Approximately 48% of children diagnosed with autism have been reported to elope at some point in their lives, frequently from places that are considered the safest environments for them to be in, such as homes and schools. People who elope place themselves in harm’s way and increase their risk of death (e.g. traffic accidents and drowning) by at least twice the rate of the general population (Anderson et al., 2012; Shavelle, Strauss, & Pickett, 2001).
It is no surprise that the risk of these behaviors can be a great source of anxiety for parents and families. Among parents of children that elope, 62% reported that they forego participating in activities outside the home out of fear of a wandering incident (Anderson et al., 2012). Whether families choose to stay home for safety reasons or to avoid the misjudgment of bad parenting, this behavior can decrease a family’s network of social supports over time.
Yet, when children do go missing, neighbors are mobilized to help with the search over 50% of the time (Anderson et al., 2012), followed by police officers and school personnel. Thus, it is important not only for parents to have a support system, but also to learn how their children can successfully interact with first responders (e.g. neighbors, police officers, teachers, and caregivers). To begin this process, it is crucial to implement a number of prevention measures in the event a crisis arises. The following tips are excerpted from A Guide to Safety, a free resource published by the Organization for Autism Research.
Identify and Address the Cause
To start, it is important to recognize why children with autism elope. Most times, their eloping behaviors are goal-oriented. Individuals with ASD tend to run around excitedly, explore, or seek out places they enjoy, whereas those with Asperger Syndrome tend to feel anxious before running away to avoid an unpleasant experience (Anderson et al., 2012).
Parents should be proactive by gathering information on the challenging behavior exhibited by their child. Track the ABCs (antecedents, behaviors, and consequences) of eloping incidents in order to predict and prevent problems before they arise, and to mitigate potential crises in the future. It is important to collect specific data, such as dates, times, duration of event, and environments. Once enough data is collected, assess the underlying cause before implementing a behavior intervention plan. The goal is to replace elopement behaviors and limit the triggers that evoke the behaviors in the first place.
Create a Safety Network
Once a family is ready to implement a behavior intervention plan, it is time to create a safety network. Having a safety network is not only helpful, but also necessary in many cases. Because neighbors are most commonly directly or indirectly involved in searches, it is critical to share information about your child’s wandering incident with them. Along with neighbors, a safety network may also include teachers, caregivers, coworkers, and law enforcement personnel.
A key prevention measure then is to inform the safety network that a person with autism lives in the area and may not respond to communication cues. Make sure your network is knowledgeable about your child’s needs, interests, and challenging behaviors. Some people may be unfamiliar with autism and wandering incidents, so it is important to inform them about this issue and how they can help. This is particularly important if the child who wanders does not respond when their name is being called. Children who do not respond to their names are not only more likely to exhibit eloping behaviors (Anderson et al., 2012), they are also more challenging to find during searches. By sharing information about your child, you are arming your safety network with important knowledge.
Another prevention measure parents can take is to prepare a document, maybe even an annotated Google map that identifies all the possible locations their child may go based on past history and known interests. Make sure that there are enough copies of the document to immediately issue to the safety network should the child wander again.
Work with Law Enforcement Personnel
Law enforcement personnel play a central role in a family’s safety network. Visit police stations and fire departments with the child so that he or she can become familiar with their uniforms and how to interact with them. At the same time, inform these agencies of the child’s special needs, how they must be addressed, and anything else that might be useful to know in a wandering incident. For example, if the child has a favorite song, let the agencies know in case playing it might help draw the child.
It is also important for them to know whether the child has any sensory issues like an aversion to loud sirens or difficulty with bright lights. It is also a good idea for parents to provide their personal contact information in the event a law enforcement officer sees their child in a concerning location in the community
In anticipation of eloping incidents, register a child’s information with local law enforcement and public safety offices. Some 911 call centers also offer the option of registering a child with special needs. If parents are able to submit information about their child, that information will be readily available should a wandering incident necessitate a search. Parents may also choose to set up an “in-service” training module that addresses the issues both parents and law enforcement personnel may face in the event of a missing child call.
Adult Elopers and Self-advocates
For some families, elopement can be a life-long concern. Adults who are severely impacted by autism may continue to elope from the safety of their homes (Matson, Rivet, 2008), which stresses the importance of increasing awareness and preparation among community members, as well as finding sustainable solutions among primary caregivers.
Self-advocates who are less impacted by autism and are able to advocate for themselves face different challenges. It is critical for self-advocates to understand that police officers and first responders may not know anything about autism, and may attribute any unusual behaviors or nervousness with suspicion. Prevention strategies can be used to avoid any major misunderstandings. One way is for self-advocates to get to know local law enforcement agencies. The more sensitive law enforcement personnel are with disability needs, the more successful they will be in serving and protecting everyone in the community.
Knowing when and how to disclose the diagnosis in emergency situations is also good practice. Having a disclosure statement ready and even an ID card can be useful in the event of an emergency. Role-play a scene to practice specific behaviors (e.g. pulling out the ID card slowly).
Spread the Word
For parents and self-advocates alike, addressing wandering and preventing emergencies is critical, and learning how to engage the community for this purpose is the first step for addressing these concerns. Knowing the facts about wandering incidents and learning how to prevent and address a wandering occurrence with first responders is essential for parents to keep their children safe. For self-advocates, knowing how to communicate with local law enforcement personnel is crucial to avoid major misunderstandings in emergency situations. Although the reality may seem overwhelming at times, there are supports in place to help keep our loved ones safe. Sharing knowledge, best practices, and community resources can make the difference should an emergency event arise.
Michael V. Maloney, MA, is the Executive Director of the Organization for Autism Research (OAR). To learn more about OAR and its autism safety initiative, visit http://www.researchautism.org or email oar@researchautism.org.
References
Anderson, C., Law, J., Daniels, A., Rice, C., Mandell, D., Hagopian, L., & Law, P. (2012). Occurrence and family impact of elopement in children with autism spectrum disorders. Pediatrics, 130(5), 130—870.
Matson J. L., & Rivett T. T. (2008). Characteristics of challenging behaviors in adults with autistic disorder, PDD-NOS, and intellectual disability. J Intellect Dev Disabil, 33(4), 323—329.
Shavelle, R. M., Strauss D. J., & Pickett J. (2001). Causes of death in autism. J Autism Developmental Disorders, 31(6), 569—576.
