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Jun 05 2014

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Autism, Wandering, and Death: Protecting those you love

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Wandering. Elopement. Fleeing. Bolting. Running off.

Whatever you call it, it can spell disaster for people with Autism Spectrum Disorder.


  Research shows that 49% of people with ASD will wander. Of those who perish as a result of their wandering, 90% will have drowned. For reasons not fully understood, people with ASD have a fascination with all things water. It’s like a magnet to their souls.

One of the most terrifying memories I have (and I wasn’t even home) is the time Jacob squeezed under a neighbor’s fence, stripped off his clothes and diaper, and toddled out onto their diving board. He could not swim. Luckily, his mother found him in time, and the opening we didn’t even realize was big enough to fit a kid was filled, but the thought of what COULD HAVE happened that day still makes me sick.

At the Autism Society of Maine’s annual Autism Information Specialist (AIS) banquet in Augusta, ME, the other night, we were honored with a presentation by Matt Brown (nbrown623@aol.com). Matt is a fellow AIS and has devoted his life to ASET, Autism Safety Education and Training (http://aset911.com/). A career law enforcer, Matt now travels the state teaching first responders, communities, and schools the skills they need to best handle crises involving people with ASD.

This is especially important in a state like Maine. Maine is packed with dense forests, thousands of square miles of wilderness, unorganized territory, and open water. Using http://aset911.com/ and http://awaare.org/index.htm (Autism Wandering Awareness Alerts Response Education) as my guides, I’d like to share some invaluable information that may save the life of your loved one this summer.

First and most important, is to develop a relationship with the emergency workers/first responders in your area. People with ASD often have sensory processing disorders, which make bright lights, smoke, sirens, shouting people, and even unfamiliar faces that much scarier. Autism is characterized as a receptive/expressive language disorder. If there is an emergency, your family member with ASD will likely shut down in the face of such chaos, and may be unable or unwilling to respond to his/her name if called. The more time someone with ASD can spend at the police or fire department to get to know those in uniform BEFORE crises happen, the better.

Second, know your surroundings, and know your loved one. Make a map of your area. Recognize the dangers. Is there a pool in the neighbor’s back yard? Is there a river or a pond nearby? Is there a set of railroad tracks that your son is currently obsessed with? Think about and document where your loved one likes to spend their time. Think about places they may wander if given the chance. Now that you have this, it’s time to link the two.

There are excellent forms and ways to register your loved one’s information with those in charge of first response on the websites I listed before.

From http://aset911.com/:

Autism/Developmental Disability Registration Form for First Responders

From www.awaare.org:

Autism Elopement Alert Form

Family Wandering Emergency Plan Template

What I like best about these forms and this line of thinking is that it’s proactive vs. reactive.

It gets this information into the system, so that should you have to make that panicked 911 call, the dispatcher will already have the information necessary to act quickly and possibly save your love one’s life.

It specifically lists who will be the information disseminator, who’s the basis of your die-hard search team, etc., etc.  Matt is doing his part on the other end to ensure that dispatchers and first responders ask the right questions. “Has your child wandered before? If so, where were they found?”

At our banquet, we got the opportunity to listen to an actual 911 recording where a woman was asked this question, came up with an answer, and they were able to find her child, right next to a pond. In her all-encompassing fear and worry, she hadn’t ever stopped to consider this. Panic and fear will cloud your thinking.

These sites don’t just skip past good parenting or pre-planning, either. There are a list of resources, especially on the www.awaare.org site that lends information regarding STOP signs for doorways, thoughts on door chimes or other wander-guards, service animals, or even electronic trackers.

As the weather starts to warm up, and we venture outside more and more, whether it be camping, fishing, kayaking, or just plain living near a water source, it’s super important to take all precautions necessary to safeguard the ones you love.

Remember: enjoy yourselves, but be safe out there.Whitehouse Sandy Stream Pond Baxter 1

About the author

BigCalfGuy

BigCalfGuy

I am a 39 year old, married, father of three amazing children; one of whom has autism. I fancy myself as more Atticus Finch than Holden Caulfield. Dynamite with a laser beam.

Permanent link to this article: http://www.bigcalfguy.com/autism-wandering-and-death-protecting-those-you-love/

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