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'So rudderless': A couple's quest for autism treatment for their son hits repeated obstacles

Michelle Andrews, Kaiser Health News on

Published in Parenting News

When Sebastian Rios was a toddler, he hardly talked. “Don’t worry,” his pediatrician told Amparo and Victor Rios, Sebastian’s parents. Kids who grow up in households in which both Spanish and English are spoken are sometimes slower to develop language skills, she said.

Plus, Sebastian was developing well in other ways: When he was just 18 months old, for example, he could identify the magnetized letters of the alphabet on the refrigerator at their home in Bronxville, a short train ride north of New York City.

But by the time Sebastian was a little over 2 years old, his skills weren’t keeping up with those of other kids his age: He spoke only simple words, like “mama” and “dada,” and had problems interacting with people, Amparo Rios said. He didn’t know how to play with other kids and didn’t care about showing people his toys or sharing them. He made eye contact less and less.

The Rioses worried their son might have autism but didn’t know how to get a definitive diagnosis for his lagging skills or how to get him help.

One in 44 children have been diagnosed with autism spectrum disorder by age 8, according to federal estimates. It is a developmental disability that affects people’s social and communication skills and their behavior to varying degrees. About a third of children with autism have intellectual disabilities as well, according to the federal Centers for Disease Control and Prevention.

As awareness of the autism spectrum has grown, new diagnostic criteria that cover milder forms of the disability have helped draw attention to the needs of children, like Sebastian, who may benefit from ongoing treatment and need significant support to go to school and participate in activities like sports.


Autism can’t be diagnosed with a blood test or scan. Instead, professionals generally rely on in-depth interviews with parents or caregivers about a child’s development, as well as evaluations of a child’s behavior during one-on-one sessions. Those may require out-of-pocket payments as insurance companies impose stricter coverage standards. Parents can wait months for appointments with a developmental pediatrician or other specialists.

“There are significant provider shortages, especially with the number of children who are diagnosed or suspected to have autism these days,” said Kelly Headrick, senior director of state government affairs and grassroots advocacy at Autism Speaks, a research and advocacy organization.

As a result, the Rioses discovered, getting a diagnosis and any subsequent help can be a long, winding, nerve-wracking, and sometimes costly road.

Although parents may notice developmental problems during a child’s first 18 to 24 months, children aren’t diagnosed with autism, on average, until they are more than 4 years old, studies show. That means missed opportunities for intervention: Research shows that early treatment of autism leads to better outcomes.


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