For young adults with autism spectrum disorders (ASDs), making the transition from school to the first rites of independent adult life, including a first job and a home away from home, can be particularly challenging.

Two newly published studies show precisely how stark the situation is for finding success in employment and independent living among young adults on the autism spectrum, compared to their peers with other types of disabilities. The researchers emphasize the need to strengthen services to help adolescents and young adults and their families with transition planning.

“Roughly 50,000 youth with autism will turn 18 years old this year,” said Dr. Paul T. Shattuck, an associate professor in the A.J. Drexel Autism Institute and Drexel University School of Public Health, who co-authored both studies. “So many of these young people have the potential to work and participate in their communities. Supporting this potential will benefit everyone - the person with autism, the family, employers and society.”

Employment Outlook: Just Over Half with ASDs Had Ever Worked for Pay

In the Journal of the American Academy of Child & Adolescent Psychiatry, Shattuck’s team reports that young adults with autism spectrum disorders have worse employment outcomes in the first few years after high school than do peers who have other types of disabilities.

“Not only was the employment rate low for young people with ASDs when compared with young adults with other disabilities, but pay for jobs - if they got them - was significantly lower compared to young adults with other types of disabilities,” said Anne M. Roux, senior research coordinator at the A.J. Drexel Autism Institute, who led the employment study as a member of Shattuck’s research team while both were at Washington University in St. Louis.

They report that just over half (53.4 percent) of the young adults on the autism spectrum they surveyed had ever worked for pay outside the home within the first eight years after leaving high school. Only about one in five (20.9 percent) young adults with ASDs worked full-time at a current or most-recent job. Average pay was $8.10 per hour.

Employment rates, full-time employment status and average pay were substantially higher for young adults with other disabilities, including learning disabilities, emotional disturbance and speech/language impairment, compared to young adults with ASDs. The employment gap widened even farther when adjusted for differences in functional skills and conversational ability.

“The news is mixed,” Roux said. “This study highlights the particular difficulty that youth with autism are having during the transition into adulthood, especially youth from poorer households who are more likely to be disengaged from the services needed to secure and maintain a job.

“At the same time, half of young adults with an ASD did become employed, including youth with more challenging levels of impairment. This finding gives us hope for what might be possible with more effective preparation for employment, transition practices and workplace supports.”

In an independent editorial in the same journal issue, Dr. Patricia Howlin of King’s College London and the University of Sydney, wrote, “if young adults with autism miss out on this rite of passage, they risk transition into a world of social exclusion, financial hardship and significantly decreased quality of life. On the positive side, there is evidence that specialized, supported employment programs can be very helpful in assisting young people into work and in improving quality of life and even cognitive performance.”

Residential Status: Young Adults with ASD Less Likely to Live Independently

In another study published this week in the journal Autism, members of Shattuck’s research team report that young adults on the autism spectrum are less likely to have ever lived independently after high school, than adults with other disabilities.

“This paper suggests that the years following high school are markedly different for young adults with ASDs compared to other disability categories,” said Kristy A. Anderson, a doctoral student at the University of Wisconsin-Madison, who led the residential status study. “Notably, young adults on the autism spectrum have higher rates of coresidency in the parental home.”

Young adults on the autism spectrum were less likely to have ever lived independently since leaving high school, compared to their peers with other disabilities. More young adults with autism lived with their parents or guardians, and for longer periods of time, than did individuals with emotional disturbance, learning disability or intellectual disability. They also had the highest rates of living in a supervised living arrangement.

Young adults with an ASD also expe¬rienced the highest rates of postsecondary residential continuity (79.1 percent).

“They are residing in the parental home at higher rates and longer time periods relative to peers with other disabilities, warranting family-based services in the years following high school exit,” Anderson said.

Despite the concurrent study on employment, the researchers found no association between having held a paying job and residential outcomes among young adults on the autism spectrum.

Long-Term Research Targets the Autism Services Cliff for Adolescents

The analyses of employment and residential status were both products of Shattuck’s widely recognized research program examining outcomes and service use among adolescents and young adults on the autism spectrum. The needs of this age group are largely under-represented in research, even as many individuals diagnosed in childhood face a decline in available social services after they age out of the educational system.

The project involves long-term follow-up study on the outcomes of a large, nationally representative sample of young adults (National Longitudinal Transition Study - 2). All of the participants were initially enrolled while receiving special education services in school; they or their parents completed regular follow-up surveys for up to 10 years after the student had completed high school.

“Many families tell us it’s like driving off a cliff when their child with autism exits high school because there just aren’t many options once they enter adulthood,” Shattuck said. “Our work highlights the enormous challenges facing this vulnerable population and their families. Experimenting with innovative solutions that can help these youth is a top priority at the A.J. Drexel Autism Institute.”

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