IAN Research Report: Elopement and Wandering
People with autism spectrum disorders (ASDs) often “elope,” “wander,” or “bolt” from safe spaces. This behavior can be dangerous, and there have been many reports of fatalities, yet virtually no research has been focused on this subject.
Recognizing the urgent need for information and intervention, the Autism Research Institute, the Autism Science Foundation, Autism Speaks, and the Global Autism Collaboration partnered with the Interactive Autism Network (IAN) to create a national survey on elopement in ASD. So far, more than 800 families of children with ASDs from across the U.S. have completed the Elopement and Wandering Questionnaire launched on March 29, 2011. In this report, we share some initial findings, including the fact that nearly half of children with ASD between the ages of 4 and 10 engage in this behavior.
Preliminary results of this first ever investigation of elopement behavior in autism are shared to provide critical information for families, advocates, policy makers, and scientists. This is just a first look at such information, however, and we are continuing to collect elopement data from families of both children and dependent adults with ASD. You will notice that we are not yet reporting findings about dependent adults with ASD; this is because we have not yet collected enough data from families of adults, although we hope to do so in the future. Please encourage families of both children and adults on the autism spectrum to consider completing the Elopement and Wandering Questionnaire by participating in IAN Research.
Please Note: These Findings Are Preliminary
The analyses presented here by the Interactive Autism Network are preliminary. They are based on information submitted via the Internet by parents of children with autism spectrum disorders (ASDs) living in the United States who choose to participate. They may not generalize to the larger population of families affected by ASD. The data have not been peer-reviewed -- that is, undergone evaluation by researchers expert in a particular field -- or been submitted for publication. IAN views participating families as research partners, and shares such preliminary information to thank them and demonstrate the importance of their ongoing involvement.
What is Elopement?
The autism community uses many terms to describe the fact that children and dependent adults with ASD depart safe spaces to put themselves in harm’s way. A mother might say her son “is a runner” or that he “bolts” when they are in public places. A father might say his daughter “wanders” or “elopes." It’s difficult to name the behavior because we know so little about it. Is it aimless, or are these individuals trying to reach a place or person? Is it motivated by fear, sensory-sensitivity, boredom, or curiosity? Is the person who wanders scared, joyful, or in a fog? How many individuals with ASD engage in this behavior, and to what lengths are families going to keep them safe? Until now, there were few evidence-based answers to such questions.
For the purposes of the Elopement and Wandering Questionnaire analysis, we defined “elopement” as the tendency to try to leave safe spaces or a responsible person’s care at age 4 or older, beyond the toddler years when it is considered normal for a child to bolt from caregivers on a beach or in a store, or to leave the front yard and enter the street. Our goal was to find out how many individuals with ASD behave in a similar way, but far beyond the toddler years.
A Note About Our Sample
As of the date of this report, 856 parents had completed the Elopement and Wandering Questionnaire. Some of these parents were part of a pre-selected group who were asked to complete the survey, while others heard about the survey on their own and completed it due to their interest. For purposes of estimating how common wandering in ASD is, we will use only the pre-selected group’s responses. Why? Because this will reduce bias, scientifically speaking. (Families who completed the survey because they heard about it in the news, for instance, are more likely to be a group already interested in elopement because they have children who elope.)
Everyone’s responses to the survey will be used to address most other questions, like what motivates children’s elopement or when it tends to occur.
Based on responses to the IAN Elopement and Wandering Questionnaire, it is clear that roughly half of children with ASD between the ages of 4 and 10 attempt to elope. This rate is nearly four times higher than for the children’s unaffected siblings. Between ages 7 and 10, almost 30% of children with ASD are still engaging in elopement behavior, a rate eight times higher than for their unaffected siblings. These figures are especially sobering when 35% of families with children who elope report their children are “never” or “rarely" able to communicate their name, address, or phone number by any means.
It appears that the elopement rate decreases from a maximum at age 4 to a low during the teen years, but then increases again. Could it be that adolescents with ASD not only become more restless and inclined to wander, but also are more capable of making an escape? We do not yet know, but hope that more data from families of older teens and young adults will help to answer this question.
Of children with ASD who attempted to elope, nearly half actually succeeded and were missing long enough to cause parents significant concern about their safety. The situations were serious enough that 32% of parents in this situation called the police. Furthermore, two out of three reported their wandering child had a “close call” with traffic injury, and almost a third reported a “close call” with drowning.
