Autism after high school: Making the transition

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."