OTQualitativeJournal of autism and developmental disorders2025

Navigating the Transition to Adulthood: Insights from Caregivers of Autistic Individuals.

Samara M Wolpe, Amanda R Johnson, Sunny Kim

PMID 38141096

WHAT IT FOUND

Nine of ten caregivers of autistic adults said services stopped after high school.

They described hunting for adult supports, confusing Regional Center information, long waits, and programs that ignored their child's interests, leaving families exhausted.

Key findings

01Nine of ten caregivers reported that services stopped after their child graduated high school.

02Caregivers said adult services were hard to find, hard to access, and often not matched to the person's interests or support needs.

03Other parents, not agencies, were described as the most trusted source of practical transition information.

STILL TO COME

How it was doneWhat they foundWhat it means for OTs

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What it does not show

Only 10 caregivers were interviewed, so their experiences cannot represent all families of autistic adults. Participants were recruited by convenience and personal networks, and were mostly white, all women, and living in California, so the findings are tied to that sample and state's service system. The autistic adults themselves were not interviewed, so the paper reports caregiver views rather than the adults' own experiences.

The easy way to misread this

Do not read these themes as evidence that a specific transition program works or fails. They describe what caregivers said about services, and the autistic adults themselves were not interviewed.

Read it on PubMed →