Every day for the past nearly seventeen years (ok…sixteen years and 51 weeks as of today,) I have been in constant contact with J. I breastfed him from birth to the age of four (exactly until twelve years and 51 weeks ago.)
I will now give you a moment to let that fact sink in…
In a nutshell, not only have I been dedicated full-time to caring for J, attending to his needs, his development, his education, his acquisition of skills, etc., etc., etc., but I have also taken the time to do sufficient research to properly fuel more than one doctoral thesis on the subject of Autism. (No, I won’t be going back to school…the prospect is tempting, but I no longer have the energy or the functional brain cells to spare.)
If the word Autism is mentioned on the news, my ears prick up like a horse sensing the approach of something unusual. If the word Autism figures in a headline, magazine cover, essay I will latch on to it and read the text through. Yes, I follow the subject with as much avid interest as others follow football or baseball. I try to separate the wheat from the chaff, but I do read the majority of what touches on this particular issue.
My eighty-something year old dad has turned Autism into his hobby. Correction: proving that J has been misdiagnosed and coddled into being autistic is his hobby. “I was a quiet child with great affinity towards music, but I am not autistic!” “I didn’t really speak until I was five, and I’m not autistic!” “When I was very young…” That the majority of these conversations take place over the phone, long-distance, is a blessing in disguise: I can emote and bounce around the room in desperation while maintaining an evenly-keeled tone of voice. Usually, after hanging up, I lay on the carpeting staring at the ceiling for a few minutes…
My dad has never been wrong. The older he gets, the more reference books he keeps next to the phone so he can correct your usage of a word or indicate if you are correct in telling him it comes from Ancient Greek, Middle English or a cockatoo’s wing-flapping dance on a stick. If he cannot prove he is right, he will say he has to go…and he hangs up without further ado. My dad is the only person who doesn’t drill a hole in the wall: he furrows an orifice from the surface and into the… You get my meaning. It’s never as simple as it can be with him.
So, for the past thirteen years he has been trying to prove that J has been misdiagnosed and I’ve been going about this all wrong. He loves his grandkids; he cares about his grandkids; he hasn’t spent anywhere near enough time with his grandkids to know this is not all a figment of my imagination (or of our collective imagination as a family.)
We have run the gamut of “if I wire an apparatus with the proper connections to generate a sound that indicates yes and another to…” Dad, it’s better if he learns to say YES or NO. “Well, but if he can’t…” If I had followed my father’s entreaties J would be well versed in semaphore by now.
My mother has a M.A. in Education. That hasn’t been helpful either. For one: whatever my father says, my mother will oppose. Whatever my mother says, my father will call “quack theories.” Neither one of them thinks I know what I’m doing, but neither one of them realizes that -were it not for the fact that we ARE doing things- J would still be sitting in a corner chewing on his big toe to entertain himself while everyone decides what the best way to go is. The times I’ve tried to argue this point I’ve run into that mentality that tells us we will never grow up in our parents’ eyes. To them I’m still eleven years old and talking to Herman the Pet Rock while listening to Fleetwood Mac and eating Snickers up in my bedroom.
“There is this book they use to diagnose…” The D.S.M., Dad. “Um, yes…the (and he breaks the name down into each and every word, quoting from the article) and if they change the definition there then J will no longer be considered autistic.” Well, Dad…for one, J will probably still hit all the marks required for what they would change the definition to, and -even if he doesn’t- we would still have to continue the same degree of efforts to help him. Silence on the other end of the line. “Dad?” “YES!” “Madonna’s from Michigan; it doesn’t matter how much she affects that phony British accent, she’s still from Michigan.” “Who?”
I am more concerned, to be quite sincere, with the young parents who don’t yet know their child is autistic and who will face a doctor who will say “according to this book your child is perfectly fine and there’s nothing to worry about.” I know what we do, and we know where we’re heading with this. The book won’t change a thing for us because we don’t entirely rely on the system to help J. But what about those other kids out there? What will happen to them and to their parents?
The article quotes someone as saying that re-defining Autism will “nip the surge in the bud.” That’s like saying “well, if we stop calling this a weed, we won’t have to get down on our knees to pull it out of the ground. It will then stop being noxious!” I don’t know, but for “very smart and educated people” that’s just plain dumb.
I have to go now. I have to read this article, refer back to the current definition in the D.S.M. as it stands unrevised and get ready for tomorrow’s phone call asking if I’ve “done the homework” so I can explain why, even with a new diagnosis, the PECS boards (which I’ve been explaining for years and dad still thinks are dumb) and sign language (which he thinks stands in the way when we could use something “wired”) will still be necessary… It’s a good thing I have post-its, highlighters, and I am well-trained in making a slide presentation to properly illustrate my points…
Like Ryan Adams sings in J’s song choice for last night (Whiskeytown’s “Don’t Wanna Know Why”) “breathe in, breathe out…carry on, carry out.” Sigh…