The transition from adolescence to adulthood is a critical period for individuals living with autism spectrum disorders (ASD). Many of the support and intervention services available to children and youth with ASD end between ages 16 and 21, and there are limited services available specifically for adults with ASD, particularly those without intellectual disability. Adults with ASD are often reported to be unemployed or underemployed, have minimal independence in daily living activities, and rarely report romantic relationships or marriage. However, the methodology used in prior research (e.g., clinic referred samples, survey samples) may lead to over-representation of individuals at risk for the poorest outcomes. Due to these gaps in our present understanding of the experience of adolescents and adults with ASD, the proposed study is responsive to the area of interest "Psychosocial factors promoting success in key transitions to independence for individuals living with ASD."
The goal of the Carolina Autism Transition Study (CATS) is to characterize patterns of service utilization and longitudinal outcomes of individuals with ASD between the ages of 16 and 22 (as of 2014). Further, CATS will identify characteristics of these adolescents and young adults at age 8 (e.g., cognitive functioning, school placement, gender, race/ethnicity) to examine their influence across multiple outcomes later in life. Three separate groups of transition-aged individuals will be used to evaluate these aims: individuals identified with ASD (n=609); individuals with intellectual disability without ASD (n=1296); and a population control group (n=3045). Outcomes between the ages of 16 and 22 will be determined for these 3 groups through linkages with 14 databases maintained by South Carolina's (SC) Revenue and Fiscal Affairs Office (RFA). Outcomes of interest include healthcare utilization (prescriptions, associated medical conditions, hospitalizations), serious life events (death, abuse/neglect, emergency room visits, criminal charges), therapeutic interventions, educational accomplishments, employment, and social service eligibility (including Social Security, vocational rehabilitation, disability board assistance, and others).
CATS will provide a clear and objective assessment of the life experiences of our participants as they age out of the established systems of care for youth and enter the adult world. The innovation behind CATS lies in its methodology: Because the participants in this study were identified through population-based surveillance, this will be the largest and most representative transition-aged sample in the existing literature. Further, our team is in a unique position to understand multiple outcomes for this population by partnering with SC's unique data warehouse, RFA. By identifying critical periods at which individuals with ASD are most at risk for losing support services or encountering negative life events (problems with the law, abuse/neglect), we can tailor large-scale efforts to target specific youth and specific time periods. In addition, by identifying individual characteristics at age 8 that predict positive or negative outcomes, we can better target our intervention efforts in school-aged children to promote success. As a result, CATS is able to provide a comprehensive, efficient, and cost-effective opportunity to examine a wide range of longitudinal outcomes in a large and diverse sample of individuals with ASD. As more policymakers and families begin to advocate for aging children with ASD, CATS could have tremendous and immediate implications for informing policy and the necessity of specific programs to ensure successful transition to adulthood in individuals with ASD.