Racial Inequities Leave Black Children Out of Early Autism Interventions
It took Kisha Gulley, of Phoenix, nearly a year and half before anyone took her worries about her son's developmental delays seriously, and another year before he received an autism diagnosis.
"I knew early on that my son's speech was delayed and that kids should be hitting certain milestones. But when I'd mention to my friends that he wasn't saying anything, they thought I was overreacting. They'd say things like, 'Boys always take longer to talk than girls' or 'He'll speak in his own time' or 'It's because you're talking to him in Spanish.' I was being treated like an overprotective first-time mom," says Gulley, a Black Latina mom of two. That skepticism led her to hold off on getting an evaluation for her son until he was 3 1/2.
Research shows that Gulley's experience could have been worse. A 2020 study of more than 500 Black children enrolled in the Autism Genetic Resource Exchange, a nonprofit DNA repository and family registry available to autism researchers, found they were diagnosed at 65 months, on average, and about 42 months after their parents initially expressed concern about their development. Although the average age of all children who receive the diagnosis of autism spectrum disorder is a little under 4 1/2, according to the Centers for Disease Control and Prevention, Black children are currently diagnosed about six months later." That is very late in development," says John Constantino, M.D., director of the Intellectual and Developmental Disabilities Research Center at Washington University School of Medicine in St. Louis.
"The racial inequities in access to services are pronounced, and they severely aggravate the general delay." Pediatricians in the trenches say Black children often don't get diagnosed until school age.
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In a perfect world, a child would routinely get developmental screenings by their pediatrician at every well visit starting at birth, with a specific screening for autism at 18 months, says Audrey Brewer, M.D., a pediatrician at Ann & Robert H. Lurie Children's Hospital of Chicago. If there are concerns about a child at those visits, they can be referred to a developmental-behavioral pediatrician or other expert for further evaluation. "When children get developmental therapy of appropriate duration and intensity, evidence shows that it absolutely improves their cognitive and adaptive outcomes," Dr. Brewer says. But the process can be slowed when parents have trouble getting a referral or finding a specialist in their medical plan, Dr. Brewer adds. For a family of any background, a two-year wait for an autism evaluation isn't uncommon, nor is having to travel a long distance if there are only a limited number of providers in their state.
Researchers at Boston University School of Medicine found that Black children are five times less likely than white children to participate in early intervention, the free services administered by each state that include speech therapy, occupational therapy, and educational sessions for children under age 3 who display developmental delays. The path to getting that support is littered with roadblocks. The key to being eligible for such services is having a child's developmental delays recognized before age 3. But because information about these programs is not widely available, not every parent is aware they exist, especially in communities that have been historically underserved. On top of that, parents who feel their child would benefit from support may not realize they can receive free services even without a doctor's recommendation or an official autism diagnosis. And for working parents, taking a child to get the help they need with any regularity may be difficult.
"The gap between a child who has and has not received services gets wider and wider the older a child gets," says Parents advisor Adiaha Spinks-Franklin, M.D., associate professor of pediatrics at Baylor College of Medicine. "They become more likely to display disruptive behaviors because they and their parents didn't get the help they needed early on." A late diagnosis also places a greater financial burden on parents who weren't able to take advantage of free treatment.
Without early intervention, a child's challenging behaviors are often misunderstood. Far too frequently, a Black child will be seen as having a disciplinary problem rather than a developmental delay, says Maria Davis-Pierre, a licensed mental health counselor and founder of Autism in Black. As a result, the child may never receive the necessary tools to thrive, upping their risk of being shunted into the school-to-prison pipeline.
According to the Civil Rights Data Collection, a bank of education data collected from the nation's public schools, Black students with disabilities represent 18.5 percent of students with disabilities under the Individual With Disabilities Education Act, but they make up 29 percent of students with disabilities referred to law enforcement and 35 percent of students with disabilities subjected to school-based arrest.
Effects of Systemic Racism
When Black parents try to enlist help for their children, medical professionals often don't take their concerns seriously—a form of implicit bias that can play a significant role in medical outcomes for Black people in general. When researchers at Johns Hopkins School of Medicine evaluated more than 9,000 notes in the medical records of one clinic, they found that doctors were more likely to use judgmental words that suggested skepticism (such as"claims" and "insists") for Black patients than for white patients, and that Black patients were more likely to receive lower quality of care.
When it comes to developmental delays, a pediatrician may dominate the conversation and ask Black parents fewer questions, Dr. Spinks-Franklin says, even when their child is at high risk. "Simply asking parents what their expectations are about normal development would give them the opportunity to voice their concerns and discuss issues that need to be addressed," Dr. Spinks-Franklin says.
Breanna Major, a social worker in Aurora, Colorado, and mother of an 8-year-old daughter on the spectrum, says that her family's experience was a clear case of implicit bias and racism. Major always suspected something was different about her daughter from infancy and started trying to get help for her at age 2, but she didn't receive an autism diagnosis until her daughter was 6. After being bounced around to different agencies by her health care provider, she was unable to convince anyone her daughter might have autism. Instead, she faced questions about her own aptitude and was directed to programs to improve her parenting skills.
"They made it seem like it was my fault and even asked culturally insensitive things such as how often I washed my daughter's hair," Major says. During a visit to her own doctor, who is also Black, Major expressed her frustration about not being able to find help for her daughter. "My doctor said, 'I think you're being discriminated against because you're a single Black mother,' " Major says.
"When I finally met with an evaluator at a children's hospital, I was told that my daughter's prior evaluations had been enough to get her a diagnosis, and it wouldn't have been a problem if I were white," Major says. She says she's filed an official complaint and shared her story with a regional administrator to address concerns regarding bias and providers' cultural competency.
