Parents of Children with Autism Face Challenges with Wandering

More than one-quarter of children with autism spectrum disorder and/or a combination of intellectual disabilities and developmental delays will wander.

More than one-quarter of children with autism spectrum disorder (ASD) and/or a combination of intellectual disabilities and developmental delays will wander.

Andrew Adesman, MD, chief of developmental and behavioral pediatrics at Steven & Alexandra Cohen Children’s Medical Center of New York, told Pharmacy Times that he thought the percentage of children with ASD who have wandered in a given year is “alarmingly high.”

Dr. Adesman highlighted this and other important pieces of information gleaned from his study published in PLOS One, including the fact that children with ASD face “tremendous risks” to their safety and well-being if they wander.

“Children with ASD who are most likely to wander are the ones that are also least likely to respond appropriately to efforts by police and other unfamiliar adults to engage and assist them,” he noted.

While many are aware of the risk of wandering among children with development disabilities, the study authors noted there is little research about it. According to the researchers, this was the first study to report on the prevalence of elopement among school-aged children with ASD in the United States.

However, a previous study found that 49% of children among 1218 families surveyed by the Interactive Autism Network had tried to elope since age 4. In addition, more than 60% of parents said their concerns about wandering had prevented them from enjoying or attending activities outside the home.

In the previous study, researchers found that wanderers were more likely to have higher scores on the Social Responsiveness Scale, but lower intellectual and communication developmental scores.

For the new study, researchers gathered data from the CDC’s Pathways survey and follow-up phone calls to parents of more than 4000 children. About 3500 children were involved in the study, and ages ranged from 6 to 17 years.

The children were categorized into 3 groups:

  • ASD only (492 children)
  • Intellectual disability and developmental delay only (2085 children)
  • ASD and intellectual disability/developmental delay (924 children)

Seventeen children weren’t assigned to 1 of these 3 groups because their parents didn’t know whether their children had 1 or more of the developmental conditions.

The Children’s Social Behavior Questionnaire, which measures the patterns and severity of behaviors associated with ASD, was used to compare wanders with nonwanderers.

The researchers found that 26.7% of the children overall had wandered in the previous year, and in the majority of cases, they left from public places. Elopement estimates across the 3 groups ranged from 22.7% to 34.6%.

PLoS One

This elopement problem has become more evident in recent years, following reports of children with ASD who died or were injured in car crashes, drownings, or other accidents.

“Elopement may place a significant burden on affected families by causing anxiety and increasing the need for monitoring and supervision,” the study authors noted.

Through their research, the study authors also discovered:

  • Children with ASD only and those with ASD and intellectual disability/developmental delay were more likely to wander than those with intellectual disability/developmental delay only.
  • Parents of children with ASD and intellectual disability/developmental delay were more likely to use physical or electronic measures to prevent wandering.
  • Parents reported using more physical barriers (eg, fences, gates, locks, alarms) than electronic tracking devices.
  • Children between the ages of 6 and 11 years were more likely to have wandered than those aged 12 to 17 at the time of the Pathways interview.
  • Children who wandered scored higher on 5 of 6 subscales on the questionnaire, meaning they had more severe ASD symptoms. Wanderers also: Were more likely to not realize when there was danger. Were more likely to have difficulties distinguishing between strangers and familiar faces. Showed greater propensity for sudden mood changes. Were more likely to “overreact,” get angry quickly, and get lost easily. Were more likely to panic in reaction to change.

“Addressing this complex issue will likely require multidisciplinary collaboration among researchers, clinicians, advocates, parents, educators, first responders, and others,” the researchers concluded. “Ultimately, it is hoped that a better understanding of the prevalence and correlates of elopement will help to reduce the morbidity and mortality associated with this common phenomenon with potentially tragic consequences.”