Autism and Wandering

When Liane Kupferberg Carter’s son Mickey began “escaping,” as she calls it, around age 2, “he was greased lightning,” she says. “I couldn’t take my eyes off him for an instant or he’d disappear — in malls, supermarkets, or in any public space.”

As her son got older, things weren’t any better at home. “He figured out how to unlock the front door and take off, so we had to install an extra deadbolt lock,” says Carter, a Westchester County-based journalist and advocate. “We put it out of reach—or what we thought was out of reach — all the way up at the top of the door. Then he figured out he could stand on a chair to reach the lock, so we also installed a loud chime to alert us any time the door opened.”

Back then, Carter had no idea that Mickey, diagnosed with an autism spectrum disorder (ASD), was demonstrating a behavior common among those on the spectrum, who have an impaired sense of danger. Called wandering or elopement — aka bolting — it is terrifying to parents and other caregivers. And it can be tragic, with lost children being found dead, drowned in ponds and creeks close to their homes.

In a 2011 study on wandering that elicited responses from more than 800 parents, roughly 50 percent of children between the ages of 4 and 10 with an ASD were said to have wandered at some point — four times more than their unaffected siblings. The behavior peaks in toddlers at 4, but almost 30 percent of kids with an ASD between the ages of 7 and 10 are still eloping, eight times more than their unaffected brothers and sisters.

Nearly half of the respondents said a child had been missing long enough to cause significant safety concerns, with 32 percent calling the police. Two out of three reported their wandering child had a “close call” with a traffic injury, while almost a third said their child had a “close call” with drowning. Another alarming statistic: 35 percent of families with wanderers reported their child is “never” or “rarely” able to communicate their name, address or phone number, either verbally or by writing or typing.

But extremely verbal “high functioning” children are a flight risk, too, because they may also have accompanying diagnoses such as language processing issues or anxiety, which can make it difficult for them to convey personal information in an understandable, appropriate way to first responders and others who might help them. Or they may just be so fixated on whatever’s interesting them, they don’t answer to their name.

While researchers still aren’t sure why kids on the spectrum wander, parents ranked these as their child’s top five possible motivations:

1. They simply enjoy running and exploring (54 percent)
2. They are heading to a favorite place they enjoy such as a park (36 percent)
3. They are trying to escape an anxious situation, such as demands at school (33 percent)
4. They are pursuing a special topic of interest, i.e. when a child fascinated by trains heads for the train tracks (31 percent)
5. They are trying to escape uncomfortable sensory stimuli such as loud noise (27 percent)

Experts divide wandering into goal- and non-goal types. While the desire to find an alluring pond is goal-directed, running to escape a stressor is non-goal-related. “Our fight-or-flight kids will bolt” when anxious, says Lori McIlwain, chairwoman of the National Autism Association, adding that these are the children who get struck by vehicles. “We might see a snake and run away. Our kids may see something we wouldn’t be afraid of. But they are and the adrenaline misfires.” Still, the majority of parents surveyed reported that their child was playful or happy and focused while wandering; far fewer said their child was sad, anxious or “in a fog” when they took off.

In 2011 autism advocates scored a major victory in their campaign to better respond to wandering when the Centers for Disease Control added a new medical diagnostic code for wandering. This sub-classification allows clinicians to add a wandering code to an ASD diagnosis, akin to a diagnosis of autism with epilepsy. The code is not exclusive to autism. It covers other conditions where the child or adult wanders, including a range of cognitive disabilities.

“We really went for a medical code so pediatricians would be a central source of information” for parents of wanderers, McIlwain says, while creating a better understanding of the behavior as a medical condition. “The hope is the code will open the door for awareness, education, understanding, training and critical dialogue between doctors and caregivers.”

Alison Singer, president of the Autism Science Foundation, one of the advocacy groups behind the survey, says advocates hope the code will also allow for more funding for research and proper training for police officers, firefighters and other first responders. These rescuers need to better understand those on the autism spectrum, including their behaviors. Otherwise, Singer says, they may not know how to locate a nonverbal or unresponsive wanderer. There’s also the danger that they might feel menaced if, for instance, an impulsive teen tries to reach for a shiny object like a badge or gun or a wanderer “invades their space,” as many on the spectrum often do; if that were to happen, the responder might mistakenly think the wanderer is high on drugs.

Advocates also hope the code can be used to establish that preventative measures — tracking devices, locks, and door and window alarms — are a medical necessity and should be covered by insurance. Wandering has already led some parents to fit their children with tracking devices, which are registered with local law enforcement officials. However, unless they’re waterproof, they often fail to save lives.

McIlwain says the wandering code could have helped in myriad ways had it been in effect when her son, Connor, had his most dangerous wandering incident. The boy began wandering at school when he was 3. But at 7, he was able to leave the playground of his suburban Raleigh, N.C., school, despite McIlwain’s notes alerting the staff to “not let him out of your sight.” Motivated by his fascination with exit signs, the boy, who has autism, took off through the woods and was headed for the highway when a Good Samaritan picked him up and started driving him around, hoping to find his school.

When staff at the first school the man stopped at didn’t recognize Connor, they called the police. The officers took over the search without knowing who the boy was. (While Connor is verbal, McIlwain explains, his language was much more limited at the time. He was unresponsive to his rescuer’s questions, though “he did convey to the police that he was going on an adventure to find his favorite exit sign.”)

Meanwhile, no one at Connor’s school had called his mother — or the police. “He could have been struck by a car, raped, abducted,” McIlwain says. When the police saw people at Connor’s school searching for him, they realized he belonged there. Only then did someone at the school notify her. The advocate notes that had the school had a proper emergency response plan — or if Connor had been wearing an ID — the situation could have been resolved quickly. Instead, “he was still in the cop car when they called me,” she says.

“I got him out of that school as fast as I could,” McIlwain says. She then enlisted a lawyer to help add a 1:1 aide to his Individualized Education Plan (IEP) to escort him during transitions, such as when he leaves the classroom to go to a therapy. With the added support, Connor is able to attend a school for typically developing children.

While some adults with autism worry that a medical code could be used to justify the restraint or seclusion of a student, or place them in a more restrictive school environment, McIlwain says her experience with Connor demonstrates how the exact opposite could result. If more parents can use the code to get their wandering child the supports they need, the child could enter a less, not more, restrictive setting.

For more information on waterproof tracking devices, ways to secure the home, and others measures to guard against wandering, see the Autism Wandering Awareness Alerts Response and Education (AWAARE) Collaboration site.