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Saturday, August 6, 2022

Underserved Communities and Autism

In The Politics of Autism, I write about the experiences of different economicethnic and racial groups.   Inequality is a big part of the story

At CNN, Kathleen Toner reports on Illinois autism mom Debra Vines:
“My whole life revolved around finding services for Jason. To be able to get any type of assistance I had to take a train, plane, bus, and a magic carpet to get there,” she said. “Multiple cocktails of medication, changing doctors, changing hospitals. And most of it I did alone because my husband worked nights. I felt totally helpless.”

The support groups that she did find were in affluent communities. Not only was it hard for her to get to without a car, but when she did arrive, she felt out of place.

“I was the only Black woman there, I was the only person that had low income,” she said. “The women – they were great. They were giving me resources. But they would say, ‘They only cost $500.’ And I’m trying to figure how I’m going to get groceries for next week. Imagine how I felt then – even more helpless.”

In 2007, Vines and her late husband, James Harlan, created The Answer Inc., a nonprofit that supports families in underserved communities who’ve been impacted by autism. To date, Vines says the group has provided programming and guidance to more than 4,000 families in the Chicago area.

“Families are always asking questions, and we want to provide the answers,” she said. “I would say 95% of everything that we provide is a blueprint of what I was missing as a parent.”

Many of those who Vines supports are from Black and Brown communities – a demographic known to face hurdles in the diagnosis and treatment of autism. The CDC reports that Black and Hispanic children are less likely to be identified with the condition, and researchers at Boston University found that Black children are five times less likely to receive early intervention services than white children – due in part to racial bias and cultural stigma.