, co-­occurring intellectual disabilities, comorbidities associated with gut dysfunction and seizures, and more self-­injurious and aggressive behaviors. Third, they believe that autism is caused by conditions unique to the West, and that they are more vulnerable and suffer more deeply from it because their bodies are ill-­prepared for the environmental toxicity of life in North America, and because of their experiences of dislocation, racism, and xenophobia. Somalis forge their own epistemic communities to make sense of these unique experiences with autism, which they believe set them apart from Americans and Canadians with autism. While they may borrow therapies and causal theories from AAM, they do not believe they experience the world of autism in the same way as the white middle-­class families who populate AAM events.

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In addition, Somalis’ ontological position in the world as diasporic populations influences their epistemologies. Experiences of the diaspora highlight the mutually constitutive and transformative relationship between cores and peripheries, and allow us to think about each with critical insight (Gilroy 1993). Somalis employ a standpoint epistemology, situated in their navigation of the world as refugees. They recognize that autism stems from multiple conjunctural forces (environmental toxicity, shifts in bacteria, health and food industries, migration) which they may never fully unravel. But they generate theories of truth, and distinguish between real and false knowledge, by drawing from their own experiences and those of their compatriots. Somalis’ epistemologies of autism are informed by their diasporic positionality, their experiences misfitting into categorical and institutional landscapes in North America, and their straddling and not quite belonging in either East Africa or North America. They employ a fundamentally hybrid approach to healing: no single standard, category, or scientific method is sufficient for gaining truth. To complete the puzzle of autism, one must employ every tool necessary and combine behavioral and biomedical therapies with Quranic readings and prayers, and with diet changes and probiotics. All of these approaches are essential. This syncretic pluralism is one of the reasons why any one approach, be it allopathic or alternative, will never suffice in isolation.

Conclusion: Epistemic Articulation Star and Bowker suggest that categorical infrastructure gains power through naturalization (2000). As it becomes commonplace, its arbitrariness becomes invisible. Exclusion is part of this process; many people and practices “misfit” existing categorical systems, like psychiatric classifications or racial categories. Although everyone participates in more than one community of practice and has to contend with translation between them, some people are excluded from multiple categories and operate within a series of “borderlands” (Anzaldúa 1987). Misfits must employ invisible labor to manage this uncertainty and navigate the borderlands (Bowker and Star 2000: 303–­ 9). Misfitting necessitates epistemic work, the work of articulating the conjunctural hinges that hold systems of power in place. I suggest that the epistemologies Somalis form about autism illustrate this labor of articulation. They struggle to make sense of autism and to bring together all their experiences of traversing categorical and infrastructural systems of knowledge, welfare, health care, and social services as racialized, religious, and national

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others. This “work” of navigation, of articulation, between contradictory positionalities accumulates within their habituses, yielding them epistemic clarity, a means of analyzing the joints that interlock the multiple systems of differentiation they straddle (Collins 1986). The forging of epistemic communities helps Somalis to unite around a common etiology and ontology of illness, build solidarity, and forge social movements—­but it also allows them to forge meanings of autism that illuminate their own structural positionality. Their experiences of exclusion and of parenting children with autism adhere in their identities, leading to a unique approach to autism and embodiment of illness (Siebers 2008).9 Although Somalis also focus specifically on treating their children through individualized treatment programs, they also call into question the racial and national disparities they have faced. Chapters 4 through 6 in this book will illustrate how their unique epistemologies of autism inspire political and epistemic mobilizations. But Somalis’ theories of autism also serve as broader critiques of the interlocking systems of domination they navigate. Autism among Somalis in the diaspora operates as an anticase that re­­­ veals the racialization of autism (Bowker and Star 2000). Somalis are “out­­ siders within” (Collins 1991) the Somali community, the mainstream health and welfare systems, and AAM. Having children with autism sets Somalis apart from their compatriots. They must learn to successfully navigate the mainstream welfare, health care, and social services available to their families, which requires a particular performance to be legible to the state and an ability to straddle both the smaller ethnic enclaves in which many of them live, and the broader social service terrains of Toronto and Minneapolis. They believe they experience autism differently than do Americans and Canadians with autism. Such views defy the performances required of them by the state. And although AAM ontology fits with some of their experiences as migrants, they do not benefit from the privileged standpoint of others in the movement. Their ontology of autism incorporates their experiences of social exclusion—­something that sets them apart from AAM members. Somalis approach autism “otherwise” because they straddle and reconcile multiple positions of outsider status—­as parents of children with disabilities, as racial others, and as immigrants. While I do not wish to discount the marginality Somalis face on a daily basis, I do want to highlight their strategies for navigating the spaces opened up by their differential field positionings and the reflexivity they gain from their paradoxical belonging, which leads them to question the institutional and political-­economic structures that cause and treat illness (Brown et al. 2011).

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Somalis’ navigation of both mainstream and alternative systems of knowledge and care allows them to articulate a structural and conjunctural etiology of autism. Their explanations of autism, which bind together epi­ stemic communities in both locations, emerge out of their experiences of migration and racial exclusion in North America, and incorporate their own cultural ontologies of the body and risk. Their approaches to autism are “practical epistemologies” that reflect their biographical experiences and trajectories (Kroll-­Smith and Floyd 1997) and their unique social locations and ontological orientations. Somalis’ epistemic communities help them question existing power structures, mobilize for resources, and demand new avenues for research investment. Their postcolonial perspective inspires the production of new knowledge.

F OUR

Political and Epistemic Mobilization

As soon as the news came out in Minnesota, when they found out that a lot of Somalis have autistic kids. . . . Everybody, they came to the rescue. They paid attention and it resulted in better access to education, speech [therapy] and ABA. . . . Where is ours? Where is ours? We did a documentary with David Suzuki. Before that, we published an article in the Globe and Mail. Of all of that, not one Canadian stood up to try to help these poor, poor people who don’t know . . . what’s happening to their kids. Who don’t know how to help them (Adar Hassan interview, 12 June 2014).

In the quotation above, Adar explains that she and other Somali parents in Toronto drew attention to the high rate of autism in their communities but were ignored, while Somalis in Minneapolis were successful in mobilizing for resources, greater access to therapies, and better benefits. The epistemic communities in both Toronto and Minneapolis engaged directly with the media, worked with local advocacy organizations, and demanded attention and resources from the government. Yet the outcomes of their political mobilizations were very distinct. This chapter takes up this puzzle and explores how epistemic communities become a platform for political and epistemic mobilization. Thus far in the book, I have emphasized how common features of Somalis’ lives in the two national contexts have influenced their beliefs about autism and their forging of epistemic communities. There are many reasons for this congruence. First, Somalis were forced to flee Somalia after the outbreak of civil war, and they faced analogous experiences upon arrival in Canada and the United States. In both locations, Somalis’ cultural beliefs, experiences of migration, and racial exclusion figure prominently in their approaches to autism. Somalis in Toronto and Minneapolis hybridize healing approaches, syncretizing alternative, medical, spiritual, and behavioral therapies. In addition,

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they remain in close contact throughout the diaspora, and often move back and forth between Minneapolis and Toronto—­the two largest sites of Somali settlement in North America. Through transnational information networks, including telephone conferencing, they regularly communicate about various aspects of Somali life in the diaspora, including autism. In this chapter I compare the relationships Somalis formed with experts, as well as the different cultural and social landscapes in Toronto and Minneapolis, which greatly influenced the scope, content, trajectory, and outcomes of the two epistemic communities. Somalis in both locations face isolation and discrimination, more disabling forms of autism, and heightened surveillance of their health choices. Both communities have developed lasting relationships with experts in an effort to form social movements, but these mobilizations have had divergent political and epistemic impacts, ultimately shaping the dominant causal narrative each community forms about autism. I will explain how the epistemic communities in each location were forged and the struggles they have endured, highlighting the structural and cultural dynamics that led to their diverse outcomes. In Minneapolis, one group of Somali activists used accusations of racial bias to garner attention and resources from local public health experts, leading to collaborations on surveillance studies, as well as Somali involvement in the construction of a new benefit meant to overcome racial disparities in the existing landscapes of care. However, this close collaboration led to splits in the community, especially over the question of vaccine skepticism. One group of Somalis, who believe their autistic children were injured by vaccines, refused to participate with public health experts or the Somalis who collaborated with them. Therefore, although Somalis in Minneapolis gained attention and resources, the epistemic community is fragmented, conflicted, and distrustful. In Toronto, the Somali community is extremely tight-­knit and has forged very trusting relationships with experts exploring links between autism and gut bacteria. However, the Somalis in Toronto have not been successful at gaining attention for their vulnerability to autism from government officials or public health experts. This is at least in part because they confront diffuse processes of color-­blind racism,1 as opposed to specific instances of racial bias. At the end of this chapter I will review these dynamics and explain how each epistemic community came to be structured in dominance by one particular causal theory.

Minneapolis In the early 2000s, Somali parents began to notice that their children were overrepresented in early childhood special education programs in

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Minneapolis. Along with a motivated special education teacher, parents contacted Minnesota Department of Health (MDH) officials, who held a community forum and agreed to engage in administrative prevalence research focused on the Somali population (fieldnotes, 20 June 2014; Minnesota Department of Health 2009). In 2009, the MDH published a study revealing that Somali children in Minneapolis were two to seven times more likely to receive ASD special education services than were non-­Somali children (Minnesota Department of Health 2009). The parents also began organizing among themselves, and founded an organization called Parents United Against Autism (PUAA). According to several sources, Somali parents involved in these early mobilizations effectively used accusations of racial disparity and racial discrimination to capture the attention of local leaders (fieldnotes, 20 June 2014). The parents were extremely active, conducting interviews with media, writing blogs, and meeting with government officials, educators, health providers, public health officials, and researchers. This eventually led to an Autism and Developmental Disabilities Monitoring (ADDM) surveillance study, conducted from 2011 to 2012 in the Twin Cities.2 This study confirmed a high prevalence rate of ASD in the Somali population (University of Minnesota 2013). Many Somali parents and professionals were actively involved as researchers in the study, and others became involved as cultural liaisons with the MDH and UM. Collaborations between the Somali community and local public health experts did not end with the CDC study. Somali parents remained active in advocating for the new Autism Benefit, which was rolled out in Minnesota in 2016. Somali professionals and parents meet monthly at a Somali Public Health Advisors group, which directly advises the Minnesota Department of Health on issues in the community. A Somali mother in Minneapolis sat on the federal Interagency Autism Coordinating Committee (IACC) from 2012 to 2014 (fieldnotes, 13 June 2013), and other research collaborations and publications have resulted from relationships that began with the CDC study. In fact, the CDC declared Hennepin and Ramsey counties, where Minneapolis and St. Paul are situated, official federal ADDM sites starting in January 2015. These counties were part of the CDC 2014 and 2016 cycles (fieldnotes, 9 September 2015).3 There are many Somali professionals involved in policy and advocacy, working in the schools and clinics, as well as local businesses and government. Many are employed in the MDH, the Minnesota Department of Human Services (MDHS) and the Minnesota Department of Education. Somali professionals are much more visible in Minneapolis than they are in Toronto. Because of the heightened attention to autism as a particularly

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significant problem affecting Somalis in Minneapolis–­St. Paul, an entire industry has developed around autism, which is also a source of employment for local Somalis. Somalis are employed as medical interpreters, personal care attendants (PCAs), public health specialists, community liaisons, ambassadors, and delegates to bridge divides between the worlds of policy and advocacy and the Somali community. The public has responded very actively to autism in the Somali community of Minneapolis, which is a far cry from the reality on the ground in Toronto. In fact, because of this attention, it was initially difficult for me to gain access to the community and convince local researchers and potential interviewees that I could contribute something new. Some people were unimpressed with my interests and failed to see the relevance of yet another research project, especially a qualitative one.4 It took time and work to convince people in Minneapolis that I was serious about this project and could contribute something to existing knowledge. In the end, I was able to conduct ethnographic research from 2013 to 2016 with Somali parents of children with autism in Minneapolis and to develop an understanding of the contemporary contours of existing epistemic communities. But very few of the early Somali parent pioneers were still involved or interested in being part of a research project. Therefore, my analysis of the history and transformation of the parents’ movement came from people who worked with the Somali community, and not from interviews with the founders of the movement.5 There are several reasons why Somalis were so integrated into public health organizing around autism in Minneapolis, which was not the case in Toronto. One major reason is vaccine compliance. MMR coverage rates among Somalis in Hennepin county fell from 90 percent in 2004 to just under 42 percent in 2017 (MDH 2017; Gahr et al. 2014), and there were two measles outbreaks in 2011 and 2017 in the Somali community. After the 2009 study was published confirming that Somalis were overrepresented in early childhood education programs, several parents began meeting and vaccines arose as a possible causal factor in those conversations (fieldnotes, 23 October 2015). These parents reached out to key national leaders in vaccine skepticism, such as David Kirby and Andrew Wakefield (Patti Carroll interview, 14 November 2015).6 The declining rates of MMR coverage, as well as a series of meetings between well-­known vaccine skeptics and the Somali community, scared Minneapolis public health advocates, who immediately became involved in local educational campaigns about vaccinations, for which they employ Somali interpreters and health advocates. I will return to the topic of vaccine beliefs in chapter 5, but it is important to

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note here that concerns about vaccine coverage were a primary motivating factor for the active involvement of the Department of Health in the Somali community. Other key factors include the racial dynamics of the Twin Cities, racial disparities in autism services, and a group of extremely savvy Somali activists who mobilized around race and class barriers. As I explained in chapter 2, the first system put in place for parents to publicly access behavioral therapies in the Twin Cities, CTSS, included an administrative two-­tier bias that kept poorer families from accessing therapies. In addition, school districts in the Twin Cities have been nationally repudiated for racist educational outcomes and for concentrating racially marginalized youth in the most restrictive disability settings. Somalis drew attention to these issues and effectively mobilized around racial bias to garner attention and then resources. According to one anonymous source, the Somali parents in Minneapolis captured the federal government’s attention because they “called people racist and shamed the CDC into the study” (fieldnotes, 20 June 2014). As I discussed in chapter 1, Somalis often distinguish themselves from Black Americans and deny their own experiences with racial discrimination. And yet, a small group of educated and assertive Somalis in Minnesota successfully drew on the long history of Black racial consciousness in the United States to strategically transform existing structural dynamics in Minneapolis. Public health experts in the Twin Cities were receptive to these charges. Leaders in autism advocacy, research, and policy in the United States are keenly aware that the racial dynamics of autism are sorely underexplored and unknown.7 The MDH has been nationally heralded for recognizing race as a primary factor in the social determinants of health (MDH 2014a). In addition, as the interviews I quoted in chapter 2 reveal, administrators of school districts in the Twin Cities are aware of racial biases in special education, and liaise directly with Somali communities. Public health and education professionals in Minneapolis have worked hard to respond to demands from the Somali community and to address existing racial and class disparities. In addition, the Twin Cities is a small urban area, and Somalis are a conspicuous population. Minnesota prides itself on being a haven for refugee resettlement. Minneapolis government officials were invested in sustaining this reputation through partnerships with the Somali community, one of the city’s largest, newest, and most visible immigrant communities. There is one final dynamic that contributed to Somali parents’ success in attracting state and federal resources. Most of the Somali parents and professionals who were involved in early mobilizations were fluent in English, educated, and middle-­class. A number of initiatives were also launched to

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engage and train Somali professionals. The University of Minnesota, MDH, and MDHS sought out Somalis who had already earned advanced degrees in social work, public health, nursing, and public policy. Somali professionals were recruited from around the country and brought to Minnesota for work. But there were also local opportunities for young Somalis to earn degrees while conducting research or outreach. This has ensured that a small group of Somali parents and professionals remains implicated in local politics and service provision in Minnesota. Somalis’ successful strategy of asserting racial bias in order to garner resources and attention to autism in their communities was made possible by the conjuncture of all of these factors. The early and inclusive response of local public health officials, researchers, and policy specialists in the Twin Cities has profoundly shaped the Somali epistemic community there. But alongside the positive impacts on the community and the improvement of autism provision within the state, there have been a series of more complicated outcomes. The group of Somali parents who work closely with local public health experts on vaccine education, the new Autism Benefit, and epidemiological research initiatives made a strategic decision to collaborate with local experts for two reasons: (1) to gain proof that there is a high rate of autism in the Somali community, and (2) to gain access to early intensive behavioral therapies. These early Somali activists were strategic in using racial bias as a mechanism for pursuing research and advocacy that both confirmed Somalis’ beliefs about their greater vulnerability to autism and gave them access to services they believed might ameliorate the intensity of their children’s symptoms. However, such a collaboration meant turning away from research into the causes of autism, and accepting the scientific consensus that vaccines are not a causal determinant of autism. Other members of the Somali community refused to renounce their strong beliefs about vaccine injury, and sought out research collaborations on environmental insults. As a result, the Somali community in the Twin Cities is now quite divided along these lines. First, there was conflict over which kind of research the Somali community supported. A particularly poignant instance of this conflict took place in response to research by Mary Catherine de Soto, a professor of psychology from the University of Northern Iowa. De Soto met with the Somali community in 2010 to begin research on vaccine exposure, environmental insults, and the biomedical causes of autism (Crann 2011). She received Institutional Review Board (IRB) clearance and began collecting blood and hair samples and conducting behavior assessments with autistic Somali children and interviews with Somali parents (service provider interview, 6 November 2015).8 De Soto collected blood samples to test mercury and

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vitamin D levels and look for genetic biomarkers. According to parents and therapists involved with the project, the researchers running the CDC study, which was also taking place at that time, told Somalis that they should only participate in one research project. Because they would be paid for participating in the CDC study, they were told to choose it over de Soto’s study (interview, 6 November 2015). Several Somalis involved then withdrew from de Soto’s study. She was unable to proceed, and she now refuses to comment on the ordeal. Many public health advocates and researchers I met with in Minneapolis told me about de Soto’s study and how discredited they believed it to be (fieldnotes, 13 June 2013; 23 October 2015). However, many Somalis I interviewed were annoyed that surveillance studies were the only research being conducted and craved more studies on autism’s possible environmental determinants. The hiring of Somalis to educate other Somalis on vaccine safety has also caused tremendous divisions. In fact, the local Somali parent association (PUAA) split over the issue. In 2010 and 2011, several parents left PUAA to form the Somali American Autism Foundation (SAAF), which has taken a staunchly provaccine stance and has collaborated on a number of research initiatives including the CDC prevalence study (interviews, 31 October and 3 November 2015; fieldnotes, 13 June 2013). I believe these Somali parents made strategic decisions to join forces with local government to have a voice in advocacy and research. But parents who remain committed to environmental research and vaccine skepticism are suspicious of the Somali leaders whom they perceive as having “changed sides.” Many parents told me that the Somalis who now work for the MDH and the MDHS still believe that vaccinations cause autism but remain silent on that point in order to gain resources and a voice in government decision making (Abdirisak Jama interview, 1 November 2015). Some Somalis view vaccine education efforts by local public health experts as not only pedantic, but racist and assimilationist. I argue in the next chapter that this expert involvement contributes to some Somalis’ deep-­seated distrust of the American medical system. These fissures in the community over vaccines have caused tensions within the parent support group. In 2010, the PUAA started a support group for Somali parents of children with autism, but it eventually disbanded due to infighting (Ibado Arte interview, 3 November 2015). Mariam Egal, a Somali public health professional who works for the MDHS, served as interpreter and researcher for a qualitative study on the experiences of Somali, Hmong, and Latinx families with autism in Minneapolis (MDH 2014b). Through this study she met many Somali parents of children with autism, and she decided to start a new support group in 2014 (interview,

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31 October 2015). Many members of the original PUAA support group returned. Approximately forty parents, both men and women, meet monthly. Mariam brought in experts from county services, the school district, and the mosques, and she invited nutritionists, ABA providers, and members of the alternative autism movement. Mariam received a small sum of money from the University of Minnesota to provide food at the monthly meetings. But the community became suspicious of Mariam and thought she was making money off the group, which was perceived as especially galling since she does not have a child with autism (Jama Duale interview, 7 November 2015). Though these rumors were unfounded, Mariam felt the support group had turned on her, so she let the parents take over. I interviewed fourteen members of the support group in Minneapolis in 2015, and I found that the support group was a tremendous resource to them. One parent I interviewed had only recently joined, and she spoke of how little she had known of both mainstream and alternative therapies she could access until she joined the support group. She said that other parents had not only been essential in explaining her rights and how to access treatments, but had actually opened doors for her—­calling their contacts, getting her on wait lists, and going with her to meetings (24 October 2015). Many members of the support group had been involved in autism advocacy for years, and had children who were nearing adulthood. Others had extremely young children and had just joined the group. On the whole I found the members to be well informed; they accessed both mainstream and alternative services and therapies, and were sophisticated in their beliefs about autism. While most of the support group members I interviewed believed vaccines were somehow involved in causing their children’s autism, not everyone in the group held that view. Most were accessing some form of alternative therapy, and many had visited AAM doctors and attended Autism One. Most also believed that there were environmental factors involved in causing autism. However, there was less coherence in the epistemology espoused by the group than in what emerged in Toronto. The epistemic community of Minneapolis is more fragmented and less coherent than the one in Toronto because parents were more successful in garnering resources and attention from local research, policy, and advocacy allies. Having an impact on the policy domain and getting involved in federally funded research served to fragment the community, even as it also highlighted important racial and national disparities in autism care and support. However, community divisiveness did not undermine the power of the epistemic community in forging solidarity and sharing knowledge.

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This became clear when I conducted interviews with people who were outside the epistemic community. In Minneapolis, I considered people who regularly attended the support group, as well as parents affiliated with either PUAA or SAAF in the early years of organizing, to be members of an epi­ stemic community. However, I also recruited outside those settings. Amira Ahmed, who served as my research assistant and interpreter, helped me recruit parents of children with autism, through Somali PCAs working with families who had children with autism. I recruited eleven parents this way. Amira also organized two focus group discussions (FGDs) with parents (n = 14). Although these numbers are small and it is difficult to generalize on their basis, some very interesting dynamics emerged in the interviews and FGDs with Somali parents outside the epistemic communities. In January 2015 Amira set up two small FGDs with parents who were recruited by a PCA agency. The parents who attended were receiving services for autism and were told they could participate in a FGD on autism if interested.9 And yet, during the FGD, none of the parents admitted having a child with autism, and they only spoke of autism obliquely. I nonetheless received permission from five parents to conduct follow-­up interviews. In all five, the parents insisted they did not have a child with autism (“. . . in sha allah,” they always responded). I asked them why they had attended the FGD, and they gave vague answers. One woman told me she was fearful that her son was autistic, but that she had had him tested and the result was negative (fieldnotes, 10 September 2015). Another man told me he worked with families who had children with autism, and that he had come to provide information to other families (fieldnotes, 14 September 2015). I could never tell whether these parents were simply too frightened to discuss their experiences with autism, or had been recruited erroneously. Another time, a PCA scheduled a series of interviews for me with families whose PCAs she had told about my research. The first mother had a child with paralysis, but not autism; the second child suffered from hemophilia, but not autism; and the third child had Down syndrome, but not autism. When I refused to interview these parents, the PCA who had done the recruiting was exasperated and implied that I was being too picky by insisting that I would only interview parents of autistic children, even though those were her directions for recruitment. It turned out that there was quite a bit of confusion among the PCAs about what autism is. One PCA said, “But this child does not speak!” When I explained that not speaking is not a symptom unique to autism, and that many children with autism do speak, the PCA looked at me incredulously. These experiences allowed me to glimpse something I had been unable to grasp in Toronto: the unequivocal fear and

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confusion that has engulfed Somali communities who are contending with an illness they neither know nor understand but to which have heard they are susceptible. This fear is palpable and extensive. The actual interviews I did in Minneapolis with parents outside the epi­ stemic community who had children with autism and were willing to speak about it revealed other interesting dynamics. As discussed in chapter 2, I found that parents outside the epistemic community in Minneapolis were poorly informed about the services available to their children. Most were receiving PCA services and were collecting SSI payments, but this was the extent of the support they knew about and received. None had even heard of ABA or knew they were eligible for it free of charge. It was obvious that many parents were not receiving essential information about existing services. There are several reasons for this, which I have explained in chapter 2. PCA agencies were discouraging parents from seeking ABA services because they feared it would disrupt their business. Somalis generally learn through the schools that their children have autism, and education specialists are least likely to refer to behavioral therapies. Somalis are familiar with welfare agencies and county services because they are reliant on them for financial support, but they are unfamiliar with health and mental health services. These interviews revealed to me just how deep the schism is between those within the epistemic community and those outside it. Outside the support group, profound fear, anguish, and misinformation about autism proliferates. In sum, the epistemic community in Minneapolis was shaped by engagements with local public health experts. One group of Somalis strategically employed accusations of racial disparities to garner first attention to their vulnerability to autism, and then investment in services that might resolve racial and class bias in existing landscapes of care. To do so, however, these parents abandoned research into causality and became vaccine compliant. Other parents felt indignant and closely scrutinized by public health experts over the question of vaccine safety, and that contributed to their ongoing resistance to mandatory vaccinations. As a result, the epistemic community in Minneapolis is conflicted, fragmented, and distrustful.

Toronto The Somali community in Toronto forged a tight-­knit epistemic community more quickly than did their counterparts in Minneapolis. Adar Hassan and Idman Roble first met in 2002 when their children with autism were attending the same summer camp (FGD, 5 June 2014; interview, 8 November

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2014). Adar had already been using some biomedical therapies (vitamin supplements), but it was not until the two met that they joined efforts and pursued alternative therapies together. Idman met Fatima Kediye, an early childhood specialist, in 2001 when Fatima was still a graduate student and was working for a local agency doing home visits of families with autistic children (Fatima interview, 10 June 2015). Fatima said that in 2003 her caseload increased steadily. She, Idman, and Adar have engaged in years of research together. They attend conferences, speak to parents through online forums, and have consulted an array of medical journals. Fatima, Idman, and Adar began a support group for parents of children with autism in 2004, and thirty mothers regularly attend (FGD, 5 June 2014; interview, 15 May 2015). As explained in the previous chapter, it was in 2005 that Idman, Adar, and Abdullahi began annually attending Autism One (Adar interview, 8 November 2014). Each year, they bring back information from the conference to share with the support group. Other support group members also regularly impart their experiences with alternative therapies, and many of them see the same AAM doctors. Some of those doctors practice on the outskirts of Toronto, but often the mothers drive hundreds of miles to visit alternative doctors they have researched. Nonetheless, not everyone in the group uses alternative therapies for their children. Idman and Adar believe the holdouts are skeptical because Idman’s and Adar’s children have not recovered from autism despite their great investment in therapies (interview, 15 May 2015). Members who do not use biomedical therapies still benefit from the group and hold many of the same beliefs about autism as those who use alternative therapies. Here is a discussion on the importance of the support group to those who attend (FGD, 5 June 2014): woman 1: With me, everything was different. . . . When I met this group . . . I think it was mostly for me like emotional support. And a lot of information. . . . For example, the hyperbaric oxygen is something that we talked about. . . . It was very emotional for me [when I first starting attending]. . . . Usually, when I see people who don’t have any information about autism, I call them or I send them to the group. And I’ve been involved since the beginning. . . . woman 2: Yeah, just being here, and once a month meeting, and everybody talk about this problem or what they had . . . it’s a lot for us. adar: Yeah, you feel like you’re not alone, you know? . . . Everybody is sharing with you the same issue that you have, so you feel like you’re home. We can’t miss even one single month. . . . woman 2: Yeah, we come here and we know we are family.

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When any member of the support group sees another Somali child with autism, she approaches the mother and tells her about the support group, encouraging her to attend because it is so important to learn about services early. Therefore, the support group is also a means of ensuring that Somali families get the information they need to navigate the complicated landscape of care in Toronto (FGD, 5 June 2014). To a degree, the support group replaces the extended families people relied on in Somalia. In all the meetings I attended, it was obvious that the support group members care deeply for one another. Interviews I conducted with parents involved in the support group (n = 16) were regularly interrupted with calls from other support group members asking for help or guidance. Fatima, who holds two advanced degrees, also reads medical journals and shares what she has learned with the group. She collects in a binder all the information she has found most relevant to understanding the Somali experience of autism. The binder is filled with news articles and medical reports on causal factors for autism, as well as information on local service agencies and statistics on Somali immigration in Canada. The bulk of the causal data reports on environmental exposures, as well as research on gut bacteria and shifts in the microbiome. Fatima shares relevant articles with support group members when that topic emerges in discussions. Fatima is one of the group’s intellectual leaders, and her research on causality is important for understanding the overwhelming consensus in the group that autism is caused by environmental injury. Members of the Toronto support group have a more diverse class background than those in Minneapolis. Some of the leaders, like Idman and Fatima, are from higher-­class backgrounds in Somalia and have advanced degrees, but other members are from working-­class backgrounds. Even those with advanced degrees live in high-­rise complexes in ethnic enclaves. The financial insecurity of this group was striking in comparison to the lives of some of the more affluent Minneapolis-­based Somalis. This may be because of the legislative limbo in which Somalis were placed in Canada for a number of years after migrating, as I have explained in chapter 1. The Toronto support group has been meeting regularly for a long time, and it brings together a group of mothers who share similar etiologies, ontologies, and treatment protocols for autism. The theories of those who attend are very similar; there is more conformity than in the Minneapolis support group. After attending several sessions of the Toronto group, I realized that its leaders sometimes discipline other members. Consider this exchange (4 June 2015):

Political and Epistemic Mobilization  /  145 asha: What is the sole problem of the behavior? Behavior came from brain! . . .  adar: The brain is connected to the gut. The gut. Anonymous: The stomach. When you’re healing the stomach, the brain will go away. Cause their brain is good. asha: Everything come from the brain. Everything came from there. anonymous: But that is a story that is different! adar: Asha! If you take autism kids . . . [for an] MRI or CT scan or anything, you cannot see anything. . . . There’s no, you know, tumor or, [anything]. claire: You mean when you scan the brain, it doesn’t look like anything’s wrong with it? There are no visible markers? adar: Nothing. Nothing. Parkinson’s disease patient, when you examine their brain, their brain has a hole in it. If you examine MS patient . . . there’s nothing protecting their brain and they’re firing all over the place. Autistic kids, they don’t have that. So their issue is coming here [pointing to her gut] and going there [pointing to her brain].

