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

This research focuses on self-reported community participation preferences and experiences among autistic adults. The ability to participate in communities is a key facet of living an independent, meaningful, and fulfilling life. Among those who are able to meaningfully participate in their communities, previous research has documented greater feelings of well-being and self-reported health, with decreasing levels of social isolation, depression, and anxiety. Autistic adults have similar desires to participate in their communities as neurotypical peers, yet data is lacking about their community participation desires and experiences, along with an understanding of how existing service and support systems influence access and ability to meaningfully participate. Autistic adults are also likely to experience specific barriers to community participation given social and communication differences are a core component of autism spectrum disorder (ASD), and accessing transportation is a noted logistical barrier for this population. Research also documents the need to hear from autistic adults directly, as they remain significantly understudied when compared to children, and reliance on caregiver- or proxy-reported information is not always aligned to the wants and needs of autistic individuals. To address this gap, we are conducting a longitudinal survey effort with autistic adults who participated in the Pennsylvania Autism Needs Assessment (one of the largest existing studies with autistic adults) and agreed for future contact. Autistic adult participants will be recruited to complete a similar, yet updated, survey across two annual waves to create up to three distinct timepoints for longitudinal and cross-sectional analyses. Recruited individuals comprise a diverse group among multiple dimensions with strong variation in participant urbanicity, gender, race/ethnicity, and socioeconomic status.