Autism’s Race Problem

May 26, 2016

 

Like many parents, Camille Proctor went to her first support group for parents of children with autism to feel less alone. Her son Hunter had just been diagnosed, and Proctor had lots of questions. All of the other parents at the various support groups she went on to visit were white; Proctor is African-American. When she asked questions about how she should teach her son to interact with police, given that the wrong response by a black boy or man could be deadly, she just got blank stares.

“They had no idea how to respond,” Proctor said.

For its part, she says, the black community didn’t seem to understand what it was like to raise a child with autism. Her son Hunter’s repetitive behaviors, like flapping his hands and rocking back and forth (known as “stimming”), and emotional meltdowns were seen as bad behavior rather than signs of autism.

When her son was screaming in Macy’s because he was overstimulated, a black salesperson went up to Proctor and told her Hunter “just needed his butt whipped.” Proctor felt utterly alone and misunderstood. Her dogged determination ultimately got her son the services he needed to thrive, but she knew other parents weren’t as lucky. She also knew that many other black children had autism just like Hunter, and that they were probably feeling just as isolated and scared as she was.

Not long after Hunter was diagnosed, Proctor founded the Color of Autism, a support group dedicated to helping other minority families affected by autism. The autism world prides itself on honoring neurodiversity, but it has been less successful at recognizing racial and ethnic diversity.

The statistics are stark: Studies by the Centers for Disease Control and Prevention show that rates of autism are essentially identical across racial and ethnic groups. But when you look at children and adults actually diagnosed with autism, white children are 30 percent more likely to receive an autism diagnosis than blacks, and 50 percent more likely than Hispanics, according to 2014 data from the CDC. Minority children are also diagnosed significantly later than white children.

In some of the first clinical descriptions of autism, psychologist Leo Kanner wrote that many of the families who sought his opinion were white and middle- to upper-class. What Kanner failed to consider was that the parents who had the resources to seek out a specialist about their child’s developmental problems were likely those with resources to begin with.

In 1940s America, those parents were almost exclusively white, and ever since, has been treated largely as a white disease. Even when autism began to reach wider public awareness and understanding in the 1980s — especially after the movie Rainman — many Americans continued to assume that the condition only affected white people.

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