Friday, July 10, 2009

Autism and Wandering: Our Kids Disappear

"Our kids disappear. It's as simple as that".

The above remark is from Susan J. Loring, Director, Autism Resource Center of Central Massachusetts quoted in Safe, not sorry Locators help find autistic children on the Worcester Telegram & Gazette page NEWS telegram.com. The article reports the happy outcome of a missing autistic child in Worcester found safe after wandering away and getting lost and provides and also reports generally on the tendency of autistic children to wander away:

"In addition to experiencing seizures, social behavior issues and learning disabilities, autistic children wander.

Ninety-two percent of children with autism are prone to wandering, according to the National Autism Association. According to a report by the Journal of Autism and Developmental Disorders, elevated death rates among those with autism were in large part attributed to drownings, after they had wandered away."

People who believe that autism is a joy, that autism deficits are simply the product of social intolerance, will not want to acknowledge the real life dangers posed by the real life deficits that often accompany autism disorders. It is hard to promote autism as a life style or superior way of thinking when autistic children routinely wander away, in some cases to great harm.

As the father of a boy with Autistic Disorder and profound developmental delays, (he is severely autistic), I have lived through the experience of having Conor wander away while I was preoccupied with a business phone call. Despite crossing a busy city street adjacent to our home at the time everything turned out OK, thanks in large part to a Good Samaritan who stopped his vehicle, took him to the convenience store on the other side of the street and remained at the store with him. After calling 911 I went to retrieve Conor. The Good Samaritan waited only until I arrived then immediately turned and left before I could thank him or find out who he was.

I usually repeat this story on this site each time I read of an autistic child wandering away. I am not a generally fearful person. I am a fairly big man who grew up on army bases where you learned to fend for yourself. As a lawyer I am used to speaking up and asserting myself. But the fear ... and the guilt ... that I felt while Conor was missing, and before I knew he was safe, were both extremely intense. After living through such an experience I have no time for the ideologies that deny the harsher realities of autism disorders.




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8 comments:

TannersDad said...

My story is I turned my back for a second and Tanner was on a UPS truck in Minneapolis. Thank God my wife was watching out the window or who knows where he would have ended up. Thanks for the post. Locks to keep one inside of bedrooms should be against the law... Parents who have to stay up all night to make sure the child does not wander should be as well. We need to do something now... http://tinyurl.com/m9r8ws

farmwifetwo said...

Been there, done that, a couple of summers ago, turned our backs for less than 2 seconds. 15 of the longest minutes of my life.

Thing is, he's not lost. He knows exactly where he is and where he's going and what he wants to see. And if I gave him long enough he'd probably wander home.... Or the neighbors would find him first and return him. No, I would never wait for him to show up, we'd go looking for him.

Luckily in 7.5yrs that's the only disappearance, but we've had plenty of bolting and chasing.

There's a reason they will never plant corn behind our house.... We'd never find him then.

My Dad offered to unsqueak my door hinges one summer and I asked him how was I suspose to here him wander out the door if I was busy somewhere else in the house... They still squeak, makes a good early warning system.

I hope neither of us has to live with that again.

S

Barry Hudson said...

My story is the day we went to a local community event (a rib fest). We were playing in the park and I was watching (our son wears a red hat and I keep my eye on this) but when he went up the slide (a little fort sort of thing) he was not visible (over the fort walls to the slide - a bit of a tunnel). After three seconds I looked in the tunnel and though he went in he was not there. We try not to hover to support learning independence but I honestly believe my heart stopped. What he had done was climb out a hole in the side and was gone. A friend was with me and he went to grab the nearest police officer and I started to search. I found him about two minutes later under another slide in the park but man o man let me tell you – this was the longest two minutes of my life. My son did not mean any misdeed and when I found him he was happily playing in the sand. I guarantee you this was the last time I ever let him leave my gaze and we now only go to parks where there is no obstructed views. Our son is well behaved so at home he has full freedom in the house and yard but I don’t see our fence coming down any time soon.

