People With ASD May Struggle During Transition Into Adulthood

For all of the attention that the rising prevalence of autism spectrum disorder (ASD) in children has received in recent years, there has been little focus on what happens when children with autism transition into adulthood.

While trying to uncover genes and other risk factors tied to ASD or developing ways to diagnose the disorder as early as possible are laudable goals, Anne Roux, M.P.H., a research scientist at the A.J. Drexel Autism Institute at Drexel University in Philadelphia, says this focus is leaving a large population underserved.

“Autism is a lifelong condition; it does not go away as these children age,” Roux told Psychiatric News. “And there continue to be some misconceptions, even among professionals, about autism continuing on to adulthood.”

Roux believes such misconceptions may contribute to the dearth of knowledge or guidance available to help teens with ASD gain the skills or resources they will need as adults.

Secondary schools do provide many needed services such as counseling, speech therapy, and other developmental programs. There are also federal requirements that adolescents with autism have a transition plan—a vision for the future (for example, enroll in college) and how family, school, and other services help the adolescent accomplish his or her goal—in place by the age of 16.

However, a recent study by Roux and her colleagues suggests that less than 60 percent of adolescents with ASD receive assistance with transition planning from the schools.

These and other findings appear in “National Autism Indicators Report: Transition Into Young Adulthood,” a comprehensive guide that draws on data from the National Longitudinal Transition Study-2 (NLTS2). The report provides a snapshot of how people with ASD live, work, go to school, socialize, and make use of health services.

“We wanted to develop something for the decision makers, people who run autism service offices or work in legislative advocacy,” said Roux. “This report provides them with important information without having to access and pay for a whole range of journal articles.”

The information they collected does not paint a rosy picture. The study found that after high school, only 36 percent of people with ASD went on to receive postsecondary education, 58 percent were employed (although a majority worked part-time and/or earned low wages), and only 19 percent lived independently. In comparison, around 75 percent of high school graduates in the general population enroll in some postsecondary education and half of young adults aged 18 to 24 live away from home.

“Once high school ends, people with autism really start to flounder,” said Roux, “even more so than young adults with other intellectual or learning disabilities.”

Nicole Matthews, Ph.D., a researcher at the Southwest Autism Research and Resource Center in Phoenix, can attest to the difficulties facing ASD patients as they age. For several years she and colleagues have been assessing adaptive functioning in children and young adults with ASD.

“Adaptive functioning involves the ability to apply one’s social, communication, and motor skills to situations in day-to-day life, whether it’s being able to dress yourself or knowing how to talk to a supervisor at work,” she explained.

And while many clinicians will take adaptive functioning into account when working with patients with ASD, it is not a defining characteristic of this disorder. (While social and cognitive ability is classified during a diagnosis, how these skills are applied in day-to-day life are not.)

Studies by Matthews and her colleagues have found that adaptive functioning lags as people with ASD get older. Their most recent analysis, which was published in March in the Journal of Autism and Developmental Disorders, looked at 75 ASD patients aged 16 to 58 and found that while patients showed steady cognitive improvements as they grew older, similar gains were not made in adaptive behavior scores.

“These people are not developing their functional skills at the same rate that their brains are developing,” Matthews said, noting that these results continue a trend she found when comparing children with adolescents in a previous study. Specifically, the social and communication skills seemed to stagnate after adolescence, while daily living skills (dressing, cooking, etc.) did continue to grow modestly.

Matthews also found that ASD patients with higher IQs did not fare much better in their adaptive functioning compared with others, suggesting adaptive deficits are not tied to cognition.

“After 18, when autism services stop, we see that so many people with this condition are not in school or work, so they’re not in an environment where they can develop their adaptive behaviors,” Matthews said.

If there’s a take-home message, both Roux and Matthews would agree that parents, teachers, and others should encourage a person with ASD to do as much as possible for themselves at an early age.

“Many parents put a focus on academic skills, but self-sufficiency is a key trait that is holding many people with autism back,” Roux said.

“It’s not all bleak, however,” she continued. “Our report found a subset of patients who have great struggles with their communication skills, but they still can connect with people and attend school or work.”

To help others find their way, though, Roux underscored a need for better national data collection of adults with ASD. The NLTS2 used to develop the Indicators Report is currently one of the only large studies tracking the progress of people with ASD over time. ■