NEW ORLEANS – Nearly half of all children with autism spectrum disorder wander off from safe supervision at some point in their childhood or adolescence, reported Paul Lipkin, MD, at the annual meeting of the American Academy of Pediatrics.
Though such behavior is developmentally normal in toddlers, it’s rarer for older children to leave a supervised, safe space for a longer period than just running away for a bit, he said.
Far more than an inconvenience, wandering, also called elopement, puts these children at high risk for injury or victimization. In fact, statistics from a survey by the National Autism Foundation suggest that nearly a third of autism-related wandering cases resulted in death or serious enough injury to require medical attention, said Dr. Lipkin, an associate professor of pediatrics at the Kennedy Krieger Institute and Johns Hopkins Medicine in Baltimore.
“Drowning is overwhelmingly the main cause of death in children with autism,” he said, sharing the data from National Autism Association, which relied on parent report and media reports. In that data, 71% of deaths from autistic children who wandered from 2011-2016 were drowning, and of those deaths, 76% of the drownings occurred in a natural body of water or drainage water. At a distant second, 18% of deaths were traffic accidents. The remaining causes were being hit by a train (4%), hypothermia or hyperthermia (3%), falling (1%) or other trauma (3%) (J Autism Dev Disord. 2019 Mar 5. doi: 10.1007/s10803-019-03961-x).
Academic research has found similar statistics to those from the National Autism Association. In one study, 53% of autistic youth who attempted to run off succeeded and were missing long enough to cause safety concerns (Pediatrics. 2012 Nov;130[5]:870-7). Among these youth – representing about a quarter of all families surveyed in the study – the police were called in 31% of cases. In addition, 65% had a “close call” with a traffic injury and 24% had a close call with drowning.
The children wandered off in various settings, including home; another’s home; a store or other public place; or school, daycare or camp. A 2019 study found that 70% of parents reported their children wandering off from home at least once in the past 2 years (J Autism Dev Disorders. 2019 Mar 5; doi: 10.1107/s10803-019-03961-x).
Although most cases occur in children and teens, with the highest rate of death among children aged 5-9, the National Autism Association has received reports of wandering occur throughout autistic people’s lifetime.
Yet this issue doesn’t appear to be on the radar of many pediatricians, and those who are aware of it may not know the best strategies to share with parents to prevent wandering and subsequent injury, Dr Lipkin explained. In one study, only one-third of parents reported receiving guidance from a health provider related to wandering (J Dev Behav Pediatr. 2018 Sep;39[7]:538-46).
That research found that only 10% received advice from a pediatrician or other primary care provider, 12% received advice from a developmental pediatrician or neurologist and 10% received advance from a psychologist or psychiatrist. The largest source of guidance in that study was autism advocacy organizations, whom 22% of parents cited. Others included a teacher or other school staff member (15%), a personal contact (13%), law enforcement (8%) or another source (1%).