Autism Transitions Research Project (ATRP)
Principal Investigator: Paul Shattuck
Project Number: UJ2MC31073
Grantee: Drexel University
Department/Center: AJ Drexel Autism Institute
Project Date: 09/01/2017
- Adolescence (12-18 years)
- Young Adulthood (19-25 years)
- Special Health Care Needs
AbstractBackground: 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.
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).
Listed is descending order by year published.
Benevides TW, Tao S, Becker A, Verstreate K, Shea L. Occupational Therapy Service Delivery Among Medicaid-Enrolled Children and Adults on the Autism Spectrum and With Other Intellectual Disabilities. Am J Occup Ther. 2022;76(1):7601180100. doi:10.5014/ajot.2022.049202
Hotez E, Rosenau KA, Fernandes P, Eagan K, Shea L, Kuo AA. A National Cross-Sectional Study of the Characteristics, Strengths, and Challenges of College Students With Attention Deficit Hyperactivity Disorder. Cureus. 2022;14(1):e21520. doi:10.7759/cureus.21520
Lord C, Charman T, Havdahl A, et al. The Lancet Commission on the future of care and clinical research in autism. Lancet. 2022;399(10321):271-334. doi:10.1016/S0140-6736(21)01541-5
Rast JE, Roux AM, Fernandes SJ, D'Silva V, Shea LL. Hospital Inpatient Stays for Autistic Youth and Youth With Other Disabilities. Pediatrics. 2022;149(Suppl 4):e2020049437R. Doi:10.1542/peds.2020-049437R
Roux AM, Rast JE, Shea LL. Family Perceptions of Health Care Access for Autistic Young Adults Receiving Disability Services. Pediatrics. 2022;149(Suppl 4):e2020049437S. doi:10.1542/peds.2020-049437S
Schott W, Tao S, Shea L. Co-occurring conditions and racial-ethnic disparities: Medicaid enrolled adults on the autism spectrum. Autism Res. 2022;15(1):70-85. doi:10.1002/aur.2644
Schott W, Tao S, Shea L. Emergency Visits for Autistic Children and Children With ADHD. Pediatrics. 2022;149(Suppl 4):e2020049437V. Doi:10.1542/peds.2020-049437V
Shattuck P, Shea L. Improving Care and Service Delivery for Autistic Youths Transitioning to Adulthood. Pediatrics. 2022;149(Suppl 4):e2020049437I. Doi:10.1542/peds.2020-049437I
Song W, Salzer MS, Nonnemacher SL, Miller KK, Shea LL. Living arrangements and community participation among autistic adults: Exploring the possible influences of living alone or with others. Res Dev Disabil. 2022;124:104213. doi:10.1016/j.ridd.2022.104213
Song W, Salzer MS, Nonnemacher SL, Shea L. Lifespan service receipt and unmet needs among individuals on the autism spectrum. Adm Policy Ment Health. 2022;49(4):694-705. doi:10.1007/s10488-022-01192-4
Steinberg H, Garfield T, Becker A, and Shea L.What Category Best Fits: Understanding Transgender Identity in a Survey of Autistic Individuals. Autism in Adulthood. ahead of print http://doi.org/10.1089/aut.2021.0079
Fernandes P, Haley M, Eagan K, Shattuck PT, Kuo AA. Health Needs and College Readiness in Autistic Students: The Freshman Survey Results. J Autism Dev Disord. 2021;51(10):3506-3513. doi:10.1007/s10803-020-04814-8
Gray S, Kirby AV, Graham Holmes L. Autistic narratives of sensory features, sexuality, and relationships. Autism Adulthood. Published online February 9, 2021. doi:10.1089/aut.2020.0049
Kirby AV, McDonald KE, Cusack J, et al. An expert discussion on knowledge translation in autism in adulthood research. Autism Adulthood. 2021;3(1):11-17. doi:10.1089/aut.2020.29017.avk
Roux AM, Rast JE, Garfield T, Shattuck P, Shea LL. National autism indicators report: family perspectives on services and supports. Drexel University Life Course Outcomes. May 2021. Accessed August 29, 2021. https://drexel.edu/autismoutcomes/publications-and-reports/publications/nair-family-perspectives-on-services-and-supports/
Song W, Salzer MS, Nonnemacher SL, Shea LL. Community participation patterns among autistic adults and associated characteristics: A latent class analysis. Res Autism Spectr Disord. 2021;89:101884. doi: 10.1016/j.rasd.2021.101884
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.
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
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.