Navigating the Transition to Adulthood: Insights from Caregivers of Autistic Individuals.
Parents say adult services vanish after school; start transition plans early and budget for caregiver support.
01Research in Context
What this study did
Whaling et al. (2025) talked to parents of autistic adults. They asked what it feels like when school ends and adult life starts.
The team used open interviews. Parents shared real stories about finding services, paying bills, and planning futures.
What they found
Parents say the cliff is real. Services drop off, costs rise, and plans must be built one person at a time.
Caregivers feel lost in a maze. They juggle money, paperwork, and worry while trying to create a meaningful day for their adult child.
How this fits with other research
Fedoroff et al. (2016) counted the drop. They showed service use falls sharply after high-school exit, especially for youth without intellectual disability. M et al. give the parent voice to those same numbers.
Hedley et al. (2018) asked autistic workers what helps on the job. They named clear instructions, coworker allies, and quiet spaces. M et al. echo the need for tailored supports, but from the caregiver side.
Sosnowy et al. (2018) and M et al. look like duplicates: both are qualitative, both ask what success means. The older paper says success is personal; the new one says parents still have no map to reach it.
Why it matters
You already write transition plans. Use these findings to start earlier, loop in adult agencies before graduation, and add a caregiver-support goal to the IEP. One extra page can save families years of stress and debt.
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02At a glance
03Original abstract
With many teens having to transition from a mainly educational system of support to a set of health and social service systems (Shattuck et al. in Autism Res Treat https://doi.org/10.1155/2014/924182 , 2017), there is a critical need to advance research and support services in the area of autism and transition to aid autistic* individuals and their families. This study aims to learn more about the experiences of caregivers of autistic young adults, their experiences navigating the transition process post-graduation, and what realistic steps could be undertaken by high schools, vocational schools, colleges, Regional Centers, and places of employment to ease this transition. Ten semi-structured interviews were conducted with caregivers of autistic young adults over the age of 18 focused on their experiences helping their children navigate the transition to adulthood. Using an iterative and inductive coding approach, three overarching themes were uncovered with twelve subthemes. The three major themes recurring in caregiver interviews were their experiences with navigating service receipt, exploring the landscape of opportunities available for their children, and the parent experiences specific to their role in their child's transition into adulthood. Findings from this study provide a chance for stakeholders to learn from the lived experiences of caregivers navigating the frustration and confusion pertaining to transition for their autistic adult child due to the highly prohibitive access to service receipt, experiencing significant financial burdens, finding a niche for their children that fits their needs, desires, and talents, and managing their well-being.
Journal of autism and developmental disorders, 2025 · doi:10.1525/maq.1990.4.4.02a00020