Here the parents in Toronto are discussing the root cause of autistic behavior: whether it is rooted in brain dysfunction that makes children with autism fundamentally different from neurotypical children, or whether it is rooted in the body, and the gut in particular, but causing symptoms in the brain. Support group members discipline Asha, telling her that she is wrong to think autistic behaviors stem from the brain. This is because Asha’s assumption defies the alternative theory that autism is caused by a series of failures in the metabolic, gut, and immune systems. My presence may have been the cause of this disciplinary conduct. The leaders of the group may have wanted me to hear a coherent story as part of my research. Fatima once asked me whether a mother I interviewed had told me that her son had been diagnosed with autism in Kenya, as opposed to Canada. I refused to answer, but Fatima wanted to rewrite this parent’s response, because being diagnosed in Kenya defies Fatima’s theory of cause. Support group members did disagree with one another, and this was obvious in the interviews I did. As such, the support group was likely a lively space to debate certain theories and experiences. The relative strength and coherence of the epistemic community that emerged out of the support group in Toronto did not, however, help the group in mobilizing for resources from the government. Support group members tried many of the same tactics as the parents in Minneapolis had, but they were much less successful. As Adar explains in the quote that opens this chapter, Somalis in Toronto made a film with David Suzuki called The

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Autism Enigma (Sumpton and Gruner 2012), which aired on major media outlets throughout Canada. Adar was also featured in a Globe and Mail newspaper article (Jiménez 2009). And members of the support group have met with numerous officials from the Ministries of Health, Children and Youth, and Education to highlight their vulnerability to autism and their struggles accessing services for their children. Their efforts have largely been ignored. Idman and Adar blame the “multicultural” racial politics of Canada, which render race an ineffectual category for political mobilization. In July 2015, Adar, Idman, Fatima and I scheduled a meeting to discuss a grant for which they wanted to apply. Idman was too distracted. She had just been in touch with Somali parents in the Minneapolis support group who were celebrating a breakthrough in achieving their Autism Benefit. Because the support group in Toronto had failed to attract any government attention or funding, Idman was exasperated at the success of Somalis in Minnesota. I asked her what she thought accounted for this discrepancy, and she immediately began speaking of Canada’s racial policies. She said that when people are accused of being racist in Canada, they back away instead of stepping up. People try so hard to avoid conversations about race, she said, that they make racism worse. Idman explained that when she and Adar discuss the high rate of autism in the Somali community with government officials, they are told, “We cannot look into this without any proof of what you are saying.” But Idman asks, “How are we to get proof if no one is willing to help us?” (fieldnotes, 13 June 2015) Fatima told me that they reached out to Autism Ontario—­one of the largest autism advocacy organizations in the province, which supposedly represents all parents with autism—­to discuss how the agency could be more involved with immigrant communities. Autism Ontario was uninterested (interview, 11 July 2015). And in fact, I did interviews with members of Autism Ontario and asked them if their membership was diverse. The leadership admitted that the majority of the parents involved were white and middle-­class (fieldnotes, 2 July 2015). When I tried to contact the head of the organization, I was told that she knew very little about the Somali population. But this was not for lack of effort on the part of Idman, Adar, and Fatima. This was not the only experience the support group had in being directly ignored by agencies that are supposed to represent all parents of children with autism. A national needs assessment, based on nationally representative data collected through the Canadian Autism Spectrum Disorder Alliance (CASDA) was conducted in Canada to evaluate problems with existing autism services. The survey very clearly did not address the needs or views of Canadians from immigrant, nonwhite, or even impoverished backgrounds.

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Eighty-­four percent of the caregivers surveyed were white, and 86 percent had university degrees; only 2.1 percent of the sample is identified as Black or African Canadian (CASDA 2014). Fatima told me she had tried to contact the organization running the survey when they began collecting data, to make sure that immigrant communities were surveyed (personal communication, 13 June 2015). Her pleas were ignored. The Somali community directly contacted both Autism Ontario and CASDA to ask to be included in their research and advocacy—­only to be summarily dismissed or discounted. I asked Somali parents in Toronto what role being a “visible minority” played in their experiences with autism. Adar responded, “You are invisible. You don’t exist. . . . You’re already [a] minority and then you have a controversial disease, that nobody wants to take action, nobody wants to discuss, or nobody wants to acknowledge, so you become the bottom. No . . . we’re invisible. Nobody knows us” (FGD, Toronto, 5 June 2014). According to Adar, being a visible minority in Canada has meant that she cannot get the resources and attention her child with autism requires. Being racially marginalized renders her and her sons invisible to the system, making their autism illegible to the existing systems of care. adar: The barriers, you know. Everywhere, there’s barriers everywhere. But it’s obvious, you know, what’s going on. So that day, I told the Minister of Youth and Children Service, you know, I told her. This is the forgotten part of our community. The forgotten children. You know, nobody cares about, no community cares about them, no government cares about them (FGD, Toronto, 4 June 2015).

According to members of the support group, Canada’s racial system makes it impossible for Somalis to claim they are victims of racial discrimination and disparities. They are rendered voiceless because they are not “seen” as racialized subjects, even if they are targeted as such by systems of inequality. As Barni so eloquently puts it: “If you are a visible minority, you’re gonna be a invisible minority cuz nobody’s gonna look at you and nobody’s gonna see you. Nobody knows what’s happening, and then, if you don’t have money, you can’t—­a lot of the things are money” (interview, 11 June 2014). Adar and Idman have found that naming the racism they face does not work. Adar explains, “The government ignores us completely. We don’t exist in their face. Our kids don’t exist at all. It’s like they’re forgotten. We aren’t even from the planet or something like that. Nobody knows us” (interview, 15 May 2015). It is difficult to unpack the reasons why Somalis have been less successful in gaining the attention of the government and local public health

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agencies in Toronto. Other Somalis have successfully lobbied for political recognition. For example, as I explained in chapter 1, Somalis filed a Charter challenge in 2000 to oppose and eventually overthrow the discriminatory immigration legislation against Somalis. A group of Somali women sued the Toronto Housing Authority in 1991 because refugee claimants were initially banned from subsidized housing (OCASI 2016: 5). And in 2012, Somali families demanded that the Toronto District School Board establish a task force dedicated to analyzing discriminatory education policies and outcomes for Somali children. In addition, Somalis are recognized among health and service providers in Toronto. Idman and Adar are listed as point people in the Somali community for several local mainstream autism service agencies. When I first met with the two largest autism service agencies in Toronto, I asked what would happen if a Somali person came in to receive information and services at their agency. The social worker in charge of intake pulled out the information for their local contact in the Somali community, and for both organizations, the names were Idman Roble and Adar Hassan (fieldnotes, 9 and 11 June 2014). In addition, when I was trying to get an interview with the Toronto Public School Board, I was told they could put me in touch with their own contact in the Somali community, Adar Hassan. Idman and Adar are the contacts for so many service agencies because they run their own support group and are open about having children with autism. Therefore, even though they have been less successful in garnering public attention and resources, they have been effective in promoting their support group as an important resource for parents in the Somali community. There are a few reasons why Somali parents in Toronto have been less successful in raising awareness about the high rate of autism in their communities. First and quite simply, Toronto is a major metropolitan area that is exceedingly diverse. Somalis are much less visible as a population there than they are in Minneapolis. Second, even though Somalis in Toronto are also vaccine skeptic, there have been no measles outbreaks concentrated in the Somali enclaves, so they are not seen as a threat to herd immunity.10 The support group is often used to teach parents how to claim religious exemptions from mandatory school vaccinations (FGD, 4 November 2014), so it is interesting that service agencies regularly refer people to the group. The health surveillance of Somali Canadians’ vaccine practices has been far less disciplinary and targeted than the campaigns waged in Minneapolis, despite the fact that nonmedical vaccine exemptions have increased steadily since 2007 in Toronto (Pelley 2019).

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Josh Gamson suggests that social movement struggles that are biopolitical in nature, and which target generalized and decentralized processes of “normalization,” are often contradictory and aimless (1989). Similarly, Somalis in Toronto have had a difficult time proving they are the target of color-­ blind racism because the platform of “multiculturalism” is diffuse and decentralized, operating as a state response that is also enacted by and through service agencies and advocacy organizations. Canadian government officials and service agency administrators refuse to recognize Somalis’ particular and exceptional experiences with autism—­that they are acutely vulnerable, and suffer from more disabling forms of autism. Somalis advocated for a surveillance study focused on their community. However, Canada only recently began collecting surveillance data, the first of which was published in 2018 (Ofner et al. 2018). And Canada does not collect data on race or country of origin, in part because the federal policy on multiculturalism does not recognize race as a category of difference. In addition, Somalis’ complaints of racial bias were less easy to prove. Support group members believe they face bias in accessing and remaining in the IBI program, as I have discussed in chapter 2. However, most children of support group members had participated in the program, even if they were eventually dismissed for lack of progress. Somalis in Canada have been less successful in mobilizing around racial bias than Somalis in Minneapolis. This is in part because Somalis in Minneapolis were able to target particular health policies and programs in schools, whereas Somalis in Toronto confront a diffuse process of color-­blind racism. Because the Toronto Somali community was not incorporated into local policy and research efforts, its members were not asked to abandon their alternative views. As such, the research efforts they joined focused on how shifts in the diversity of gut bacteria might contribute to autism risk. Somali parents engaged in research collaborations with neuroscientist Derrick MacFabe and microbiologist Emma Allen-­Vercoe. These two scientists regularly attend support group sessions, share their work, and listen to the parents’ stories. MacFabe and Allen-­Vercoe were intrigued by the Somali story, because it aligned with research they were pursuing on gut bacteria. Thirty mothers from the support group collected fecal samples from their children who had autism and gut problems. Vercoe and MacFabe compared the samples from the autistic children with samples from nonautistic family members living in the same household. They discovered that gut microbiota is altered in children with ASD (Toh 2015). This research collaboration is the subject of chapter 6. Though the epistemic community in Toronto had less success influencing local service provision and policy than the one in Minneapolis, the community

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is united and its members’ epistemic views are much more coherent. Support group members have also managed to guide the kind of research initiatives they are involved in, which support their experiences and beliefs about autism. Perhaps being ignored by the government has forced the Toronto support group to unite around a strong narrative about the etiology and ontology of autism and an alternative therapeutic approach to it, but their failure to gain public attention has also yielded a kind of freedom that the Minneapolis group has not experienced. The support group’s reception of me, as a researcher, was quite different from my initially chilly reception in Minneapolis. After a preliminary vetting in 2013, the Somali community in Toronto welcomed me with open arms, inviting me to observe the meetings of its support group and carry out extensive ethnographic research and interviews with its members, who gave me references for service providers and activists. The members basically did everything in their power to open access for me. I was intimately involved in the community, and as a result my ethnographic data from Toronto is much more extensive than my data from Minneapolis. I suspect that one reason for this differential treatment was that the Toronto community was desperately trying to attract attention to its plight—­something the leaders of the Minneapolis community felt they no longer needed. In Toronto I consider the members of the support group the key actors in the tight-­knit Somali epistemic community. However, because of the strength of those social bonds and the coherence of the narrative about autism etiology and ontology within the group, I also recruited Somali parents outside it. I gained permission to recruit through a large autism service provider in the Toronto region.11 This organization sent letters on my behalf, informing Somali parents enrolled in or waiting for ABA services of my study, and indicating that they should contact me if they were interested in participating.12 I recruited ten parents in this way. In Toronto the sample of respondents outside the support group is more biased than in Minneapolis because of the means of recruitment. The parents recruited through the service agency had already received diagnoses for their children, were accessing resources for them, and had contacted me for interviews because of their interest in the topic. Most of these parents were highly educated and self-­motivated. Their beliefs about etiology, ontology, and treatment were also similar to those of support group members, except that two parents recruited through the agency did not believe vaccines were a causal determinant of autism. The service agency informed me that a parent had called them to complain about receiving the letter about my research. This parent explained that their child did not have autism, but

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simply had a language delay (fieldnotes, 9 July 2015). And yet all of the parents who received the letter had children receiving ABA services because they were deemed eligible via autism diagnoses. Anxieties like these could have kept other parents from contacting me for interviews. As in Minneapolis, when parents agreed to participate in interviews or group discussions and then refused to talk about autism, there were also parents in Toronto who were afraid to admit publicly that they had children with autism.

Conclusion For Bourdieu, heterodoxy is only possible when the “dominated have the material and symbolic means of rejecting the definition of the real that is imposed on them” (1977: 169). Epistemic communities are a means by which groups become capable of mounting a heterodox response within a contentious field of autism because they allow for not only the consolidation of beliefs, situated in biographical experience and social location, but also the accrual of material and symbolic resources necessary to challenge “authorized” scientific discourse. This chapter has focused on the political mobilizations the epistemic communities in Toronto and Minneapolis mounted, and has analyzed the reasons for the diverse outcomes in each locale. Brown and his colleagues have noted that successful health movement organizing around race and class disparities requires that populations trace the causes of their illnesses to the “institutional and political-­economy structures that can cause disease” (Brown et al. 2011: 16). This was more possible in Minneapolis than in Toronto because a small group of powerful Somali parents was able to target schools and therapeutic policies for racial bias, and to demand a surveillance study to prove their exceptional experiences with autism. In Toronto, Somalis were not as successful in targeting particular programs or policies, and were unable to get buy-­in for a surveillance study focused on their community. Support group leaders in Toronto explained that Canada’s platform of multiculturalism makes mobilizing around race less feasible, and I would argue that this is true at least partially because it is much more difficult to mobilize against a diffuse process than against a particular policy. In both locations, the relationships Somalis forged with local experts shaped the trajectory of the epistemic community and the dominant narrative they adopted. Somewhat unexpectedly, success in Minneapolis actually led to greater conflict in the community, a less coherent epistemic movement, and widespread distrust. In Toronto, lack of

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government involvement allowed the Somali epistemic community to remain focused, coherent, and trusting of relationships with researchers and scientists. It also allowed them to pursue research informed by their beliefs about environmental causation. Both epistemic communities have shifted the site of knowledge production by insisting that the Somali case is intrinsic to our broader understanding of autism etiology and treatment. According to Mary Douglas, “symbolism of the body’s boundaries is used . . . to express danger to community boundaries” (2000: 124). Therefore, understanding corporeal symbolization is crucial for unpacking community dynamics and a relationship to broader society. In Minneapolis, vaccines have become the major focal point of autism politics. Vaccine injury is the theory of cause that structures the Minneapolis epistemic community in dominance. The body associated with vaccine injury is tightly bounded, and a secret impurity from an external agent is the cause of social disorder. In chapter 5, I will take up this particular theory of harm and how it operates and circulates in Minneapolis. I argue that distrust in the medical establishment, based on knowledge of historic practices of medical apartheid and current relationships with doctors, is fundamental for unpacking Somali beliefs about vaccine injury. The involvement of public health experts in the Somali community ironically fuels this distrust, at least for certain members of the community. Diverging from Douglas’s theories of grid and group (1982), however, Somalis in Minneapolis are not a tight-­ knit group with clear boundaries; they are extremely conflicted and incoherent. As I will explain in chapter 6, Somalis in Toronto mobilize around gut bacteria research. The body associated with gut bacteria is porous at its boundaries; it is situated in a field of insults, open to shifts and changes in the environment. Risk is invisible and diffuse, as is the enemy for social movement organizing. However, the Somali community in Toronto is extremely coherent and well bounded, with a very strong narrative of cause. So for each community, the theory of the body they endorse helps to describe the enemy against which they mobilize, but does not reflect their own community integration and boundaries. Rather, the community dynamics are better explained by Somalis’ relationships to the experts with whom they work. Because the experts in Minneapolis attempt to convince Somalis that their beliefs are incorrect, they are not trusted partners. Experts in Toronto have not tried to change peoples’ minds, but have joined the community in a more collaborative fashion, so that the Toronto community is more trusting and coherent. I will explicate these dynamics in the next two chapters.

FIVE

Vaccine Skepticism and the Accumulation of Distrust

Concerns about a possible link between vaccination and autism are very common in the Somali community in Minneapolis. The apprehension is focused specifically on the measles, mumps, and rubella (MMR) vaccine, which is referred to as the “eighteen-­month shot” or the “fifteen-­month shot.” In 2011 and again in 2017, Minneapolis experienced measles outbreaks concentrated in the Somali community. After the 2011 outbreak, the Minnesota Department of Health (MDH) conducted a county epidemiological report on MMR uptake, which found that the rate of MMR coverage in the Somali community had dropped from 90 percent in 2007 to 55 percent in 2011 and then 30 percent in 2013 (fieldnotes, 13 June 2013; MDH 2013; Bahta and Ashkir 2015). A similar study was conducted after the outbreak in 2017, which found that only 42 percent of Somalis had been immunized with the MMR (MDH 2017). Clearly, the stakes of Somalis’ skepticism about the MMR are high, given the resurgence of infectious measles within the population. And yet, Somalis’ vaccine beliefs and practices are misrepresented and misunderstood by public health professionals and the media.1 I found that there are two very different formulations of vaccine hesitancy among Somalis in Minneapolis,2 but all of the concern focused on autism. Somalis believe their community experiences an exceedingly high rate of autism, and that they are particularly vulnerable to more disabling forms of autism. Narratives about vaccine injuries causing autism are ubiquitous in the Somali community. Therefore, one extremely common practice for Somalis in Minneapolis is to express vaccine hesitancy by vaccinating their children with all the recommended vaccines except the MMR. Then, once their children have passed the age of onset for autism, or have demonstrated strong verbal communication skills, they give their children the MMR as well. For these parents, the threat autism poses is unfamiliar and terrifying, whereas the

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risk of measles is well known and manageable.3 Somalis feel that they are faced with an epidemic of autism, whereas measles outbreaks are rare. This form of vaccine skepticism is not well documented in existing literature. The second formulation of vaccine hesitancy is expressed by parents of children with autism who have forged an epistemic community, structured in dominance by the belief that their children were vaccine injured. They have connections with the larger vaccine-­skeptic movement in the United States, but they resist the narrative that the organized “antivaccine” movement convinced them that vaccines cause autism. In this chapter I argue that Somalis’ vaccine hesitancy is rooted in their understanding of medical apartheid in the United States and their experiences with medical professionals and public health experts. As I explained in chapter 4, local public health experts responded quickly and intensely to fears Somalis expressed about vaccine causation when the high rate of autism in their community was first documented. Ironically, this focused attention led to bifurcation of the community: it ameliorated some Somalis’ concerns and intensified those of others. I argue that Somalis’ vaccine hesitancy in Minneapolis is another performance of distinction. While Somalis may rely on and take advantage of certain medical services, refusing vaccination is a means by which they defy and resist their assimilation and the racial injustices of the American health system. It is also an expression of their exceptional experiences with autism. Somalis believe they are particularly vulnerable to disabling forms of autism because their bodies are ill-­prepared for life in Western societies. Vaccines are interpreted as a Western technological source of toxicity, but one that they can refuse. Vaccine programs ask people to defend the common good, but Somalis do not feel included in the social contract or protected by the state.4 Their vaccine skepticism reflects their embodied experiences of marginalization. In Minneapolis, public health officials try to assuage Somalis’ fears of vaccination by presenting evidence of vaccine safety and information about autism. However, public health officials and medical professionals often discount Somalis’ concerns—­by telling them they are wrong to consider their community uniquely vulnerable to autism, wrong to presume that autism does not exist in Somalia, and most assuredly wrong to think the MMR vaccine might cause autism. To Somalis, this is a rejection of their reality and distinctive experience with autism. For example, Jama Duale points out that experts fail to explain why Somalis endure such a high rate of autism: [The local Department of Health] comes, brings us together as a Somali community, many times, and they’re talking to us to convince us that shots [are]

Vaccine Skepticism / 155 not causing the autism, but we don’t believe them because there is no research [into causes]. . . . What’s causing? Especially why is every sixth family in the Somali community [affected by autism]? . . . Some families, they have four or three [kids with autism]. Everybody [is] blaming the shots (Jama Duale interview, 7 November 2015).

Another parent told me that she attended an MDH education session because she wanted to learn more about autism, but her anxieties were eclipsed by a myopic focus on vaccine compliance. The experts told her, “Immunize, immunize, immunize. . . . I’m not saying the doctors are prejudiced, but the doctors are not giving advice to the parents. . . . They are not helping us understand the system or giving us information. What they’re giving you is, ‘Your kid, he needs the booster.’ ” (interview, 7 October 2015). This mother faced obstacles finding resources for her son with autism, but MDH experts made her feel as though they only cared whether she vaccinated him. Many parents told me their doctors intimidated them: I refused the eighteen-­month shots. I said, “No.” I told the doctor, “I’m having already a problem with [my son with autism]. I don’t wanna give vaccines.” I stopped giving him vaccines, thank God. . . . For my daughter, I waited and waited and waited and waited. When she was one year, I agreed to the four-­ month shots. . . . When she was two years . . . she got her one-­year vaccine. I mean, as I told you, my doctor is intimidating. He drives you crazy, every time you go see, and he really intimidates you a lot. . . . One lady I know refused to go back to him because he intimidated her about the vaccines and she has a son with autism (interview, 11 June 2014).

While doctors and public health experts try to combat fear with scientific evidence, many Somali parents interpret these efforts as a denial of their unique experiences and the uncertainty they face. It also feeds into distrust Somalis harbor against the American health care system. Fartun Weli, a Somali director of a health literacy organization in Minneapolis, told me that a woman she met, who had just arrived in the United States from a refugee camp in Ethiopia, cited the Tuskegee experiment as proof of racial discrimination in the United States. She said, “This woman did not speak one word of English, but knew the term guinea pig. . . . The mistrust does not start with their experiences of the US health system. It starts with stories being told, even in the camps, about minorities being treated differently” (interview, 17 September 2015). Much like African Americans, Somalis cite a history of racial discrimination as proof that

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the US medical establishment cannot be trusted. Many Somalis are also aware of or have experienced coercive vaccination campaigns in East Africa where local healing practices were ignored. For others, the health disparities they face in navigating a privatized health care system as poor, often uneducated, refugees is proof enough of racial discrimination. When scientific evidence is presented as incontrovertibly “true” and beyond debate, and yet the scientific establishment is known to be responsible for discrimination, racism, and the use of marginalized populations as guinea pigs, then communities come to distrust not only scientific knowledge but those who adamantly, unquestionably, and patronizingly stand behind it. Like other contemporary vaccine skeptics, some Somalis believe that the government, in collusion with the pharmaceutical industry, is withholding information about vaccine harm. “When [the local Department of Health] comes and says shots don’t cause autism . . . nobody listens because the pharma-­medical companies, they will lose if they say, ‘This is caus[ed] by the shots,’ because they have to pay millions [to] children who have autism. They have to pay, and they are trying to cover up everything they know” (Jama Duale interview, 7 November 2015). Interviewees in Minneapolis regularly mentioned the CDC whistleblower story discussed in chapter 3 of this book, which caught Adar’s attention because it “proved” to her that Black children are more vulnerable to vaccine harm. But it equally “proves” to many parents in Minneapolis that “the government is hiding something,” and that there is “racial motivation” behind the cover up (parent interview, 1 November 15). Vaccine compliance relies upon a trusting public. Yet, as the stories I tell here show, Somalis distrust US health care for a number of reasons. First, they hail from a region of the world where Western-­based medicine, and vaccines in particular, have long been wielded as a tool of empire. Under colonialism and neocolonialism, Western health workers, often backed by the military, have coercively vaccinated people in the name of Western medical “progress,” without heed of local ontologies of the body or structures of healing (Vaughan 1991; Leach and Fairhead 1997; Renne 2010). In addition, Somalis have learned about the history of scientific racism in the United States, and understand that people of color have often been abused (in the United States and abroad) in the course of scientific research and in the name of medical advancement. Somalis also experience health disparities and discrimination as they navigate the medical apartheid of the US health care system (Washington 2006). Like African Americans, Somalis are both “underserved and overexposed” within the US medical establishment (Nelson 2011). They face health care neglect, but are also overexposed to

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biomedical surveillance and abuse. Finally, they experience patronizing and condescending attitudes in their physicians’ offices—­places where they go to get help—­and are often dismissed as ignorant and ill-­informed. Scholars document a long history of African American distrust of biomedicine, but this is only rarely linked to vaccine hesitancy.5 Whereas whites are blamed for their vaccine decisions, marginalized populations are represented as incapable of vaccine decision-­making. Public health experts draw a stark line between those who are unvaccinated and who consciously choose to exempt from vaccination (generally from wealthy white neighborhoods) and those who are simply under vaccinated (generally poor, marginalized communities who face access and knowledge barriers [Szilagyi et al. 2002; Chu et al. 2004; Luman 2005; Gust et al. 2008; Omer et al. 2009; Bearman 2010; Sugerman et al. 2010; Dempsey et al. 2011; Moser 2014]). This strips African Americans of their health agency and their righteous views of being discriminated against in the US health care system. I argue that Somalis embody distrust, inculcated from an array of layered experiences with colonial medicine, the US health system, and their ongoing encounters with doctors and public health professionals. Rather than being an individual or group attribute, this distrust is deeply relational. Ultimately, this chapter is about truth and trust: which truth is given credence, and how people determine what information, people, and institutions to trust when making decisions about their children. As Leach and Fairhead have argued, vaccines are produced and monitored at the global and national levels, but reach into the most intimate spaces of our familial lives, ultimately affecting our own and our children’s bodily defenses (2007: 2). The global implementation of mandatory vaccinations has seriously reduced the incidence of infectious diseases worldwide, but vaccine biopolitics are complicated. They are represented as a universal good, but many perceive vaccination as forced assimilation to a Western model of health. As Martin explains, “Accepting vaccination means accepting the state’s power to impose a particular view about the body and its immune system—­the view developed by medical science” (1994: 194). Marginalized populations understand that their lives are undervalued by the state, undermining their sense of inclusion in the social contract. Racial disparities, discrimination, and medical abuse belie inclusionary protectionism. This chapter explores the racialization of vaccine policy and refusal. I begin by reviewing the subtle racialization that takes place when vaccine hesitancy is covered in national media outlets and among public health specialists, and I call into question some of the presumptions within the scholarly literature on vaccine hesitancy. I then explain how vaccine skepticism

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became dominant among Somalis in Minneapolis, and how local officials responded. I review Somalis’ beliefs about vaccination, and their palpable fears of autism. I end by explaining how Somalis’ vaccine hesitancy reflects an accumulation of distrust, overdetermined by multiple experiences with American medicine.

Vaccine Morality Tales: Unvaccinated versus Undervaccinated Recent national surveys show that vaccine delay and refusal are on the rise. According to a 2010 nationally representative household survey, more than one in ten parents of young children use an alternative vaccination schedule, and a large proportion of those who follow the recommended schedule are “at risk” of switching to an alternative schedule (Dempsey et al. 2011). Drawing on national American Academy of Pediatrics periodic surveys, the number of pediatricians reporting parental vaccine refusals increased from 74.5 percent in 2006 to 87.0 percent in 2013 (Hough-­Telford et al. 2016). The CDC found that 2017 was the third consecutive year in which vaccine exemptions have risen. While states that do not permit school vaccine exemptions for religious or philosophical reasons had exemption rates of 0.1 percent (Mississippi), states that allow these exemptions (Oregon) had exemption rates of 7.6 percent (Mellerson et al. 2017). Zerbo and colleagues found that children diagnosed with autism and their siblings were less likely to complete the full vaccine schedule (2018). Media and public health professionals turn vaccine compliance into a morality tale, and suggest that vaccine hesitancy stems from two sources: influence by an organized social movement, or ignorance. There is an evil villain: usually a white middle-­class mother who has eschewed the social contract in order to selfishly protect her own child. Often this mother is linked to a vilified “anti-­vaxx” movement, which is portrayed as pseudoscientific and prone to proselytizing, out to convince vulnerable, “unwitting” populations of government conspiracy. Public health workers operate on the side of truth and reason. They are heroes who rid the world of infectious diseases by championing a common social good and protecting our children. Right and truth are so obvious that “antivaccine” sentiments are seen as an expression of pure evil. Harriet Washington, in a review of Seth Mnookin’s The Panic Virus (2012), describes this black-­and-­white narrative clearly: “We have rational, disinterested, and fully credentialed scientists on the one side, [and] scientifically illiterate, crystal-­peering, aura-­perceiving rabble rousers on the other—­and nothing in between” (Washington 2011). For example, consider this media excerpt:

Vaccine Skepticism / 159 Given the risks of measles, and given the remarkable effectiveness and safety of the vaccine, why don’t people vaccinate their children? The primary reason is simple: it’s the highly vocal, supremely confident, and utterly misinformed anti-­vaccine movement. Anti-­vaxxers . . . have launched systematic efforts throughout the US . . . to convince parents not to vaccinate their children, claiming that vaccines cause a variety of harms, none of which are correct. . . . The measles vaccine was a miracle of modern medicine, and it’s been administered safely to hundreds of millions of people. Measles is a dangerous illness, but we can prevent it (Salzberg, Forbes, 2019).

According to this morality tale, then, one would only question the “miracle of modern medicine” if one had been brainwashed by the “utterly misinformed” “anti-­vaxxers.” Being hoodwinked by an organized social movement is the first explanation prominent in media coverage. Often “anti-­vaxx” activists are described as taking advantage of “insular” communities, who are portrayed as vulnerable to these ideas because they do not know any better. For example, in the spring of 2019 in Orthodox Jewish neighborhoods in the Bronx, the “antivaccination” movement circulated a handbook suggesting that vaccines were a threat to public health and explaining that they were not kosher. According to multiple news reports, the movement was attempting to convince these “insular,” “close-­knit,” “isolated” “cultural groups” not to vaccinate their children (Reddy 2019: Nir and Gold 2019; Pager 2019). Academics often express this same logic: [Infectious diseases] pose real risk of infection, despite our advanced technology and regardless of individual SES. Indeed, this was recently, painfully recognized in a Somali-­American community measles outbreak in Minnesota that has been attributed to the influence of higher-­SES actors working to indoctrinate less educated Somalis with antivaccination sentiments (Lo and Laurent-­Simpson 2018: 6; my emphasis).

One of the core tenets of these public health and media accounts is that people who have doubts about vaccines or who question vaccine safety are ignorant, poorly informed, and simply do not understand science. This is the second prominent explanation for vaccine hesitancy: a knowledge deficit. In 2015, an outbreak of measles that started at Disneyland resulted in 147 infections across multiple states. Dr. Thomas Frieden, director of the CDC, suggested in a CNN interview that most of the people who delay vaccines simply do not know any better:

160 / Chapter Five So our immunization program has done in-­depth studies with parents, with doctors, and with others, and what we find is that the vast majority of people who are choosing not to vaccinate their kids aren’t the hard core. . . . They’re folks who just may not recognize, one, that measles is still here, two, that it can be very serious, and three, that by not vaccinating they’re not just putting their own kid at risk—­they’re also putting other kids and other vulnerable people in their neighborhood and community at risk (CNN, 10 February 2015).

