It's Just Different! by Cynthia Griggs Niswonger
photo  by Jen Harlib Acosta
 
As May begins to shut its door I feel compelled to try my hand at hashing out my attempt to honor the lives of 6 Autistic children who eloped and drowned within a two week span of each other. My desire is to call some attention to the case of Autism and Eloping. In the press releases of the stories of these children it again came to the fore how misunderstood this subject is. Autism and Elopement, not the same as typically developing children, it’s just different. Trust me. I also raised a typically developed child through to adulthood. Their differences are like comparing Rembrandts to Picassos. Both, strikingly beautiful—both lovely to behold—it’s just different.
 
Mikaela Lynch, a nine year old Autistic child, went missing on Mother’s Day from their vacation home in California. Her body was found in a nearby creek three days later. Owen Black went missing on vacation in Florida and two days later his body was found washing up to the shore in the Gulf of Mexico. A 3 year old boy, Christopher Morrison, also drowned in a retention pond near his home in Virginia. There was two year old Drew Howell crept out of his family home and was very quickly recovered but already drowned in a creek less than 100 yards away from his home.  Three year old, Alyvia Navarro drowned in a pond in Massachusetts, and sadly as this article sat pending post I have had to make a return to my keyboard to add another name to the list. 14 year old Freddie Williams also drowned after eloping from his home in Missouri. More than a thousand people searched for Freddie but his body was recovered Thursday.
That’s 6 lives lost. All six, having flickered out– their full and complete potential as human beings lost to them, lost to us, –every hope, every dream— all of it, simply winking out one by one from this world, like lights gone dark upon the water.
The unspeakable tragedy of this has shaken me. These are some of my deepest fears, they haunt me. They are some of the most hideous of the fat plopping spiders that hide in the cobwebs of my soul. The totality of this responsibility to keep my child safe until he can navigate this world on his own chases me. The fear of dropping my guard and losing him, terrible. It haunts me deep in the dregs of feverishness of my sometimes zig zag wonky too big, much too small—never ever right–skewed up Alice in Wonderland dreams.
There has been no shock in my life quite like the five minutes that I spent searching frantically for my own son once on vacation when he wandered. He disappeared in the time it took for me to focus my camera onto my daughter and grab a quick picture. I looked up and he was gone. We were yards from the I5 freeway. Hazards were everywhere. I froze in that shock for a moment. When I could finally even begin to ask for help I opened my mouth and what came out was a thin high pitched plea for help. “Please, can somebody help me find Nicholas?” I said in a voice that was not even my own. When I said Autism, he won’t answer–he won’t– and we have to go look for him, people stared at me blankly.
I found him. I pushed people out of my way to move around them. And it was me who finally did. I had to move my body and rule out the freeway first. He was by a goat in a nearby pen close to the tourist rest stop attraction spot that we had stopped. He had so admired that goat; the seeds for disaster were sown right there. While hugging him tightly I remembered something that had recently happened.
This is the story of the other little boy, Mason Medlam, who had left his family home through a partially cracked open window and bolted from his home. This had occurred just the month before my stop at the I5 attraction. I remembered how, Sheila, his mother described everything. She told how she had called 911 within moments of being made aware of what had happened and she told how she’d run from her office at work to make her way home. She had cried desperately into the phone “Please! Go to the pond, my neighbor’s pond! Please go there first!” as she drove trying to reach her son. The searchers did what they had been trained to do in such cases. They began asking questions of the daughter who had been in charge and walking about the property, calling his name. They didn’t understand the urgency of Autistic eloping. The child was over 5. It wasn’t like a toddler had gone missing. His mother found him less than 17 minutes after he had gotten away. She found him and dragged him from her neighbor’s pond some 8 minutes after her first pleas to 911 to check there. The police were still doing grid searches and calling his name. She began CPR. Despite Sheila’s every effort, begging for appropriate help, and everything she did right, the little boy died a few days later.
Mason Medlam saved my son’s life. Because it was his story and his mother’s naked and raw willingness to use that tragedy and share it with the world, that came flooding back to me. I know it saved my child’s life because on two other occasions my son did bolt again. On one occurrence he came very close to serious harm. But, because of Mason’s life we had put protective measures in place.
Finding Nicholas unharmed but so near to the freeway had been a wakeup call. A serious one. One: Nicholas had eloped. On silent feet with determination, an idea had popped into his head and he was gone. Two: The public had been clueless as to how to help, even with me standing there telling them. Three: I had to come up with a better plan. My plan incorporated a GPS, a Medic Alert Bracelet, entry into the Project LifeSaver and the Take Me Home Databases—and I never ever gave myself permission to drop my guard ever again.
I only hope to shine a light on this issue. One that doesn’t focus on parental blame. One that so few people even bother to try to understand. I want to tell you some facts about Autism and Elopement and Death. Elopement is such an issue with Autistic individuals that in 2012 it was officially added to the DSM in the long list of diagnosing criteria.
 
