Research In Action

Autistic adolescents frequently encounter barriers to independence during the transition to adulthood. These youth and their families benefit from individualized support during this time; however, previous research shows that they are less likely to receive anticipatory health guidance than their non-autistic peers.

There is an urgent need to understand potential opportunities to identify and enhance resources available to healthcare providers supporting autistic adolescents. Toward this goal, we surveyed 74 healthcare providers about their practices discussing transition to adulthood topics with autistic patients. Our findings, recently published in the Journal of Adolescent Health, help us understand the current practices of healthcare providers and identify opportunities to improve the transition planning process for autistic adolescents and their families.

Survey participants included physicians; advanced practice professionals (nurse practitioners, physician assistants); psychologists; and social workers recruited from Children’s Hospital of Philadelphia and Philadelphia Autism Centers for Excellence who provided medical or behavioral healthcare to autistic adolescent patients. Providers told us they often initiated transition to adulthood conversations, nearly 75% of the time, with adolescents and caregivers rarely raising these topics during visits. Notably, over half of providers reported being only “somewhat” or “a little” comfortable discussing transition with their autistic patients.

Timing Matters

Conversations were typically not initiated until mid- to late adolescence, with providers reporting they began discussing transition topics at a median patient age of 16 years. While this finding is consistent with prior research, early adolescence is the recommended time frame to initiate transition planning, as it gives providers time to prepare patients and families for independence, reduces perceptions of an abrupt transition from pediatric care, and may improve healthcare engagement following transition to adulthood.

Prior research also shows that resources to support earlier and routine discussion of independence are critical to increasing implementation of transition strategies and planning recommended by pediatric and adult providers.

While providers generally discussed topics relating to well-being and physical health, we observed specific topics that were infrequently discussed (such as interpersonal/intimate relationship skills, hygiene, and pregnancy prevention). Despite prior research suggesting autistic teens perceive basic needs as important for their health, such topics, including housing and food management/planning, were among the least commonly discussed topics.

In related work, our team has identified that only 20% of providers discuss transportation independence, including readiness to drive and other mobility issues, with autistic adolescents. These results suggest that there is an urgent need to improve practices to support autistic adolescents and their families approaching this important developmental transition.

Next Steps

Our results highlight the importance of creating resources that can be used by a diversity of healthcare providers to adhere to transition practice recommendations and prepare patients and families for adulthood. We are currently completing qualitative work to better understand the experiences of providers in discussing transition and their perceived resources needs.

While we did not include the perspectives of autistic adolescents and their families in this study, we are currently conducting complementary research with these youth and their caregivers to understand adolescent and caregiver experiences with this transition. This information is crucially needed to help us develop and refine best practices for supporting autistic adolescents and their families.

Resources for families are available at TeenDriverSource.org and CAR Autism Roadmap.

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