Parents of autistic children say that one of the most stressful behaviors they have to contend with is their child wandering off alone — so much so that it prevents families from engaging in activities outside the home — and half of parents with concerns about their child’s straying say they haven’t received any guidance or advice on preventing the behavior.
In the first study to gauge how commonly kids with autism spectrum disorders wander, or “elope,” researchers found that half of 1,367 surveyed families with autistic children aged 4 to 17 said their child had wandered away at least once after age 4. Among those families, more than half said their child had disappeared long enough to cause concern.
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Forty-three percent of parents whose children had gone missing said their child’s wandering prevented family members from getting a good night’s sleep, and 62% reported that the autistic child’s tendency to elope prevented their family from attending or enjoying activities outside the home.
Autistic children who wandered off were also likely to experience “close calls” — 65% of wandering children were at risk for traffic accidents and 24% were at risk for drowning — and police were called in a third of cases.
“There are an alarming rate of elopements and it is an incredibly common behavior that children with autism engage in,” says lead study author Dr. Paul Law, senior author and director of the Interactive Autism Network (IAN) at the Kennedy Krieger Institute. “They frequently go missing, and often have dangerous encounters.”
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On average, children were reported missing for just over 40 minutes and were most likely to elope from their home, a store or school. Kids who wandered off were likely to be older, have more severe autism symptoms and have lower intellect and communication scores, compared with autistic children who did not elope. Missing children were also less likely to respond to their name.
The authors said children who wandered often had a specific goal in mind — they were planning to go somewhere or do something, as opposed to simply being confused or lost, as is common among other people who commonly wander, such as those with Alzheimer’s disease.
“Right now this is still an unfamiliar issue. People know this happens in the Alzheimer’s community, but no one tells parents that their autistic child may wander from safety or elope,” says Lori McIlwain, executive director of the National Autism Association who pushed for the study. McIlwain’s son Connor has autism and has wandered away from school on a few occasions — one time almost making it to a nearby highway. “My fear is that parents still do not know this can happen. I would love if all physicians were aware of this issue and could communicate and educate caregivers about this.”
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Law says he hopes the study will increase awareness among doctors about the prevalence of elopement, which he describes as a silent issue. “Additional research will still be needed in order to develop in-depth practices for how to treat individuals at risk for elopement. We know we have locks and doors, but we do not yet know the best approach, and each child with autism is unique.”
