A study published today in the journal Pediatrics says that about half of kids with autism have eloped–wandered away from a safe place–at least once after the age of four.
“I knew this was a problem, but I didn’t know just how significant a problem it was until I really began to look into it,” Dr. Paul A. Law said to the New York Times. Dr. Law is the senior author of the study and director of the Interactive Autism Network, part of the Kennedy Krieger Institute. “This is probably one of the leading causes of death and morbidity for kids with autism,” he said.
The study sample included 1,218 children with Autism Spectrum Disorders (ASD) and 1,076 of their siblings without ASD.
“They needed a study for that? Just ask almost any parent of a child with autism,” responded a mom on my Facebook page (many of my readers have kids on the spectrum).
Landon Bryce, a writer and editor who has Asperger Syndrome, told me that he did wander a few times as a kid. In one instance, he left school because he was being teased. He expressed serious concerns about the way the data was gathered in this study.
“This is a big problem, but this is terrible data,” said Mr. Bryce, who is the founder of the website thAutcast. “And the rights of autistic people have already been abridged based on even worse data.”
Mr. Bryce noted that “even the author of this new study says that it likely exaggerates the problem because it is based on a parent survey of a very ‘Autism Aware’ community. The bullying study done through the same site over-reported bullying of autistic kids and under-reported bullying of non-autistic kids.”
Two of my own four kids are on the spectrum, and after spending the last two years writing about autism issues, my overwhelming response to this study is pretty much, “no shit,” but I’m still really happy to see a very serious issue being quantified and discussed.
My son generally does not wander, but we did have one incident where he attempted to escape from preschool because he was so freaked out by the expectation of holding hands with his classmates, walking in a circle, and singing. Finding the doors all locked, he crawled under a table in the farthest corner, and curled into the fetal position. Attempting to escape was his way of communicating how overwhelmed he was.
One issue that was brought up in response to this study is that “wandering” doesn’t adequately describe what’s going on with many of these kids. (The correct term is elopement.) “To me, [wandering] sounds like lack of attention or intention,” wrote one mom. “With my son, it was very intentional.” After escaping from his classroom twice, her son now has an aide keeping a close eye on him.
Another mom (who also has a child on the spectrum) wondered whether “wandering” isn’t more common than realized in neurotypical kids, and just not studied. “When neurotypical kids wander, it’s not newsworthy,” she pointed out. She also emphasized that the study highlights the need for schools to teach kids communication skills, and not to underestimate what all kids are able to learn.
She brought up several good points. I think it’s also difficult to pinpoint how much of the escapist behavior is specifically autism-related, and how much ties into other disorders that tend to go hand-in-hand with autism such as Obsessive-Compulsive Disorder (OCD) and Attention Deficit-Hyperactivity Disorder (ADHD).
My daughter has wandered off several times. Before her diagnosis of Asperger Syndrome, we thought it was simply a symptom of her “primarily inattentive type” ADHD. Honestly, I no longer try to figure out what’s ADHD with her, and what’s Asperger, and what’s OCD. It kind of doesn’t matter. What does matter is helping her to be independent, and to find the world less stressful, so that she’ll have less desire to walk away.
For parents of kids on the spectrum who elope, there’s a very real concern about whether the child has the capacity to find her way home, and how aware she is of the dangers around her. Also, for some children with autism, elopement takes on a decidedly OCD element: there is a nearly unstoppable compulsion to escape. “We experienced this all too frequently with our daughter when she was younger,” mom Deborah Prater told me. “She wandered away from school, from home, while we were on vacation…give her a second and she’d be out of your sight and eloping. She absolutely required 24/7 monitoring without distraction. We had alarms installed on our doors. She’s older now and hasn’t attempted to wander or elope for some time. This is a very real and frightening situation.”
Even with school staff aware of her daughter’s elopement issues, incidents would happen. “She actually made it to a neighboring home one day and was playing with some buckets on their porch when school officials finally located her,” Ms. Prater said. “They notified me after the fact.”
Many parents were pleased to see the study quantifying a known problem, and hoped that it would raise awareness about a serious issue.
“We could really use some public awareness,” wrote one mom, whose son recently slipped out of a closed waiting room because another mother, “instead of stopping him as he tries to slip by, she holds the effin’ door open for him and lets him out into traffic. So yeah, a little public awareness would be nice. Or a basic understanding that gates and doors are usually closed for a reason.”
The fear that their child will escape can become all-consuming for parents of kids who elope frequently. “We live in Ft. Knox because of this,” mom Jen Urberg told me this morning. “I’ll never forget seeing my two autistic boys walking hand in hand down to the street. I can say I’ll never make that mistake again, but to be honest, I fear the day that life gets too comfortable again and this happens. They say we parents have PTSD symptoms just like combat soldiers. The wandering is like walking through a mine field. We never know what will happen next!”
“My son was an escape artist,” wrote another mom. “Our windows were caulked shut, dead bolts on all the doors, you name it. He always found a way out. We referred to him as a ‘runner.’ It’s not the wondering off that worries most. It’s the fact that mine didn’t understand the danger of running into a busy street or walking into a stranger’s home.”
It’s important to understand that individuals with autism who elope aren’t doing it for attention, or because they’re misbehaving in any way. And the good news is that that many kids “outgrow” this behavior — because they gained communication skills to express feelings of being overwhelmed, and coping skills to deal with things like massive sensory overload. In my son’s case, his attempt to escape preschool was his way of communicating a desperate need to get away from the group singing activity.
As he’s gotten older, not only has he built up more of a tolerance to sensory input, but we as the adults in his life are better at helping him cope. For example, he now has noise-cancelling headphones to wear at home and at school when sounds are overwhelming. We’ve also helped him by giving him specific language to use when he’s stressed. In our daughter’s case, as she’s gotten older, she’s gotten better at (literally) navigating her way through the world.
Now that science has attempted to quantify elopement, here’s hoping the next study focuses on best-practice methods to teach both communication and coping skills to kids who elope.
(Photo Credit: iStockphoto)
(via: New York Times)
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