After finishing high school, many children with autism spectrum disorders (ASDs) are left hanging without supportive or health services, according to a national survey.
The survey, of families of more than 400 youths enrolled in special education followed in a 10-year prospective study, found that nearly 40 percent of those with ASDs didn't get any speech therapy, case management, mental health services, or other health services after age 18, Paul Shattuck of Washington University in St. Louis and colleagues reported.
"Exiting high school is associated with a steep decline in service receipt," Shattuck and co-authors wrote in the February issue of the Archives of Pediatrics and Adolescent Medicine, noting that the proportions of children receiving these services six years prior to graduation were greater than after they graduated.
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There's been little research as to what happens to adolescents with ASDs once they reach young adulthood. Youths are especially vulnerable during this time, the researchers said, because of their challenges with communication and social interaction, as well as their greater reliance on others for aid and high rates of comorbid health and mental health problems.
So the group conducted a telephone survey between April 2007 and February 2008 among parents and guardians of 410 participants ages 19 to 23 in the National Longitudinal Transition Study 2 -- a 10-year prospective study that followed more than 11,000 young people who had been enrolled in special education. The study included 920 youths enrolled in the special education autism category at the start of data collection in May 2001.
The families were surveyed about the use of mental health services, medical evaluation and assessment, speech therapy, and case management among the young adults.
The mean age of the sample was 21.5 years, with 21.2 percent of adolescents being nonverbal and 34.5 percent having attention deficit/hyperactivity disorder (ADHD). The majority -- 79 percent -- lived with their parents and 91.5 percent had health insurance. Most youths in the sample were white males.
The researchers found that overall, 39.1 percent of youths with an ASD received no services at all.
The rates of use for specific services ranged from 9.1 percent for speech therapy to 41.9 percent for case management. Overall, 23.5 percent used medical services and 35 percent used mental health services.
The researchers said these rates were comparatively lower than those six years earlier when the youths were still in high school -- 63.6 percent had a case manager, 74.6% were getting speech therapy, 46.9 percent had medical services, and 46.2 percent had mental health services.
Certain groups did have a reduced likelihood of receiving services, specifically African Americans with autism, who had more than a threefold likelihood of getting no help after high school.
This suggests a need for targeted prevention and outreach, the researchers said, as well as a need for "further research into access barriers, the development and evaluation of equitable service delivery models, and targeted policies to promote access among underserved populations."
Those with lower incomes were also more likely to receive no services after age 18 and were less likely to receive case management as well.
Those with higher functional skills were less likely to use medical service or receive case management. This may be attributable to the fact that some states provide adult mental disabilities services and those programs require demonstration of functional impairment, the researchers said.
They added that they saw no association between service use and verbal ability or ADHD.
The study was limited because it relies on self-reported data, but the researchers still concluded that it 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 disorders."