Community Participation, Service Needs, and Health Outcomes Among Adults with Autism

The proposed research will focus on a large group of adults with autism spectrum disorder (ASD) and generate comprehensive data on their community participation preferences and experiences, with the goal of improving how services that support community engagement are designed and delivered. Meaningful participation in the community is a core component of living a healthy life. Studies show it is connected to increased feelings of well-being, improved quality of life, and better self-reported health, as well as decreased feelings of social isolation and reduced feelings of depression and anxiety. People with ASD may experience unique barriers to community participation due to social and communication differences as well as logistical barriers such as transportation. To date, very little research has gathered information directly from adults with ASD about their experiences or service use and as a result, we lack information to ensure that policies, systems, and programs are best set up to meet their needs. First, we will survey adults who previously participated in the Pennsylvania Autism Needs Assessment (one of the largest studies of adults with ASD to date) and agreed to be contacted for future research. This efficient strategy for recruiting a diverse group who live in rural, urban, and suburban areas will allow us to observe differences across race/ethnicity, geographic location, gender, and socioeconomic status. Second, we will gather information to fill major gaps in our understanding of how to maximize the benefits of community-related services. By reporting on community participation experiences and preferences, we will provide the first evidence regarding the types of community activities adults with ASD are participating in, the community activities they value, and what additional services and supports they may need to increase access and participation. Third, we will use unique methods to conduct data analyses, linking Medicaid claims and survey data.