The following are statistics relating to the issue of Autistic Elopement:
 
Overall Mortality
  • In 2008, Danish researchers found that the mortality risk among the autism population is twice as high as the general population
  • In 2001, a California research team found elevated deaths in autism and attributed it to several causes, including seizures and accidents such as suffocation and drowning
Wandering/Elopement
  • Roughly half, or 48%, of children with an ASD attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings.
  • In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement.
  • More than one third of ASD children who wander/elope are never or rarely able to communicate their name, address, or phone number,
  • Two in three parents of elopers reported their missing children had a “close call” with a traffic injury
  • 32% of parents reported a “close call” with a possible drowning
  • Wandering was ranked among the most stressful ASD behaviors by 58% of parents of elopers
  • 62% of families of children who elope were prevented from attending/enjoying activities outside the home due to fear of wandering
  • 40% of parents had suffered sleep disruption due to fear of elopement
  • Children with ASD are eight times more likely to elope between the ages of 7 and 10 than their typically-developing siblings
  • Half of families with elopers report they had never received advice or guidance about elopement from a professional
  • Only 19% had received such support from a psychologist or mental health professional
  • Only 14% had received guidance from their pediatrician or another physician
You can find a listing of Lethal Outcomes across our country dating back to 2009 at nationalautismassociation.org
Source: Interactive Autism Network Research Report: Elopement and Wandering (2011) Source: National Autism Association, Lethal Outcomes in ASD Wandering (2012)
In more direct terms what this means is that if we pull the parental blame game out of the mix we are looking at a symptom of a disorder. The same way high blood sugar is a symptom of Diabetes and seizures result as the visible sign and symptom of epilepsy. An Autistic child may not register pain or fear and certainly many struggle at recognizing danger at all. When they beeline for the train tracks or the water, often heading for places they have enjoyed and want to return to they may have only the singular focus to get there. Regardless of ability to swim or recognize and avoid danger.
Elopement and bolting can also be triggered by a sensory overload or a need for a child to escape stress. If that happens a child with Autism who has bolted may actively seek to avoid being found and instead of turning to the sound of their name will instead run away. Many children with Autism will not reliably respond to their name. A bolting overwhelmed child with the need to escape all external sources of sensory input is at grave risk. The risk of elopement and improper hazard recognition and sensory avoidance and bolting can go on, well into a child’s life. Most Autistic wandering deaths actually happen to children between 7-10 years of age. But, it can go on much longer; it can in fact go on indefinitely.
The best I can explain it from my own experience is that for a child like mine we are talking of a level of supervision required on par with a child who has just begun to walk. Remember how closely you had to watch your child then? Well, it’s a lot like that except he is stronger, faster, more dexterous, more determined, and more capable of navigating an escape than a one and a half year old. He is of course older than that now. But, his ability to spot danger may be just as unformed as that toddling child.
I am saying to look only at parental responsibility and not the disorder is a serious mistake. I am also saying that to judge these parents on a snap, to suggest that this could never happen to you, is erroneous at best, and cruelly cold at its very heart.
If you don’t believe me try this; for one day take note of how many times you exit the room and use the restroom, pick up a phone call, take groceries from the car, wash a dish, change from pajamas to clothes, cook a meal, or spend time with another child or your spouse? Did you shower today? Did you sleep 8 hours last night? If you did any of these things, and your child wasn’t in your direct line of sight every one of those moments, then you must ask yourself like parents of Autistic children must do 9,000 times a day: Are you absolutely certain that somebody remembered to bolt the door? Is every window shut tight, are you sure it wasn’t opened even a crack? Did everybody else remember to do those things too? If you do not have a “tag” system like many families with Autistic children do, where one adult always has eyes on the child unless at all moments of the child’s waking day, or, he or she must “tag” out to another repsonsible party, then the totality of being sure– is on you. Are you ABSOLUTELY CERTAIN at EVERY single moment of every day?
