Having autism as an adult

This article explains the difficulties of autism after high school and entering the adult world.

Melanie Tyner-Wilson is facing one of her toughest battles yet. She wants nothing more than to help her son Jay Tyner-Wilson, who is a person with autism, land his first real job.

Public school provided opportunities for Jay to gain volunteer vocational experience. There, he discovered he enjoyed working with animals -- and school offered a repetitive, structured and routine environment. But Jay is 21 years old now and aged out of the school system in May.

"The challenge is now finding a job," says his mother. "That's the golden ticket that I'm trying to figure out."

Jay did not qualify for an official high school diploma, so the path to college or career is a tricky one. Melanie laments that many people with disabilities end up living in poverty unless they have families and other resources that can save and plan for them. With an ever-increasing number of students on the autism spectrum coming through the school pipeline, questions abound as to what they can do to build a life for themselves beyond school.

A new study at the University of Kentucky College of Education helps frame the conversation around this transition. The National Institute of Mental Health (NIMH) has awarded a $693,000 grant to College of Education Professor Lisa Ruble and a cross-disciplinary team of co-investigators at UK and Indiana University-Purdue University Indianapolis.

"This funding will allow us to find ways to help reduce or eliminate the disconnect from needed services that often occurs when students with Autism Spectrum Disorder (ASD) complete school," Ruble says.

Melanie says her son is a person with multiple skills that would be of value to an employer, but who would need additional support.

"The powerful thing about this study is that it brings national attention to it beyond just some parent like me saying 'oh dear, my poor child,'" she says. "It is exciting because when something gets researched, it gets attention and it counts. It formalizes things and forces people to begin to pay more attention in this area. We have all kinds of people like my son Jay in the far reaches of this state and we need to figure out how we are going to meet their needs and give them a quality of life."

The study will further the research team's previous work with an intervention called the "Collaborative Model for Promoting Competence and Success" (COMPASS) for young children with ASD. COMPASS is a parent-teacher consultation model that has been shown to empower teachers, families, and above all, students, by improving educational outcomes.

While the work with COMPASS has been successful for young students, it will need to be adapted, based on stakeholder input, for students nearing adulthood and preparing to complete high school. Once adopted, it will be tested in a randomized controlled study of 32 participants. Additional variables to help understand factors that explain optimal and poor outcomes will be obtained.

Jay has been receiving services at the UK College of Education ever since he was a pre-school student at the college's Early Childhood Lab. He participates in services offered through the college's CASPER center such as social skills training and small group programs. Through the years, Jay has had the opportunity to interact with many of the college's faculty and students.

"UK is conducting research and training all these people who are going into careers to help those with autism," Ruble says. "It is uplifting because I know every student who goes through these programs helps raise the state and nation's capacity to provide services to children and adults with ASD. We need to continue to keep doing better."

Melanie is involved with the Autism Society of the Bluegrass, which is a caregiver support and advocacy group. She has had an opportunity to meet many individuals on the autism continuum. These individuals have a wide range of abilities -- some attend college, but many struggle to find employment.

"While many on the continuum have achieved postsecondary education and/or employment, there continues to be a significant number that struggle," she says. "The challenge is how we are going to plan and get what we need for these individuals."

For now, Jay is putting in lots of volunteer hours in pursuit of "the good life."

"I'm doing the same thing any parent would want for their child," his mother says. "We want to make sure our children are okay after we are gone. With Jay, it's a more involved, complicated plan. I think it's possible. I have got to figure out as a parent how to do it.

"It's been really humbling to be on this journey with my son, and it's probably the hardest thing I have ever done in life. It's also an honor because he's just an amazing person and has taught me so much as a parent."

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Young adults with autism struggle with jobs and independent living

This article discusses how adults with autism may struggle in independent living situations and in their job search.

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 experienced 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). 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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