Opportunities for Inclusion and Engagement in the Transition of Autistic Youth from Pediatric to Adult Healthcare: A Qualitative Study.
Jennifer L Ames, Arjun Mahajan, Meghan N Davignon and 2 others
PMID 35262827WHAT IT FOUND
Autistic youth, caregivers, and providers described an automatic switch to adult care at 18 as abrupt and unsupported.
They wanted gradual planning, direct communication, and a warm handoff between pediatric and adult clinicians.
Key findings
01Transition to adult healthcare often happened automatically at age 18, leaving autistic youth and caregivers without a roadmap for decision-making, readiness, and changing caregiver roles.
02Stakeholders described adult care as episodic and reactive, with little routine preventive care, and sexual health discussions often omitted because patients, caregivers, and providers were unsure who should raise them.
03Participants suggested gradual transition planning, warm handoffs, direct and plain communication, and practical supports such as checklists, videos, medical portfolios, longer transition visits, provider lists, and coordinators.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The study interviewed only 39 people in one healthcare system, so the themes may not apply in other settings or to all autistic individuals. It did not include non-speaking autistic youth, though some of their parents were interviewed. It did not examine how socioeconomic, racial, and cultural factors shape healthcare experiences. Providers reported no standardized tools for transition readiness and limited time in routine visits. The study is qualitative, so it describes perceptions and suggestions rather than testing whether transition strategies improve care.
Declared interests
Funding was provided by Autism Speaks and the Working for Inclusive and Transformative Healthcare (WITH) Foundation.
The easy way to misread this
Do not read the suggested transition supports as proven ways to improve care. This study interviewed 39 people about their experiences and did not test whether gradual planning, warm handoffs, or appointment tools changed health outcomes.