autism spectrum disorder (ASD) is a complex disorder characterized by impairments in verbal and nonverbal communication and social interactions, as well as restrictive or repetitive behaviors. In addition, nearly half of persons with ASD have major coexisting medical conditions, as well as mental health conditions, behavioral disorders, and polypharmacy. The combination of developmental disability and comorbid conditions increases dependence on the health care system particularly during adolescence and adulthood. Currently, two million people have an ASD diagnosis, most are adolescents or younger, signifying an impending "tsunami" of youth with ASD transitioning into adulthood. We must prepare these youth, their caregivers, and the health care system for this transition process. Heath care transition ("transition") and health-related independence ("independence") services assist youth in the transition from pediatric to adult health care and teach youth to manage their health and self-care needs. Unfortunately, our previous research shows less than a quarter of youth with ASD receive basic transition services, and no study has examined how often youth are taught to manage their own health and self-care needs. Therefore, it is unclear how youth and caregivers define successful transition, what resources are needed to reach transition and independence goals, and what factors promote transition, independence, and caregiver well-being. With the support of this Fiscal Year 2013 autism Research Program (ARP) Idea Development Award, we will address these gaps in the literature. This proposal addresses several of the ARP areas of interest including psychosocial factors promoting success in key transition to independence, factors promoting success in family/caregiver well-being, and conditions co-occurring with ASD. Within Aim 1, we will use qualitative methods, focus groups, and individual interviews to explore how caregivers and youth define a successful transition, appropriate independence, and what factors contribute to these positive outcomes. Aim 2a will develop the first ASD-specific independence measure using the findings from Aim 1. In Aim 2b, this outcome measure and a previously developed transition measure will then be used in a large quantitative study to examine the extent to which potential predictors are associated with transition success and independence. We will also examine how these predictors and outcome measures are associated with caregiver well-being. The proposed project is innovative in how it promotes a new area of research in the ASD field (health care transition), develops a new measurement tool to assess health-related independence, and utilizes unique research methodology by performing individual interviews with youth with ASD. Ultimately, this project will promote the idea that youth with ASD deserve to be treated as adults and to "experience an adult model of care" whenever possible. The move to an adult model of care and increased youth independence means a significant paradigm shift for the entire family and health care system. This project will have a significant impact on the field of ASD research by developing tools to measure independence and filling a current void in the research. In the short term, it will improve health care service delivery by increasing our understanding of the services caregivers and youth experience and need. The measurement tool created in Aim 2a may be used in various fields to assess health-related independence and is likely to expand the way in which transition services are conceptualized. By demonstrating the feasibility and value of individual interviews with youth with ASD, it will create a new standard for this type of transition research. In the long term, this project will improve transition and independence services so youth receive appropriate care as they transition into adulthood. Lastly, this project will provide youth with ASD and their families a voice in the process, thus increasing the likelihood of success.
Interagency Autism Coordinating Committee (IACC)
Autism Research Database (AFD)
