Autism and Wandering: Keep Our Kids Safe

by Jo on January 5, 2016


In 2004 our son Andrew was diagnosed with severe autism (by today’s DSM-5 diagnostic standards, a level 3 in severity). Since then, the amount of sleep we have lost worrying about our son’s safety cannot be quantified. There is no chart or graph or equation in existence that can statistically depict the fear we feel each day, the anxiety we live with, the constant reel of “what ifs” that consume our days and plague our nights.

Wandering is real.

The threat of death due to wandering is real.

For families like ours, it looms in the foreground, infiltrating every decision we make, every thought we have. Where we go, how we get there, and what security measures are in place once we arrive are questions that lead every single conversation we have. Even our home is not 100% foolproof. The minute we believe it is, we invite complacency to appear, and our son cannot afford for us to have a false sense of security. So we know that despite locks on every single door (including the five different kinds on our front entry) and door alarms, and what can only be referred to as extreme vigilance, we acknowledge there is a margin of error. And that scares the living crap out of us.

The lock our son cannot open today, may be the lock he masters tomorrow. His triumph would be our tragedy.

His inability to understand the guaranteed danger he would find himself in should he ever escape our watchful eyes and protective measures compounds an already difficult and desperate situation.

The last eleven years of parenting our amazing, loving, exceptional son has taught us many valuable and wonderful lessons about life and love and purpose. But there is a dark shadow that penetrates these lessons, and it comes from knowing that just around every corner lurks the possibility for loss and heartbreak.

The burden should not be on our children.

The burden cannot be on parents alone.

Moms and dads across the nation who are terrified of losing their child with autism to wandering need HELP. How many more sons and daughters have to die from wandering before we are heard? How many news stories will it take? How many graphs and charts and statistics do the experts need before they realize each number represents a human life lost?

I don’t urge action.

I DEMAND it.

Training for first responders, support systems such as GPS tracking for parents, prevention protocols in place in schools, educational programs and trainings for caregivers and respite providers, access to affordable swim lessons that accommodate various levels of ability (many of our children who wander are extremely drawn to water), and passing legislation designed to protect our loved ones. It’s a list of tangible ways to help that needs to continue to grow.

In the meantime, what are we doing?

What are we doing to protect one of our most vulnerable populations?

I’ll tell you what I’m doing.

I’m making sure the nearly dozen locks in and around my home are always engaged.

I’m making sure everyone that works with my son is aware of his propensity to wander.

I’m making sure I understand as many of the reasons my son wanders as possible so that I and those who are a part of his life can accommodate him as best as we can. Is his environment too loud? Is he feeling anxious? Is he escaping from something aversive? Is he looking for something in particular? What is he trying to communicate by attempting to wander? I may not be able to fully grasp his motivation to wander every single time he tries to take off, but being aware of potential triggers can and does help.

I’m ensuring that Andrew continues to learn about safety in the hopes that someday these abstract concepts will become familiar and will make sense. Presumption of competence means we will never give up on giving him the opportunity to learn and grow. Making sure his speech device is programmed with vital personal information and that he knows how to access it when prompted is also a big part of our ongoing commitment to keeping him safe.

I’m exercising discretion about where we take our son, what safety measures are in place, and how much influence we may have over the situation and the environment. This means as a family, we often have to say no, when what we really want to say is yes. And on the occasions we do say yes, we make peace with the fact that we will spend the majority of the time scanning for danger and will likely look like crazy, paranoid, overbearing parents; because if that’s the price of keeping our son safe and alive, we will gladly pay it, many times over.

Did I mention those locks? I’m checking them, again (and again). It’s the only time I’ve considered my OCD a blessing.

And of course, I’m lying in bed each night, wide awake, losing sleep while trying not to lose my mind.

I – along with thousands of parents and caregivers across the country – are doing all of these things every single day.

And still, it’s not enough. It will never be enough.

My son deserves to be safe, and to keep him safe, its going to take a village, filled with villagers who are dedicated to providing more than lip service about an issue that is literally killing our kids.

With the current trajectory regarding autism rates, it is only a matter of time before our school personnel, first responders, policymakers, and government officials know and care about someone diagnosed with ASD. And while not every individual diagnosed with this disorder wanders, many do, and their loved ones need to be heard.

And not just when they’re screaming their children’s names in desperation and anguish as they search and scour the earth while begging God for a miracle.

