Half Of Children With Autism Wander, Study Says

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by Catherine Pearson

Lori McIlwan's son Connor was 7 years old when he walked away from Catherine Pearson playground of his public elementary school and started toward a busy, four-lane highway. It was not the first time Connor, who has autism, is non-verbal and fascinated with highway exit signs, had wandered off. But it was the most serious.

Eventually, a driver recognized that Connor was too young to be walking by himself and pulled over.

"He put my son in the car, because [Connor] was not answering any of his questions," McIlwan told The Huffington Post. "He began driving around with him, not knowing where he belonged." The man stopped by a local school to see if they could identify the boy, but it wasn't the right one. Eventually, the police were called. They thought Connor was being silent because he was defiant, not recognizing that he has autism.

"By the time I got to him, he was hysterical," McIlwan recalled.

Half of parents whose children have an autism spectrum disorder (ASD) say their kids have wandered off at least once. Of those, half have gone missing long enough to cause serious concern, according to the first major study to quantify autism-related wandering, or "elopement."

Of those who have gone missing, nearly 25 percent were in danger of drowning and 65 percent were in danger of a traffic-related injury, according to the findings published Monday in the journal Pediatrics.

"This is one of the most important issues with autism, and it has not been addressed much at all prior to this study," said Dr. Paul Law, author of the study and director of medical informatics at the Kennedy Krieger Institute.

"The bad news is, it is very common and probably the problem that puts children [with ASD] at greatest risk for an early death," he added.

Using an online questionnaire, Law and his colleagues collected information from the families of more than 1,200 parents of children with ASD -- and more than 1,000 siblings without -- about their children's tendency to wander away from safe spaces. The families were registered with the Interactive Autism Network, a large-scale effort to connect individuals affected by autism with researchers. Just under half of the children with ASD had autism, while 20 percent had an Asperger disorder and the remaining children had some other developmental disorder.

Children who wandered were most likely to run away from their own homes or someone else's, but they also left stores and classrooms or schools. Runaway attempts peaked at five-and-a-half years old.

When asked to describe the worst year they'd had in terms of wandering incidents, 30 percent of parents said their child had attempted to run away multiple times daily, while 35 percent said it happened at least once a week.

The researchers also found that children with more severe cases of autism were more likely to run away.

"What this study does is highlight an important topic. It doesn't go into depth about all of the reasons why it happens," said Dr. Roberto Tuchman, director of the autism and neurodevelopment program at Miami Children's Hospital's Dan Marino Center. "What it does say is that elopement is a very big and very serious issue."

The most common motivation for elopement, parents said, was that their child "simply enjoys running or exploring." Other explanations were that the child wanted to reach a place he or she enjoys, or was attempting to escape an anxious situation or uncomfortable sensory stimuli. Other children wanted to pursue his or her "special topic," parents reported.

"It's not just wandering," Law said. "There's bolting. There's seeking. There's running and fleeing."

But all of these behaviors, he stressed, are rooted in the core symptoms of ASD -- a group of developmental brain disorders characterized by difficulties in social interaction and communication, as well as repetitive behavior.

"The majority, if not all of the behaviors that occur with children with ASD have a basis in communication," Tuchman said. "Elopement is a breakdown in communication, as with many other behaviors associated with autism."

The new study also highlights how difficult wandering is for parents of children with ASD: More than half of respondents said it was one of the most stressful behaviors they had to cope with, and half indicated they'd received no guidance on how to prevent or cope with it.

"A lot of times the response is, 'This is happening because of bad parenting,'" said McIlwan, who is also executive director of the National Autism Association. "But it's happening in all settings, with all different types of supervision. I think this idea that it's a 'bad parenting' issue makes it difficult to get the support they need."

McIlwan said that Connor, her son, now wears a tracking device. She and her husband have also installed stop signs on the doors in their house and a high-pitched chime alerts them when any door is opened. McIlwan has also worked with her son's school to make sure he's supervised at all times, particularly when walking between classes or when on the playground.

With the Centers for Disease Control now estimating that 1 in 88 children in the U.S. has been diagnosed with ASD, experts say there is a pressing need for devising clear best practices for managing "elopement." Parents and health care providers must be aware of the potential risks, but so too must first responders and people in the community, Law said.

"On the broadest scale, it means we as a nation need to get a system organized so that when children do elope, and when parents call to report it, there's an immediate response," he said. "The likelihood of them having a very bad outcome is dramatically increased the longer it takes to recover a child in a safe place."


http://www.huffingtonpost.com/2012/10/0 ... 43657.html

I took my first jaunt at the age of 2 and a policeman found me. After that I was branded with an ID bracelet until I was 12

I took off a lot when I was little. I am not sure if that was due to autism or just me being a kid. I was put on a leash once and I didn't like it so my parents never put it on me again. They had to keep a close eye on me but I still managed to take off. Then mom found a leash that goes around the child's wrist and the parent's. That worked well until I figured out how to take it off. Then I had a ID bracelet on me for a while until I was nearly seven. I don't know why I took off. There were just places I wanted to go to and I took off for no reason and I don't know why.

