Imagine waking up the last day of your perfect Walt Disney vacation to find that your 3-year-old autistic daughter is missing. You don’t know if she’s dead or drowned in the resort’s pool or kidnapped. You fear you’ll never see her again or know what happened. Sadly, this phenomenon is all too common today among children with autism. It’s called autism wandering and it’s terrifying. I should know because it happened to us.
Our Story of Autism Wandering
After 7 glorious park hopping days, my husband and I crawled into bed on Saturday night, exhausted. We were WIPED OUT, with nothing left to do but pack and fly home. We got out of bed and as I went to organize the kids for breakfast, I didn’t see Zoe. At the time, that wasn’t necessarily a problem. I figured she must be hiding in a closet or cabinet.
But after a few minutes of searching our two bedroom timeshare, we knew she was gone. Within minutes, we were on the phone to security, the resort leadership, and the police as we opened every door (kitchen cabinets included) and searched nearby grounds.
When it was apparent that Zoe was missing, my heart leapt into my throat. We were in a resort with three swimming pools and I got dizzy thinking about what could happen.
Fear & Despair for Your Missing Child
I lost the ability at this point to think properly. It felt like I was in a dream. My mind kept saying, “This isn’t happening, is it?” All I can think was that cut with images of walking towards a pool. Luckily, my brain the scene before I got there.
The worst part was that I just wanted to know.
Not knowing was the killer.
Soon, the police arrived. Timeshare security had already been there, speaking in Spanish too rapid for me, with my high school level skill in the language, to understand. I felt like they were talking forever. I kept interrupting and asking them why they weren’t out looking, why they weren’t checking pools, why they were just STANDING THERE??!!
Long story short, it seemed they had found my daughter hours before and, even when we called them, desperate and terrified, they did NOT tell us they had her. I won’t get into all the ugly, but it did get ugly, which increased our pain.
Seeing my daughter whole and absolutely fine, clueless of the storm around her, was the best moment in my whole life.
The Great Danger of Autism Wandering
Losing a child thank to autism wandering, however, is not uncommon. On March 21, 2017, WebMD posted an article, “Autism Greatly Boosts Risk of Drowning.” A new study revealed that kids on the spectrum are a whopping 160 TIMES MORE LIKELY to drown than the general pediatric public.
That’s frightening, but I can’t say I’m surprised. The problem is less that kids with autism are left unattended at pool parties, which is how many non-autistic children drown. It’s got more to do with an autistic’s child lack of awareness of danger and attraction to water. If they do not survive, most often it’s a water-related death like drowning.
In our own area, an autistic child went missing on New Year’s Eve, 2015, and was sadly found in the local creek the next. As in most of these cases, people question the parents. It was not, however, their fault.
Autism & Wandering
The problem can be described in one word:
What is elopement, also known as autism-related wandering?
It’s just that: when a child wanders away from their supervising caregiver. It happens fast and you may not be aware of it. It can happen when you are sleeping, in the shower or on the toilet. It can happen if you run in the basement to check out a leak or get deep into cleaning or are looking for something lost in your closet.
When it does, kids get lost and are exposed to dangers they don’t see or understand. And since many autistic people have no sense of danger, it can be fatal under the wrong circumstances.
The Stress on Autism Parents
It’s the most difficult and stressful thing about raising an autistic child. According to the AWAARE Collaboration, a division of the wonderful National Autism Association that helps prevent elopement, about half of all kids with autism engage in wandering.
Take a moment and really think about that:
HALF of the 1 in 45 (or 66) kids with autism in this country tend to wander.
Think about the stress of having to watch your child, who in many cases rarely sleeps, 24-hours a day, 7 days a week, with no breaks, no time off, no timeouts. The mental stress is unbelievable and I have been there!
I challenge you this summer to set your Google Alerts to “autism” and take note of how many stories of lost autistic children there are and how many are found in pools of water.
But It Gets Worse…
One of the big problems that compound this issue is that parents are blamed. For us, our lost child in Florida landed us a call from Child Protective Services in Pennsylvania. The case was closed as quickly as it was opened, but that doesn’t make it any less disheartening.
And for those of you who think I might be at fault, I want you to know that Zoe was asleep in a bed with her older sister, in a room with her grandmother, behind a locked front door whose bolts we thought she could not reach with heavy furniture blocking it off.
