Transition to Adult Healthcare for Teens and Young Adults with ASD

Background: With increases in Autism Spectrum Disorder (ASD) prevalence, not only is the number of children diagnosed with ASD increasing, but the number of adolescents with ASD who are transitioning to adulthood is also rising. This results in a growing number of young adults with ASD transitioning from the pediatric to adult health care systems. Without a coordinated transition plan, pediatric providers often continue to provide care to young adults with ASD that is beyond the scope of their medical training. When adult providers are identified who are willing to assume the care of young adults with ASD, they often feel unprepared to address the unique needs of this population.

Objectives: Develop resources for pediatric and adult medical providers to facilitate transition to adult healthcare for teens and young adults with ASD.

Methods: A pediatric primary care practice that serves children with ASD and other special health needs as well as their typically developing siblings was identified. Staff, patients, and families were surveyed to determine baseline transition practices. Existing resources were identified. New resources for staff, patients, and families were created and implemented. Results from utilization of resources and technologies were accessed to identify improvements and barriers.

Results: Baseline data revealed much variability across staff and families regarding addressing transition. In addition to the need for improved consistency, topics needing greater attention were identified. These included financial and legal issues as well as vocational, educational and recreational options post high school. An evidence-based and replicable Patient Checklist, starting for patients at age 12 and continuing through ages 21+, was implemented to improve transition activities within the practice. The checklists included a formal transition policy, staff and family educational resources, a templated HEEADSSS -ASD assessment to aide providers in structuring a psychosocial interview with a young adult with ASD, a transition registry to create a working database of transitioning patients, and a comprehensive transition template imbedded into the practice EMR system to track completion of transition goals for individual patients. While designed for the transitioning patients of a pediatric practice, these same elements can guide an adult primary care practice in readying their practice to receive young adults with ASD.

Challenges in implementing the transition process included finding time within provider schedules to discuss transition-related issues with patients/families, changing existing practices and methodologies throughout the organization to help support the new transition model, and identifying adult providers with whom to collaborate regarding patients’ ongoing care needs. Those families for whom the process was implemented reported better preparation for transition including greater access and knowledge of adult systems of care and more satisfaction with medical care from adult providers.

Conclusions: Transition from the pediatric to the adult healthcare systems presents unique challenges for people with ASD. To ensure a coordinated and seamless transition, the process must be clearly outlined and started early in adolescence, the adolescent and family must be an integral part of the transition process, and there must be collaboration and communication between the pediatric and adult care providers.