“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?

1. 1.

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

2.

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

3.

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

4.

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