Young Adults on the Autism Spectrum: The Struggle for Appropriate Services
In the United States, young adults with an autism spectrum disorder (ASD) lose federally mandated supports upon leaving high school. To arrange adult services, families must prove their young adult’s eligibility and find competent service providers. National-level statistics regarding receipt of appropriate adult services are discouraging, but little is known about families’ lived experience with regard to services. Therefore, qualitative interviews focused on the search for and satisfaction with adult services were conducted with parents of young adults with ASD, then analyzed using the constant comparative method. Emergent themes included Bureaucracy and Fighting for Access, Staffing Issues, Program Suitability, and “Doing It Yourself.” The need to improve service access and delivery is discussed, as are issues facing specific ASD subgroups.
KeywordsAutism spectrum disorders Grounded theory Qualitative research Services Young adult outcomes
We would like to express our gratitude to the families who made this research possible by sharing their experiences with us. We would also like to thank Towson University, the A. J. Drexel Autism Institute, and the Organization for Autism Research (OAR) for their generous support of this project. In addition, we would like to thank Alexis Lupfer for her contribution to data analysis during an earlier phase of the project, and Cheryl Cohen and Dr. Collette Sosnowy for their insightful comments on the final draft of this paper.
CA conceptualized the study; conducted all interviews; performed coding and qualitative data analysis; and drafted the final manuscript. CB performed coding and qualitative data analysis and contributed to the manuscript. Both authors read and approved the final manuscript.
This study was funded by the A. J. Drexel Autism Institute (#U0022482) and the Organization for Autism Research (#5060002).
Compliance with Ethical Standards
Conflict of interest
Connie Anderson declares that she has no conflict of interest; Catherine Butt declares that she has no conflict of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. This article does not contain any studies with animals performed by any of the authors.
Informed consent was obtained from all individual participants included in the study.
- American Association on Intellectual and Developmental Disabilities and The National Alliance of Direct Support Professionals. (2016). Direct support professionals (DSP) workforce. Retrieved from http://aaidd.org/news-policy/policy/position-statements/direct-support-professionals-(dsp)-workforce#.WdeIu1tSwdU.
- American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th edn.). Washington DC: American Psychiatric Publishing.Google Scholar
- Americans with Disabilities Act, 42 U.S.C. §§ 12101–12213 (2012).Google Scholar
- Anderson, K. A., Shattuck, P. T., Cooper, B. P., Roux, A. M., & Wagner, M. (2014). Prevalence and correlates of postsecondary residential status among young adults with an autism spectrum disorder. Autism, 18(5), 562–570.Google Scholar
- Blustein, D. L. (2008). The role of work in psychological health and well-being: A conceptual, historical, and public policy perspective. American Psychologist, 63(4), 228–240.Google Scholar
- Boeije, H. (2002). A purposeful approach to the constant comparative method in the analysis of qualitative interviews. Quality & Quantity, 36(4), 391–409.Google Scholar
- Bogenschutz, M. D., Hewitt, A., Nord, D., & Hepperlen, R. (2014). Direct support workforce supporting individuals with IDD: Current wages, benefits, and stability. Intellectual and Developmental Disabilities, 52(5), 317–329.Google Scholar
- Bölte, S., Mahdi, S., de Vries, P. J., Granlund, M., Robison, J. E., Shulman, C.,… Selb, M. (2018). The Gestalt of functioning in autism spectrum disorder: Results of the international conference to develop final consensus International Classification of Functioning, Disability, and Health core sets. Autism. https://doi.org/10.1177/1362361318755522.Google Scholar
- Corbin, J., & Strauss, A. (2014). Basics of qualitative research: Techniques and procedures for developing grounded theory (4th edn.). Thousand Oaks: Sage Publications.Google Scholar
- Croen, L. A., Zerbo, O., Qian, Y., Massolo, M. L., Rich, S., Sidney, S., & Kripke, C. (2015). The health status of adults on the autism spectrum. Autism, 19(7), 814–823.Google Scholar
- Gerhardt, P. F., & Lainer, I. (2011). Addressing the needs of adolescents and adults with autism: A crisis on the horizon. Journal of Contemporary Psychotherapy, 41(1), 37–45.Google Scholar
- Glaser, B. G. (1965). The constant comparative method of qualitative analysis. Social Problems, 12(4), 436–445.Google Scholar
- Gotham, K., Marvin, A. R., Taylor, J. L., Warren, Z., Anderson, C. M., Law, P. A., Law, J. K., & Lipkin, P. H. (2015). Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data. Autism, 19(7), 794–804.Google Scholar
- Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24, 105–112.Google Scholar
- Grzadzinski, R., Huerta, M., & Lord, C. (2013). DSM-5 and autism spectrum disorders (ASDs): An opportunity for identifying ASD subtypes. Molecular Autism, 4(1), 1–6.Google Scholar
- Hewitt, A. S., Stancliffe, R. J., Hall-Lande, J., Nord, D., Pettingell, S. L., Hamre, K., & Hallas-Muchow, L. (2017). Characteristics of adults with autism spectrum disorder who use residential services and supports through adult developmental disability services in the United States. Research in Autism Spectrum Disorders, 34, 1–9.Google Scholar
- Human Services Research Institute (HSRI) and National Association of State Directors of Developmental Disabilities Services (NASDDDS). (2018). National Core Indicators. Retrieved from https://www.nationalcoreindicators.org/.
