HomeHEALTHUS parents face huge disparities in access to autism care services

US parents face huge disparities in access to autism care services

by Amy Norton

healthday reporter

MONDAY, Jan. 30, 2023 (HealthDay News) — Autism services are hard to find in many places where Black, Hispanic and Native American families live, new research shows.

It is known that there are racial disparities in American families’ receipt of autism services—from diagnosis and behavioral therapy to school and community programs.

new studyhighlights one reason: Those services are more scarce in communities where Black, Hispanic and Native American families live. It also points to specific geographic regions in the United States where disparities are greatest.

According to the researchers, targeting resources to the areas most in need could help.

“This is a simple study that essentially builds a map,” said senior researcher Dennis Wall, 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 US Centers for Disease Control and Prevention.

There are many ways to help children with autism, including treatments that focus on certain behaviors or speech and language skills, as well as special education offered in schools.

Wall said the earlier a young child is diagnosed and the sooner families can get those services, the better.

However, studies have found that compared to their white counterparts, minority children with autism are less likely to receive such services.

Exactly how geography – or where people live – is unclear.

So, for their study, Wall and his team collected data on autism services across the country and looked at the spread of those resources within small geographic regions—each centered around a “nucleus” of one or more counties.

Based on government statistics, more than 530,000 children aged 5 to 18 were confirmed with an autism diagnosis.

Nationally, the study found, Native American, black and Hispanic children with autism had access to fewer services per child than white children. Meanwhile, Asian children had the largest reach.

There were some differences based on where the children lived, Wall said. In large, metropolitan areas, for example, only Hispanic children had access to fewer services than white children; In smaller, “metropolitan” areas, both Hispanic children and black children were underserved.

The researchers were also able to assemble a map showing where autism services in the US are clustered, and where they are scarce. In general, scarcity often went hand in hand with the racial and ethnic makeup of the region.

For example, in the Rio Grande City-Roma area of ​​Texas, nearly all children diagnosed with autism were Hispanic. And the number of autism services per child in that area was 10 times less than the nationwide average.

According to Sandy Magana, professor of autism and neurodevelopmental disabilities at the University of Texas at Austin, the study points to one reason driving racial and ethnic disparities in receipt of autism services.

However, geography is only one factor. This study looked at access – and not whether or not families received autism services.

This may further depend on whether they have health insurance, or financial resources in general, both Magna and Wall said. Magna said that for Hispanic families, language barriers, knowledge about available services (especially for immigrant families) and discrimination can all play a role.

Vijay Vasudevan is director of data science and evaluation research at the nonprofit Autism Speaks. Part of the solution could be “telehealth” services, he said.

“Since the start of the pandemic, telehealth services have become more prevalent and available to families, offering those who may live in ‘resource deserts’ — such as rural or minority communities — More opportunity to access services.”

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 “can be of great help.”

Magna pointed to additional solutions, such as giving autism service providers incentives to “set up shop” in under-served parts of the country and ensuring that Medicaid programs in every state cover autism services.

“Another important approach is to empower families with minority populations to advocate for their children at the community and policy levels,” Magna said. “Policy makers are more likely to listen if people are pressing them to pay attention.”

The findings were published online on 23 January JAMA Network Open.

more information

The US Centers for Disease Control and Prevention has more about accessing autism services.

SOURCES: Dennis Wall, PhD, Professor, Pediatrics, Biomedical Data Science, Psychiatry and Behavioral Sciences, Stanford University, Stanford, California; Sandy Magana, PhD, MSW, Professor, Autism and Neurodevelopmental Disabilities, Steve Hicks School of Social Work, The University of Texas at Austin; Vijay Vasudevan, PhD, Director, Data Science and Evaluation Research, Autism Speaks, Princeton, NJ; Jama Network Open, January 23, 2023, online



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