Flourishing: Caregiving Autistic Adults Podcast
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
Flourishing: Caregiving Autistic Adults Podcast
Episode Three: Early Pioneers, Vocational Rehabilitation, and Skill Development
Use Left/Right to seek, Home/End to jump to start or end. Hold shift to jump forward or backward.
Episode 3 will cover a deeper dive into autism caregiver pioneers who advocated for vocational rehabilitation supports over 100 years ago. The episode will examine some first responder programs, and highlight the importance of the work of Dr. Sukariva, Dr. Kanner, and others.
This episode, we will review Mass Ability Program and describe how to access this support.
Historical Figures & Autism History
Anderson, K. A., Roux, A. M., Shattuck, P. T., Rast, J. E., & Rava, J. A. (2024). Pre-employment transition services and vocational rehabilitation for autistic youth. Drexel University, A.J. Drexel Autism Institute.
Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2(3), 217–250.
Pozzi, M., Carnovale, C., Mazhar, F., Gentili, M., Radice, S., & Clementi, E. (2024). Grunya Sukhareva: A forgotten pioneer in autism research. European Psychiatry, 67(1), Article e12. https://doi.org/10.1192/j.eurpsy.2024.3
Sher, D., & Gibson, J. (2021). Pioneering, prodigious and perspicacious: Grunya Efimovna Sukhareva's life and contribution to conceptualising autism and childhood psychopathology. European Psychiatry, 64(1), Article e16. https://doi.org/10.1192/j.eurpsy.2021.2214
Sheffer, E. (2018). Asperger's children: The origins of autism in Nazi Germany. W. W. Norton & Company.
Maternal Caregivers & Pioneer Figures
Marsack-Topolewski, C. N., & Perry, T. E. (2018). Parenting adult children with autism: Caregiver perspectives and service needs. Intellectual and Developmental Disabilities, 56(5), 318–331. https://doi.org/10.1352/1934-9556-56.5.318
Park, C. C. (1967). The siege: The first eight years of an autistic child. Little, Brown.
Park, C. C. (2001). Exiting nirvana: A daughter's life with autism. Little, Brown.
Vicedo, M. (2021). Intelligent love: The story of Clara Park, her autistic daughter, and the myth of the refrigerator mother. Beacon Press.
Vocational Rehabilitation & Employment
Davies, J., Romualdez, A., Pellicano, E., & Remington, A. (2024). Career progression for autistic people: A scoping review. Autism, 28(11), 2690–2706. https://doi.org/10.1177/13623613241236110
Ishler, K. J., Berg, K. A., Olgac, T., Obeid, R., & Biegel, D. E. (2023). Barriers to service and unmet need among autistic adolescents and young adults. Autism, 26(2), 375–387. https://doi.org/10.1177/13623613211035617
Roux, A. M., Shattuck, P. T., Rast, J. E., Rava, J. A., & Anderson, K. A. (2015). National autism indicators report: Transition into young adulthood. Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University.
Taylor, J. L., & 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.
Healthcare, Ableism & Equity
Flanagan, T., Carter, E. W., & Hall, L. J. (2024). Racially and ethnically diverse families navigating autism services: Intersectional barriers and culturally responsive approaches. Journal of Autism and Developmental Disorders, 54(3), 980–995. https://doi.org/10.1007/s10803-023-05940-7
Pellicano, E., Dinsmore, A., & Charman, T. (2022). Views on researcher–community engagement in autism research in the United Kingdom: A m
