The tendency of individuals with
autism spectrum disorders (ASD) to wander or "bolt" puts them at risk of
trauma, injury, or even death - as was reported earlier this week, when four-year-old Jackson Kastner drowned after wandering from his Monroe County, MI, home. While we all want to prevent these tragedies, information on this critical safety issue is lacking.
Today, the Interactive Autism Network (IAN), with support from leading autism advocacy groups, launched the first major survey to study the experience of wandering and escaping without permission among individuals with ASD. The survey will help researchers begin to answer important questions:
• How often do individuals with ASD wander off or attempt to escape? 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 wandering behavior place on caregivers?
• What can be done to protect individuals with ASD and support their families?
To understand wandering behavior in ASD, researchers need information both from families of individuals who do and do not wander or escape. 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 https://www.ianresearch.org/login) and be the parent or guardian of a child or dependent adult with ASD.
"This new survey will provide vital information to families, advocates, and policy makers alike as they work to keep individuals with ASD safe." says Dr. Paul Law, director of the IAN Project at the Kennedy Krieger Institute. Insights gained from this survey will help prevent tragic accidents like Jackson's, as well as risky incidents that generate fear in the lives of families every day.
About the IAN Project:
Since 2007, the IAN Project 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.
Image courtesy of Henning Muhlinghaus.
