Role of the pediatrician
Pediatricians have an important role to play in prevention of elopement, Dr Lipkin said. They can screen autistic patients for wandering and elopement during visits, work with community stakeholders such as schools and law enforcement, advocate for awareness, and provider education and resources for families.
Perhaps the most valuable resource, he said, is the Big Red Safety Box, available from the National Autism Association. This resource, sponsored by more than a half dozen autism advocacy organizations, includes three digital safety toolkits: one for caregivers, one for first responders, and one for teachers. Parents can therefore share the toolkits for first responders and teachers with those respective community members.
Pediatricians can also help families develop a Family Wandering Emergency Plan (FWEP), a template for which is in the Big Red Safety Box. Parents and community members should know the steps to take if someone wanders: Stay calm, call 911, search nearby water first and then implement the FWEP.
It’s first helpful to understand why these youth wander off. In the National Autism Association survey, the most common reasons were to escape an anxious situation, particularly for those with Asperger’s, or simply to run, explore, or go to a favorite place, particularly among those with autism or pervasive developmental disorder-not otherwise specified (PDD-NOS).
Researchers have found similar reasons: 43% of elopement situations occurred when children were trying to escape an anxious situation, 39% left while in a stressful environment, and 24% were in an environment with conflict, found one study (J Autism Dev Disord. 2019 Mar 5. doi: 10.1007/s10803-019-03961-x).
Sensory overload was also a trigger, with 38% of elopements occurring when it was too noisy, and 34% when it was a generally uncomfortable sensory experience. Just over a quarter (27%) of children left when they were understimulated or in a “boring” environment, Dr Lipkin reported. The remaining reason was goal-directed: 27% left to pursue a special interest, 18% sought a place where they enjoyed playing, and 11% were after their favorite food.
Prevention Strategies
Most data about effective strategies to prevent wandering comes from research that relies on parents, Dr Lipkin said. In general, environmental interventions tend to be the most effective, and medication tends to be the least effective.
One study on elopement prevention found that 96% of caregivers use at least some type of intervention, and the vast majority (83%) were using environmental interventions such as dead bolts (51%), latches (49%) and gates (36%). An equal proportion used behavioral services (83%), such as a behavioral psychologist (41%), social stories (40%) or an aide (39%). Just under a third used an ID bracelet or shoe tag (31%), and 19% used GPS trackers, according to Dr. Lipkin.
Although parents reported environmental interventions to be very effective, 68% said they were highly burdensome, though the median cost over 2 years was less than $1,000. The least expensive intervention was home behavioral specialists (when covered by insurance) and school aides, and the most expensive and burdensome – albeit highly effective – was a service animal.
Interventions with the least cost effectiveness included security cameras and GPS trackers, which only 15% of parents reported as being effective.
Although nearly half of parents reported their child had taken any psychiatric medication (48%), only 16% had taken medication explicitly to prevent wandering. Few reported the medication was very effective, however. Among the small number who did (less than 10), lorazepam, diazepam and atomoxetine appeared best.
Teaching children survival skills, as developmentally appropriate and possible, can also help. These include swimming lessons as well as learning how to interact in traffic, knowing their home address, and learning how to navigate around their neighborhood.
Dr. Lipkin no disclosures and used no external funding for this presentation.