‘Constant fear all of the time’: Autism often brings risk of wandering children
By Cali Owings
Forum News Service
EAST GRAND FORKS — The 11-year-old here who drowned last week was known to wander away from home and hide, a boy drawn to water and interested in tents, basements, recreational vehicles and cave-like spaces.
The impulse to bolt off and the fatal consequences it can bring are tragically common. Anthony Kuznia is among at least 13 U.S. children with autism who have drowned following a wandering incident since April, according to the National Autism Association.
The frequency of autistic children straying and the dangers the urge poses can be an unrelenting concern for their families, leading some to devise elaborate systems to prevent their child from slipping out.
Anthony’s death rocked the autism community here, prompting a discussion among some on possibly coordinating with police on how to best search for children with autism. It’s also resonated nationwide, as many groups closely track missing person cases and deaths linked to a phenomenon also known as elopement.
"This is a constant fear all of the time. It touched very close to our hearts," said Kate Dahl, one of the managers of the FM Autism Support Group Facebook Page. "It could be any one of our children. When it affects one of our children, it affects us all deeply."
‘One step ahead’
Roughly half – 49 percent – of all children with autism over the age of 4 had attempted to wander or run away at least once, parents reported in a 2012 study. Parents also reported that wandering incidents often lead to "close calls" with traffic or drowning. A study by the National Autism Association found two out of three parents of children who wander said their child had a close call with a traffic injury.
But drowning is the leading cause of death for children with autism during wandering episodes, according to the NAA. Between 2009 and 2011, 91 percent of autistic children under age 14 who died subsequent to a wandering incident had drowned. Most often, they were found in a nearby pond, lake, creek or river.
Wandering can be goal-oriented — a child wants to go somewhere he likes like a park or neighbor’s swimming pool, but has no way to communicate that desire. It can also be aimless or a child can bolt from a safe environment because he finds it stressful.
Dahl said it can happen in an instant.
One afternoon, her daughter Emily, who has autism, was playing in their fenced-in yard. Dahl was sitting on the living room floor of her home near a window where she would periodically pop up to check on her. She started to play a game of Uno with her son.
"I shuffled twice, dealt once and she was gone," Dahl said.
Emily had maneuvered her way through a small hole in the fence and headed for the slide at the park across the street, narrowly missing two cars, Dahl said.
Her family has to continually evolve its locking mechanisms as Emily, now 7, grows and learns how to open them.
"You always have to be one step ahead," she said.
In 2010, several national autism groups launched an initiative for prevention and awareness of wandering — the Autism Wandering Awareness Alerts Response and Education Collaboration.
Her own daughter’s wandering behavior prompted Wendy Fournier, president of the National Autism Association, to help start up the initiative.
"You can’t ever have that sense of security," Fournier said. She has multiple locks on each door and dreads the day her daughter Aly, 13, learns to open them.
Many other parents and caregivers use keypad locks, alarm systems or tracking devices.
Some children also try to escape through windows or can be a danger to themselves while unsupervised in their rooms at night or in the early morning before parents wake up. Window alarms and bars can prevent an escape, and some parents use special safety beds designed for kids with autism that can cost thousands of dollars.
These devices promise peace of mind that a child is safe, but Fournier said that sort of calm is elusive.
"There’s no such thing when you have a child who wanders," Fournier said.
Still, AWAARE provides tips and resources for parents and caregivers to help keep their autistic children safe and also provides programming for first responders.
Many autistic children might not respond to traditional search and rescue methods like calling the missing child’s name. And more than one-third of eloping autistic children are never or rarely able to communicate their name, address or phone number.
Fournier said they encourage first responders to listen to parents because they have the best understanding of where a child is likely to go and how a child might respond.
Anthony’s death has prompted Dahl and other members of the FM Autism Support Group to consider how they can be prepared to prevent and respond to wandering incidents.
The group is considering collaborating with Fargo and Moorhead police to learn about their protocols for incidents with autistic children and to give law enforcement and other first responders resources to better handle these cases.
‘100 percent vigilant’
Monitoring her 11-year-old-son is a constant effort for Sandy Smith of West Fargo, N.D.
"I think people really underestimate what it’s like," she said. "Parents have to be 100 percent vigilant all of the time."
While a typical 11-year-old can be left in the yard to play alone, Smith said that isn’t the case for her son, Tyler.
Smith said Tyler started showing interest in trying to get outside when he was 4 or 5. He’s curious, and he doesn’t understand danger. But he’s never been able to wander far though because of his family’s constant vigilance.
"I was always afraid he was going to go outside, and I wouldn’t hear the door open," she said.
Her husband equipped all the doors in their home near the Sheyenne River with locks that prevent Tyler from getting outside.
Smith said she is constantly checking all the doors that lead outside — the front door, the side door leading to the garage, the basement door and the sliding glass door leading to the backyard pool and trampoline.
But those locks can’t guarantee that Tyler is safe all of the time.
"I can’t guarantee he can’t get away from us," she said.
Tips to keep autistic children from wandering
Here are some tips from the Autism Wandering Awareness Alerts Response and Education Collaboration:
— Secure your home using locks, alarm systems or other home security methods.
— Consider a tracking device that can help you locate a missing child.
— Consider an ID bracelet that lists contact information and other important information if a child goes missing.
— Teach your child to swim.
— Alert your neighbors that your child may wander and the risks involved.
— Provide first responders in your area with a sheet of information pertinent to your child before an incident occurs.
Caregivers can download a toolkit that includes a Family Wandering Emergency Plan here:
. org/docs/ BigRedSafetyToolkit.pdf