Of course, the media also suggest that “hard-­core” “antivaccine” activists are ignorant. An NPR article suggests that a popular response to the growing “tough questions [that] science raises in our lives has been to act as if it doesn’t exist. . . . The anti-­vax movement, like climate change denialism, rests on the assumption that if you disagree with certain established scientific results you can just ignore them” (Frank 2015). Vaccine skeptics are portrayed as unknowing because the science is clear: there are no studies showing a link between vaccines and autism, and vaccines have eradicated many infectious diseases from the planet. If you cannot understand this, the media suggests again and again, something is wrong with you. Obviously, some media accounts provide more nuanced and complicated analyses of peoples’ growing concerns about vaccines, but these articles get overshadowed by the incessantly repetitive tropes that dominate mainstream press coverage of outbreaks. Other social scientists have also critiqued media and public health experts for suggesting that vaccine hesitancy stems from social movement influence and ignorance. Blume argues that it is easier for the media to blame “antivaccination” social movements than to recognize that vaccine concerns usually arise from personal interactions with medical professionals (Blume 2006; Yaqub et al. 2014; Goldenberg 2016). Joining “antivaccine” groups is often the result, not the cause, of parental concerns, because parents turn toward social movements when they face “the “social opprobrium non-­ vaccination arouses” (Blume 2006: 638). Goldenberg critiques the media’s framing of vaccine hesitancy as a knowledge deficit, which presumes that expert forms of knowledge provide a sufficient basis for public policy, and that those who disagree simply do not understand. Such a science-­versus-­ ignorance framing leads public health experts to adopt didactic educational programs, which have been largely unsuccessful (2016). Rather than knowledge deficits or influential social movements, vaccine hesitancy is better explained by situating it within a broader shift in the ideologies and infrastructure of health care that accompanied neoliberalization

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in the 1980s. Health care neoliberalization made individuals responsible for their own health decision-­making, and transformed medicine into a consumer “choice.” Elite parents who are vaccine-­skeptical embody the neo­ liberal norm to become “expert parents,” responsible for addressing each individual risk their child faces (Hobson-­West 2007; Senier 2008; Kaufman 2010; Reich 2014; Lakoff 2015). Lakoff explains that vaccine resistance is not a “disavowal of collective responsibility,” but a “pressing feeling of ethical obligation” to care for one’s child and become an expert on her immune system (2015: 422). In an increasingly risky world, parents face an abundance of contradictory and confusing information about safety and harm, and they assume the burden of responsibility to consume that knowledge and act upon it. Such is the new ethics of parental, or perhaps more specifically, maternal care (Kaufman 2010: 23). Many even feel as though to blindly trust vaccines is to shirk one’s parental duty to make informed choices. Rather, a critical parent takes the time to understand health services and products, and does not just thoughtlessly accept scientific consensus (Yaqub 2014; Sobo 2015). In fact, some scholars point out the contradiction in health messaging that vaccines send. With the rise in consumer choice and the neoliberal ethos of self-­responsibilization, people are asked to take on the burden of health decision-­making, but not when it comes to vaccines. With vaccines, people are supposed to simply trust experts and comply. In fact, it is not just contemporary health care but parenting itself that demands constant personal responsibility (from sleep training to discipline to school performance [Goldenberg 2016]). So why wouldn’t this ethos of parental choice and responsibility extend to vaccines? An article from The New Republic on the Disneyland outbreak in 2015 cites Jennifer Reich’s work on this topic, and suggests that people who are skeptical of vaccines are more American than those who vaccinate: “Parents who opt out of vaccines come to their decision by prioritizing the very virtues American culture recommends: freedom of choice, consumer primacy, individualism, self-­determination, and a dim, almost cynical view of common goods like public health” (Bruenig 2015). Reich contends that class and race privilege are essential for understanding vaccine hesitancy because not everyone has the same access to “choice” (2014; 2016; 2017). “Neoliberal expectations that each person is an autonomous choice-­maker ignore how these choices exist within structures of inequality where those with fewer resources have fewer options from which to choose” (2017: 51). More resources, she argues, allow for more freedom from state mandates as only knowledgeable parents can easily navigate state

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bureaucracies, like school boards, without inviting state surveillance. Families of color who opt out are more likely to face state sanctions. For example, welfare recipients have been punished if their children are not fully vaccinated (2016: 14–­15). The percentage of students using personal belief exemptions doubled between 2007 and 2013, and higher median household income and whiteness were predictors of exemptions (Yang et al. 2016). Reich is clearly correct to point to race and class as important factors in understanding vaccine hesitancy; however, because she presumes people who are undervaccinated are not making health choices, her analysis reifies problematic racial presumptions. Social scientists and public health experts draw a stark line between those who are unvaccinated (middle-­class white people who choose not to vaccinate) and marginalized populations who are undervaccinated and face knowledge and access barriers. As Berezin and Eads explain, “The geographic locales where vaccination rates are low enable us to contrast the difference between imagining risk, the prerogative of the affluent, and being at risk, the fate of the poor” (2016: 240). Using demographic mapping, Berezin and Eads illustrate the uneven landscape of vaccine coverage, showing that the lowest vaccine rates are in both wealthy enclaves and “low-­income and low-­education” areas. They presume that the poor cannot rather than choose not to vaccinate. But in fact, neither Reich nor Berezin and Eads actually interview poor people of color who are not vaccinating. These accounts provide ample evidence of white peoples’ choices, but the so-­called undervaccinated are given no voice. It is true that many people who eschew vaccines and invoke personal belief exemptions are white and privileged, and it is equally true that many poor people face health inequalities and lack proper health insurance, a lack which can affect their ability to vaccinate.6 But to assume that marginalized populations do not make health choices when it comes to vaccines strips them of health agency and ignores their historic distrust of the medical establishment. I agree that a neoliberal ethos of responsibilization is often the privilege of the middle class, and that there is uneven access to consumer “choice” (Reich 2016). Nevertheless, marginalized populations still have the ability to choose, and even when they face structural constraints in exercising their choices, they may harbor doubts about vaccination. In fact, their experiences with health disparities may be at the root of their distrust of vaccines and the broader biomedical establishment. Therefore, we first require evidence of marginalized peoples’ beliefs about vaccines, and likely require a different set of causal mechanisms to make sense of their concerns.

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Vaccine Resistance in Minneapolis As I have mentioned, there are two different expressions of vaccine hesitancy among Somalis. Most Somalis are extremely anxious about autism. They give their children all the required vaccinations except the MMR. Or they give the MMR to their girls but not their boys, since they understand that autism is more prevalent in boys. Many of these parents will give their child the MMR vaccine once it is clear the child does not have autism. A Somali nurse who works at a health care center in Cedar-­Riverside explains this view: It’s important to be clear that the Somali community is not antivaccine. They do vaccinate their children. . . . It’s only the MMR that they will decline. . . . I do try to educate them and tell them there is no link, but 80 percent of the time they will refuse it. If you try to educate them, they’ll say, “I will get it eventually. I know measles kill, and measles is not good for my child. I know the effects of it, because it happened to me, or it happened to my brother or my sister.” They know the effects of it, but they also are not sure if [the vaccine is] safe for their child. They’ll say, “I’ll wait till my child speaks, or my child is able to talk and articulate what they need, rather than just giving them the shot” (pediatric nurse practitioner interview, 5 October 2015).

As this nurse makes clear, some Somalis are familiar with the deadly impact of measles, having experienced outbreaks in East Africa. Yet their fear of autism overshadows concerns about measles. Another non-­Somali pediatric nurse practitioner, who works at a health care center in Cedar-­Riverside that caters to people who are underinsured, said that 80 to 90 percent of her clients are East African, mostly Somali, and that she often sees them when they are new immigrants. She explained that she first asks them whether they have been immunized, and whether they have the records. Hardly any have documentation, though they all say they have been immunized. Because they have no documentation, she has to “start from the beginning” (interview, 27 October 2015). She said that most Somalis refuse the MMR. “What they say to me all the time is, ‘I don’t want the shot that will make them stop talking and will make them behave badly.’ That’s what they say to me. Most of them don’t know what the name of the shot is. They just know that there’s a shot out there that will make their kids stop talking” (27 October 2015). As I have explained in chapters 1 and 4, I conducted two focus groups in Minneapolis with parents who were hesitant to discuss autism, despite

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having been recruited on that basis. These parents talked extensively about the “fifteen-­month shot” and how they refused to give it to their children. woman 1: We are Somalis. We were born in Somalia and we never had that autism. It’s new to us. . . . I believe the shot is the one that caused autism. claire: But you had shots in Somalia. woman 1: Yeah, we used to back home, but they are healthy. We never had a problem with them. . . . I [have] seen the kids who speaks before they took the fifteen months, and then it stops when he gets the fifteen-­month shot. That’s what I [have] seen, myself. . . . So none of my kids get the shot (8 January 2015).

This parent insisted that the vaccines given in East Africa are “healthy,” but she was dubious of those manufactured and provided in the West. Refugees are much more likely to trust firsthand experiential accounts of their compatriots than to trust a health system they know is discriminatory and racist. And Somalis insist that they have seen the injury occur. woman 2: We have seen a lot of children who were well before the shots. They were active and were developing speech and everything. When they got the shot, then they change totally. Their activities and everything, and then they became a sick child. claire: You have seen this happen yourself? woman 2: This morning, I talked to my neighbor. . . . I told her to come today [to the focus group], but she couldn’t. . . . She told me: ‘Please share with the others, my son, he was healthy and, you know, doing everything. But after, when I give that shot, that’s when he became autistic. And now, you know, he doesn’t have any life. He just, you know, stays there. There is no other future ahead of him.’ We have seen a lot, a lot of the kids who had that. . . . When you see your child who is great and nice, you know, when he’s a year old, all of a sudden when you give that shot, he stops talking, starts those signs, it’s really something . . . (9 January 2015).

After this discussion, I asked how they feel when doctors or public health experts tell them that vaccines are safe and they are wrong to fear them, and one man said, “It’s very difficult to believe. . . . We are not completely 100 percent sure about the shots, but we don’t know what else it could be.” Another woman told me that her doctor explained the dangers of measles to her and “I believed him because he is a doctor,” so she went ahead with the MMR. But most others said that they were too anxious to get the MMR.

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The fear of autism in the Somali community is palpable. The uncertainty surrounding the etiology of autism and the fact that it is so highly prevalent in their communities causes insecurity. I first met Fatuma because she was working as a community educator for the Immunization, Tuberculosis, and International Health department of the Minnesota Department of Health (MDH). She met with me several times in her capacity as a health educator, when I was conducting interviews with public health experts and other Somali community liaisons in 2013 and 2014. When I returned to conduct interviews in 2015, she had married and had two children. She had quit her job with the MDH, but retained an affiliation. When I interviewed her in the fall of 2015, her little girl was two and a half and her son was six months old. Even though she had worked for the MDH and had spent her time convincing other Somalis of the safety of immunizations and the MMR in particular, she was having doubts about whether or not to give the MMR to her own son. Here is how she described it: After I had my daughter, she got her MMR at fifteen months, even despite everybody saying, “Don’t do that.” My husband was very angry with me. . . . He told me, if any thing happens to her, I’m responsible for that. . . . Then I had my son, and then, at two months, when I took him for his two-­month checkup, he got some shots . . . he didn’t do well. He got sick, a fever. . . . I told the doctor, “I’m not gonna give him all the shots at one time. He didn’t do well, . . . so I don’t want to follow the schedule” . . . I have learned a lot about autism, and I know . . . they say the MMR doesn’t cause . . . autism; but see, that time I believed the information, the research, and even what I learned from MDH, but then, now, I don’t know. I’m conflicted. I want to wait on the MMR. . . . Now I’m like those moms I used to listen to when I interviewed. The same exact story they told me, it’s happening to me. . . . This small voice in the back of my mind says, “What if it’s true? What if this vaccine is problematic? Who do I trust?” . . . It’s tough when you have kids, and at the end, you want to protect your child. You want to protect them from these diseases, but you don’t also want them to give that shot if it’s actually causing another problem (Fatuma Irhsat interview, 18 September 2015)

This is not a knowledge deficit. This woman is highly educated and understands vaccine safety; she used to teach it. She knows more about vaccines than most people. Nonetheless, there is a “small voice in the back of her head,” and she does not know whom to trust. Her son had a fever after his first vaccines (which had not happened to her daughter), and she knows autism is more prevalent in boys. In fact, many parents I spoke with

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understood the risk they were taking in avoiding the MMR, but their fears of autism exceeded their fears of measles.7 Therefore, most Somalis in Minneapolis are uncertain about where to place their trust. The narrative that vaccines cause autism circulates widely among Somalis, and Somalis tend to trust their compatriots over Western health officials. For them, vaccine hesitancy is a pragmatic choice; it is something they can do to protect their children (Brownlie and Howson 2005). However, the fact that they do not consider vaccines mandatory also reflects their sense of exclusion from the common good and their belief that their experiences with autism are exceptional. The second articulation of vaccine hesitancy is expressed by Somalis who have children with autism, whom they believe were vaccine injured. This group is an established epistemic community that views vaccines as the primary causal determinant of autism. Some are active vaccine skeptics, and others simply believe their children were vaccine injured and have decided not to vaccinate their other children. The very first parent I interviewed in Minneapolis told me the following story of vaccine harm, which I later discovered was prevalent. There was a lot of shots we received when we came. After them, my son lost his words. . . . I asked the doctor, “What is going on? Why is he drooling and he lost all the words? What’s going on?” He said, “I don’t know what’s going on and what caused the problem.” Then he referred [my son] to other doctors, and they said he needs to get speech therapy and different specialists. . . . The specialist says, “It looks like autism.” [My son] used to run . . . He used to run all over. . . . It was after the shots that he stopped speaking. . . . We got shots in Kenya [in the camps]. . . . Kenya, the shots he got, I brought it to them, all that list. . . . I believe they might gonna give the shots he already got. . . . I think that might be the problem. . . . When they give him the shot, that’s when I saw the symptoms in my child (interview, 16 October 2014).

According to this account, even though the mother had brought documentation of the vaccinations her son had received in the refugee camp, the doctors in the United States gave him the full battery of vaccinations, which she believes caused her son’s autism. All refugees who lack proper documentation of previous vaccines are given all recommended immunizations once they are resettled (Lifson et al. 2001). As I explained in chapter 1, many Somalis believe they and their children were given “double vaccinations.” Public health experts often ignore the unique biographical experiences of migrants that informs their health decision-­making.

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Another mother told me that she thinks the MMR caused her son’s autism because, after getting the vaccine, he slept so long that she was unable to get him up. After that, he started showing symptoms of autism. For her second son, she waited to give him the MMR until he was three and “talking talking talking.” She said that was the only vaccine she avoided (interview, 24 October 2015). Another mother thinks that it is the number of vaccines given to children at such a young age that is the problem. She says that the reason there is no autism in Somalia is that vaccines are more spread out and are given at older ages;8 but she also thinks that multiple factors in the United States combine to make Somali children immune-­ compromised, thus leading to greater incidence of not just autism but food allergies, asthma, and eczema. Both her sons were immunized in the United States, and one developed autism while the other has very sensitive food allergies. She suggests that the combination of pollution, vaccines, and poor-­quality food accumulates in children’s bodies, causing these issues (7 October 2015). Several parents explained that their children had immediate responses to the vaccines—­seizures, high fevers, blank stares—­and then symptoms of autism began to emerge (interviews, 1 and 7 November 2015). Today these are familiar stories told by Somalis whose children have autism, but how did they become commonplace? When and why did Somalis start harboring fears of vaccination? According to both parents and public health professionals, Somalis first noticed a high prevalence of autism in their community in 2007 and early 2008. In July 2008, the Minnesota Post ran a story on the topic (Gorman 2008), followed by a Star Tribune report in August 2008 (Lerner 2008), in which public health officials were already worrying about the possible link parents were making to vaccines. In November 2008, the MDH held a community forum with members of the Department of Education, the Autism Society of Minnesota, several local autism service providers, and the Somali community (Carroll interview, 14 November 2015; Minnesota Department of Health 2009). Information about autism in the Somali community was shared and discussed. This forum became an important flashpoint between people who work for the local Department of Health and Somalis who believe their children have been vaccine injured. Each tells different histories about how the vaccine causal theory came to wield power in the Somali community. According to members of MDH and other public health advocates who work closely with the Somali community, Somalis were hoodwinked by local “antivaccine” activists and by national leaders like David Kirby and Andrew Wakefield. In the planning meeting for the November 2008 forum, organizers expressed concerns about the “antivaccine fringe” showing up to

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the meeting, and the narrative told at the forum was geared toward tamping down budding concerns about vaccines (Carroll interview, 14 November 2015). David Kirby, journalist and author of Evidence of Harm: Mercury in Vaccines and the Autism Epidemic (2006), met with members of the Somali community in November 2008 (Kirby 2008). Andrew Wakefield met with the Minneapolis Somali community on multiple occasions, beginning in early 2009 (Yuen 2011; Karnowski 2011; Van Denburg 2011; Gahr et al. 2014; Howard 2017). Many local public health workers blame Wakefield personally for significant drops in MMR coverage within the Somali community (fieldnotes, 13 June 2013 and 23 October 2015; Department of Health interview, 4 November 2015). In a 2017 CNN report, local public health professionals were interviewed about this early history. Kristen Ehresmann, director of Infectious Disease, Epidemiology, Prevention and Control at MDH, suggested that vaccine skepticism emerged in 2008 when “antivaccine groups just really started targeting the community” (Howard 2017). In the same article, Michael Osterholm, regents professor and director of the Center for Infectious Disease Research and Policy at the University of Minnesota and former state epidemiologist for Minnesota, said that when Somali parents searched for answers for their children’s autism, they “landed upon” Wakefield’s work, “so by about 2008, we started to see the vaccine rates drop as the word got through the Somali community that autism was linked to measles vaccination” (Howard 2017). It is also common for the media to suggest that “antivaccine activists” took advantage of Somalis and manipulated their views. After the outbreak in 2011 in which twenty-­one people were infected, 38 percent of whom were Somali, it was found that the MMR rates in the community were very low (Gahr et al. 2014). The media blamed Wakefield’s visit for the outbreak (Karnowski 2011; Gahr et al. 2014). In the spring of 2017, there was a larger measles outbreak concentrated in the Somali community of Minneapolis: seventy-­nine people were sick, seventy-­one of whom had not been vaccinated for measles, and 85 percent of the cases were in US-­born children of Somali descent (Hall et al. 2017; MDH 2017). A series of news reports blamed “antivaccine” activists for the outbreak (Howard 2017; Sun 2017; Belluz 2017). For example, Belluz reports, “in 2008, anti-­vaccine advocates . . . began targeting local Somali Americans who had concerns about autism among their children. The activists saw an opening, offering an explanation when the health department couldn’t provide one” (Belluz 2017). This article suggests that immigrant parents may be “uniquely vulnerable” to “antivaccine messages.” According to the MDH and press coverage, the “antivaccine” lobby swooped in to steer the narrative Somalis were telling about their children,

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and they remained in close contact, influencing the development of a strong conviction among Somalis that the MMR vaccine had caused the development of autism in their children. In addition to this causal account, public health experts tell stories of conversion. There are several mothers who were early organizers around autism and worked closely with the “antivaccine” lobby, and who have since abandoned those views and come to understand the importance of vaccines. In a meeting with people who work for the MDH’s Immunization, Tuberculosis and International Health department, I was told about Hodan Hassan, who was featured prominently in several stories posted at Age of Autism, a vaccine-­skeptic website with close ties to Generation Rescue. According to a public health professional, Hodan was convinced that vaccines had caused her daughter’s autism, and had even tried chelation, “but now she has come around” (13 June 2013). Hodan was also featured in a Star Tribune article in which she tells the story of her conversion after a local doctor challenged her to conduct research on Wakefield and his debunked study. The article says that today “she is one of his biggest critics” (Lerner 2011b). In the article, Hassan narrates how she was first convinced by Wakefield, then began to change her mind, and is now speaking at a community forum to allay fears of vaccines in the Somali community. It is very common for the media to tell conversion stories in reporting on measles outbreaks. The dominant narrative about vaccine skepticism in the Somali community employs the two frames which I have suggested are common: Somalis are either hoodwinked by a well-­organized “antivaccine” movement, or they suffer from a knowledge deficit. In both causal accounts, Somalis are afforded very little agency. In 2019, multiple journalists covering measles outbreaks in Orthodox Jewish communities in the Bronx contacted me. They sought to connect the Bronx outbreaks to those in the Somali communities of Minneapolis. The journalists were looking for confirmation that both groups were victims of “anti-­vaxx” indoctrination. I indicated that the causes of Somali hesitancy were complicated, and insisted that Somalis were not simply hoodwinked by national activists, but my contribution was never included in their published accounts. The media and public health experts spend little time trying to understand the experiential, interactional, or structural reasons why the vaccine-­autism narrative has become so powerful in the Somali community. The MDH has made a concerted effort, spending a great deal of resources, time, and expertise on addressing the concerns of the Somali community. A woman who runs community meetings on immunization explained: “We are now trying to focus on what parents fear. The facts are really irrelevant

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when there is so much fear. If parents have a better education on what autism is, then there is less dread about it” (fieldnotes, 23 October 2015). MDH experts have engaged in dialogic approaches to health education. Some Somalis were convinced by these public health interventions, and others “converted” over time. And yet, a large group of Somalis remain convinced that vaccines cause autism, and they distrust the public health experts engaged with their community. Why? When public health experts intervened in the community, many Somalis felt their vaccine practices were being disciplined and their exceptional experiences with autism were being denied. They felt close scrutiny of their vaccine choices, coupled with indifference and disparagement of the tremendous obstacles they had faced in surviving civil war, migrating to the United States, and then navigating an uneven and fragmented health system—­all of which they believe manifest in more disabling forms of autism. Somalis’ vaccine hesitancy is a defiant response to this disregard; it is a performance of distinction. It is a tool of resistance against the onslaught of health surveillance in their lives. They claim that they were not unduly influenced by white middle-­class vaccine skeptics, because their own beliefs stem from experiences unique to refugees. And while they may use mainstream medical practices, they deny vaccines to resist the broader injustices of medical apartheid. I provide evidence of this analysis by recounting how Somalis explain why vaccines became the dominant causal mechanism adopted to explain the high autism rate in the community. According to many Somalis, the November 2008 MDH forum set out to control the narrative about vaccines, but failed to respond to peoples’ real concerns about the high incidence of more disabling forms of autism experienced by Somalis. For many Somalis in attendance, the forum was a disappointment. Instead of receiving important information about what they perceived to be a real threat facing their community, they were subject to rote lessons on vaccine safety and were told definitively that vaccines were not a causal factor for autism. A Somali doctor was brought in to announce that autism did in fact exist in Somalia, and that therefore autism could not possibly be caused by any environmental condition in the United States (interviews, 7 October 2015; Carroll, 14 November 2015; Harrington, 20 June 2014). Such an approach was viewed as didactic and patronizing by the parents in attendance. Many felt they were being treated as ignorant and uneducated immigrants who “don’t speak English” (interview, 7 October 2015; Abdirisak Jama interview, 1 November 2015). Parents at the meeting also asked specifically about the known risk connected with receiving double vaccinations, which immigrant families experience frequently, and were

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told there was no additional risk associated with the practice (Harrington interview, 20 June 2014; Carroll 2009). According to Somali parents active in the early years of organizing, parents whose children were receiving special education services for autism began meeting to discuss their experiences in 2007 and 2008 (fieldnotes, 23 October 2015; interview, 9 November 2015). They discovered that each of their children had developed seizures after the MMR vaccine. They researched online, and found that others had had similar experiences. This group, which started to grow in size, reached out to David Kirby and Andrew Wakefield and invited them to meet with the Somali community (interview, 9 November 2015). Somalis are quite indignant at the media and public health portrayal of their relationship with Wakefield. One parent, who attended the meetings with Wakefield from 2009 to 2011, describes how the media distorted his first visit. This parent insists that the community already subscribed to beliefs about vaccine causation based on their experiences, and that those beliefs were what had sparked their interest in meeting Wakefield—­not the other way around. Wakefield met with a group of parents. . . . He told us he lost his [medical] license, but . . . he said . . . that time will tell. Even though now people are after him, I believe him. Wakefield was genuine. . . . Wakefield didn’t tell us [that vaccines cause autism]. The fact was there. . . . [For] some people, their kid was speaking, and when they took them [to the doctor to get the vaccine, then] . . . they had fever for days and sick. Some have seizures . . . the fact is there. Because Wakefield was around the city, all the news was there. All of them blaming him. . . . “Oh, these poor Somalis, they don’t speak English, blah, blah. He’s just telling them all this.” It was nasty. . . . “He’s manipulating them.” It was [on] NPR. Even doctors from [the] university were saying something about that (interview, 7 October 2015).

According to the parents I interviewed, they had invited Wakefield and Kirby because of what they were seeing in their children: “The fact was there.” It is important to them that they not be viewed as unknowing immigrants who were duped by Andrew Wakefield. Rather, they see themselves as active knowers seeking out allies and resources. It is possible that Somali parents sought out relationships with national vaccine skeptics because of the opprobrium they experienced when they expressed doubts about vaccines (as argued by Blume 2006; Sobo 2015). But they also point to their refugee experiences as important resources for their distrust of vaccines: many had

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experienced coercive vaccine campaigns in East Africa (where rumors that vaccines are used to forcibly sterilize women are common), and others had been vaccinated multiple times against the same diseases. These concerns about vaccination are not shared by the vaccine skeptic movement. In the end, the reason why vaccines have become a popular causal culprit for explaining autism in the Somali community is not that Somalis lack proper knowledge about vaccinations, or have been manipulated by the “antivaccine lobby.” Nor is it that they are driven by a neoliberal ethic to manage growing scientific and environmental uncertainty by intervening in the microprocesses of their children’s immune systems. The reasons are far more complicated, and are tied to Somalis’ social and cultural location as refugees from East Africa, and their experiences with the American health care system. When vaccine educators blame “antivaccine” movements or a knowledge deficit, or even try to more dialogically respond to Somalis’ real fears of autism, they contribute to Somalis’ sense that American public health and medical professionals disregard and doubt their concerns and experiences. Somalis’ vaccine hesitancy is a performance of distinction and a sign of their distrust of Western medicine because it was a tool of empire, because of the legacy of scientific racism, because of the ongoing medical apartheid people of color face in the US health care system, and because they are treated with disrespect when they visit their doctors. In the next section I begin by reviewing literature on ethnoracial differences in medical and vaccine distrust, and then I develop a theory of accumulated distrust to account for Somalis’ vaccine resistance.

The Accumulation of Distrust Medical distrust among African Americans has become a medical truism that reifies racial group differences (Benjamin 2014: 756). The literature on Black distrust focuses on African Americans’ hesitancy to engage in clinical research (Gamble 1993; Harris et al. 1996; Corbie-­Smith et al. 1999; Crawley 2000; Braunstein et al. 2008), their distrust of the health care system (Dula 1994; Gamble 1997; Armstrong et al. 2006; Armstrong et al. 2008), or their distrust of health providers (Blanchard and Lurie 2004; Schnittker 2004; Sewell 2015). Much of this scholarship suggests that it is Blacks’ knowledge of the Tuskegee experiment that leads to their distrust of medicine (Yancey et al. 2006; Braunstein et al. 2008; Corbie-­Smith et al. 2002; Gamble 1997; Harris et al. 1996).9 Other accounts recognize that to blame Tuskegee specifically discounts both ongoing practices of medical abuse (the fact that Tuskegee was not an isolated historical event) and the fact

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that Blacks often have multiple experiences of discrimination in the health care system which bolster their distrust (Washington 2006; Wasserman et al. 2007; Jamison et al. 2019). Blacks have both historical and contemporary reasons to distrust American biomedicine, especially given the medical apartheid they experience each time they use underresourced, fragmented, and substandard health care (Washington 2006; Byrd and Clayton 2000). The Flint water crisis, increases in Black maternal mortality, and the proliferation of police shootings make Black Americans keenly aware that their lives and healthfulness are undervalued in American society (Jamison et al. 2019). Many Blacks do not believe the government or its health care institutions have their interests at heart. Yet this structural critique rarely makes it into the medical sociology or population health literature on “Black distrust.” There are two main problems with the scholarship on distrust. First, the sociological literature on trust is disconnected from the medical sociology research documenting “Black distrust,” and neither of these is included in theories of vaccine hesitancy. The approaches remain isolated from one another.10 The second main issue with the literature on medical distrust is that much of it relies on survey methods and operationalizes distrust as an individual belief or group attribute, thereby failing to contend seriously with the structural context of distrust (Wasserman et al. 2007; Benjamin 2011). It also paints Blacks with broad cultural brushstrokes, as fatalistic and noncompliant, insinuating that something is inherent in Black culture that leads to distrust (Benjamin 2011, 2014). In addition, it is not simply that biomedicine has a dirty past—­of eugenic science and the medical abuse of racialized populations throughout the world—­beyond which it has now progressed. It is also not only that the American medical system is fundamentally bifurcated, such that one’s class or racial background determines whether one enjoys the privileges that expensive, insurance-­based, technologically advanced medicine has to impart, or else has to contend with shoddy, underresourced, fragmented, and impoverished health care offered in the public sector (Byrd and Clayton 2000). It is that the legacy of medical apartheid, institutionalized racism, and research abuse has informed and shaped our scientific knowledge. Racism inheres in the scientific consensus and “best practices” of modern Western medicine. It is part and parcel of what medicine “knows.” By discussing the sociality of distrust, Ruha Benjamin suggests that distrust emerges not only from one’s marginalized position in a hierarchically racialized social order, but also from the embodied experiences of

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discrimination, which arise from inequalities people face as they navigate clinical encounters and institutions within the US health system (2011). Building on Benjamin’s analysis, I suggest that distrust accumulates on the basis of one’s social location over time, which includes one’s structural positioning, cultural resources, and interactional networks, as well as one’s ongoing experiences and embodiments. But distrust is also conjunctural and overdetermined; it arises from an accumulation of social logics, discourses, and experiences over the life course—­some of which are contradictory and others socially reproductive. Distrust has a tendency to endure when social experiences reinforce it. For example, Smith explains that Black Americans are often socialized to distrust institutions of authority (like the police, or the medical system) as preparation for living in a racist world (2010). However, the literature on “Black distrust” sometimes portrays distrust as an essentialist, automatic, and unthinking property as opposed to a set of relations established between groups of people and sets of institutions. Giddens (1990) argues that modernity is defined by our ignorant trust in abstract systems; we could not fly if we did not blindly trust pilots and aeronautical engineers. However, the commonsense trust placed in abstract institutions is undermined and disrupted for people who consistently experience abuse within those systems. Just as we tacitly accept our positionality via the inculcation of cultural dispositions (Bourdieu 1977), overdetermined experiences of racism inhere in one’s habitus, routinizing peoples’ relations of distrust with systems of authority. Trust and distrust emerge from the dynamic relationship between one’s structural location, cultural schemas, and subjective experience. Therefore, medical trust and distrust should be understood as relational, contextual, and cumulative, rather than static and immutable. Of course, Somalis’ experiences are both similar to and different from those of other Black Americans. Somali parents’ structural, cultural, interactional, and embodied contexts are similar to those of Black Americans in that they share experiences of exclusion and degradation, both within and outside the health care system. However, Somalis have migrated from an East African country with its own structural contexts, cultural resources, and health ontologies, and they now face a new set of structural-­cultural forces with which they must contend—­an experience Bourdieu would label hysteresis (1977). Analyzing colonial contexts, Bourdieu argued that the colonized experience untimeliness because their embodied sense of self is disjointed from the structural system imposed by colonizers. Being part of a diaspora requires Somalis to straddle and hybridize cultural resources and structural conditions. Their racialization as Black and Muslim immigrants

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and their discriminatory experiences with the medical complex are distinct from those of Black Americans. Their religion and immigrant status invite different kinds of biomedical surveillance. And they do not fully identify with white middle-­class vaccine skeptics because their distrust of vaccines stems from experiences unique to refugees. Their diasporic positionality informs the ways in which they both use and challenge medical systems in the United States. Vaccines become a site for defiance and distinction. Their distrust is politicized in their decision not to vaccinate. In my other work (Decoteau 2013b, 2016), I argue for a more hybrid and layered formulation of habitus. Bourdieu argued that hysteresis (or structural lag) occurs only in situations in which people contend with two radically disjunctive systems, which happens under colonial regimes. Bourdieu suggested that peoples’ habituses would eventually adapt to the new structural conditions (Bourdieu and Sayad 2004). I argue, however, that all habituses are informed by a conjuncture of social logics and field effects, many of which may be contradictory, leading to a layered and emergent habitus that provides more opportunities for reflexivity and agency. Somalis’ habituses are particularly complicated because they are informed by a series of structural-­cultural systems layered upon one another. When racism permeates across these systems and peoples’ experiences of racial discrimination accumulate, then distrust is reinforced. I argue that Somalis’ vaccine decisions are informed by the overdetermination of distrust across multiple experiences and structural contexts. There are four different reasons why Somalis distrust Western medicine: (1) their postcolonial experiences expose them to Western medicine as a tool of empire, (2) they are aware of the history of scientific racism in the United States, (3) they experience medical apartheid in the United States, and (4) their clinical encounters are discriminatory and pedantic. First, then, Somalis’ experiences with the Western health care system start before they even migrate. Living in a postcolonial society, being treated (or left untreated) in refugee camps, and going through the health assessments required to become a refugee all predispose Somalis to views of American biomedicine as colonial, biased, and unlikely to take their own experiences or bodily ontologies into account. According to Fartun Weli, the Somali health educator mentioned earlier, Somalis are primed for how racist the US health care system is before they even set foot in the United States. For example, Somalis are well aware that both colonial subjects and African Americans were sterilized against their will (Weli interview, 17 September 2015), and they have heard the rumors prevalent in East Africa that coercive vaccination programs were plots to sterilize Africans (Renne 2010; Leach and Fairhead

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2007). Although doctors were trusted authority figures in Somalia (Dr. Harare interview, 15 October 2014; Somali nurse interview, 8 January 2015), Western doctors are associated with coercive vaccination and scientific racism. Fartun explains: The mistrust did not start with their experiences of the US health system. . . . The biggest mistrust existed before they even came to the clinic. There is this story that if you are Black, the system has treated you badly throughout history. They come in with fear, mistrust. . . . The mistrust is a story of the background of what happened to other ethnic groups, and people underestimate how genius immigrants are and how resourceful (interview, 17 September 2015).

