Friday, August 16, 2013

Autism and Wandering

In July 2009 (Ashton was 2 ½) we got Ashton’s official autism diagnosis from a highly knowledgeable well known specialist in the field of autism.  After asking us endless questions and handing Ashton a puzzle that he quickly completed.  It went a little something like this, “Your son has autism he falls in the middle of the “spectrum”, get him into a class for kids with autism.  Have a good day”.  You know how people say that parenthood doesn't come with a “how to” book.  Well apparently autism parenting doesn't either.  I had no clue what to do.  Jon was still in the denial stage of the diagnosis so I felt like I had no support.   
 I clearly remember a conversation I had with a friend of mine from high school shortly after that day.  I wanted to reach out to someone who knew what I was in for.  She told me a story about how her son (who also has autism) got out of the house while she was in the kitchen and he was in the living room.  She went through the terrifying story and I felt so horrible for her.  She warned me, be careful!  I had no clue that it was nearly as common as it is.  I thought this was a single incident.  I wish I would have paid more attention and took heed to the warning.  I thought: “Ashton would never do something like that, I am glad I don’t have to deal with that.”  Being that Ashton was only 2 ½, I didn't see a big difference between him and typical kids his age.  I always had his hand in public and at the house he wasn't quite tall enough to start messing with the doors or coordinated enough to make a quick escape.  If it was something I had to worry about you would think the pediatrician would have mentioned it, right?
About 6-8 months later, Ashton began school in the local school system.  I will never forget when I met my now best friend (another autism mom) and she asked me the following question “What do you do to keep Ashton safe?”  I don’t remember how I responded exactly but I went through what little we were doing as we really didn’t have any reason to think of doing more.  We “child proofed” our house wasn’t that enough?  She mentioned Project Lifesaver to me and how her son participated in the program.  She even gave me the contact information for the deputy to get Ashton enrolled.  I am very embarrassed to admit the following thought ever even crossed my mind: “Ashton already has enough going against him right now, that is the last thing we need….something on his wrist or ankle that further sets him apart from all the other kids”.  Can I please get a time machine just to punch myself in the face?  I still did not realize why it was so important or how prevalent elopement was in kids with autism or honestly what it was exactly.
Spring/Summer of 2011 we started having brief elopement incidents.  Ashton was 4 years old and his problem solving skills were evolving.  He learned how to operate the child safety locks on cabinets, how to take off the door knob covers, how to unlock the front door.  He hadn't quite mastered sneaking so he unlocked and opened the door right in front of Jon and I.  He bolted so quickly down the stairs, I was shocked.   Jon chased him down and caught up with Ashton half way down the street at which point Ashton was cracking up running down the middle of the road.  Not funny buddy, not funny at all.  “You have to stay with mommy and daddy” we said very firmly.  That was our first real scare.  We quickly got a door knob cover for the front door.  We had always thankfully been right there when he attempted to get away from us.  He would pull his hand out of our grasp and try to run or would take advantage of anytime the door was not locked (taking out the trash etc.)  When school started the 2011-2012 school year, I called an IEP meeting making sure that everyone was aware of the new side of Ashton.  Especially due to the fact he had a brand new teacher and new principal.  He already had a one to one aide written in his IEP, but he had grown so crafty.  I wanted to make sure everyone was on the same page and that a plan was in place due to his new found love of attempting to escape from safe environments.  At that point I started looking up more information on project lifesaver and got the contact information for our county again.  I still had not made the call. 
Not until September 28th, read about it here: What Is The Worst Phone Call You Have Received?.  Almost exactly one month later an event that rocked our community made me so thankful I decided to make that call - the story of Robert Wood Jr.   Robbie had gone to Ashton’s school.  His younger brother was in Ashton’s class.  I followed the story wondering how on earth I could live with myself if that was Ashton.  Project lifesaver participation jumped dramatically in our county the following days and weeks.  This story had a wonderfully miraculous ending however the majority of wandering incidents do not.  This year alone, at least 14 children with autism have perished after eloping from a care giver and in the past four years wandering lead to the death of at least 60 children. 
The relationship between autism and elopement was not, for the longest time, in the forefront of conversations about autism.  When something affects close to 50% (according to research published last year in the journal Pediatrics) of such a large group of people (according to a federal survey this year the prevalence rate of autism is up to one in every 50 school age children) you would think it would be highly publicized and known.  I was so glad to see the ABC News story this week, that covers the topic of autism and wandering.  Therapy and education are important for those on the spectrum but safety and safety education - awareness should be the #1 priority. 
The National Autism Association are doing a great job bringing this topic to light and providing a much needed resource for parents, caregivers and first responders.  Visit the site dedicated to autism safety at and their main site at

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