“As a Person of Colour,I Was a Misfit Anyway”: Barriers to Autism Identification According to Ethnically and Racially Minoritized Adults

Abstract

Background:

Ethnic and racial disparities in autism diagnosis have prompted growing interest in the role of “culture” in shaping these inequalities. However, much of the existing literature adopts a deficit-based perspective, locating diagnostic barriers within the cultural beliefs, attitudes, and behaviors of ethnically and racially (ER) minoritized groups. These studies often rely on essentialist views of culture, and neglect how broader cultural factors may impact these inequalities. This study delves into some of these neglected cultural factors.

Methods:

This article draws on 27 in-depth interviews with ER minoritized adults in Belgium and the Netherlands, most of whom were (self-)diagnosed in adulthood. It explores how these individuals make sense of their experiences before diagnosis and examines additional cultural pathways to autism inequalities than those already discussed in autism research.

Findings:

First, participants frequently interpreted their experienced difficulties with dominant forms of social interaction and communication as consequences of their minoritized status in White environments, shaped by wider processes of othering. This framework for understanding their experiences, which they had internalized through processes of othering, often precluded alternative explanations, such as autism. Second, participants described feeling disconnected from public portrayals of autism, reflecting the historical framing of autism as characteristic of White, middle-class boys and men.

Conclusions:

These cultural dynamics remain largely absent from autism research on “culture,” which has tended to prioritize deficit-oriented accounts grounded in cultural essentialism. This study challenges such perspectives by focusing on how social structures and power relations shape the visibility and recognition of autism at the level of meaning-making. It addresses a critical gap in the literature by illuminating the intersectional experiences of minoritized autistic individuals navigating exclusionary environments.

Community Brief

Why is this an important issue?

In places such as North America and Europe, people from ethnic and racial minority groups are less likely to be diagnosed with autism. Researchers have started paying more attention to these inequalities, but most studies still leave out the voices of these minority groups themselves. This had led to a narrow and biased view of how “culture” affects autism diagnosis, often also reflecting a deficit view of minority groups. Moreover, we know very little about how minority adults make sense of being late (self-)diagnosed.

What was the purpose of this study?

This study aimed to understand how adults from ethnic and racial minority backgrounds reflect on their late (self-)diagnosis of autism. It explored how people make sense of their experiences and how this can help explain why some groups identify autism later than others. The goal was not to list every possible cultural reason behind diagnostic inequalities, but to focus on the cultural patterns that are underexplored in current research. Moreover, as research on ethnic and racial inequalities usually focuses on the experiences of parents of autistic children, this study aimed to shift the focus to autistic adults, allowing them to reclaim their own childhood experiences.

What did the researcher do?

I interviewed 27 adults in Belgium and the Netherlands from various ethnic and racial minority backgrounds, most of whom were (self-)diagnosed in adulthood. I explored how they made sense of their earlier life experiences as undiagnosed minority individuals.

What were the results and conclusions of the study?

The study identified two cultural patterns that help explain delays in autism diagnosis. First, many participants said they never considered autism during their youth. They, and their significant others, explained their challenges with social interaction as simply part of their experience of being a minority in White environments. Second, participants felt they could not relate to common portrayals of autism, which tend to focus on White middle-class boys and men. This shows how stereotypes still shape how people recognize autism in themselves and others.

What is new or controversial about these findings?

These findings show that current models for understanding autism diagnosis often miss key cultural factors. Rather than focusing only on minority groups’ supposedly “different” beliefs, as many studies do, researchers should also look at wider cultural processes, such as how people understand their own experiences.

What are potential weaknesses in the study?

This study does not claim to cover all cultural factors affecting autism diagnosis. It focuses on two broad cultural themes, meaning other important factors may not be included.

How will these findings help autistic adults now or in the future?

The findings offer a clearer picture of how cultural factors shape racial and ethnic inequalities in autism diagnosis.

The findings challenge narrow, stereotypical views of “culture” in autism research, encouraging more inclusive and fair approaches.

The results highlight the need to address biases, both among health care providers and individuals who may misinterpret autistic traits as simply cultural differences.

The study encourages autism researchers to incorporate a broad definition of “culture” in autism research to gain a better understanding of the observed disparities.

Keywords

critical disability studies ethnicity and race ethnic and racial disparities in autism intersectionality autistic whiteness cultural essentialism

Introduction

In recent years, autism researchers have made important efforts to address ethnic and racial inequalities in the identification and diagnosis of autism, as well as in confronting the whiteness, epistemic violence, and broader inequities that permeate the research field itself. Ongoing debates have emerged around diagnostic disparities and the persistent underrepresentation of people of color in autism research.^1,2 Scholars are examining structural racism and discrimination within the field,^1,3,4 exposing how “autistic whiteness” operates in popular culture,^5,6 and exploring ways to decolonize autism and neurodiversity studies.^7–9 Moreover, critical frameworks are being developed to challenge whiteness through collaborative knowledge production.¹⁰

Despite these important and timely shifts, however, significant gaps remain in our understanding of ethnic and racial inequalities related to autism and autism research—three of which this article seeks to address. First, as I argued in a previous article,¹¹ much existing autism research on ethnicity, race, and culture adopts a deficit-oriented lens, focusing on how the cultural beliefs and attitudes of ethnically and racially (ER) minoritized groups complicate the diagnostic process. For example, some studies suggest that minoritized groups possess cultural practices, value systems, and expectations that hinder the recognition of autistic traits, and hence diagnosis.^12,13 In advancing such explanations, however, this body of research risks lapsing into cultural essentialism. It frequently homogenizes diverse minoritized groups as though they share a single, unified cultural logic, thereby overlooking intra- and intergroup differences. Moreover, it builds on the assumption that people interpret their experiences primarily through fixed “ethnic” or “racial” cultural frameworks, rather than recognizing that meaning-making processes are complex, dynamic, and context-dependent.¹¹ There is therefore a pressing need for broader cultural analyses that move beyond essentialist explanations and instead explore how minoritized individuals make sense of their lives through diverse cultural frameworks—such as shared narratives and systems of categorization surrounding autism.¹⁴

