Why Are Latino Children Much Less Likely To Be Diagnosed With Autism?
One in 68 children in the country has been diagnosed with autism. The younger they’re diagnosed, the better chance they have to get early, effective treatment. However, not all children are getting that chance.
According to the Centers for Disease Control and Prevention, in Arizona, white children are 1.5 times more likely to be diagnosed with autism spectrum disorder than Hispanic children. Black children are 1.7 times more likely.
“I think it’s largely access to services,” according to Dr. Daniel Kessler, medical director of the Children’s Developmental Center at Southwest Human Development in Phoenix. “Who has health insurance, who has health insurance even within the AHCCCS system.”
There’s no scientific reason Latino or Hispanic children would be less likely to have autism, he said.
“We don’t know the cause of autism,” he said. “There’s nothing that we’re aware of in the environment, in terms of genetic vulnerabilities, that would necessarily distinguish Latino families. Those families, you would expect to be identified at the same rate as other families, and they’re not."
Kessler is a developmental behavioral pediatrician and his clinic diagnoses and treats children with autism from all walks of life, including those enrolled in the Arizona Health Care Cost Containment System (AHCCCS).
“Families who have the resources, who are identified early, often access those systems earlier, are aware of those systems earlier, so their children are entering the path from a much earlier age,” he said.
What about families who don’t have private insurance and depend up on the public health system?
“They’re going to start later, they’re going to have less access to those programs and find themselves trying to put those kinds of programs into place for their kids at a later age,” said Kessler.
And that’s a problem, he said, because early intervention is key in helping treat children with autism.
“As soon as they are not speaking well, as soon as they have different stemming, you notice something is going on and to see that they can’t get the help that they need is actually very devastating,” said Gabriela Orozco, president of Grupo de Apoyo para Ninos Especiales (GANE), a Spanish-speaking parents’ support group for children with special needs. “It’s very crucial that they find a way so that these kids can get the help they need.”
GANE has been around for about 15 years. Orozco said they have about 40 or 50 families who come to their meetings, and 250 families in their database. They meet once a month at Ideal Care, LLC, in west Phoenix, where Orozco and her husband work training health care providers how to work with people with disabilities.
She has a 22-year-old son with autism, and she knows that the community matters.
“At times you feel like you’re the only one going through that,” she said.
Through GANE, they find the support they need. She said, over the years, she’s seen the group — and the number of Latino families around the Valley with special needs children — grow.
“We are very much affected by it, we see it with our families, every single month we have new families that join our group and we notice that the majority of our families are families with kids with autism,” she said.
But, getting a diagnosis that will allow you to access state services and treatment isn’t as easy as it sounds, especially for some Latino families, said Kessler.
“You can’t just get into the program, you need an official diagnostic process to meet criteria for the various program supports,” he said, “As anything else, language is sometimes a barrier, culture is sometimes a barrier, how a family views behavior or differences.”
“A lot of families here come here and they’re struggling,” Orozco said. “They come here and we try to help them as much as we can, because they hit a brick wall.”
Orozco said language is the first — and biggest — wall that Latino families hit when trying to access care.
If they need to apply for AHCCCS, “they just won’t even do it because they think, ‘somebody has to go with me, if I don’t get somebody to go with me, somebody there won’t speak Spanish,’ so that’s one of the biggest hurdles,” Orozco said.
The CDC reported recently that 43 percent of children identified with autism spectrum disorder had their first evaluations by age 3. Their Healthy People 2020 goal would increase the proportion to 47 percent.
Orozco said many Latino families don’t have health insurance, and then, there’s not much they can do.
“They wait around to see if the school will help them out, at times, the school won’t do it, as well. So they struggle,” she said.
By the time they find GANE, Orozco said families need help navigating the complicated health care system, special education programs in public schools, and the cultural barriers surrounding disability that they face.
GANE member Migdalia Morales said her son was diagnosed with autism when he was 4 years old. Before that, she went to the doctor several times, concerned about his development.
“The doctor would always tell me that he’s just slow and all the boys were slow," Morales said.
She said she didn’t know what autism was at the time, but she knew that her son’s behavior wasn’t normal.
“He was doing things that other kids didn’t do,” Morales said.
She took him to a psychologist and got an official diagnosis. She said it then took her another two years to get him into treatment.
“The thing with the kids with autism, it’s the time, it’s like gold,” she said. “The sooner the better, but it took me a while so we lost a lot of time.”
Now, her son is 14 and a very loving kid, she said. But, she still regrets not getting him into treatment sooner and she urges parents who are new to the group not to wait.