A few days ago I was talking to the latest cutting-edge health professional trying to solve the mystery of my daughter’s autism and seizures when I thought to offer him some advice about entering the bio-med world of injured children and tired parents.
I mentioned the years of struggle many of us have endured, sleepless nights, empty wallets, lost friends, and medical professionals who look away from our children rather than trying to figure out what has gone wrong. We’re reluctant rebels, made this way only because we grasped that the medical community gave no hope, and even more damning, no explanation. Why was such a brilliant community suddenly so silent? If not vaccines, then what? Where are the demands for a Manhattan project to solve this mystery? At times I feel this newspaper and a few other voices are like John Connor in the latest “Terminator” movie who declares, “If you hear this message, you are the resistance.”
But resistance has its costs and its perils. Before my child had autism I was known as one of the most upbeat, optimistic people around. I’m still that way. However, in the past ten years I’ve lost my temper more times than I care to admit. The objects of my wrath haven’t always been the right people. They’ve been slow service people, others who just happen to cross my path at the wrong time, and even those closest to me.
I was trying to explain all of this to the health care professional when he nodded and said in his brief experience with autism parents he’d already come up with a word to describe the state of so many of us.
It was a good word and I immediately had an image of some tall-masted nineteenth century ship in the midst of a storm, its riggings and sails ripped, while the crew valiantly struggled to weather the tempest. Understanding the great danger to the ship you’d excuse the crew members if they used colorful language, or inadvertently hurt your feelings.
And I say these things because I hope that those who are considering joining us to figure out this mystery understand the brittle shape so many of us are in. It’s not personal. We’re just tattered. Keep working on an answer. We need your fresh and rested brains.
I’ve been both criticized and praised for writing about various health care professionals who claim to have new insights into autism. Some of these insights will turn out to be dead ends. Others will not. I believe it’s our duty and in our interest to create as welcoming an environment as possible for those who want to help.
The answer may come from some elite medical facility like Johns Hopkins, or Harvard, or MIT, but it might just as easily come from some self-taught researcher who stumbles upon the answer. In the eighteenth century lightning was one of the most destructive forces, damaging or destroying thousands of buildings a year in Europe and the United States. But it wasn’t the learned men of Europe who discovered the answer. It was self-taught Benjamin Franklin. We need as many people in this fight as possible.
I know that this tattered sailor will be appreciative of an answer, regardless of where it comes from.
Kent Heckenlively is Legal Editor of Age of Autism