(I wrote this a couple of months ago and then sat on it. Pulled it out again…yup. Still feel the same way.)
I am filled with inchoate emotions that resemble rage, outrage, disappointment and frank disbelief all zapped in the Vitamix. I can’t tell where one strong feeling ends and the next begins. I made the mistake of tapping into two mainstream-ish features on autism. The first, a radio show on podcast from the local NPR station about Autism Rates on the Rise: Is it real? Better diagnosis? What should we do? Then later in the day, because that wasn’t enough battering, I read a piece on io9.com about how Autism is Changing the World for Everybody.
First, the local show: I have had to listen to it in dribs and drabs because I simply cannot listen to it straight through without screaming at my iPod. Musn’t scare the children.
A local mom who has fashioned herself the thinking/science person mom (Clever! Because if I disagree with you, I must not be thinking!), but clearly not a revolutionary thinker, posits that it’s better diagnosis and that autism has always been with us. She cites the recent study in South Korea that found a rate of autism of 1 in 38 children. And without missing a beat or even drawing a deep breath, she concluded that this shows autism has always been a part of the human experience.
Holy crap, did she just say that? Indeed. She did. Not just out loud, but on the radio.
No shock, no outrage, no wondering what the hell is going on in South Korea… I still have a headache. It’s another version of repeating something over and over until it becomes the truth. Kind of like my 5 year old telling me we’re buying candy when we go to Whole Foods. Or it’s a Jedi mind game. (These are not the droids you’re looking for. These aren’t the droids we’re looking for. Move along. Move along. Mommy, you’re going to buy me gummi bears. There is no epidemic.)
The show did include a local integrative pediatrician from a well regarded university, who I happen to know has attended a Defeat Autism Now! Conference and regularly treats children on the spectrum biomedically. He was so careful that he lacked teeth. He did get a few comments in about regressive autism, which is better than nothing. Le sigh, to quote Tom and Lorenzo (fabulous way to escape anything autism related, BTW).
OK, so then the io9.com article to cap off the afternoon. Read it here if you can stomach it. Maybe it’s just me.
By narrowing the focus of the discussion of autism to the tremendous and life changing contributions of a few people alleged to have Aspergers, ( thank you Mark Zuckerberg for Facebook. <3!!) the spotlight is on the exceptions to the rule. Not a lick was said about the kids who can’t communicate, and who will be, at best, under- or unemployed and dependent on their families for daily survival. Nothing about how the states are completely unprepared for the wave of young adults about to hit adult services. Not a word about the crushing cost to families. Not a word about the alarming rate of increase–1 in 54 boys. Nothing about the lack of appropriate services at every age level. And nothing about the fact that MOST kids on the spectrum, even the very high functioning ones, actually AREN’T geniuses. (And don’t send me that Einstein quote that’s all over Pinterest about fish and swimming and genius. I get it.)
Please, stop romanticizing the nerd so freaking much.
By accepting this new normal, we completely zap the urgency to address the national crisis. And it IS a crisis. It’s not just about changing the DSM-V so 65% of kids lose their diagnoses. It’s about taking the bullets out of our guns. In the new normal, there is no need for any research that shows, for instance, the dysregulation of brain function in the face toxicity or how a dysregulated immune system causes changes in the brain that are expressed through altered behaviors. There is no need to look at or discuss the fact that some kids recover. Money is going to continue to be funneled into genetics (because genes don’t change) and away from environmental causes (because, shhhh! environment can affect gene expression). In this new normal, we don’t have to try “to fix” anything, heal anything, detox anything. And if we try, the thinking person moms and the science-y dads and the judge-y media can play the Bad Mommy, You Don’t Love Your Child card.
I’m going to play my fan-girl card and use the Matrix analogy. Once again, I feel like I took the red pill and woke up to what’s really going on. It’s scary and it’s ugly, but I’m not going back. I’m going to fight the Matrix. I’m going to be the nutty mom who doesn’t want autism to be the new normal. And I say this as the mom of a recovered kid who is so awesome, so sensitive and handsome it would crack your heart wide open.