Some Somalis experienced biomedicine as a tool of empire in Africa, but also understand that African Americans have been subject to medical surveillance and abuse, treated as guinea pigs and lab experiments. Somalis’ diasporic positioning allows them to merge a postcolonial analysis with a critique of US-­based scientific racism—­both of which inform their distrust of Western medicine. Once they migrate to the United States, their experiences of health care neglect and medical apartheid confirm this distrust. In chapter 2, I explained the disparities Somalis encounter in accessing therapeutic and educational services for their children with autism. Other studies have focused on Somalis’ general experiences of health care in the United States. In a community participatory study of Somalis in Kansas City, Filippi and colleagues found that cost, insurance, language, transportation, and navigation of the system were all barriers Somalis faced in accessing health care, leading many to avoid doctors unless they faced a medical emergency (2014). Another study conducted among Somalis in Minnesota found that they are poorly served by the state’s health and social service systems (Pavlish et al. 2010). Somalis reported lack of health insurance, difficulty in navigating the system, experiences of racism, communication barriers, and the experience of being treated by health professionals as ignorant. Fartun told me: The patients, because they are immigrants and Black, there is a perception that they will be met with racism in the health care industry. . . . They think [they will get] substandard care. The patient is coming with all this anxiety so they are ready to bounce. . . . Remember, we’re an oral community. . . . One bad experience spreads like a virus. . . . It is one person’s experience really ruins

Vaccine Skepticism / 177 everybody, but it’s a way to communicate and alert one another. . . . Doctors also see them as really needy—­they look at immigrants and all they see is need. . . . It debilitates peoples’ self esteem (interview, 17 September 2015).

The barriers Somalis face contribute to their sense of alienation. Those who have children with autism face a complicated illness, a fragmented and racist health system, and doctors who consistently tell them they are wrong to believe what they believe or to experience what they experience. In addition, many of the parents I have quoted above said that when they first brought concerns they had about autism to public forums or their doctors, they were not told about services that were available to them, but were simply told to “immunize, immunize, immunize.” Somali parents still face knowledge and service barriers to accessing resources for their children with autism, and yet they say their doctors only seem to care about their vaccine behavior. The clinical encounters Somalis have with their doctors reinforce their distrust. First, there are real barriers to establishing trusting doctor-­patient relationships due to language barriers. Somalis use interpreters, which can jeopardize the establishment of trust. As one interpreter explained, “It’s hard for them to build trust with doctors because they have to go through an interpreter. You know? You can only build trust when you’re directly communicating with someone” (FGD, 12 September 2015). Another interpreter suggested that Somalis wanted to confide in their interpreters but the job creates barriers: “Sometimes they give you information and they tell you not to tell the doctor. And we say, ‘Whatever is said in the room, we have to explain to the doctor, we have to disclose.’ Sometimes they say, ‘Don’t say to the doctor, we’re just telling you” ’ (FGD, 12 September 2015). Cultural and language barriers can exacerbate the social distance between Somali patients and their doctors. A Somali physician, Dr. Osman Harare, who practiced in Somalia but serves as a community liaison and health educator in Minneapolis, told me that Somalis also distrust their doctors because they failed to diagnose their children with autism in a timely fashion. Many of those children did not get a diagnosis until they started school when they were five, and then their symptoms were more disabling. Because of the doctors’ lack of knowledge about autism or their failure to recognize the symptoms in Somali children, these parents stopped trusting their doctors’ knowledge, and it was easy for them to believe that autism was caused by the MMR (interview, 15 October 2014). Therefore, Somalis’ distrust of the US medical system is overdetermined by four experiences: coercive vaccination campaigns in East Africa,

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knowledge of scientific racism, medical apartheid, and clinical encounters with doctors who discount their beliefs and surveil their vaccine practices. And yet Somalis do use Western medicine in certain contexts, and only resist mandatory vaccination. So why distrust vaccines in particular? In part this is because Somalis view vaccines as a choice and not a civic duty. They do not enjoy the benefits of inclusion in the social contract, and therefore act out against this injustice through vaccine resistance. In addition, vaccine hesitancy is a performance of distinction that binds the Somali community together. It is a means of articulating their exclusion and of maintaining a sense of community against a discriminating host culture. Experts have told them their experiences of exceptionalism were incorrect, and so they have turned to their compatriots. The epistemic community forged in Minneapolis has become an important site for determining which knowledge and experts to trust, and for shoring up faith in the knowledge and narratives told by community members. Epistemic communities are bounded by trust. This is why Somalis reacted so harshly against experts infiltrating their community and attempting to “educate” and assimilate them toward sci­­ entific consensus. It also explains why they harbor such harsh opinions of Somalis who work for the Minneapolis Departments of Health and Education. Parents who believe vaccines have caused their children’s autism interpret the “conversion” of other Somalis as self-­serving or traitorous. Speaking of one particularly vocal parent who now collaborates with the MDH, a mother told me: I mean, at the beginning, she was against [vaccinations]. Then she’s involved with working for the Minnesota Department. I see the change. She’s changed. Either she was protecting her job, or—­you work for a price. You have to not speak against it. . . . [At community meetings] she would sit with the Department. . . . The way I see it, she was softening the stance she had before. I’m sure she was protecting her job (interview, 7 October 2015).

Somali doctors, nurses, and community liaisons are employed to educate other Somalis on the importance of vaccines, drawing on Somali culture—­ language, religion, and proverbs—­to “sell” vaccine safety. Somalis who sit in the audience of these performances interpret these tactics as strategic (protecting a job) or patronizing (using a Somali doctor who insists autism exists in Somalia). Such performances do not generally work to convince other Somalis to vaccinate their children. Implicitly, public health workers view Somalis who adopt vaccines as more “civilized” and “acculturated.” The conversion stories public health workers tell powerfully illustrate the

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ways in which science relies on and reifies racial logics. And Somalis, who have united around a politics of distinction and who use vaccine hesitancy as a means of critiquing the broader health injustices they have faced, view other Somalis who collaborate with public health experts as untrustworthy. In the end, the anxiety that starts in the refugee camps about scientific racism is confirmed again and again by Somalis’ experiences with the US health care system once they have migrated. They encounter discrimination and injustice in accessing and receiving care, and they are told their experiences of autism are not unique. Due in large part to their structural location as poor, racialized migrants, their encounters with the US health care system lead to an accumulation and reification of distrust, inflecting their dispositions and shaping their outlook. They distrust their doctors, public health professionals, and the broader vaccine system, and instead turn toward more trusted sources of information: their fellow migrants. The accumulation of distrust Somali parents embody, which manifests in their vaccine hesitancy, is multilayered and overdetermined, produced and reproduced by their experiences in the racializing US health care system. When public health professionals suggest that certain people “just don’t know any better,” or that immigrant or ethnic communities are particularly “vulnerable to the antivaccine crusade,” they subtly reify racial group differences by painting marginalized populations with broad cultural brushstrokes. Fully ascribing to “scientific consensus,” then, becomes a marker of acculturation. Racialized immigrant populations may not fully trust vaccine biopolitics because they do not feel included in the common good and do not enjoy the protections of the state, or because they seek to resist this subtle yet coercive scientific conversion. To buy into the social contract that herd immunity requires, the public must have equal access to medical care and trust in the medical system, and must be treated fairly by medical professionals. Under medical apartheid, people may continue to resist their devaluation by practicing vaccine hesitancy.

SIX

The Microbiome and Postcolonial Critique

When I first heard about the high rate of autism in the Somali diaspora, I came across the film The Autism Enigma (Sumpton and Gruner 2012), which featured Adar and Idman and their fateful meeting and eventual research collaboration with Dr. Derrick MacFabe, neuroscientist and director of the Kilee Patchell-­Evans Autism Research Group at Western University in London, Ontario. When I decided to conduct exploratory research on this topic, I reached out independently to Dr. MacFabe and Fatima Kediye, an MSW graduate student who had published an article on the challenges faced by Somali parents of children with autism. I was only marginally surprised when MacFabe suggested that he and Fatima would meet me together to discuss my interests before introducing me to Adar and Idman. The meeting was scheduled for the afternoon of 20 June 2013, at a resettlement organization for Somali refugees located in a Somali neighborhood in northwest Toronto. When I arrived, they sat together across from me, as if they were interviewing me for a position, which in some ways they were. At the meeting, Fatima was reserved and quiet, nothing like the person I would later come to know as fast-­talking and quick-­witted, with a shy smile and self-­conscious laugh. She and MacFabe, a tall and somewhat bombastic fatherly figure, were clearly there to vet me, as they are both fiercely protective of their beliefs and of the Somali families with whom they work closely. As a natural scientist, MacFabe was not sure what a social scientist with no particular training in autism might offer this community. He was concerned that I might be there for profit or sensationalism. He was deeply suspicious, but also clearly excited. The high rate of autism in the Somali immigrant population offered a unique lens into autism etiology—­one that his research on gut bacteria might be able to unlock. His partnership with

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these Somali mothers was important to him personally and professionally. In The Autism Enigma, MacFabe says, “The view that ASD is a brain insult that is permanent and irreversible may be an outdated theory.” He explains that shifts in the gut microbiome may have an effect on brain development.1 When the gut is stripped of its diversity, or fails to attain diversity in the early years of life, pathogenic bacteria may proliferate. In his research he shows that certain pathogenic gut bacteria feed on carbohydrates, producing propionic acid (PPA) as a metabolite. When he gave propionic acid to germ-­free mice, they became hyperactive and less social, engaged in repetitive behaviors and abnormal posturing, and became fixated on objects—­all signs of autism (MacFabe 2015).2 It is possible, MacFabe argues, that PPA is having an effect on gene expression, the nervous system, and metabolism in children with autism. If parents stop feeding these gut bugs by giving their children carbohydrates, their behaviors may improve. It was this research that attracted Fatima Kediye. When Fatima began working as an in-­home caseworker with Somali children with autism, she noticed one particular boy who ate a lot of sweet cakes. She suggested the child’s mother stop feeding them to her son. She suspected it might reduce his hyperactivity. The child’s behavior improved. Fatima started recommending that parents limit sugar and carbohydrate intake and introduce a more diverse diet, and she saw dramatic improvements in the children’s behavior. She told me she was reminded of a Somali saying which does not translate well, but essentially means “sickness is in the stomach” (interview, 10 June 2015; fieldnotes, 4 June 2014). Fatima began reading about gut dysfunction and autism, and she came across MacFabe’s research. She contacted him, and they met at the 2009 Autism One conference. In the interview transcript from The Autism Enigma, MacFabe describes meeting Fatima, Idman, and Adar and how their plight may illuminate important causal pathways for the development of autism. When I was in one of my speaking engagements, a large group [of Somalis] came to talk to me after and . . . I became quite touched in terms of their ability to want to help . . . find an answer to this problem, not only for their own community but . . . for the benefit [of ] families in Canada and indeed the world. They probably, with their background and history, may play a very crucial role in us understanding environment and microbiological changes in the cause of autism, and probably a number of other disorders as well. Every Somali population whether they emigrated to the United States or Canada or Scandinavia have all found these diseases increasing, provided the children were born in those regions.3

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Since their first encounter, MacFabe has established a friendship and research partnership with members of the Somali support group in Toronto. During our meeting in 2013, MacFabe told me that a range of disorders including autism, food allergies, “obesity,” certain cancers, and autoimmune disorders are diseases of wealth, secondary to industrialization.4 Referring to the “hygiene hypothesis,” he called them “epidemics of absence.” They are common in Western societies where diet, sanitation, health care, and food production have contributed to a loss in microbial diversity. He believes that Somalis are at risk for autism because of a synergy between their changing diet and environment, due to migration, and the overprescription of antibiotics among their families. I came to find out that MacFabe is not alone in thinking that our depleted “Westernized” microbiome may be a clue to the increasing incidence of autism. After the meeting, I did not know if I had passed muster; it was impossible to tell what they were thinking of me. But I was invited to come back the next evening to present my research interests and meet Adar and Idman. I am certain Idman and Adar were told to be cautious and reserved around me, until they could better assess my intent and sincerity. And yet, Idman welcomed me literally with open arms—­she enveloped me in a warm hug, gave me a huge smile, and immediately launched into a detailed and loving history of her son’s trials with autism. She said, “My son’s generation is the first with autism.” Adar was only slightly more reserved at first. But she also opened up, not wanting to be outdone by Idman. They spoke about all the dietary changes they had experienced in migrating to North America, and the overuse of genetically modified organisms, pesticides, and antibiotics in food production. “Everything is hidden from you in the food we eat,” Adar said. They also spoke of the antibiotics they and their children had been prescribed, and how different their diets and lifestyles were in Canada as compared to Somalia. I could tell that while Idman was the heart of the outfit, Adar was the strategist and warrior. Idman mothers the entire support group, providing them tremendous counsel and loving encouragement. Adar is much more circumspect and feisty. She corrects peoples’ information, educates the support group on how to avoid the mistakes she made, and faces, with caution and reserve, new therapies and theories. Adar often responded to my interview questions by narrowing her eyes, sizing me up, and then chortling. Together they set out to battle autism, and they were kind enough to invite me along on part of their journey. In my first interview with Adar the next summer, I started by asking about her two sons with autism. She told me that changing their diets had changed their lives.

184 / Chapter Six claire: You have two. Two children with autism. adar: It’s tough. The most successful things that I ever did was the diet. claire: They’re gluten-­free, casein-­free. adar: Actually, I went beyond that. . . . Parents, when they start gluten-­free, casein-­free, and they didn’t see any change, they give up. I didn’t. I removed all grain. I went even far as trying to become 100 percent organic. When I stopped feeding grain, that’s when Ali stopped tippy toeing. . . . It’s a lot of work. A lot of work. You can’t give them anything. You have to be careful. At the end, it pays off. Honestly. Ali stopped tippy-­toeing, but it didn’t help his speech. But with Abshir, his speech came back with the diet. And his behavior improved (12 June 2014).

Later, Adar told me that removing all carbohydrates and introducing the specific carbohydrate diet (SCD) changed her children’s behaviors and ameliorated their autism symptoms.5 It also allowed Ali to use the bathroom for the first time. She could finally potty train him after years of dealing with chronic diarrhea. She said she had learned that he had a leaky gut, which was causing inflammation—­an immune response (30 June 2015). I asked what his gut symptoms were. He cannot digest food whatsoever, first of all. Before I change it to no-­carb diet, Ali, he was pooping ten to fifteen times a day and unstoppable. He was pooping undigested food, completely undigested. Plus, the smell, you just throw up and different kind of colors. Most of the time it sticks to his skin. You cannot wash it. You have to take him to the bathtub and scrape it off. It just sticks like glue. He had eczema on his legs completely. . . . When I remember, it just breaks my heart. As soon as I eliminated all [carbs from] his food, it healed his eczema, never came back. The undigested food changed. His poop [had] never been formed, [and after the SCD] it formed (30 June 2015).

In addition to the diarrhea and eczema, Adar struggled to help Ali with his walking. His tiptoeing, a common symptom of autism, was so severe that she could not put him in shoes, because they would fall off (4 June 2015). Ali’s doctor tried to put him in casts to get him to extend his Achilles tendon and walk on his full foot, and after the casts did not work, he was put in leg braces. In the end, the only thing that did work was the change of diet. When Adar cut carbohydrates and milk from his diet, Ali stopped tiptoeing. Ali completely change[d]. Completely, his bowels [were] under control. . . . [He] was sleeping through [the night], the tippy toes all gone, almost . . .

The Microbiome and Postcolonial Critique  /  185 everything stopped. All the symptoms he was having . . . were completely gone (30 June 2015).

Microbiome research resonates with Somali parents because it explains these dramatic results. Gut disorders are incredibly common in children with autism (Mannion et al. 2013; McElhanon et al. 2014). The Somali parents I interviewed talked extensively about their children’s gut problems: the leaky gut, constant diarrhea, poop smearing, and stomach pain. Many saw life-­ altering results when they removed sugar, milk, and carbohydrates from their children’s diets, which convinced them that gut bacteria are a causal determinant of autism. As Idman told me, “If your stomach’s not good, you’re not gonna get a healthy brain or healthy body” (interview, 30 June 2015). The epistemic community in Toronto is structured in dominance by the microbial theory of autism because it reflects and illuminates Somalis’ beliefs: that autism is a Western disease, that migration increased their vulnerability, and that shifts in their diet and health care have altered their disease profiles. For these same reasons, scientists exploring gut bacteria theories of autism welcomed Somalis into their laboratories as research subjects and collaborators. And yet, centering Somali experiences also calls into questions certain presumptions in microbiome research. While gut bacteria theories situate illness in its experiential context, upend classical medical models of an egocentric genome and militaristic immune system, and foreground social determinants of health, they nonetheless rebiologize race at the microbial level. The Somali case necessitates analysis of patterns of inequality and structural models of cause. Somalis are instrumental to the knowledge claims that microbiome researchers are able to make, but centering knowledge production in their diasporic experiences also offers a postcolonial perspective that pushes this field in new directions.

The Multitudes “We see individuals, working their way through life as a bunch of cells in a single body, driven by a single brain, and operating with a single genome. This is a pleasant fiction. In fact, we are legion. . . . Always a ‘we’ and never a ‘me.’ . . . Heed Walt Whitman: ‘I am large, I contain multitudes’ ” —(Ed Yong, I Contain Multitudes, 5).

MacFabe introduced the Somali parents to Emma Allen-­Vercoe, a microbiologist at Guelph University, who conducted a fecal sample study of children whose parents attended the Toronto support group and compared those

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with controls: nonautistic family members living in the same household (Toh 2015). This study contributes to a growing literature illustrating that people with autism, in comparison to neurotypical controls, have unique configurations of bacteria in their guts.6 It was through Allen-­Vercoe that I came to understand the world of gut bacteria, which required a radical ontological repositioning that deterritorialized and decentered my understanding of the body and the causes of poor health. Allen-­Vercoe invited me into her lab, showed me her beloved Robogut, and unmoored my sense of self and the causal forces acting upon me. When Allen-­Vercoe first showed me around her lab, she spoke of the overwhelming attention the genome has received in autism research. She felt the microbiome was much more important but had been largely ignored. She scoffed, “I mean we’re not just human. . . . It’s life-­ism or something to think like that” (31 October 2014). Microbiologists are fond of saying that we are in fact only 10 percent human (Pollan 2013; Collen 2015).7 Rather than being well-­bounded, egocentric individuals driven by one deterministic genome, we contain multitudes: bacteria, fungi, archaea,8 and viruses (Gilbert et al. 2012; Yong 2016). One hundred trillion bacteria live on our skin, in our mouths, and in our intestines, each with its own ecosystem. We have a very symbiotic relationship with these species that call us home—­they protect us from infection, help us digest food, and keep our cells powered. Although throughout our most recent history we have feared and sought to tame pathogenic microbes, fewer than a hundred species of bacteria cause disease in humans, while there are thousands of species of microbes (Allen-­ Vercoe interview, 26 June 2015; Gilbert et al. 2012: 329; Yong 2016: 11). The trillions of bugs that have colonized our skin, mouths, and guts make up the largest proportion of DNA we collectively hold. The metagenome of the microbiome is 150 times larger than the human genome (Gilbert et al. 2012: 327). This “second genome” exerts a powerful force and is much more adaptable than our own genome (Yong 2016: 11; Pollan 2013). While our personal genetic information remains largely unchanged, our microbiome can be reshaped and molded, because microbes can gene-­swap, thus allowing us to adapt quickly to our environment (Ochman et al. 2000; Pollan 2013). This ability to gene-­swap also means that our microbiome reflects our unique biographical experiences. Within it we carry traces of our early development, our diet, the places we have lived, the drugs we have taken, and the people we have met and touched. Whereas most humans’ genomes are similar, our microbiomes are not. When scientists first began studying the microbiome, they hoped to discover a common core of microbes we all share, but now it seems unlikely that such a common core exists (Lozupone

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et al. 2012: 220). Each of our bodies is uniquely shaped by its symbiotic relationship with our microbes, with whom we are in an “ongoing negotiation” (Yong 2016: 63). And yet there are also group similarities. One’s microbial composition is most closely matched by those who share the same household. Neighbors who eat similar foods, engage in collective practices, share community spaces, and meet regularly also have microbial communities that resemble one another (Yong 2016: 252). According to many scientists, the womb is sterile.9 This means that a baby must acquire a microbiome during and after birth. Through vaginal delivery, a baby gains its first microbes from the mother’s vaginal microbiota as it travels through the birth canal and out into the world (Bäckhed et al. 2015). Breastfeeding is another important means of acquiring the prebiotic (food for microbes) and probiotic colonies essential to gut health (Bode 2012). When the child begins eating solid food, crawling, and engaging with the world, its gut slowly picks up new microbes that settle in to make the child their home. It takes three years for the child to develop a microbiome with the diversity of an adult’s. Allen-­Vercoe explained that it is difficult to analyze the microbiome because it operates in synergy with its host, the environment, and other microbes, so that separating out particular microbes to study in a “pure culture” is pointless (10 June 2014). She and her colleagues have developed a set of machines they lovingly refer to as the Robogut (figure 6.1). The Robogut enables them to study microbiota, collected from fecal samples, in environments that more closely resemble the human gut. The Robogut constantly stirs; there is a pH probe and an oxygen center. Allen-­Vercoe and her colleagues introduce a sample, allow it to adjust to the new environment, and make changes in its abundance profile. Then they introduce agents, like antibiotics, to observe the effect. This procedure has its limitations, because there is no way to replicate the relationship between host and microbiome, but there are important outcomes they can study with it. Allen-­Vercoe told me that microbiology and infectious disease disciplines have always sought to resolve illness by identifying the single pathogen that causes a distinct disease. It is incredibly difficult, she said, to reorient our thinking toward the symbiotic relationship between host and microbiome (interview, 31 October 2014). She explained that the clinical trial, the gold standard of medical research, presumes that standardized patients will respond to treatment in similar ways. Microbiome research instead posits a unique individual whose microbial homeostasis reflects her distinctive biography and social location. Microbiologists may need to group people into subsets based on microbial signatures, she suggested, but this would require

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Figure 6.1  The “Robogut” in Allen-­Vercoe’s lab at Guelph University. Photo by the author.

“a complete rethink of how we do everything in medicine” (interview, 26 June 2015). In the world of gut bacteria, dysbiosis caused by the loss of bacterial diversity is the basis of poor health. Lack of diversity in gut microbiota has been linked to Crohn’s disease, ulcerative colitis, inflammatory bowel disease, and “obesity” (Human Microbiome Project Consortium 2012; Lozupone et al. 2012; Toh and Allen-­Vercoe 2015). When the microbiome is diverse, it is stable and resilient, and this homeostasis is difficult to upset. Once the balance has been disturbed, it is increasingly easy to challenge its stability. This concept of dysbiosis made immediate sense to Adar and Idman because of their children’s gastrointestinal problems. They turned toward microbiome research, which also made them more aware of their own microbial health. idman: Our kids, they make us wiser about this, smarter. . . . adar: Looking also [at] our own health. . . . Other people, when they tell me they have gas, reflux, or [vomiting] . . . we help them with what to do. “Take out the trash in your gut. Clean up your stomach!” . . . We also know our GI tract; our intestinal [tract] has accumulated a lot of toxins. . . . You have to clean it. That’s where the disease comes from here [pointing to her stomach]. . . . There’s

The Microbiome and Postcolonial Critique  /  189 so much imbalance in the flora, and fungi and all those things . . . (interview, 8 November 2014).

“Cleaning up” their children’s diets showed them how important gut microbiota are for sustaining healthiness. There are several ways dysbiosis can occur, and Somalis believe they are particularly prone to each of these triggers. First, the Western diet, which is high in fat and sugar and low in fiber, has depreciated the diversity of microbial ecosystems, causing instability. In fact, as this diet is globally adopted through shifts in food production, scholars fear “the extinction of bacterial species that can provide important health benefits” (Lozupone et al. 2012: 228). They call for the collection of bacterial cultures from agrarian societies to stave off this extermination. The loss of microbial diversity within a population over time can lead to what MacFabe refers to as “epidemics of absence,” including chronic diseases (like asthma, food allergies, eczema, type 2 diabetes, and cancer), autoimmune diseases (like Crohn’s and thyroid disorders), and neurological disorders (like autism). In his book Miss­ ing Microbes (2014), Martin Blaser labels this phenomenon the “missing microbiota” (6). Microbiologists argue that, in addition to the Western diet, health care practices common in Western societies are causing widespread gut dysbiosis, including the overprescription of antibiotics and the prevalence of cesarean sections. Although antibiotics save lives and are necessary, they have also been overprescribed, especially to young children. As Allen-­Vercoe explains, “If you do the right meta-­analysis, you can see that those kids that have had . . . broad-­spectrum antibiotic use early in life; it predisposes them to disease later in life” (interview, 31 October 2014). Blaser explains that when they are given to children under the age of two, the gut is “carpet bomb[ed],” allowing resistant bacteria to proliferate (2014: 72). Antibiotics are also used in food production and injected into animals whose milk and meat we consume. In addition, disruptions to our microbiome are more common if our gut has never been fully diversified from the outset. According to scientists in this field, children born via cesarean delivery or who were not breastfed have undernourished microbiomes. Blaser worries that, “with the overuse of antibiotics as well as some other now-­common practices, such as Caesarian sections [and the widespread use of sanitizers and antiseptics], we have entered a danger zone, no-­man’s-­land between the world of our ancient microbiome and an uncharted modern world” (39). Scholars who endorse the hygiene hypothesis argue that when people moved into industrial areas, their contact with farming and farm animals

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was limited, thus leading to more sanitary conditions. The widespread use of hand sanitizers and antimicrobial agents in cooking, cleaning, and bathing has reduced some illnesses, but has also diminished the diversity of species that live upon and within us. In addition, the nuclear family delimits the number of people with whom we come into contact when we are developing our microbiome in the first three years of life, thus leading to less diversity in our resident microbes (Lozupone et al. 2012; Pollan 2013). Immigrants migrating from more agrarian societies are prototypes illustrating these theories. As Lozupone and colleagues explain, “When determining aetiology, immigrant populations can provide an opportunity to disentangle host genetics, geography, and culture because the incidence of some diseases matches that present at the destination rather than the origin” (2012: 223). Many scholars in this field indicate that migration can have a profound effect on a population’s disease profile, including neurological conditions like autism (Sumpton and Gruner 2012). Allen-­Vercoe explained: Now you take someone who’s brought up in an environment where there aren’t as many antibiotics. They do live off the land. There’s no refrigeration. They’re more likely to have vaginal births. They’re more likely to breastfeed. You take that community and you uproot it along with a whole bunch of stress . . . You bring them to a country where the climate’s changed, the food is changed, the way of living is changed. You’re inside a lot more. You’re doing all of those things, that’s gonna have profound effects on the microbiome. . . . Very early in childhood, your ecosystem gets tuned to your genetics in some way. . . . It gets tuned to your lifestyle. It gets tuned to your environment. . . . Now you’re changing that environment. . . . Maybe that’s what precipitates some ecological damage . . .” (interview, 31 October 2015).

Allen-­Vercoe hypothesized that women who were pregnant immediately after migrating may not be affected by this “disconnect.” It might take a few years for the rupture to affect children born in the new country. She insisted that immigration upsets one’s ecosystem, which could influence the microbiome of the infant, since the child’s guts are first colonized by the mother’s microbiota. “You’re a symbiotic animal with your microbiome. You’ve removed one symbiome and replaced it with another, and maybe that doesn’t work quite as well.” Therefore, migration is a risk factor for dysbiosis. Microbiome theories are compelling to Somalis for a number of reasons. First, they challenge the atomized Western medical model and suggest that humans are situated in an ecosystem with which they become attuned, so

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that understanding healthiness requires attending to the social environment and peoples’ biographical experiences. This resonates with certain features of Somali conceptions of the self, which I have discussed in chapter 1. As diasporic populations, Somalis have bodily ontologies that are hybrid and syncretic, and healthfulness emerges from harmonization with the communities they inhabit. They chafe against Western medicine, which overly atomizes the individual and situates dysfunction in an interiorized organic cause. In addition, microbiologists agree that Somalis’ vulnerability to neurological disorders may increase when they are displaced from their original ecosystem and new foods, medications, and technologies are introduced. Finally, the causes Somalis point to, including migration, health disparities, and shifts in food and health production, are given credence within a microbial frame. Somalis’ experiences with autism also demonstrate and confirm theories of the microbiome. And yet, as I will show later in this chapter, analyzing microbial theories from the Somali perspective allows for a critical, postcolonial rereading of microbiome research. Research on the microbiome has radically challenged Western conceptualizations of the self, both within and outside of biology. Gilbert and his colleagues argue that the “biological individual” has been central to Western scientific studies in genetics, immunology, evolution, development, anatomy, and physiology (2012). Each of these subdisciplines conceptualizes human biology with individualistic, atomistic, well-­bounded notions of development and function. These classical conceptions of individuality are fundamentally shaken by the recognition of symbionts and their role in human existence (327). “It is evident that organisms are anatomically, physiologically, developmentally, genetically and immunologically multi­ genomic and multispecies complexes” (331). Sociology and anthropology have also long presumed a particular kind of autonomous, integrated coherence to the body, especially because the body serves as a limit concept for the establishment of social cohesion. The body has either functioned as that which is barred from the social order (instantiating and reifying exclusions on the basis of gender, sexuality, ability, race, and class) or the sovereign frontiers of the social are traced with metaphors of bodily integrity. That which is profane, contagious, and abject is jettisoned from the social order, allowing us to establish strict boundaries for the ego, the body, and civilization (Durkheim 1995; Elias 1994; Douglas 2000; Kristeva 1982). And yet, the microbial body is limitless—­in terms of both its vastness (we contain multitudes) and its defiance of borders. The social no longer poses restrictions on embodiment; the social inhabits us, in the form of trillions of bacterial colonies that can respond to environmental

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cues at a moment’s notice. And these bacteria desire—­they have their own interests, which they pursue both in a mutualist way and against hosts’ interests, often changing our behaviors and sense of self. Such is the case with autism.

