Prevention of Elopement-Related Injuries in Children with ASD

Background:  Elopement behavior (EB), sometimes termed “wandering”, is emerging as a significant contributor to morbidity and mortality among individuals with Autism Spectrum Disorder (ASD). Causes of death among individuals with ASD who elope include drowning and traffic accidents. Prior investigations have established a high rate of elopement among children with ASD, ranging from 26%­49%. To prevent elopement-related injury and death, parents implement a wide variety of environmental, behavioral, electronic, and pharmacologic interventions. What is not known, however, are the relative costs, effectiveness, burdens and side effects of these interventions among children with ASD.

Objectives:  To assess caregiver responses to EB among children and adolescents with ASD and co­occurring disorders such as ID, ADHD, and Language Disorder, as well as their perceived costs, effectiveness, and burden of use.

Methods:  Parent participants in the Interactive Autism Network (IAN) — a large, validated and verified, internet-mediated, parent-report autism research registry — were invited to complete a survey about their children with ASD ages 4 or older. Inclusion criteria were survey completion, professional diagnosis of ASD, confirmatory Social Communication Questionnaire score of >=12, Social Responsiveness Scale score, and completed birth and diagnosis questionnaire. Survey items included past and current patterns of EB, consequences of the behavior, parental responses and interventions attempted to prevent the behavior (including medications) or harmful outcomes, their perceived effectiveness, burden of use, and estimated costs.

Results:  Caregivers mobilize community resources including neighbors, school personnel, and police during elopement incidents. Caregivers were nearly twice as likely to receive advice on managing elopement from an ASD advocacy organization (22%) as a physician (12%), and 44% received no advice or guidance from any source. Caregiver strategies to prevent EB and negative consequences included a variety of physical, electronic, and behavioral interventions. Many environmental interventions such as locks, door alarms, security systems, and fencing were rated as highly effective. Security systems were rated as highly effective but more expensive, while GPS trackers were rated as less effective and more burdensome. Aide services were rated as highly effective but generally provided through insurance, school, or local agencies rather than being paid for out of pocket. A variety of medications administered specifically to reduce EB or for other disorders were generally rated as ineffective in reducing EB and parents reported significant rates of side effects.

Conclusions:  Caregivers use a variety of intervention strategies to prevent EB and related injuries and death in youth with ASD. Environmental and behavioral interventions are generally rated as much more effective than medications in reducing EB. Clinicians should screen for elopement behavior in children with ASD and advise the use of inexpensive, easy to implement interventions such as locks, door alarms and dead bolts for children who elope. GPS tracking devices may be effective in some patients but more expensive and burdensome. Caution is indicated when prescribing medications off-label to reduce EB given parental reports of their poor effectiveness and side effect burden. Further study of interventions to prevent EB including their associated costs, effectiveness, and burden of use is indicated.