CHOP Study Finds Healthcare Providers Play Crucial Role in Guiding Autistic Adolescents and Their Families into Adulthood

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Healthcare providers are a vital resource for autistic adolescents and their families as they prepare for the transition to adulthood, which may include learning to drive, according to a new study from researchers at Children’s Hospital of Philadelphia (CHOP), recently published in the Journal of Autism and Developmental Disorders.

Researchers with the Center for Injury Research and Prevention (CIRP) and the Center for Autism Research (CAR) conducted in-depth interviews about independence, driving and transportation with 15 healthcare providers aiding autistic adolescents and their families. The findings underscored the need to understand how autistic adolescents and their families view autonomy. The study also highlighted the crucial role of healthcare providers in fostering collaborative decision-making around key milestones for adulthood, along with support strategies to help families assess driving readiness.

Healthcare providers are eager to improve quality of life for autistic adolescents by acting as facilitators during this transitional time. Providers recognized that working towards independence can offer significant benefits for autistic youths and their families. However, providers also acknowledged barriers that made it challenging to provide needed support for this population. They identified obstacles like limited time during clinical visits, a lack of comprehensive resources, and insufficient notice from caregivers to prepare for these discussions. Instead, providers recommend a more strategic approach aimed at meeting a family’s specific needs.

“Through our interviews with healthcare providers caring for autistic adolescents and their caregivers, we learned that talking about driving often sparked a broader conversation about independence and autonomy that many families hadn’t yet considered,” said Rachel K. Myers, PhD, lead author of the study, associate director and a scientist at CIRP. “Providers recognize their role in coaching and preparing young people and their families to navigate developmental milestones, such as licensure and driving, while also identifying the need for multidisciplinary teams and resources, tailored to meet individual needs.”              

This study builds on the authors’ prior research, which found that individualized training is a critical component for autistic adolescents in obtaining a driver’s license. Licensure can promote independence and mobility and potentially lead to improved access to educational, occupational training, social, and community engagement opportunities.

The authors continue to study pathways to independence for autistic adolescents and their families, recognizing that for some, driving may not be an ideal or safe option. In those instances, the research team is considering alternative ways communities can support independence and ensure participation in activities critical to adulthood.

Resources for families to help their autistic youths transition to adulthood are available at the Center for Autism Research, including the PASSAGE Program at CHOP, and Teen Driver Source.
This work was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development at the National Institutes of Health Awards R01HD079398 and R01HD096221 (PI: Curry).

Myers, R.K., Labows, C., McDonald, C.C. et al. Preparing to “Live a Life of Possibilities”: Experiences of Healthcare Providers Readying Autistic Adolescents and Their Families for Independent Driving. J Autism Dev Disord. Online April 25, 2024. DOI: 10.1007/s10803-024-06335-0.