Tales of children with autism spectrum disorders who wander off, or "elope," as it is known in the field, have been largely anecdotal. Now research just published in the journal Pediatrics shows that half of kids with ASD do roam, putting themselves in danger with sometimes tragic results. It's a cautionary tale, the researchers say.
The researchers from the Interactive Autism Network and the Kennedy Krieger Institute surveyed 1,367 families with children between the ages of 4 and 17 who have ASD. They found that 49 percent of families said the child had attempted to elope once or more after age 4. The behavior usually wanes after age 11.
Of those 598 children, 316 had wandered off long enough to create real worry. The study included 1,218 children with ASD and 1,076 of their siblings who do not have autism. The siblings had "significantly lower rates of elopement across all ages compared with children with ASD," the study said.
The more severe the autism, the more likely a child eloped, most commonly from home, the store or school. In most cases, parents reported the child was heading somewhere or planning to do something specific, rather than just being confused or lost.
"Close calls with calamities like traffic injury or drowning are frequent, with police called in more than a third of cases," a statement accompanying the study said.
"There's reason to believe that this is a leading cause of death in children with autism and possibly the leading cause of death," senior study author and Interactive Autism Network director Dr. Paul Law told HealthDay News' Maureen Salamon. "Still, that's in some ways the tip of the iceberg, because most families are able to keep their children safe but have to modify their entire lives to do so. Families are often blamed for this and they're certainly not deserving of that because this is a very difficult problem."
"Certain children, such as those who are fascinated by water, can be at higher risk for wandering and may need special supervision at school. Tracking devices that are worn by the child are helpful and should be provided free of charge to families who need them," Geraldine Dawson, chief science officer of Autism Speaks, a science and advocacy group in New York City, told HealthDay.
When asked, 43 percent of parents said the issue had prevented family members from getting a good night's sleep, 62 percent said concerns kept them from going to or enjoying activities and 56 percent said elopement was one of the most stressful behaviors they had to cope with as caregivers to a child with ASD.
“For children who are prone to wander, this is a pervasive problem that affects all aspects of families' lives," Law told The New York Times. "Many parents just don't go out in public with their child because they don't feel safe with them, or they don't get any sleep at night because the child once escaped through the upstairs window."
Half of the parents said no one had offered guidance on preventing or coping with elopement.
"These results highlight the urgent need to develop interventions to reduce the risk of elopement, to support families coping with this issue and to train child care professionals, educators, and first responders who are often involved when elopements occur," the researchers concluded.
HealthyState.org in Florida published a list last year of eight tips Dennis Debbaudt, the father of a child with autism and an author on the topic, to help parents combat elopement. Among his suggestions: Make sure the child always has identification such as tags sewn into clothes or a medical alert bracelet. Introduce the child to neighbors so they will know if they see that child wandering. Have ready an emergency form with photo and description and other facts in case. Do a home security audit with a pro. Document efforts to keep the child safe in case someone claims you've been negligent.
"The behavior is not caused by any action on the parents part according to the researchers. Even the most vigilant parents of autistic children have experienced an eloping episode," noted an article on Examiner.com.
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