News and Knowledge

In 2015, OAR’s Board of Directors authorized funding for eight new applied autism research studies in 2016. These new grants, totaling $229,827, bring OAR’s total research funding to over $3.5 million since 2002. This is the sixth of eight previews to be featured in The OARacle this year.

When researchers evaluated data from the National Longitudinal Transition Survey, they found that:

• 9.1 percent of young people with autism were receiving speech therapy
• 41.9 percent were receiving case management
• 39.1 percent were receiving no services at all

Additionally, adults with autism spectrum disorder (ASD) are least likely to live independently and more likely to live with parents compared with young adults with learning, intellectual, or emotional disabilities. Inclusion in community activities is also limited as is participation in education and employment.

It is a bleak picture and not one that is likely to surprise many young people with ASD or their parents. Up to this point, research has been unable to tell us what is causing young adult disengagement from services or educational and employment opportunities and under what circumstances. Corrective action has therefore been difficult to envision, hindering advocacy efforts.

The Study

In order to better understand the causes of that disengagement, OAR-funded researcher Connie Anderson, Ph.D., director of the Towson University Post Baccalaureate Certificate Program in Autism Studies, is interviewing 35 parents and 13 young adults with ASD about their experiences after high school. She is intentionally including families of youth across the autism spectrum, both those who were “certificate-bound,” exiting high school around age 21, and those who were “diploma-bound,” exiting around age 18.

The study, Adults with ASD After High School: Pitfalls and Possibilities, builds upon an existing project funded by Towson University and the A. J. Drexel Autism Institute. It will also lay the groundwork for more focused quantitative studies — a necessary step before the field can move forward as discussed in the recent National Autism Indicators Report: Transition into Young Adulthood.

Study Goals

Dr. Anderson hopes to find answers to questions like:

• What difficulties do families encounter as they locate, evaluate, and attempt to access services?
• If services are received, how appropriate and worthwhile are they?
• If services are not received or not appropriate, what do families do?
• What additional obstacles stand in the way of young adult participation in post-secondary education or the world of work?
• Does type or level of disengagement vary for different categories of individuals on the autism spectrum?
• If young adults with ASD “fall off a cliff” or “hit a brick wall,” are there different types of cliffs or different sorts of walls?
• How does the path of a young adult leaving high school with a certificate of completion at 21 differ from the path of one graduating with a diploma at 18?

The aims for the study are to:

• Describe the experiences of young adults with ASD and their families as they attempt to access services and educational/vocational opportunities
• Develop hypotheses regarding individual, family, and community characteristics associated with disengagement or participation
• Develop a conceptual model of disengagement outlining specific barriers faced by specific groups of young adults with ASD

Methodology

Families will come from Maryland, the District of Columbia, and Virginia – regions representing very different service systems yet close enough so the research team can conduct face-to-face interviews. The intention is not to cover every service system across the nation, but to identify differences between systems that have a significant impact or that will need to be taken into account in eventual national quantitative research.

Practical Outcomes

This study will offer insights regarding young adult disengagement that imply possible solutions. Some examples are:

• What is going wrong during the high school years, including cursory transition plans; underestimation of the trauma of losing all routines at transition; and, in the case of diploma-bound youth, an emphasis on academics at the expense of daily living, social, and executive function skills that leaves these youth ill prepared to cope in adult settings, including college.
• Lack of services and inappropriate services, often because various systems have been designed for people who have disabilities other than ASD.
• A widespread lack of understanding of ASD on the part of the general public, especially its more invisible aspects such as social blindness. This lack often contributes to problems in larger systems, contributing to young adult failure in college or the workplace, and potentially leading to a downward spiral of isolation, low self-esteem, and depression.
• A staggering amount of financial and emotional family burden when systems intended to serve young adults with ASD are inadequate or nonexistent and families try to meet the needs of their young adult on their own.
• Success stories that highlight a system or institution that is “doing it right.”

This study will address a significant gap in the knowledge regarding the lives of young people with ASD in the years after they leave high school. It will identify both major challenges and successes and begin to categorize these based on individual, family, and community characteristics. It will permit us to understand the circumstances behind the disheartening national statistics on young adult outcomes and provide a preliminary conceptual model of disengagement that illustrates what is going wrong (as well as right), and for whom.