Pediatric provider's perspectives on the transition to adult health care for youth with autism spectrum disorder: current strategies and promising new directions.
Only one in five autistic teens gets a health-care hand-off, but a one-page summary and a short family class can fix it.
01Research in Context
What this study did
Boudreau et al. (2015) asked pediatric doctors how they move autistic teens to adult care. They ran small group chats and one-on-one calls. Doctors shared what they do now and what fails.
The team coded the talks and found five common plans. They also heard what families still lack.
What they found
Only one in five youth with ASD gets any formal transition plan. Most doctors use home-grown steps like handing parents a phone list or sending one letter to the new clinic.
Doctors said they need quick tools: a one-page medical summary, a short script to teach families, and a short class for themselves.
How this fits with other research
Hamama et al. (2021) backs this up. Their big map of 23 studies shows the same gaps. When clinics add data sheets and quick staff training, visits run smoother.
Nicolaidis et al. (2015) and Mason et al. (2021) flip the view. Autistic adults say the same fixes matter: clear papers, extra time, and one trusted doctor. The needs match even though the voices differ.
Marsh et al. (2017) seems to clash. They show that young autistic kids gain school skills with good plans. Yet A et al. shows those gains fade by high school. The gap is age, not method. Early wins do not auto-repeat later.
Why it matters
You can close the 21 % gap today. Add a one-page health summary to your discharge packet. Offer a 30-minute family night where you walk through the adult intake form. These two steps cost little and lift you above usual care.
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02At a glance
03Original abstract
Few youth with autism spectrum disorder (ASD) nationally report receiving services to help them transition from the pediatric health care system to the adult health care system. For example, only one-fifth (21.1%) of youth with ASD receive any transition planning services. To better understand why the transition from pediatric to adult health care is so difficult, we interviewed pediatric health care providers with extensive experience serving youth with ASD. We gathered information about the strategies and interventions they use to transition their patients with ASD to an adult provider. Five interventions or strategies are currently being used. These include providing families with written medical summaries to give to adult providers, compiling lists of available adult providers or community resources, coordinating care and communication between individual pediatric and adult providers, making transition-specific appointments, and using checklists to track transition progress. Other interventions or strategies were identified as needed but not currently in practice, and these focused on education and training. For example, informational workshops were suggested to train families and youth about transition. Training adult providers and medical students was also seen as important. Several respondents additionally identified the need for a transition center where all services could be coordinated in one place. With large numbers of youth with ASD becoming young adults, it seems that pediatric practices might want to consider some of the activities described here. Some of these activities, such as family educational seminars and written medical summaries, are likely relatively easy for a practice to implement.
Autism : the international journal of research and practice, 2015 · doi:10.1177/1362361313518125