Autism Transitions Research Project (ATRP)

Project Number: UJ2MC31073
Grantee: Drexel University
Department/Center: AJ Drexel Autism Institute
Project Date: 09/01/2017
Principal Investigator: Paul Shattuck

Final Report

Pending

Age

  • Adolescence (12-18 years)
  • Young Adulthood (19-25 years)

Targeted/Underserved Population

  • Special Health Care Needs

Abstract

Background: Outcomes for transition age youth (TAY) with autism are poor across multiple domains including work, postsecondary education access, social inclusion, health and mental health. About 50,000 youth on the autism spectrum turn 18 years old each year. It is imperative to understand the needs of TAY on the autism spectrum so that we may develop and implement appropriate policies and practices to support their optimal transition to adulthood. Objectives: We propose a programmatic series of studies. Each study will address aims specific to a particular subpopulation, developmental stage and/or service system. For each study we include a focused statement of the related research gap, specific aims, a brief overview of deliverables and a concise statement of how the study responds to the research gap and links to improving health and wellbeing and/or service delivery. Public Health Significance: 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. Unique Features and Innovation: We include a mix of main and pilot studies, the latter specifically intended to lead to additional research proposal submissions to maximize the leverage of the ATRP investment and wring the most productivity possible out of precious taxpayer funds. The pilot study on services coordination builds on a previous HRSA investment and for the first time will apply methods of social network analysis to examine the transition "services cliff" facing so many youth on the autism spectrum. Methodology: Our proposal includes a mix of quantitative and qualitative methodologies including secondary analysis of large national datasets, interviews with youth on the autism spectrum and family members, and social network data collection and analysis. Expected Results: Together, our 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" as called for in this RFP. We will produce manuscripts for submission to peer-reviewed journals as well as related information products crafted to be accessible to general audiences and Disseminated through our pre-existing website and social media platforms that have a proven record of reaching policy makers, advocacy organizations, professional associations and news organizations. Impact: Our studies will yield useful, targeted and impactful findings that can inform services planning, benchmarking, evaluation and public policy at a population health level. Content Terms: Autism, Life Course, YSHCN Transition to Adulthood, Access to Health Care, Coordination of Services, School Outcomes and Services. Targeted Population and age ranges: Special health care needs (autism); Adolescence (12-18 years) and Young Adulthood (19-25 years).

Publications

Listed is descending order by year published.

Anderson KA, Hemmeter J, Rast JE, Roux AM, Shattuck PT. Trends in Supplemental Security Income Payments to adults with autism.

Anderson KA, Hemmeter J, Rast JE, Roux AM, Shattuck PT. Trends in Supplemental Security Income Payments to Adults. Psychiatry Online. April 2020.

Graham Holmes L, Strassberg DS, Himle MB. Family sexuality communication: parent report for autistic young adults versus a comparison group. J Autism Dev Disord

Graham Holmes L, Zampella CJ, Clements C, et al. A lifespan approach to patient-reported outcomes and quality of life for people on the autism spectrum. Autism Res. 2020;13(6):970-987. doi:10.1002/aur.2275

Kirby AV, Holmes LG, Persch AC. (2020) Longitudinal change in parent postsecondary expectations for youth with disabilities, Disability and Rehabilitation, DOI: 10.1080/09638288.2020.1718779

Roux, A.M., Rast, J.E., Anderson, K.A. et al. Vocational rehabilitation service utilization and employment outcomes among secondary students on the autism spectrum. J Autism Dev Disord (2020). https://doi.org/10.1007/s10803-020-04533-0

Shattuck PT, Garfield T, Roux AM, Rast JE, Anderson K, Hassrick EM, Kuo A. Services for Adults With Autism Spectrum Disorder: a Systems Perspective. Curr Psychiatry Rep 22, 13 (2020). Https://doi.org/10.1007/s11920-020-1136-7

Zabllotsky B, Rast J, Bramlett MD, Shattuck PT. Health care transition planning among youth with ASD and other mental, behavioral, and developmental disorders. Matern Child Health J 24, 796–804 (2020). Https://doi.org/10.1007/s10995-019-02858-6

Zablotsky, B., Bramlett, M., Rast, J.E., Shattuck, P.T. Health care transition planning among youth with ASD and other mental, behavioral, and developmental disorders. Maternal and Child Health Journal

Rast JE, Roux AM, Shattuck PT. Use of vocational rehabilitation supports for postsecondary education among transition-age youth on the autism spectrum. J Autism Dev Disord (2019).pp 1-10.

Roux AM, Garfield T, Shattuck PT. Employment policy and autism: analysis of state Workforce Innovation and Opportunity Act (WIOA) implementation plans. Journal of Vocational Rehabilitation: 2019;51(3):285-298.

Roux AM, Rast JE, Garfield T, Anderson KA, Shattuck PT. Prevalence and correlates of work experiences among high school students on the autism spectrum. Intellect Dev Disab. 2019.