Autism Plus Wandering: A Dangerous Combination
A new medical code takes aim at a behavior that puts kids at risk, parents on high alert
Child Mind Institute
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, now 19 and 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 at best, tragic at worst. Spurred by the increasingly frequent stories of lost children being found dead, often drowned in ponds and creeks close to their homes, the autism community has made wandering an urgent priority.
But up until recently, there was only anecdotal evidence of the behavior. Now, preliminary results from the first major study on wandering, conducted online by the Interactive Autism Network (IAN), provide advocates the hard data they've needed to take action.
According to the responses from more than 800 parents, roughly 50 percent of children between the ages of 4 and 10 with an ASD wander at some point, four times more than their unaffected siblings. The behavior peaks 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 his name, address or phone number, either verbally or by writing or typing. (If you're interested in participating in the ongoing IAN study, click here.)
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. Consider the case of Nadia Bloom, an 11-year-old with Asperger's who disappeared in April while riding her bike, only to be found waist-deep in an alligator-infested Florida swampland. Incredibly, she suffered only from bug bites and dehydration. Jeff Bloom, Nadia's father, told reporters, "Our daughter is a nature lover. She went on a bike ride and stopped and went off to take some pictures."
It's no wonder that more than half of parents reported that wandering is the most (or among the most) stressful ASD behavior, ahead of self-injury, rigidity, aggression, and meltdowns. Meanwhile, 62 percent said fear of their child eloping stopped them from attending or enjoying activities outside the home, increasing their social isolation; not surprisingly, 40 percent of these already exhausted parents said they lost sleep while worrying about a potential "escape" during the night.
So why do ASD children wander? While researchers still aren't sure, parents ranked these as their child's top five possible motivations:
1. He/she simply enjoys running and exploring (54 percent)
2. He/she is heading to a favorite place he enjoys such as a park (36 percent)
3. He/she is trying to escape an anxious situation like demands at school (33 percent)
4. He/she is pursuing a special topic of interest, i.e. when a child fascinated by trains heads for the train tracks (31 percent)
5. He/she is 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 and a key player in the fight against wandering and elopement, 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 is playful or happy and focused while wandering; far fewer said their child is sad, anxious or "in a fog" when they take off.
Last week, autism advocates scored their first major victory in their campaign to better respond to wandering when the Centers for Disease Control's safety subcommittee overseeing autism announced a new medical diagnostic code for wandering. This sub-classification, which will go into effect October 1, will allow 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. Given that only 14 percent of study respondents said they got any guidance on the issue from their pediatrician or any other doctor, "the hope is the code will open the door for awareness, education, understanding, training and critical dialogue between doctors and caregivers." McIlwain says the American Academy of Pediatrics is preparing a fact sheet on wandering so that physicians have ample information about the code and resources to share with parents.
"The best overall strategy," McIlwain adds, "is a multi-tiered approach, which includes educating the child about safety and dangers using whatever means of communication works, including social stories, language and/or visual prompts. It's also important that caregivers—and schools—work to understand what is causing, or contributing to, the wandering or bolting behaviors so that any triggers may be addressed or eliminated."
Alison Singer, president of the Autism Science Foundation, one of the advocacy groups behind the IAN 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 such as tracking devices, locks, and door and window alarms are a medical necessity 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. This is what happened to 10-year-old Kristina Vlassenko, whose body was discovered in a water-filled hole at a construction site in Colorado. Her Care Trak tracking system, a watch-sized device, does not emit signals under water. By the time she was found, it was too late.
However, the code has not received universal support from the autism community. Adults with autism have voiced strong concerns that by categorizing wandering as a medical condition rather than a behavioral one, parents, schools and others will no longer ask why a person might be wandering, In his video "Autism and Wandering: An Important Message," Landon Bryce, who runs the site thAutcast, asks, "If you couldn't talk, and the only way you could communicate that something was bad was to move away from it, how would you feel about people making a law that that should be ignored?" He notes that a child might bolt because of sensory discomfort—perhaps a teacher's perfume is making him sick, so he flees the classroom—or, in the worst-case scenario, abuse in the home. In the first example, a child might be placed in a more restrictive school setting, thus impeding his educational opportunities; in the second, it could result in him being returned to an unsafe environment. After the code was approved, Bryce wondered how long it would take before other advocates start "calling for insurance companies to pay for parents to get their kids implanted with microchips, like pets?"
But McIlwain says the code is aimed at protecting, not harming, children with the highest risk of wandering-related injury or death.
Given the high number of wandering-related drownings, some in the community have come to speculate as to why those on the spectrum are drawn to water; one theory is that it has an alluring, calming effect due to the repetitive pattern of reflections, or the way it puts even pressure on the body, which sensory-seeking children may enjoy. However, Singer says there's no data from the wandering survey to support those theories: "We just don't know why."
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, now 11, 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. McIlwain feels the code will help keep the aide should her son continue to need one, so in October she'll have his pediatrician provide an updated letter noting the diagnosis for the school and his IEP.
While some adults with autism worry that a medical code could be used to justify the restraint or seclusion of a student, or place him 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 he or she needs, the child could enter a less, not more, restrictive setting.
Along with reducing wandering incidents and deaths, the code is aimed at relieving the incredible stress the behavior places on caregivers. Wandering children "are impulsive," McIlwain adds, so their parents are "constantly in prevention mode for fleeing, bolting, unpredictability, biting. We need support. Instead, we get constant scrutiny and judgment from other parents. But these are the same folks who would say 'Why weren't you more protective?' if something were to happen."
At a time when parents who "hover" are often chastised, "the pressure from other parents and family members who say we're too overprotective and overbearing may make parents think they're doing something wrong," she adds. "They may adjust their parenting to meet others' expectations. It's the wrong way to go. Parents need to stand their ground and focus on the child, not on how other people think they should be parenting."
"Other parents don't know our reality," she adds, "and they never will."
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.