What to consider when keeping children with autism spectrum disorder safe from getting lost.
Wandering is a fairly typical occurrence in many children’s lives and many parents can probably recount at least one heart-stopping time when they were unable to quickly locate their son or daughter. However, for parents with autism spectrum disorder (ASD), wandering isn’t just something to be concerned about during the early days of a child’s mobility, nor is it an uncommon experience. At the virtual 2020 American Academy of Pediatrics National Conference & Exhibition, Paul Lipkin, MD, FAAP, associate professor of pediatrics at the Kennedy Krieger Institute and Johns Hopkins Medicine in Baltimore, Maryland, presented “The dangers of autism: Safety and the wandering child,” which touched on the serious nature of such wandering.
Lipkin began the session by defining what wandering or elopement is: a dependent person leaving a supervised, safe space for more than a brief period of running away. He emphasized that wandering is considered developmentally normal for toddlers. He then shared a number of stories of children with autism spectrum disorder who had wandered, many ending with the child’s death. Since 2011 there have been over 1500 cases of missing or found missing cases involving a person with autism spectrum disorder and over 200 reported fatalities. Roughly a third of all autism spectrum disorder-related cases of wandering ended in death or requiring medical attention. Every month there are roughly 20 cases of wandering and 2 or 3 deaths a month. Among the cases that end in death, 71% occur because of accidental drowning and among those deaths 76% occur in either drainage water or a natural body of water. The greatest number of wanderings occur in children aged 10 to 14 years, but children aged 5 to 9 years had the greatest number of deaths and children aged younger than 5 years had highest risk of death, with cases resulting in death roughly 60% of the time.
To prevent wandering, parents use a number of tools including physical barriers such as dead bolts and gates; using the services of an aide or behavioral psychologist; or using a device such as a medical alert bracelet. Most families have used at least 6 different tools and consider the burden to be high. Many of these families are not getting help for the problem from their pediatrician and instead are turning to autism spectrum disorder advocacy groups, schools, and other parents who have a child with autism spectrum disorder. To take a more significant role in preventing injury or death due to wandering, clinicians should ask about and monitor a child’s behavior at every visit, work with agencies in the community to improve safety, advocate in the community and beyond for better safety, and provide education and resources to families. Lipkin shared the National Autism Association’s AWAARE (Autism Wandering Awareness Alerts Response Education) collaboration, which includes safety toolkits, as well as the Big Red Safety Box, which can be given to families and contains numerous tools to keep a child from harm.
About 50% of parents of autistic children > 4 years of age state that their child had either attempted or succeeded in running away.1 In two-thirds of these episodes a “close-call” with traffic occurred, and in one-fourth a “close call” with drowning occurred. In parents who had normal siblings along with the child with ASD, it was found that in the children aged 4-7 years, 46% of the ASD children wandered versus 11% of the normal siblings. In children aged 8-11, 27% of the ASD children wandered versus 1% of the normal siblings. This data demonstrates that wandering is more due to the nature of ASD rather than the parenting style.
Parents report several reasons their child wandered, including both positive factors, such as exploration, joy of running, but also negative reasons such as escaping anxiety-producing situations, loud noises, etc. Of great importance is how the wandering behavior can affect parents, such as causing stress, lack of sleep at night, and decreased satisfaction with activities away from home.
Sadly, if death occurs secondary to the wandering it is mostly due to drowning in three-fourths of children. This points out the need for private pools being surrounded by 4-foot fences and locked gates, as well as early swimming lessons. One interesting variation is to teach the ASD child to swim while fully clothed and with shoes on, which would duplicate real life circumstance.
—Dr Harlan R Gephart is on the Editorial Advisory Board of Contemporary Pediatrics and clinical professor of Pediatrics Emeritus, University of Washington School of Medicine, Seattle, Washington.
1. Anderson C, Law JK, Daniels A, et al. Occurrence and family impact of elopement in children with autism spectrum disorders. Pediatrics. 2012;130(5):870-877. doi:10.1542/peds.2012-0762