With growing numbers of families across the country affected by autism spectrum disorder—over all one in 88 children will be diagnosed with A.S.D., and one in 54 boys—how well is U.S. society preparing for autism’s coming of age? A study published in the June issue of Pediatrics suggests cause for concern.
The study, funded by the Organization for Autism Research, Autism Speaks and the National Institute of Mental Health, found that young adults with autism spectrum disorder are far less likely to continue their education or find a job after high school compared with young adults with other disabilities. Only about 35 percent of young adults with autism attended college, and only 55 percent were employed during the first six years after high school. That rate compares unfavorably with those of young adults with other disabilities. Eighty-six percent of young people with a speech or language impairment, 94 percent of those with a learning disability and 69 percent with mental retardation were employed during the same time frame.
The report “mainly confirms what a lot of us already knew,” said Jennifer Borek, a faculty member of the University of Notre Dame’s Alliance for Catholic Education and a member of the Autism Task Force for the National Catholic Partnership on Disability. Borek is the parent of a young adult with autism. In the short term, she said, the report may only “add to the anxiety” parents with children on the autism spectrum already feel. For many the future is a chronic worry, particularly when they consider what may happen when the various developmental and skill-building services parents have been able to arrange expire as children reach their teen years.
But ultimately “it’s helpful to have this kind of confirmation,” Borek said. It is information parents can use to raise awareness of the special challenges of young people with autism and the need for more developmental and family support services. Even young people with “mild” autism or Asperger syndrome face significant problems dealing with the everyday world, navigating morning routines and social interactions other people can take for granted.
“Many families with children with autism describe leaving high school as falling off a cliff because of the lack of services for adults,” said the study’s senior author Paul Shattuck, an assistant professor of social work at Washington University in St. Louis. “So much of media attention focuses on children. It’s important for people to realize autism does not disappear in adolescence. The majority of lifespan is spent in adulthood.”
The study suggests that more thought and resources need to be directed to figuring out how to help A.S.D. young people manage the transition to adulthood and whatever level of self-sufficiency they may be capable of establishing. About 50,000 youths with autism will turn 18 this year in the United States.
Borek said that across the country there is a vast disparity in how well Catholic parishes, dioceses and religious orders have responded to the challenge of autism’s growing population. Some have programs in place; some remain far from welcoming to people with autism and their families, even though there is probably not a church community in the nation without a family touched by autism.
Borek said more outreach from bishops and parish priests to families who are often struggling with the varied economic, practical and emotional challenges of autism seems necessary. If families with autistic children are not visible in church pews, she said, that probably just means they would be there if parishes were more welcoming or offered services they could use. The challenge remains, she said, of helping the wider society see the “beautiful potential” of each individual with autism and how easily and frequently it is overlooked.