Wandering is a Major Concern of Parents with Children with Autism

Lauren Nassef

Since 2011, 41 American Children with Autism have died after wandering, or bolting from caregivers. And there is still no sign of Avonte, and as everyday pass's I look more to my faith and try to block out the facts that hold little hope and pray this won't happen to another of our kids, although I know it will. Wake Up America! 

I think people need to know we live in fear, of what will happen, not if, but when our kids wander. Or how absolutely inadequate our tools and resources are to keep them safe, or how much this is not a function of good or bad parenting but rather a question of how long can we avoid the inevitable. Our kids wander and no one can watch someone every minute, no matter how good of a parent you are.

I consider myself a good parent, and I've been there. I will never forget the day my son went missing in a busy beach community. I went to return our rental bike, and he stood with a family member on the sidewalk of the main highway through town.  I returned the bike, headed back to where I left him and he wasn't there!. Seemed he said "he was going to see mom" and walked away. No one thought much of it, as I was only 20 or 30 feet away.  But, when I heard it, I knew it was not okay. Suddenly, I was running on all cylinders fueled by an adrenaline rush I will never forget. It was an out of body experience lead by pure instinct.  It was like a checklist, stop, look, listen and smell! 

My ears listened for anything that would give me a clue; a Nick noise, a siren, honking, tires screeching. There was nothing. 

My eyes scanned the area to see if any people were gathered looking at something, or if there was any unusual activity that would give me a clue and nothing. 

My legs took me to where I had been at the bike stand, no Nick. Then I headed right to the major intersection to see if he was trapped in people or a crosswalk....and no Nick.

With the obvious checked off, I paused to think. First, I had to stop the awful images that were flooding my brain; that someone had just walked off with him, or that any second I would hear the sound of screeching tires followed but a crash, or the vision of him walking into the ocean.  I focused and thought, what would I do if I were Nick? What's here of interest to me?  I did a quick scan of the area and two things hit me; two things I could smell, the ocean and pizza - two of his favorites.

I sent a family member to cross the boardwalk to check the beach...the water. I went in search of the restaurant responsible for the pizza smell. I spotted an Italian restaurant across the street which sent a serge of panic through me that started in my stomach. I got to the restaurant and began looking for a 8 year old eating pizza..nothing. Then my eye's went toward the kitchen and a family was staring at me. They had that look I've seen so many times - the "there's an unusual kid here, he's too close, he's behaving in ways we don't like and maybe he's yours" look - and it gave me hope I was in the right spot. I continued to look and listen, and before I saw him I heard him he made a Nick noise and then I found him. He was just wandering looking for pizza. I had never been so happy that he was a pizza fanatic in my life! People stared at both of us, no one understanding what they were seeing.  So there I was, no community to recognize him and nothing on him to connect him to me; that is the problem we have to solve.  

 Lori McIlwain is the executive director of the National Autism Association wrote a piece that appeared in the New York Times today...pretty dead on. A great read that puts the situation into perspective.   Thanks Lori for speaking for all of us! 

New York Times, Editorial 

Wandering is a Major Concern of Parents with Children with Autism

By LORI McILWAIN

Published: November 12, 2013  http://www.nytimes.com/2013/11/13/opinion/wandering-is-a-major-concern-for-parents-of-children-with-autism.html?ref=todayspaper

NOW in its sixth week, the search for Avonte Oquendo, a 14-year-old boy from Queens with autism, is shining a light on the issue of wandering among people with autism. On Oct. 4, Avonte managed to slip away after lunch from his school in Long Island City — even though he was known to wander during classroom transitions.

While most people associate wandering with elderly sufferers from Alzheimer’s or other types of dementia, a recent study published in the journal Pediatrics found that 49 percent of children with autism were prone to the behavior. Given the prevalence of autism — at one in 88 children, or one in 50 school-age children — it’s clear this is an everyday concern for many thousands of parents.

The day Avonte went missing, a Friday, a 12-year-old boy with autism was in a medically induced coma in Oakland, Calif. According to reports, he had wandered from his mother in a parking lot and entered eastbound traffic on I-580, where he was struck by at least one vehicle. By Sunday, another child with autism had gone missing: 5-year-old Devonte Dye wandered from his grandparents’ home in southeast Missouri. Tragically, he was found the next day, drowned, in a slough near the St. Francis River.

Since 2011, 41 American children with autism have died after wandering, or “bolting,” from caregivers. Water is often a fatal draw for these children. Since April of this year, 14 out of 16 deaths were from drowning