Second, although critical intersectional work on ethnic and racial disparities in autism is expanding,^15–18 much of it is based on review studies or on the experiences of ER minoritized caregivers of autistic children. With a few exceptions,^19,20 far less attention has been given to the lived experiences of ER minoritized autistic adults themselves. Third, research on ethnic and racial inequalities in autism remains heavily Anglo-centric, leaving exclusionary dynamics other than racialization in North America and the United Kingdom largely unexamined. This inquiry is urgently needed, however, because salient forms of exclusion in other contexts—such as strong anti-Islam attitudes and the racialization of Muslims in Western Europe²¹—remain insufficiently explored, despite their potential impact on the lived experiences of ER minoritized autistic persons and their families.

This study addresses these gaps by offering a broader cultural analysis of ethnic and racial disparities in autism identification within the Western European contexts of Flanders (Dutch-speaking Belgium) and the Netherlands. Drawing on 27 interviews with ER minoritized autistic adults, I highlight two understudied cultural mechanisms that may contribute to disparities in autism identification and hence diagnosis: (a) the tendency to explain autistic traits away through ethnicity or race, and (b) the reinforcement of barriers to self-identification created by narrative and visual representations of autism as a White male condition.

In doing so, this cultural analysis does not claim to provide an exhaustive account of all cultural influences on ethnic and racial disparities in autism identification. Rather, it focuses on these two overlooked dynamics in the literature on the role of “culture,”^13,22 because they illustrate why a broad, nonessentialist understanding of culture is crucial for making sense of observed inequalities. It is also important to emphasize that this article does not center explicitly on the structural inequalities and exclusions that respondents experience at the intersection of autism and ethnicity or race (i.e., for another article). Instead, to understand how cultural factors—such as prevailing representations of autism—shape identification processes, I explore how ER minoritized autistic adults made sense of their lives before and until they (self-)identified as autistic (and were hence aware of this identity axis), and what these retrospective accounts reveal about the cultural mechanisms that contribute to inequalities in autism identification. This shift in focus enables a move away from a deficit-oriented view of diagnostic disparities toward a recognition-oriented perspective—one that foregrounds respondents’ struggles to have their autistic identity recognized.

In what follows, I elaborate on the three gaps identified above. I then outline the research context before turning to the study’s methodology, methods, findings, and conclusion.

Cultural essentialism in autism research and the need for cultural analysis

In response to the well-documented ethnic and racial disparities in the identification of autism,^2,23 scholars have increasingly sought to examine their underlying causes, with a growing body of work focusing on the role of culture.^13,22 However, as I elaborate elsewhere,¹¹ much of this research—particularly within the psy-disciplines—remains constrained by essentialist assumptions. This often results in explanations that frame the “cultural beliefs” or “attitudes” of minoritized groups as obstacles to accurate autism identification and diagnosis, thereby reinforcing deficit-oriented narratives. For instance, scholars frequently note that some ER minoritized groups interpret autism as divine punishment, or suggest that certain behaviors are not perceived as autistic due to differing cultural norms regarding “typical” behavior, which purportedly hinders diagnosis.^24,25 Such explanations are culturally essentialist insofar as they treat culture as a fixed set of shared, group-specific traits that determine behavior, reducing complex social processes to simplistic group characteristics.^11,26

This is not to suggest that these explanations are entirely without value, nor that the cultural dynamics they describe are fictitious. Rather, the problem lies in their uniform application, which overlooks both differences within and between groups. For example, the so-called culture of ER minoritized groups in the Global North contexts cannot simply be equated with the “culture” of their countries of descent—yet research often implicitly makes this assumption.¹¹ Another key limitation of cultural essentialism in autism research is that it positions ER minoritized individuals as mere “bearers” of an ethnic or racial culture, ignoring the multiple cultural frames of reference they navigate.²⁷ As a result, scholarship has concentrated on how “minority culture” affects autism identification and diagnosis, while paying far less attention to the wider explanatory frameworks individuals might draw upon when they are not required to speak from a predetermined cultural standpoint. Processes of minoritization, racialization, othering, racism, discrimination, and other more structural mechanisms consequently remain underexamined.

To develop a more nuanced understanding of how culture shapes inequalities, a broader form of analysis is needed—one more closely aligned with sociology and social anthropology (both currently underrepresented in autism research) than with the psy-disciplines.²⁶ If we seek to understand why ER minoritized groups are less likely to identify as autistic and/or to receive a formal autism diagnosis, we must adopt a more expansive concept of culture. This entails examining culture as the social construction of frames, publicly shared narratives and images, identities, and cultural categorizations, among other things, produced through processes of meaning-making.²⁸

While autism research on “culture” has often focused on group-specific beliefs, for instance, much less attention has been paid to how autism itself operates as a cultural category—one whose public representation is heavily racialized and classed—in the process of identification and diagnosis. Yet, research demonstrates that mainstream portrayals contribute to a narrow prototype of the autistic subject as male, White, and middle-class.^6,29–31 As Kearl³² argues, it is therefore crucial to interrogate how whiteness structures the very visibility of autism, shaping both self-identification and external recognition among ER minoritized groups. Indeed, this, too, is “culture.” Yet, with a few exceptions,¹⁹ there is little empirical qualitative research examining how these cultural meaning-making processes (e.g., autism as White) shape whether and how minoritized groups come to self-identify as autistic, and how others identify them.

