By ALEX SMITH
Heartland Health Monitor

KANSAS CITY, Kan. — Just after picking her son Raoul up from day care, Wendy Santillan serves him milk and cookies. Raoul, a 3-year-old with a crew cut and big brown eyes, happily devours his snack. But Wendy says she noticed early on some unusual behavior in her son.
“When he was 18 months, he starts to play with the toys in a different way,” she said. “He used to pass the toy (along) the corner of his eye, and that wasn’t normal at all to me.”

As Raoul grew older, he showed limited use of language. He wouldn’t point to objects. He became increasingly isolated. And in what doctors call self-stimulatory behavior, he still rubbed toys across his face.

In February, Raoul was diagnosed with autism spectrum disorder – among the one of every 68 children in the United States with the syndrome, according to the Centers for Disease Control and Prevention.

“I was very worried because you, as a parent, never want your kid to be different,” Santillan said.

Wendy came to the United States from Mexico about eight years ago. She now works as a babysitter and lives in a mobile home in Kansas City, Kan. She says that when Raoul was diagnosed, she tried to do all she could to help him but had trouble knowing where to begin.

“I speak English, but it’s not my first language,” she said, “and it’s hard for me to understand, especially clinical words. And I was trying to find some information in Spanish, and you cannot find it.”

Misdiagnosing the disorder

For many Hispanic parents, getting help for their autistic children is a challenge. And that often starts with the failure to identify the disorder in the first place, said Jason Travers, an assistant professor in the special education department at the University of Kansas.

In an article in the Journal of Special Education, Travers demonstrates that Hispanic and black children are diagnosed with autism at lower rates than white children. That, he says, doesn’t make sense.

“We shouldn’t have this disparity because autism is a disability that, according to most of our evidence, affects people regardless of race or ethnicity and socioeconomic status,” Travers said.
Travers, then a faculty member at the University of Massachusetts-Amherst, and his fellow researchers examined the number of students across the country diagnosed with autism from 2000 to 2007 – whether the diagnosis was made by a doctor or by the schools themselves.

This was a time when autism diagnoses were soaring – for white students. But in just about every state for which data were available, that wasn’t the case for Latino or black students. Travers believes those children were misdiagnosed.

“The child might instead be identified as having an emotional or behavioral disorder or a learning disability or an intellectual disability,” he said. “The child might be identified as having a health impairment.”

Travers said these kids often receive a vague diagnosis of “adjustment disorder.”

Diminishing prospects

Under the Individuals with Disabilities Education Act, schools are required to provide special services for children with autism. But when students are not identified as being autistic, they miss out on crucial early help. And without that help, their long-term prospects diminish.

“They’re less likely to be gainfully employed and contribute to the tax base,” Travers said. “They’re more likely to live with their parents and be reliant on social services. They’re less likely to have a satisfactory quality of life.”

Travers said the reason for these disparities is unclear. It may be lack of access to doctors. It may be a cultural phenomenon. Some parents may not have the knowledge, confidence or time to advocate for their children. And school themselves may be an issue. Travers said there seem to be significant differences in how schools recognize the disorder.

“Some schools are ready and willing to accept an outside evaluation, a clinical diagnosis, and others will refuse and resist that outside evaluation and instead prefer to conduct their own,” he said.

This is not the first time disparities in identifying autism have been discovered. David Mandell, an associate professor of psychiatry and pediatrics at the University of Pennsylvania, published an article exploring the problem in 2002, and he’s been involved with several influential studies since then. But he said Travers’ work is a big step forward in understanding what’s happening.

“It is truly a measure of the extent to which we are serving our most vulnerable children,” Mandell said. “And it suggests that we are underperforming and that we have a long way to go to improve care.”

A ‘call to arms’

Most of what’s known about autism disparities comes from health data or projections based on sample groups. By looking at individual numbers from individual schools, Travers’ study underscores how Hispanic and black students are missing out on services to which they are legally entitled.

Mandell hopes the new findings will serve as a call to arms.

“For a long time, advocacy around autism has really been led by very well-meaning, very effective, relatively wealthy or privileged individuals. And I think that this suggests an urgent need to engage other families in this battle to obtain appropriate care for children with autism,” he said.

After Raoul finishes his snack, Wendy Santillan’s son grabs his mother’s smart phone. Wendy was lucky; she found help for Raoul through Oasis, a KU training program for parents of autistic children geared toward families living in rural or remote areas.

Raoul is doing well. Defying stereotypical autism behavior, he smiles and seems to enjoy playing with his mother. But Wendy said she gets nervous thinking about his future and what will happen when he starts grade school.

“I don’t know what’s coming next, you know?” she said. “I don’t know if there’s public resources or if I’m going to have to put him in private. I don’t know. I have no idea what’s next. And it’s a worry. Of course it’s a worry, as a parent.”

Wendy still encounters hostility from some Hispanic parents when she suggests their children may have symptoms of autism. So she’s not only doing all she can to educate herself about the disorder, she’s working to educate other families in her community as well.

Alex Smith is a reporter for Heartland Health Monitor, a news collaboration focusing on health issues and their impact in Missouri and Kansas.