Though wandering has long been a concern within the autism community, no one knows exactly how many people are affected by the issue. Now, a handful of autism organizations are banding together to find out.

The Interactive Autism Network, or IAN, is launching a survey Wednesday asking parents of those with autism whether or not their children have a tendency to bolt from home or school.

Researchers say the survey is designed to answer a number of key questions including who is most at risk for wandering, how often it occurs and what can be done to help families dealing with the issue.

“Virtually no research has been conducted on this phenomenon in ASD,” says Paul Law, director of the IAN Project, a national autism registry with 36,000 participants that has been collecting data on parents and children with the developmental disability since 2007. “The new survey will provide vital information to families, advocates and policy makers alike as they work to keep individuals with ASD safe.”

Previously, the only data on wandering among those with autism came from a small online survey that the National Autism Association conducted in 2007. In that poll, 92 percent of parents said their child had wandered at least once.

The new research effort is open to all families of individuals with autism, whether or not they wander. It is being backed by the Autism Research Institute, the Autism Science Foundation, Autism Speaks and the Global Autism Collaboration.

The survey is not the only effort of late to address wandering among those with autism. A recent Centers for Disease Control and Prevention proposal called for the issue to be added to the diagnostic coding system that’s used by clinicians. If approved, doctors would be able to specify wandering as a secondary classification for individuals with developmental disabilities and other conditions.

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