Flourishing: Caregiving Autistic Adults Podcast

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Claim

This podcast addresses the critical knowledge gap for caregivers of autistic adults as they navigate the service cliff (Ishler et al., 2021), which is defined as the abrupt end of federally mandated educational services at the age of 22. The transition to adulthood lacks reliable, well-structured care coordination and support services to help caregivers identify and access the full range of available adult support services. Often, these services are hidden in grey literature, where you need to know the service name to explore the resource. The service cliff directly impacts caregivers as well as the autistic adult, as they experience discontinuation of a structured schedule, social isolation, and a disconnect from typical knowledge sharing that occurs at special educational support meetings. The research demonstrates a significant knowledge gap among caregivers of autistic adults, as well as medical providers, and this podcast proposes to address the knowledge gap faced by caregivers navigating the system (Ishler et al., 2021; Laxman et al., 2019).

This podcast will offer well-researched information and guidance on navigating the adult service system, including how to apply for Medicaid waivers, vocational rehabilitation, SSI/SSDI, and how to access healthcare within the adult medical and mental health landscape (Gowen et al., 2020; Shattuck et al., 2020). Throughout the podcast, we will hear from caregivers' narratives, including intergenerational and multigenerational caregivers, to understand the unique intersectional experiences of this patient population. We will take the listening on a caregiver journey of discovery of the history of autism, and explore the beginning stages of leaving the structured supports provided by the IDEA, and the experience of entering into a world where mostly maternal caregivers become the case manager, advocate, and service provider (Dembosky et al., 2023; Wolpe et al., 2023).

Dembosky, J. W., Heckert, D., Boser, S., & Migyanka, J. M. (2023). Shouldering the burden: Intensive mothering and autism. Family Relations, 73(2), 807-825.

Ishler, K. J., Biegel, D. E., Wang, F., Olgac, T., Lytle, S., Miner, S., Edguer, M., & Kaplan, R. (2021). Service use among transitional-age youth with autism spectrum disorder. Journal of Autism and Developmental Disorders, 52(3), 1051-1065. https://doi.org/10.1007/s10803-021-04999-6

Gowen, E., Taylor R., Bleazard, T., Greenstein, A., Baimbridge, P., & Poole, D. (2020). Guidelines for conducting research studies with the autism community. Autism, 27(6), 1676-1689. https://doi.org/10.1177/13623613221143590

Shattuck, P. T., Roux, A. M., Rast, J. E., Anderson, K., Hassrick, E., & Kuo, A. (2020). Services for adults with autism spectrum disorder: A systems perspective. Current Psychiatry Reports, 22(3). https://doi.org/10.1007/s11920-020-1136-7

Wolpe, S. M., Johnson, A. R., & Kim, S. (2023). Navigating the transition to adulthood: Insights from caregivers of autistic individuals. Journal of Autism and Developmental Disorders. 55(1), 166-180. https://doi.org/10..1002/aur.2696