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).
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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. DOI:10.3233/JVR-191046 November 2019
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. November 2019 J Intellect Dev Disabil
Anderson KA, Hemmeter J, Rast JE, Roux AM, Shattuck PT. Trends in Supplemental Security Income Payments to Adults. Psychiatry Online. April 2020. DOI:10.1176/appi.ps.201900265 April 2020
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Anderson KA, Hemmeter J, Rast JE, Roux AM, Shattuck PT. Trends in Supplemental Security Income Payments to adults with autism. DOI:10.1176/appi.ps.201900265 April 2020
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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/ May 2021
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 DOI:10.1016/j.rasd.2021.101884 November 2021
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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 DOI:10.1542/peds.2020-049437R April 2022 35363287
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 DOI:10.1542/peds.2020-049437S April 2022 35363289
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 DOI:10.1542/peds.2020-049437V April 2022 35363295
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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 DOI:10.1002/aur.2644 January 2022 34854249
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 DOI:10.7759/cureus.21520 January 2022 35223296
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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 DOI:10.5014/ajot.2022.049202 January 2022 35030249
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 DOI:10.1007/s10488-022-01192-4 July 2022 35320442
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 DOI:10.1016/j.ridd.2022.104213 May 2022 35290949
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 DOI:10.1089/aut.2021.0079 September 2022