U.S. Parents Face Big Disparities in Access to Autism Care Services
Autism services are harder to find in many of the places where Black, Hispanic and Native American families live, new research shows.
It's known that there are racial disparities in U.S. families' receipt of autism services — ranging from diagnosis and behavioral therapy to school and community programs.
The new study highlights one reason: Those services are simply more scarce in the communities where Black, Hispanic and Native American families live. It also points to specific geographic regions in the United States where disparities are most stark.
That could help in targeting resources to the areas in greatest need, according to the researchers.
"It's a simple study that essentially creates a map," said senior researcher Dennis Wall, a professor of pediatrics at Stanford University. "But it's a good start."
Autism is a developmental brain disorder that, to varying degrees, impairs communication and social skills. In the United States, about 1 in 44 children has the disorder, according to the U.S. Centers for Disease Control and Prevention.
There are various approaches to helping kids with autism, including therapies that focus on certain behaviors or speech and language skills, as well as special education offered at schools.
The earlier a young child is diagnosed and the sooner families can get those services, the better, Wall said.
However, studies have found that compared with their white counterparts, minority children with autism are less likely to receive such services.
Exactly how geography — or where people live — fits in has been unclear.
So, for their study, Wall and his team pulled together data on autism services nationwide and looked at the prevalence of those resources within smaller geographic areas — each containing one or more counties centered around a population "nucleus."
That covered more than 530,000 children aged 5 to 18 with a confirmed autism diagnosis, based on government statistics.
Nationally, the study found, Native American, Black and Hispanic children with autism had access to fewer services per child, versus white kids. Asian children, meanwhile, had the greatest access.
There were some differences, Wall said, based on where kids lived. In larger, metropolitan areas, for example, only Hispanic children had access to fewer services in comparison to white children; in smaller, "micropolitan" areas, both Hispanic children and Black children were underserved.
The researchers were also able to assemble a map showing where in the U.S. autism services tend to cluster, and where they are scarce. In general, scarcity often went hand-in-hand with the area's racial and ethnic makeup.
For example, in the Rio Grande City-Roma area of Texas, nearly all children with autism were Hispanic. And the number of autism services per child in that area was 10 times less than what was typical nationwide.
The study gets at one reason driving racial and ethnic disparities in receipt of autism services, according to Sandy Magaña, a professor of autism and neurodevelopmental disabilities at the University of Texas at Austin.
Geography is only one factor, though. This study looked at access — and not whether families did or did not receive autism services.
That may further depend on whether they have health insurance, or financial resources in general, both Magaña and Wall said. For Hispanic families, Magaña noted, language barriers, knowledge about the services available (particularly for immigrant families) and discrimination could all play a role, too.
Vijay Vasudevan is director of data science and evaluation research at the nonprofit Autism Speaks. He said that one part of the solution could be "telehealth" services.
"Since the start of the pandemic, telehealth services have become more prevalent and available to families, offering those who may reside in a 'resource desert' — such as a rural or minority community — greater opportunity to access services," Vasudevan said.
Autism Speaks has developed some "virtual tools," he said, including a screening questionnaire for signs of autism in toddlers, and a skills training program for parents and other caregivers.
Wall agreed that telehealth services "could help a lot."
Magaña pointed to additional solutions, like giving autism service providers incentives to "set up shop" in underserved parts of the country, and making sure that Medicaid programs in every state cover autism services.
"Empowering families from minoritized populations to advocate for their children at the community and policy levels is another important approach," Magaña said. "Policymakers are more likely to listen if there are people pushing them to pay attention."
The findings were published online Jan. 23 in JAMA Network Open.
The U.S. Centers for Disease Control and Prevention has more on accessing autism services.
SOURCES: Dennis Wall, PhD, professor, pediatrics, biomedical data science, psychiatry and behavioral sciences, Stanford University, Stanford, Calif.; Sandy Magaña, PhD, MSW, professor, autism and neurodevelopmental disabilities, Steve Hicks School of Social Work, University of Texas at Austin; Vijay Vasudevan, PhD, director, data science and evaluation research, Autism Speaks, Princeton, N.J.; JAMA Network Open, Jan. 23, 2023, online