Researchers and service providers must explore innovative solutions if we are to improve outcomes for adults with autism. This is the central message of today’s keynote address at Autism Speaks 2012 conference for families and professionals – Treating the Whole Person with Autism: Providing Comprehensive Care for Children and Adolescents with ASD.
Recent reports indicate unemployment and underemployment together hover around 90 percent for adults with autism. In addition, most continue to live with parents or other caretakers. The guiding goal, Dr. Gerhardt says, should be to help all adults on the spectrum to live more fulfilling and, to the extent possible, more independent lives.
Yet relatively few programs exist to help adults with autism tackle such essential life skills as personal safety, community integration, transportation, health and wellness, sexuality and aging, Dr. Gerhardt notes. Our research community must prioritize these issues, he argues.
“We need to build not just lives but communities around people,” Dr. Gerhardt says. “There’s been a lot of work looking at service research, like what services adults with autism get, where they’re living or how many are employed. That’s good to know, but we really need future planning research and information on how to best provide support to those individuals.”
So what can we do to best shape future research that improves adult outcomes? The work begins with identifying the knowledge and skills vital for independence and fulfillment, Dr. Gerhardt says. Knowing how to cross a road safely, for example, is far more crucial than being able to recite the 50 states. Yet conventional education tends to emphasize the latter type of knowledge and take for granted understanding of the former.
There is a relatively small handful of skills essential to successful community integration, Dr. Gerhardt notes. They include such skills as polite eating, good hygiene, appropriate sexual behavior and aggression avoidance. He urges a dramatic increase in research on how to best impart these skills and to combine them with adaptive behavior strategies.
Adaptive behavior skills rank high among those needed for success in the teen years and adulthood, Dr. Gerhardt explains. Such skills enable individuals to respond to the unexpected and adjust to changing circumstances. Our world does not always play by the rules, he points out.
After identifying the target skills needed to improve adult outcomes, research can then assess the best methods for imparting these skills. Retrospective studies comparing “successful” to “unsuccessful” adults on the autism spectrum can help shed light on the best strategies.
Optimizing adult outcomes must become a much higher research priority, Dr. Gerhardt concludes. Though the vast majority of a person’s life is spent as an adult, studies involving adults represented fewer than 20 of more than 1,400 scientific papers published about autism in 2011.
Yet Gerhardt sees hopeful signs of change.
“In the past five years we’ve finally begun worrying about the tsunami of kids that will be entering the adult system, and eyes are now starting to turn towards issues in adulthood,” he says. More and more researchers are tackling issues such as adaptive behavior strategies and life skills. We need the guidance of their study findings, he concludes. Only then can we achieve a society that includes adults with autism as a vital part of its fabric.
For more information on the challenges faced by adults with autism, see these related news stories and blog posts: Sobering Picture of Young Adults with Autism, Adults with Autism: Sharing Ideas, Filling the Gaps. For more resources on transition and adult services, see Autism Speaks Transition Tool Kit and Autism in the Workplace.
Autism Speaks is currently funding a number of studies that seek to identify and more effectively address the transition needs of adolescents and adults with ASD. Autism Speaks is also proud to be a member of the Advancing Futures for Adults with Autism consortium.