Autism & Wandering

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. According to the National Autism Association, about half of children with autism are prone to wandering, so it’s important to take safeguards and to know what to do if your autistic child wanders away from safety.

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 potential danger involved with wandering arises because children with autism often have trouble with communication and safety awareness.

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 the National Autism Association.

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 soothing sensory experience for the children with autism who seek it out. “Knowing to search water first saves a lot of lives,” says McIlwain.

Tracking devices save lives

Parker Moore of Clifton, Va. was diagnosed with autism at the age of 2. “He could perceive when the household was busy,” remembers his mother, Nicole. “He was clever, fast and mischievous.” Because he was non-verbal, they enrolled Parker in the local Project Lifesaver program in Fairfax County at the age of 4.

Project Lifesaver is a non-for-profit program designed to help those with a tendency to wander away from safety, implemented by public safety agencies. The program gives tracking devices to high-risk individuals so they can be tracked using radio frequencies if they get lost, in hopes that they can be found before real danger occurs.

Those enrolled in Project Lifesaver are given tracking devices that look like a large step counter, and can be worn on the wrist or the ankle. Kids with sensory issues tend to have more success wearing the device on their ankles, says Lt. Stacie Talbot, of the Fairfax County Sheriff’s Department. “Kids usually forget about it there.” Acceptance in the program is free of charge, but there may be a waiting list.

Parker was located twice using a helicopter with a tracking device. On both occasions he was younger than 7 years old and had been missing for several hours. Thanks to Project Lifesaver, both times he was found safe.

The Project Lifesaver program trains searchers and first responders to respond appropriately to children with special needs. Participating officials in the program have gone through training to gain a better understanding of people with cognitive health issues. “We’ve gotten a lot better in the last 10 years,” says Lt. Talbot.

The Montgomery County police department in Maryland also uses Project Lifesaver. Officer Laurie Reyes, Autism Outreach Coordinator for the Montgomery County Police Department, advises caregivers to call for help as soon as possible if a child goes missing, because kids can travel as many as 10-12 miles on foot in just a few hours. “Call 911 and advocate for your child,” urges Reyes. She recommends preparing a script in advance so all of the important information can be conveyed to the operator and nothing forgotten in a time of stress.

To reduce the risk of elopement

Cell phones offer another tracking option, but you can’t always depend on them, says Sue Tuckerman of Philadelphia, mom of 19-year-old twin sons with autism, because kids may bolt without their phones. Surprisingly, GPS devices don’t work well because their batteries don’t last very long and they can be foiled by buildings or cloud cover.

“There is no substitute for supervision,” says Tuckerman. However, kids wander away from the best of caregivers. “More often than not, it’s not a neglectful parent,” says Reyes.

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. Jingle bells on door knobs are useful and portable when visiting someone else’s home, says Tuckerman. Another idea is to install locks that use keys or codes to unlock and place the locks very high on doors.

Parker Moore is now a 14-year-old high school student and has left the Project Lifesaver program in Fairfax County because he doesn’t need it anymore. “There are not enough positive things to say about the program,” says his mother, Nicole of Project Lifesaver. “The peace of mind was enormous.”