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

Researchers talked to 39 people (young autistic people, parents, and doctors) about moving from children's to adult healthcare. They found three main issues: no clear guidance during the move, health problems when transitions are handled poorly, and helpful strategies for better transitions. Good transitions include gradual planning, doctors working together to pass on care, and involving families in decisions. Doctors also need better tools and more time for transition appointments.

This qualitative study examined healthcare transition experiences for autistic youth by interviewing 39 stakeholders (youth, caregivers, and healthcare providers) within a single integrated healthcare system. The research identified three key themes: lack of guidance during transitions, negative health consequences from passive transition processes, and strategies for improving inclusion and engagement. Key facilitators included gradual transition planning, warm handoffs between pediatric and adult providers, and support for shared healthcare decision-making. Providers identified needs for clinical tools, care coordinators, and extended transition-specific appointments to enhance patient-centered care during this critical period.

Healthcare systems should implement gradual transition planning with warm handoffs between pediatric and adult providers. Care coordination support and extended appointment times may improve transition experiences. Shared decision-making approaches should be integrated into transition processes to enhance patient and family engagement.

Single healthcare system limits generalizability. Sample size and composition not fully specified. Qualitative design provides insights but cannot establish causal relationships. No long-term follow-up of transition outcomes reported.

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.