It’s of little secret that when it comes to research, treatment, support, and understanding that much of it has been focused upon children with autism. In an era where experts are able to diagnose autism in children of younger and younger ages, this has opened up a large arena in which experts and researchers can focus on designing treatments for young children with autism to help them make the transition to adolescence and young adulthood more smoothly.
This focus on children, however, has left open a number of concerns for young adults with autism in terms of better understanding regarding their transition planning, living arrangements, social participation, employment, postsecondary education, health and mental health, safety, and other domains.
This might be changing as a recent study out of Drexel University’s A.J. Drexel Institute entitled “National Autism Indicators Report: Transition into Young Adulthood” is a comprehensive report that presents new findings about a wide range of experiences and outcomes of youth on the autism spectrum between high school and their early 20s, including new safety and risk indicators for young adults with autism. The report describes the indicators now available and serves as a call to action to fill the remaining large gaps in knowledge.
According to Paul Shattuck who helped on the report, “When it comes to understanding how well our nation is helping youth affected by autism, our situation is like driving a car through the fog with no dashboard. We know we’re moving, but we do not have many indicators to tell us how fast we are going, whether we’re getting close to our goals, or what kind of mileage we are getting from the resources fueling our trip.”
The key findings of the report include that over one third (37 percent) of young adults with autism were disconnected during their early 20s, meaning they never got a job or continued education after high school. In comparison, less than eight percent of young adults with other types of disabilities were disconnected.
In addition, the report sheds crucial light on what is referred to as “the services cliff” which concerns the dramatic decline in access to services during the transition to adulthood, affects many young adults with autism, including those who are disconnected. Approximately 26 percent of young adults on the autism spectrum, and 28 percent of those unemployed and not in school, received no services—services which could help them become employed, continue their education or live more independently.
In addition, the report also zeroed in on employment and education, finding that 58 percent of young adults on the autism spectrum worked for pay outside the home between high school and their early 20s—a rate far lower than young adults with other types of disabilities. Those who got jobs generally worked part-time for low wages. In terms of education, only 36 percent of young adults on the autism spectrum attended postsecondary education, including 2-year and 4-year colleges, at some time between high school and their early 20s.
While these findings are somewhat disheartening, the report does indicate a significant silver lining in terms of bringing the public’s attention to this section of the autism population and its need for better transition services. While only 58% of the youth surveyed had a transition plan worked out for entering adulthood, researchers, advocates, and policy makers are now better understanding the need for federal services to help adolescents with autism make the transition into adulthood.
As Shattuck himself succinctly put it, “While the picture looks bleak, we found that some of those who have the most significant levels of challenges do go on to find jobs and attend further education. A critical next step is to figure out what facilitates connections to outcomes and what helps people to continue to succeed across their early adult years.” The A.J. Drexel Autism Institute is one such organization that will be making this next step a priority in the coming years.