As teens transition to adulthood, being able to get around on their own is a big step toward independence, enabling opportunities for social activities, post-secondary education, and work.
But what about this rite of passage for adolescents on the autism spectrum? How does their experience differ from their peers? These are the types of questions Allison Curry, PhD, MPH, wants to answer with the help of a new grant to fund a groundbreaking project that has the potential to help change the lives of many teens and young adults with autism.
“After reading a report that showed that a substantial proportion of young adults on the autism spectrum are socially isolated, not engaging in community activities, and not going on to post-secondary education or the workforce, I became interested in figuring out how these teens and their families approach mobility as an important part of the transition to adulthood,” said Dr. Curry, a senior scientist and director of Epidemiology and Biostatistics at the Center for Injury Research and Prevention at Children’s Hospital of Philadelphia Research Institute and assistant professor of Pediatrics at the University of Pennsylvania Perelman School of Medicine.
Dr. Curry reached out to her colleague, Benjamin Yerys, PhD, a clinical psychologist and senior scientist at CHOP’s Center for Autism Research (CAR), to collaborate with her on this important research.
When she first sought funding for this research, Dr. Curry quickly realized that the prevailing perception was that teens on the autism spectrum don’t drive. However, there had not been any studies specifically examining driving rates in autistic teens.
In order to pursue this line of research, Dr. Curry applied for and received a grant from the CHOP Ethel Brown Foerderer Fund for Excellence, designed to allow investigators to generate the preliminary data necessary to support external grant applications. The award enabled Dr. Curry and Dr. Yerys to link CHOP electronic health records to state-level licensing data, finding that one in three autistic teens without intellectual disability were, in fact, getting their driver’s license.
“This study was really important because it highlighted that even though nearly two-thirds of parents of autistic teens said they are driving or want to drive, only about 33 percent actually obtained their driver’s license,” Dr. Yerys said. “This brings up a lot of important questions. For instance, what driving instruction or parent supports helped those 33 percent to be successful in getting a license? What about the other teens? And, what factors led to their decision to not get a license?”
The results of this research, published in the journal Autism, provided the foundational data Drs. Curry and Yerys needed to further develop the research proposal for external funding. Now, Dr. Curry has received a five-year, $3.2 million grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) to fund “An Integrated Approach to Establish the Scientific Foundation for Driving Among Adolescents With Autism,” a new study that is unique in a few ways. First, her study design specifies the inclusion of teens with autism and their parents by collaborating with CAR.
“Our first step is to better understand how families make mobility decisions with their teens on the autism spectrum,” Dr. Curry said. “We want to ensure that families are well-supported. We also want to develop tools for clinicians to support these families.”
Dr. Curry and her team are currently gathering information in interviews with healthcare providers and driving educators and carrying out an online longitudinal study with 500 autism-parent dyads to determine how families make mobility decisions, including whether or not to pursue driving. This information will be used to help clinicians support families in this decision-making process.
The second element that sets Dr. Curry’s study apart is the examination of naturalistic driving behaviors. Simulator studies have compared the driving performance of teens with and without autism to identify differences in skills known to be critical for safe driving, but this is the first study to capture how they’re driving in actual on-road situations.
Through a partnership with the Virginia Tech Transportation Institute (VTTI), Dr. Curry’s team will outfit vehicles of 40 teens with a VTTI-developed proprietary video system.
“The device captures location and timing of each drive, as well as speed and acceleration. It will give us a firsthand look at what is happening in the teen’s vehicle before each driving error and crash,” Dr. Curry said. “With this information we will be able to tailor interventions to reduce crash risk for this specific group of teen drivers.”
Dr. Curry believes that CHOP provides the ideal environment to conduct this research: “CAR’s research infrastructure and experience in working with families, the Research Institute’s unparalleled access to both electronic health record data and objective driving data, and our strong relationships with our study partners — the University of Pennsylvania and VTTI — help drive discovery that wouldn’t be possible elsewhere.”