The need for intersectional research on a microscale level of analysis

Alongside studies that seek to explain autism disparities through cultural factors, there has been a growing body of research in recent years that foregrounds the role of structural inequalities within the field of autism.⁴ This work has highlighted the ways in which ER minoritized groups have been excluded from dominant autism narratives both in mainstream society and academic research.^33,34 Moreover, there is increasing evidence of systemic racism affecting diagnosis and access to social services for minoritized autistic persons.^1,4,15,35 To counter the long-standing privileging of White experiences in autism research, scholars are now increasingly adopting intersectional approaches when studying autism disparities. These studies explore how intersecting axes of privilege and oppression—such as race, ethnicity, gender, class, and disability—shape unique configurations of structural (dis)advantages.^18,36,37 As these studies highlight how ER minoritized persons are confronted with racism and ableism, scholars are increasingly integrating the Disability Studies and Critical Race Theory into autism research.^38,39

This research has been fundamental in countering the deficit models of explanation contained in many studies on autism and culture. However, a substantial portion of this intersectional literature draws on review articles,^16,18,33,34 or continues to focus primarily on the experiences of ER minoritized parents and caregivers, rather than on the accounts of autistic adults themselves.^{15,17,40–42} Indeed, to date, only a limited number of studies have centered on the lived experiences of ER minoritized autistic persons by conducting empirical research among these groups.¹⁸ Moreover, although attention to structural oppression within autism research is essential, critical studies have tended to give less consideration to micro-level dynamics—how inequalities are felt, interpreted, and negotiated in everyday interactions. In-depth empirical research with ER minoritized autistic adults is therefore vital not only for understanding how they navigate and make sense of these inequalities, but also for enabling them to reclaim their own childhood narratives, now that they can make sense of their childhood experiences through a different lens.

The need to expand autism research on disparities beyond Anglophone Global North contexts

Qualitative research on ethnic and racial disparities in autism remains heavily concentrated in Anglophone settings, particularly the United States and the United Kingdom. Consequently, not only the problem descriptions but also the proposed solutions tend to revolve around these contexts.⁴³ Yet, understanding autism—and therefore inequalities in autism—requires close attention to the social environment in which it is embedded.⁴⁴ This makes it urgent to broaden research to other regions.

There are at least two key reasons for this. First, many characteristics associated with autism are inherently interactional, involving challenges with dominant norms of communication and social interaction. To understand how minoritized groups navigate these interactions—and how ethnic and racial inequalities may emerge from them—research must be grounded in their specific sociocultural and sociopolitical contexts. What is perceived as “deviant,” and thus the ways in which minoritized groups come to be seen as “deviant,” is profoundly shaped by local cultural norms. Second, while the literature in the United States and the United Kingdom has appropriately foregrounded racial discrimination, current scholarship on ethnic and racial disparities in autism diagnosis says little about religion, even though in much of Western Europe, Islam has become a central dividing line, with Muslims positioned as the significant Other.²¹ Research on interactions between mental health care providers and Muslim women in Belgium, for example, shows that providers’ judgments are often shaped by stereotyped assumptions about Islam, and by essentialist ideas about how religious beliefs influence patients’ attitudes and behavior.⁴⁵ Such dynamics underscore why extending the geographical scope of qualitative research is crucial. In autism research as well, a broader regional focus is necessary to capture the full spectrum of inequalities that shape autistic lives across diverse social contexts.

Flanders and the Netherlands: Postcolonial and postmigration research contexts

This research is situated in the Western European contexts of Flanders, the Dutch-speaking region of Belgium, and the Netherlands. In both these countries, labor migrants and postcolonial migrants, along with their descendants, have been ethnicized as non-Belgian or non-Dutch, and racialized as non-White.⁴⁶ In what follows, I will outline these processes of ethnicization and racialization. To discuss these contexts critically, this section contains racially offensive language and imagery that may be distressing to some readers.

Immigration to Belgium and the Netherlands intensified after the Second World War. Following Indonesia’s independence, the Netherlands saw a large influx of repatriates from the former Dutch East Indies. Later, both countries recruited a large group of labor migrants from Southern Europe, Turkey, and North Africa, who had their families joined at a later stage. The Netherlands also experienced postcolonial migrations from Suriname and the Dutch Antilles, and Belgium from Congo, Rwanda, and Burundi.^47–49 From the 1990s, both countries also became key destinations for asylum seekers from various regions (the Middle East, Eastern Europe, etc.). Today, major Belgian and Dutch cities such as Antwerp, Brussels, Amsterdam, and Rotterdam have become “majority–minority cities,” meaning that residents with a migration background now constitute the numeric majority of these cities’ population. Moroccans and Turks are the largest minoritized communities.⁵⁰

This diversification has been accompanied by significant controversy. Since the postwar migration flows, both contexts have been marked by overt racism and structural discrimination—ranging from exclusionary signs such as No dogs or North Africans at the entrances of shops and coffee houses, to systemic inequalities in employment, housing, education, and health care.⁵¹ This racism has primarily been targeted at the large group of residents of non-EU origin, particularly those of Moroccan and Turkish descent (the largest groups), who have been stereotyped as criminal, maladjusted, misogynistic, or dependent on the welfare state.^52–54 Despite having higher levels of education than the general population, also Black individuals of sub-Saharan descent continue to face substantial discrimination and racism in health care, housing, and the labor market.⁵⁵ Local populist politicians have further fueled the anti-Muslim sentiment, contributing to the electoral success of anti-Islam parties in both regions.^56,57 The racialization of Muslims in both countries predates 9/11 and operates less through phenotype than through essentializing discourses of “culture,” “norms,” and “values” that depict Islam as incompatible with so-called Western liberalism. Consequently, persons of assumed Muslim descent—regardless of skin tone—are perceived as non-White and constructed as the fundamental Other, a process well documented across several Western European contexts.^21,58–62 Public debates on the “integration” of Muslims in Belgium and the Netherlands therefore persist, even among generations born and raised in these societies.^21,60

