As the numbers of children diagnosed with ASD increase, there is a growing concern that the resulting increase in adults diagnosed with ASD will overwhelm current educational, employment, and residential support programs. Indeed, the emerging literature on transition to adulthood presents a bleak prognosis. However, little is known about the long-term outcome and needs of middle age and older adults with ASD. It is simply unknown whether the quality of life improves, declines, or plateaus for individuals with ASD who are past the transition to adulthood. Additionally, little is known about how symptomatology changes from childhood to mid-adulthood and what factors predict adult outcome. This is a relatively unchartered research field. The purpose of this project is to conduct a longitudinal study examining adult outcomes in middle-aged adults with ASD who were diagnosed during childhood by the University of North Carolina TEACCH Autism Program. This research capitalizes on a unique database of over 7,000 children with ASD served between 1965 and 2000 who are now adults. This database provides an opportunity to: 1) conduct a large scale caregiver survey describing the quality of life (education, employment, social opportunities, independent living skills) and service use and needs of middle-aged adults with ASD and examine the relation between childhood factors and adult outcomes; 2) conduct an in-person assessment of a subgroup of surveyed individuals to examine developmental trajectories of symptomatology, adaptive behavior, and intellectual ability from childhood through adolescence and into mid-adulthood; and 3) provide a platform for a longitudinal study following a well-characterized group of adults with ASD into older adulthood. The data generated from this research have the potential to make a significant impact on legislative and community service agency decisions that will contribute to improved quality of life for adults with ASD.
Interagency Autism Coordinating Committee (IACC)
Autism Research Database (AFD)
