Sunday, May 26, 2013

Autism and Wandering: A Safety Crisis

With the Memorial Day holiday weekend marking the traditional start of summer, many families look forward to outdoor activities, including barbecues, swimming, and vacations. For many parents of children with autism, however, the beginning of summer brings increased responsibilities and a need for greater supervision. Aside from the various issues children with autism face, a growing concern is the problem of their wandering, or elopement, away from safe places, such as home, to dangerous places, including busy streets, railroad tracks, and bodies of water. Despite parents’ concerted efforts to keep their children with autism safe, some of these children are master escape artists who can pick locks, wait until everyone is asleep, scale high fences, and/or run with abandon if given one moment’s chance to flee.

According to the National Autism Association, 49% of children with autism attempt to elope from a safe environment. Many of these children gravitate toward water, where they often drown if they are not found in time. This month the media reported drowning deaths of three children with autism in Ohio, California and Florida, as well as the recovery of a fourth child from a creek in Kentucky, all of whom had wandered from their parents, despite close supervision. Specifically, two-year-old Drew Howell became separated from his family during a vacation in Ohio and drowned in a river before he was found. In California, Mikaela Lynch, a nine-year-old girl with severe autism, wandered from her home and drowned in a nearby creek. While vacationing in Florida, eight-year-old Owen Black, another child with autism, wandered from his mother and was found drowned in the Gulf of Mexico.

In response to these recent tragic deaths by wandering and drowning, the National Autism Association has intensified efforts to make parents and the public aware of this critical issue, sharing information and warning parents to be especially vigilant during the summer months, a common time for children with autism to wander. This week the National Autism Association shared two excellent informative articles regarding wandering and autism. The National Academy Associate’s well-written cover story, “Searching for Children with Autism,” [To read this article, click here.] details not only the seriousness of wandering by children with autism but also the challenges presented in searching for one of these children who has strayed from a safe environment and the need for special training of law enforcement who may be called upon to search for these children. On Friday, USA Today published an article addressing the issue of safety for children with autism entitled “Protecting Autistic Children Starts with Community” [To read this article, click here.] highlighting the need for plans to be put into place, such as Project Lifesaver, to find children with autism who may wander and to protect them from danger.

While any child could wander away from home and need to be rescued, children with autism pose special difficulties that need to be conveyed to anyone involved in a search for these children. In addition to their tendency to wander, many children with autism are nonverbal or have limited language skills. For example, even after years of speech therapy, Alex, who is 21 years old, may not be able to covey his name, address, and phone number clearly to first responders, should he become separated from Ed and me. Also, many of these children have sensory issues in which they overreact to loud noises, bright lights, being touched, or the confusion that may surround an incident in which they have wandered. Moreover, some people with autism, like Alex, have anxiety issues in which their primal instinct of “fight or flight” would engage, making them aggressive toward first responders in a crisis or causing them to continue running away from a falsely perceived threat of strangers trying to help.

Thankfully, Alex seems to have a healthy dose of fear, especially around bodies of water, and has never tried to wander away from us. When he was younger, we took him to swimming lessons, but like his parents, he remains a rather poor swimmer who realizes his limitations in the water. Because he doesn’t like getting water in his eyes, he prefers to stay on dry land. He also has a fear of heights that would likely keep him from climbing a fence designed to keep him contained. In addition, his poor fine motor skills help keep him safe because he cannot undo locks easily, preventing his escape from the house. (In case of a fire, we know that we would have to make sure he escaped from the house safely with our help because of his limitations.) Nonetheless, Ed and I keep constant watch over him, especially when we are away from home, never completely trusting that Alex could wander away from our safe supervision into a dangerous situation.

To protect their children with autism, parents must not only be aware of the prevalence of wandering behaviors but also take steps to prevent their children from getting into dangerous situations. For example, the National Autism Association recommends five inexpensive and simple safety tools: window and door alarms, portable and secure Guardian locks, stop signs posted at home exits as visual cues for children, and for safety in public places, identification information posted on shoe tags or temporary tattoos. [For more information on these recommended safety tools, please click here.] In addition, the National Autism Association offers the Big Red Safety Toolkit, an excellent resource to help parents work with the community to keep children with autism safe. [For more information about the Big Red Safety Toolkit, please click here.] Within communities, parents may need to work with law enforcement officials to develop plans and programs for training first responders how to deal with people with autism as well as developing GPS tracking for children with autism known to wander. With the rapidly increasing numbers of children with autism, as currently reported at 1 in 50 school children with autism, and the statistic that nearly half of them have a tendency to wander, the issue no longer becomes a matter of if a child with autism will need to be rescued but when this crisis may occur. The recent deaths of three precious children remind us that we must continue to work to protect those children who are especially vulnerable and pray that God will keep them safe.

“Turn Your ear to listen to me; rescue me quickly. Be my rock of protection, a fortress where I will be safe.” Psalm 31:2


marjorie said...

this piece is such good service journalism, pam. thanks.

Karen said...

Wonderful, informative and life saving piece, Pam. Thank you for bringing more attention to elopement, and offering helpful links and ideas. I am blessed to have your support in a cause that will save lives. It takes moms who understand to pave the path for imperative changes!

Pam Byrne said...

Hi Marjorie,
How nice to hear from you--hope you are doing well! :) I appreciate your kind comment, and I hope to bring greater awareness to this topic.

Pam Byrne said...

Dear Karen,
Thank you for your sweet note and for the work you are doing to help children with autism that has inspired me, especially when I think about your precious child's safety. I believe that we were called together to do something good, and I'm looking forward to seeing what we can accomplish!