These research contexts are also marked by a strong reluctance to use the term “race” and by taboos surrounding racial classification, often describing themselves as “postracial societies.” In both Belgium and the Netherlands, the trauma of the Holocaust has made it morally unacceptable to formally register people’s race. Instead, census data on ethnicity rely on individuals, and their (grand)parents’ country of birth and hence descent. Another category historically used in ethnic-racial terms is “allochtoon” (those of, respectively, non-Belgian or non-Dutch ancestry), a label opposed to autochtoon (those of alleged “native” ancestry) and applied to groups viewed as less integrated into the “modern” Flemish or Dutch society (see above).^46,63,64 In recent years, however, allochtoon has come under criticism for its negative connotations, and the terms “ethnic minorities” and “people with a migration background” have become increasingly common to classify ER minoritized groups. Concurrently, racial classifications such as White, Black, and people of color have started to become common in everyday speech in Flanders and the Netherlands, especially among those who identify as progressive-left, although still very contested in the public debate.^46,65 Against this backdrop of ethnicization and racialization, labels such as “Moroccans,” “Muslims,” “allochthonen,” “ethnic minorities,” and “people with a migration background” are now used interchangeably—despite their different meanings, connotations, and degrees of racialization—both in public and political discourses, and in everyday speech (hence also by the respondents of this study).

Methodology and Methods

The study and the respondents

This article is part of a broader cultural sociological study on how cultural ideas about autism become ethnicized and racialized in a Western European context, how these ideas may impact diagnostic inequalities, and how cultural analysis can enhance our understanding of the observed inequalities in the identification and diagnosis of autism (see my previous work for more information).¹¹ For this article, I draw on 27 in-depth interviews conducted in Flanders and the Netherlands. The participants were selected through a social media call and through nonprofit autism organizations, accompanied by snowball sampling, and were eligible to participate if they had an autism diagnosis and/or self-identified as autistic/person with autism (see further), self-identified as ER minoritized, and were 18 years or older. The respondents were hence all ER minoritized and self-identified as South African (1), Algerian Moroccan (1), Indonesian (1), Surinamese (1), Dutch Surinamese (1), Surinamese Creole (1), Belgian Congolese (1), Turkish (2), Chinese (1), Indian (1), Burundian (1), and Belgian Bolivian (1), with most self-identifying as Moroccan (14). In addition, 18 respondents self-identified as Muslim during the interview, stressing their minoritized position. Twenty-two respondents self-identified as women, four as men, and one as woman/nonbinary as they are still figuring out whether they are cisgender. The participants range in age from 19 to 55 years. Twenty-two of them were studying for higher education or had obtained a higher education diploma, and five had a secondary education diploma. At the time of the interview, seven respondents were students, two were job seeking, and 18 were employed in several sectors, such as health care, IT, the government sector, or were self-employed. Fourteen participants were from the Netherlands and 13 from Belgium.

Sixteen participants had a formal autism diagnosis, while 11 strongly suspected they were autistic and self-identified as autistic or as a person with autism. In contrast to English-speaking regions, research has shown that there is a relatively weak preference for identity-first language in Flanders and the Netherlands.^66,67 As this was also the case among my own respondents, I may alternate between “having autism” and “being autistic” in this article, to respect the preferences of the respondents. Except for three participants who were diagnosed at ages 6, 11, and 14, the remainder received their diagnosis or began to suspect they had autism in adulthood. About half of the respondents also had additional diagnoses, including Attention Deficit Hyperactivity Disorder (ADHD), dyscalculia, dyslexia, (complex) Post-traumatic stress disorder (PTSD), anxiety, eating disorders, or depression. For the purposes of the broader study, and because ethnic and racial disparities are especially pronounced among persons without intellectual disabilities, all participants were individuals who reported “average” to “above average” intellectual abilities.

Positionality statement

All stages of the analysis, including the interviews and coding, were conducted by me—an ethnically minoritized neurodivergent researcher. I therefore shared several marginalized identities with my respondents, while simultaneously navigating a field in which most autism researchers are White, and where epistemic inequality and whiteness remain pervasive.¹⁰ While I also share certain privileges with many participants—such as having had access to higher education—I occupy a position of power through my funded role at a Flemish university. This academic position affords me access to otherwise restricted knowledge (e.g., paywalled journals, close familiarity with academic jargon) and, most importantly, the time, resources, and training to contribute to academic knowledge production through publishing in international outlets and presenting at conferences, among other things. As my coauthor and I have discussed in detail elsewhere,⁶⁸ positionality and reflexivity should therefore not be reduced to the question of whether researchers share identities with their participants. Rather, they entail a critical interrogation of power relations in academic knowledge production related to those identities, and the epistemological and methodological foundations that underpin research. My academic motivation for undertaking this study has arisen from the epistemological and methodological issues I have identified as a cultural sociologist working in ethnic and racial studies and critical disability/neurodiversity studies, which I find deeply problematic: ER minoritized autistic adults remain significantly underrepresented in autism research; and the use of ethnic and racial categories—as well as the concept of “culture”—is often methodologically and conceptually troubling, as I discuss more in detail elsewhere.¹¹

Methodology, methods, and analysis

My analysis is situated within the interpretivist and subjectivist research traditions, which assume that knowledge production emerges through interactional processes and power dynamics.^69,70 In this view, data are not “collected” as reflections of an objective reality or single “truth,” but rather are constructed and interpreted within specific relations and sociopolitical settings. In addition, my work draws on critical scholarship from ethnic and racial studies.

