Families of kids with autism navigate a maze of barriers to find support : Shots

Dr. Mai Pham is an internist and former senior Medicare and Medicaid official with degrees from Harvard and Johns Hopkins universities, but she still struggled to find care for her son with autism, Alex Roodman.

Alyssa Schukar for KHN

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Alyssa Schukar for KHN

Dr. Mai Pham is an internist and former senior Medicare and Medicaid official with degrees from Harvard and Johns Hopkins universities, but she still struggled to find care for her son with autism, Alex Roodman.

Alyssa Schukar for KHN

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.

Then, Alex picked up an origami sculpture that rippled with dozens of ridges and depressions. “It’s kind of a repetitive pattern,” he said. “First, you make the diagonal folds and these lateral folds to cut the paper in half.”

It’s pretty complicated. Alex, a slim teenager with long black hair and penetrating eyes, is gifted with the focus for this. But the way his brain works can be a challenge.

Alex is autistic.

And like many parents of children with autism, Alex’s mother and father have spent years trying to find a doctor or school or therapist who could help.

“It’s a little bit like hot potato. Is the school supposed to counsel me? Is the pediatrician supposed to counsel me? … Am I supposed to figure that out?” said Dr. Mai Pham, Alex’s mother. “I think he always believed we were on his side. But he could also see that we were sometimes helpless.”

The U.S. has made major strides in recent decades in raising awareness about autism and other intellectual and developmental disabilities, which affect as many as 1 in 20 Americans.

Improvements in screening, new therapies and burgeoning specialty clinics have made available care that was unthinkable a generation ago. But the health care system is still failing millions of Americans from the time they are children, experts and advocates say.

Getting to know Alex

When Alex was born, this world and its frustrations were an abstraction for Pham and her husband, David Roodman, a Harvard University-trained policy analyst.

There were signs that Alex, their second child, was a little different. Pham remembers taking Alex on a trip when he was 3 months old.

“In a hotel room in Miami, we put him on the floor thinking, ‘OK, we have five minutes now before the baby acts up,’ ” Pham said. “He actually spent 20 minutes being nearly still, just his eyes tracking the shadows of a palm frond on the walls.”

In preschool, Alex had difficulty…