When New Jersey mom Suzanne Simon’s son Koray was 8 years old, he wandered unnoticed from the American Museum of Natural History onto the streets of Manhattan. Despite cold temperatures, he wasn’t wearing a coat, and he was soaking wet by the time law enforcement found him more than two hours later. Koray is a non-verbal child with an autism spectrum disorder. As many as 49% of children with autism are prone to wandering, says Heidi Mizell, resource coordinator for Autism Delaware in Newark, DE.
Wandering — also called elopement — is the tendency to try to leave a safe, supervised place, which puts a child with autism at risk of injury or even death. Kids can bolt away or simply leave a place undetected. “The only real difference is the speed,” says Rachel Tait, chief program officer for Eden Autism in Princeton, NJ. “The safety risk is the same,” she says. The potential danger involved with wandering arises because children with autism often have trouble with communication and safety awareness.
Why do children with autism wander?
“There are different reasons that kids might wander or elope,” says Mike Fogel, founder & director of the Child and Family Art Therapy Centers (right) in Center City Philadelphia, Ardmore, Paoli and Plymouth Meeting, PA. In many cases, they may want to move toward something that interests them or wander away from something that stresses them. Many kids with autism have hypersensitivity to sound or com- motion, and these factors could cause undue stress, says Fogel: “They may be trying to escape some frustration, and their coping skills aren’t up to the task.”
Dangers of wandering for a child with autism
Children with autism process only concrete things, and a concept like safety is too abstract for them, says Cindy Bott-Tomarchio, director of educational services for Eden Autism. The potential dangers when a child elopes include traffic, exposure, dehydration, hypothermia and encounters with strangers, but water is especially dangerous. Drowning is a leading cause of death among individuals who wander, says Mizell.
“People are drawn to the water. That’s why everyone vacations at the beach,” says Fogel. But children with autism seem to be more attracted to water than the average child, says Lori McIlwain, co-founder & chair of the National Autism Association. Experts have not identified a clinical reason for this behavior, but experts believe that water provides a sooth- ing sensory experience for the children with autism who seek it out. “Knowing to search water first saves a lot of lives,” says McIlwain.
Reduce the risk of elopement from home
“There is no substitute for supervision,” says Sue Tuckerman of Philadelphia, mom of 19-year-old twin sons with autism. Several devices — both low-end and high-end — can help you monitor your child, she says. Experts encourage multiple safeguards to keep the home secure. The most commonly used device is an alarm system that chimes when an exterior door opens. You also can put jingle bells on door knobs and take the bells with you when you visit someone else’s home, Tuckerman advises. Or you can install locks that use keys or codes to unlock them and place the locks very high on doors.
Reduce the risk elopement from school
Schools tend to have greater supervision than at home. However, in an educational setting, kids will bolt if the expectations overwhelm them, says Fogel. Experts recommend that parents advocate for their child to ensure the child has proper supervision at school written into the IEP. “If they’re prone to wandering, request a one-to-one aide for the child,” recommends McIlwain.
Tracking devices for children with autism who may wander
Most people in the autism community do not oppose tracking devices, says SpecialKids Mizell, because they can help locate a missing person and are not intended to track someone’s movements all the time. Some law-enforcement agencies distribute radio-frequency tracking devices to high-risk individuals through a program called Project Lifesaver. Contact your local police department to check availability of these devices in your area.
“Overall, radio frequencies are a safer bet,” says McIlwain, but each type of tracking device has pros and cons. “I highly recommend people do their homework,” says Tuckerman. GPS devices can be set to trigger warnings if a person leaves a certain area, but they don’t always work and need to be charged frequently. Cell phones offer another tracking option, but you can’t always depend on them, says Tuckerman, because kids may bolt without their phones.
The bottom line is not to let your guard down, even if you do have a tracking device, says Mizell.
Simon agrees. “I’m always ready to take off,” she says.
Suzanne Koup-Larsen is a contributing writer to MetroKids.