Families of kids with autism navigate a maze of barriers to find support : Shots - Health News Dr. Mai Pham left a corporate career to spark change in a system that is failing millions of Americans with autism and other intellectual and developmental disabilities.

Kids with autism struggle to adapt to adulthood. One doctor is trying to change that

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SCOTT SIMON, HOST:

Autism and other intellectual or developmental disabilities affect as many as 1 in 20 Americans, but they often find it hard to find and afford the right services. Noam Levey from our partner Kaiser Health News reports on one family that's trying to spark change.

NOAM LEVEY, BYLINE: Alexander Roodman was packing up his room preparing for a gap year before college when I met him at his family's Washington, D.C., townhouse. The room was a typical teenage disaster zone, with clothes and books strewn everywhere. From the middle of the mess, Alex picked up an origami sculpture.

ALEXANDER ROODMAN: It's kind of a repetitive pattern. First, you make the diagonal folds and these lateral folds to cut up the paper in half every possible way.

LEVEY: The piece had dozens of ridges and depressions. It's pretty complicated. Alex, though, is gifted with the focus for this. But the way his brain works can be a challenge. Alex is autistic, and his mother and father, like many parents of autistic children, have spent years trying to find a doctor or school or therapist who could help.

MAI PHAM: It's a little bit like hot potato. Oh, is the school supposed to counsel me? Is the pediatrician supposed to counsel me? Am I supposed to figure that out?

LEVEY: Dr. Mai Pham is Alex's mother.

PHAM: I think he always believed we were on his side, but he could also see that we were sometimes helpless.

LEVEY: In preschool, Alex didn't connect with other kids. In high school, his autism fueled crippling anxiety. Alex had trouble sleeping and began picking at his hands until they bled. There were frequent breakdowns.

PHAM: He might slam the wall with things or break - he broke the tip off of a knife. He always felt contrite afterwards. He just didn't have any other avenue for, you know, adequately expressing how frustrated he was.

LEVEY: Pham thought she'd be better prepared than most parents. She's an internist and former senior Medicare and Medicaid official with degrees from Harvard and Johns Hopkins. Yet as Alex struggled, Pham says their family felt lost. The pediatricians, psychiatrists and therapists they saw often minimized Alex's symptoms or shuffled him to someone else. That's a common experience, says Monica Adler Werner. She's a counselor who works with Alex and other autistic patients.

MONICA ADLER WERNER: The odyssey that parents have to go on in order to find what their children need is really a shame of our society.

LEVEY: Long waitlists for therapy are the norm nationwide. So are medical bills that can reach tens of thousands of dollars.

PHAM: We were lucky we could afford those services. We have health insurance. I had the kind of jobs where I could hop in a car once or twice a week and drive 50 minutes each way to get him to therapy.

LEVEY: Millions of Americans face even bigger barriers to care. Families in rural areas often travel hours for services. Many Black and Latino families face persistent inequities in the U.S. health system. Nationally, parents of children with autism are 10 times more likely to say they're frustrated in their efforts to get services. Pediatrician Kristin Sohl says primary care physicians, who are a more convenient option for many families, could fill some of those gaps with better training. Sohl teaches these skills at the University of Missouri.

KRISTIN SOHL: We got to make this accessible so that people can have access to what they need, when and where they need it.

LEVEY: But many physicians remain unprepared. In one survey, just 40% said they were very confident their care for patients with disabilities was as good as their care for others. Changing that has now become Mai Pham's life's work. She quit her job at a major health insurer in 2020 to start Institute for Exceptional Care. The nonprofit aims to improve the way doctors are trained and overhaul how they are paid to ease billing pressures. That way, they can spend more time with patients instead of rushing through visits.

PHAM: We've made huge investments in the science and, to some degree, the clinical aspects of care, but we haven't thought about how to make any of that sustainable.

LEVEY: Pham said that's particularly important because so many patients are aging and developing medical conditions such as diabetes, heart disease or dementia.

PHAM: How you communicate to someone like my son or how you manage chronic conditions for him will need to be different. The health system hasn't thought about that either.

LEVEY: For his part, Alex is in Vermont at a special program where he's rock climbing, hiking and developing life skills alongside others with intellectual and developmental disabilities. Pham and her husband have been cheered by his progress. They still worry, though, about what's ahead for Alex in a health system that's unprepared for him.

SIMON: And that was Noam Levey with our partner Kaiser Health News.

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