I conducted in-depth interviews, where I encouraged the respondents to reflect on their life history—particularly their childhood and youth. The aim was to understand how autistic adults make sense of their past (childhood) experiences as undiagnosed, ER minoritized individuals, how they—and significant others—explained the difficulties they experienced during a period when they were not yet looking through an autism lens. I made use of a semistructured interview guide that was flexible and allowed participants to lead the interview. The interview process involved questions about their childhood and youth experiences, autism in general (how they experience autism, how they came to diagnosis, etc.), the support of their environment (the ways in which they feel accepted by others, the ways in which they are confronted with stereotypes or stigma, etc.), the diagnosis process, and the ways in which they experience their intersectional identities. The interviews were conducted in Dutch and lasted between 1 and 3 hours. Five interviews were conducted in a physical location, and the rest were conducted online, based on the preferences of the participants.

With the consent of the respondents, I recorded and transcribed all interviews verbatim. I made use of the software program NVivo to code and analyze the material. During the coding process and analysis, I used abductive analysis as outlined by Timmermans and Tavory.⁷¹ In concrete terms, this means that my analysis of underexposed cultural factors arose from the surprise that the cultural factors alluded to by the respondents went beyond what is usually emphasized in the literature (and what was hence theoretically expected). This approach allowed for iterative movement between theory and empirical data during the coding process, to “go deep” in and “step away” from my data.⁷² First, I coded the data openly while questioning what had taken place, who was involved, when and where certain observations took place, how they took place, and with what consequences. Examples of such codes are “prior explanation autistic traits,” “self-identifying as autistic,” “how others explained traits before diagnosis,” “salience ethnicity/race,” “stereotyped image of autism: self,” “stereotyped image of autism: others,” “impact representation of autism,” “processes of othering” and so on. Second, based on the open codes, I focused on the most salient and significant codes (e.g., “salience ethnicity/race”) to refine key categories. I reexamined the interviews with the most salient codes/observations while keeping the theoretical background in my mind.

This research received ethical approval from the Ethics Committee for the Social Sciences and Humanities at the University of Antwerp (file number SHW_2024_220). The quotes used in this article are translated from Dutch, and all names in this article are pseudonyms.

Findings

Being different in everyday interactions explained away by ethnicity and race

When asked how autism has shaped their lives, most respondents started sharing their experiences by referring to difficulties with building and maintaining friendships (Amal); difficulties reading people (Asmara); having another way of communication (Dounia); not being able to connect with others (Ilias), not being able to act very socially (Bouchra), difficulties understanding the cues of social relations (Maïti), being too honest and direct (Brahim) or difficulties in interacting with colleagues (Sacha).

Differences in the realm of social communication and interaction hence have been crucial in how most (but not all) respondents came to understand autism and their own social experiences. This is not unimportant, because it was precisely these experienced difficulties with interaction and communication that they—and significant others around them—had long attributed to their ER minoritized position. Zayd, for example, was born in Morocco and moved with his family to the Netherlands at the age of two. Although he was raised in the Netherlands, he readily interpreted his inability to connect with his White majority peers as stemming from his ethnic and religious identity, given that he was one of the few minoritized persons in his immediate environment and at school:

I try to reach out, to connect, to make contact, but it just doesn’t work, again and again. And I keep wondering, why not? Why not? So very often I’d also think, well, I was born in Morocco and raised Muslim, and that was really the biggest difference I kept noticing. So, I very quickly made that connection, like, yeah, it must have something to do with that. I couldn’t really think of anything else at that time, you know? (Zayd, 45, Moroccan background)

Such an explanatory framework helped respondents make sense of why they generally experienced difficulties in forming connections with others and why they had struggled to make friends at school. Safaa, for example, was born in Morocco and migrated to Belgium at the age of 14 to join her father, who was already living there. Coming from a working-class migrant family and not yet diagnosed with autism at the time, she explained all her difficulties in connecting with her majority peers as resulting from her migration background:

Especially in secondary school, that’s when it [feeling of being different and difficulties connecting] really came up. Yeah, like parties, for example. And Scouts and Chiro [Flemish scouting that generally attract a White middle-class audience] and all the stuff that secondary school kids do. And how they talked about certain things and all that. And I just couldn’t connect with it, and I always thought, like, yeah, it’s just not working because I’m not part of that world, and that’s why I can’t talk about those things. Yeah, or that’s why I can’t really join in. So yeah… Looking back now, I see that I used to explain it by my, my culture. But actually, that wasn’t… […] a lot of it didn’t have anything to do with culture at all. (Safaa, 35, Moroccan background)

Most respondents reported feeling alienated not only from the White ethnic majority but also from members of their own ethnic groups or even their families. Nevertheless, according to them, this did not lead them to reconsider the explanatory framework described above. In other words, although respondents sometimes experienced discomfort within their own (non-White) ethnic and racial group or families as well, this did not diminish their conviction that their difficulties connecting with others stemmed primarily from their minoritized background. As Rachida succinctly puts it:

At home with my own family, I was different again. Yeah, you know, you don’t quite fit in there either. That was the case for me too, I was always the odd one out. But I didn’t make the connection between feeling different at home and feeling different at school. Those were two separate things for me. (Rachida, 40, Moroccan background)

