Today, the Interactive Autism Network (IAN), with support from leading autism advocacy groups including the Autism Science Foundation, launched the first major survey to study the experience of wandering and elopement, or escaping, among individuals with autism spectrum disorders (ASD). The tendency of individuals with ASD to wander or “bolt” puts them at risk of trauma, injury or even death, yet information on this critical safety issue is lacking.
Since 2007, the IAN Project, www.ianproject.org, has connected thousands of individuals on the autism spectrum and their families with researchers nationwide to accelerate the pace of autism research through an innovative online initiative housed at the Kennedy Krieger Institute in Baltimore, Maryland. With more than 36,000 participants today, the IAN Project has the largest pool of autism data in the world.
“Although similar behavior has been studied in Alzheimer’s disease and autism advocates identify elopement as a top priority, virtually no research has been conducted on this phenomenon in ASD,” said Dr. Paul Law, Director of the IAN Project at the Kennedy Krieger Institute. “The new survey will provide vital information to families, advocates and policy makers alike as they work to keep individuals with ASD safe.”
The survey will help researchers begin to answer important questions:
- How often do individuals with ASD attempt to elope? How often do they succeed? Under what circumstances?
- Which individuals with ASD are most at risk? At what age?
- What burden do efforts to thwart elopement behavior place on caregivers?
- What can be done to protect individuals with ASD and support their families?
To understand elopement and wandering behavior in ASD, researchers need information both from families of individuals who do and do not wander and elope. In order to determine who is at risk, all families in the U.S. autism community are encouraged to participate in the survey, whether or not their loved one engages in these behaviors. Survey participants must be enrolled in the IAN Project (to register, visit www.ianresearch.org) and be the parent or guardian of a child or dependent adult with ASD.
Due to the urgent need for this information by the autism community, preliminary data will be made available on April 20, 2011, provided the necessary sample size is reached for the research survey.
This survey is funded by the Autism Research Institute, Autism Science Foundation, Autism Speaks and Global Autism Collaboration. The IAN Project is also supported by the Simons Foundation and the National Institutes of Health.