New research suggests delays in autism diagnosis in black children may reflect racial bias among providers Report for America

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This story was told through conversations with autism resource specialists, service providers, pediatricians, researchers and caregivers. Click here to access resources for people caring for children with autism.

Yvonne Westerman’s grandson was fine at 15 months. He ate it all. He responded to his name, Chance. He said words. Until the day he didn’t.

She took him to the doctor, who told her everything was fine; Chance was just developmentally delayed.

But Westerman thought it was something more. She did her own research. She learned that with the label “developmental delay” instead of an autism diagnosis, it would be harder to get services like behavioral therapy. No one had told her that, she said.

Westerman, who lives in Boynton Beach, said she ‘pushed and pushed’ until she finally found a doctor in Miami who examined Chance and diagnosed him with autism spectrum disorder when he was almost two years.

“Nobody wanted to say it. I had to demand it,” Westerman said.

Westerman beat the averages. black children usually are diagnosed with autism a year and a half later than white children, after significantly more provider visits.

They are also more likely to be misdiagnosed with developmental disabilities and emotional and behavioral disorders first, creating an even longer delay.

Torica Exume leads a team of researchers from Florida Atlantic University’s Center for Autism and Related Disabilities who have spent the past year answering the question: Why?

The stakes are high. An accurate diagnosis is the key to unlocking the right services, and for children with autism spectrum disorders, early intervention is key.

Torica Exume leads the team of researchers from Florida Atlantic University who are trying to understand why diagnostic delays exist for black children. (Courtesy of Exume)

Social skills and language are most easily taught young, before habits are formed, while children are still learning naturally and can tolerate long hours of behavior therapy better. Every year counts.

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

Autism does not discriminate between race or gender, but how it presents. Typical screenings are more likely to capture autism in white male children in part because these are the most children studied.

In contrast, Exume’s study participant group included 160 black parents and caregivers. Here’s what his team found:

Black children diagnosed with autism tend to have a more severe clinical presentation than white children, suggesting that black children with less disabling symptoms can be overlooked altogether. These diagnostic disparities may reflect the racial biases of providers.

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

All of this contributes to delaying diagnosis and proper treatment, something Westerman is still looking for six years later.

There are more TV shows featuring autistic characters than ever – The Good Doctor Atypical, Everything will be fine, to name a few and Westerman is frustrated. The people they portray are almost exclusively high-level (and white) people: brilliant surgeons or scientific illustrators or pianists.

She wonders if people know what it’s like to take care of kids like Chance, who turns 8 this weekend but stays non-verbal and wears nappies.

This is how every minute of your day is an all-out battle to meet basic needs.

This is how every minute of your day is an all-out battle to meet basic needs.

It is more difficult for Chance to sleep. She can’t put him to bed until 3 am and she still hears noises for the next hour. They had to tie up the fridge so it wouldn’t spill stuff in the middle of the night.

He may fall asleep an hour or two later, but he wakes up in the late morning.

The minute Chance is up, Westerman needs to be on his feet, keeping him out of trouble, which is everywhere — in the street where he tends to run, thinking the chase is a game, and in the bottle of rubbing alcohol he wants to taste. He is always on the move.

Brushing your teeth is a half-hour struggle. His own teeth come second.

Heightened sensitivities and the inability to say what he wants make food tricky. Chance likes Domino’s pan pizza, cheese only, a little extra sauce, but it has to be perfect. Make him try a new food — the slices of bread he is carrying now, the grated cheese he finally gave in to on a salad he has yet to taste — is a huge victory. She is always afraid that he is not eating enough.

Then it’s out the door and into the car, both overlaid with warnings that an autistic child is present, who may not respond to verbal commands, who may resist help. Stickers are a desperate attempt to avoid statistics; The chance is much more likely meet the police than a neurotypical person, and thrice more likely than a white man to be killed by them.

His twice-weekly therapy is half an hour away, roughly the maximum amount of time Chance can tolerate a confined car ride. It’s a common barrier for people trying to access services who don’t live in big cities.

Nights and weekends, when other family members take care of Chance, Westerman works. The pull-ups cost at least $60 a week, on top of his other necessities like the bottles he still uses for drinking.

Five minutes to sit during the day is a small miracle. When is she supposed to google how to get funding for the car harness Chance needs? What time does she have for Zoom meetings with Autism Resource Specialists?

She said she had already been through several therapists; bureaucracy and insurance circles have made good therapists hard to find and harder to retain.

Westerman doesn’t want just anyone working with Chance.

She wants someone who will be patient and not use restraints on him.

Chance is not difficult. Chance is a child, senses overloaded, with no way to communicate the pain or the problem, powerless in the face of the environment around him.

Because he has no words, sometimes he throws himself against the hard ground or hits himself with his own fists.

There are a limited number of service providers who will accept Medicaid, with waiting lists often ranging from six months to a year.

“We cry a lot,” Westerman said. ” I do not know what to do. I want him to be okay. And I know if it’s like that with us someone who doesn’t like it, they won’t have any patience for it.

black families are more likely than white families to be enrolled in Medicaid, as Chance is. There are a limited number of service providers who will accept Medicaid, with waiting lists often ranging from six months to a year. Affordable alternatives to Medicaid generally don’t provide the kind of coverage kids like Chance need.

She noticed what some guards around her have. How did they get this tablet that allows non-verbal children to communicate? How did they get consistent, quality therapy so many years before her? She saw their children learn to talk, use the potty, enroll in school.

Yvonne Westerman needs help. And she doesn’t have time to get it.

The first step to making it easier for all Black families to access services, regardless of income or insurance coverage, is faster diagnosis. The Exume team is developing recommendations to close the gap.

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

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

His team’s outreach specialist walked the sidewalks in the communities of Broward, Palm Beach and Treasure Coast, raising awareness and inviting caregivers to their support group for caregivers of black children with autism, which Westerman attends.

They are in the final stages of renewing the grant to expand their project’s efforts across the state.

Meanwhile, Westerman catches as much sleep as she can before another day chasing Chance.

His dreams for him are simple but profound: that he learn to understand people and make himself understood. That one day he can go to school again with other children. That he can have a life.

Until then, she will keep him safe.

JHere are recommendations for caregivers based on interviews with service providers, researchers, pediatricians and other caregivers:

  • If your child has any unusual traits, such as lack of speech or poor eye contact, get screened to rule out autism.
  • Behavioral therapy can benefit children even if they don’t end up with an autism diagnosis, and it’s never too late to start.
  • You have the right to a second opinion and as many autism screenings for your child as you want. You may need to see multiple health care providers in the quest for an accurate diagnosis. Screenings are also often available at schools or local resource fairs.
  • Your child has the legal right to an education of the same quality as any other child. Advocate for their particular needs during the process of creating their Individualized education program. You may need to be persistent.
  • If your insurance doesn’t cover something your child needs, let them know.
  • Contact your local center for autism and related disabilities. It’s free, and the staff can help connect you to resources and offer one-on-one assistance. In North Central Florida, call (352)-265-2230 to reach the center at the University of Florida.
  • To verify Autism Navigatordeveloped at Florida State University, which offers a range of tools and information to help you detect autism and connect to services.
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