What distinguishes these two social contexts, according to my analysis, is the presence or absence of processes of othering at the group level, or the extent to which respondents are othered based on their ethnic or racial background rather than their individuality. When behaving differently among peers of the same ethnic background or within their families, respondents felt that their non-normative behavior was perceived within these groups as rude, awkward, or quirky—they were seen as socially unfit as an idiosyncratic individual. In contrast, in predominantly White settings, their non-normative behavior was explicitly attributed to their ethnic and racial background, marking them as the “Other.” These processes of othering— whereby groups of people are categorized as fundamentally different from the majority based on ethnicity, race, culture, or religion—were particularly pronounced in school environments. For example, Brahim and Anissa, also diagnosed with ADHD, reported always being outgoing and lively, something that their teachers, White peers, and peers’ parents framed in a racist way as simply “typical” of “Moroccans” or even “Mediterraneans.” Even when not directly stated as in these cases, many respondents’ teachers reportedly communicated the message that their “weirdness” was due to their ethnic background:

Everything I did or said that seemed strange was attributed to me having another culture. […] So, it was always like, well, you come from a third-world country, that’s why you act like that, why you dress differently, behave differently, and have trouble making friends. (Safaa, 35, Moroccan background)

In these ways, throughout their childhood and adolescence, respondents were repeatedly made to believe—whether explicitly or implicitly—that their non-normative behavior was linked to their ethnic and racial background, an explanatory model that was already instilled in them from a very young age. These processes of othering and categorizing potential autistic traits as typical of the ethnic group haunt some respondents in adult life:

In my twenties, the message was basically: you’re just a difficult person, or you’re a bitch. I still get called a bitch, to this day. Ehm, and back then [during childhood and youth], it was like, you were seen as a difficult person and often my background was brought into it. So, it was always linked to my behaviour—like, you’re behaving this way because you’re Moroccan, and Moroccans have difficult behaviour. Everything was constantly explained through the lens of my ethnicity, which led me to internalise this image: that Moroccan women can’t be professional, that Moroccan women are problematic people who are hard to work with. Because people would say to me, well, you’re like this because Moroccans are like this. And even now, uhm, there are still people who refuse to accept that I’m on the spectrum. They’ll say, you’re not autistic, you’re just a bitch, and that nowadays it’s just trendy and woke to say you’re neurodiverse. (Chaima, 36, Moroccan background)

This explanatory model appeared particularly—although not exclusively—in the accounts of respondents whose (grand)parents had migrated as labor migrants or migrants from countries not colonized by Belgium or the Netherlands. In contrast, some of the (grand)children of postcolonial migrants in the Netherlands reported that their autism was less often attributed to their ethnic background or to “having another culture,” Unlike many respondents with a Muslim background, they felt that the colonial relationship had reduced doubts about their familiarity with the so-called dominant Dutch culture. Some of these participants felt especially confronted with the lack of representation in autism narratives (see the next section), but according to them, they were less frequently framed as the cultural “Other,” as Rabia suggested:

The fact that I’m a child of migration, that only really… I think in the past ten year, that has sunk in for me. […] I think it also has to do with Suriname having been a colony. We always had Dutch people there; they were always present, and we had to… the Dutch language was our language of instruction, our own language is forbidden. I also lost my language since we’ve been living in the Netherlands. And we were really taught to integrate and having as many Dutch friends as possible. (Rabia, 55, Surinamese background)

Irrespective of their postlabor or postcolonial migration background, many respondents also described experiencing masking not primarily due to neurodivergence, but as a response to their ER minoritized status. Autistic masking—also referred to as “compensation,” “camouflaging,” or “adaptive morphing”—involves a conscious or unconscious effort to suppress autistic traits and adopt behaviors that are perceived more socially acceptable or neurotypical.^73,74 However, participants noted that long before they recognized themselves as masking in an autistic sense, they were already masking as ER minoritized individuals, to fit in and avoid rejection or stigmatization:

And people, consciously or unconsciously, have always positioned me as different, just because of my skin colour or my religion. Uhm, and I think, in a way, I’ve masked that part of myself—my foreignness, my being Muslim. I’ve masked it, at least to some extent, in order to fit in with the dominant group, which, in this case, were White people. (Amal, 39, South African background)

Respondents were thus acutely aware of their “double consciousness”⁷⁵—their sense of seeing themselves both through their own eyes and through the judgmental gaze of a dominant White society. As they explained, many traits they now recognize as autistic were, at the time, unconsciously masked in their efforts to conform to the social norms of White-majority settings.³⁷ Khadija, among others, reflected: We [minoritized persons] have learned more than anyone else to adapt ourselves. Contrary to common stereotypes about autistic individuals, she described being highly adaptable in different social situations because, as a minoritized person, she knew that failing to do so would significantly limit her opportunities in life. Maïti also shared:

I think especially when you look at the history of Black women. There are, there are various stereotypes that Black women are expected to fit into because of racism. Black women are supposed to act really outgoing, really cheerful all the time, or they’re seen as just angry. So, it’s possible that a lot of those autistic traits don’t show up, simply because they’re so busy with everything — busy with masking, really. (Maïti, 20, Surinamese Creole background)

As such, while autistic adults may come to a diagnosis—or to the acceptance of one—after the realization that they have been consciously or unconsciously masking their autism for most of their lives, this process was not as straightforward for the ER minoritized respondents. For them, masking initially appeared to stem from their ER minoritized status, and significantly, it was something they shared with their non-autistic peers from similarly marginalized backgrounds. This highlights again how respondents already had a socially and culturally grounded explanation for their adaptation and coping strategies—one rooted in their ethnic and racial position—long before autism was considered a possible explanation for their social realities.

