Over the next decade, a half million people with autism spectrum disorder (ASD) will age into adulthood. Compared to peers who received special education for other disabilities, a range of outcomes are significantly poorer for these young adults. Existing conceptual frameworks and measures for adult autism outcomes fall short for several reasons. First, many of the commonly used measures were developed years ago for people with intellectual disability, yet most youth now on the spectrum do not also have an intellectual disability. Second, the recent movement in health research emphasizes patient-centered outcomes that are developed through meaningful engagement with representatives of the population that the research aims to help. Most current measures, however, were developed without input from young adults with ASD, parents/caregivers, or professionals working in the field. Third, researchers recognize “emerging adulthood” as a critical and transitional period of the lifespan, yet current autism outcome measures do not take the developmental challenges that accompany it into account. In addition, we do not have a framework for understanding how variables such as access to services and demographics influence outcomes. This rigorous qualitative study seeks 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.
Interagency Autism Coordinating Committee (IACC)
Autism Research Database (AFD)
