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Journal of Autism and Developmental Disorders

Gepubliceerd in:

03-07-2018 | Original Paper

Young Adults on the Autism Spectrum: The Struggle for Appropriate Services

Auteurs: Connie Anderson, Catherine Butt

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 11/2018

Abstract

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.

vorige artikel Enhanced Sensitivity to Angry Voices in People with Features of the Broader Autism Phenotype

volgende artikel Training Physical Therapists in Early ASD Screening

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.CrossRef

Americans with Disabilities Act, 42 U.S.C. §§ 12101–12213 (2012).

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.PubMed

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.PubMed

Boeije, H. (2002). A purposeful approach to the constant comparative method in the analysis of qualitative interviews. Quality & Quantity, 36(4), 391–409.

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.PubMed

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.PubMedCrossRefPubMedCentral

Corbin, J., & Strauss, A. (2014). Basics of qualitative research: Techniques and procedures for developing grounded theory (4th edn.). Thousand Oaks: Sage Publications.

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.PubMed

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.

Glaser, B. G. (1965). The constant comparative method of qualitative analysis. Social Problems, 12(4), 436–445.

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.PubMedPubMedCentral

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.PubMed

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.

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.

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).

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.

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.PubMed

Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Newbury Park: Sage Publications.

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.PubMedPubMedCentral

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.

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.

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.

Section 504 of the Rehabilitation Act, 29 U.S.C. §§ 705(20), 794 (2012).

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.PubMed

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.

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.PubMedPubMedCentral

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.PubMedPubMedCentral

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.PubMedPubMedCentral

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.

Titel: Young Adults on the Autism Spectrum: The Struggle for Appropriate Services
Auteurs: Connie Anderson
Catherine Butt
Publicatiedatum: 03-07-2018
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 11/2018
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-018-3673-z

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