- Individuals with Disabilities Education Act, 20 U.S.C. §§ 1400–1419 (2012).Google Scholar
- Insel, T. (2013). Blog post: Transforming diagnosis. Retrieved from https://www.nimh.nih.gov/about/directors/thomas-insel/blog/2013/transforming-diagnosis.shtml.
- Interagency Autism Coordinating Committee (IACC). (2017). 2016–2017 Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder. Retrieved from https://iacc.hhs.gov/publications/strategic-plan/2017/.
- Jackett, J. M. (2010). Transition and beyond for individuals with autism spectrum disorders (ASDs): A New Jersey case study of the adult service section, its inherent shortcomings, and hope for the future. Seton Law Review, 40, 1733–1774.Google Scholar
- Kenny, L., Hattersley, C., Molins, B., Buckely, C., Povey, C., & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, 20(4), 442–462.Google Scholar
- Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Newbury Park: Sage Publications.Google Scholar
- Masi, A., DeMayo, M. M., Glozier, N., & Guastella, A. J. (2017). An overview of autism spectrum disorder, heterogeneity, and treatment options. Neuroscience Bulletin, 33(2), 183–193.Google Scholar
- National Center for Special Education Research. (2018). National Longitudinal Transition Study-2. Retrieved from https://nlts2.sri.com/index.html.
- Parr, J. (2016). How can we learn more about the lives of adults on the autism spectrum from across the age range, and their relatives? In S. D. Wright (Ed.), Autism spectrum disorder in mid and later life (pp. 288–296). London: Jessica Kingsley Publishers.Google Scholar
- Robertson, S. M. (2010). Neurodiversity, quality of life, and autistic adults: Shifting research and professional focuses onto real-life challenges. Disability Studies Quarterly, 30(1), 1–17.Google Scholar
- Roux, A. M., Shattuck, P. T., Cooper, B. P., Anderson, K. A., Wagner, M., & Narendorf, S. C. (2013). Postsecondary employment experiences among young adults with an autism spectrum disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 52(9), 931–939.Google Scholar
- Section 504 of the Rehabilitation Act, 29 U.S.C. §§ 705(20), 794 (2012).Google Scholar
- Shattuck, P. T., Roux, A. M., Hudson, L. E., Taylor, J. L., Maenner, M. J., & Trani, J. F. (2012). Services for adults with an autism spectrum disorder. Canadian Journal of Psychiatry, 57(5), 284–291.Google Scholar
- Shattuck, P. T., Wagner, M., Narendorf, S., Sterzing, P., & Hensley, M. (2011). Post-high school service use among young adults with an autism spectrum disorder. Archives of Pediatric and Adolescent Medicine, 165(2), 141–146.Google Scholar
- Taylor, J. T., Hodapp, R. M., Burke, M. M., Waitz-Kudla, S. N., & Rabideau, C. (2017). Training parents of youth with autism spectrum disorder to advocate for adult disability services: Results from a pilot randomized controlled trial. Journal of Autism and Developmental Disorders, 47(3), 846–857.Google Scholar
- Taylor, J. T., & Seltzer, M. M. (2010). Changes to the autism behavioral phenotype during the transition to adulthood. Journal of Autism and Developmental Disorders, 40(12), 1431–1446.Google Scholar
- Taylor, J. T., & Seltzer, M. M. (2011). Employment and post-secondary educational activities for young adults with autism spectrum disorders during the transition to adulthood. Journal of Autism and Developmental Disorders, 41(5), 566–574.Google Scholar
- The Lewin Group. (2014). Phase III-B: Road map of core competencies for the direct service workforce project validation. Retrieved from https://www.medicaid.gov/medicaid/ltss/downloads/workforce/dsw-core-competencies-phase-iii-december-2014.pdf.