Autistic whiteness and its impact on self-identification

The ways in which respondents retrospectively reflected on their (self-)diagnosis and the process through which they came to accept it can offer valuable insights into the disproportionate diagnoses from a cultural perspective. Some participants were already familiar with autism before receiving their own diagnosis, yet the possibility that they themselves might be autistic had never occurred to them until adulthood—despite having experienced long-standing feelings of being different or challenges with regard to, among other things, social communication, interaction, and sensory overload. This is not only because they used to explain their experienced difficulties away by ethnicity and race, as discussed above, but also because they could not relate to public images of autism.

Zayd, Shal, Imani, and Soukaina, for example, noted that although they had studied a relevant field of study such as Psychology, Special Needs Education, or Gender and Diversity, nothing they had learned about autism had resonated with their own experiences. Similarly, Rabia, who had already read extensively about autism because her children had received diagnosis, reported that:

It’s so widely accepted that autism and ADHD are ‘boys’ conditions’. Yes, I used to go to the [Dutch] National Autism Congress every year, and parents of autistic children also performed plays, also one who had autism herself. And still, it just never clicked for me because I didn’t see myself in any of it. At the entire congress, you could count the people of colour on one hand. It’s starting to broaden a little now, but it’s still shockingly poor. So, I simply didn’t see any recognition or reflection of myself there. When I meet someone, someone of color, who also has autism or ADHD, that really gets me. I could honestly jump out of my chair, you know? I think oh yes, someone who’s part of my club. Because if you look at the global autism community, there are layers. First, you have the boys and men with autism or ADHD. Then, there’s the women with autism or ADHD. But this group, people like me, is so invisible. (Rabia, 55, Surinamese background)

Rabia refers to three interrelated experiences that also came up in several other interviews: how respondents could not suspect autism because of stereotypical conceptions, how there is a lack of representation (i.e., visibility of autistic people of color) that prevented them from finding recognizable stories or experiences, and how this lack of representation still weighs heavily in their adult life as they cannot find a community of ER minoritized autistic people to connect with.

It is evidently not new to argue that autism has been historically constructed as a White, middle-class, and male condition, and how also in popular media intellectually gifted autistic characters are predominantly White men, which is also called “autistic whiteness.”^5,6,32 As Heilker⁵ sharply argues, “[f]or someone just coming to understand that he might be autistic, for instance, his ability or inability to identify with autistic whiteness could be a powerful force in persuading him that he is or is not on the spectrum.” Nevertheless, this very likely cultural explanation is generally missing as one of the potential causes of diagnostic disparities in most models that attempt to understand how cultural factors shape ethnic and racial inequalities in the diagnosis of autism.^13,22 most likely because of cultural essentialism in the research field.¹¹ This is an unfortunate limitation in the scholarship, as my analysis indeed shows that even when they had explicitly learned about autism or were told that others suspect autism, some of the respondents could not relate to this idea because of prevailing ideas of autism as a “White condition.” When hearing from her ER minoritized driving instructor that she had autistic traits that may require her attention, Asmara, for instance, initially found it hard to believe:

Researcher: What were your ideas about autism before?

Asmara: Yeah, a bit from the show The Big Bang Theory, Sheldon… You know, the usual stereotypes about autism: no social skills, an obsession with trains… I mean, I like trains too (laughs), but those really narrow interests, I don’t have that myself. What else, yeah, really, just the stereotypical image from the media, what the media mostly presents. So, when my driving instruction said it, I just thought: No, I don’t believe you. I really didn’t believe her. […] Yeah, I also thought… This might sound really stupid, but I honestly thought “no, that doesn’t happen to brown people. That’s a White people disease.” That’s genuinely what I thought. (Asmara, 32, Indonesian background)

Not only ethnicity and race, but also gender was fundamental in this regard. It is not only the representation of autism as White, but also the stereotypical image of autism as masculine that hindered the women respondents from recognizing themselves. Larissa, who had previously been told that she should look to autism, indicated that she only began to recognize herself in this suspected diagnosis after she was presented with a more diverse picture of what autism entails on social media, as told by autistic women of color. Although she found the experiences of White autistic women interesting, she never saw them as “her story” until she was able to access diverse sources. Reflecting on her own experiences, also Amal shared:

In the Netherlands you’ve also got Kees. I don’t know if you know him, Kees Momma. There’s a documentary about him that came out a few years ago. It’s about a typical White autistic man. […] And here in the Netherlands, he’s kind of become a household name—he’s basically the figure people associate with autism. Everyone knows the documentary and knows who Kees is. And I do recognise parts of myself in Kees, but I wear a mask, which is why I don’t behave like Kees. And then I saw someone else I could maybe identify with [Sonja Silva, an autistic Dutch actress and presenter of color]. […] And years later, I thought this is an example, this confirms it’s possible [that I’m autistic]. I had already come across other women with autism, but they were all White women, and you just don’t identify in the same way, it’s still different. (Amal, 39, South African background)

The respondents’ reflections highlight that the absence of racially and ethnically diverse representations in autism discourse can delay or obstruct self-identification, and hence also diagnosis. Despite having access to information about autism, many participants struggled to see themselves in prevailing images shaped by whiteness and masculinity. Their stories point to the urgent need for broader, more inclusive representations that reflect the full spectrum of autistic experiences.

