Recently, the ICD-9 committee began considering a code for wandering, which is a serious problem in not only the autism community but among Alzheimer's patients as well. But the issue of whether wandering should be considered a medical condition has emerged as a controversy.
The opposition to such an insurance code comes from adult autism advocates who say that the act of wandering has not been established as a medical issue, and that if it is designated as one, it could prevent caregivers from considering wandering as an act of communication -- one that is intended to reveal abuse or negative living conditions.
I disagree. And I've found it difficult to apply the objections in this controversy to the wanderers I know. Allow me introduce you to my own wanderer: my ten year old son. He is brimming with energy and he craves adventure. His appetite (or his need) for motion, stimulation, and activity is unending. We embrace these wonderful qualities because he spurs our family into trying more, going new places and undertaking activities that we never imagined trying.
But we get tired!
The last time my son managed to jimmy open a window and seek his own adventure, I was asleep on the couch after a day running after him on the beach. I thought all the exits were secure. But his hunger for more stimulation spurred him on. His brain and his body feel that being in motion is the way to feel "right." Being confined indoors, no matter how large the space or whether it contains swings, trampolines, and the like can feel confining in a way that he hates.
And so begins the story of the sickly-familiar but frantic neighborhood search, the eventual townsperson who calls the police, my shocked drive to pick up my son. I find him barefoot and a bit cross at being stopped in his tracks, but pleased nevertheless with the excitement in the air. He's at a stranger's house a mile from home. Several police cars are on the scene with their lights flashing. And what does my son say when he sees me? Forget "Hi Mom." He blurts, "No home!"
I understood. He didn't want to go home because he thinks it is too static there. He's used to that old place and it holds no thrills. But I must worry that the policemen will think my ten year old is communicating about abuse. And all of this excitement, attention, and adventure is big fun for him. He has been utterly (but unintentionally) rewarded in this impulsive and hazardous act. He isn't unhappy or unloved. He just needs excitement and lots of it.
We invest in door locks and we learn how to install them backwards (so that you need a key to get out of the house). We must install them ourselves because no locksmith will do it. (They are afraid of fire code violation.) We nail our windows shut with the knowledge that we must live with that danger to prevent another. We've gotten estimates for alarm systems that would do a much better job at protecting our perimeter than the Christmas bells I buy in quantity and dangle on every knob. Do I wish I had professional advice and financial help in this ever-escalating game of The Great Escape? You bet I do.
Today, wandering prevention is concocted behind closed (and tightly locked) doors. It would be far more sensible to bring this problem into the light so families can be assisted into smart, compassionate, and effective choices. We need to end the era of using hammer and nails on doors and windows out of fear and isolation.
The IAN (Interactive Autism Network) has started a survey to collect data about wandering (also called elopment). All parents of children with autism (whether they wander or not) can help by participating. Here's the link:
Susan Waltonis the author of Coloring Outside Autism's Lines, published by Sourcebooks. Coloring Outside Autism's Lines is a practical book about ways to have fun at home, with friends, in the community, during holidays and on vacation. It is also about embracing a way of life that highlights good times. Susan promises no cures, points to no culprits, and trumpets no inspirational miracles. She offers parents a path to making their family's life as happy and as filled with fun as possible. On sale now at Amazon and wherever books are sold.