A Microbial Theory of Autism Andrew is Ellen Bolte’s fourth child. Born in 1992, he was a healthy baby. He experienced no illnesses of any kind in his first year and a half, and he was reaching all of his developmental milestones. At his fifteen-­month well-­ baby visit, the pediatrician noticed that “his ears were full of fluid,” but Andrew did not have a fever or any other symptoms of an ear infection. He was put on antibiotics. The fluid would not go away. The pediatrician continued to prescribe a series of broad-­spectrum antibiotics. After three ten-­day courses, the fluid went away, but only to return in the next few weeks, when Andrew was prescribed more and even more antibiotics until he had taken six courses of antibiotics in a two-­to-­three-­month period. When the pediatrician finally put him on a thirty-­day maintenance dose, Andrew started to “look drunk.” He would charge at the furniture, bound off of it, and fall to the floor, “laughing like a maniac.” This continued for five days, “and then he started shutting down. . . . If he wasn’t quiet, he was screaming. Over a period of weeks, he just regressed. He quit responding to his name. He quit coming when he was called” (Bolte interview, 8 December 2014). He stopped speaking. He stopped playing with his sister, with whom he had always been close. He developed a gag reflex and refused to eat solid food. He went from being in the 90th percentile on the weight chart to the 10th percentile. He ate the drywall—­and ash, tissue, and paper. He developed explosive diarrhea and vomiting. He began to howl. He would not wear clothes, and he began walking on his toes. In 1994, children were not often diagnosed with autism until four or five years of age. Andrew was diagnosed at twenty-­five months, and the neurologist told Ellen that Andrew “was about the most severe case I’d ever seen walk into my office.” Andrew was eighteen and a half months old when he started to regress, and it only took seven months for him to regress to the most serious case of autism this doctor had seen. Andrew was still taking antibiotics. Ellen finally made an appointment with an ear, nose, and throat specialist who told her to remove dairy from his diet. Immediately the fluid in the ear cleared up—­it was casein intolerance. Ellen thought that perhaps all his symptoms would clear up when she took him off the antibiotics. But the GI issues remained, as did the lack of communication and object fixation. “The damage was done.”

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All the doctors told Ellen that autism “was something your child was born with.” But this was not the case for Andrew, Ellen knew. “He wasn’t born this way, so we have to . . . look for something different here.” The doctors did not have any solutions. “I realized no one was withholding information from me. They just didn’t know.” And so Ellen started to do her own research. She had less than a year of community college training in computer programming, but over the next few years, Ellen taught herself microbiology, neurology, gastroenterology, and immunology. She stayed clear of autism research because she did not want to “muddy up my brain with what they were writing about autism at the time.” She said that she thinks the lack of medical training was helpful because she did not know any limits. If people laughed at her, she didn’t care. “I’m a mom on a mission.” For people in the world of autism, Ellen Bolte is a legend. She joined forces with some leading scientists at the cusp of innovative theories about the microbiome, and together they launched a theory of autism causation rooted in gut dysbiosis. For many, she is the mother of this field of research. When Ellen began conducting research, she started with the antibiotics; she suspected they were the root cause of Andrew’s autism. She began to build a hypothesis. Once antibiotics wipe out the diversity of microbiota in the gut, opportunistic pathogens can become dominant. She suspected that these pathogenic bacteria could produce neurotoxins, which might affect the brain. She read about Clostridia, spore-­producing bacteria. In a hostile environment (when antibiotics are introduced), Clostridia generate spores that are antibiotic-­resistant, so when the antibiotics are halted, the bacteria can repopulate. There are one hundred different species of Clostridia, and tetani and botulinum were the two species of Clostridia that are known to produce neurotoxins. Ellen had Andrew tested, and his tetanus titers “couldn’t be measured. They were off the chart.” She theorized that when tetani (which is in the environment around us) is ingested—­as opposed to being picked up through the skin, as when a child steps on a rusty nail—­they colonize the gut, making the symptoms of infection different. Ellen thought that perhaps the neurotoxins were traveling directly to the brain via the vagus nerve, affecting Andrew’s synaptic development.10 Ellen took this theory to a pediatric gastroenterologist, Richard Sandler, who agreed to put Andrew on an eight-­week course of vancomycin, which is used to treat patients with Clostridium difficile infection because it targets and eradicates the clostridia.11 Andrew was four and a half years old when they started the vancomycin. He responded immediately. He began learning new skills. They were able to potty train him, and his receptive language skills flourished. They could not keep him on vancomycin for

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long periods of time, and when the treatment was stopped, he regressed: his autism symptoms returned. But he retained the cognitive skills he had developed while on the treatment. Sandler was so impressed with the results that he and Ellen contacted Sydney Finegold, a professor of medicine and microbiology, immunology, and molecular genetics at the UCLA School of Medicine, who had conducted research on antibiotics and autism. Together they engaged in a clinical trial with eleven children. These children had all been exposed to broad-­spectrum antibiotics followed by diarrhea, skill deterioration, and the development of autism. They also had Clostridium in their stool. When the children were given vancomycin, 80 percent of them improved. All reported deterioration once the treatment ended, but “the apparent, though short-­term, improvement during treatment . . . is not explainable using current conventional genetic hypotheses alone for autism” (Sandler et al. 1999). The study was published in the Journal of Child Neurology in 1999. Ellen told me she wanted to try another round of targeted antibiotics with Andrew in order to try to introduce language into his skill set. He was still nonverbal by the age of seven, and she knew the window of opportunity for development was closing. She convinced Dr. Sandler to do another protocol with Andrew, because if they could “suppress the toxin formation long enough for him to develop the synaptic connections necessary to support language, he can become verbal” (Bolte interview, 8 December 2014). Dr. Sandler agreed to prescribe Flagyl and oral bacitracin for four months. Andrew did so well and learned so quickly that Sandler extended it for nine months, at which point Andrew was verbal—­speaking in complete sentences for the first time in his life. Andrew also learned to read, write, add, and subtract. However, these antibiotics cannot be used long-­term, and the risk of spreading spores resistant to antibiotics is high. Andrew’s autism symptoms returned when he was taken off the antibiotics, but he retained the skills he had developed. They had administered the antibiotics through a feeding tube in his nose, which his mother inserted at home. It was uncomfortable, but when they finished the treatment, Andrew brought the tubing to Ellen, crying, pleading to receive treatment. “Now, what kid is gonna ask for a nasogastric tube to be shoved up his nose? He knew he felt better on the treatment. . . . He could feel he was slipping away. He could feel it. . . . I think when you treat the gut, it stops all of the toxin from coming to the brain, so the brain becomes clear. . . . Then, once the toxin starts coming back, I’m sure he could feel . . . ‘I’m losing it again.’ . . . Yeah, the gut and the brain, they’re very, very connected” (8 December 2014). Andrew is a young adult now, and he operates at a third or fourth-­grade level of

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intelligence. Ellen continues to publish scientific work on the links between the gut microbiome and autism. Many of the people conducting research in this area believe that gut dys­ biosis is one particular causal pathway for the development of autism. In other words, not all cases of autism can be traced back to gut dysfunction. Rather, a particular subtype of children who were exposed to antibiotics in infancy and then regressed and suffered GI symptoms comprise this phenotype of autism. Somalis in Toronto believe they are particularly susceptible to this type of autism, as I explained in chapter 3, which is why this theory resonates so fully with their experiences. Fatima explained that, while for some children autism is purely genetic, for most Somali children, autism begins in the gut. She admits it is possible that microbes are turning gene proteins on and off, so that there is a genetic component, but “because our children show gut issues early on, we know the autism starts there” (interview, 11 July 2015). Over and over again in interviews, Somali parents discussed how central gut issues were for their children with autism. For example, Yuusuf explained, “My belief is that [my son’s] gut was so bad that he was not getting rid of toxins. . . . With him, it was a complete gut and immune dysfunction. His gut was just a hot mess, and as a result, his immune was affected, so there’s that whole brain-­body-­gut connection. Because of that, nothing else was . . . functioning the way it should be” (interview, 31 May 2015). Yuusuf’s son’s behavior improved once they put him on a strict diet, and then they discovered that his eczema was also linked to his diet. Sado and Abdullahi had a similar experience. They told me that at first, their son was doing just fine. We didn’t have any clue that there’s something wrong with him. He was even learning our language. . . . He would ask me, “Give me milk,” in Somali. . . . He would look straight at you and study you. . . . When he was about eigh­ teen months . . . that’s when we saw decline. Slow decline. Decline. Decline. Decline. He—­to the point he stopped talking. . . . His eating was weird. He wasn’t eating. He was crying a lot . . . and he would drool a lot. He would hit his head on the ground (interview, 10 June 2015).

They did a lot of research and eventually put their son on a casein-­and gluten-­free diet, and “within three weeks, we [saw] a change. I really believe he had a leaky gut and when it got stabilized, he got better. I really believe it was his gut.” Sahra told me that she struggled with her son’s diarrhea long before she even realized he was autistic. He would hold his stomach all the time;

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he was in so much pain. Finally she took away gluten, casein, and carbohydrates, and his stomach got better. She was able to potty train him, and although he is still nonverbal, his behavior has improved (interview, 16 June 2015). Many of the mothers in the Somali support group in Canada told me that their children had been given long courses of antibiotics in their infancy. Fatima told me she had started to suspect antibiotics when a child she had been working with, who was making progress since she had changed his diet, started to regress when his parents put him on an antibiotic. His gluey bowel movements returned and his behavior deteriorated, and she immediately began researching antibiotics as a possible factor in autism development (interview, 10 June 2015). Beyond antibiotic usage, however, Somalis point to various other factors that lead to gut dysbiosis. Their migration had introduced shifts in their diets. In Somalia, they told me, their diet had been more plant-­based and not reliant on GMO technology or pesticides, and the meat and milk had been hormone-­and antibiotic-­free. They had also eaten a great deal of fermented food, especially in the form of anjero, sourdough-­like bread that is a staple in Somalia. They told me that the food they were eating in Toronto is high in fat, high in sugar, and low in fiber. Another issue the parents discussed with me was the overuse of cesarean sections in birthing practices in North America. The lack of vitamin D in a North American climate was also frequently mentioned. Somalis’ experiences, then, lent credence to this theory of autism causation. Many parents also told me that their autistic children, like Adar’s children, seemed to crave carbohydrates and milk. My son consumed incredible amounts of milk—­just ridiculous amounts of milk. The biggest thing that we noticed from when he went healthy to not healthy was his poop. It went haywire to the point where everything he ate basically showed up in the toilet. Completely undigested. . . . He craved carbohydrates—­would only eat them. In ridiculous amounts (Yuusuf interview, 31 May 2015).

According to Derrick MacFabe, there is a microbial reason for this hankering for carbs. Pathogenic gut bugs, he explains, crave carbohydrates, so children eating high-­carbohydrate diets are feeding the bugs that then negatively affect their brain development: “When we eat, we feed microbes. It is possible that these bacteria produce compounds that go back to the brain and alter behaviors, make us eat more of what it takes them to live, and produce

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behaviors that help spread them around” (MacFabe 2009; 2015). Microbes can “hack” our nervous system, releasing dopamine, a chemical that makes us feel pleasure; so it is possible that they are controlling our appetite and desires (Mayer et al. 2014). This link between diet, cravings, and gut disturbances is what attracted Idman, Adar, and Fatima to MacFabe’s research. MacFabe studies propionic acid and its various links to autism. When a strain of clostridium is fed carbohydrates and sugars, it produces propionic acid (PPA). MacFabe has studied several pathways by which an overabundance of PPA might lead to the development of autism.12 When our ecosystems are healthy, the gut properly processes PPA, but if our microbiome is damaged or depleted, then PPA can overcome our system—­leading to autistic behaviors, mitochondrial dysfunction, and inflammation (Allen-­Vercoe interview, 10 June 2014). In his interview, MacFabe repeated multiple times that he is not suggesting that propionic acid causes autism. Rather, it represents a process to heed. “Bacteria are capable of producing compounds that can change behavior in varied dose. . . . Gut metabolites can sculpt brain and behavior and immune system” (17 July 2015). For MacFabe, the focus should be less on particular bacteria and more on the fact that a “deranged ecosystem” is leading to an array of chronic illnesses. “There’s a million ways to cause all these disorders, but they all start in the gut” (17 July 2015). MacFabe also says that one thing he has learned from working with parents is that autism is not a fixed disorder. “ASD originally was thought to be a static, inheritable neurodevelopmental disorder, and our understanding of it is undergoing a major shift. It is emerging as a dynamic system of metabolic and immune anomalies involving many organ systems, including the brain, and environmental exposure” (2013: 52). Emma Allen-­Vercoe also researches how shifts in the microbiome may lead to autism. She has engaged in a variety of studies, including collaborations with Ellen Bolte’s daughter, who is pursuing her PhD under Allen-­ Vercoe’s tutelage. The overall hypothesis of this work is that if the microbiome loses its diversity or is undernourished during development, the result is an “aberrant metablome, which is now interacting with the brain in an aberrant way . . . [which] can affect the way the brain develops” (interview, 26 June 2015). But Allen-­Vercoe insists that the answer will not come in the form of one pathogen, one bacteria, or one metabolite. Rather, autism is likely caused by a pathogenic ecosystem, which may be uniquely configured in each person (interview, 26 June 2015). Ellen Bolte told me she wondered why the medical community failed to recognize the significance of the 1999 vancomycin study (Sandler et al.

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1999). Most critiques of the study focused on how the children had regressed after the treatment, but Ellen said the focus should really be on why they had improved so dramatically while taking vancomycin (interview, 8 December 2014). When we started our interview, Ellen asked me if I had seen The Autism Enigma, which features Ellen and Andrew’s stories, alongside Idman and Adar’s. She bemoaned the fact that the film was never aired in the United States: “It doesn’t support the conventional views, so we avoid telling that. . . . I don’t understand why it’s been so hard to move it in this direction. I don’t know. For the life of me.” Ellen told me that perhaps the excitement surrounding the sequencing of the genome in the early 2000s eclipsed research on the microbiome and on its significance for understanding autism. Emma Allen-­Vercoe told me that one of the reasons she had entered the field of autism was because the vancomycin story had been ignored. In the future, when we look back at this as history, we will be thinking, “Wow, why did we ignore that?” . . . It’s not the best study in the world, but they had very little money. It was very hard to get the ethical review approval. . . . They had a small cohort of kids. They got criticized for it being open-­label, but they weren’t allowed to do it any other way. At some point you’ve got to really see that this was the best they could do with the resources that they had, and absolutely prove their point (Allen-­Vercoe interview, 31 October 2014).

Mainstream research on autism has only recently turned toward the microbiome.13 There is a great deal of excitement in the scientific community about the possibilities of microbiome research. The Human Microbiome Project was provided $170 million from the NIH Common Fund from 2007 to 2016.14 The project has gone through two phases. The first used RNA sequencing to identify a common core of healthy microbes. The second analyzed three cohorts of people suffering from microbiome-­associated conditions (preterm birth, inflammatory bowel disease, and type 2 diabetes). The Common Fund webpage boasts that since 2017, this research has produced more than 650 scientific articles cited more than 70,000 times. There have been a few big hits in autism-­microbiome research recently. There has long been epidemiological evidence linking maternal viral infection during pregnancy to increased risk of autism in offspring (Atladottir et al. 2010). And recent studies are confirming that when germ-­free mice are given a viral infection during pregnancy, the offspring experience alterations in the composition of their microbiota similar to those in humans

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with ASD, and exhibit abnormal behaviors including poor communication, repetition, and deficits in sociability (Hsiao et al. 2013; Choi et al. 2016). Giving these mice probiotics improved their symptoms (Hsiao et al. 2013). For Somalis in Toronto, the microbial theory of autism makes sense because so many of their children suffer from gastrointestinal issues and experienced some relief when carbohydrates, sugar, and milk were removed from their diets. These theories center environmental causal factors and not genetic explanations for the development of autism. Somalis are further attracted to this set of theories because they confirm that autism is indeed a “Western disease,” a neurological effect of migration, shift in diet, and overuse of antibiotics. Somalis in the epistemic community in Toronto share some problematic presumptions about bodily difference and racial essentialism with microbiome researchers, and I explain those below. Building on Somalis’ theory of autism but departing from their biological approach to race allows for a radical critique and rereading of the possibilities inherent in microbial theories.

Race, Place, and Reproduction Although microbiome theories offer an environmental explanation for the high incidence of autism in Western countries, they also advance an essentialized view of difference, which many Somalis share. First, the idealization and romanticization of a premodern era when our guts were supposedly closer to their healthiest essence constitutes an ahistorical account of people living in the Global South. For example, science writer Jeff Leach traveled to Tanzania to sample the poop of Hadza tribesmen and give himself a fecal transplant with a turkey baster in an effort to “(re)become human” (Yong 2014). I imagine the Hazda were tremendously amused by the stunt. Again and again in interviews with scientists and members of the alternative autism community, I heard people insinuate that African agrarian societies were “premodern” because of their fiber-­rich diets, their birthing and breastfeeding practices, and their lack of access to antibiotics. Somalis are also guilty of this faulty logic when they list the idealized conditions of their life in Somalia, including the relative availability of organic food, free of GMOs and pesticides. This is an example of what anthropologist Johannes Fabian refers to as a “denial of coevalness”—­the use of temporal signification to suggest that people living in the Global South exist in a time other than the present (2002). In this case, such a time warp is idealized and held up as a solution to the ills of modernity. Not only do such views falsely presume that Africans live a premodern existence; they also make light of structural

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deficits in basic health care that lead to high maternal and child mortality, spread of infectious disease, and lower life expectancy. MacFabe discussed this ironic paradox in our interview: “Somalis come to a Western society which, let’s be clear, has huge benefits. A world without autism, and that is important, may be a world without antibiotics. Maybe low autism is a world with 50 percent infant mortality” (17 July 2015). In fact, MacFabe refers to autism as “too much of a good thing.” When I pushed him to explain this, he said that the things that make the Western world a more desirable location to live also make its residents more likely to have neurological conditions like autism. In other instances, the implicit presumption is that our microbiome is attuned to our geographic location, and that therefore we should not move around lest we risk disrupting this balance. Somalis echo this logic when they suggest that their bodies are ill-­prepared for life in Western countries. And yet, for many people, and certainly for Somalis, being uprooted is not a choice. These accounts not only presume that people are healthiest if they stay where they were raised, but essentialize belonging and geography in colonialist ways. This is evident in many interviews I conducted. For example, in this account from Allen-­Vercoe: Your microbiome tends to be associated with where you are born and raised, right? If you have a North American type . . . pheno-­microbiome, or you could have a Peruvian type or whatever. It depends on how you were raised, where you were raised, what exposures you had during your childhood to antibiotics, vaccinations, all these other things. It depends on what your diet was, which is also very heavily dependent on your geography. It’s not a surprise. The thing is, your ecosystem develops and then becomes set. It doesn’t surprise me at all that everyone should have an ecosystem that most approximates ecosystems of other people from the same situation they were brought from. The Somalis in Africa have a very different—­their ecosystem in their gut fits in Africa. You bring it here, and it doesn’t fit. It’s struggling. It’s already struggling even if it’s diverse; it’s struggling because it’s not getting the right substrates. It’s not getting the right signals. It’s getting a whole bunch of things which it might not have had before. I’m not surprised that . . . a shift that quick . . . causes problems to some (interview, 26 June 2015).

Here, migration is a health risk because of the prolonged time it takes for our bodies to adjust to new environments. On the one hand, this is a very social explanation for the development of autism because it takes structural

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factors like violent forced migration into account in the determination of illness. On the other, it presumes a natural fit between our bodies and our environments that is reminiscent of xenophobic logics and which ignores the fact that migration is a common global experience. In some ways this parallels genomic research that suggests that the “origin” of genomic ancestry can be found in Africa, the supposed cradle of humanity. Genomes of New World “admixed” populations are compared to Africans’ genomes, ultimately reinscribing race as a biological distinction (Abu El-­Haj 2007; Fulwilley 2008; Best and Byrd 2015). In both of these instances, Africans are held up as a premodern ideal from whom we can learn something about so-­called “modern” societies; and in the process, Africans are demarcated as ontologically, temporally, genomically, and microbially distinct from ev­ eryone else on Earth. While microbiome research denotes a social origin for autism, it also represents autism as a negative outcome of a world in disarray. Whereas neurodiversity activists suggest that autism is a natural neurological characteristic, universal in its occurrence throughout the world and an important identity to be protected, researchers of the microbiome render autism a pathology to be corrected through the diversification of gut bacteria. Microbial theories of autism do, however, help explain the tremendous co-­occurrence of gastrointestinal problems in people with autism, and may indicate therapies to reduce the pain and discomfort many autistic people experience. In her book 10% Human, Alanna Collen insists that the diseases associated with the “missing microbiota” are “diseases of the young, the privileged, and those of immune fortitude, especially women” (2015: 52). But this thinking illustrates another profound aporia in microbiome research: if a focus on microbes means centering social location and experience as causal determinants of poor health, then it should be able to explain health disparities within wealthy countries, in addition to global health inequality. However, it is rarely employed to do that. Quite often, research on the microbiome fails to attend to social difference at all, and completely ignores class, race, ethnicity, nationality, ability, gender, and sexuality (Fortenberry 2013). It also problematically presumes that mice models will translate to humans, despite the much more complicated social and structural conditions in which humans exist. More often than not, when categories of difference like race, ethnicity, gender, and nationality are incorporated into microbiome research, they are treated as biological constants as opposed to social constructs (Fortenberry 2013). Further, researchers largely ignore the precise mechanisms by which social determinants may matter for discrepancies in microbial diversity (Dowd and Renson 2018). Dowd and Renson

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propose several upstream and downstream mechanisms by which social experiences get “under the skin” and “into the gut,” but these are areas of research they propose for further investigation because they have been so fully ignored in current research (2018).15 Microbiome research has the capacity to radically transform our understandings of the body, the self, and our relationship to our social world, including the ways in which inequality is lived, experienced, and embodied—­but only if it incorporates a more complicated theory of structure, contingency, and intersectionality. There are interesting ways in which microbiome research intersects with trends in other arenas of postgenomic science. The next section of this chapter considers the biosocial implications of the microbiome by examining how it pushes us to reimagine the boundaries of the social while nonetheless offering new insight on inequality. Here I provide further examples of how this field problematically reifies social categories and ignores structural conditions. As I explain in the next section, postgenomic scientists often resignify cultural and social constructs as biologically based by ignoring structural inequalities and ideological presumptions and by measuring behavioral differences through metabolic or microbial outcomes. Within microbiome research, reproduction is an important site for either healthy development or the introduction of dysbiosis that can have long-­term negative effects on well-­being.16 Thus, there is an obvious gendered burden of blame allocated to mothers for the possible development of anything from “obesity” and asthma to IBS and autism. Parents sometimes adopt this same logic; for example, Adar told me that mothers have “toxic bodies” (8 November 2015). Part of the problem is that these accounts suggest that weight gain, a viral infection during pregnancy, a cesarean section, or bottle-­feeding may lead to poor health outcomes, but do not offer any recognition of the structural conditions and disparities that shape the likeliness of these “risks.” In addition, when class and race are discussed in this research, even when there is an emphasis on explaining health disparities, Black women in particular are often implicitly painted as responsible for their poor health outcomes. In an effort to challenge the presumption in microbiome research that birth by cesarean section can lead to lifelong poor health outcomes, several scholars have proposed counter theories. One set of researchers sampled meconium and the placenta and found that they contained metabolites, indicating that the womb is not the sterile environment it was once presumed to be (Stout et al. 2013; Aagaard et al. 2014; Wassenaar and Panigrahi 2014). However, this “in utero colonization hypothesis” has recently come under attack: one review article suggests that the hypothesis is supported by weak

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and problematic evidence (Perez-­Muñoz et al. 2017). Other scholars have found that swabbing babies born by C-­section with the vaginal microbes of the mother after birth helps them achieve the same microbial colonization as those born by vaginal delivery (Dominguez-­Bello et al. 2016). But subsequent studies have pushed back on this process of “seeding,” suggesting it is not a cesarean section itself that accounts for poor health outcomes, but rather the common practice of giving women who have C-­sections anti­ biotics after birth and the fact that women who are more likely to have C-­sections are “obese,” less likely to be successful at breastfeeding, and more likely to have given birth at an earlier gestational age (Stinson et al. 2018). Some scholars have challenged the presumption that cesarean delivery is setting offspring up for a lack of microbial diversity, but these alternative theories have not gained traction in mainstream research. As such, microbiome research places a great deal of blame on mothers’ behaviors without any recognition of the social and structural conditions that lead to differential birth outcomes. Mothers are implicitly maligned for putting themselves at risk of a cesarean birth through their prepregnancy and pregnancy behaviors, leading to bacterial impoverishment in their children and higher likelihood of autoimmune, metabolic, and allergy illnesses. Structural inequalities are ignored, and race and class differences are biologized through poor health outcomes. There is very little research on health disparities and the microbiome. Research on reproductive risk and the microbiome reinscribes race in biological outcomes, even when health disparities are a focus. For example, bacterial vaginosis is characterized by a reduction in Lactobacillus sp., which keeps virulent bacteria at bay. Vaginosis can result in preterm birth, greater vulnerability to sexually transmitted diseases, and pelvic inflammatory disease (Dunlop et al. 2015: 3; Onderdonk et al. 2016). There is a higher prevalence of bacterial vaginosis and associated preterm birth in African American women in the United States (Human Microbiome Project 2012; Dunlop et al. 2015; Fettweis et al. 2014). In addition, African American women are frequently disparaged for being overweight, leading to disturbances in the microbiome and negative outcomes for their children (Dunlop et al. 2015: 4–­6). Further, Black women are reported to exclusively breastfeed less frequently than women of other races and ethnicities (Levin et al. 2016; Sordillo et al. 2017). In all of these ways, Black women are subtly blamed for causing microbial dysbiosis (in themselves and their offspring) during reproduction. Such studies reify race as a biological constant divorced from the structural and cultural dynamics that produce racial difference to begin with. Even studies that attempt to make complicated context-­specific

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multivariate analyses (Levin et al. 2016) end by ignoring the fact that race is fundamentally an outcome of structural inequality, and that it always intersects with other stratified social constructs like gender, class, ability, and nationality. As such, these analyses rebiologize race at the microbial level. In sum, research on the microbiome rarely attends to health disparities and often implicitly or explicitly essentializes difference on the basis of gender, race, ethnicity, and nationality by ignoring structural determinants and their intersectional features, subtly racializing behavior norms, and measuring microbial outcomes in a decontextualized way. The next section engages with sociocultural theories on the shift toward “omic” thinking, and considers how theories of the microbiome mirror broader trends in the rebio­ logization of racial difference. Nonetheless, this chapter ends by suggesting that research into the microbiome has broader potential, and that centering Somali experiences with autism allows us to glimpse the possibilities for socializing scientific research on health stratification.

Biosocial Implications “The body is in the social world but the social world is in the body” —(Bourdieu 2000: 152)

Although microbes have been given less sociological attention, microbiome research is part of a broader trend in postgenomic science. From 1950 to 2000, the central dogma of genetic research was that DNA is transcribed into RNA, which in turn is translated into protein (Landecker and Panofsky 2013: 337). The Human Genome Project ran from 1990 to 2003, and it was one of the largest biological research endeavors in history, carrying huge potential for understanding human health (Lappé and Landecker 2015: 159). The hope at the time was to discover a “gene for” all illnesses. The first draft of the human genome was available in mid-­2000, and the final sequencing was complete by mid-­2003. Since this time, hope in finding “genes for” illnesses like autism has waned, as scientists have uncovered the complexity of genomic causality. Scholars label this era “postgenomic,” which is both a temporal and epistemological distinction (Lappé and Landecker 2015: 160). A major feature of the postgenomic shift is recognition that we have fewer genes than we thought (Landecker and Panofsky 2013), and that they are structurally variable and highly repetitive (Lappé and Landecker 2015). Our genetic imprint is now understood to be not timeless and implacable, but profoundly unstable. Genomes are variable between generations and

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within organisms across the life course (Lappé and Landecker 2015). In addition, there is now a broad “interactionist consensus” that genes only matter in context, in relation to environmental triggers and inputs (Landecker and Panofsky 2013). And these environmental impacts matter more at certain times of our lives (especially during early development) than at others. Alongside the complexification of the genome has come an imperative to personalize medicine and molecularize environmental and social phenomena (Darling et al. 2016). Some scholars have also focused their attention on how these shifts in scientific knowledge have been accompanied by broader biopolitical transformations in governance. Nikolas Rose argues that biology plays an increasingly pivotal role in the constitution of subjectivities, the regulation of populations, and the economization of new forms of biocapital (2007). Human life is now understood, governed, and optimized at the molecular level, which results in new ontologies and new obligations to constantly work to achieve our true best selves. Problematically, however, Rose suggests that this new biopolitics of vitality enacts a shift away from normative distinctions in which populations are governed to protect racial and national purity. Rose claims that we are no longer competing and stratifying society on the basis of quality and territory, but are each reduced to our molecular components, managed in the domesticated spaces of family and community (64). Our increasing biologization, Rose argues, challenges rather than reinforces determinism and essentialism (2013). As personhood is increasingly understood somatically, we become biosocial hybrids, composed of a matrix of social and natural symbioses. Against Rose’s optimism, however, I and others have argued that while biopolitics may be shifting, normative governance, evaluative distinctions of the worthiness of life, and racial politics have not been elided by processes of molecularization (Decoteau 2013a; Roberts 2012; Mansfield 2012). Although the postgenomic era offers great promise for moving beyond biological determinism, “omic” styles of thought biologize structural inequalities by transforming the social into molecular biomarkers, rendering treatment a highly technical and pharmacological endeavor as opposed to a structural or environmental effort. One effect is that health and racial inequities are depoliticized. Race has been reconstituted in the postgenomic era. Directly after the sequencing of the human genome, many foretold the end of biological definitions of race. Yet it did not take long for genomics to make race a singular focus (Bliss 2012). Moving beyond color-­blind policies, the new racial genomics seeks diversity and the inclusion of all racial groups in

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sampling in order to promote answers to health inequalities. On the one hand, this has led to the naturalization of social constructs and the obfuscation of structural determinants. In health disparities genomics, a focus on pharmacogenomics drugs and inclusion in sequencing projects have displaced more critical attention to the fundamental causes of poor health (Bliss 2015). In this field, race itself becomes a biovalue for the development of new drugs and markets (Benjamin 2009). On the other hand, postgenomic researchers have been savvy in their implementation of different definitions of race, illustrating race’s malleability and constructedness. For example, gene-­environment researchers have employed both heteroge­ neous and homogeneous definitions of racial difference among and between groups to arbitrate scientific contingencies (Shim et al. 2014). The flexibility in defining race in postgenomic research actually facilitates the durability of racial categories (Pollock 2012; Bliss 2012; Best and Byrd 2015; Panofsky and Bliss 2017). Postgenomic science is also redefining the relationship between the body and the environment. Darling and colleagues (2016) identify three ways this happens: (1) the body becomes the environment, (2) the body is a molecular conduit, and (3) biomarkers are “biological residue” of embodied social processes like stress or discrimination. Landecker and Panofsky illustrate how the environment (as uterus, tissue, or gut bacteria) erodes the exterior boundary of the skin (2013). One of the effects of this corporealization of the environment is an ontological flattening: “Different categories of things in the world are made equivalent by recasting them as different forms of exposure” (2013: 341). I argue that this also entails a sociostructural flattening and depoliticization, such that historically entrenched inequalities and their shaping of everything from behavior to genetic expression are transformed into biological outputs. Often scholars fail to attend to the broader cultural and structural conditions in which scientific research and public health advocacy get enacted. For example, Landecker and Panofsky report on what they refer to as the molecular conduit model (2013: 341). The example they use is a study by Weaver and his colleagues (2004), who found that rat offspring who had been licked and groomed by their mothers experienced reduced stress and anxiety as adult rats, and then went on to lick and groom their own pups with higher frequency. Maternal behavior changes gene expression, which then affects behavior in the future (Landecker and Panofsky 2013: 341). However, this study ultimately confirms, in epigenetic terms, the refrigerator-­mother hypothesis of autism. Mothers who treat their children

The Microbiome and Postcolonial Critique  /  207

with frigidity have cold and anxious children, who in turn treat their own children with a lack of maternal warmth. Given the current cultural trend of attachment parenting, it is highly possible that the scientists in this study held preconceptions about the benefits of maternal attachment that informed their design and measurement of outcomes. Scientists, of course, are not immune to cultural influence. It is these broader normative dimensions of science to which I draw attention. When Nikolas Rose encourages us to bring biology and sociology together to understand the symbiotic and coexistent multiplicities of our vital lives (2013), he treats “biology” as if it were a universal constant instead of a culturally situated and institutionally inscribed system of knowledge (Decoteau 2013a). The problem with the way postgenomic science engages with questions of race and inequality is that it tends to myopically focus our attention on the molecular and ignores the broader sociological context that shapes disparities in the first place (Bliss 2015; Darling et al. 2016). Scholars of the postgenomic era often presume that reconceptualizing biology as mutable produces less deterministic accounts of human difference (Rose 2007 and 2013). However, race reemerges, newly signified, when it is reduced to a molecular output divorced from structural determinants. Mansfield illustrates this process through an analysis of methylmercury (2012). Public health campaigns that advise women not to consume fish while pregnant are couched in race-­neutral language, but in fact normalize white diets. When women of color cannot or do not follow such advice, because of their economic situation and cultural eating habits, their behaviors are blamed and their children’s neurodevelopment suffers. Because public health messaging is presumed to be color-­blind, race only rematerializes in differential developmental outcomes (356). These exact dynamics are at play in gut microbiome research. Women’s behavior during pregnancy (weight gain, food consumption, smoking habits), birth (mode of delivery), and postpregnancy (breastfeeding and home environment) is blamed for differentials in children’s developing microbiomes, instead of the structural and cultural dynamics that cause particular behaviors. We could recognize disparities in housing conditions; the availability of maternity leave; and access to healthy food, vitamins, prenatal health care, breastfeeding consultants, and breast pumps. Instead, we blame women for failing to achieve a healthy pregnancy, or to breastfeed. Structural racism is erased, and race only comes to matter when it is embodied in microbiome composition and subsequent health conditions. This renaturalizes and essentializes racial difference. And yet, centering Somalis’

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experiences with autism allows for the development of more careful sociostructural critique.