Concluding Remarks

In more critical strands of research—particularly within cultural sociology and social anthropology—it is widely recognized that a significant finding on ethnic or racial dummy variables does not imply that the underlying explanations are ethnic or racial in nature. As Wimmer⁷⁶ argues, what appears to be an ethnic or racial effect “should represent the beginning—not the end—of the explanatory endeavour, because there might be several mechanisms through which ethnic background affects individual outcomes, all of which might be causally independent of […] ethnic culture and the like.” Yet, in autism research, the prevailing assumption remains that cultural explanations for ethnic and racial inequalities in diagnosis are to be sought primarily in ethnoracial-specific beliefs and attitudes of ER minoritized populations. Consequently, research on cultural influences tends to focus narrowly on how the presumed norms and attitudes of these groups create obstacles to autism identification.¹¹

This article challenges such culturally essentializing approaches and demonstrates how a nonessentialist cultural analysis, grounded in a broader definition of culture, can enrich our understanding of ethnic and racial disparities in autism identification. Rather than examining how ER minoritized groups purportedly make sense of autism “differently” from the White majority, it explores why, how, and under what conditions ethnicity and race became salient for respondents reflecting on their late autism identification. Moreover, this study did not assume that respondents’ narratives should be interpreted through a predefined “ethnic” or “racial” culture. Rather, it understood them as speaking from a socially marginalized position: ethnicized as non-Dutch or non-Belgian and racialized as non-White. In this sense, they speak from a political position.

This perspective reveals that, according to participants, it was not primarily “group-specific” attitudes and behaviors that hindered diagnosis, but rather broader processes of ethnic and racial categorization that construct ER minoritized groups as inherently different, alongside the cultural framing of autism through what has been described as “autistic whiteness.”^5,6,31 The impact of autistic whiteness on ER minoritized groups’ self-identification has been rightly discussed under the heading of “structural racism”¹ but it must be said that the way in which these representations operate is fundamentally a cultural mechanism. If we fail to recognize these representations, classifications, and meaning-making processes as forms of “culture” as well, we risk reinforcing outdated, essentialist, and problematic understandings of culture and minoritized groups.²⁶

The results of this study also highlight the urgent need to expand research on ethnic and racial inequalities in autism beyond the Anglophone contexts of the United States and the United Kingdom. I argue that autism research suffers not only from “color blindness” but also from “context blindness”. Because autism—and thus autism inequalities—must be examined within their specific sociopolitical contexts,⁴⁴ current critical literature cannot be applied uncritically to continental European settings that present themselves as “raceless” and where race remains an “absent presence.”⁷⁷ My findings suggest that, in contexts where racialization and ethnicization operate through essentializing discourses of “culture,” “norms,” and “values,” Muslim respondents in particular felt that their autism was dismissed or misattributed to their ethnicity and race, owing to assumptions that their values and norms fundamentally diverge from those of the dominant society, and that it is therefore unsurprising that they differ from the dominant norms. Furthermore, although recent years have seen substantial scholarly efforts to propose strategies for addressing racial disparities in autism research, these recommendations remain largely confined to the context of mainly the United States.^1,43 As a result, they offer little to no consideration of issues such as the racialization of Muslims—although also evident in the United States²¹—and its implications for diagnostic inequalities.

Finally, this study echoes Souza Benedetto’s³⁷ call for greater attention to intersectional experiences in research on autistic masking by effectively including ER minoritized autistic adults (rather than caregivers) in research. Most interviewees recognized that they had camouflaged their perceived “non-normativity” throughout their lives, but many assumed they were masking behaviors deemed “non-normative” specifically because of their ethnic and racial backgrounds. Despite a few notable exceptions,^20,37 research on autistic masking has largely adopted a “color-blind” approach, overlooking the intersectional experiences of ER minoritized groups. Moreover, although also masking can only be fully understood in relation to the social realm⁷⁸ and structural inequalities such as racism and colonialism,^75,79 again, limited attention has been paid to how particular forms of racial and ethnic stratification across different societal contexts shape masking experiences among autistic people.⁷³ Emerging studies show that ER minoritized autistic individuals may experience “double” or “dual” masking,³⁷ camouflaging both their neurodivergence and their difference from White norms, or even “triple” masking²⁰ in the case of autistic minoritized women, who also face gendered expectations. This study contributed to this body of work by exploring how minoritized autistic people made sense of their masking behaviors before and until (self-)diagnosis, before they were able to frame these behaviors through the lens of autism or neurodiversity.

Finally, it is important to repeat—as noted in the Introduction section—that this article does not provide a comprehensive overview of all the possible cultural factors that result in late identification of autism among ER minoritized groups. Instead, it highlights two broad cultural processes that are underrepresented in the existing literature on “cultural factors.”^13,22 I therefore call for further cultural analysis—one that does not reduce “culture” to the inherent beliefs, attitudes, norms, and perspectives of ER minoritized groups, but rather views culture as the totality of meaning-making processes—to be applied in qualitative research among ER minoritized groups, to achieve a more refined and nuanced understanding of the cultural pathways to autism inequalities. In doing so, it is essential to move away from deficit models of explanation toward recognition models, to challenge and counter the ethnic and racial biases that persist not only in diagnosis but also in autism research itself.

Footnotes

Authorship Confirmation Statement

I.K.: Conceptualization, data curation, formal analysis, funding acquisition, investigation, methodology, project administration, resources, writing—original draft, and writing—review and editing. The article has been submitted solely to Autism in Adulthood.

Author Disclosure Statement

The author declares no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding Information

The author discloses receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by a postdoctoral fellowship from the Research Foundation Flanders (FWO) [grant number 1246725N], and a fellowship from the Discovery Research Platform for Medical Humanities, Institute for Medical Humanities, Durham University, which has been funded by Wellcome under grant reference 226798/Z/22/IK.

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