The first time we understood that something was 'not right' with Scout's development, he was about 2 years old. He barely spoke at 2, an age when most kids are putting together multi-word phrases and sentences. Scout - who is now so amazingly verbal and has a vocabulary that stuns his teachers - had a vocabulary that was approximately six words.
And so it was that we began the first battery of tests for his speech therapy. During those tests, one of the observers noted that Scout, when overstimulated, would withdraw, lie on his stomach, and roll a car back and forth, watching the wheels go back and forth, back and forth.
"Have you ever had him tested for autism?"
No, I said. And look at him - he's not autistic! He's socially involved, he loves people and attention from people, he couldn't possibly be autistic. And of course, there were a few people of the cadre working with Scout at the time who agreed with me, so the whole matter was set to rest. I just couldn't believe that my son - my only child - was autistic. It just didn't make any sense.
Fast forward a few years to Kindergarten, and my son's teacher explaining to me that no, Scout isn't just a rambunctious little boy, he is different from the other children. He acts in an age-inappropriate way.
"Have you ever had him evaluated for autism? For ADHD?"
The ADHD diagnosis came first - and we decided not to medicate at that time. Mild but pervasive was the diagnosis from his family doc and the school's psychiatrist. Second opinions were gained, and we began working on coping strategies.
The Asperger's Syndrome diagnosis took two full years of tests and interviews and re-tests, during which we grew increasingly frustrated with our inability to communicate with or manage Scout the way we thought we should be able to do so. Finally, the diagnosis came in. Scout's stepdad and I sat down with our doctor and then we talked to a few folks who had a lot more understanding of Asperger's than we do. What we learned was a new language. We learned Scout-Speak. We learned to give times precisely and to speak without excessive metaphor.
And here's the thing: the longer I spend talking to people with Asperger's, reading about it, and so on, the more I find the idea of "curing" my son repulsive, as much as I would find the idea of "curing" left-handedness to be repulsive. I refer to Scout sometimes as "our Vulcan," and it's not far from the truth. His world is logical, clear-cut, with neat definitions for what is and isn't. His brain surely does function differently than mine does, but it's not - in his case - a thing that needs to be cured, and to assume that my child needs to be cured, and more, that my child's mental status ought to be a political bargaining chip is a repulsive, repugnant idea.
There's a saying among autistic folks/parents: if you've met one autistic child, you've met... one autistic child. ASD is exactly that: it is a spectrum of disorders linked together by a number of common symptoms, and it manifests differently in every autistic person.
John McCain would reduce that myriad spectrum of disorders and neurodifferences to a single curable item, and then dangle a cure in front of parents - many of whom have children far, far less functional and manageable on a daily basis than my son - as a political lure. Not only is that repulsive to those of us who feel that our children don't need a cure, it's also an impractical beacon of false hope.
If John McCain really wanted to reach out to families affected by autism in a meaningful way, he would have a solid, presentable plan to ensure that insurance companies would pay for therapies designed to assist autistic persons learn to function to the utmost of their capabilities. He would have a platform on this articulated beyond 'look, my running mate has a baby with an entirely different syndrome! She knows just what you go through!'
No, John. She doesn't know what we go through, and I don't know what folks who have a child further along the spectrum go through. What I do know is that your plan isn't a plan. It dangles a single miracle cure that doesn't exist - and cannot possibly exist for a set of disorders as varied as ASD - in front of parents who desperately want for their children to grow up to be the next Bram Cohen, or at least be able to to function in day to day life as adults, living full and productive lives. I have never before or since heard you articulate the idea that insurers should cover ASD therapies, or advocate the expanding of existing governmental programs in place to assist people like me and children like my son.
All I've heard is a vile and reprehensible attempt to use my love for my son as meaningless political bait.
Edited to replace an easily-misunderstood family nickname with something which requires a little less explanation.