Opportunities for Inclusion and Engagement in the Transition of Autistic Youth from Pediatric to Adult Healthcare: A Qualitative Study

Abstract

Transitioning autistic youth from pediatric to adult healthcare requires coordination of multiple stakeholders, including youth, caregivers, and pediatric and adult care providers, whose interests at times overlap but often differ. To understand barriers and facilitators to inclusive transition experiences, we conducted thematic analysis of interviews with 39 stakeholders from the same large, integrated healthcare system. We identified three major themes: (1) Navigating the healthcare transition without guidance, (2) Health consequences of a passive healthcare transition, and (3) Strategies for inclusion and continuous engagement. Facilitators included gradual transition planning, a warm handoff between providers, and support of shared healthcare decision-making. Providers also sought clinical tools and logistical supports such as care coordinators and longer transition-specific visit types to enhance patient-centered care.