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CHOP Launches New Study to Support Independent Mobility for Autistic Teens and Young Adults

 
 

Living as independently as possible is the goal of just about every teenager, and it’s a parent’s delicate role to strike the balance between letting go and offering support. For families of teens and young adults on the autism spectrum, this balancing act can be even more complicated than usual. “Increasing independence” can look different for everyone depending on their needs, and parents of autistic teenagers can often spend years working with their child and their support team to help build the necessary skills.

An important piece of independence is having the ability to get where you want to go- something that neurotypical people might easily take for granted. Learning to drive is an option for many adults on the autism spectrum; others may use paratransit, which is available to people with disabilities who are functionally unable to use regular fixed-route transportation; and many rely on public transportation or rideshare services like Uber or Lyft to get from place to place.

Having access to independent means of transportation contributes to a higher quality of life and other long-term opportunities, such as post-high school education or employment and being socially involved and connected within their community, says Benjamin Yerys, PhD, a scientist and clinician at the Center for Autism Research (CAR) at CHOP who studies issues related to independence and transition to adulthood. “Autism and other neurodevelopmental conditions like ADHD can affect decision-making, information processing and attention to varying degrees, and we need to understand what resources, specialized instruction, and other supports might be helpful for teens and adults with ASD who are preparing to drive or navigate public transportation.”

To that end, researchers at CHOP have begun work on the Autism ETA (Evaluating Transportation Among Adolescents) Study aimed at helping to support autistic teens and their families in doing just that. Allison E. Curry, PhD, MPH, of the Center for Injury Research and Prevention, is leading a multidisciplinary team of researchers working to understand the experience and decision-making process families use when it comes to mobility, whether it’s learning to drive or using other forms of transportation. “Ultimately, we want to help families find the support they need for their loved ones on the autism spectrum to navigate their community as safely and as independently as possible,” says Dr. Curry.

A previous study from the same research team found that approximately one in three autistic teens without an intellectual disability get a driver’s license; yet, we actually know very little about how families undertake the decision whether or not to drive, and then how they carry out the instruction needed. “What we do know is that parental support for their child’s independence is a key component,” says Yerys, who worked with Curry and colleagues on another study exploring common factors among autistic teens who gained a driver’s license.

The newest study in this series has just begun, and the researchers are partnering with 16- to 24-year-olds on the autism spectrum, along with their parents, to answer some critical questions and learn where there are gaps in support:

  • How do families decide if their teen with autism should learn to drive?
  • How can we best support families when they decide to pursue driving?
  • How can we best support families when they decide not to pursue driving?
  • How do teens with autism learn safe driving skills?
  • How does the risk of adverse outcomes for teen drivers on the autism spectrum differ from the risk for other teen drivers?

For families who are beginning to consider these questions for themselves, the researchers agree that the first step should be to discuss driving and public transportation readiness with your developmental pediatrician and autism support team. Both tasks involve social judgment, flexibility to change, and the ability to control one’s anxiety and sensory sensitivities; and driving requires additional skills such as motor coordination and the ability to focus, multi-task, and prioritize. ASD can affect decision-making, information processing and attention to varying degrees. On the other hand, an individual with ASD may have characteristics that promote safe driving behavior, such as vigilance to follow driving laws. To help guide this decision, the research team created this helpful fact sheet and resource guide to share with your teen and your support team.

If your family would like to learn more about how to participate in this important research study on mobility, transportation, and independence, learn more here.