In 2017, three researchers, Collette Sosnowy, Ph.D., Paul Shattuck, Ph.D., and Chloe Silverman, Ph.D., at the A.J. Drexel Autism Institute completed a one-year OAR-funded qualitative study, “Measuring What Matters.” The goal of the study was to develop a contemporary conceptual framework of stakeholder perspectives about outcomes for adult autism in order to inform better measures and ultimately improve services and policies.
They interviewed 20 young adults with autism and 21 parents and asked about what they thought were good outcomes, what challenges they faced, and what help they needed in order to achieve their goals. They also interviewed 11 service professionals about their work with transition-age youth, the challenges they saw for families, and what kind of help they needed to best serve their clients.
The major finding was that participants saw living independently, post-secondary education, and work as means to achieving broader goals, not just measurable achievements. For the young adults interviewed, for example, gaining independence was a way to make their own decisions and take on new responsibilities.
What independence meant varied according to the needs and capabilities of each young adult. Twenty-eight young adults still lived at home, although some were in college and only lived at home during the summer.
While most wanted to live away from home if they were not already, they felt stymied by a lack of employment opportunities and financial independence. They wanted services that could help them with daily living skills or finding a job, but weren’t sure where to go for help.
Most parents said their child wanted to live independently, but some didn’t think their child understood all of the responsibilities it entailed. Others had children who wanted to stay at home. Whichever the scenario, parents approached transition gradually and carefully in order to make it go as smoothly as possible. Parents’ primary concerns were for their child’s long-term security, safety, and quality of life.
Twenty-two young adults were either currently in college or had gone to college, including community college, a four-year college, or individual classes. Both young adults and parents described having to work especially hard to keep up with coursework. Some parents felt they needed to remain involved in their child’s daily lives in order to help them manage their time and stay organized. They tried to balance their involvement with their child’s efforts to do these things for themselves.
Several parents wished that colleges offered support other than academic help. In particular, they wanted programs that could facilitate their child’s efforts to develop friendships with their peers, since making friends was often a challenge. The young adults interviewed described having difficulty with making friends at first, but many of them did form close relationships with people who shared their interests.
Only 10 young adults worked at least part time. Both parents and young adults valued the social benefits and opportunities to develop independence and be a part of the community that employment offered. For parents whose children who were more impaired and couldn’t take on full-time competitive work, these benefits seemed even more important than achieving financial independence. The young adults interviewed emphasized that financial independence made other goals more achievable.
As other studies have found, participants reported significant obstacles to finding and keeping a job and wanted more help. They felt they would have more success in workplaces that were supportive of their needs and would provide accommodations. However, only a few young adults had worked in a setting like this.
A lack of opportunities that fit the young adult’s abilities, needs, and preferences was another major concern. Some parents felt that their children were steered towards jobs that were underpaid, uninteresting, and for which they were overqualified.
Service providers’ perspectives were similar to those of parents and young adults in terms of goals and approaches to transition. Their primary challenges were working with limited resources and serving a very diverse population, with individuals who each had unique needs. Their efforts often included significant and sustained efforts to develop relationships with businesses and work with limited resources, such as insufficient job coaching.
Inadequate Transition Services
All three groups felt that services were insufficient, possibly in part because they do not align with young adults’ and parents’ priorities and do not offer the kind of help they need to support the transition to adulthood. Overall, both parents and young adults made it clear that supports and services needed to be flexible enough to meet individual needs and more comprehensive, continuous, and integrated in order to be most useful.
How This Study Contributed to the Field
- It adds much needed research about what life is like for transition-age youth and adults and services available to them. As the researchers noted, the more research there is on a topic, the more future research can build on that.
- Research and advocacy are complementary, enabling greater progress toward a shared goal: better outcomes for youth and adults with autism. Research that includes the perspectives of families and individuals on the spectrum helps support organizations like OAR and families as they work to increase awareness of autism and provide resources and support.
- Decision makers listen to both advocates and researchers. The knowledge and life experiences of families combined with the findings from research that demonstrate needs and the barriers and facilitators to better outcomes can guide decisions makers to allocate funds to the most efficient and effective solutions.
These findings suggest that the data researchers currently rely on to describe this population’s challenges do not capture the full picture of what life is like after high school for young people on the spectrum. It also tells us that more autism-specific resources are needed to help young people make the transition to adulthood and that providers need to consider how best to tailor services that may currently be too general.