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 seventh of eight previews to be featured in The OARacle this year.

Collette Sosnowy, Ph.D., an OAR-funded researcher and assistant research professor at the A.J. Drexel Autism Institute, plans to interview young adults on the autism spectrum, parents/caregivers, and providers for her study, Measuring What Matters: Understanding the Meaning of Outcomes for Adults on the Autism Spectrum. Dr. Sosnowy hopes the information they collect will ultimately improve services and policies.

Her goal is to answer two questions with this study:

• How do young adults with ASD, their parents/caregivers, and professionals conceptualize and prioritize both objective and subjective outcomes relative to health, community living, employment, and education?
• How do perspectives and priorities about outcomes vary by factors such as need for support, access to services, financial resources, demographics, and educational attainment?

By using qualitative methods to focus on the input of individuals and their families and reflect the everyday experiences of this diverse population, Dr. Sosnowy and her research team hope to provide a foundation for developing better quantitative measures, ultimately allowing for the design and implementation of better outcome measures.

Methodology

The team will recruit:

• Twenty young adults (ages 18-29) on the autism spectrum
• Twenty parents or caregivers of young adults (ages 18-29) on the autism spectrum
• Twenty professionals who work in the field of autism and are especially focused on youth and young adults transitioning out of high school and in high areas of need

Dr. Sosnowy intends to obtain a range of perspectives, including those of people from a variety of socioeconomic and racial/ethnic backgrounds. Participants will not necessarily be related to each other (i.e. young adults and their parents) or know the professionals being interviewed.

Dr. Sosnowy and her team will recruit participants from the Philadelphia-Camden-Wilmington area, in the same region as the location of the Institute in Philadelphia. “Recruiting local participants will also help us better understand participants’ references to specific regional programs, educational systems, and services in their interview responses, which will in turn aid in data analysis,” Dr. Sosnowy notes in her proposal.

The professionals recruited for the study will include service providers such as program administrators, policymakers, and advocates. They will be recruited through the Institute’s Outreach Core and recommendations from other participants. The research team will also promote the study via websites and social media accounts and through other organizations.

The survey will collect information including demographics, diagnosis, educational background, work experience, social life, and service usage. Young adult and parent participants will complete the survey either online or on paper prior to the interview.

In-depth individual interviews will be conducted with young adults, parents, and professionals to learn about their perspectives about outcomes in the context of their lives. Young adult participants can choose to be interviewed instead via videoconference, telephone, online chat, or email.

The questions for the young adults and their parents will include asking about:

• The young adult’s transition to adulthood
• Level of success with external outcomes including employment, independence, education, and social relationships
• Thoughts on subjective outcomes such as personal satisfaction
• Former and current expectations for their lives
• What they consider to be successful or “good” outcomes
• The kinds of supports and structures they need to achieve them

The goal is to gather a sense of the of past, present, and future lives of the participating young adults in order to develop a nuanced picture of their aspirations and their subjective sense of what constitutes a successful transition to adulthood.

Interviews with professionals will ask about their work in the field, their perspective on the service needs of young adults, and their understanding and expectations of outcomes.

Outcomes

The results of this study will provide these primary outcomes:

• Filling an important gap in understanding the unique needs and perspectives of young adults with autism, particularly by soliciting their opinions directly
• Developing a theoretical and conceptual framework for understanding outcomes that can inform programs and policies and inform recommendations for improvement
• Substantially expanding the scientific literature that is directly informed by people with autism and other stakeholders

The study will also contribute to the development of a Transition Academy to be based at Drexel University. The academy will serve as a national model for how a community-oriented urban university can generate positive impact on outcomes for young adults with autism. It will inform a collection of innovative projects that foster an increase in learning, working, and community living opportunities for emerging adults with a wide spectrum of abilities.

Soliciting the perspective of multiple stakeholders — especially young adults themselves — ensures that the viewpoints of those most impacted are taken into account. This study will be the first to examine entrance into adulthood for youth with autism from the perspectives of multiple stakeholders, most importantly from the perspective of those living through that entrance.