A new study from the US finds that nearly half of children with autism wander off or run away, often placing themselves in danger. An analysis of responses from parents surveyed by the nation’s largest online autism research project, shows children with autism spectrum disorders (ASD) are four times more likely to “elope” than their unaffected brothers or sisters.

Researchers from the Interactive Autism Network (IAN), a project of the Kennedy Krieger Institute in Baltimore, Maryland, write about their findings in a paper expected to appear online (Epub ahead of print) in the journal Pediatrics on 8 October.

Paul Law is director of the IAN project and senior author of the paper. He says in a press statement:

“Since the launch of IAN, we have heard from families of children with autism that their children often place themselves in danger by wandering or eloping.”

“These are the first published findings in the US that provide an estimate of the number of children with ASD who not only wander or elope, but go missing long enough to cause real concern,” he adds.

Law and colleagues found the places children most often wandered off or ran away from were their home or someone else’s, a store, or from school. And some children had tried to elope several times a day.

In an attempt to explain the reasons why running away behavior appears to be more common in children with ASD, Law says in a comment reported by Reuters that “it’s rooted in the very nature of autism itself”.

Examples parents gave as reasons for children running away included a desire to satisfy curiosity or explore, to find an enjoyable place, and to get out of a stressful or uncomfortable situation.

Law says kids with ASD don’t have the social skills to check in with their parents first before they run off.

For their study, the researchers used online questionnaire responses from parents of 1,218 children with ASD and 1,076 unaffected siblings.

The main figure they were looking for was how many children had shown elopement or wandering off tendencies starting at age 4, when such behavior is not typical.

Another figure they were interested in was how many children had gone missing long enough to cause concern. Such cases were classed as “missing”, whereas those who had not yet come into this category were classed as “non-missing”.

Then, from responses to questions about stress, the researchers tried to link up elopement characteristics to measures of family stress.

The researchers found that in this sample, from age 4 onwards, 49% of children with ASD had tried to elope or run away at least once. And of these, 53% went missing long enough to cause concern.

In the age range 4 to 7 years, the researchers found 46% of children with ASD had eloped or run away, and this was four times the rate of their unaffected brothers or sisters.

In the age range 8 to 11 years, 27% of children with ASD had eloped, compared with only 1% of their unaffected siblings.

From what the parents said, the researchers suggest the age at which most attempts to elope takes place is around 5.4 years, and when asked about “the worst year ever”, 29% of parents said their child had tried to elope several times a day, with another 35 saying it happened at least once a week.

Close calls with traffic injury were reported in 65% of the missing children, and close calls with drowning were reported in 24%.

Elopement appeared to be goal-oriented: the children had a reason in mind for going somewhere or doing something.

Over half (56%) of parents said elopement was one of the most stressful behaviors they had to cope with in caring for a child with ASD. 50% of them said they had received no help or guidance on how to deal with this behavior.

On average, children went missing for 41.5 minutes.

When their child went missing, the most common thing parents said they did was get in touch with neighbours (57%). Calling the police (35%), calling the school (30%) and staff in the store (26%) were the next most common.

Law says they hope their findings will “inform families, physicians, educators and first responders of the real consequences of elopement”.

“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,” he urges.

He and his co-researchers suggest more studies should be done to find out if there are different types of elopement, each requiring a different approach to preventing it. The more we understand this tendency, the more chance of finding ways to help parents cope with this extremely stressful behavior, they say.

Written by Catharine Paddock PhD