The first major study on runaway behavior among children with autism confirms that it is both common and extremely stressful for families. Yet relatively few families are receiving professional help or guidance.
These insights are among the preliminary results of the IAN Research Report: Elopement and Wandering, a project of the Kennedy Krieger Institute’s Interactive Autism Network (IAN) funded by Autism Speaks, the Autism Science Foundation, and the Autism Research Institute.
Over the course of three weeks, over 850 families responded to IAN’s online Elopement and Wandering Questionnaire. Their responses indicate that roughly half of children with an autism spectrum disorder (ASD) attempt to bolt or otherwise leave safe places between the ages of 4 and 10—a rate nearly four times higher than that of their unaffected siblings. Among children 7 to 10, nearly a third continue to wander or bolt—a rate eight times higher than their siblings.
The figures are particularly sobering given that more than a third of the wandering children lacked the ability to reliably communicate their name, address, or phone number. Moreover two out of three families reported that their child’s wandering had resulted in a close call with traffic, and nearly a third reported a near drowning. A third of parents also described calling the police for help on at least one occasion.
Particularly worrisome to those in autism research and advocacy, the survey found that fewer than one in five families had ever received help in the form of counseling from a psychologist or other mental health professional, and fewer than one in seven had gotten advice from a pediatrician or other physician.
“When a child wanders or runs away unexpectedly, it is so stressful for families and puts the child at risk for injury,” says Autism Speaks chief science officer Geri Dawson, Ph.D. “Yet, the medical community has not recognized this as a challenge that many families face. In fact, parents are often blamed when their child wanders. Our goal is to have the medical community understand that this is a behavior that is common and that parents need help, not blame.” By recognizing wandering as a common and important problem, Dr. Dawson adds, “We hope that there will be new strategies for helping families, such as a tracking devices and specialized training for first responders.”
Further demonstrating the toll on families, three in five admitted that they avoided otherwise enjoyable outside activities for fear of their child wandering. And two in five said they lost sleep over the problem.
The parents surveyed also provided insights into why children with ASD wander, the top five reasons given being that their child “enjoys exploring” (54%), “heads for a favorite place” (36%); “escapes anxieties/demands” (33%); “pursues special topic” (31%), and “escapes sensory discomfort (27%).
IAN, the nation’s largest online autism research project, receives funding and scientific support from Autism Speaks in partnership with the Simons Foundation and NIH. Autism Speaks and the Kennedy Krieger Institute encourage families of both adults and children on the spectrum to consider completing the Elopement and Wandering Questionnaire and participating in IAN research.