OBJECTIVES: Anecdotal reports suggest that elopement behavior in children with autism spectrum disorders (ASDs) increases risk of injury or death and places a major burden on families. This study assessed parent-reported elopement occurrence and associated factors among children with ASDs.The New York Times reports on the study:
METHODS: Information on elopement frequency, associated characteristics, and consequences was collected via an online questionnaire. The study sample included 1218 children with ASD and 1076 of their siblings without ASD. The association among family sociodemographic and child clinical characteristics and time to first elopement was estimated by using a Cox proportional hazards model.
RESULTS: Forty-nine percent (n = 598) of survey respondents reported their child with an ASD had attempted to elope at least once after age 4 years; 26% (n = 316) were missing long enough to cause concern. Of those who went missing, 24% were in danger of drowning and 65% were in danger of traffic injury. Elopement risk was associated with autism severity, increasing, on average, 9% for every 10-point increase in Social Responsiveness Scale T score (relative risk 1.09, 95% confidence interval: 1.02, 1.16). Unaffected siblings had significantly lower rates of elopement across all ages compared with children with ASD.
CONCLUSIONS: Nearly half of children with ASD were reported to engage in elopement behavior, with a substantial number at risk for bodily harm. 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.
“I knew this was a problem, but I didn’t know just how significant a problem it was until I really began to look into it,” said Dr. Paul A. Law, senior author of the study and director of the Interactive Autism Network, a registry that is a project of the Kennedy Krieger Institute in Baltimore. “This is probably one of the leading causes of death and morbidity for kids with autism.”
Advocates for families affected by autism say the findings underscore the need to raise public awareness and alter policy. While Amber alerts are used to mobilize the public when a child is believed to have been abducted, for instance, generally they are not used when a disabled child goes missing, said Alison Singer, president and a founder of the Autism Science Foundation, one of the organizations that supported the study.
Emergency responders should receive special training on how to search for autistic children who are nonverbal and often scared by lights and sirens, she said. Emergency personnel also need to know to check streams or ponds, since many children with autism are drawn to bodies of water, as well as highways.
The idea for the new study came from a family coping with autism, and it was financed by several advocacy organizations. Researchers surveyed families who had a child with autism or a related disorder between the ages of 4 and 17.
Most of the respondents came from 1,098 of Interactive Autism Network’s most active participants, 60 percent of whom completed the survey. Families who chose to participate knew the survey was about wandering, and those coping with wandering children may have been more likely to respond, skewing the results, Dr. Law acknowledged.