This story was reported through conversations with autism resources specialists, service providers, pediatricians, researchers and caretakers. Click here to jump to resources for caretakers of children with autism.
Yvonne Westerman’s grandson had been doing well at 15 months. He ate everything. He responded to his name, Chance. He said words. Until the day he didn’t.
She took him to the doctor, who she said told her nothing was wrong; Chance was just developmentally delayed.
But Westerman thought it was something more. She did her own research. She learned that with the label “developmentally delayed” instead of an autism diagnosis, it would be harder to get services like behavior 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 screened Chance and gave him a diagnosis of autism spectrum disorder when he was close to two years old.
“Nobody was willing to say it. I had to demand it,” Westerman said.
Westerman beat the averages. Black children usually obtain a diagnosis for autism one and a half years later than white children, after many more provider visits.
They are also more likely to get misdiagnosed first with intellectual disabilities and emotional and behavioral disorders, creating an even longer delay.
Torica Exume leads a team of researchers at the Center for Autism and Related Disabilities at Florida Atlantic University who have dedicated the last year to 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 disorder, early intervention is critical.
Social skills and language are more easily taught young, before habits have been formed, while children are still naturally learning and can better tolerate long hours of behavior therapy. Every year counts.
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.
All of this contributes to delays in diagnosis, and appropriate treatment — something Westerman is still seeking six years later.
There are more TV shows featuring characters on the autism spectrum than ever — The Good Doctor, Atypical, Everything’s Gonna Be Okay, to name a few — and Westerman is frustrated. The people they depict are almost exclusively high-functioning (and white): brilliant surgeons or scientific illustrators or pianists.
She wonders if people know what it’s like to care for children like Chance, who turns 8 this weekend but remains non-verbal and in diapers.
This is what it’s like for every minute of your day to be an all-out battle to meet basic needs.
It’s harder for Chance to sleep. She can’t get him into bed until 3 a.m., and she still hears noises for the next hour. They’ve had to tie off the fridge so he won’t pour things out in the middle of the night.
He might fall asleep an hour or two later, but he’s up again by late morning.
The minute Chance is up, Westerman has to be up, keeping him out of trouble, which is everywhere — in the street where he’s apt to run, thinking the chase is a game, and in the bottle of rubbing alcohol he wants to sample. He is always on the move.
Teeth brushing is a half-hour fight. Her own teeth come second.
Heightened sensitivities and the inability to say what he wants makes food tricky. Chance likes Domino’s pan pizza, cheese only, a little extra sauce, but it has to be just right. Getting him to try a new food — the bread slices he now carries around, the shredded cheese to which he has finally ceded atop a salad he hasn’t yet tried — is an enormous victory. She is always worried he’s not eating enough.
Then it’s out the door and into the car, both plastered with warnings a child with autism is present, who may not respond to verbal commands, who may resist help. The stickers are a desperate attempt to avoid the statistics; Chance is much more likely to encounter police than a neurotypical person, and three times more likely than a white person to be killed by them.
His bi-weekly therapy is a half-hour away, about the maximum time that Chance can tolerate a confining car ride. It’s a common barrier for people trying to access services who don’t live in major cities.
On the nights and weekends when other family members take care of Chance, Westerman works. Pull-Ups are at least $60 every week, in addition to his other needs like the bottles he still uses to drink.
Five minutes to sit down 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 has been through several therapists already; bureaucracy and insurance hoops have made good therapists hard to find and harder to maintain.
Westerman doesn’t want just anyone to work with Chance.
She wants someone who will be patient and won’t use restraints on him.
Chance is not being difficult. Chance is a child, senses overloaded, no way to communicate the pain or the problem, powerless over the environment around him.
Because he does not have words, sometimes he flings himself against the hard floor or hits himself with his own fists.
“We cry a lot,” Westerman said. “I don’t know what to do. I want him to be OK. And I know if it’s like this with us — somebody who doesn’t love him, they’re not going to have any patience for that.”
Black families are more likely than white families to be enrolled in Medicaid, as Chance is. There are limited service providers that will accept Medicaid, with waiting lists often six months to a year long. Affordable alternatives to Medicaid don’t usually provide the kind of coverage children like Chance need.
She’s noticed what some caretakers around her have. How did they get that tablet that allows non-verbal children to communicate? How did they obtain quality, consistent therapy so many years before she did? She’s watched their children learn to speak, use the potty, enroll in school.
Yvonne Westerman needs help. And she doesn’t have time to get it.
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.
Her team’s outreach specialist has been walking the sidewalks of communities in Broward, Palm Beach and Treasure Coast, raising awareness and inviting caretakers to their support group for caretakers 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 grabs what sleep she can before another day of chasing Chance.
Her dreams for him are simple but profound: that he learns how to understand people and to make himself understood. That one day he can go to school with other children again. That he can have a life.
Until then, she will keep him safe.
The following are recommendations for caretakers based on interviews with service providers, researchers, pediatricians, and other caretakers:
- If your child displays any unusual traits, like lack of speech or low eye contact, request a screening 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 to as many screenings for autism for your child as you’d like. You may need to see multiple healthcare providers in the quest for an accurate diagnosis. Screenings are also often available at schools or local resource fairs.
- Your child has a legal right to an education at 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 pushy.
- If your insurance doesn’t cover something your child needs, make them aware.
- Contact your local Center for Autism and Related Disabilities. It is free and staff can help connect you to resources and offer individual assistance. In north central Florida, call (352) 265-2230 to reach the center at the University of Florida.
- Check out Autism Navigator, developed at Florida State University, which offers an array of tools and information to help you spot autism and get connected to services.