Improving Health Care Services for Autistic Young Adults: Development and Use of a Self‐Reported Health Care Transition Readiness Assessment

BACKGROUND: Autistic young adults' preparation for and experiences of transitioning to adult healthcare services is understudied. This transition period is important for Autistic young adults as many have chronic physical and mental health conditions that require regular healthcare utilization. AIMS: This study aimed to examine the experiences of autistic young adults as they transition into the adult healthcare system. METHODS AND PROCEDURES: Participants were recruited through social media, word of mouth and advertisements in autism specialty clinics. Autistic young adults (n = 14) completed surveys and individual interviews, via Zoom, about health-related transition skills and experiences. Three researchers used thematic analysis to Bertucci OUTCOMES AND RESULTS: Participants rated all Health-related independence topics as important to the transition process, with knowledge about physical and mental conditions and safety as most important. Qualitative findings centred around what supports helped and hindered autistic young adults from becoming more independent. They used electronic reminders, observation, or training to learn living skills. Barriers included reliance on caregivers and a sense of being unable to achieve independence. CONCLUSIONS AND IMPLICATIONS: Autistic young adults reported having some strategies but facing many challenges in achieving independence, related to healthcare needs. Participants described barriers related to making medical appointments, taking medications on their own and talking about their ASD and other medical conditions. Interventions and assessments should incorporate their experiences and needs. KEY POINTS: Autistic young adult participants described the need for memory aids and reminders as an important part of being an adult. Many participants reported learning independent-related skills by observing or mirroring others, asking a support person for guidance, or searching out information often on the internet. Participants discussed feeling unable to be independent. Many participants were not sure what was holding them back, or they felt like they didn't have the communication skills needed to do independent tasks themselves. WHAT THIS PAPER ADDS: What is already known on this subject Autistic experiences of the move from paediatric to adult-centred care is understudied. Most research in this area is based on general surveys or parent reports. What this study adds to the existing knowledge By giving Autistic Young Adults a voice in describing their transition experiences and needs, this paper increases the knowledge base in this understudied area. Autistic young adults described the need for memory aids and reminders. Participants discussed feeling unable to be independent. Many participants were not sure what was holding them back, or they felt like they didn't have the communication skills needed to do independent tasks themselves. What are the potential or actual clinical implications of this study? Clinicians should build additional tools and supports that correspond with Autistic young adults' strengths and ways of learning, like electronic tools, discrete trial training and including caregivers in training when needed. Clinicians should purposefully utilize caregivers in interventions with decreasing reliance on their assistance and involvement over time. Strengthening Autistic young adults' belief that they can be more independent may be as important as teaching independence-related skills.