Autism Transitions Research Project
The Autism Transitions Research Project is a research initiative funded by the Health Resources and Services Administration (HRSA grant # UJ2MC31073). The project period is September 1, 2017 through August 31, 2022. The Project Director is Dr. Lindsay Shea, Leader of the Life Course Outcomes Research Program and Director of the Policy and Analytics Center at the A.J. Drexel Autism Institute, and an Associate Professor.
Outcomes for transition age youth on the autism spectrum are poor across multiple domains including work, postsecondary education access, social inclusion, health and mental health. About 50,000 to 60,000 youth on the autism spectrum turn 18 years old each year. It is imperative to understand the needs of these youth so that we may develop and implement appropriate policies and practices to support a positive transition to adulthood. According to a 2014 article in JAMA, the national costs of helping U.S. children and adults with autism add up to over $200 Billion per year. Despite large investments in research and services for children with autism, young adult health and functional outcomes remain poor on average.
We propose a programmatic series of three studies, each salient to specific subsets of the population and particular service systems. This will yield up to date, useful, targeted and impactful findings that can inform services planning, benchmarking and public policy at a population health level. Taken together, our programmatic series of studies will significantly expand the evidence base on factors associated with healthy life outcomes among adolescents and young adults with ASD in order to improve transition care and services for this population. With a desire to maximize generalizability and the return on research investment, Study 1 -- “Factors Associated with Healthy Life Outcomes and Access to Needed Services among Transition Age Youth” -- leverages timely secondary data from several national administrative and survey datasets to address a common set of overarching aims. Two pilot studies -- Study 2 “Service Network Coordination and Social Capital” and Study 3 “Transition Odyssey” are qualitative in nature and will develop measurement protocols that can be used in future public health and services research on autism and transition. The first adapts an existing approach to measuring the social context of service provision and care coordination using innovative methods from social network analysis. The second adapts and integrates methods from two existing studies to develop a feasible, reliable and valid approach to obtaining the perspectives of diverse TAYA and their caregivers. Together, they will lay a foundation for future research on social determinants across multiple levels that influence outcomes. Study 1 will result in scientific manuscripts and reports for submission in all years of the initiative. Studies 2 and 3 will result in scientific manuscripts for submission in years 3, 4 and 5.
For this project, we defined transition-age youth broadly as 14-29 to capture transition processes, the outcomes of transition as youth emerge into adulthood, and the factors that influenced these outcomes. However, within several of our specific articles, age ranges may vary as we will have to make use of the ages available in any given dataset.
This project is being supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under UJ2MC31073: Maternal and Child Health-Autism Transitions Research Project. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.