AYESHA RASCOE, HOST:
U.S. Health Secretary Robert F. Kennedy Jr. has called autism an epidemic and is promising to find and root out its causes. But he's not doing the things researchers say families with autistic children most need from the federal government. That is increasing access to early diagnoses and early interventions. From member station KUOW in Seattle, reporter Eilis O'Neill has more.
EILIS O'NEILL, BYLINE: Natasha Nelson (ph) says when her daughter was a baby, she noticed early that something was different.
NATASHA NELSON: She was not speaking. She was not shaking her head yes or no. She wasn't waving goodbye.
O'NEILL: Nelson got a referral to one of Georgia's early intervention centers. Every state has these, funded and regulated by the federal government. They give free evaluations to babies and toddlers who aren't meeting developmental milestones. And then, if the child qualifies, the centers offer services like speech or occupational therapy. But there were some things the center didn't provide for Nelson's child.
NELSON: So for example, intensive toileting therapy, food therapy because she really struggled with eating 'cause of texture issues.
O'NEILL: Nelson tried to get her health insurance to cover those treatments, but they said, first, they'd need a diagnosis.
NELSON: Well, let me send these evaluations that I got from the early intervention program. They said, no, no, no, you have to have a medical diagnosis.
O'NEILL: Early intervention programs generally do not give medical diagnoses. Nelson had to pay $5,000 for a private psychologist to do that. Health Secretary Robert F. Kennedy has focused on trying to prevent and cure autism, for example, by telling pregnant women not to take Tylenol, suggesting without evidence that it causes the condition, or by encouraging the use of a drug called leucovorin to treat it, even though it's not clear that would help most autistic kids. But researchers who've been studying autism for decades say the condition has always existed, and the complex causes are most likely genetic. What they say families need is access to diagnoses and interventions, especially if they can't afford thousands of dollars out of pocket.
ANNETTE ESTES: It is a frustrating time because we really do know how to identify autism just as soon as it emerges.
O'NEILL: Annette Estes is a psychologist and director of the University of Washington's Autism Center in Seattle.
ESTES: We have a lot of really good approaches for supporting development and helping kids meet their full potential.
O'NEILL: Autism experts and advocates say the federal government could improve access to diagnoses by telling early intervention centers to provide them, by requiring private insurance companies to cover them, and by increasing how much Medicaid will pay for a child to be evaluated, which would make it more likely their caregivers could find a psychologist or other specialist who would do the work.
NPR reached out to the U.S. Department of Health and Human Services for comment. They didn't address the concerns raised by families and experts in this story but said that Kennedy is focused on research, diagnosis, treatment and prevention. Estes says once kids have a diagnosis, they may need therapies to help them communicate, eat and cope with new situations. If they get those...
ESTES: Kids just start taking off developmentally. Really, what it translates to for the child is being able to be in regular classrooms, learning along with their peers.
O'NEILL: But many kids don't get those interventions early enough, according to autism experts - little kids because they're not being identified and diagnosed, and older kids because public schools are underfunded and don't have enough special ed resources to go around. Connie Kasari is a psychologist and founder of UCLA Center for Autism Research and Treatment.
CONNIE KASARI: One of the things I often think about is, how do we help children with disabilities go into the workforce or go to college or whatever? So we need that development in the public schools.
O'NEILL: Kasari says schools need more support. But instead, she says, the current administration is taking resources away from special education.
KASARI: The federal government now is curtailing some of that training of special ed teachers.
O'NEILL: For example, this past fall, the administration canceled 25 grants that were supposed to help train special ed teachers in 14 states. At the time, the administration said the funds were being reinvested into programs that better serve special needs students.
Kasari's especially concerned about the Trump administration's ongoing efforts to dismantle the Department of Education. The administration says their goal is to return control over education to the states. But Kasari says the agency is important for autistic kids because it ensures that states follow federal law and provide services to kids with disabilities.
KASARI: The Department of Education has a number of people who work just to make sure that kids are getting what they need so parents can file due process when they're being denied.
O'NEILL: Kasari says that's why she's worried that if the agency were shuttered, kids could lose access, even to the services they have today. So far, the courts have blocked the Trump administration from closing the department entirely. NPR reached out to the agency for comment but did not get a reply.
For NPR News, I'm Eilis O'Neill. Transcript provided by NPR, Copyright NPR.
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