Because as we continue to see, over and over again, by then, it’s almost always too late.

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I have a little secret to share with you.
Come here.
A little closer.
Okay, you ready?

There are people with autism among you. In fact, you may be standing next to a person with autism RIGHT NOW.

I’ve included a visual aide to assist you in the identification of someone with autism. Pay close attention so you know what to look for:

First, notice the eyebrows. See how they’re made of hair? Yeah. That. Also, there seems to be two eyes and a nose. That’s a major characteristic of people with autism. Finally, people with autism may smile. Or wear a baseball hat. Sometimes, they may do both things at once; that’s usually a dead giveaway that you’re in the presence of someone with this disorder.


Shhhhhhhhhhhh! Stop looking around, you’re making it obvious. Look at me.

Now, whatever you do, don’t make a sound. Don’t move a muscle. You don’t want to let on that you suspect a thing because everyone knows that people with autism are……………. ALSO PEOPLE.

I know. Shocking, isn’t it?

What’s even more shocking is that they’re everywhere. They go to the same grocery stores you do. They frequent the same parks and beaches. They attend the same worship services (not that it counts, because Jesus is too busy blessing you and your perfect family to care about some shmuck with autism flapping in the back pew).

Get this: they’re even allowed to go to school with your kids (I know, right?!) Your child may have even played on the same school playground equipment as someone with autism. Probably not at the same time though, because that would be too inclusive, so your offspring should be safe. But just in case, you may want to panic and call your local school district and demand ”those people” be removed from the property immediately. Preferably with a police escort and an ambulance or two standing by.

I mean, United Airlines is doing it and it seems to be working, so why not give it a try? Seems that all you have to do to get rid of someone with autism, is just ask.

As you ponder excitedly who you’ll call first (Your pediatrician’s office? Maybe the local community swimming pool? Your daughter’s girl scout troop or the boy scouts? Oh God, what if someone in the troop is gay AND has autism? *Head explodes*) let me fill you in on something: Autism is not going away. It’s not a fad, it’s not bad parenting, and it’s not a life of glorious never-ending entitlements. It’s a neurological disorder you dummy, and it’s coming to a loved one near YOU. This is not a threat, nor is it a scare tactic. It’s just the truth. Autism is everywhere and as long as you’re everywhere too, you’re going to come across it, and, despite what you may think, probably live to tell about it.

Here’s the thing: autism families like mine, who have been elbow deep in discriminatory bullshit for the better part of the last decade, are pretty much over judgmental pricks like you. This is our society too; our community. These are our churches and synagogues. These are our hospitals and our stores. These are our schools and our parks. We belong here and we’re not going to let some ignorant a-holes tell us otherwise.

And here’s a thought: if we make you uncomfortable, maybe it’s your turn to feel unwelcome and discriminated against. Maybe it’s your turn to stay home, day after day, wondering how you’ll ever be able to take that family trip, or attend a loved ones celebration. Maybe it’s your turn to leave dinner half-way through because the stares from others are penetrating through your skull. Maybe it’s your turn to be denied the simple right to access society without being told you don’t belong. Yes. I think I like that idea. I say let’s run with it.

You know what the worst part of your ignorance and hatred is? Big jerks like you raising another generation of jerks, who will inherit the earth and look at my son with special needs as “less than.” I break out in hives every time I think about it. Perfectly wonderful children who would be better off being raised by a cardboard box are being poisoned by your ugly interpretation of the world. Where’s CPS when you need them? Oh, that’s right. They’re harassing your next door neighbors because their son has autism and you felt the need to report the family for what you deem to be terrible parenting.

I can’t fix you. It’s not that I’ve given up and that I won’t continue to try and minimize the assholery my son and others like him have to face on a daily basis. I will never stop advocating. But I can’t fix stupid, so instead of wasting my time on you, I’m just going to keep bringing my child with autism….everywhere. You know, exactly where he belongs. Those who are salvageable will get onboard and realize the universe is big enough for all us. I know it seems hard to believe, but so is our local Trader Joe’s.

So move over, or get out of the way.

Oh, and one more thing.

May you or someone you love never need a single accommodation or the compassionate understanding of a stranger.

Because there’s nothing worse than having to tell someone who’s already being crushed by the unforgiving weight of isolation and discrimination

“I told you so.”

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