Not only is there cause for Black people to be wary of the medical establishment, but kids with autism have behavioral issues that legitimately make parents uncomfortable about how they will be viewed in health care settings, says researcher Emily Feinberg, Sc.D., a clinical nurse-practitioner and associate professor of pediatrics at Boston University School of Medicine. A child might bolt from their parents, for example, or struggle with clothing textures due to sensory issues.
That was a feeling Major was very familiar with when attempting to get a diagnosis for her daughter. "At each appointment during the evaluation process, I made sure we were both well-dressed and her hair was combed well," Major says. "I didn't want to give them any reason to suspect that I was a negligent parent." In fact, a study by Dr. Feinberg and her team found that Black mothers worry that discussing their own mental health challenges could trigger the involvement of child protective services—findings that suggest similar fears could also be a barrier to discussing concerns about their child's development.
A Sense of Stigma Among Friends and Family
Compounding the problems parents often face in health care settings are ones they can experience closer to home. Not all parents know what the signs of autism and other developmental disorders look like, Dr. Feinberg says. A study in Pediatrics found that Black mothers were more likely to consider their child to be "just different and developing on their own time" rather than developmentally delayed.
However, parents like Gulley, who do have concerns, may delay seeking help out of fear of being judged by family and friends, Dr. Brewer notes. When a child has behavioral issues associated with autism—such as not responding to their name, having a limited vocabulary, losing previously learned skills, and having meltdowns—some Black parents say it's common to hear skeptical remarks from elders and peers. "When people see my son behaving a certain way, they make comments—like I'm not disciplining him enough or that I'm using some kind of new-age parenting style," Gulley says. "In my community, people love using social media to call out another Black mom who let her son yell and have a tantrum in the store."
It can be understandably hard for parents to address worries about their child when they get conflicting information from family and friends who believe there's stigma associated with autism and disability, says Davis-Pierre. Kenya Eaton, a mother of four in San Dimas, California, didn't receive an autism diagnosis for her son until he was 3, even though she'd raised concerns with their pediatrician when he was 18 months. Not only did she get pushback from relatives about her suspicions, but even her husband gave a contradictory account of her son's behavior to the pediatrician, making it more difficult for Eaton to get a referral for an evaluation.
"Black communities typically know less about autism, so their radar may not go off when they see certain behaviors," Dr. Spinks-Franklin says. "Doctors need to take the same educational messages about developmental delays that they deliver to white families and target them to minority communities."
And those messages should ideally be delivered by trusted sources. A history of medical discrimination can make it hard for some Black families to accept information conveyed by a source they believe to be untrustworthy, Dr. Spinks-Franklin notes, and accepting advice that one's child would benefit from special services can be more difficult when it comes from someone who doesn't look like you. Yet currently only 4 percent of speech-language pathologists are Black, 3 percent of occupational therapists identify as non-white, and less than 10 percent of developmental pediatricians identify as a minority.
Sending the Right Health Messages
Eliminating racial disparities in the medical system is a tall order, one that requires systemic changes. But there are some concrete ways to help make sure that all children get the diagnosis and treatment they need. For starters, public-health campaigns about developmental milestones and delays should target people of color in a way that makes them feel seen, Dr. Spinks-Franklin says. "Posters in pediatricians' offices need to represent every community they serve. You can't have a picture of a blond-haired, blue-eyed girl with autism and expect Black and brown people to think it applies to their kids too."
Initiatives similar to those waged to educate communities about COVID-19 and vaccination could also be beneficial when it comes to autism and other developmental delays, Dr. Brewer notes. That may mean health experts visiting churches, traveling to underserved communities, and hosting events after hours to accommodate varied work schedules."The more we're able to provide access to different services—whether it's health fairs, drives at libraries, or evaluations at day cares and schools—the more we can improve health equity," Dr. Brewer says.
Creating safe spaces for Black families within health-care settings will go a long way toward reversing feelings of always being judged, Davis-Pierre says. And the more everyone learns about autism and delays, the more parents will be supported (not blamed) by their peers, their village, and society—and the sooner more children on the spectrum will have the opportunities they deserve.
Resources for Black Families in the Autism Community
Autism in Black
(autisminblack.org) provides support for parents and hosts the Autism in Black podcast.
The Color of Autism Foundation
(thecolorofautism.org) helps families identify early warning signs and get culturally competent support and services.
Holly Rod Foundation
(hollyrod.org), founded by Holly Robinson Peete and Rodney Peete and inspired by their son who has autism, provides resources to families affected by an autism diagnosis.
When Family and Friends Question Your Concerns
If you find yourself on the defensive when you share worries about your child's development, Dr. Adiaha Spinks-Franklin suggests these responses:
- "Children with speech delays are more likely to struggle with learning how to read and make friends. I don't want my child to have those problems, so I am going to talk to the pediatrician about getting help for them."
- "I would rather be safe than sorry. I am worries about my child's development, so the wise thing for me to do is to ask the doctor to help us find the support they need, so they can be as successful as possible in life."
- "I know Uncle Jerry was a very late talker and that he has a hard time in school. He didn't have access to the kinds of help and resources that we have today. We don't want our child to struggle more than they have when there are many ways to help them while they're young."
- "When we know better, we do better. We didn't wear seat belts in the 1970s, but now we do. They used to use lead paint until we learned it wasn't safe. Now we know that developmental delays can be a sign that something is seriously wrong, and we have resources to help children."
This article originally appeared in Parents magazine's December 2021 issue as "The Spectrum of Care." Want more from the magazine? Sign up for a monthly print subscription here