Spend time talking with autism researchers or with families of adolescents or adults with autism, and it doesn’t take long for the phrase “falling off a cliff” to come up. The new environments, people and expectations for independence that come with entry into adulthood can be tricky for any young person. For someone with impaired abilities to communicate and manage relationships, solve problems flexibly and regulate emotions, this period can be harrowing. And the end of adolescence means the end of federally mandated special education services — just when the need for support may be greatest.
In a study of 242 teens transitioning to adulthood, Taylor and Marsha Mailick at Wisconsin–Madison found that young people’s autism symptoms and behaviors such as repetitive habits, withdrawal and self-harm often improved during adolescence. But progress typically slowed markedly, or even stopped, after students left high school.
Paul Shattuck directs the Life Course Outcomes program at Drexel University’s Autism Institute in Philadelphia. He has spent much of the last five years dissecting data from a nationally representative survey of adults who received special education services during high school, including students with autism.
Shattuck’s results are bleak. Within just a few years of leaving high school, almost 40 percent of the young adults in his sample were receiving no medical, mental health, case management or speech or language services, he and colleagues reported in JAMA Pediatrics in 2011.
In a separate study published in 2012 in Pediatrics, Shattuck’s team found that more than half of young adults with autism were “completely disengaged” from any employment or post-secondary education in the two years after leaving high school. Young adults with learning disabilities, intellectual disabilities or speech or language impairment were much more likely to have some engagement with work or school after high school.
Poor employment outcomes are especially dismaying because good employment may make a world of difference for autistic adults’ personal development. In a 2014 study, Taylor, Smith and Mailick found that the more independence adults had at work, the more improvement they showed over the next five years in social interactions, communication skills, repetitive behaviors, self-harm, socially offensive behavior and activities such as housekeeping and making meals.
In 2013, a review published in the Journal of Autism and Developmental Disorders of 1,217 studies, conducted from 1950 to 2011, found only 13 that assessed interventions (all psychologically based) for adults with autism. The review, by researchers at the University of Pittsburgh, found that most research followed single cases or involved very few participants. Only four of the studies randomly assigned adults to treatment versus control groups.