I do not know if your blog readers are aware but many police agencies (North America and abroad) support “locate” and/or registration for wandering high risk individuals (not just autism, they do this for seniors that suffer from alzheimer's since they are also prone to wandering). Locate is a GPS system that has the registered person wear a GPS wrist/ankle device (same size as a watch) for instant location ID if missing. Locate may be fewer and further between but registration is common and this can really help first responders by avoiding the whole Autism 101 course and giving the information they need so they can go to work without delay. A good information template to provide the police is available at: http://www.autismsafetyproject.org/site/c.kuIVKgMZIxF/b.5233659/k.95C7/Resource_Guide.htm

This safety issue alone defeats the ND argument that autism is a joyful variant of human reality. When my son went missing he was not being bad in any way (no forethought to “do” this intentionally) and it was entirely my fault he faced risk. My son simply did not understand the danger – this is a significant cognitive deficiency, not a different view of the world.

Suzanne said...

I used to have my oldest daughter on a wrist leash. She also used to run away from the house. Thank goodness I live in a townhouse complex with low traffic.

I'm so worried about my girls wandering now.

Roger Kulp said...

Actually,farmwifetwo,you are "lost"in a sense.I can't speak for anybody else,but in my case.there is a sort of transient dementia,that goes along with eloping or wandering.I think I was like three years old,when I first became aware of this.You really don't have any idea where you are,or what you are doing.It's very frightening,as a child,to come out of this state,hours later,having no idea where you are or how you got there.I have also done things that I wasn't aware of at the time,sort of like a sleepwalker,but you are awake at the time.So it's sort of a like a cross between dementia,and sleepwalking.

It's just as bad as an adult,if you are stopped by the police,and you are unable to communicate with them at the time.Because when this happens you really are nonverbal,even if you are otherwise "high functioning".

While it used to happen a LOT for me,the last really bad episode was about a year ago.I wasn't arrested at the time,but I had been a few times in the past.

The one time I brought this issue up over at left brain/right brain.Kevin and his pals came up with a bizarre explanation about escaping anxiety on a subconcious level.The sort of pseudofreudean garbage that only someone who hasn't lived with it could say.

In some cases,there really is something physiological going on in the brain,that triggers these episodes.Something that really needs to be investigated,but as far as I know hasn't been.

navywifeandmom said...

Here's my story:

When we were stationed in Hawaii, Natalie somehow slipped out the front door when I was taking the trash out one afternoon without me seeing her do it. I did not notice her missing until ten minutes later (I thought she was upstairs playing in one of the bedrooms with her siblings). We had a large ravine behind our house at the time. I was terrified. I called 911 also. While I was on the phone with them, a neighbor friend came and got me and she was up the street at a local park and had stripped all her clothes off (of course) and pooped everywhere.

We now have those locks high up on our doors that she cannot reach, but I dread the day when she figures out how to work those (and she will someday; she is smart).

Yep, this story is one of many reasons I have no patience for the "autism is a gift" crap that ND spews.

I have plenty of others that I can mention.

john said...

thanks for the post. My son loved to wander and it was so scary. First, we knew he had no idea where he was going and if stopped by anyone in a car and the person said "hop in, your dad wants you home" he would go in without even thinking twice.

David Rittenhouse said...

Hi everyone,
I'm Director of a program called Project Lifesaver/SafetyNet; a public safety program that uses electronic tracking equipment to locate kids with bolting behaviour.

There is a fantastic article that explains the challenges both families and law enforcement face regarding the issues related to children/teens with Autism, family wander prevention, and search and rescue when it occurs, and how Project Lifesaver assists with it (an in-depth and comprehensive article) : http://www.madison.com/tct/news/stories/296350

In the United States, there is precedent for support of the Project Lifesaver program by the U.S. Nat'l AutismAssociation. The AA provides funding to communities that want to start the program : http://www.nationalautismassociation.org/found.php

Please visit www.projectlifesaver.org to see if this program is in your community in the U.S. or Canada. I

Regards,
David Rittenhouse
Co-Director of SafetyNet/Project Lifesaver of Greater Victoria, British Columbia
250-893-9797