Out in the Cold: Adults with Autism Spectrum Disorders Post High School

Background:  National data have revealed that adults with autism spectrum disorder (ASD) are not faring well as a group in the years post high school. Few live independently, many are disengaged from services, and participation in post-secondary education and the world of work is often restricted.

Objectives:  To move beyond national statistics and determine why so many young adults with ASD are disengaged from services and educational or vocational opportunities in the years post high school.

Methods:  Utilizing a qualitative, grounded theory approach, 90 minute interviews were conducted with twenty parents of young adults with ASD who were 1-15 years post high school. These young adults had been either “certificate-bound,” exiting high school around age 21 (n=7), or “diploma-bound,” exiting around age 18 (n=13). Inclusion of both groups yielded experiences from across the autism spectrum. Parents shared information about their young adult’s experiences surrounding transition. Interviews were transcribed and de-identified. We used Atlas.ti to apply the constant comparative method. First, key themes based on participants’ experiences and beliefs were identified (e.g. a number of families described how services provided to their adult child were inappropriate and did not meet the adult child’s needs). Second, material associated with each theme was divided into meaningful categories (e.g. “inappropriate services” was subdivided into access, program, and staffing issues). Finally, statements of relationship were developed to link key themes, categories, and outcomes. An example would be the linking of one theme – the fact that ASD is misunderstood by people in many institutions and settings – to another – services that don’t meet the needs of people with ASD.

Results:  

You walk outside the public school system, you hear the doors slam behind you. They are iron, steel doors. They are not letting you in. That money’s over. And you’re in a world of like what just happened?  – mother of a 30 year old man with autism.

School transition processes were frequently judged inadequate. Youth crises surrounding transition were common and sometimes severe. Families often found adult services inaccessible or inappropriate, forcing the “round peg” of ASD into the “square hole” of a program developed for people with other disabilities. Social-emotional delay and lack of independent living skills hindered success at college while the interview process and social complexity of the workplace presented barriers to those seeking employment. When other systems failed to meet young adults’ needs, families struggled to do so with substantial emotional and financial consequences. Success stories and imagined solutions provided insight into programs and approaches that may yield more encouraging outcomes.

Conclusions:  This qualitative study takes the initial steps necessary to generate insight into the mechanisms and experiences behind dismal national statistics on outcomes for young adults with ASD. It identifies major challenges and successes, and begins to categorize these based on individual, family and community characteristics. It therefore provides a preliminary conceptual model of disengagement that illustrates what is going wrong (or right), and for whom – a necessary precursor to developing effective strategies to improve outcomes.