Autism and Wandering and How to Prevent It
by Leslie Cawley
Children with autism present unique challenges to their parents and caregivers, like most children with special needs. Once such challenge is known as “elopement”. Autistic children tend to get overwhelmed in various situations and seek respite in more quiet places. The effects on those who care for them can be quite stressful, leading to anxiety and the fear of not being able to go out into the community. A recent study suggested that there are a variety of reasons that autistic individuals walk away. The reasons varied from just wanting to get away from overwhelming situations (crowds) to wanting to go to a favorite destination, and just to explore. The wandering and elopement survey found that approximately half of parents with children with autism report that their child elopes, with the behavior peaking at age four. The article goes on to say that nearly half say that their child went missing long enough to cause significant concern about safety. (www.ianproject.org)
Autistic children don’t really know fear. They appear calm and collected like my son Joshua on the day he decided to go school on a Saturday morning. Emerging from another room, I noticed that he was not in the house. The front door was open and there was no Joshua. He didn’t answer when I called his name. My husband drove around the neighborhood looking for him. Talk about imagining the worse! Here is this innocent, non verbal, (for the most part) child, out walking around with nothing to defend himself. Well, someone who was in the neighborhood
did find and bring Josh home. A huge sigh of relief and anxiety were lifted off our shoulders and minds. Concerns about elopement are a constantly on the minds of both parents and caregivers. Stories about children with autism wandering off have emerged in the newspapers some with happy endings and others not so happy. Tragedies where children have died because they were interested in something new and different such as a creek are gaining the public’s attention. (For more info please logon onto: www.awaare.org Wandering is a “constant problem” according to Jan (not her real name) with her eleven year old son who is like most children “inquisitive” and “always on the go” like many autistic children who get bored if left with nothing to do. When one’s child does venture farther than the specified safe area, parents can become frightened and almost paralyzed in their thinking of taking their loved one out in public situations. Will he run off again? Will she be nearby when I call her? What if someone tries to take my son or daughter? Very legitimate fears, but they can be dealt with. For Jan, the use of visual cues placed throughout the house help remind her son that wandering is not an option. She says “I talk with him regularly about safety concerns when he wanders giving examples of what can happen, and my rules about wandering and telling others where he is going.”
There are autistic children who can’t be reasoned with because the ability to understand why one can or can’t do something just isn’t part of their logic. My son is one of those children. He understands cause and effect, and that’s as far as his reasoning reaches. For Jan, reasoning helps her son understand why it’s not safe to leave. While there are those who can understand the dangers of wandering, there are many more who just can’t understand the concept. Girls and boys with autism don’t always understand that they can’t talk to strangers, can’t walk away and go someplace new without an escort. They, like anyone else, are curious and want to see what’s out there, examine the new and unfamiliar so they learn a little bit more. For Kevin, who has a seventeen year old daughter with autism, is at a disadvantage. He says,” Unfortunately we don’t have the ability to communicate to her the dangers of this type of behavior due to her lack of communication skills.” His daughter has the mental capacity of a two year old. His solution? After finding their daughter “playing in the back of a neighbor’s pickup truck”, they made some “adjustments to the security system to prevent this from happening in the future.” We changed the locks on our front door as well and informed Joshua that one doesn’t go to school on Saturdays.
Parents and caregivers can’t let their guards down when it comes to protecting their loved one from leaving the premises. Changing the locks on the doors, reasoning, and even visual cues can be helpful in minimizing the risk that wandering will occur. What else can parents and caregivers do? There are available resources to parents: The Autism Society of America and their local chapters, certain web sites such as awaare.org, for the organization called Autism Wandering Alerts Response Education offers numerous safety tips in the form of “Safety Materials”. Examples of these are First Responder Alert Form in which vital information is recorded about the child that can be used to locate them should they end up missing. Another is the Autism-wandering prevention brochure, which provides advice and web sites for on minimizing the risk of wandering. Each form can be downloaded from the web site. GPS, global positioning system, is an electronic system using a network of satellites to indicate on a computerized receiver, is one way that parents can keep track of their child’s whereabouts. A website called lifeprotekt.com sells GPS watches that can be worn, with software that can be downloaded onto one’s computer as well as Smartphone. This device gives parents control over how far their loved can go before an alert is sent via email or text message. LifePROTEKT partners with safety officials in the communities in order to aid the search of a missing child. And by working with local law enforcement officials on understanding the characteristics of autism, a better treatment of our children and young adults can be in place when found.
The idea behind GPS technology is to help the parents feel safer when out in public or even at home, knowing they have the ability to control where their son or daughter goes. Companies such as LifePROTEKT can also help in locating a runaway teen or wandering adult. They also work with various organizations for those with autism and other special needs such as Alzheimer’s. For the younger children, say toddler and preschool, another company, Kidsafeinc.com, provides a cute device called MyChildID, produced by AmberAlert.com. The elephant shaped tracking device holds vital information about one’s child, including medical, emergency contacts, and a description of the child themselves. The device can be updated as needed so that the information is current for anyone who happens to see the little one far from home. Both devices give a measure of control to the parent, but the device that
LifePROTEKT provides is one that can be used with all ages and is not limited to a particular market.
Measures are being taken to study why children and adults with autism tend to walk away from their familiar surroundings. According to an article published by Eureka Alert! (www.eurekaalert.org), “a new diagnostic code for individuals with autism” is being established. The code, ICM-9-CM, will provide much needed information on why autistic individuals engage in wandering behavior. The article goes on to say that two major advocacy groups are collaborating together so that researchers can better understand this dangerous behavior: Autism Speaks and The Interagency Coordinating Committee. As Chief Science Officer for Autism Speaks, Geraldine Dawson, Ph.D. points out, “We need to better understand the scale of the problem of wandering and develop ways of preventing it. At the same time, we need to respect the essential freedom for independence in daily life for people in the autism community.” True, hindering one’s choices in their daily life can be disabling and potentially harmful to the development of that particular person. Being a part of the community is essential to the learning process for someone who is normally not so interactive. Learning proper behavior, to identify street signs, to order something from a menu, etc… And to just be comfortable among the crowds that they will encounter.
Low tech steps parents can take to keep their children safe are to wear identical colored shirts while on an outing so that everyone in the group can stand out. The use of line drawings to help illustrate why leaving mom and dad or other caregiver can help reinforce the idea that staying with loved ones is better than getting lost. Still another idea is to make them aware, if they can understand, the symbol for “Safe Place” should they get lost, and know that they can stay put until someone they know arrives to take them safely home. Law enforcement officials and other safety officials in the community need to be educated on what autism is and how to respond someone who is autistic so that they can take proper care of them while contacting loved ones to pick them up. Even business owners need to be aware know that just because our children are different does not make them strange, or bizarre, they just happen to be extra special and maybe a bit extra curious about the world around them. Exploring is part of learning and that’s just want they should do … only with a watchful shadow nearby.
- Author’s note: You can also contact your local Autism Society and the Autism Society of America (www.autism–society.org)