Saturday, September 1, 2012

92% of Autistic Children Wander.. Today My Son Did.

(Trey is 2 years and 11 months old)


1 out of 88 children has been diagnosed Autistic.

92% of Autistic children wander.

The number one cause of death among Autistic
 children is drowning.


My heart stopped.  I couldn't breath.  I was downstairs for maybe two minutes.. just long enough to throw the clothes from the washer into the dryer and bring up the dry clothes.  I have done this a million times while Trey played in the family room watching television. This time was different.

I walked into the family room and dropped the basket of clean clothes.  I remember screaming "TREY!!!!"... as I shockingly notice the front door wide open.  I ran outside.  No Trey.  I ran to the side of the house.. back to the front.. looked up and down the street.  No Trey.

I scream his name over and over even though I knew it wouldn't make much of a difference.  He rarely responds to his name.  I am now in a panic.. I need to call my husband.  I need to call 911!

Then I see him... wandering in the neighbors yard across the street and down a couple houses.  He is singing.. spelling random words to a tune.  He is in his own happy world.  I run as fast as I can to him, scoop him up, and bring him home.  Tears are falling.  I am so grateful and still so scared.

I close the front door behind Trey and start to cry.  The neighbors house he went to had a pool in the backyard.  All of the "what if" scenarios began running through my mind...a car, the pool.  I can't help but think of all the stories with unhappy endings and broken hearts of little Autistic children gone missing and drowning.  I never thought it could happen to my son.

Trey looks at the front door and points to the word on one of the note cards we have taped all over the house identifying objects.  He says "D..O..O..R.  Door!  Ma I go!"  
Words all around the house!

"Door!"











Yes, baby boy, you did go out the door... and if I can help it, you will never do that again alone!


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The AWAARE (The Autism Wandering Awareness Alerts Response and Education) organization reported that according to data released in April 2011 by the Interactive Autism Network (IAN) through the Kennedy Krieger Institute (KKI):
  • Roughly half, or 49%, of children with a autism attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings
  • More than one third of children with autism who wander/elope are never or rarely able to communicate their name, address, or phone number
  • Two in three parents of elopers reported their missing children had a “close call” with a traffic injury
  • 32% of parents reported a “close call” with a possible drowning
  • Children with ASD are eight times more likely to elope between the ages of 7 and 10 than their typically-developing siblings
  • Half of families with elopers report they had never received advice or guidance about elopement from a professional
In 2012, the National Autism Association found that from 2009 to 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with autism subsequent to wandering, and that 23% of total wandering-related deaths occurred while the child was in the care of someone other than a parent.  

I love and cherish moments when he will hold my hand...

The Mason Allen Medlam Foundation is working towards much needed help for these Autistic children who wander.  They are wanting to instill an alert system similar to the Amber Alert already in place.. but geared towards Autistic children and young adults.  
"We are working to get an alert in place which will be known as the "Mason Alert".  Unlike the Amber Alert, this alert would be geared toward autistic children and adults.  When a normal child disappears, most of the time the reasons are benign.  They went to one friends house instead of the one they were suppose to go to, they went to the park instead of going straight home, ect., ect.
When an autistic child wanders or disappears, the immediate response should be a heightened state of awareness, and an instant realization of the danger that child is most definitely in.  Due to their condition, all autistic children to one degree or another lack the ability to recognize danger signals.
They will walk into a busy intersection, despite traffic.  They will walk through an open front door, not knowing if a predator is on the other side.  They will hide in tight, enclosed spaces, not realizing the danger of suffocation or heat stroke. They will walk down a mile of railroad tracks, not realizing the train they love so much can kill them, and they will wade into the middle of a muddy pond, never thinking that they can't breath the muddy water.
We are hoping that the "Mason Alert" will help to educate authorities and also provide them with EVERYTHING they need to help us when one of our children escape.  Many people may say, "Escape?  How can that happen if the child is really being supervised?"   
Let me just say this.  Since my son died, I have been contacted by hundreds of parents of Autistic children, and not one of them have asked me that question.  Just because a child is autistic doesn't mean he or she isn't brilliant and creative in his or her own way, and the number one outlet seems to be figuring out every safety lock ever invented.  You put one type of lock on your door, and within a couple weeks you are out buying something else because your baby figured out that he can un-slide that lock with a broom, or if you push both sides together you can get the knob to turn.  A normal child learns limits as they grow.  They learn that leaving the house without mom and dad could mean they might get hurt.  Unfortunately, that is a very difficult lesson to teach an autistic child.
We want the Mason Alert to immediately provide authorities with the following:

  • A current picture of the child.
  • Child's address and Contact information.
  • Their fascinations: i.e. railroads, small spaces, water
  • Locations of all nearby hazards such as tracks, pools, ponds, abandoned houses, busy intersections.
  • Notify if the child is verbal or nonverbal.  This is very important, because when we search for someone, we tend to stand in one place and shout the person's name.  A nonverbal child won't respond to this AT ALL.  When I arrived home, the police were shouting Mason's name.  I could have been standing right beside him, shouting his name and not gotten a response.
  • How the child reacts under stress.  i.e. do they hide, do they run, do they fight, do they shut down and just stand still.
  • And finally, how to approach the child and who needs to approach the child.  In some instances, authorities will just have to immediately react if the child is in immediate danger, but in other instances, it might be better to wait for a parent or caregiver, and taking this step might help eliminate danger.
By signing and passing this around, you may just be saving someone's baby.  I wish that this had been in place for my son.  Instead of holding him in my arms each night and loving him, I kiss his picture and say a prayer and go to bed crying.  I don't want any other mother to endure that.  God bless you all. "
 Please CLICK HERE to read more about the Mason Alert and sign up!

Apply For Today @ National Autism Association's Website






3 comments:

  1. We experienced this on our last camping trip. 6 adults and somehow he wandered from our site and into the parking lot beside the lake. I was so terrified, though he was not that far away when found him playing between a couple of parked cars. There was a woman there who was trying to find out where he belonged, but couldn't get him to respond, which is pretty typical for him. Our kids don't have that sense of dangerous situations, and tragedies are so much more likely. My heart goes out to every ASD parent who has experienced this.

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    Replies
    1. My heart goes out to you and all who know this heart-stopping fear! I am thankful for a happy ending but know that is not always the case.. so sad :(

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  2. I am soooooo glad things turned out well for your family. James was a big time wanderer when he was little. I used to get phone calls from school like this, "Ah, Mrs. K? We are just checking... did you send James to school today?" He had a full time aide and he would still go missing! We used to put stop signs on all of the doors James wasn't allowed to go through without asking (his sisters bedroom, the front door etc...)it might work for Trey because he is an emergent reader.

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