“Don't Promise Something You can't Deliver:” Caregivers' Advice for Improving Services to Adolescents and Young Adults with Autism

KA Berg, KJ Ishler, S Lytle, R Kaplan… - Autism Research …, 2023 - Wiley Online Library
KA Berg, KJ Ishler, S Lytle, R Kaplan, F Wang, T Olgac, S Miner, MN Edguer, DE Biegel
Autism Research and Treatment, 2023Wiley Online Library
Approximately 50,000 youths with autism spectrum disorders (ASD) exit US high schools
yearly to enter adult systems of care, many of whom remain dependent on family for day‐to‐
day care and service system navigation. As part of a larger study, 174 family caregivers for
adolescents or young adults with ASD were asked what advice they would give service
providers about how to improve services for youth with ASD. Reflexive thematic analysis
identified a framework of five directives:(1) provide a roadmap to services;(2) improve …
Approximately 50,000 youths with autism spectrum disorders (ASD) exit U.S. high schools yearly to enter adult systems of care, many of whom remain dependent on family for day‐to‐day care and service system navigation. As part of a larger study, 174 family caregivers for adolescents or young adults with ASD were asked what advice they would give service providers about how to improve services for youth with ASD. Reflexive thematic analysis identified a framework of five directives: (1) provide a roadmap to services; (2) improve service access; (3) fill gaps to address unmet needs; (4) educate themselves, their families, and society about autism; and (5) operate from a relationship‐building paradigm with families. Education, health, and social service providers, as well as policymakers, can use these directives to better assist youth with ASD and their families in the transition to adulthood.
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