It is widely known that adults with autism spectrum disorder (ASD) face obstacles that impede their quality of life. It is not as clear why so many become disconnected from services and educational or employment opportunities once they leave high school.
In 2015, OAR awarded a two-year $30,000 grant to Connie Anderson, Ph.D., assistant professor in the Department of Health Sciences at Towson University, to conduct a study that addressed that question. Her qualitative, interview-based study sought to identify what causes disengagement among young adults from participation in services, post-secondary education, and the overall community.
Dr. Anderson interviewed families of youth who were certificate-bound, exiting high school around age 21, and those who were diploma-bound, exiting around age 18. She also included families whose young adult had been out of high school anywhere from one to 15 years, highlighting the different realities faced as time passes.
In total, Dr. Anderson and her research team interviewed parents from 35 families and 12 young adults with autism. By the end of 2017, they had completed their analysis on two topics: adult services and postsecondary education.
Findings: Adult Services
Adult services for people with ASD include case management, day services, residential services, and vocational rehabilitation or other employment support. An array of federal and state agencies administer the services. Eligibility varies greatly depending on where an individual falls on the autism spectrum in terms of intellect, ability to self-regulate, and other factors. These are key themes that emerged in this topic:
- Information and access: Families were often bewildered by the confusing array of adult services. High schools did not always effectively guide transitioning families through this maze. Young adults had first to qualify for services and then be accepted by a service-providing agency. Those who had severe behaviors (e.g., aggression, elopement) often had difficulty finding a willing provider, while those who were more cognitively able rarely qualified for services. Youth who graduated from high school with typical peers faced a gap, with most services unavailable until age 21.
- Program and staff issues: Programs, which varied greatly in quality, were seldom designed with ASD in mind. They were generally underfunded; low pay, high turnover, and a lack of ASD-related knowledge among staff were common. Formal goals frequently went unmet, and there was little accountability.
- Young adult characteristics/fit: Families struggled to characterize where their young adult was on the spectrum and what this meant regarding services. Parents of those with intellectual disability feared little thought was being given to future potential; parents of the cognitively able were distressed that little help was offered to address ASD-specific challenges. Co-occurring medical or mental health concerns complicated matters for all.
Findings: Post-secondary Education
Eighteen of the 35 families reported that their young adult had a degree-seeking college experience. These key themes emerged:
- Student preparedness: By high school’s end, most students with ASD were well prepared for college academically though many still struggled with ASD-associated social-communication deficits, executive functioning challenges, and mental health issues (e.g., anxiety). Such areas of weakness often went unaddressed during high school as parents and youth focused on GPAs and test scores. Those who received concrete help with social and self-advocacy skills in high school did better than those who did not.
- Student/college fit: When a student’s challenges were taken into account, success was more likely. Students who stayed closer to home and chose a smaller college with a culture accepting of difference often did better. The ability to ease in by taking a reduced load was important but not always accommodated by four-year schools requiring full-time attendance for financial aid or on-campus housing.
- Student challenges and supports: College students with ASD often struggled socially, sometimes becoming isolated from peers. Issues with organization and planning led to falling behind and panic; a tendency not to tell anyone when they were in trouble made things worse. Academic accommodations often were not designed to address social and executive functioning issues. Frequently, families stepped in, trying to monitor student performance, provide emotional support, and advocate when the student could not. Some families paid for peer mentors, tutors, or formal student support programs. Unfortunately, young adults with ASD were not always willing to accept parental or other help.
- College crises: In five cases, a crisis at college led to a young adult’s premature return home. These quotes are from the interviews:
- “Even in high school, there has always been a delay in my life. It feels like the learning disability, the supports they come up with are just not actually things that are going to help… By two weeks into the second semester, I just broke down, quit one day, and two days later I am contemplating suicide…”
- “He didn’t say anything. He just didn’t go to class, didn’t take exams. Then I asked him what was wrong. He didn’t tell us. He said ‘everything is fine’ until the end. We found out anyway. He was just lying. He just tried to cover it up. I asked him. He said, ‘I just don’t feel good. I feel depressed. I don’t feel as though my life can continue. I even want to kill myself.’”
- “He was pretty wrecked. He thinks he failed. This has been a kid that… he’s never felt unloved. He’s never felt different. He knows he’s different. He knows he has barriers and stuff, but he’s never felt stupid. He’s never felt out of place. It was just wrong.”
The conclusion reached by Dr. Anderson regarding both adult services and post-secondary education is that services and support are often lacking. In regard to adult services, she notes, agencies frequently operate with inadequate funding, and most have little ASD-specific expertise.
For young people with ASD headed to college, she believes that a better understanding of how both organizational practices and ASD-associated difficulties interfere with success may help high schools, colleges, and parents more effectively support those students. It is especially important to address non-academic needs (e.g., social-communication deficits, executive functioning challenges, mental health concerns).