She was determined to leave. That family near us? They took heat because the child was lost from a New Year’s Eve party that they hosted. I’ve done that – host the party so you can be sure your child is around and won’t get lost in a stranger’s house. I’m 100% sure that’s how they thought it would go down because we’ve done that.
But even that can fail.
10 Ways To Protect Your Child From Wandering
So how do you help a child prone to autism wandering? You absolutely need to protect your child, if only just so you can go to the bathroom once in a blue moon. (Door open, of course!)
Here are 10 options available to you, many of which we have used – and still do!
1. Install a security system in your home.
Initially, got an estimate for a full security alarm system. But when the tech told us it could be programmed to alert you when a door or window is opened, we said, “We’ll take it!” Now if you open a door or a 1st-floor window, a robotic voice tells you exactly which one is opened, a la “living room window.” It’s extremely helpful in keeping track of open doors and windows.
2. Put up flip locks.
At one point, Zoe kept going in the basement, which for us is just where we keep the water heater, the wifi, and the Christmas tree. The BEST year was when she turned OFF the water heater. In the winter. On a frosty day. That we didn’t realize for hours. Flip locks are notoriously difficult EVEN for adults. Of course, they figure them out sooner or later but they work well for a long time.
3. Use a baby gate.
We put a baby gate on Zoe’s bedroom door for years. Our bedroom is nearby so we could always hear her call but it stopped her from getting up before us and eloping when she was little. We put toys in her room, so in the mornings, she’d play contentedly until we got up. Eventually, she outgrew it but it helped through the tough years.
4. Build a fence if you have a yard.
In 2007, we bought this house specifically because it had a big backyard. And then Zoe learned to walk and then got diagnosed with autism, and hence, we stopped using the yard, until we build a 6-foot high fence. It was costly (around $10,000) and required we put a double lock on the gate to prevent her exiting except through the house, but worth every penny. On nice days, I can let her out and not worry. We applied for an autism waiver that covered a fraction of the cost. Still, worth every penny.
5. Use a child harness.
I used umbrella strollers when we’d go to theme parks until Zoe was too big for them, but you can use a child harness if you feel ok about it. That said, I saw plenty of kids wearing them at Disney World, although getting your kids to wear one might be a problem.
6. Give your child swim lessons.
I wanted to give Zoe lessons like I did for Amelia, but that girl is determined! She taught herself, YEARS and years ago, at a Disney resort no less. She swims like a fish and is amazing at floating. Do yourself this favor for your child, you won’t regret it!
7. Get your child a service dog.
If you can find a nearby service dog provider, you may want to check this out. It’s involved and can be costly, but the law now says that: “service dogs used by the disabled are a deductible medical expense” according to NOLO.com. You may also be able to get an autism waiver for this.
The downside is that training a service dog is extremely costly, upwards of $20,000 or more. There are more affordable options if you want a dog that is trained more towards therapy rather than a true service dog, but you are still looking at few thousand dollars.
8. Block the doors when traveling with your child.
When we do travel, we block the doors with things like ironing boards and garbage pail in a hotel room, or big furniture in a condo rental. We learned that blocking the door with something that makes a LOT of noise is critical!
9. Have an emergency plan.
While you should have a standard emergency plan for your family, you should also have an emergency plan for if your child should go missing. AWAARE provides the Big Red Safety Box which includes things like 2 window alarms, a Family Wandering Emergency Plan, ID cards and more. Also, check out the free BE READY autism wandering prevention kit from NAA.
10. Use an autism safety product to prevent autism wandering.
If all of this sounds scary to you, you’re right. It is. And while all these ways are great, a tracking device can actually help locate your missing child if the worst happens.
Some kids wander more than others, some wander much less when they get older (like my daughter). You can either get a special device for them to wear to download an app to their phone. Some very good products include Jiobit or AngelSense.
Danielle K says
I’m so glad Zoe was found safe.
I understand how terrifying that can be. My god-son has Autism.
When he was 5, we took a cruise with his family. Just watching him for an hour so his parents could enjoy a kid free meal was exhausting. He totally will wander if you take your eyes off him for just a second!
Thank you! Oh that is tough. There is a program called Autism on the Seas that provides assistance for families who have autistic children, including a dinner time. Yes, you have to be so vigilant! At this age, we can trust Zoe on her own if we are not in the room and she wanders away much less then when she was in preschool, but I still don’t have confidence in her not walking away. I wish your god-son and his family the best! You have no idea how you helped them on that cruise, but I know it’s tough.