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Thursday, April 21, 2011

Autism Elopement Study: Preliminary Findings

IAN Research Report Elopement | IAN Research Reports | Interactive Autism Network Community | Share. Research. Discover.

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 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 The data have not been peer-reviewed -- that is, undergone evaluation by researchers expert in a particular field -- or been submitted for publication.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.

Preliminary Findings

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.

Line graph comparing children with ASD and their sibs: elopement by age

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)

Bar chart showing top 5 motivations for elopement behavior in ASD

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.

Read more at http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_elopement



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