A Longitudinal Mixed-Methods Characterization of Family Support from Adolescence to Young Adulthood in Autism and Other Developmental Disabilities.
Hillary K Schiltz, Elaine Clarke, Nicole Rosen and 4 others
PMID 37668851WHAT IT FOUND
As autistic youth reach adulthood, family support remains the most helpful and valued resource, while formal professional support declines significantly.
Caregivers shift from needing practical help to valuing emotional partnership and dependability. Clinicians should prioritize assessing family networks, not just clinical services.
Key findings
01The helpfulness and use of formal support declined significantly from adolescence to young adulthood, while the helpfulness of informal family support remained stable.
02Caregivers' partners were the most frequently endorsed source of highly valued support, followed by parents and extended family, with friends and formal professionals valued less often.
03Qualitative analysis showed a shift in valued support characteristics from instrumental help (e.g., respite, planning) to emotional support (e.g., partnership, listening) as children aged.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The sample was predominantly White and highly educated compared to the broader longitudinal cohort, potentially limiting generalizability to families from different racial or socioeconomic backgrounds. Attrition affected the number of Black caregivers and those with less than a 4-year college degree in the final analyses. The study included very few fathers, constraining the ability to examine gender differences in caregiver support needs. Participants were recruited in the early 1990s, so the service availability and diagnostic landscape differed from current practice.
Declared interests
Funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development and the National Institute of Mental Health and Neurosciences. No other conflicts declared.
The easy way to misread this
Do not interpret the decline in formal support as a sign that clinical services become irrelevant. The data show a 'service cliff' where access to school-based and professional supports drops, forcing families to rely on informal networks. This highlights a gap in service provision for adults, not a lack of need.