Autism & Wandering: An Investigator’s Perspective
Posted by Amy Daniels, PhD, Autism Speaks assistant director of public health research. She is one of the authors behind the important new report on wandering by children with autism.
Before joining the staff of Autism Speaks, I was fortunate to be part of the Interactive Autism Network (IAN) study team, an Autism Speaks-supported project of the Kennedy Krieger Institute.
As many of you may know, IAN is a web-based registry of over 43,000 individuals and families affected by autism spectrum disorder (ASD). Through IAN, these families and individuals can participate in a variety of autism studies. Often they do so by completing questionnaires about their or their child’s diagnosis, treatments and education.
When IAN introduces a new questionnaire, it’s typically in direct response to family requests for further exploration of an issue or question important to them. One such example was last year’s questionnaire and study on bullying. I am hopeful that the IAN reports generated from this study will prompt schools and educators to take action to better protect children with autism.
Another important issue raised by parents was the scary situation created when children with autism wander or bolt from a safe place. In the autism field, we call this “elopement.” This issue is so important that autism advocates have raised it with the Interagency Autism Coordinating Committee (IACC) – the federal committee responsible for guiding the nation’s autism research agenda.
Certainly we’ve all seen news stories about children with autism losing their lives or being injured when they wander from safe spaces. We needed to know how big of a problem this is. What is the impact on families? And what can be done about it?
In addition, parents told us that they often felt “blamed” for their children’s wandering. When they sought help, some suggested that the problem was more due to their inattentive parenting than their children’s autism.
The IAN team, together with a number of advocacy organizations including Autism Speaks, responded to the IACC’s urgent call for information by launching the Elopement and Wandering Questionnaire. I was part of the team that analyzed responses. Our report appears today in the journal Pediatrics.
As you’ll read in this website’s related news story, our team found that nearly half (49 percent) of parents who completed the survey reported that their child with autism had attempted to “escape” from a safe place such as a home, store or school. We limited our survey to children older than 4, since wandering is a normal behavior among younger children.
I found it particularly telling that wandering proved much more common among children with ASD than among their siblings not on the autism spectrum. Overall, only 13 percent of unaffected siblings had wandered. That clearly disputes the notion that this serious problem has to do with the parents!
The study also showed that when children wander, around half go missing and many put themselves in serious danger. Not surprisingly, parents reported great stress. Many reported that the problem prevented them from sleeping soundly or enjoying activities outside the home.
Among the most devastating findings was that half of all parents reported receiving no help in their attempts to prevent or address the wandering behavior.
The survey also asked families about children’s motivation or state of mind while “on the run.” Do children wander off in a fog, or are they trying to achieve some goal?
Many parents reported that their child’s behavior seemed goal directed. They were trying to get somewhere or do something. It is interesting that children with autism and PDD-NOS seemed to be “happy, playful, or exhilarated” when they set off to wander. By contrast, children with Asperger syndrome tended to wander when anxious – perhaps fleeing anxiety-producing situations.
Thanks to their participation in the IAN survey, families have helped to highlight the important issue of wandering in children with autism. Today, as part of the science team at Autism Speaks, I feel an urgency to help those that are looking for ways to prevent or address their child’s wandering.
The time to develop solutions is now. We need more research on effective prevention strategies.
I’m glad to report that Autism Speaks and the National Autism Association both offer a wealth of resources for families. Please see this website’s Autism Safety Project and National Safety Resources pages. These include instructions on how to create safety plans for children with autism.
Autism Speaks is also a member of the Autism Wandering Awareness Alerts Response Education (AWAARE), a coalition to prevent wandering-related injuries and deaths. AWAARE can help families reach out and educate first responders, teachers and other members of their community. While it may not be possible to prevent wandering from ever occurring, having a family safety plan and an informed community can help ensure that children who wander return home safe.
Thanks again to IAN and Autism Speaks families, donors and volunteers for supporting this important work. Please don’t hesitate to reach out with questions or feedback by leaving a comment or emailing us at GotQuestions@autismspeaks.org.