UPDATED
A new study finds that nearly half of children diagnosed with autism have tried to wander away from home, school, or other places, and many wind up missing, even temporarily.
The study, published online today in the journal Pediatrics, captures what parents of children with autism have described for years: that their children wander off, or elope. It confirms preliminary findings by researchers from the Interactive Autism Network and the Kennedy Krieger Institute.
For the study, researchers surveyed more than 1,200 families who have children age 4 to 17 who have autism. Of them, nearly 600 reported their child had tried to elope at least once. Half of those were missing long enough to worry their families. In 65 percent of cases, parents said their children were nearly injured by traffic; 24 percent said their children had a brush with drowning.
It’s still not clear what causes children to wander away or if there are different types of wandering that would require different types of prevention, but researchers found that the more severe a child’s autism, the more likely they he or she was to elope. And about half of parents surveyed said their child left because he or she intended to go somewhere or do something—in other words, the children who wandered weren’t just confused or lost. About three quarters of children who eloped did so from home. About 30 percent also wandered away from a classroom or their schools.
An entire organization, the Autism Wandering Awareness Alerts Response and Education Collaboration, has formed to work on just this aspect of autism. One section of its website is devoted to providing tools for school administrators.
“We hope that the results of this study will inform families, physicians, educators and first responders of the real consequences of elopement,” said Dr. Paul Law, a director at the Kennedy Krieger Institute and the principal investigator overseeing the development of the Interactive Autism Network. “Parents often fear being viewed as neglectful when their children leave from safe places. This study demonstrates that we urgently need interventions to address elopement and provide support to affected families.”
Fifty-six percent of parents said wandering was one of the most stressful behaviors they had to cope with as caregivers of a child with autism, and half said they hadn’t received any guidance about preventing or addressing this behavior.
Law said that until more research is done and interventions are developed to address this behavior, he hopes this study’s results will inform families, doctors, educators and first responders who grapple with the consequences of elopement.
UPDATE: Parent Lori McIlwain of Cary, N.C., told me today that some schools have developed protocols for how to handle these situations and how to prevent them from happening, including building fences and putting inexpensive door chimes on classroom and exterior doors. But she said parents must always be notified when a child wanders or bolts from school—something that didn’t happen during one of times her 12-year-old son Connor disappeared. And schools also must call police in these cases.
But, she said, “this issue should not lead to more reason or justification for restraint and seclusion practices. [Schools] need to get to the root of the issue: Why is the child wandering away or wanting to bolt?”
McIlwain, executive director of the National Autism Association, said she has talked with Connor about what dangers he may face if he leaves school alone. For schools near bodies of water, safeguards are especially critical, she said. In January, the principal of a school in New Hampshire rescued a student with autism who bolted from school and fell into an icy river.
“Sometimes [schools] fail to acknowledge the ‘What if?’ and our children end up being their lesson to learn.”
On a related note, a new analysis about the proposed new definition of autism finds that 91 percent of those with the diagnosis now would still qualify, much different than previously predicted. Earlier this year, one analysis found that only 45 percent of those now diagnosed as having an autism spectrum disorder would qualify for diagnosis by the definition now under review for inclusion in a revised edition of the Diagnostic and Statistical Manual of Mental Disorders.