I would run off when having a meltdown or just exploring. I live out in the country so I never got picked up by the police. my parents did discuss a tracking device more than once though

When I was a kid, I was afraid of leaving the yard without an adult present.

For good reason.

It wasn't unusual for the pigs to get out. One sow could easily have killed or seriously maimed a little kid before help could arrive.

Also the goats would get out. They might not eat you, but they could sure knock you over.

I did a lot of wandering off when I was little too, also had reigns. I guess I just wanted to explore.

I remember in Kindergarden, the 1st day once school was finished I took off when I was suppose to go to A+. Somebody musta caught me. Also when i started a new school during 4th grade, I was wandering around and didnt go to A+. Man I hated A+ those days.

I think the reason this is simply the kids don't get the message they are supposed to stay put. Also, maybe it IS bad parenting, but not in the way we think.

I wandered a lot as a kid. The most serious occasion was when I was about 6. There was a river in my birth town with a very strong current. It was winter and I went out on the ice. A man shouted at me to come away from the ice. Then he took me home to him, where he called my parents ( I told him my address or phone number, I don't remember which). If I had gone further on the ice, it would probably have cracked and I would have been sucked in the current and drowned.

I watched a young Mum in a supermarket yesterday. Her son, who was no more than 3yrs, was walking a few feet in front of her. As the distance between them widened, she said, 'You're getting too far away from me, don't go any further away than that'. The child asked why and the Mum explained why and that was fine with both of them.

What a contrast with my own experience. If I told my daughter that she needed to be closer to me, it went in one ear and out the other. She just did as she pleased. If I told her to stop, she just went faster. From the moment she could walk, until about a year ago, I spent the majority of my time and effort trying to ensure she didn't escape. My daughter is highly verbal, very high functioning and extremely intelligent, but there's no reasoning with her. It can be very frustrating. I've had other parents looking at me, as if I'm doing something wrong. I'm doing what they're doing (and some), but it has no effect. Thankfully, she's almost 7yrs now and she doesn't try to wander near as much as she did.

aha and how do "we" colectively think then?

but i agree it isnt as you thought, bad parenting.

i often ran away so i could visit my grand parents. the trip involved a 20 minute walk over adder infested sand dunes so my parents werent too thrilled with the idea.

during day time we were running unsupervised most of the time, small city and plenty of houses around means the chances of anything happening is near zero, i was bitten by an adder once , it was young and i had tried catching it.

I was a wanderer as a kid. My mother always had the chain on the door. Fortunately for her, I was lazy, too. I didn't feel like dragging a chair over to stand on to undo the chain. Every time we went to the grocery store or the laundromat, I'd get bored and drift away.

Once in a while I still feel the urge to just get up and go. Sometimes the only thing stopping me is my shoes. I wear heels at work since most of the time I'm sitting down.

Now my son is paying me back for all the hell I gave my mom. I can't take him shopping in any store that doesn't have carts. And he's getting too big to sit in them. I used to look sideways at people who kept their kids on leashes, but now I'm thinking about buying one for him.

When my daughter started to walk, she no longer wanted to sit in her pram (stroller). She wanted to walk (I mean run). But, I needed the pram for her naps. So there I'd be trying to grab hold of her, with one hand, pram in the other, as she struggled to get away. I bought reins and they worked, for a week. So I tried another set, with a little back packpack and they worked, for a day. Then I tried a wrist strap and it worked for less than a day. She would just lie on the ground or dig her heels in, when I tried any sort of restraint. In the end, I had to give up and just persevered with the grabbing, struggling and panicking, etc. She's now too big for the supermarket trolley, but occasionally she will sit in the part of the trolley where the food is supposed to go, at one end, with the food piled up at the other. It should get much easier, as time goes on. It has for us anyway.

I had one occasion when I was in Kindergarten where I didn't really wander off, but just stayed in place once the group I was with had moved on. I was absolutely fascinated by a mural of a pine tree. Thankfully, this was at my elementary school, so there was no real risk of me getting lost.

I wandered off a few times, but not often enough for my parents to really think that much of it. I was generally pretty obedient whenever they had anything to say. It was only ever to another aisle of clothes at a yardsale, or down the street to my grandmother's house, and this was when I was extremely young (probably 3 years old in both cases). Hard to say if it was associated with AS or not, particularly because I barely remember it, myself.

I was also a wanderer and remember it was out of mere curiosity and because i always loved solitary activities. From about age seven on i didn't wander but took long bike rides on my own and enjoyed the freedom to cruise around and visit remoter places. The feeling of independence was like a rush. Of course i got punished a lot, but i thought the fun of it was well worth the trouble.

For some bazaar reason I asked my mom to go outside and play when it was dark (backyard), only so that I can practise my Alcatraz skills of escaping from the backyard to the front. Walking 3 blocks to my grandparents and said I wanted to watch tv with them. (I wasn't allowed to watch tv at my parents house when I was 3 years old)

And exploring other people's backyards, I imagined I was some kind of super stealth ninja (I must have watched some weird show when I was little)

When my dad eventually found me at my grandparents I remember my parents fighting over me, my mother pulled on my arms while my dad pulled me on my legs. He wanted to beat the living ***** out of me