Development and implementation of health care transition resources for youth with autism spectrum disorders within a primary care medical home.
Transition tools help families only when clinics also fix provider time and training gaps.
01Research in Context
What this study did
A clinic team built a transition support package for youth with autism. It gave families checklists, provider scripts, and visit planners.
They rolled it out in a primary care medical home. Staff tracked how often they used the tools and asked families if they got more help.
What they found
Families said they received more help during visits. Yet providers only used the tools about half the time.
The same old barriers popped up: short visits, little training, and no extra pay.
How this fits with other research
Burke et al. (2018) warned that rigid plans fail. Their parent-training study showed you must tweak timing and targets for each family. Ferguson et al. (2021) proved them right: even slick tools flop when the system stays rigid.
Kaufman et al. (2010) already mapped the pain. Parents and doctors agreed medical homes were broken for kids with autism. The new package tries to patch the holes, but the 2021 data show the floor is still cracked.
Aleman-Tovar et al. (2025) pushed further. They gave Latinx caregivers six advocacy classes and saw big gains. Their culturally tuned parent power adds the missing piece that the 2021 medical-home package left out.
Why it matters
You can hand families the best checklists in the world, but if the clinic schedule gives you ten minutes and zero training, nothing changes. Ask your boss for brief booster training and built-in appointment slots labeled "transition visit." Without that, your shiny new forms will sit in the drawer next to the old ones.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Block one extra 15-minute slot for each teen with autism and bring the shortest transition checklist to that visit.
02At a glance
03Original abstract
As adolescents become adults, they typically change from seeing a pediatric health care provider to seeing a health care provider who specializes in working with adults. Adolescents with autism spectrum disorder may have more difficulty finding an adult health care provider who is trained to address the varied needs and medical and mental health issues that often are seen with autism spectrum disorder. Without careful planning for transition to adult health care, patients may continue to be seen by pediatric providers who may not be familiar with adult health needs. This quality improvement project focused on improving transition to adult health care by creating varied supports for the patient, family, and the health care team and putting them into action within a pediatric medical practice that serves over 250 adolescent and young adult patients with autism spectrum disorder. Before the supports were put into place, patients and families received limited and inconsistent communication to help them with transition. While the supports helped increase the amount and quality of help patients and families received, medical providers skipped or put off transition discussion in approximately half of well visits for targeted patients. Challenges in implementing the transition process included finding time to discuss transition-related issues with patients/families, preference of medical providers to have social workers discuss transition, and difficulty identifying adult health care providers for patients. This suggests more work is needed to both train and partner with patients, families, and health staff to promote smooth and positive health transitions.
Autism : the international journal of research and practice, 2021 · doi:10.1177/1362361320974491