When my now 10-year-old daughter with autism was two years old, she escaped from our home and was missing for almost an hour. Needless to say, it was the longest hour of my life, and we were extremely blessed that she was found. I tell our story in the recent book by Team TMR Evolution of a Revolution: From Hope to Healing. (Shameless plug, I know, but all of the proceeds go to grants to fund other children with autism!)
My personal experience with elopement forever changed my view of what autism really meant to my daughter and our family. This wasn’t something to celebrate. In fact, it it woke me up to how devastating this condition could be. This has always been an issue I’ve followed closely in our community. And unfortunately, tragedy happens over and over.
Saturday, as I was lucky enough to be enjoying the day with my family and scrolling through my Facebook feed, I saw another story of an innocent child taken from us too soon: “Missing Autistic Girl’s Body Found in Pond.” It appears this beautiful 12-year-old girl with autism, who had no verbal communication, wandered away from her home. The details are vague as of right now, but it appears she headed toward a nearby pond and ended up drowning. As the story continues to evolve, I’m sure we’ll hear some of the “experts” tell us how this is a case of a neglectful parent or family and try to lay some of the blame on them. As if these parents don’t feel guilty enough, let’s attack them because they are the true problem here. (Insert eye roll.)
I’ve been monitoring different media outlets reporting on this story, and it occurred to me – and I’m sure many other parents of children with autism – that the media reports a missing child with autism as if it is to be expected, almost in the same way that they would report on an elderly person passing away. The broadcasters put on their best sad face, but give us the look that says there is nothing to be done. You know what I don’t see? Any sign of urgency or thought given to prevention and no questioning why so many children with autism wander other than they like the water. There is no curiosity as to what brings these children to a places with dangers that are far beyond their capacity to understand.
Here are just a few heartbreaking stories that have happened this year:
If a child goes missing, our society has come a long way past the picture on the milk carton in trying to make sure these children are found safe. They now issue Amber Alerts, and we receive notifications on electronic traffic signs, our phones and the GPS systems in our vehicles. These are great advancements that I’m sure have saved a number of lives. However, Amber Alerts don’t apply to children with autism who have eloped. They only apply to children who have been abducted. A similar alert system in place for children with autism would be very likely to save lives as well.
Despite the lack of urgency being displayed by our government and media, there are some organizations out there that are truly trying to help our kids. There are private companies working furiously to provide devices for children with autism and their families in order to track them and find them more easily if they go missing. The National Autism Association, a nonprofit agency, has developed an affordable toolkit for families to purchase to be prepared in case this tragedy ever happens to them, the Big Red Safety Box.
But what is the government doing about this ongoing epidemic of autism and elopement? As far as I can see, nothing at all.
[Editor’s Note: The Interagency Autism Coordinating Committee addressed this issue and has sent this letter on February 9, 2011 with recommendations to Health and Human Services Secretary Kathleen Sebelius. Despite the simplicity of the requests, to date the only one of the recommendations that has been put into action is number 2, the addition of a medical subclassification code for ASD-related wandering. Unfortunately, the Secretary is free to ignore the recommendations made by the IACC. Yet another indication of why the IACC cannot be an effective vehicle for change in the lives of people with autism. Please do what you can to help us enact change in federal autism policy by joining the Autism Policy Reform Coalition.]
Do you want to know my bottom line? The media and government treat my child and your child with autism as expendable. I know it is an extreme opinion, but I’m sticking to it until they prove to me otherwise. I was always taught that action speaks louder than words, and their lack of forward movement speaks for itself. Our children have been environmentally injured and, because of that, display difficult behavior, are sometimes non-verbal, and often have no sense of danger. And the message I’m receiving – loud and clear – from our government and media when our kids go missing is “What did you expect? Your child has autism.”
The entire scenario reminds me of a scene from the movie The Dark Knight. (My 12-year-old son will be so proud; I’m referencing one of his favorite movies.) In this scene, the Joker, played by the amazing Heath Ledger, talks about how when one person in power dies, the entire world mourns and the media eats it up like a gluten-free cupcake. But when a child or adult dies as a result of gang violence that same level of mourning doesn’t exist, because it was to be expected.
I just did what I do best. I took your little plan, and I turned it on itself. Look what I did to this city with a few drums of gas and a couple of bullets. Hmmm? You know . . . You know what I’ve noticed? Nobody panics when things go “according to plan.” Even if the plan is horrifying! If, tomorrow, I tell the press that, like, a gangbanger will get shot, or a truckload of soldiers will be blown up, nobody panics, because it’s all “part of the plan.” But when I say that one little old mayor will die, well then everyone loses their minds!” — The Joker
What will it take for them to wake up? When will it be acknowledged that our children are the canaries in the coal mine? What has happened, what is happening, to them to cause them to develop autism in the first place is an indication of a bigger problem here that affects EVERYONE. Our food, our environment, our medicine and our vaccines are contaminated. Until that is addressed by our government and our media, it will continue and more children will develop autism.
More children will elope. More children will be lost to their families forever.
As usual, it is up to us as the parents to do the work. We can’t wait for the government to take action any longer. We’ve put our trust in entities that have failed us too many times. This has to stop. We need to be the change. We are obligated to tell our stories and use our buying power, or what little we have after the autism. Our community has become divided but we have to put away our differences and let the powers that be know this:
Our kids matter. Our families matter. Our stories matter. The innocent children that have been lost to their families forever matter.
The time is now to let them know the minimization of what has happened to our children is unacceptable. The revolution is on. Bring it.
~ Queen B
*About the author – Queen B is an autism advocate, wife and mom striving for the best balance while raising 2 amazing boys and one beautiful 10 year old daughter with regressive autism. She will never give up in achieving better health and healing for her daughter. She is the co-author of Evolution Of A Revolution: From Hope To Healing and is a member of TEAM TMR, a not-for-profit organisation created by the founders of The Thinking Moms’ Revolution. For more by Queen B, CLICK HERE