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Stakeholder Perspectives on Needs of Young Adults with Autism in Health Care Transition

Fathima Wakeel*, Sweety Jain, Victoria Connors, Alyssa Blasko, Jessica Berman, Kristi Morin

Background: As adequate training of healthcare professionals is one of the most critical contributors to the successful Health Care Transition (HCT) of Young Adults with Autism (YAWA), it is crucial to examine the perceptions of key stakeholders involved with the transition process.

Objective: This study explores the perspectives of parents/caregivers of YAWAs, clinicians and allied health professionals regarding the salient needs of YAWAs during HCT.

Materials and methods: Data are from 151 respondents, comprising 50 caregivers, 43 clinicians and 48 allied health professionals (Social Workers (SWs), Physical Therapists (PTs) and Occupational Therapists (OTs)). Respondents completed an online survey regarding their experiences caring for YAWAs and the specific needs that arise during HCT.

Results: Over half of parents/caregivers reported that their YAWA did not receive any transition services. Other transition-related challenges that parents/caregivers reported were providers’ in experience with YAWAs and their YAWA’s difficulty transitioning outside the medical environment. Clinicians with 10+ years of experience reported the highest comfort levels working with YAWAs. Clinicians cited employment and independent living as the top challenges for YAWAs. Among allied health professionals, comfort levels were significantly associated with frequency of interaction with YAWAs. SWs indicated that YAWAs’ salient needs during transition to adulthood include housing/independent living skills and productive involvement (e.g., employment, volunteering). PTs and OTs reported experiencing difficulties with communication, engagement and compliance when providing care for YAWAs.

Conclusion: Findings indicate that families of YAWAs, clinicians and allied health professionals would benefit from evidence-based guidance in the HCT process that incorporates existing literature and interdisciplinary perspectives.