Autism patients lose access to key services after high school

After young adults with autism spectrum disorder leave high school, the number who receive speech therapy and other services they had in school declines significantly, a new study shows.

Just 9% receive speech therapy, 24% get medical services, 35% access mental health services and 42% have case management services, according to an article in the February Archives of Pediatrics & Adolescent Medicine (link).

Overall, 40% of those age 19 to 23 do not receive any of those services.

Researchers analyzed data about 410 young adults nationwide whose families were surveyed between April 2007 and February 2008. The information is part of a larger 10-year prospective study that independent, nonprofit research group SRI International is conducting for the Dept. of Education.

"It was not a surprise that families were losing services ... but we were surprised at the dramatic drop off in speech therapy," said Paul T. Shattuck, PhD, a study author and an assistant professor of social work at Washington University's George Warren Brown School of Social Work in St. Louis.

The magnitude of the gap between ethnic groups and income levels also was unexpected.

Even after study authors adjusted other factors, the likelihood of blacks not receiving any service were 3.3 times higher compared with white young adults. Patients with incomes of $25,000 or lower were nearly six times less likely to receive any services than those with incomes greater than $75,000.

Shattuck said the study quantifies what is happening on a national level and gives stakeholders data to help make changes as the number of young adults with autism continues to increase. National, state and local policymakers have been working to meet the needs of the growing numbers of children with autism, but that same effort isn't taking place to ensure that these children have the support and services they need as they become adults, the study's authors wrote.

"The National Institutes of Health Strategic Plan for Autism Research has flagged research on services and adulthood as deserving increased attention. This study represents an important step in the process of building a foundation of evidence that can help improve services and foster independence and health among youths with autism spectrum disorder," the study said.

Researchers said young adults with autism are especially vulnerable during the transition to adulthood because of challenges they have with communication and social interaction, a greater reliance on others for aid and high rates of comorbid health and mental health problems.

Dr. Shattuck said physicians and other clinicians can help families by asking if they have thought about what they will do when their child leaves high school. "Getting gentle reminders from clinicians can get [families] thinking about the transition. If you know what is coming, you can be better prepared."