Good God in heaven - it's been a rough week for anyone who loves a person with autism. I'm rather fond of three girls with autism, my daughters Mia, Gianna and Bella.
Earlier this week, Nancy Pelosi excluded autism from H.R. 3200 the healthcare bill. You can read about that sharp stick in the eye over at Age of Autism. Way to go, Nanc, hope that new grand baby you toted around at your swearing in (kinda like Sarah Palin, doncha think?) is talking and pointing and able to have one formed poop a day instead of seventeen explosive, acidic bouts of diarrhea like some kids I know. I saw you surrounded by your grandchildren. So touching. Really. My mother would like to know why you threw her grandchildren under the bus.
On Friday the 17th, there is a major briefing on Captol Hill on the current state of autism research and treatment (HERE)courtesy of Reps. Carolyn Maloney (D, NY) and Christopher Smith (R, NJ) and featuring both David Kirby (original HuffPo blogger) and Mark Blaxill of SafeMinds. Only 39 of 158 members of the Coalition for Autism Research and Education were signed up to attend as of Tuesday. W-T-F?
Meanwhile, the government will spend $1,000,000,000 for a fast tracked (that's FDA shorthand for holy shit you got this to market how fast and did you bother to test it?) swine flu vaccine for a flu that as far as I can see, hasn't knocked out a small street in E. Elbow, Rhode Island, let alone reached pandemic proportions. I saw a headline this week, "27 Cadets with H1N1 - none hospitalized." Don't go getting all bat guano on me about the Swine Flu - that's not the point of this post. yes, we need to be prepared for an epidemic. And no I don't want children to die of a preventable disease. OK? The point is, that when the US Government feels there's a real (or perceived) threat, or at least an opportunity to accomplish some other goal, they can mobilize money and "stuff" reaaallly fast. Think Iraq war after 9/11 for the Republicans and now H1N1 "prevention" for the Democrats.
So it seems to me that all this autism "awareness" we've been talking about for so many years now hasn't done jack squat to convince our leaders that families are falling apart because of autism. Loved ones are suffering. Kids are creeping up to the end of school. You think turning 65 is scary? Try having a kid with autism about to turn 22 and age out of school - and there's nothing for him to do and no where for him to live. Now imagine you're turning 65 with a 40 year old adult with autism to care for all by your lonesome. Makes that colonoscopy you need every year look like a walk in the park, eh?
A few years back, I had the pleasure of meeting both David Kirby and Suzanne Wright (Founder of Autism Speaks) on the same day at an event in Boston. I asked Suzanne Wright a simple question: "Is Autism Speaks going to find out if we're creating autism in our kids?" (She answered, "yes" at the time, but I've since realized she is a figurehead there and not responsible for the research. Shame). I believe we are creating autism just as we are creating diabetes, nut allergies, cancer, asthma, MS and other chronic diseases.
Frankly, if you still believe autism is fully genetic and you're just "born that way" your head is either in the sand or up your ass. Or, if you've been at the beach recently, it may be up your sandy ass. Either way, if this is your belief, I suggest you stop applying for research grants. You're squandering precious resources that we need to prevent another generation of autism. Get the flurk out of the way. And then read Autism: It's the Environment, Not Just Doctors Diagnosing More Disease" from SFGate.
Autism awareness is not enough. In fact, it's really nothing, as has been proved by the disregard our leaders show toward people with autism. Of all ages.
I'd rather no one I know ever have heard of autism, if it meant my girls would have more treatments to hone in on a cure. Call me selfish, but I sure would like to hear my Bella say, "Hi, Mom. I'm hungry, could I have something to eat?" Or watch my Mia go to a movie with a group of friends. Or wonder how my Gianna is doing at sleep away camp, missing her every minute.
Of course, "cure" is a dirty word for autism. We live in a world where docs will give an 87 year old man a pill to get an erection. They routinely give chemo and radiation to patients with a next to zero prognosis of survival from rare cancers. Fifty and sixty year old women can give birth thanks to new fertility techniques. Heck, my 86 year old Dad was offered heart surgery to correct his heartbeat so he could live out his final years more comfortably. But parents are told, "Take your 3 year old home. He has autism. There is no cure. Get him therapy and call a group home." Unacceptable, friends. Un-freaking-acceptable.
I have a wishlist for autism. First, I want prevention. I don't want another family to go through the hell of struggling to help your precious child with autism. For those for whom we can not prevent autism, I want a cure. Meaning I want those kids to be able to function in the world. And for those for whom a cure is not possible, I want care. Meaningful, safe, dignified care.
It was a rough week for all of us who love someone with autism. What's next?
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