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Awareness
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Shows like The Good Doctor, Atypical, and Love on the Spectrum depict young autistic people transitioning to adulthood—finishing high school, falling in love, and navigating careers. The reality for autistic youths can be just as dramatic as the Hollywood version, but without a team of writers to ensure a happy ending. The truth is that many autistic young people slip through the cracks after leaving high school. It’s estimated that over 25% end up completely disconnected—not working, in programs that support work, or in school (Roux et al., 2015). This disconnect happens for several reasons. One reason is the different ways child and adult services work. Autistic youth who qualify for special education are entitled to a variety of services to support their education, which are coordinated through schools, but the adult service system does not work like that. In adulthood, there are a variety of different services, each one with different eligibility requirements, that all must be independently coordinated (Shogren & Wittenberg, 2020). Figuring all that out is a daunting task. Another challenge is that many of the services that are available are not designed for autistic people, who themselves are a very heterogeneous group.
Despite these challenges, many things can help the transition process go more smoothly. One is connections with other autistic young people and adults—many autistic young people find self-acceptance and learn how to advocate through their connections with other autistic people (Lee et al., 2022). Another is starting the planning process early. In Delaware, transition planning is legally supposed to happen by age 14th or 8th grade for students receiving special education. Family engagement and expectations have been found to improve outcomes for autistic youth (Kirby et al., 2020). One important skill that should start early and that families and advocates can support with is self-determination. Self-determination is a combination of competence, autonomy, and interconnectedness that we all need to be successful in adulthood but many young people with disabilities experience barriers in one or all of these domains (Cheak-Zamora et al., 2020). There are many excellent local resources (listed below) that can provide support for college, work, relationships, and advocacy. Hopefully, as more light is shed on the challenges autistic youth face and supports are developed to meet those challenges, more and more autistic young people can have their Hollywood happy endings.
Notes: Autism is a neurodevelopmental disability that children are born with and lasts throughout their lifetime. It affects social communication, and autistic people have idiosyncratic patterns of behavior. The Autistic Self Advocacy Network is a great resource to learn about autism. I use identity-first language, which is preferred by many autistic advocates. Emily Ladau’s book Demystifying Disability, is a great resource for learning more about disability language and allyship.
Written by: Dr. Sarah Curtiss
Assistant professor specializing in Special Education and Disability Studies at UD
Learn more about her research on her website: https://autismincontext.org/
References
Cheak-Zamora, N. C., Maurer-Batjer, A., Malow, B. A., & Coleman, A. (2020). Self-determination in young adults with autism spectrum disorder. Autism, 24(3), 605-616. https://doi.org/10.1177/136236131987732
Kirby, A. V., Feldman, K. J. C., Hoffman, J. M., Diener, M. L., & Himle, M. B. (2020). Transition preparation activities and expectations for the transition to adulthood among parents of autistic youth. Research in Autism Spectrum Disorders, 78, 101640. https://doi.org/10.1016/j.rasd.2020.101640
Lee, G.K., Curtiss, S.L., Kuo, H.J., Chun, J., Lee, H.K., & Ami-Narh, D. (2022). The role of acceptance in the transition to adulthood: A multi-informant comparison among practitioner, parents, and transition-age individuals on the autism spectrum. Journal of Autism and Developmental Disorders, 52, 1444–1457 https://doi.org/10.1007/s10803-021-05037-1
Roux, A. M., Shattuck, P. T., Rast, J. E., Rava, J. A., & Anderson, K. A. (2015). National autism indicators report: Transition into young adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A. J. Drexel Autism Institute, Drexel University.
Shogren, K. A., & Wittenburg, D. (2020). Improving outcomes of transition-age youth with disabilities: A life course perspective. Career Development and Transition for Exceptional Individuals, 43(1), 18–28. https://doi.org/10.1177/2165143419887853
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