Autism diagnosis and racism

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This story was reported through conversations with autism resources specialists, service providers, pediatricians, researchers and caretakers

Black children with autism have been disadvantaged from the beginning. The first systematic description of early infantile autism, published in 1943, was based on studies of white children, mostly male. White males have continued to be overrepresented in scientific studies on autism since.

Autism doesn’t discriminate between race or gender, but how it presents might. Typical screenings are more likely to capture autism in white male children in part because those are most of the children being studied.

In contrast, the participant pool in Exume’s study included 160 Black parents and caretakers. This is what her team has found:

Black children diagnosed with autism tend to have more severe clinical presentation than white children, suggesting that Black children with less impairing symptoms may be missed altogether. These diagnostic disparities may reflect providers’ racial biases.

Exume said when Black caretakers report their concerns, their providers often disagree on the presence of autism spectrum disorder symptoms. Many Black families in her study said their provider expressed doubts about their knowledge of autism or made incorrect assumptions about their family structure or income.

The first step to easing access to services for all Black families, regardless of income or insurance coverage, is quicker diagnosis. Exume’s team is developing recommendations to close the gap.

Screenings should be frequently available, throughout urban and rural areas, and in multiple languages, including Creole. They should use checklists that demonstrate diagnostic efficacy across racial and ethnic backgrounds.

Educational material and resource packages specific to early symptoms of autism spectrum disorder, both text and video, in English and Creole, should be easily available, free of difficult jargon, and include photos of Black families.