Proud to be a Filthy Liberal Scum

Loud, Proud and I don't care about hurting a conservative's feelings!

Sleepy Time Thought 3/21/2012 Autism Edition

This isn’t a political post but it’s been nagging at me for a few days. As you may or may not know, my son Jordan has mild autism. I take him to speech therapy twice a week and while he’s in with the therapist, I chit-chat with the mothers in the waiting room (they’re almost ALWAYS mothers for some reason). One of them told me about how her son developed autism before his first birthday, after he had learned some words and had a vibrant personality of his own. Slowly but surely, he lost his ability to speak and he became a blank slate. All traces of the child he had been disappeared behind the wall that is autism. It must have been like watching her son die.

I know other children develop ASD around their second birthday and my daughter, Anastasia just turned 2 last month. She is a loud and happy and energetic kid. Were she to suddenly withdraw it would be like a knife in my heart. All traces of who she was would be gone forever if it was severe enough. We were very lucky with Jordan; not only is his ASD very mild but he developed it very early on. He only spoke three words before his speech went away and his personality never altered because he hadn’t really developed one yet. He is who he’s always been. We’ve never faced the anguish of losing a child and having it replaced with a stranger. It wouldn’t surprise me if this is where the legend of the Changeling comes from.

I raise this issue because autism is a widespread and extremely poorly understood problem. While the Irish Wench and the Moderate Conservative can literally writes books about how to deal with the effects of autism, medical experts are still in the dark about the causes of autism. They know part of it is genetic but not necessarily what triggers it and certainly not how to avoid it or, the Holy Grail, reverse it. Yet, it receives crap for funding. These are the statistics from Autism Speaks, one of the premiere advocacy groups:

  • Leukemia: Affects 1 in 1,200 / Funding: $277 million
  • Muscular Dystrophy: Affects 1 in 100,000 / Funding: $162 million
  • Pediatric AIDS: Affects 1 in 300 / Funding: $394 million
  • Juvenile Diabetes: Affects 1 in 500 / Funding: $156 million
  • Autism: Affects 1 in 110 / Funding: $79 million
This is not a rational distribution of monies. I can only hope that as autism awareness grows, it becomes more of a priority.

Sleep tight you filthy liberal scum!

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8 thoughts on “Sleepy Time Thought 3/21/2012 Autism Edition

  1. Michael Ian Kocwin on said:

    Please know I am just stating my opinion on the reasons here, not what I think or feel about Autism Spectrum Disorders and the effects they have on family and friends and the sufferers themselves.

    Autism is just not sexy, to use a wildly inappropriate media term. Leukemia kills, you have those awesome photos of bald little chemo kids with heartwarming wan smiles. Muscular dystrophy, you see pictures of kids seeming to suffer from horribly disfiguring physical effects. Diabetes, you hear stories about kids stoically learning to watch their intake and bear up under needles from a very young age, every damn day. And AIDS… well kids with AIDS are born with an hourglass that is two thirds empty.

    Autism, in the terms of our stupid, insipid, modern society, is just not sexy. It doesn’t sell, it doesn’t pop. You will rarely see suffers of Autism Spectrum Disorders outside of comedies, or occasionally as the murderer on Law and Order who honestly does not understand what they did wrong. Your story, heartbreaking as it is, is not cute enough, but nor is it OBVIOUSLY tragic enough.

    Again, I hope you know I am just stating why I think this lack of funding is.

    • that’s just the thing–it really ISN’T heartbreaking or tragic (speaking as an Autism mum)–it’s just different. And to neurotypicals (that is “regular” folk) its a tad annoying (meltdowns, a perceived lack of emotions, etc)

      but you’re right–it isn’t “sexy” enough to garner the attention that those other disorders garner. That is until they do amazing science/math or artistic work. And even then the attention is short lived.

      Thus, some mums, like myself, use blogs to continue to try to draw as much attention as we can (and vent our frustrations). The more attention we garner, hopefully the better off we can be.

    • I completely understand what you are saying and it depresses me that every word is 100% correct. Reason #5647023 that American society sucks.

  2. Just wanted to say blessings from a fellow Autism Parent. 🙂

  3. perhaps we have to just keep growing in number for the powers that be to stand up and take notice.

    Also–there is SO MUCH infighting within the Autism community about cause/treatment/therapies etc that we fail to provide a united front. Many of us with Autism blogs find disagreement with the mildest of statements sometimes.

    I watched a documentary a while back about medications and ADHD–which is often a comorbid disorder–and one scientist suggested that we need to treat ADHD like cancer–that is, EVERY child who is diagnosed becomes part of a study so that ALL data gathered becomes part of our national knowledge. And i think think we should treat Autism the same. There seem to be so many different KINDS of Autism that we cannot come to any terms on how to treat or its possible causes.

    But we are growing, unfortunately or no–and eventually our voices will be loud enough.

    Glad to be a member of your community–both liberal and Special needs. 😉

  4. I think Michael I. K. above has nailed it.

    I personally know 4 different children with autism all varied and only 2 are from the same family (cousins). The range and differences between the sufferes makes it easily incorrectly categorized which I am sure colors how people respond (or don’t respond) to them.

    Sad truth is the general populace is just uneducated, uninterested, and mystified by something that does not fit neatly in a stereotypical box.

    For my part, I am lucky to have learned early of the range, and make a point of sharing what works (and what doesn’t!) when given the chance.

    As to the cause. I am firmly deeply convinced that there must be something environmental and or food allergen that contributes to it.

    I hope it gains support for better funding and more vigorous research.

    An B.

  5. Lisa B. Hawkes on said:

    My daughter was diagnosed as being “severely autistic” at 3. I couldn’t bring myself to believe it. It had to be a misdiagnosis. She doesn’t sit in a corner rocking, I thought(not being well read on the subject). This girl smiles, laughs and runs up to strangers in the store and gooses them(true story). I could live with the use of the label “P.D.D.” more easily for some reason.
    I pray that the school system that you’re dealing with is employing the patient & caring kind of individuals that my daughter’s had. I swear, it makes all the difference.
    Today my 14 year old is a polite, thoughtful, well adjusted & happy Honor student.

    Justin, my heart goes out to you. It gets better. Promise.

  6. matthew wright on said:

    There was an episode in West Wing where the president was trying to pass a bill and a senator from the other side of the aisle started a fillabuster and no one knew why. Turns out he was trying to add an amendment to fund autism research to the bill because his granddaughter suffered from it. Once this was realized, the president joined in the fillabuster against his own bill and kept it up until everyone agreed to the senators attachment. Brought tears to my eyes and still does . A shame it didnt really happen..

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