Researchers found that compared to kids without autism, those with the disorder had higher costs for doctor visits and prescriptions -- an extra $3,000 a year, on average.
But the biggest expenses were outside the medical realm. "Non-health care" services averaged $14,000 per child, and special education at school accounted for more than 60 percent of those costs.
Past studies into the costs of autism have mainly focused on health care, said Tara Lavelle, a researcher at RAND Corp. in Arlington, Va., who led the new study published online Feb. 10 and in the March print issue of Pediatrics.
These findings, she said, give a more comprehensive view. Her team estimates that services for children with autism cost the United States $11.5 billion in 2011 alone.
"The societal cost is enormous," said Michael Rosanoff, associate director of public health research and scientific review for Autism Speaks, a New York City-based advocacy group.
And the dollar estimates from this study cover only children with autism -- not adults, noted Rosanoff, who was not involved in the research.
He said the findings do give a clearer idea of the costs to school systems, in particular. Now more work is needed to "dig deeper" into the issue, Rosanoff said. Some big questions, he noted, are whether school districts have the resources to handle the needs of all students with autism, and whether individual children are being well served.
In the United States, about one in every 88 children has an autism spectrum disorder, according to the U.S. Centers for Disease Control and Prevention. The developmental disorders vary widely in severity. Some kids have "classic" autism, speaking very little, and showing repetitive, unusual behaviors like hand flapping; they may also be intellectually impaired. Other kids have average or above-average intelligence, but have difficulty with social interaction.
For the new study, Lavelle's team pulled data from two national surveys. They found information on 246 families with children affected by autism spectrum disorders, ranging from mild to severe, and close to 19,000 families with unaffected children.
In one survey, parents were asked about non-medical services for their kids -- from special education at school, to autism therapy sessions, to help with child care. Those costs turned out to be much bigger than medical care, with special ed being the single largest expense -- at $8,600 per year, on average.
There was one surprise in the findings, according to Lavelle: Parents of kids with autism spectrum disorders reported no greater out-of-pocket expenses than other parents, on average.
"That's inconsistent with previous research, which has found higher out-of-pocket costs," Lavelle said. She noted that this study had a fairly small sample of families affected by autism, and that might have prevented the researchers from finding substantial differences in parents' expenses.
Rosanoff agreed that the finding is surprising. But he said it's possible that this latest study reflects progress in getting insurers to pay for autism therapies.
As it stands, 34 U.S. states have now passed "autism insurance reform laws," according to Autism Speaks. Several others are considering such legislation.
"This study could suggest that autism insurance reform is working," Rosanoff said.
Lavelle said more studies are needed to see how families are coping financially. As for schools, she said very little is known about whether districts have the resources they need to serve all their students with autism.
Rosanoff said one potential way to lessen the burden on schools would be to improve early diagnosis and treatment of autism.
Diagnosing an autism spectrum disorder can be difficult, since there's no simple test for it. According to the CDC, autism can sometimes be diagnosed by the age of 18 months, but many children do not receive a final diagnosis until they are much older.
The agency says that all children should be screened for developmental delays during routine check-ups, starting at the age of 9 months. Such screening could help in detecting an autism spectrum disorder sooner.
If children can be diagnosed early, Rosanoff said, they can begin therapy well ahead of school age. That might ease their reliance on special education once they do enter school, he said.
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