In The Politics of Autism, I write about the experiences of different economic, ethnic and racial groups. Inequality is a big part of the story.
In two separate studies of Black families with autism, partially funded by SPARK, investigators from Vanderbilt University and the University of Arkansas found that cultural barriers, stigma, and a basic lack of understanding of autism often led to delays in seeking an initial diagnosis. What’s more, when Black families did seek an evaluation or tried to access services, many experienced cultural bias and overt racism. Both studies underscore the role of misinformation, misperception, and misunderstanding in perpetuating false narratives about autism and increasing the amount of anxiety parents felt about receiving a diagnosis.
The Vanderbilt study documents the lived experience of 400 Black or multiracial families seeking care. In it, one in 10 parents said they delayed seeking an evaluation for their child because they simply did not know enough about autism and its signs. When Black parents did seek help, they often encountered a system misaligned with their needs. Parents noted evaluations that relied on toys and activities their children weren’t familiar with, clinicians who didn’t understand their culture, and a scarcity of available, affordable resources within their communities.