Microbes and Postcolonial Critique Trillions of bacteria, viruses, and fungi live on and within us, and these species that have colonized our skin, mouths, and guts not only work in symbiosis with our own organs, but power our cells, ward off threats, extract nutrients, replenish and remodel our protective barriers, and help us develop fully functioning systems. These multitudes are constantly adapting to our environment, and are more in touch with shifts in diet and the environment than our own genome is. Recognition of these facts seriously challenges the long-­held belief that we have one powerful blueprint that commands our design and an immune system that wards off threats from nonself. The signification of our bodies, brains, and cells as autonomous and agentic was always an ideological illusion; dependence has historically been pathologized, especially in the North American context. Gut bugs allow for the emergence of a theory of embodiment that is wholly dependent and relational. Focusing on microbes and the role they play shows us that our healthiness is wholly contingent (situated in time and place), structurally overdetermined (informed by multiple overlapping systems of food and health production, the built environment, cultural beliefs, and traditions), and intersectional. Pitts-­Taylor reminds us that embodiment is always a site of difference and commonality. Embodiment is particular, specific, and local, and it is traversed by broader social patterns and structural constraints (2016: 44). Theories of the microbiome (like other “omic” theories in the postgenomic era) only highlight the former; they seek to situate our bodies in time and place, to make them localizable and readable as traces of our individual histories. But Somalis’ views on the structural conditions of the Western world that contribute to autism also point in the other direction: to practices associated with food and health industries, as well as the ontological effects of navigating racial inequalities in health, education, and disability services. The microbial theory of autism helps Adar, Idman, Fatima, and other members of the Somali epistemic community in Toronto to articulate a critique of Western societies—­a critique that I refer to as postcolonial. First, it confirms what Somalis have claimed since their migration—­that autism is indeed a “Western disease” caused by a series of complex institutional, environmental, and cultural features of life in North America. It suggests that understanding the causes of autism entails moving beyond simple genetic

The Microbiome and Postcolonial Critique  /  209

inheritance. Further, this theory captures the experiences of alienation and marginalization Somalis have faced: forced immigration brought on by a civil war; their resettlement in urban ghettos; and the health inequalities they have faced as poor, Black, Muslim refugees in major Western urban metropolises. Their lack of access to healthy food, their high rate of cesarean sections, and the toxic accumulation they experience by virtue of where they are forced to live all explain how their social marginalization may lead to shifts in their gut microbiota and may contribute to their children’s embodiment of autism. In addition, Somalis point to broader institutional and cultural practices to which their systems are ill-­attuned: the overreliance on antibiotics in both food production and health care, the use of GMOs and pesticides in agriculture, and the cultural shifts in norms surrounding childbirth (cesarean sections, longer hospitalizations, the use of Pitocin). And yet, recognition that certain structural and cultural dimensions of life in Western countries may affect how autism develops and is lived does not require us to follow Somalis and microbial researchers in suggesting that Somalis are biologically distinct and therefore poorly attuned to life in Western countries. The postgenomic era has brought important shifts in our understanding of the relationship between our bodies and the social environment, as well as the significance of racial difference. This potential, however, is obscured in the way the scientific community conducts its research. When scientists engage in this research, they often bring their racial, national, and gendered presumptions with them, and newly reify social difference at the biological level. Taking up the case of autism in the Somali diaspora, however, can refocus our attention on the sociostructural causes of ill health. Bowker and Star argue that analyzing those who “misfit” in existing categorical infrastructure throws the boundaries themselves into stark relief, opening them up for social critique (2000: 302). Centering an analysis on the borderlands calls into question the arbitrary hegemony of the existing order. Rather than rebiologizing race or corporealizing the environment, centering Somalis’ experiences with autism can redirect our analysis toward the embodied effects of migration and structural exclusion. As I discussed in chapter 3, the explanations Somalis adopt to make sense of their vulnerability to autism reflect the epistemic work it takes to navigate their multiple marginalizations. Somalis are excluded from multiple systems of categorization. They must engage in invisible labor to traverse the various borderlands they inhabit (Bowker and Star 2000; Anzaldúa 1987). They work to navigate systems of care that subtly exclude them; they work to make sense of an illness they see as foreign; they work to create embodied bonds with their

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nonverbal children. Somalis work to articulate the multiple conjunctural hinges that link these systems together to overdetermine their exclusion. Somalis’ microbial composition reflects this structural navigation and reveals the complex ways in which autism is materially emergent from this matrix of domination (Collins 1991). What I refer to as a postcolonial theory of autism emerges out of Somalis’ experiences in navigating knowledge terrains and health infrastructure as racialized, religious, and national others.

CODA

Centering the Margins

As I finish writing this book, I am sheltering at home in the midst of the COVID-­19 world pandemic—­an event that is ongoing, and whose legacy we do not yet know and cannot fathom. But it is exceedingly clear that the fault lines of life and death reflect the schisms of race and class inequali­ties in our society. Latinx Americans suffer higher rates of infection, and African Americans experience worse outcomes and disproportionate mortality. Like HIV/AIDS, Ebola, and so many epidemics before it, COVID-­19 illustrates in terrifyingly stark relief, the vast racial and economic rifts that divide neighborhoods, cities, and even countries from one another. Autism is obviously not an infectious disease. Perhaps because of this, its racial fault lines have been less obvious. And yet, racial and class inequalities structure the embodied effects of autism, leading to more intense behaviors and higher service needs. Therefore, just as with the coronavirus, a history of neglect and experiences of dislocation and marginalization are ontologized in ways that make the chances of surviving COVID-­19, or of thriving with autism, less likely for poor and working-­class people of color. In her interview, Fatima Molas talked extensively about the structural inequalities that Somalis face, including lack of proper health care, steady employment, and secure housing. These disparities are exacerbated when one is parenting a child with autism. I wanted to [tell you about] the housing problems that Somalis have. . . . Our biggest, biggest concern is the housing. A lot of these parents that are dealing with this teenager that has autism live in apartments, and we are faced with evictions. . . . If we’re talking about equality, and if we’re talking about health care disparity, we have to fix the basics, the foundation. If the parent

212 / Coda is already—­we’re already [living] under poverty guideline, a lot of Somalis, socioeconomic. That affects the overall health of the family and the child (6 Oc­tober 2015).

In many ways, Fatima told me, autism is a prism through which all these disparities, which can easily overwhelm families, get concentrated. This is a story that has been completely ignored in the broader narrative of autism. In this book, I have illustrated the health disparities that get further entrenched when we ignore the racial dynamics of autism, and the stakes of exposing the lived realities of those who have been marginalized in clinical trials, popular media reports and books, and educational, therapeutic, and disability services. As I explained in the introduction, I have structured this book around two arguments: (1) that Somalis forge epistemic communities united around theories of cause that signify their migration, marginalization, and unique experiences with autism, and which are structured by diverging racial formations and institutional configurations in their sites of resettlement; and (2) that centering an analysis of autism on the margins allows for the development of a postcolonial theory of autism. I feel it only fitting to conclude the book by highlighting these main takeaways. To make sense of Somalis’ rendering of autism, I developed a theory of epistemic communities. Because autism’s referent has never been secure and the field of autism science is vociferous and unsettled, groups of people unite around a shared epistemology and ontology of autism. The “articulatory fixations” (Laclau and Mouffe 1985) that epistemic communities forge partially secure meaning by establishing a definition of autism and an approach to therapy for each group. Somalis in both Minneapolis and Toronto contest the genetic nature of autism, and insist that autism is a “Western disease” caused by a series of environmental conditions common in the Western world, including diet, the overprescription of antibiotics, the use of genetically modified organisms, pesticides and herbicides in agriculture, toxic pollution in cities, an aggressive vaccine schedule, and the overuse of antiseptics. In response, many adopt alternative remedies like specialized diets, vitamin supplements, and probiotics, which they use alongside behavioral and spiritual therapies. Somalis also point out how their experiences with colonialism, racism, and xenophobia make them more likely to suffer from these accumulated environmental conditions, thus rendering them vulnerable to a particular subtype of autism that manifests in severe gut dysfunction (and other serious comorbidities), lack of verbal communication, and cognitive disabilities. The social causes of autism and disparities in diagnosis and therapy settle into the body, ontologizing autism differently for their children.

Centering the Margins  /  213

Somalis’ understanding of autism reflects their social positioning and disposition (Bourdieu 1977). It is a “practical epistemology” (Kroll-­Smith and Floyd 1997) that orients their navigation of services and therapies, while also reflecting their biographical experiences of migration, exclusion, and paradoxical belonging. In addition, forging epistemic communities allows Somalis to politically organize for greater resources and to collaborate with scientists. To break through doxa, to mount a heterodox pushback against the definition of the real imposed by a powerful system of classification—­one so powerful as to seem natural and objective —­requires both material and symbolic resources (Bourdieu 1977). Epistemic communities allow groups to gather the epistemic, practical, and symbolic resources to mobilize against authorized approaches to autism. Throughout its contested history, autism has inspired lay mobilizations and alternative therapies; however, the cases analyzed in this book contextualize how cultural and structural dynamics associated with national belonging and racial inequality operate as causal mechanisms for establishing heterodox health beliefs and practices. Somalis’ global positioning as diasporic communities is reflected in their pluralist approach to autism. Stuart Hall (1994) argues that diasporic identity is traversed by two simultaneous vectors: similarity/continuity and difference/rupture. On the one hand, cultural identity reflects a shared historical and cultural experience; on the other, it is always crosscut by ruptures and displacements. In straddling and hybridizing these two axes of our embodiment, identity is never settled but constantly remade. Somalis’ incorporation of autism reflects this duality. For Somalis, autism emerges out of an ecosystem and worldview that has been destabilized. Localized cultural practices in diet and childrearing are disrupted by migration, and Somalis’ conceptualizations of self are overwritten by new labels they must assume to get services, support, and recognition by the state. In some ways, Western medicalization is experienced as a form of coercive assimilation, but even when Somalis accept new technologies into their health practices, they face discrimination and surveillance of their health practices. Somalis share an unsettling experience of displacement and exclusion that they believe puts their children at risk of developing autism. And they forge a unique and culturally specific response to this rupture by critiquing autism as a “Western disease.” Building epistemic communities allows them to come together in support of one another and to demand attention from a system that has rendered them unknowable. I have also highlighted how Somalis’ “misfitting” into existing categories and their hybrid practices inform their navigation of therapeutic, education,

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welfare, and disability services. Their practices as bricoleurs necessitate epi­ stemic articulation. Their approach to autism is informed by their navigation of structural inequality. As they work to pull the hinges of disparate systems together from the margins, they build a unique epistemological approach to illness. Tobin Siebers suggests that identity is a theory-­laden construction in which knowledge for social living adheres (2008: 15). Marginalized identities are social locations complexly embodied; they not only provide a kind of epistemological roadmap for navigating the social order, but allow for critiquing existing structures. And yet, the communities in Minneapolis and Toronto also come to be structured in dominance by different causal fixations because of the ways in which they engage with local expert communities and are informed by racial dynamics in Minneapolis and Toronto. Therefore, different field dynamics also work on these epistemic communities, pushing them to mobilize around different causal framings. In Minneapolis, Somalis’ vaccine skepticism is informed by multiple experiences of racial othering by medical discourses and institutions, leading to an accumulation of embodied distrust. When public health experts in Minneapolis overly surveil Somalis’ vaccine practices, many Somalis react with defiance. They articulate their exceptional experiences with autism, and perform distinction by holding fast to beliefs in vaccine injury. Because of their multiple experiences of medical apartheid, they do not feel included in the social order. Thus, they do not buy into herd immunity, and they emphasize their exclusion by defying vaccine recommendations and insisting that their unique experiences with autism are caused by vaccine injury. These racial roots of vaccine skepticism have not been addressed in existing scholarship. The epistemic community in Toronto was unable to garner attention from the government and service agencies. As a result, Somalis pursued theories of autism that highlighted their migration as a key dimension of autism risk. Their adoption of theories of the microbiome illustrates how lay groups creatively engage with scientific evidence. Gut bacteria theories reflect Somalis’ experiences and beliefs, even as they reify essentialist views of difference. However, if gut bacteria theories attended to structural determinants, historical contingency, and intersectionality, they could offer a more radically postcolonial approach to health and illness. Through their engagement with microbiome research, Somalis illustrate how diasporic experience is an important site for knowledge production. The concept of epistemic communities builds on existing approaches to patient activism, but also offers a new analytic lens. Rabeharisoa (2003) helpfully summarizes three different kinds of patient advocacy models:

Centering the Margins  /  215

patients become experts and participate in scientific enterprises (auxiliary), activists completely reject scientific expertise or engagement (emancipatory), or activists are equal partners in scientific research (partnership). This last model is similar to the biosocial groups Rose and Novas describe, in which people with illnesses mobilize together on the basis of a shared biological identity (2005). These kinds of lay-­expert partnerships have been integral in genomic autism research (Singh 2016; Eyal and Navon 2016; Navon 2019). Brown and his colleagues have described embodied health movements, which most closely resemble epistemic communities (Brown et al. 2004; Decoteau 2017). Embodied health movements form in response to “contested illnesses,” forge lay-­expert collaborations, and push normalized scientific practice in new directions via knowledge based on embodied experience (Brown et al. 2004). Brown and his colleagues argue that experiences of racial and class discrimination can lead people to adopt structural explanations for health exclusion and establish politicized health identities, challenging the distal causes of poor health (Brown et al. 2003; Brown et al. 2004; Brown et al. 2011). These resemble epistemic communities because they are situated in embodied knowledge, they challenge normative health approaches, and they politicize marginal identities. Unlike existing theories of patient mobilization, however, the concept of epistemic communities captures heterodox relationships with authorized scientific approaches, epistemic contestations that challenge existing field dynamics, and the ontological effects of health disparities and healing practices. Somalis’ epistemic communities point toward structural explanations for illness, and situate dislocation and marginalization not just as experiences that influence group construction but also as important sites for contesting orthodoxy and producing new knowledge. In Minneapolis, Somalis defy vaccinations as a means of protesting medical apartheid. In Toronto, they team up with cutting-­edge scientists who situate illness in geographic locale but fail to attend to structural inequality. Both groups of Somalis challenge existing ways of knowing autism by highlighting racial disparities and centering their diasporic experiences. The theories of cause both communities adopt have ontological effects on how autism is experienced by their children. The Somali case illustrates how peoples’ experiences with illness are situated and contingent—­reflecting biographical experiences and manifesting in different embodied realities—­and are informed by broad patterns of structural inequality. Theories of autism’s construction must attend to both dynamics. Epistemic communities also offer Somalis resources for building community, surviving disparities, and forging radical political illness narratives.

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Somalis’ insistence that they contend with autism in unique ways inspires them to seek out scientific collaborations that situate their experiences as the basis of new knowledge production, battle against racial disparities in diagnosis and treatment, and protest medical apartheid. In addition, the support groups help Somalis learn how to live with and domesticate autism. As Somalis bring autism into their worldview and everyday experiences, they reconfigure its classification and politicization. Centering the story of autism on the margins, among Somalis in Minneapolis and Toronto, allows me to develop a critique of the racial, economic, national, and cognitive hierarchies that have been subtly inscribed in normative narrations of autism. This book illustrates how autism became a white disorder, and how its institutions and services still privilege wealthy white parents and people with less disabling forms of autism. More than that, however, the book argues that orthodox ways of knowing autism are problematic because they ignore the sociostructural conditions that lead to poor health. Mainstream explanations that insist autism is a “natural kind,” a genomic abnormality, naturalize and individualize a condition that is lived very differently by populations, depending on their social location. Scientific categories for organic illness are meant to reflect what Plato called the proper “carving of nature at its joints” (Cobb 1993). But science has a tendency to ignore the fact that cultural, structural, and ideological conditions have also carved up the world, rendering particular populations vulnerable to poor health conditions, lower life expectancies, and higher levels of distrust and discrimination. Somalis’ theories of autism bring this broader perspective into focus. A postcolonial theory of autism highlights the structural and epistemic conditions in the West that construct and institutionalize autism as an illness of privilege, and it exposes how disparities have ontological effects on the way autism is lived.

A pp e nd i x o n M e t h o ds

My analysis of epistemic communities centers Somalis’ beliefs about autism, drawn from their experiences of migration, racial exclusion, and religious conviction, but it also attends to how these shared epistemologies are both informed by and push back against the health care systems, racial formations, knowledge politics, and refugee policies in Canada and the United States. My methodological approach to qualitative research draws from the extended case method and from critical realism.1 Both approaches center an analysis of complex “events.” The event in my analysis is Somalis’ construction of epistemic communities to make sense of their vulnerability to autism. Like practitioners of extended case method, I “extend out” from this case by excavating the structural conditions that shape its emergence and development (Burawoy 2009). I compare the communities in Toronto and Minneapolis to illustrate how local and national conditions have shaped the content and form of their political and epistemic mobilizations. I also pay heed to the structured relationship between the knower and the known, situating my own positionality in the analysis of the event. From critical realism, I illustrate the contingent and conjunctural nature of causality: events are overdetermined by an array of historical and structural dynamics (Steinmetz 2004). Combining insights from these approaches allows me to extend beyond them by illustrating the mutually constitutive relationship between structure and agency. Because subjects sit at the conjuncture of a series of interpellating systems, they can exercise agency in navigating the systems that inform and shape their actions, and can also shift the content and form of those structures over time. I engaged in data collection from 2012 to 2016, including three years of ethnographic observation, nine focus group discussions (n = 47), and 204 in-­depth interviews. I conducted interviews with Somali parents of children

218  /  Appendix on Methods

with autism (n = 54; 27 in each city), health providers, government officials, policy specialists, educators, and social workers who provide services to children with autism in Toronto and Minneapolis (n = 142), as well as key leaders and scientists associated with alternative autism organizations (n = 8). In addition, I collected newspaper archives from four major news sources in Minnesota (Star Tribune and St. Paul Pioneer Press) and Toronto (Toronto Star and Globe and Mail) from 1991 to 2015, to capture the racial lenses with which Somalis have been interpreted, and to document the differential racial systems in Canada and the United States. I also collected archives on mental health service delivery, on refugee and resettlement policies, and on autism advocacy and service provision in both Minnesota and Ontario. In addition, I conducted ethnographic observations at key alternative autism conferences, including three Autism One conferences and one Medical Academy of Pediatric Special Needs conference. Finally, I conducted three months of ethnographic observation in a pre-­kindergarten special education class for children with autism and in an applied behav­ioral analysis center. I did not interview Somali children or youth with autism. Most autistic children of the parents I interviewed were under the age of eighteen, and many were nonverbal. I did meet and engage with many of the children whose parents I interviewed; however, my project focused on the epistemic communities that parents forge to make sense of and mobilize around autism. My approach to ethnography and my responsibility to my subjects are informed by a long tradition in postcolonial and transnational feminist scholarship of centering the subaltern experience. Such an approach requires providing a detailed cartography of my subjects: highlighting the contingency of their social locations and their subjection to various and often contradictory relations of rule, which conjuncturally inform their interpellation but do not dictate their actions (Mohanty 2003; Smith 1987). I seek to illustrate how Somalis’ navigations of multiple systems of domination are articulated with their ideologies of autism. This gives Somalis power, as a group, to push back against authorized definitions of autism and against the tremendous health disparities they face in accessing services for their children. My approach attends to the structural dynamics that lead to their unique views, and how those in turn offer a structural critique of the existing system. I shared my analysis with some of the leading figures involved in the research. I only hope that the participants whose stories I tell here see themselves faithfully portrayed. I take full responsibility for any shortcomings in my analysis.

A ckn o w l e dgm e n t s

Numerous generous people have made this book possible. I could not have written it without the participation of the incredible parents I met in Minneapolis and Toronto. They dedicated their time and attention to this project in order to render their children with autism visible to the broader public. I only hope that by recentering the story of autism on the margins and unveiling the subtle and blatant forms of racism, xenophobia, and ableism that Somali children with autism experience, this book contributes to their struggles for recognition, services, and respect. In particular, I thank Adar Hassan and Idman Roble, who spent countless hours sitting for interviews, organizing focus group discussions, and connecting me with other parents and service providers in Toronto. They also sometimes served as impromptu translators. Adar and Idman are incredibly fierce women whom I greatly admire. Also in Toronto, Fatime Kediye, Emma Allen-­Vercoe, and Derrick MacFabe spent a great deal of time and energy helping this project along, making connections, and explaining the intricacies of microbiology to me. Tina Gandhi and Adrienne Perry provided me with constructive advice and helped me gain access to Somali parents outside the Toronto support group. Their assistance was instrumental. Mahad Yusuf was also incredibly generous and welcoming. In Minneapolis, Amira Ahmed and Miriam Egal opened doors and provided essential help. Amira served as a full-­time interpreter, but also as a collaborator and research assistant. She came up with inventive strategies to connect with parents, and donated her office space for interviews and focus group discussions. Miriam provided some of my first insights into Somalis’ experiences with autism, and her advice and connections were indispens­ able. Anne Harrington was an excellent source of information and sat for numerous interviews with me, amid all her other duties. Barb Dalbec, Lynn

220 / Acknowledgments

Bahta, Asli Ashkir, and Sara Chute also helped this project along in important ways. Awa Abdi, Liz Boyle, Michael Goldman, Doug Hartmann, Enid Logan, and Ron Amizande extended us an academic home in Minneapolis and invited us out for lunches, dinner, and drinks. I received funding from a number of agencies over the course of the project’s development. The pilot project was funded by the Office for Social Science Research at the University of Illinois at Chicago (UIC), and by the American Sociological Association’s Fund for the Advancement of the Discipline. Then, the bulk of the data collection was funded by UIC’s Institute for Research on Race and Public Policy and the National Science Foundation. Thanks to Tracy Sikorski, who saw promise in the project from the outset and helped manage all of the grants. I was incredibly lucky to have two absolutely outstanding graduate research assistants work on this project: Paige Sweet and Meghan Daniel. I would not have collected the breadth of data, received federal funding, or finished this project without their assistance. Paige was a part of this project from its conception—from early interviews and grant writing until it was ready for critique. Paige’s insight and unparalleled acumen have contributed in no small way to the project’s completion and success. Meghan put up with my unending quest for more information with grace and determination; her intrepid sense of humor often gave me a boost when I was feeling mired in the slog of research and writing. I must also thank Kelly Underman, who collaborated on an earlier autism project with me, and brought news of autism in the Somali community of Minneapolis to my attention at the outset. Thanks to Cal Garrett, who helped clean and organize the references and charts in the book, and who also read and gave insightful comments on several chapters. A whole crew of undergraduate research assistants worked on various aspects of this project, and I would like to thank each of them for their tireless attention despite the tedium of the work: Elizabeth Garcia, Jasmine Maldonado, Gaby Valentino, Carlinthia Cox, Fiona Sembiring, Onyeka Ume­­adi, Ahissa Bustos, Nancy Garcia, and Angelica Martinez. All the students who participate in the Science, Knowledge, and Culture reading group at UIC deserve my recognition, respect, and admiration for read­­ ing whatever I suggested, providing me tremendous insight along the way, and buoying my spirits. I extend warm appreciation to Alondra Nelson, Stefan Timmermans, Chloe Silverman, and Anna Kirkland for participating in a book workshop on the project in 2019. Despite my initial reluctance, which they suffered without complaint, I followed their excellent advice; and the book is so

Acknowledgments / 221

much stronger because of it. Meghan Daniel, Kate McCabe, and Andy Clarno also provided valuable support and encouragement during the book workshop. Other readers and colleagues who supported me along the way include Jennifer Singh, Owen Whooley, Aaron Panofsky, Claudio Benzecry, Lorena Garcia, Carol Heimer, Judith Farquar, Akemi Nishida, and Mariana Craciun. I appreciate the comprehensive advice I received from four anonymous reviewers for the University of Chicago Press. I must also thank Isaac Reed and Monika Krause for always challenging me, but in the most encouraging way. They have both offered indispensable intellectual and personal support to me over the many years I have worked on this book. I wrote large portions of this book during the WriteOuts (week-­long writing-­intensive retreats) sponsored by the Institute for Research on Race and Public Policy, and while on fellowship at the Institute for the Humanities. Thanks to Amanda Lewis, Faith Kares, Iván Arenas, Amanda McDonald, Delaina Washington, Linda Vavra, Mark Canuel, Nadine Naber, Dave Stov­­all, Stephen Engelmann, Tony Laden, and Hayley Negrin for providing protected writing space and support, which nourished my productivity. Thanks to Gil Eyal, who read the entire manuscript and gave me extremely detailed advice that greatly strengthened the analysis. Paige Sweet and Andy Clarno read each chapter multiple times. They pushed me to fortify and extend my analysis, always with an eye to my own unique style and voice. Their trust in me was invaluable. This book started off under the editorship of Douglas Mitchell and Kyle Wagner at the University of Chicago Press, who understood and nurtured my scholarship. I miss Doug as an editor and an intellectual mentor. His legacy is unmatched. Elizabeth Branch Dyson took over this project without batting an eye, and has ushered it through with dedicated attention and constructive insight. Mollie McFee has stewarded the book with care. I also want to thank Renaldo Migaldi for his manuscript editing, and Derek Gott­ lieb for his work on the index. Kevin Hosseini painted the beautiful scene of an Iranian silk bazaar on the book’s cover. I found Kevin’s work through the Art of Autism nonprofit; and his mother, Debra Muzikar, was kind enough to give me permission to use the image for the cover. My family has been an incredible source of comfort and inspiration. From her vast experience as an early childhood educator who worked extensively with autistic children, Nancy encouraged my early interest in this project, and thoughtfully engaged with me about my findings along the way. Liza, Alex, Mirabelle, Jim, Jenna, Kevin, Kenzie, Grant, Charlie, Drew, and Lucy provided much needed distractions, good food, lots of laughs,

222 / Acknowledgments

and warm hugs when I needed them. My parents, Pam and Jack, are tireless, dedicated, and proud supporters of everything I do. Watching the parents in this study care for their children made me appreciate my own parents’ skills, philosophy, and selflessness. I am a better scholar, parent, and person because of them. Over the course of writing this book, I became a mother. It is a world-­ altering experience. The parents I interviewed for this project provided me with an amazing example of what it means to be a mindful and devoted parent. I did not get this book done as quickly as I had hoped, but I wouldn’t trade one minute spent with my son. I dedicate this book to Felix, whose infectious laugh, playful personality, inquiring mind, and loving empathy got me through the long, drawn-­out process of writing and rewriting. And to Andy, who was there through it all—­talking sense, pushing me further, never doubting, and loving absolutely.

Notes

In t r o d u c t i o n

1.

Subjects whose proper names are used consented to the use of their names. All others are given pseudonyms, or are referred to anonymously. 2. Ali, Adar’s oldest son with autism, was born in 1996. Her younger son with autism, Abshir, was born in 1999. She also has a daughter born in 1995. 3. For more information on the diagnostic criteria in the Diagnostic and Statistical Man­ ual 5, see the CDC website: https://www.cdc.gov/ncbddd/autism/hcp-­dsm.html. 4. All the quotes in this introductory story are from an interview held with Adar on 12 June 2014. 5. There is some evidence that children with autism experience more frequent ear infections (Niehus and Lord 2006). 6. Walking on tiptoes is a common symptom of autism. 7. Genetic influence extends beyond heritability. There is substantial scientific evidence that genetic mutations, which can occur over the course of one’s life, are involved in autism causation. For example, de novo mutations that disrupt the function of genes have been found in older men’s sperm, which many scientists believe account for higher rates of autism in offspring of parents of advanced age (Lee and McGrath 2015). It is possible that environmental factors may also trigger de novo genetic mutations. 8. The ADDM is a methodological approach used by the CDC. The CDC collects data from approximately ten to eleven communities across the country every four to five years. Information is gleaned from health and educational records for children aged eight (representing about 8 percent of the population of that age). Age eight is chosen because most children will have been diagnosed or receive developmental disabilities services in schools by that age. It is from this data that national surveillance estimates are calculated. For example, the most current national estimate of prevalence of autism is one in fifty-­nine children, based on surveillance data from 2014; however, there is a great deal of variation across communities and states with regard to diagnosis. Mandell and Lecavalier critique this approach to estimating prevalence of autism (2014). They suggest that educational and medical professionals are influenced by politics, resources and awareness when they diagnose and document ASD. Mandell and Lecavalier suggest the CDC captures professionals’ biases, which then impacts prevalence rates (2014).

