Nurse manager Kathryn Smith answers parents' questions all day long: How do I know if my child has autism? What are the signs? Lately she's been getting a lot of calls from parents who have older teens transitioning into adulthood.
"Typically families are looking for services," said Smith, who works at the Boone Fetter Clinic at Children's Hospital Los Angeles.
There aren't very many. Smith works primarily with families who have kids with autism at Children's Hospital L.A.
"A lot of the service focus for individuals with autism is really in the younger ages," said Smith.
At the International Meeting for Autism Research in San Diego, scientists examined what happens to these kids as they age.
Researchers found the older a child with autism gets, they experience fewer behavior problems and they hang on to their functional abilities. But compared to other adults, those with autism were significantly more likely to be in poor health. And they experienced a more rapid decline after age 45.
Smith says finding a doctor who can deal with this combination of health issues is a major challenge.
"The bad news is trying to find providers who feel comfortable taking care of a person with a chronic condition who also has a diagnosis of autism," said Smith.
During the 10-year study of 400 individuals with autism, 11 died, some from heart attacks and others as a result of accidents.
Researchers also found adults on the autism spectrum end up relying on the public service system and family for most of their lives.
Smith says this type of research shows the issue is only going to get bigger as our population ages.
"Given the increasing numbers of individuals with autism, that policymakers really need to take a look at how to serve these people better," said Smith.
The 10th Annual International Meeting for Autism Research officially kicks off Thursday in San Diego. More than 1,900 researchers, clinicians and specialist will gather, all devoted to a better understanding of autism.