Saturday, April 02, 2011

They Don't Speak For Us: A Spectrum Saturdays Post

I've tried to write this post a bunch of times.  It just never comes out the way I want it to.  I don't want to be preachy.  Autism can be a huge pain in the ass as a parent, and I'm pretty fortunate that my kids are fairly high functioning.

But here's my deal:  I really don't like Autism Speaks.

I don't speak for the Autistic.  I don't speak for all Autistic parents.  Some days I'm lucky if I can speak for myself.  But I have to tell you, I do have issues with groups like Autism Speaks.  Why aren't there any adults with Autism on the board?  Why do they have to play on pity on fear to raise money?  Where does that money go?  Why do I feel like they're trying to marginalize my kids?

Honestly, I don't expect my kids to be "cured" of Autism.  And if I had the cure right here in my hand (which, I dont) I don't think I'd use it.  How much of my boys would I lose if I did?  How much of them is impacted by their Autism?  Which isn't to say that they are solely defined by the disorder.  Trust me, they're not.  But Autism is a part of who they are and I love who they are.  All of it.

My job is to give my kids the tools they need to navigate the world.  And they can see this world however they want to.  Today Ciaran used the toilet.  Something he does most of the time, these days.  And he made sure to lift his skirt so he didn't pee on it.  Go Ciaran!  See?  He's doing awesome!

This will not destroy me, my children, our family, or our lives.  Autism Speaks does not speak for my children, my family, or me.

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  1. I wholeheartedly agree! I've posted similar sentiments in posts about vaccinations. I know you aren't down with vaccines, but while I don't know what causes autism, I know it ISN'T vaccines. If people have reasons to not vaccinate, that is their decision. But when I keep hearing people who don't vaccinate SOLELY because of fear of autism, it drives me totally nuts. I'm sorry, but I'd take my autistic daughter over losing a child to polio or any of the other preventable diseases! Those can kill, autism cannot.

    Anyways, I just wanted you to know you are not alone in detesting the fearmongering and desparation/pity pleas that so many people have going on. I'm thankful that I'm able to accept my daughter "as is" and not go scouring the earth for every crackpot theory available to "cure" her. She's amazing, and I'm certain your boys are too!!

  2. You're not the first Autism Mom to tell me that, Claire, but I still appreciate hearing it. I wonder if there aren't many more of us out there, who don't feel comfortable speaking up about what we think, or our support of those with Autism who are doing an amazing job at self-advocating.

  3. Right there with you. The goal needs to be bringing Autism into the mainstream, not - as you say - marginalizing our kids even more than they already are.

  4. I love the name of your blog, Caitlin, "Welcome To Normal, Population 0" To be honest, my kids were always going to be different. They're mine. I'm a proud geek who takes her kids to Sci-Fi/Fantasy Conventions. I don't need to make them "normal" I just need to help them be themselves. Thanks for stopping by!

  5. Autism can kill. It's autism that sends them wandering, often times into the street or water they can't swim in. Autism can kill when you're being restrained at school by untrained professionals and they suffocate you. Autism can kill when a parent has reached their last ounce of sanity and drowns their child in the tub.

    Let's not pretend the risk of death for a child with autism isn't much higher than a typical child. Measles, mumps, rubella, polio aren't as deadly as you'd like to make them sound. Honestly I'd gamble with them any day of the week to give my son back his voice, to take out his feeding tube, to give him friends, to get diarrhea off my sofa.

    If I had the cure for autism in my hands I wouldn't have to think twice about using it. I'd free him of the bonds of autism that have stolen his voice and his chance to have a life just like yours. I'd cure the chronic pain from GI issues he lives with.

    I don't care that my son doesn't fall into "normal" but what he lives with is unfair. I don't care for Autism Speaks either. I think some of their videos have been honest. It's not always easy. Sometimes it's downright hard. My son wakes us at 2:30am every day. EVERY DAY! There is a lot my family can't do because of autism. We love him beyond measure but I'd give anything to free him and us of autism.

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  7. Angela, I do hear what you're saying. You have a very valid point and perspective.

    Please know that I do NOT think I'm speaking for every Autistic person or parent I agree with you that [i]every[/i] child should have their voice, and every parent should have the support they need to be the best parents possible to a child with Autism. Sadly, I think groups like this focus so much on a "cure" or on wiping out Autism (they hope eventually through prenatal testing that will allow termination) that they miss the opportunity to make things better for real families, right now. And isn't that what we, who deal with this issue really need most? Whether we can cure it or not?

    I think it's totally fair to want to be free of things that make a child's life harder, that it's fair that other parents wouldn't think twice by waving that magic wand and making it go away, especially if their children are more profoundly affected.

    And I sure as hell don't want to spend my time fighting with parents who have enough of a fight going on as it is. It's not worth it. I will support 100% anything meant to make our kids lives easier.

    Unfortunately, I don't think that's what Autism Speaks is trying to do. And so, I will join with the Autistic community that has spoken out against them.

  8. I don't want to fight either. :) I just want my son to get better! I have more to say but way too tired to do so in a meaningful way without sounding studpid. So till tomorrow....

  9. I want your son to get better, too, Ang. I know you've fought like hell for him, and he's had a rough road. {hugs}


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