One major question involves why individuals with ASD leave safe spaces. Are they escaping a demand, like a tedious classroom assignment, or a sensory assault, like a noisy school assembly? Are they headed someplace fun and interesting, full of anticipation, or aimlessly fleeing with no thought of where they are going, anxious and panicked?
We asked parents to choose from a comprehensive list of possible motivations they felt were behind their child’s elopement behavior. As shown below, the top five chosen were:
- Simply enjoys running or exploring
- Is trying to reach a place he/she enjoys (such as the park)
- Is trying to escape an anxious situation (like demands at school)
- Is pursuing his/her special topic (as when a child fascinated by trains heads for the train tracks)
- Is trying to escape uncomfortable sensory stimuli (like loud noise)
Motivations reported seldom included “Is trying to get favorite foods,” “Is fleeing something that frightens him or her,” or “Is trying to reach a certain person he/she enjoys.” Considering the social deficits associated with ASD, it is interesting to note that reaching a favorite place was one of the top motivations chosen, while reaching a favorite person was one of the least chosen.
We also asked what about a child’s state of mind while wandering. What did parents believe their child was feeling or experiencing while “on the run”? Children with ASD who wander, reported the majority of parents, are playful or happy and focused, with intent to go someplace or do something. Far fewer parents reported a child was anxious, sad, or “in a fog” when wandering.
Taken together, parents’ answers to these questions reveal that children with ASD who elope are often purposeful and perhaps exhilarated as they set out on their way. As we learn even more, we hope to be able to characterize types of elopement, and the best interventions for various types. Certainly, knowing why and how children bolt from safe spaces will help those striving to prevent this.
We also asked parents if there was any seasonal pattern to their child’s elopement behavior. Was there a peak time of year that this occurred? While 25% of families told us summer was the season elopement occurred most, the majority of families (67%) said there was no seasonal pattern at all.
Children with ASD have many behaviors that families find incredibly stressful, including self-injury, rigidity, aggression, and meltdowns. How did those whose children engaged in elopement behavior compare the stress involved to that caused by other challenging behaviors? More than half (57%) reported that elopement was the most, or among the most, stressful of ASD behaviors. Fear that a child would escape their home during the night disrupted sleep for more than 40% of these families. Likewise, fear of elopement kept 62% of such families from attending or enjoying activities outside the home, increasing social isolation.
Despite the difficulties families have faced, 51% reported they had never received any advice or guidance about their child’s elopement behavior from a professional, with only 14% receiving such advice from a pediatrician or other physician and only 19% receiving such advice from a mental health professional. Clearly, it is crucial that we develop supports and interventions for families coping with elopement behaviors in a child with ASD, and provide information to those community professionals who may receive appeals for help.
Using New Findings to Support Families
Preliminary results of the IAN Elopement and Wandering Questionnaire demonstrate that elopement behaviors are a major problem for approximately half of families with a child on the autism spectrum at some point between the ages of 4 and 17; that eloping children encounter significant dangers; and that families of elopers are often stressed and socially isolated. This data validates long held concerns of families and advocates regarding elopement and ASD. It also gives us our first glimpse into the motivations and states of mind of these children while they are “wandering,” a word that may not fit what parents report: children who are often happy, playful, and focused on a goal when they depart safe spaces.
The IAN Research elopement survey is ongoing, and open to all parents of children with ASD and guardians of dependent adults with ASD participating in IAN Research, the nation’s largest online autism research project. Register here, or spread the word.
We would like to express our thanks to all the families who have participated in the Elopement and Wandering Questionnaire so far, and to the organizations who generously provided funding for this effort: the Autism Research Institute, the Autism Science Foundation, Autism Speaks, and the Global Autism Collaboration.
- The Big Red Safety Box - a set of elopement/wandering-related resources from the National Autism Assocation
- AWAARE Collaboration - working to prevent wandering incidents and deaths in the autism community
- AWAARE Collaboration's Social Stories addressing Wandering
- Autism Speaks' Autism Safety Project
- Autism Society's Take Me Home program
- Project Lifesaver provides in-depth training regarding wandering behavior and tracking technologies to law enforcement agencies
- Examples of services available to help locate loved ones via "tracking" devices: EmFinders, LoJack SafetyNet, Care Trak