There. Those are the moments that it can happen. Are any of the activities I just mentioned by their nature negligent? If you did them and your child wasn’t right there in your sight then, just like that, you put an Autistic child at risk.
Parental blame assignments are not helpful. It will not solve the problem. Your assessment or judgment of fault after the fact will not change the future for anybody, but your awareness, your choice to be a champion to solution and prevention, and the sharing of what you know, quite possibly might. Resist, idle blame talk. In my experience it is rarely accurate, anyway. All I can say is that every other Autism parent I have ever met have actually shown themselves to be far from neglectful and have been some of the most amazing, resilient, and dedicated people I have ever had the honor of knowing. I know there have to be ones who are not, but I personally, have never met one.
Please instead of simply watching the stories unfold teach yourself about this disorder. Google Autism and Elopement. Learn about programs like: Take Me Home Database, Project Lifesavers, Medic Alert and the National Autism Society of America’s Big Red Safety Box. Help make more of the public aware of the implications for Autism Elopement/Bolting/Wandering and death. Support initiatives like Mason Alerts—an idea that is like an Amber Alert but is tailored to specifics of Autistic Elopement and that child’s area and hazards. Please then teach others what you learned.
If an Autistic child in your area wanders take what you’ve learned and help the search. Remind neighbors and first responders to rule out dangers first. Go to water sources, traffic, train tracks, check in hot closed family cars in summer months, rule out the dangers first. Check your own property, cars, and water hazards too. Many wanderers are actually killed in neighboring swimming pools, decorative ponds, or hot cars and not on their own family property. Stop young children if you see them out by themselves, that’s right, I said—interfere. If you see a child alone, and you wonder for even one second if everything is alright—heed that inner voice. Ask after her, use a quick conversation to assess for the signs that this might be a child who is headed toward danger. Children with Autism who are at the gravest risk often will not be able to answer basic things about self, and environment, or yes and no questions appropriately. Take a moment and engage them. It can save a life, and you never need stand in the wake of a tragedy wishing—wishing, that you had honored your instinct to check in.
Resolve today to learn what you can, to teach it to another, to be an active part of the solution and prevention. Resolve to stand as a guard with us, not a judge against us. Remember Mason, Mikaela, Kenny, Freddie, Drew, and Owen. Help to prevent one more precious light from winking out.
People say Autism cannot kill, you are blessed they say, at least he is healthy. And, I am blessed! Nobody knows that better than me. He beats as my very heart. His beautiful soul is soft and gentle and perfect. If he never said another word to me, and I just got to be near him–it would be an honor and a privilege to simply be a part of him. Change his Autism, no, not anymore. Fight for his rights to live his life as completely and uniquely individually as he can with Autism, absolutely, yes. But, I also will not apologize for my next statement. Autism can in fact kill.
I submit to you that in calm still waters of a child’s determined fascination and one moment of opportunity–SNAP—tragedy suddenly rears from behind the mask of the ordinary day. When opportunity meets up with this part of the disorder, Autism can kill.
Elopement/Wandering/Bolting has killed 6 children in this country in this past month alone. That is far too many and yet there are sure to be more. Because elopement and “wandering off” for these children and some deeply impacted adults is different.
It’s just different.

Remember these names and these faces… We don’t want to every have to share your child’s name and face in a post like this.  Reach out and get help.  Wandering IS a symptom of autism.  It will happen at some point in your child’s life.  Be prepared.

Drew Howell – two years old
Owen Black – eight years old
Alyvia Navarro – three years old
Freddie Williams – fourteen years old
Mikaela Renee Lynch – nine years old
Christopher Morrison, JR – three years old

mikaela-renee-lynchMikaela Renee Lynch age ninedrewDrew Howell age twobilde1Owen Black age eight

Alyvia-M.-Navarro-GodboutAlyvia Navarro age three

22452979_bg41Freddie Williams age fourteen

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