I have written before in this space about special needs children, including children with autism. This week I want to turn my attention to one aspect of autism – wandering – and some of the ways parents and schools are trying to keep kids safe. Wandering is something I really had not heard of before, but I’ve since learned that it is a serious danger to children with autism or other cognitive deficits. It is also a major source of stress to parents who are constantly worried about their child wandering off.
All children have a tendency to wander away from their parents at times. When my daughter was two, I lost her at Sports Authority. I thought she was standing right next to me while I was looking at something, then I looked down and she was gone. After a few frantic minutes – and with the quick help of the store employees – we found her all the way on the opposite side of the store looking at balls. She was perfectly fine, but it was terrifying for me.
For reasons that are not well understood, children with Autism Spectrum Disorder (ASD) tend to wander more than non-autistic children. As reported by the Child Mind Institute and others, a recent study by the Interactive Autism Network has finally tried to quantify what has traditionally been more anecdotal evidence about wandering.
According to the responses from more than 800 parents, roughly 50 percent of children between the ages of 4 and 10 with an ASD wander at some point, four times more than their unaffected siblings. The behavior peaks at 4, almost four times higher than their unaffected siblings, but almost 30 percent of kids with an ASD between the ages of 7 and 10 are still eloping, eight times more than their unaffected brothers and sisters.
Autistic children seem to wander for two basic reasons. One is to find something they like, such as their favorite pond or playground; and one is to get away from something they don’t like such as a stressful school environment. It’s not really running away, at least as that term is usually used to describe a child who decides to leave home because of some real or perceived injustice at home. A majority of parents in the study described their child as happy and focused when they wandered off. It is usually a matter of the child being drawn to something that he or she likes. One child referenced in the Child Mind story had a fascination with exit signs. One day at school, the boy wandered off through the woods toward the highway to find his favorite exit sign. Thankfully, a good Samaritan picked-up the boy and returned him to where he belonged.
The danger for children is very real. While concrete statistics are difficult to come by, drowning seems to be the biggest danger (there are some who believe that autistic children are drawn to water). Children can also wander into traffic. Of course, when any small child wanders alone there is the risk of getting lost or being abducted. To further complicate matters, thirty-five percent of families in the study reported that their child is never or rarely able to communicate basic identifying information such as name, address and phone number. This obviously makes it harder for a wandering child to get back home. Even older or more high-functioning children may – due to their social anxiety – be reluctant to seek out help or cooperate with someone who is trying to intervene.
Wandering represents a challenge to schools because it can be very difficult to monitor a child all day long, especially during class changes and recess. The problem, however, also occurs at home. Wandering occurs not just during the day; night-time wandering is an especially big fear for parents of autistic children. Some children have been known to get up in the middle of the night, undo the deadbolt on the front door, and walk-off into the night. The terror of finding your child gone in the middle of the night is unimaginable. Some parents have installed deadbolts higher up on the doors, some have installed alarms that go off if the door is opened. Some parents have gone so far as to have their children wear tracking devices that send out a signal that can be pin-pointed. While all of these techniques can help, there are no sure-fire methods of preventing wandering. It is a constant worry for parents.
The autism community has taken action by getting the Center for Disease Control’s safety subcommittee to assign a specific medical code for wandering, which will be in conjunction with the diagnosis of ASD. By doing this, it is hoped that doctors will more readily recognize wandering as a legitimate diagnosis that they can address with the parents or other caregivers (the new code applies to adults with ASD as well). The American Academy of Pediatrics is also preparing a fact sheet to educate doctors on the topic so that they can better work with parents to try to reduce the incidence of wandering. The new code may also make it easier for parents to seek reimbursement from their insurance companies for alarms and tracking devices, and it may make it easier for parents to argue to their schools that a one-on-one monitor is needed as part of the child’s Individualized Education Plan (IEP). The new code takes effect in October 2011.
Lori McIlwain, Chairwoman of the National Autism Association, recently discussed how to deal with wandering:
The best overall strategy is a multi-tiered approach, which includes educating the child about safety and dangers using whatever means of communication works, including social stories, language and/or visual prompts. It’s also important that caregivers—and schools—work to understand what is causing, or contributing to, the wandering or bolting behaviors so that any triggers may be addressed or eliminated.
Have any of our readers had any experience with wandering? I’d like to hear your stories as to how you deal with it and how it affects your life.
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Photo courtesy of: Issueswithautism.com