What’s Your ETA? Researchers Improving Independent Mobility for Autistic Adolescents

By Kate Knab

The freedoms that come with obtaining a driver’s license are more than the ability to change the music on the radio and traveling from place to place without relying on parents. For many teens, licensure is a critical step towards independence in the transition from adolescence to adulthood.

With funding through the New Jersey Department of Health, investigators in the Center for Injury Research and Prevention (CIRP) at Children’s Hospital of Philadelphia are developing research-based novel tools and resources to help autistic adolescents stay mobile, whether they plan to drive or not. 

“We are in a unique perspective being at a leading children’s hospital to be able to research this,” said Director of Epidemiology and Biostatistics at CIRP and Senior Scientist Allison Curry, PhD, MPH. “We’re on the cusp of change in the way we look at traffic safety, and we can serve as a model for future researchers.” 

Dr. Curry first studied driving outcomes among autistic adolescents through the lens of increased risk. Surveys conducted alongside Patty Huang, MD, a clinician in the Autism Integrated Care Program and Division of Developmental and Behavioral Pediatrics at CHOP, indicated that two-thirds of autistic teens expressed interest in driving, but few studies reported on how many  were licensed, their age when  licensed, and how their road to getting licensed differed from their non-autistic peers.

“I decided to take a different, more strengths-based approach,” Dr. Curry said. “I wanted to study more from the perspective of supporting the decision to drive rather than focusing on risk.”

With this new focus in mind and support from the CHOP Foerderer Award, Dr. Curry and her colleagues found that 1 in 3 autistic adolescents were getting their license, which highlighted a disconnect between the proportion of teens interested in driving and those who achieved licensure. This led Dr. Curry and her team to investigate how families make the decision to drive or find other ways to achieve independent mobility, available resources, and how best to support those teens and young adults who choose not to drive.

“Now that we have a firm understanding of how parents and their autistic teens feel about driving and other ways to get around, our goal is to start making these learning modules and resources so that they can be available to families who really need them,” Dr. Curry explained. 

The Empowering Transport among Autistic Adolescents (ETA) program, funded by the New Jersey Governor’s Council for Medical Research and Treatment of Autism, will build upon this research to establish a driver education framework on an interactive website that parents and autistic adolescents can use as they progress from early adolescence to independent mobility.

The website will offer four interactive learning modules created from evidence-based content:

• Preparing for Independent Mobility
• Assessing Driving Readiness
• Learning to Drive
• Non-driving Mobility Options

Each module will be informed by data collected from New Jersey parents, adolescents, driving rehabilitation specialists, other driver education professionals, and healthcare providers. Dr. Curry and colleagues are currently developing a clickable prototype of the website that they hope to integrate into clinical trials to evaluate ETA’s effectiveness. Other planned resources for the website will help families overcome geographical, financial, or time-related barriers to independent mobility, regardless of intellectual disability status or mobility choices.

A key aspect of the grant will focus on supporting autistic adolescents and young adults who are either not interested or not ready to drive. Because independent transportation is a crucial step in the transition to adulthood and community engagement, Dr. Curry has partnered with Ben Yerys, MD, a clinical psychologist with the Center for Autism Research at CHOP, and the Partnership with Autistics for Successfully Supporting Adult Goals and Experiences (PASSAGE) program to identify families who are interested in learning about mobility options available outside of driving. Their input and experiences will help Dr. Curry’s team develop resources to support independent mobility for all autistic teens and young adults, whether they drive or not.  

The ETA website prototype and initial learning curriculum will be built from foundational research about autism and driving conducted by the NJ-SHO Center for Integrated Data with Dr. Curry as Principal Investigator. Ideally, Dr. Curry anticipates the website will eventually serve as a model to support other states and jurisdictions interested in encouraging independent mobility for autistic individuals. She has already spoken with several states that want to pursue a similar framework, and she invites collaboration with investigators from other states who want to participate in complementary research to potentially bring these resources to their own jurisdictions.