Within a matter of seconds, your child slips from your watchful eye and wanders away. Soon, he or she is nowhere to be found.
For any parent, few things strike more fear than a missing child. But for parents of children with autism, the potential for wandering may be more dire: children with autism have a tendency to flee, and can sometimes put themselves in harm’s way. Although it is a little-known problem, wandering is perhaps the leading cause of death among children with autism, reports CNN. (More on TIME.com: Closely Spaced Pregnancies May Contribute to Autism)
In a recent feature article, CNN’s Elizabeth Landau told the story of Michael Browne, a 10-year-old boy with severe autism, who is frequently inclined to bolt. “We constantly have our eye on the door and on Michael, and it’s a hard way to live,” Michael’s mother, Melanie Browne, of Katy, Texas, told Landau. “I think that’s the hardest part of raising him, is just the wandering issue.”
There may be a variety of reasons that autistic children tend to run away from home or from adult supervision, experts say. Landau reported:
[A] common underlying factor is impulsivity, [pediatric neurologist Dr. Max] Wiznitzer said. They may feel stress or sensory overload from a situation and want to leave it; or, they may be attracted to a certain place and try to go there. An underlying condition such as anxiety should be treated, including with medication if necessary, he said.
It’s a problem that autism groups say deserves more attention and study. The Interactive Autism Network is now recruiting families to participate in a major survey about the behavior in order to understand whom it affects and how commonly. The findings may inform the debate over a proposal to make wandering an official diagnosis, which would give the behavior a “diagnostic code” for clinical and insurance purposes. (More on TIME.com: Study Linking Vaccines to Autism Is “Fraudulent”)
No matter which side of the issue they fall on, doctors and parents agree that preventive measures must be taken now to help keep kids from wandering off alone. Alarm systems, deadbolt locks and GPS tracking devices are just a few of the tools parents may use.
Landau’s interview with the Brownes conveys the difficulty in dealing with wandering:
Promoting an understanding of wandering in autism is important for Browne, who has dealt with police, teachers and neighbors who seem to blame her for Michael’s behavior, as if bad parenting were the cause. And she feels misled by doctors who suggested that with enough early intervention, Michael’s autism symptoms would markedly improve. Despite specialized programs beginning at age 2, he still can’t have a conversation and has been prone to running off since age 4.
“They want you to dream big, especially when they’re young. But then, when you realize your child is severe, there has to be some support for that, and you have to come to terms with that,” she said. “You end up grieving more.”
(More on TIME.com: Study: Living Near a Highway May Contribute to Autism Risk)
Like so many parents of children with autism — as well as clinicians and researchers — Browne said she hopes for better treatments, including new medications, for kids like Michael.