224  /  Notes to Chapter One 9. This was a project jointly sponsored by the CDC, the National Institutes of Health (NIH), and Autism Speaks. It was carried out by researchers from the University of Minnesota and the Minnesota Department of Health. Experts screened, abstracted, and reviewed school and medical records, which included not only children with official ASD diagnoses but those who were reported to have behaviors consistent with ASD. Findings from the survey can be found at http://rtc.umn.edu/autism/, and in Hewitt et al. 2016. 10. https://www.cdc.gov/features/new-­autism-­data/index.html. There are also gender differences in autism diagnoses. The 2018 CDC study indicates that boys are four times more likely than girls to be identified with ASD (Baio et al. 2018). Many scholars criticize existing accounts that essentialize gender distinctions, and point to the impact of socialization on ASD gender disparity (Bumiller 2008; Cheslack-­Postava and Jordan-­Young 2012; Gillis-­Buck and Richardson 2014). 11. See, for example, the special issue of International Organization 46, no. 1 (1992). 12. A comprehensive history of autism can be found in Nadesan 2005; Eyal et al. 2010; Silverman 2012; and Silberman 2015. 13. Many scholars have critiqued the use of the term postcolonial because it does not capture or properly describe the structural (and especially economic) inequalities that stratify nations and populations, because it implies that colonial relations have ended, or because it reifies (as opposed to disrupts) divides between the metropole and periphery (Shohat 1992; Dirlik 1997; Chibber 2013). Recognizing this semiotic baggage, I nonetheless choose to employ the term for three reasons: (1) to signal that I build on the theories of Paul Gilroy, Stuart Hall, Frantz Fanon and Edward Said; (2) to pay heed to structural and cultural shifts produced by anticolonial struggles and the global adoption of post-­Fordist neoliberal restructuring; and (3) to highlight the lineage of poststructuralist thinking which engendered an epistemic rupture that decentered binaries and attended to multiplicities. In addition, such an approach builds on the call for sociologists to adopt postcolonial frameworks of analysis (Go 2016). 14. I am indebted to Julian Go’s Postcolonial Thought and Social Theory (2016) for reminding me of this particular insight from Said. 15. The term “neurodiverse” was first coined by Judy Singer and Jim Sinclair (Casico 2012). Sinclair’s 1993 speech at the International Conference on Autism, called “Don’t Mourn for Us,” and the work of his organization, Autism Network International, strongly oppose the curative approach to autism taken by many parent organizations (Boundy 2008; Casico 2012). See Savarese and Savarese 2010 for a detailed history of the movement. C hap t e r 1

1. Transnational “conference calls” operate like radio stations, and people can choose different “channels” (e.g., politics, health, child rearing, religion). People mostly participate by listening, but one can request to speak or ask a question. In interviews, many Somalis told me that these calls were important because they allowed refugees to remain connected to Somali politics and culture. Many respondents reported information about autism they had learned through participation in these calls. 2. Kapteijns 2013 and Abdi 2015 provide more comprehensive histories of Somalia. 3. This woman did not have a child with autism. As I explain later in the book, one mechanism I used to recruit participants in Minneapolis was having personal care attendants (PCAs) refer parents of children with autism for interviews. Unfortunately, the PCAs were not always clear on the diagnoses of the children for whom they cared, so this woman was erroneously referred for an interview. It took some

Notes to Chapter One  /  225 time before I realized that her son was not autistic but had physical disabilities stemming from this fall. This woman did share her migration story with me. 4. The United Nations defines a refugee as a person unable or unwilling to return to their country of origin or nationality because of persecution or a fear of persecution based on race, religion, nationality, political opinion, or membership in a particular social or political group. 5. In 2008, a study was published indicating that “fraud” was common among African refugees seeking resettlement in the United States through family reunification (Esbenshade 2010; Shah 2013). As a result, the family reunification program for Somali refugees was suspended for four years; and when it reopened, DNA testing was mandatory (Shah 2013). Only immediate family members (children or spouses) of the US sponsor were considered legitimate applicants. Many Somalis argue that this imposes a Western definition of family on Africans for whom grandparents, siblings, and extended relatives are often considered “immediate” family (Abdi 2015: 53). A similar process has occurred in Canada, and now all family documents must be confirmed with DNA testing. Residents and citizens can only sponsor single depen­ dent children under the age of twenty-­two, based on Eurocentric assumptions about the appropriate age for one to live independently (Spitzer 2006). 6. To apply for US refugee status (the process is similar for Canada), a person is first referred to the US Refugee Admissions Program (USRAP) by UNHCR, a US embassy, or an NGO in the country of original asylum. A resettlement support center, contracted by the Department of State, reviews all files and submits them to the US Department of Homeland Security (DHS), which conducts a series of security clearances including consular, law enforcement, and intelligence inspections, as well as fingerprint screenings (USCRI 2015). A resettlement program officer in Minnesota told me that refugees are required to complete a family tree, and that a member of the Refugee Corps travels around to gather information on the applicant, figuring out how much of their story is true. Any discrepancies can lead to dismissal from the process. The applicant then sits for an interview in which they are also screened for accuracy. If there is any confusion over the person’s name, which is quite common in Muslim countries, then each and every spelling of that name is checked and cross-­checked. The process is exhaustive, and very few people make it through (interview, 30 November 2015). Once the applicant is approved, the DHS holds an interview and, if refugee status and clearance is secured, it refers the applicant to the International Organization for Migration for a medical screening (USCRI 2015). The refugee is then assigned to one of nine resettlement agencies in the United States (USCRI 2015). 7. Refugees are eligible for federal refugee benefits for five years and can also receive government assistance through Temporary Assistance for Needy Families (TANF), the Supplemental Nutrition Assistance Program (SNAP), Medicaid, and the Children’s Health Insurance Program (CHIP). 8. Accepted refugees are eligible for all benefits available to permanent residents in Canada. 9. Canada was awarded the UNHCR Nansen Refugee Award in 1986 (Hamlin 2014). 10. The Canadian Charter of Rights and Freedoms is the bill of rights in the Canadian judicial system; therefore, a “Charter challenge” is a court case regarding basic rights and freedoms for all citizens. 11. Eighty-­six percent of Minnesota is white and 7.5 percent of the state is foreign-­born (Chambers 2017: 57). The Twin Cities are home to 80 percent of the state’s foreign-­born population. In 2016 the Somali population in Minnesota was 46,300 (MSDC 2016).

226  /  Notes to Chapter Two 12. The 2016 census indicates that 29.1 percent of Ontario is foreign-­born and 29.3 per­­ cent of the population is a visible minority (Ontario Ministry of Finance 2016a, 2016b). There are 22,680 people in Ontario whose mother tongue is Somali (Statistics Canada 2017). 13. The World Health Organization, for example, reports that one in three Somalis has a mental illness, which is the highest rate in the world; but it does not explain how these statistics were gathered or what definitions were used (2019). In a BBC report, psychotropic drugs used in one hospital are said to be literally “liberating Somalia from its backward beliefs” (Hooper 2013). And the New York Times suggests that Somalis need to “break the chains” of mental illness (Carey 2012). 14. In 2010, 60.7 percent of Somalis in Minneapolis lived in subsidized housing [compared to 33.7 percent of African Americans and 32.8 percent of Hmong (Abdi 2015: 207)]. But more recently, queues for subsidized housing are five to ten years, and there is a dearth of housing for the poor in Minnesota. In 2011, 20 percent of Toronto residents spent more than 50 percent of their income on housing (Bryant et al. 2011). Somali refugees were originally banned from accessing subsidized housing until a group of Somali women sued the Toronto Housing Authority in 1991 (OCASI 2016: 5). But queues for subsidized housing have gotten extremely long and rental prices have risen, making housing exceedingly difficult to acquire for new immigrants (fieldnotes, 6 May 2015). This means that recent Somali immigrants are moving further and further outside of Toronto (interview, 10 June 2015). 15. In 2005, 57 percent of Somali Canadians lived below the low-­income cutoff (compared to 11 percent of the entire population), making Somali Canadians one of the most disadvantaged groups (OCASI 2016: 5). According to 2006 census data, only 13 percent of Somali Canadian adults have a university degree, and 25 percent of Somali-­speaking students dropped out of high school (OCASI 2016). According to the American Community Survey of 2010, the median income for Somali families in the US was $19,061—­much lower than that of other racially marginalized populations (Chambers 2017: 141). In Minnesota, 34 percent of the adult Somali population do not have a high school diploma or GED (MSDC 2016). C hap t e r 2

1.

Since the Omnibus Budget Reconciliation Act (of 1981) made institutionalization illegal, states can use Medicaid Home and Community-­based Services (HCBS) waivers to expand Medicaid plans to people “at risk of institutionalization” (Leslie et al. 2017). According to a study from 2017, there were fifty HCBS waivers in twenty-­nine states that explicitly targeted the ASD population, and Medicaid served as many as 45 percent of US children with ASD (Leslie et al. 2017: 57). However, there was substantial differentiation between states in what was covered and at what cost (Velott et al. 2015). Leslie and colleagues found that, while these waiver services decreased unmet needs for children with autism, they overwhelmingly benefited children living in households with higher incomes (2017: 62). Within the state of California, Angell, Frank, and Solomon (2016) found vast discrepancies in per-­person spending on ASD in different regions: areas serving low-­income Latinx and African American communities with ASD spent less per person than areas with wealthier families, thus illustrating that disparities exist not just between states but within states. States that use Medicaid waivers cover more services and at higher rates than states that have adopted insurance mandates to cover ABA (Wang et al. 2013).

Notes to Chapter Two  /  227 2. In the 1940s and 1950s, B. F. Skinner developed operant conditioning, in which behaviors are taught through positive and negative reinforcement. Language is a major focus because it is a “stimulus function” (Silverman 2012: 109). 3. I only provide a cursory history of behavioral therapies. Other resources include Silverman 2012 (chapter 3); Eyal et al. 2010 (chapter 7); and Eyal 2013a. 4. Other prominent approaches include TEACHH (treatment and education of autistic and related communication handicapped children), developmental, individual-­ difference, relationship-­based (DIR)/Floortime, the Early-­Start Denver model, and the SCERTS (social communication emotional regulation transactional support) model. There are also different kinds of ABA; for example, the Lovaas approach differs in small ways from the verbal behavior approach (Winnega interview, 6 June 2016). 5. A recent study found that children with more disabling forms of autism have been underrepresented in behavioral therapy studies and overrepresented in drug treatment studies (Stedman et al. 2019). Therefore, it is not clear how successful ABA is for children with more disabling forms of autism. However, this study also illustrates how children with higher service needs are often excluded from accessing therapy. 6. In the case of Minnesota, the Medicaid-­backed insurance provider is called Medical Assistance, or MA—­but for clarity, I am simply referring to it as Medicaid. 7. Specifically, in this case, they purchase fee-­ for-­ service Medical Assistance, or MA-­TEFRA (Tax Equity Fairness and Responsibility Act). 8. The reasons for this are complicated, but it came about because families were initially denied ABA services through CTSS; and when they appealed, they were given coverage only through this exemption, which then became de facto policy. 9. In fact, they were required to sign up for fee-­for-­service (FFS) MA to get ABA coverage, even though they were already eligible for MA through their income. 10. This became the subject of a drawn-­out court case. See Lerner 2011a for details. 11. There are many sources I used to explain the Autism Benefit. The MDHS provided an archive of documents on their website, including meeting minutes from Advisory Council meetings, focus group discussions with clinical professionals and with parents and advocates (MDHS 2016). I also conducted a series of interviews with Anne Harrington, who was the state autism planning director at the MDHS from November 2012 to March 2016. The DHS legislation approving and amending the Autism Benefit is available at https://mn.gov/dhs/assets/14–­08-­spa_tcm1053–­270738.pdf. 12. This is not exactly an IQ distinction, but rather a question of the expression and complex nature of children’s symptoms (interview, Harrington, 2 November 2015). 13. See Penner 2016 for information comparing the configuration of services for autism across Canada’s provinces. 14. In both countries there are other services, such as respite care and school transition services, that children with autism and their parents can access. 15. Setting 5 includes a segregated school with a residential placement, but this is not a common placement for school districts. 16. For example, the Countering Violent Extremism program, introduced in 2014, authorizes school employees and teachers to inform on students whom they deem to be “at risk” for radicalization (Patel and Koushik 2017). 17. Frazier et al. 2011; Mandell et al. 2008. 18. These include direct care staffing, respite, vocational skills, employment assistance, environmental modifications, and assistive technology.

228  /  Notes to Chapter Three C hap t e r 3

1.

Children are being diagnosed at earlier ages, and the CDC suggests that autism can be detected at eighteen months or earlier. Developmental concerns are discussed at well-­baby check-­ups at nine, twelve, and eighteen months. The Modified Checklist for Autism in Toddlers (MCHAT) is given to parents at the eighteen-­month well-­ baby visit, but it is also available online at https://mchatscreen.com/wp-­content /uploads/2015/09/M-­CHAT-­R_F_Rev_Aug2018.pdf. 2. Goin-­Kochel et al. 2014 and Wiggins et al. 2009 found similar results. 3. For example, Ozonoff and colleagues (2010) argue that the most widely used and recommended data collection method, parents providing developmental history, fails to provide a valid assessment of the slow decline in social communication that can be observed prospectively. 4. Kanner explained: “We find almost invariably that the children have been brought up in emotional refrigerators in which there was extremely little fondling and cuddling, in which the infants have been treated more as coldly watched and preserved experiments than as human beings enveloped in the warmth of genuine parental affection” (1948: 391). 5. Single nucleotide polymorphisms (SNPs) are single mutations at an individual base pair (nucleotide) that aid in discovering common genes contributing to a particular disease (Singh 2016: 52). SNPs have to do with sequence variations. They are associated with a range of psychiatric disorders, including ASD, ADHD, bipolar disorder, major depressive disorder, and schizophrenia (Cross-­Disorder Group of the Psychiatric Genomics 2013). 6. For detailed information on these procedures, see Silverman 2012: 138. 7. A1B1A2B2 is a psychological design used to determine whether an intervention is effective in changing behavior. The baseline of the behavior is established at A1, and the intervention is introduced at B1. Then the intervention is removed, a new baseline is established at A2, and the intervention is reintroduced at B2. In this way, the subject is his or her own control. 8. See http://www.surveygizmo.com/s3/1329619/Autism-­Treatment-­Evaluation-­Check list-­revised. 9. A number of scholars have pointed out the ways in which parents of children with disabilities gain intimate bodily knowledge and expertise from their experiences of parenting a child with a disability, thereby embodying disability by proxy (Rouse 2004; Silverman 2012; Hart 2014). C hap t e r 4

1.

Color-­blind racism is a racial ideology that became hegemonic in the post civil-­rights era. In this liberal version of racism, direct references to race are elided, structural effects of racism are ignored, Black “cultural inferiority” is blamed for barriers to access, and racial differences are naturalized (Bonilla-­Silva and Forman 2000). 2. See introduction, note 9, for further information on this study. 3. See https://www.cdc.gov/ncbddd/autism/addm-­community-­report/minnesota.html. 4. One other qualitative study had compared responses to autism in the Hmong, Latinx, and Somali communities in the Twin Cities (MDH 2014b). 5. I did end up interviewing several people who had been involved in the early years, but I was missing interviews with some of the key activists. 6. David Kirby is the author of Evidence of Harm: Mercury in Vaccines and the Autism Epi­­ demic; A Medical Controversy (2006).

Notes to Chapter Five   /  229 7. In fact, this topic often emerges in the committee meetings of the Interagency Autism Coordinating Committee, which decides on research areas in which to invest at the federal level (IACC 2016). Although there is recognition of the need to have better knowledge about the racial and class dynamics of autism, there is still little research available on the topic. 8. DeSoto used the Autism Diagnostic Observation Schedule (ADOS), which is an instrument for diagnosing and assessing autism. 9. They were also told they would be provided a meal and forty US dollars. 10. Herd immunity is a condition in which a high proportion of the population obtains immunity to a disease, usually through vaccination, which in turn protects those who cannot be immunized, such as infants and people with compromised immune systems. 11. Surrey Place, Research Ethics Board identification #150212. 12. An amount of forty Canadian dollars was offered as incentive. C hap t e r 5

1. I discuss my own views on vaccination and how I approach vaccine skepticism in the introduction to this book. 2. Throughout this chapter, I use the term vaccine “hesitancy” or “skepticism” to describe Somalis’ beliefs about vaccination. I avoid “antivaccination” because most Somalis are not antivaccination; and in fact, many people who express doubts about vaccines or fail to comply with the vaccine schedule in the United States are more “hesitant” than they are “antivaccine.” The WHO defines vaccine hesitancy as such: “Vaccine hesitancy refers to delay in acceptance or refusal of vaccination despite availability of vaccination services. Vaccine hesitancy is complex and context-­specific, varying across time, place, and vaccine. It is influenced by factors such as complacency, convenience, and confidence” (MacDonald 2015: 4163). Yaqub et al. point out that having doubts about vaccination is extremely common and that many people may be “hesitant” long before they delay or stop vaccinating, so that “focusing only on vaccine uptake rates and neglecting underlying attitudes is likely to underestimate the challenge of maintaining vaccination coverage in the future” (2014: 6). In addition, as I discuss later in this chapter, the media has a tendency to label anyone who holds doubts about vaccines an “anti-­vaxxer,” which is inaccurate and derogatory. 3. Measles is highly contagious and can cause serious health complications, especially in children under age five. For more information, see https://www.cdc.gov/measles /index.html. 4. The notion of the social contract is that individuals must share collective responsibility for the prevention of disease as a social good (Lakoff 2015). I am suggesting that Somalis do not feel protected by or included in a common good, and therefore reject their “duty” to uphold the social contract (see Mills 1997 on the racial contract). 5. Some statistical analyses suggest reasons why marginalized communities might refuse vaccination, including fear, beliefs that vaccines are unnecessary, and need for more information (Shui et al. 2005; Daniels et al. 2006; Freed et al. 2010). Freimuth et al. 2017 and Jamison et al. 2019 link Black distrust of biomedicine to lower rates of influenza vaccination. 6. For example, the CDC found that in 2017, vaccine coverage was lower among Black children, children living below the federal poverty level, and children who were uninsured or covered by Medicaid (Hill et al. 2017). In the state of Illinois, low-­income children on the Children’s Health Insurance Program (CHIP), a program for families

230  /  Notes to Chapter Six who make too much for Medicaid but who cannot afford private insurance, had been receiving free vaccinations. In 2014 the CDC said that children in CHIP could not receive free vaccinations, but the state of Illinois continued to provide them, thus accruing a debt of $24 million. Former Illinois Governor Bruce Rauner changed the policy to stop the accumulation of debt, but then low-­income children on CHIP no longer received free vaccinations (Schorsch 2019a). This is just one example of how the uninsured face barriers to vaccination. J. B. Pritzker, the current Illinois governor, reversed this policy (Schorsch 2019b). 7. A report written by two public health educators who have worked extensively in the Somali community indicates that Somali parents, regardless of class background or education level, perceive autism to be a greater threat than measles (Bahta and Ashkir 2015). 8. According to a member of Generation Rescue (a prominent vaccine-­skeptic organization) in Minneapolis, only 30 percent of children in Somalia have access to vaccination, and the WHO indicates that the Somali schedule contains half the number of vaccines provided in the US schedule (Carroll 2009). 9. Poor Black men (600 total, 399 of whom had contracted syphilis) were recruited by the US Public Health Service to observe the long-­term effects of untreated syphilis. The experiment ran from 1932 to 1972. The men in the study did not know they were infected, and when penicillin became readily available as a treatment for syphilis, it was withheld from them. 10. Eyal 2019 and Brownlie and Howson 2005 link the sociological literature on trust to vaccine hesitancy, but do not focus on racial differences. There are a few studies that address vaccine hesitancy (and not just undervaccination rates) among African Americans, but they are survey-­based and fail to attend to medical distrust (Shui et al. 2005; Wortley 2005; Daniels et al. 2006; Freed et al. 2010). One research group does suggest that vaccine hesitancy among Blacks is due to medical distrust (Freimuth et al. 2017; Quinn et al. 2017). Drawing on qualitative data, the group mea­sures distrust at three levels: in the vaccines themselves, in the system and health providers that deliver them, and in the policymakers who are responsible for vaccine schedules and regulation. The group points to the ways in which past and present racial injustices contribute to Blacks’ hesitancy and distrust of influenza vaccines (Jamison et al. 2019). This connection between medical distrust and vaccine hesitancy is rare. C hap t e r 6

1.

Some scientists use the term “microbiota” to refer to a collection of microbial or­ ganisms and “microbiome” to indicate their genes. Others use “microbiome” to denote the community of microbes living in a particular place (“biome” meaning community, whereas “ome” refers to genome [Yong 2016: 269FN1]). I use the terms “microbiota” and “microbiome” interchangeably. 2. During this video (MacFabe 2009), MacFabe shows footage of the mice after they have been given propionic acid. 3. Interview transcripts from the film are available at http://cogentbenger.com/autism/. 4. I put “obesity” in scare quotes to signal its social construction as a medicalized condition, which individualizes responsibility for “poor health outcomes,” obscures the structural and cultural conditions that inform eating practices and metabolic processes, and buttresses gender and racial norms and hierarchies. See Saguy 2012; Sanders 2019.

Notes to Appendix  /  231 5. The specific carbohydrate diet consists mostly of legumes, vegetables, and meat. 6. See Li et al. 2017 for a summary of these diverse findings. 7. Some suggest that the division is closer to half and half (Yong 2016: 10). 8. Archaea are an ancient single-­cell form of life that merged with bacteria billions of years ago, creating a eukaryote—­the group of organisms from which all animals descend (Yong 2016: 8–­10). 9. I will return to this topic below, but some research suggests that the womb is a microbe-­rich environment and/or that the placenta initiates the building of the microbiome while the child is still in utero (Stout et al. 2013; Aagaard et al. 2014; Wassenaar and Panigrahi 2014). 10. A few years later, Ellen published this theory in Medical Hypotheses (1998). 11. Clostridium difficile is a toxic bacterium that is present in many peoples’ guts, but when one’s immune system is compromised, it can spread throughout the gut and cause severe diarrhea. Clostridium difficile infection (CDI) is common in the elderly who are hospitalized or in long-­term care facilities. When broad-­spectrum antibiotics are given, the gut is stripped of its bacterial diversity, and spores from clostridia can remain and repopulate the gut when antibiotics are stopped. Vancomycin targets these pathogenic bacteria. After treatment with vancomycin, a patient would need a fecal transplant or strong probiotics to repopulate the gut with diverse bacteria. Andrew was given medical-­grade probiotics while he was receiving vancomycin and, later, Flagyl. Doctors do not prescribe vancomycin for long periods of time, because they fear the development of bacterial resistance. 12. Our mitochondria consume PPA for fuel. If there is an influx of PPA and the colon cannot process it, then our mitochondria can be flooded, stop working, and die. It is possible that mitochondrial dysfunction is one pathway by which autism develops (Frye et al. 2013; Frye et al. 2015). In addition, PPA can pass through the epithelial barrier, into the bloodstream, and through the blood-­brain barrier, directly affecting the brain. It can also trigger the immune system and cause an autoimmune response and inflammation (Frye et al. 2017). 13. For example, the Interagency Autism Coordinating Committee, which provides summaries of funding spent on causal research for autism, indicates in its 2013 Strategic Plan that 2010 was the first year microbiome research on autism received investment (IACC 2013). 14. See https://commonfund.nih.gov/hmp. 15. Interestingly, they find that while microbiome research could uncover key mechanisms of health disparities, exposure to antibiotics in early life is more common among privileged groups (Dowd and Renson 2018). 16. A meta-­analysis was published in JAMA in late 2019, illustrating a strong correlation between cesarean delivery and ASD/ADHD (Zhang et al. 2019). A pp e nd i x o n M e t h o ds

1.

See Decoteau 2020 for a more detailed description of this approach.

R e f e r e nc e s

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Ind e x

Africa, 124, 199–­201. See also Somalia Age of Autism (website), 169 agriculture, 3–­4, 8, 16, 199–­201. See also diets; genetic modification (GM) Ahmed, Amira, 141 Albion Flats (Toronto), 52 Allen-­Vercoe, Emma, 47, 49, 149, 185–­90, 197–­98, 200 alternative autism movement (AAM): “biomedical” treatments and, 8, 11, 14, 46, 106, 109, 113, 115, 123–­25, 143; capitalism and, 126–­27; colonialism and, 14, 124, 199; conferences and, 105–­17; credibility of, 114–­15, 119, 122–­23; individuality and, 119, 123–­24, 130; mythology of, 114, 116; privilege and, 125, 130; race and, 24, 124, 126, 128; theories of, 47, 113, 115–­18, 120. See also Autism One (conference); autism spectrum disorder (ASD); “biomedical” approaches (to ASD); Defeat Autism Now! (DAN!); Medical Academy of Pediatric Special Needs (MAPS) anjero, 196 antibiotics, 1, 4, 112, 183, 187, 192–­94, 196, 203. See also autism spectrum disorder (ASD); microbiome; vaccines anxiety. See mental illness (MI) applied behavioral analysis (ABA): access to, 78, 81, 102, 108, 142; cost of, 76–­91; depictions of, 83–­84, 88; funding for, 82, 85; government provision of, 69, 71–­72, 74, 77, 80, 85, 96, 102; history of, 11, 67, 70, 72–­75, 84; limitations of,

77, 89; medicalization of, 69–­74, 80, 82, 85, 102, 106; neurodiversity and, 82, 102; practices of, 70–­71, 75, 80, 84, 87–­ 88. See also autism spectrum disorder (ASD); behavioral therapies (for ASD); health care; schools articulation. See “misfitting” Asperger, Hans, 15 Asperger’s syndrome, 19 assimilation, 16, 31, 59–­60, 154, 157, 213. See also immigrants; medicalization; race; refugees; Somalis Atlanta, Georgia, 127 Autism and Developmental Disabilities Monitoring (ADDM), 5, 135, 223n8 Autism Benefit, 79–­80, 135, 146, 227n11 Autism Enigma, The (Sumpton and Gruner), 6, 146, 181–­82, 198 Autism Network International, 224n15 Autism One (conference), 105–­6, 119, 122, 125–­28, 140, 143, 182. See also alternative autism movement (AAM); autism spectrum disorder (ASD) Autism Ontario, 146–­47 Autism Research Institute (ARI), 113, 115, 123. See also Defeat Autism Now! (DAN!) Autism Research Review International (journal), 67 Autism Society of Minnesota, 167 autism spectrum disorder (ASD): access to services for, 56–­58, 85, 98, 100, 123, 137–­38, 140, 143, 147–­48; alternative theories of, 8, 31, 145, 193, 211–­16;

258 / Index autism spectrum disorder (ASD) (cont.) antibiotics and, 192–­94, 196, 203; binarization of, 18, 69, 80, 102; “biomedical” approach to, 46, 106, 113, 138; birth and, 187, 190, 198, 202–­3, 207, 209; comorbidities of, 1–­2, 80, 108–­9, 184–­85, 192, 195, 201; curability of, 11, 14, 20, 46, 91, 108–­10, 120, 122, 197; diagnostic bases of, 1, 15, 33–­34, 228n1; disparities in diagnoses of, 6–­7, 16, 18, 67, 91–­92, 177, 223n8, 224n10; disparities in treatment for, 7, 24, 69, 73, 77–­92, 126, 216; early intervention and, 7, 68, 71, 76–­77, 83–­84, 91, 102, 119; embodiment and, 8, 17–­18, 130, 191, 208–­9, 213; environmental theories of, 3–­4, 14, 16, 27–­31, 46, 50, 57, 106, 118, 120–­22, 144, 152, 199; as epidemic, 7, 15, 67–­68, 72, 82, 117–­18, 121; etiologies of, 21, 150, 165, 181–­82; fear of, 163, 165, 169–­70; as genetic disorder, 2, 8, 15, 19, 25, 31, 62, 75, 139, 223n7; government pressure and, 67–­68, 137–­39; and intellectual disability, 6, 18; and Latinx children, 7, 63, 139; limitation of mainstream approach to, 108–­19; microbial theories of, 181–­210; microbiome research and, 25, 149, 152, 181–­210, 212, 214; as neurological disorder, 145, 193–­94; nonverbal expressions of, 19, 57–­ 58, 74, 184, 192, 212, 228n3; object fixation and, 1, 192; ontologies of, 12, 18, 92, 116–­19, 130, 150, 212; pluralism of, 65, 107, 213; postcolonial theories of, 9, 23–­24, 31, 43, 62, 65, 210–­16; postcolonial theory of autism and, 9, 31, 62, 210, 212, 216; privilege and, 76, 91, 183, 211–­16, 226n1; psychotropic treatment and, 97–­98; race and, 6–­8, 18, 21–­24, 59, 98, 103, 130, 137; rates of, 2, 5–­7, 18, 67, 102, 106, 182–­83; regressive forms of, 62, 111, 194, 198; self-­advocacy and, 18, 82; self-­injury and, 28, 53–­54, 58, 73; social causes of, 11–­12, 15–­18, 20–­21, 67, 120, 123, 145, 200, 208; spectrumification of, 18, 24, 68–­69, 72, 88, 102; stigma and, 9, 41, 95; surveillance of, 6, 134–­35, 139, 146–­48, 227n5; tiptoeing and, 1, 184, 192; treatment of (see alternative autism

movement [AAM]; applied behavioral analysis [ABA]; behavioral therapies [for ASD]; “biomedical” approaches [to ASD]); vaccines and, 24, 47, 127, 153–­ 79; as “Western disease,” 2–­5, 15–­16, 22, 31, 65, 128, 199–­200, 208, 211–­16; as white middle-­class disorder, 6, 8–­9, 23–­25, 68–­69, 75–­76, 123, 128, 216; as whole body disorder, 47, 105, 116, 120–­ 21, 195 Autism Treatment Association of Minnesota, 76 Autism Treatment Evaluation Checklist (ATEC), 119 Auton v. British Columbia (2004), 82–­83 Baker, Sidney, 113, 115–­17, 119, 121, 124 Barre, Siad, 32, 60 behavioral therapies (for ASD): access to, 57–­58, 78, 82, 89, 101, 137–­38, 142; age and, 7, 87, 138; cost of, 76–­91; crisis-­driven policies of, 67–­68, 89, 102; critiques of, 19, 76; government provision of, 67–­69, 71–­72, 74, 77, 80, 82, 85, 96, 102; history of, 70–­76; language barriers and, 57–­58; schools and, 71, 81, 93; specificity of, 2, 73, 79, 88, 109; types of, 227n4. See also applied behavioral analysis (ABA); autism spectrum disorder (ASD) belonging, 13, 39–­40, 57, 129–­30, 200, 213. See also citizenship (contradictory); “misfitting” Benjamin, Ruha, 173–­74 Berezin, Mabel, 162 Bettleheim, Bruno, 113 biology. See microbiome; science “biomedical” approaches (to ASD): attraction of, 12, 46, 143; colonialist features of, 123–­24; controversies of, 106, 114–­ 15, 123; cures and, 11, 14, 109, 129; interventions of, 8, 115, 119, 124–­25; race and, 125, 127. See also alternative autism movement (AAM); Autism One (conference); Defeat Autism Now! (DAN!); Medical Academy of Pediatric Special Needs (MAPS) biomedicine. See medicine biopolitics, 157, 179, 205. See also vaccines biosocial group, 14–­15, 214–­15. See also epistemic communities

