A nonverbal teen with Down syndrome named Matteo left his house in Monson on June 29 without an adult’s knowledge. He was found two days later about a mile from his home. While the incident ended safely, it brought the issue of wandering among children with developmental disabilities to the forefront. State Rep. Angelo Puppolo joined the Office of the Child Advocate and the Department of Developmental Services in efforts to raise awareness about wandering among children with autism spectrum disorder.
Wandering, or “eloping,” is a common behavior among autistic children. While all children tend to wander in their toddler years, those with autism may continue to do so later in their childhood and teen years.
The National Autism Association states that autistic children may elope to pursue an interest or avoid overstimulation from noise or fears. “These impulses and incidents can increase with added anxiety and stress, especially if the individual has challenges with coping, calming or regulating their emotions,” the association states on its website.
Elopement is especially dangerous because people with autism are more vulnerable to hazardous situations — accidental drowning is the number one cause of death among autistic children. According to the National Autism Association, other dangers include dehydration, heat stroke, hypothermia, falls and encounters with strangers. The risks also increase with the severity of autism.
“This is a deeply serious safety issue for families across Massachusetts. The recent incident involving Matteo from Monson is a reminder of how quickly a wandering situation can turn into a life-threatening emergency. Thanks again to all the first responders and volunteers who made sure Mateo returned safely. Our focus must remain on prevention, awareness, and ensuring families have access to the tools and supports they need,” Puppolo stated in a press release.
Dr. Bruce Waslick, Baystate Medical Center Chief of Child Psychiatry, cited a 2012 study in the journal “Pediatrics” that found 49% of autistic children over the age of 4 have eloped, and 26% of them were missing long enough to concern their caregivers. “Most of those kids are going to be fine,” Waslick said, but some may find themselves in “potentially life-threatening situations.”
Catherine “Cat” McEachern has a particular perspective on the issue of wandering among autistic children. In addition to being the Research and Professional Training Coordinator at Autism Connections of Western Massachusetts, a ServiceNet partner, McEachern is autistic and used to elope as a child.
Asked why autistic children elope later in life than their non-autistic peers, McEachern said, “There’s a lot of theories out there. For me, it was a sensory escape. I would run into the clothing aisles to have an enclosed environment within a big, scary store.”
McEachern said, “It’s the way autistic people explore the world… Special interests can draw us. It can be types of rocks, or trains — that’s very common. Nature’s a big attraction for a lot of autistic people,” she said, explaining that many autistic people cannot filter out background noise and find being in nature calming. Unfortunately, it can lead to dangerous situations.
“A lot of autistic people struggle with putting themselves in other people’s shoes,” McEachern said. If she were in a situation with someone with ill intent, she would not necessarily recognize the social cues that would warn a non-autistic person, because she cannot imagine having such ill intent toward another.
Waslick also said that many autistic children do not understand situational risks and dangers presented by their environment or by other people. “Kids don’t have a really good understanding of the social world. Kids with autism are unable to see the danger in following someone who could do them harm. Parents worry about kids wandering off, getting into pools or lakes. They can’t discern the dangers,” Waslick said.
When it comes to autistic children, Waslick said, “Parents instinctively provide a lot more supervision for a lot longer.” He said they also expect a similar level of supervision when children are at school and other structured activities.
However, Waslick said, “Realistically, you can’t watch kids 24 hours a day.” He said children may run off when a parent’s attention is on siblings or wake up in the middle of the night and climb out a window. “A lot of parents really worry about this,” Waslick said. “It’s a parent’s worst nightmare. It causes a lot of stress for families. You want to support the development of independence but also keep them out of dangerous situations,” he said.
The first line of defense is being aware of what triggers elopement for a child, whether due to sensory overstimulation or interest seeking. The Centers for Disease Control and Prevention recommends taking steps before a child elopes, including being alert about the child’s location, noticing the child’s behaviors, like making a specific sound or looking toward the door, having an emergency plan to respond and keeping up-to-date information about the child.
It is also important to speak to children about expectations. McEachern said her mother was injured when she was a child and because her mother could not chase her, she was very explicit about when and where McEachern could walk away or explore on her own. Autistic children need that, she said. “Having that conversation with children, even if the children are nonverbal, they understand.”
McEachern said children, even those who are nonverbal, can express their agency by giving them “break cards” — individual index cards with a photo of the places the child likes to go. They can bring the card to a caretaking adult to let them know they need a break and want to visit one of their favorite places.
Physical deterrents, such gated yards or childproof door and window locks can help keep children from eloping, but McEachern noted that many of the children she has worked with in the past can take windows apart. She suggested alarms to alert parents when an autistic child opens a window or exterior door.
It is also important to instill safety protocols in case a child successfully elopes. McEachern said medical alert bracelets are helpful, but even stickers with the parent’s name and phone number can be placed on the back of the child’s shirt. Electronic trackers, such as those made by Angel Sense, can be affixed to a child’s belt or something else they never leave without, giving the parent or first responders a method of finding their child.
“Swim classes are a big thing, not just for fun, but ‘What do you do if you fall into the water?’ That’s the kind of trainings that I work on,” McEachern said. She said YMCAs and similar organizations can reach out to her at 413-560-2600 to organize those trainings.
If a child elopes, the CDC recommends alerting first responders, informing their school and neighbors. Safety skills can be critical in such situations. These can include crossing the street, responding to commands like “stop,” and being able to give their name and phone number or show an identification card.
The entire system — alarms, locks, break cards, swim lessons, even Angel Sense — can keep autistic children safe,” McEachern said.
More information on the resources offered by Autism Connections of Western Massachusetts can be found at autismconnections.servicenet.org. The National Autism Association also offers a free Be REDy Booklet for family use and to provide to local first responders. It can be downloaded at nationalautismassociation.org.
