Studying Ethnic and Racial Disparities in Autism Identification and Diagnosis in the U.S.

Imane Kostet was a Belgian 2023-2024 Research Scholar in Sociology at the University of Pennsylvania. Dr. Kostet is a postdoctoral researcher and guest lecturer at the Department of Sociology of the University of Antwerp. In her doctoral dissertation, she examined how a diverse group of children living in super diverse cities deal with the ethnic and social class inequalities in their environment. Both in her research and in her volunteer work, Imane has always been strongly committed to addressing these inequalities.

Q: “Can you briefly describe your grant project?”
As a Fulbright postdoc fellow at the University of Pennsylvania, I conducted research on ethnic and racial disparities in the identification and diagnosis of autism. Given that little is known about the cultural sociological causes of these disparities, I examined the impact of how the categories “autistic people” and “racial/ethnic minorities” are publicly imagined in relation to each other, and how people on the spectrum themselves reproduce narratives about the intersection of autism and ethnicity/race.

Q: “How did you hear about the Fulbright Program?”
I have heard about the Fulbright Program through my university and some alumni. My main motivation was the fact that I was very eager to specialize in autism disparities from a sociological perspective, and autism research is very advanced in the USA, making the context highly stimulating for early career researchers. In addition, I was particularly attracted to the Fulbright Program because of its societal mission, such as promoting social justice. The selection process was evidently very competitive, but I appreciated the space for creativity and personality during this procedure. I was able to deviate from the ‘classic’ academic language and show who I am as a person and what I want to achieve as a member of my society.

Q: “What have you accomplished during your time in the USA? What can you tell us about the initial outcomes of your program?”
At UPenn, I have conducted an in-depth literature review of how autism studies conceptualize ‘ethnicity’, ‘race’, and ‘culture’. Based on this research, I am currently finishing an academic article in which I discuss how many of these studies draw on ethnic and racial categories, as well as the notion of ‘culture’, in conceptually underdeveloped ways. As a result, autism research perpetuates an essentialised view of minoritised ethnic and racial groups, promotes a deficit model of explanation as minoritised groups’ ‘culture’ is framed as a barrier to adequate diagnosis and social service support, and importantly, thereby neglects how a much broader range of cultural factors contribute to autism disparities. I also conducted in-depth interviews with autistic people of color to empirically demonstrate how narrow perceptions of ‘culture’ do not adequately explain the observed disparities.

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Q: “Has the United States been what you expected? In what ways has life in the USA surprised you, either for its similarities to or differences from your own culture?”
It was not my first time in the U.S. I had been in New York and Los Angeles before embarking on this fellowship. However, the country’s diversity ensures that each visit brings new experiences and surprises. During this 9-month stay, which was long enough to travel to other cities, I was pleasantly surprised by how many places you can reach by train, challenging the cliché of the U.S. as a “car country”. While it is certainly true that Belgium’s train system is more extensive and faster, I was still able to explore a significant part of the U.S. by train. The variety of landscapes you encounter while traveling by train is truly phenomenal.

Q: “What has been your favorite “discovery” in the USA?”
As mentioned earlier, the variety of landscapes you pass through by train was one of my favorite discoveries. Additionally, I was very impressed by the opportunities for young people to engage in typically expensive cultural activities (such as classical concerts). Unlike in Flanders, where many cultural institutions are subsidized and entrance fees are more affordable (at least for a middle-class audience), attending concerts and similar events in the U.S. can be costly. However, many cultural institutions and philharmonic orchestras offer substantial discounts for young people under 40. This enabled me to participate in more activities than I had expected and meet new people along the way.

Articles are written by Fulbright grantees and do not reflect the opinions of the Fulbright Commission, the grantees’ host institutions, or the U.S. Department of State.