Index / 259 birthing, 4, 16, 111, 187, 189–­90, 196, 198–­99, 202–­3, 207, 209. See also cesarean section; microbiome Black Panthers, 128 Blaser, Martin, 189 Blume, Stuart, 160 board-­certified behavioral analysts (BCBA), 74, 76 Bolte, Andrew, 192–­94 Bolte, Ellen, 192–­95, 197–­98 Bourdieu, Pierre, 12, 151, 174–­75 Bowker, Geoffrey, 8, 13, 129, 209 breastfeeding, 187, 189–­90, 199, 203, 207. See also mothers; race Brian Coyle Community Center, 52 British Broadcasting Service (BBC), 226n13 Brown, Phil, 151, 215 Brownlie, Julie, 230n10 Canada. See multiculturalism; Toronto, Canada Canadian Autism Spectrum Disorder Alliance (CASDA), 146–­47 casein. See diets Cedar Riverside Plaza (Minneapolis), 52 Center for Infectious Disease Research and Policy, 168 Centers for Disease Control and Prevention (CDC), 5, 127, 135, 137, 139, 156, 158–­59, 223n8, 228n1, 229n6 cesarean section, 4, 8, 48, 189, 196, 202–­3, 209. See also birthing; microbiome; Somalis chelation, 14, 19, 106, 113–­14, 117, 124. See also “biomedical” approaches (to ASD) Child Behavior Research Institute, 113 Childhood Autism Rating Scale (CAR), 86 Children’s Health Insurance Program (CHIP), 229n6 Children’s Therapeutic Services and Supports (CTSS), 77–­80, 137 circumcision, 4. See also birthing; cesarean section citizenship (contradictory), 30, 51, 57, 64. See also belonging; refugees; Somalis Citizenship and Immigration Canada, 37 Clostridia, 193–­94, 197, 231n11 CNN, 168 Collen, Alanna, 201 colonialism, 42, 124, 156, 175–­76, 185, 200–­201, 208, 212, 224n13. See also

health care; immigrants; race; refugees; science; Somalis community alternative for disabled individuals (CADI) waivers, 98–­99, 101 comorbidities, 1–­2, 19, 21, 108–­9, 128, 212. See also autism spectrum disorder (ASD); microbiome; and specific comorbidities comprehensive multidisciplinary diagnostic evaluation (CMDE), 79. See also Autism Benefit contested illness (theory), 8, 11–­12, 14, 43, 215 COVID-­19 pandemic, 211 cultural capital, 12–­13, 51, 57–­58, 73, 76, 87, 90, 100–­101, 103. See also parents; race; Somalis; support groups (for ASD) Darling, Katherine Weatherford, 206 Defeat Autism Now! (DAN!), 11, 67, 113, 115–­16, 122. See also Medical Academy of Pediatric Special Needs (MAPS) denial, 40–­44, 58, 64, 91–­92. See also stigma depression. See mental illness (MI) de Soto, Mary Catherine, 138 developmental disabilities (DD), 2, 24, 41, 69–­72, 77–­78, 88, 95, 98–­100, 102. See also intellectual disabilities (ID) developmental disability waivers, 98–­100 Diagnostic and Statistical Manual, 15, 40, 42, 44, 86 diarrhea, 1–­2, 109, 123, 184–­85, 192, 194–­95. See also comorbidities; diets; microbiome diaspora, the: connectivity within the, 3, 29, 34, 134, 224n1; epistemologies of, 4, 23, 129, 185; experiences of, 6, 10, 30, 63–­64, 107, 129–­30, 174; identities and, 13, 30, 60, 213; postcolonial theory of autism and, 9, 31, 62, 210, 212, 216. See also postcolonial theory of autism; refugees; Somalis diets: behavior and, 25, 181–­85, 195–­96, 199; changes to, 27–­29, 47, 183, 185, 212; components of, 3–­4, 28, 182, 192, 195–­96, 207; effort of, 117, 184; geography and, 49, 183, 185, 189, 191, 207. See also agriculture; alternative autism movement (AAM); microbiome; Somalia

260 / Index disabilities: discrimination and, 82, 99–­100, 125; performativity and, 13, 30, 41, 78, 101; race and, 57, 99–­100, 125; schools and, 71, 92–­96, 98, 137; services for, 29, 51, 56–­57, 70–­73, 77–­ 80, 98–­100, 102; types of, 5, 19, 21, 68, 79–­80, 88, 91, 110, 212. See also autism spectrum disorder (ASD); developmental disabilities (DD); intellectual disabilities (ID); mental illness (MI); neurodiversity movement; schools disability rights movement, 71–­72, 95 disease profiles, 47, 185, 190 Disneyland, 159, 161 distinction. See politics of distinction distrust. See health care; medicine; public health; science Dixon Flats (Toronto), 52, 53 DNA, 186, 204–­5, 225n5 doctors: diagnoses and, 40, 111; dismissal by, 1, 7, 109–­10, 154–­57, 172, 177–­78; distrust of, 110–­11, 152, 176–­77; engagement with “biomedical” approach to autism, 109–­18; as patronizing, 155–­57, 170, 175; pharmaceuticals and, 46, 110; research and, 114–­15, 123, 155, 160; treatment by, 119–­20, 179; trust in, 158, 164–­65, 176. See also health care; medicine; race; science Douglas, Mary, 152 dysbiosis, 116–­17, 121, 188–­90, 193, 195–­ 96, 202. See also microbiome Eads, Alicia, 162 early intensive behavioral interventions (EIBI), 71–­72 Early Intervention Developmental and Behavioral Intervention Benefit (EIDBI), 79–­80, 135, 146, 227n11 early intervention treatment (for ASD): access to, 7, 91, 110; economics of, 68, 76–­77, 83–­84, 102. See also applied behavioral analysis (ABA); behavioral therapies (for ASD); intensive behav­ ioral intervention (IBI) eczema, 1–­2, 108, 167, 184, 189, 195. See also comorbidities Edelson, Stephen, 115, 118–­19, 123 Education Act in Ontario, 95 Egal, Mariam, 61, 139–­40

eighteen-­month shot. See measles, mumps, rubella (MMR) vaccine embodiment, 8, 13, 17–­18, 130, 191, 208–­ 9, 213. See also diaspora, the; heterodoxy emotional behavioral disorder (EBD), 93–­94 environmental causes of autism: hyperindustrialization and, 106, 123–­24; interactionist consensus of, 205; marginalization and, 57; sensitivity and, 27–­28, 121; theories of, 3–­5, 14, 25, 139–­40, 144, 152; Western factors and, 16, 31, 46–­48, 65, 128, 170, 199, 208, 212. See also autism spectrum disorder (ASD); microbiome; vaccines epidemics of absence, 183, 189 epistemic communities: definitions of, 10–­ 13, 107, 212; heterodoxy of, 12, 14; in Minneapolis, 8, 106, 135–­42, 151–­58, 178, 212, 214; parents and, 8, 11, 69, 171, 188, 218; support groups and, 2–­ 3, 8–­10, 25, 140–­50; in Toronto, 8, 24, 140–­52, 185, 195, 199, 212–­14. See also parents; science; Somalis; support groups (for ASD) eugenics, 122–­25, 173 Evans, Bonnie, 68 Evidence of Harm (Kirby), 168 Eyal, Gil, 15, 68, 72, 75, 99, 230n10 Fabian, Johannes, 199 Fairhead, James, 157 Falstaff Flats (Toronto), 52 family reunification, 34, 37. See also immigrants; refugees fifteen-­month shot. See measles, mumps, rubella (MMR) vaccine Filippi, Melissa K., 176 Finegold, Sydney, 194 Flagyl, 194 Food and Drug Administration (FDA), 114 food stamps, 50 Foucault, Michel, 23 Frieden, Thomas, 159 fundamental cause (theory), 46, 112, 206 Gamson, Josh, 149 gastrointestinal disorders, 188, 199, 201. See also comorbidities; diets; microbiome

Index / 261 Generation Rescue, 126, 169, 230n8 genetic/genomic (theory of autism): failures of, 194, 208; family histories and, 2, 9, 14; medicine and, 20, 122, 195; rejections of, 31, 62, 212; science and, 15, 19, 204. See also autism spectrum disorder (ASD) genetic modification (GM), 3–­4, 27, 183, 196. See also agriculture; diets; microbiome Giddens, Anthony, 174 Gilbert, Scott, 191 Globe and Mail (newspaper), 5, 133, 146 gluten. See diets Goldenberg, Maya, 160 Gould, Judith, 15 Guggenberger v. Minnesota (2015), 99 gut. See dysbiosis; gastrointestinal disorders; leaky gut; microbiome gut dysbiosis. See dysbiosis; microbiome habitus, 117, 130, 174–­75 Hacking, Ian, 17 Hall, Stuart, 213 Harare, Osman, 177 Harrington, Anne, 79, 81–­82, 100–­101 Harrison Education Center in Minneapolis, 93 Hart, Brendon, 20 Hassan, Adar: celebrity of, 126, 133, 142–­ 43, 146–­48, 181–­83, 198; frustrations of, 20, 88–­91, 108–­9, 146–­47; leadership by, 55, 88; as mother, 1–­4, 43, 96, 105, 184; theories of, 16, 48, 62, 122, 127–­28, 145, 156, 184, 188, 197, 202, 208 Hassan, Ahmed, 44–­46 Hassan, Hodan, 169 healing. See health care; medicine; mental illness (MI) health care: access to, 29, 102, 130, 178–­79; behavioral therapies and, 69, 72–­73, 75; crisis-­driven policies of, 67–­68, 89, 102; critiques of, 65, 107, 123, 209; culture and, 7, 14, 44–­46, 58, 64; discrimination and, 29, 68, 76, 172–­73, 176–­77, 209, 215; distrust of, 107, 151–­57, 169–­79, 214–­15; neoliberalization of, 68, 160–­62; performativity and, 29–­31; racism in, 25, 34, 134, 139, 173, 175;

surveillance and, 157, 175–­76; vaccines and, 142, 153–­79. See also doctors; medicine; parents; public health health insurance, 72–­74, 80, 114, 126, 162, 176. See also health care; Medicaid health social movement, 14, 136, 151, 214. See also cultural capital; epistemic communities; parents; support groups (for ASD) herd immunity, 148, 179, 214. See also vaccines Hess, David, 11 heterodoxy, 12, 21, 23, 107, 115, 151. See also epistemic communities high-­functioning autism, 18–­20, 49, 81, 89. See also Asperger’s syndrome; neurodiversity movement hijab, 60, 112 housing, 29, 50–­55, 65. See also race; Somalis Houston, Texas, 50 Howson, Alexandra, 230n10 Human Genome Project, 204 Human Microbiome Project, 198 hygiene hypothesis, 183, 189 hyperbaric oxygen, 113 hysteresis, 174–­75 Identification, Placement, and Review Committee (IPRC), 95 Immigrant and Refugee Board (IRB), 37 immigrants: geography of, 37, 39, 54–­55, 190; identities of, 4, 7, 30, 59, 61, 174; policy and, 7, 37, 39; refugees as, 13, 23, 39, 51; treatment of, 170–­71, 176–­77; vaccines and, 153–­79; vulnerability of, 16, 33, 56, 58, 101, 130, 163, 200–­201, 209, 225n6. See also diaspora, the; housing; refugees; Somalis Immigration Act, 1976 (Canada), 37 Immigration and Refugee Protection Act of 2002 (Canada), 39 Immunization, Tuberculosis, and International Health department, 165, 169 individualized education programs (IEPs), 90, 92 Individuals with Disabilities Education Act (IDEA), 71, 92 industrialization, 120–­24, 183, 189 Infantile Autism (Rimland), 113

262 / Index Infectious Disease, Epidemiology, Prevention and Control, 168 Institutional Review Board (IRB), 138 insurance. See health insurance intellectual disabilities (ID), 5–­7, 18, 91, 94–­95. See also autism spectrum disorder (ASD); developmental disabilities (DD); low-­functioning autism; mental illness (MI) intensive behavioral intervention (IBI), 83–­89, 149. See also applied behavioral analysis (ABA); autism spectrum disorder (ASD); early intervention treatment (for ASD); Toronto, Canada Interagency Autism Coordinating Committee (IACC), 135, 229n7 intermediate care facility (ICF), 98 International Classification of Diseases (ICD), 44 International Conference on Autism, 224n15 International Organization for Migration, 225n6 IQ tests, 18, 77, 86–­87, 98–­99, 110. See also autism spectrum disorder (ASD); neurodiversity movement; race; schools Irwin, Alan, 11 Islam, 35, 39, 59–­61, 105, 112, 174. See also race; Somalis jalaabiib, 60 Johns Hopkins Hospital, 15 Journal of Child Neurology (journal), 194 Kanner, Leo, 15, 113 Kanner’s autism, 62 Kediye, Fatima, 3, 19, 48, 60, 126, 143–­47, 181–­82, 195–­97, 208 Kenya, 32 Kilee Patchell-­Evans Autism Research Group, 181 Kirby, David, 136, 167–­68, 171 Knorr Cetina, Karin, 11 Laclau, Ernesto, 11 Lakoff, Andrew, 161 Lancet, The (journal), 114 Landecker, Hannah, 206 Larsson, Eric, 76–­77 lawful permanent resident status (LPR), 36–­37. See also refugees

Leach, Jeff, 199 Leach, Melissa, 157 leaky gut, 27, 184–­85, 195–­96. See also comorbidities; diarrhea; diets; dysbiosis; microbiome Lecavalier, Luc, 223n8 Leslie, Douglas L., 226n1 Life (magazine), 74 Lovaas, O. Ivan, 70, 72–­74. See also applied behavioral analysis (ABA); behavioral therapies (for ASD) Lovaas Institute Midwest, 76–­77 low-­functioning autism, 18, 49, 69, 77, 81, 86, 109. See also comorbidities; developmental disabilities (DD); high-­functioning autism; intellectual disabilities (ID); neurodiversity movement; schools Lozupone, Catherine, 190 MacFabe, Derrick, 149, 181–­83, 185, 189, 196–­97, 200 Mandell, David, 223n8 Mansfield, Becky, 207 measles, mumps, rubella (MMR) vaccine, 24–­25, 111, 114, 127, 136, 153, 163–­64, 166–­68, 171, 177. See also vaccines measles outbreaks, 136, 148, 153–­54, 159, 161, 163, 166, 168–­69. See also Minneapolis, Minnesota; Somalis; vaccines media, the: solicitation of, 84, 133, 135, 146; Somalis and, 6, 34, 40, 153, 171; vaccines and, 22, 153, 157–­60, 168–­69, 171 Medicaid, 74, 77–­80, 99, 103, 229n6. See also health care; health insurance Medicaid Home and Community-­Based Services (HCBS), 98–­99, 226n1 Medical Academy of Pediatric Special Needs (MAPS), 115, 119. See also alternative autism movement (AAM); Defeat Autism Now! (DAN!) medical apartheid, 152, 154, 156, 170, 173, 175–­76, 178–­79, 214–­16 medicalization, 72–­74, 82, 85, 102, 213. See also assimilation medicine: and the alternative autism movement, 76, 107, 109–­18, 123; atomization of, 110, 190–­91; critique of Western approach to, 23, 40, 64–­65, 172, 175–­79, 189–­91, 209; culture and,

Index / 263 7, 14, 44–­46, 58, 64; distrust of, 25, 58, 157, 162, 172–­73, 175, 214–­15; hybridization of, 45, 129; limitations of mainstream approach to, 40, 108, 230n4; racism in, 34, 125, 127–­28, 134, 156, 170–­79, 205–­7; racist history of, 125, 152–­57, 164, 170, 172, 179, 230nn9–­10; surveillance and, 157, 162, 170, 175–­76, 213. See also health care; medical apartheid; science mental illness (MI): ASD as, 77, 79; deinstitutionalization of, 68–­69, 72, 81, 99; limitations of Western approach to, 40; Somali approach to, 44–­47; stigma and, 40–­45 mental retardation (MR), 68 methylmercury, 207 Michael, Mike, 11 microbiome: antibiotics and, 4, 187, 189, 193; and autism, 181–­210; diets and, 181–­85, 196–­97; diversity of, 186, 188–­91, 197, 204, 208–­9; infantile development of, 48, 187, 189–­90, 203; migration and, 47–­49, 62; race and, 199–­202, 204; research and, 24, 112, 117, 124, 195, 202. See also autism spectrum disorder (ASD); “biomedical” approaches (to ASD); diets; science; Toronto, Canada Miller-­Gairy, Shanna, 63 Ministry of Children and Youth (MCYS), 83–­84, 87 Minneapolis, Minnesota: ASD services in, 56, 76–­82, 89, 92; epistemic communities in, 8, 106, 135–­42, 151–­58, 178, 212, 214; housing in, 16, 51–­54, 130; immigration to, 6, 16, 29, 33, 43, 50, 57, 134; race in, 89, 135–­42, 149, 214, 225n11; schools in, 58, 93–­94, 98, 135–­ 42; Somali visibility in, 126, 133–­42, 148–­49; support groups in, 8–­9, 32, 42, 144–­46, 150; vaccines and, 24, 152–­58, 163, 166, 168–­69, 215. See also race; schools; Somalis; Toronto, Canada; vaccines Minneapolis Department of Education, 178 Minneapolis Department of Health, 178 Minneapolis Public School system, 94–­95 Minnesota Department of Education, 135, 167

Minnesota Department of Health (MDH), 5, 135–­37, 155, 165, 167–­70 Minnesota Department of Human Services (MDHS), 77, 79, 100, 227n11 Minnesota Post (newspaper), 167 “misfitting,” 8–­9, 13, 24, 30, 64, 70, 72, 106, 108, 129, 213. See also belong­ ing; diaspora, the; immigrants; race; Somalis Missing Microbes (Blaser), 189 Mnookin, Seth, 158 Mofya, Saul, 63 molecular conduit model, 206 mothers: blame and, 112–­13, 122, 158, 202–­3, 206–­7; race of, 90, 203; toxic bodies of, 122, 202. See also parents Mouffe, Chantal, 11 multiculturalism, 96, 134, 146–­51. See also race; Toronto, Canada Mumper, Elizabeth, 115 Muslim ban (US), 35 National Autism Spectrum Disorder Surveillance System (Canada), 6 National Public Radio (NPR), 160, 171 National Society for Autistic Children (NSAC), 11, 67, 70 Ne’eman, Ari, 75 Nelson, Alondra, 128 neurodiversity movement, 18–­20, 75, 82, 102, 122–­23, 224n15. See also Asperger’s syndrome; Auton v. British Columbia (2004); high-­functioning autism; media, the neurotoxins, 193 New Republic, The (magazine), 161 New York Times (newspaper), 5, 226n13 NIH Common Fund, 198 nonverbal expression, 1, 18–­19, 21, 28, 42, 58, 73, 76, 194, 196, 210, 218. See also applied behavioral analysis (ABA); autism spectrum disorder (ASD); developmental disabilities (DD); diets; intellectual disabilities (ID); low-­functioning autism; schools; vaccines Novas, Carlos, 215 nursing facility (NF), 99 nutrition. See agriculture; diets; microbiome

264 / Index Omnibus Autism Proceedings (OAP), 114 Omnibus Budget Reconciliation Act (1981), 226n1 Ontario, Canada. See Toronto, Canada Ontario Autism Program, 67 oral bacitracin, 194 “outsiders within,” 8, 24, 40, 43, 62, 107, 126, 130. See also belonging; “misfitting”; politics of distinction; Somalis Pangborn, Jon, 113 Panic Virus, The (Mnookin), 158 Panofsky, Aaron, 206 parents: AAM and, 106, 118, 120; advocacy by, 67, 83–­87, 90, 95, 102, 114, 135, 140; beliefs of, 20–­21, 63, 109; blame and, 91–­92, 122, 202–­3, 206–­7; denial by, 1, 41–­42, 44; epistemic communities and, 8, 11, 69, 171, 188, 218; as expert amateurs, 70–­72, 76, 83, 113, 161; hopes of, 62–­63, 89, 108, 111; and labeling children, 29–­31, 41–­42, 44, 58, 65; outrage of, 111, 170; performativity of, 29–­30, 40, 57, 101; privilege and, 75, 86, 90–­91, 123, 127, 146, 216; record keeping by, 118–­19, 135, 139, 228n3; research by, 2–­3, 108, 115, 119, 142, 168, 193; responsibility of, 43, 57, 100, 165–­66; schools and, 93, 96–­97, 151; shame of, 42, 140–­41, 151; surveillance of, 76, 91–­92, 113, 206–­7; vaccines and, 22, 139, 142, 153–­79. See also doctors; mothers; patient movements; Somalis; support groups (for ASD) Parents United Against Autism (PUAA), 135, 139 Paris Attacks (January 2015), 34 patient movements, 14, 214–­15. See also epistemic communities “Pay Now or Pay Later,” 84 pediatricians. See doctors Pediatrics (journal), 127 performance of distinction. See politics of distinction Perry, Adrienne, 83, 86–­87, 89 personal care attendants (PCAs), 51, 56–­57, 81, 100–­101, 136, 141–­42, 224n3. See also Somalis pesticides. See agriculture pharmaceuticals, 46, 103, 110, 114–­15, 125, 156, 205–­6, 227n5

Pitocin, 209 Pitts-­Taylor, Victoria, 208 Plato, 216 pneumonia, 1–­2 police, 33, 54, 58, 97–­98, 173 politics of distinction, 31, 58–­65, 114, 128, 137, 154, 170–­72, 178, 214; postcolonial theory of autism and, 9, 31, 62, 210, 212, 216. See also health care; immigrants; parents; Somalis postcolonial theory of autism, 9, 31, 62, 210, 212, 216 postgenomic era, 204–­7, 209 post-­traumatic stress disorder (PTSD), 45. See also mental illness (MI) propionic acid (PPA), 182, 197, 231n12 psychogenic (theory of autism). See Bettleheim, Bruno; Lovaas, O. Ivan; “refrigerator mothers” public health: community participation and, 135–­39; distrust and, 151–­57, 169–­79; racism in, 25, 139, 179; surveillance and, 157, 162, 170, 175–­76, 213; vaccines and, 142, 153–­79 Rabeharisoa, Vololona, 214 race: and assimilation, 16, 31, 59–­60, 154, 157, 213; biological definitions of, 124, 128, 185, 201, 203–­4, 206, 209; colo­ nialism and, 124–­25, 201, 210; discrimination and, 135, 142, 146–­49, 173–­74, 228n1; essentialism and, 124, 199, 207, 214; exclusion and, 100, 129; inequality and, 204–­5, 211, 213; and medicine, 34, 125, 127–­28, 134, 152, 154, 156–­57, 164, 170, 172–­73, 175, 179, 205–­7, 230nn9–­10; multiculturalism and, 134, 142, 146–­47, 149, 151; performativity of, 61, 65, 137; privileges of, 87, 173; schools and, 58, 94, 96, 98–­99, 137, 151; and science, 22, 58, 131, 152–­57, 170–­79, 205, 230nn9–­10; vaccines and, 139, 153–­79. See also autism spectrum disorder (ASD); health care; medical apartheid; multiculturalism; schools; science; Somalis; Vitamin D deficiency Rauner, Bruce, 230n6 “refrigerator mothers,” 113, 122, 206 Refugee Act of 1980, 35 Refugee Cash Assistance program, 36 Refugee Corps, 225n6

Index / 265 refugees: alienation of, 17, 51, 91, 129; asylum and, 32–­37, 225n4; discrimination and, 148, 156, 164, 179; displacement of, 32, 213; and family reunification, 34, 50, 225n5; insecurity of, 54, 144; resettlement of, 13, 34, 36, 37–­39, 107, 112, 225n5; support for, 23, 29–­30, 39, 51; vaccines and, 153–­79. See also diaspora, the; immigrants; Minneapolis, Minnesota; race; Somalis; Toronto, Canada regression, 62, 111, 194, 198 Reich, Jennifer, 161 resettlement. See refugees Rimland, Bernard, 67, 113, 115, 118–­19 Riverside Plaza, 52 Roble, Idman, 3, 48, 56, 59–­60, 97, 108, 142, 148 Robogut, 186–­87, 188 Rose, Nikolas, 205, 207, 215 Rossignol, Dan, 115 Said, Edward, 17 San Diego, CA, 37 Sandler, Richard, 193–­94 Saudi Arabia, 33 schools: access to, 28, 39, 54; ASD and, 41–­42, 142; and disability integration, 27, 29–­30, 71, 94–­96; discipline in, 93, 96–­97; discrimination and, 92–­93, 148; parents and, 93, 96–­97, 151; as prison pipeline, 93, 95, 98; race and, 58, 94, 96, 98, 137, 151; segregation of, 27, 98; special education and, 5, 81, 134–­35, 137; surveillance and, 148, 151; therapeutic services and, 71, 81–­83, 92–­98. See also applied behavioral analysis (ABA); autism spectrum disorder (ASD); behavioral therapies (for ASD); Minneapolis, Minnesota; race; Toronto, Canada science: atomization of, 187–­88, 190–­91, 197, 205; challenges to, 11, 113–­15, 118–­20, 151; clinical trials and, 21, 73, 75, 87, 118, 120, 187–­88, 212; culture and, 10, 206–­9, 215–­16, 223n8; distrust of, 151–­52, 156; epistemic violence of, 45, 64; legitimacy of, 11–­12, 115, 158, 160–­61; limitations of, 13, 40, 73, 187; racism of, 22, 58, 131, 152–­57, 170–­79, 205, 230nn9–­10. See also epistemic communities; health care; medicine; public health; race

“Screams, Slaps and Love” (Moser), 75 Siebers, Tobin, 13, 214 Silverman, Chloe, 20 Sinclair, Jim, 224n15 Singer, Judy, 224n15 sleep, 1–­2, 20, 54, 108–­9, 111, 184. See also autism spectrum disorder (ASD); comorbidities; parents; support groups (for ASD) Smith, Sandra Susan, 174 social movement, 18, 29, 135–­36, 149–­52, 158–­60, 171. See also cultural capital; epistemic communities; parents; support groups (for ASD) social workers, 78 Somalia: health in, 3, 196; history of, 32–­ 33, 47, 60; longing for, 28–­29, 50, 62–­ 64. See also diaspora, the; diets; refugees Somali American Autism Foundation (SAAF), 139 Somali civil war (1991), 5, 40 Somali Public Health Advisors, 135 Somalis: alienation of, 94, 209; assimilation of, 31, 154, 178–­79; belonging and, 13, 47, 57–­58, 129; centering the experiences of, 17, 23, 152, 207, 211–­16; communities of, 46, 50–­51, 54, 57–­60, 134, 140–­44; cultural resources of, 44–­45, 59–­60, 90, 101, 112; as diaspora, 8, 10, 13, 17, 175–­76, 213; discrimination against, 100, 103, 149, 155, 175; epistemologies of, 8, 10, 14, 16–­17, 22–­ 24, 30–­31, 130–­34, 142, 151–­53, 178, 212–­13; ethnic enclaves of, 52, 54–­55, 130, 144, 148; exclusion of, 36–­39, 62, 64, 73, 88, 98, 100, 126, 130, 154, 166, 174, 208–­9, 213; forced migration of, 2–­6, 29; and government partnerships, 137–­39; housing and, 29, 50–­55, 65, 211, 226n14; and hybrid approaches to ASD, 8, 16–­17, 44, 46, 65, 105–­6, 112, 129, 133, 212; invisibility of, 146–­47, 150, 212; language barriers and, 58, 103, 177; manipulation of, 14, 124–­26; marginalization of, 8, 12, 14, 22, 91, 127–­ 28, 209–­10; mental illness and, 41–­47; “misfitting” of, 13, 24, 64–­65, 107, 213; performativity of, 17, 40, 51, 59–­61, 101, 130, 154, 169–­72, 178, 213–­14, 218; postcolonial theory of autism and, 9, 31, 62, 210, 212, 216; poverty

266 / Index Somalis (cont.) and, 55, 212, 226n15; resettlement of, 6, 17, 47–­48, 50, 57, 133; school and, 92, 96, 135; support for, 29, 51, 138–­39, 156; and toxic accumulation, 48–­50; uniqueness of, 10, 13, 23, 39, 149, 174–­75, 178, 213; violence and, 61, 95; visibility of, 65, 133, 135, 137–­ 38, 151; vulnerability of, 3, 12–­16, 30, 43, 50–­65, 112, 127–­28, 142, 165–­67, 185, 191–­95, 209–­16. See also autism spectrum disorder (ASD); diaspora, the; epistemic communities; housing; microbiome; parents; politics of distinction; postcolonial theory of autism; race; refugees; schools; support groups (for ASD); vaccines specific carbohydrate diet (SCD), 184 standardization, 61, 73–­74 Standing Senate Committee on Social Affairs, Science, and Technology (Ontario), 84 Star, Susan Leigh, 8, 13, 129, 209 Star Tribune (newspaper), 167, 169 stigma, 9, 41, 95. See also denial Supplemental Security Income (SSI), 50, 78, 81, 142 support groups (for ASD): cultural capital of, 13, 42, 54, 81, 90, 215–­16; diversity within, 139, 143–­45; as epistemic communities, 2–­3, 8–­10, 25, 140–­50; research and, 150, 185. See also alternative autism movement (AAM); applied behavioral analysis (ABA); Minneapolis, Minnesota; parents; Toronto, Canada Suzuki, David, 6, 133, 145 Sweden, 5 symbolic capital, 12–­13, 51, 57–­58, 73, 76, 87, 90, 100–­101, 103 teachers. See schools 10% Human (Collen), 201 Thompson, William, 127 tiptoeing, 1, 184, 192 Toronto, Canada: ASD services in, 56–­58, 82–­89, 130, 143–­44, 148; epistemic communities of, 8, 24, 140–­52, 185, 195, 199, 212–­14; housing in, 16, 51–­54, 226n12; immigration to, 27, 29, 38–­39, 63, 112, 134; invisibility of Somalis in, 133–­36, 146–­51, 214;

microbiome research in, 25, 152, 195–­ 99, 208, 215; multiculturalism and, 96, 134, 149; schools in, 92, 96–­98, 148; support groups in, 3–­9, 32, 42, 142–­52, 183, 185. See also diaspora, the; immigrants; microbiome; Minneapolis, Minnesota; refugees; Somalis; support groups (for ASD) Toronto District School Board (TDSB), 27, 96, 148 Toronto Housing Authority, 148, 226n14 Toronto Public School Board, 148 toxic accumulation, 16, 48, 209. See also environmental causes of autism toxicity. See environmental causes of autism Trump, Donald, 34–­35 trust. See medicine; science Tuskegee experiment, 155, 172, 230n9. See also medical apartheid Twin Cities. See Minneapolis, Minnesota Undocumented Convention Refugees in Canada Class, 38 United Nations High Commissioner for Refugees (UNHCR), 32, 34, 35, 37, 225n6 University of Minnesota, 138, 140, 168 US Department of Homeland Security (DHS), 225n6 US Refugee Admissions Program (USRAP), 225n6 vaccines: the “anti-­vaxx” movement and, 158–­60, 167–­69, 171, 179, 229n2; choice and, 142, 161–­62, 166, 175, 178; coercion and, 156, 172, 175–­77; distrust of, 58, 153–­79; divisiveness of, 24, 114, 134; double vaccinations, 47, 163, 166, 170, 172; education and, 138–­39, 154–­62, 165, 168–­71, 178–­79; herd immunity and, 148, 179, 229n10; injuries and, 4, 21, 153–­79; losing speech and, 164, 166–­67; morality and, 158–­59; politics and, 152–­79; rates of, 25, 136, 153, 168, 229n6; research and, 22, 110–­11, 138; skepticism and, 25, 140, 153–­79, 214, 229n2, 230n10; sterilization and, 172, 175–­76; surveillance and, 148, 170; toxicity of, 22, 138, 154, 167, 171. See also doctors; healthcare; immigrants; medical apartheid;

Index / 267 medicine; Minneapolis, Minnesota; parents; science; support groups (for ASD); Toronto, Canada vaginosis, 203 vancomycin, 193–­94, 197–­98, 231n11 Vitamin D deficiency, 3, 49, 112, 124, 128, 139, 196. See also Africa; autism spectrum disorder (ASD); race; Somalis vomit, 188, 192. See also comorbidities; diets; dysbiosis Wakefield, Andrew, 114, 136, 167–­68, 171 Washington, Harriet, 158 welfare (monetary), 56–­57, 162

Weli, Fartun, 34, 155, 175 “Western disease.” See autism spectrum disorder (ASD); postcolonial theory of autism Wing, Lorna, 15 World Health Organization (WHO), 40, 229n2, 266n13 Wynberg v. Ontario (2006), 85, 96 xenophobia, 56, 61, 128, 201, 212. See also immigrants; race; refugees Yaqub, Ohid, 229n2 Zarowsky, Christina, 44