An adult with autism watches television in his apartment. In one of the first studies to look at the lives of people with autism as they hit middle age, researchers found adults who were struggling. (Francine Orr/Los Angeles Times/TNS)
As adults with autism mature and move into middle age, they are finding it difficult to live independently, hold down jobs and sustain relationships, researchers say.
A new study is providing a glimpse into the daily lives of adults with autism as they hit their 30s and 40s, a time period that’s traditionally received little attention from researchers looking at the developmental disorder.
“Parents of kids with autism are usually really energized to help their child reach maximum potential,” which can prompt more research said Megan Farley, senior psychologist at the Waisman Center at the University of Wisconsin-Madison, and the lead author of the study, which was published recently in the journal Autism Research. “But there is a growing focus on this older population and you’ll see a lot more coming on this topic.”
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Farley’s research looked at a group of 169 adults ages 22 to 51 with autism, who had participated in a study in the 1980s of Utah children with autism. Either they or their parents or caregivers provided the information. More than 75 percent of study participants had intellectual disability in addition to autism.
When it came to employment, 12 percent of those in the study had full-time jobs without support. A similar number had part-time jobs without special supports. Jobs held by participants ranged from janitorial work to restaurant service to trucking. However, 33 percent of those in the study attended day programs and 20 percent were unemployed.
Farley said it was noteworthy that some of those in the study who did not have intellectual disability had difficulty holding down jobs, but others with both diagnoses “were gainfully employed on the open marketplace at a full-time level,” she said. “This was surprising and exciting.”
But the report also noted “an unmet need for effective strategies aimed at securing and maintaining meaningful work opportunities for adults with ASD.”
Most of the study participants — 47 percent — lived at home with their families, while 39 percent lived in group homes. Only 9 percent lived independently in their own home or apartment. In addition, 44 percent had a legal guardian, nearly all of whom were their parents.
“This highlights the fact that there is a lot of unfinished business for parents as they age,” Farley said. “They need to establish a plan for their adult sons and daughters for when the parents are no longer around.”
Socially, participants had little experience with dating and relationships. Only 5 percent had experienced marriage and 75 percent had never dated. However, when parents were asked whether their adult children wanted a romantic partner, 67 percent said they believed their child was not seeking such a relationship.
While the study found that more than 60 percent of participants were involved in at least one club or organization with regular group meetings, nearly half reported spending little or no time with peers.
Anne Roux, a research scientist at Drexel University’s A.J. Drexel Autism Institute in Philadelphia, studies transition issues but was not involved in the research. She called the study “groundbreaking” for its focus on this particular age group.
The results reveal a greater need for support for adults with autism around employment and social interaction, and additional support needed for families who are providing much of the care, she indicated.
“It’s remarkable when you think about the level of unmet need,” Roux said. “Are the types of programs we’re hearing about really meeting the need of the overall population? Not so much.”