In the past few years there has been a great deal of discussion on wandering and autism. Wandering as in elopement, running away, leaving a home or group. With people who are not independent this can obviously be a dangerous situation.
The U.S. Interagency Autism Coordinating Committee (IACC) had much discussion on wandering. The previous IACC had a Subcommittee on Safety and provided HHS Secretary Sebelius with a letter on the subject. One hot topic was whether a medical code should be created to track wandering as there was little hard data on the topic.
One result of this discussion was a study to answer: how prevalent is wandering? Anecdotally we knew the answer was going to be that there is a high prevalence. Now there are numbers to back that up from a study published in the journal Pediatrics.
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.
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.
Usually with papers like this I try to obtain a copy in advance to review when it is released. last week and this week are too busy for that. The Autism Science Foundation blog has a discussion of the paper in New Study Confirms Autistic Wandering is Widespread. Autism Science Foundation president Alison Singer was one of the forces behind getting this study accomplished, along with Lyn Redwood of SafeMinds and there was support from the National Autism Association and Autism Speaks.
Often on such high profile papers, the full paper is made available to the public. Apparently not in this case.
By Matt Carey