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Why the Autism Community Needs an Ice Bucket Challenge

20 Sep

Every weeknight on my way home, I drive past a blue porch light. As you’re most likely aware, that blue light is a symbol of autism awareness. Mission accomplished: I’m aware. Then, I pull into my driveway, park my car, go to bed, awake the next day and repeat. Oh, there’s that blue light again – I’m aware again. Eventually that blue light joins my overly color-saturated life as a Christmas decoration, an Open sign, a flashing police siren. “Lighting it up blue” fades away.

Ice-cold water, on the other hand, sticks around just a bit longer. When damp clothes dry and chilled bones warm, why not relive that glorious moment. A video clip is no doubt on Facebook or Youtube for others to enjoy, to “like” and “share”, and to create a visual phenomenon so contagious that more elaborate schemes have been created, more embarrassing moments gloriously shared, more friends and family nominated, and more wallets opened.

To the tune of $114 million.

In less than one year.

Congratulations are due to the ALS Foundation. Amyotrophic lateral sclerosis is a devastating disease worth funding, attention, and education. Nay-sayers criticize the challenge for many sound reasons, none of which I care to address.

What I care about, what confounds me, and what royally pisses me off is why such a phenomenon has yet to bubble up in the autism community. Sure, we’ve had celebrities with children with ASD and television shows depicting the spectrum. They’ve put a face to the cause. They’ve funded the cause. They’ve spread awareness. But, that’s them. Not all of us. Not your next-door neighbor dumping water on his son. Not your daughter’s teacher who nominates her class and parents. Not your child dumping water on you.

The ALS Ice Bucket Challenge brought ALS into our homes and our lives. Sure, donations seemed secondary to “fun” but $114 million talks.

Autism speaks, too, right?

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4 Comments

Posted by on September 20, 2014 in Uncategorized

 

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4 responses to “Why the Autism Community Needs an Ice Bucket Challenge

  1. chavisory

    September 21, 2014 at 1:25 PM

    I actually can’t agree…there is a TON of money tied up in autism research right now. It’s just that by and large, it’s not being allocated in such a way that would actually improve quality of life and opportunities for autistic people. It’s not going towards what autistic people say we need and want for our lives. (It’s going towards figuring out how to prevent us from existing.)

    The money is there. It’s being horribly misused.

    Also, it’d be more than a little ironic–although it happens all the time, really–for a fundraiser for the needs of autistic people, to be inaccessible for autistic people to participate in, since so many of us have intense sensory experiences. We probably can’t be dumping ice water over our heads. Frankly it’s not something I’d want to see being done in our name.

     
    • jholverstott

      September 21, 2014 at 9:19 PM

      Chavisory — Therein lies my point. There is no money helping those who need it most. An actual ice bucket isn’t the goal, just something that becomes iconic.

       
      • chavisory

        September 21, 2014 at 9:24 PM

        I dunno, I kind of feel like the situation doesn’t translate from the ALS community to the autism community. Because again, it ISN’T that there is no money–organizations claiming to speak on our behalf (*cough*Autism Speaks*cough*) have a LOT of it. I don’t think we need a stunt to raise money as much as we need the mostly non-autistic people who set research priorities to, like, see us as people, and listen to us.

         
      • jholverstott

        September 21, 2014 at 10:25 PM

        Agreed. It’s just a matter of how, and it seems like “stunts” like the IBC are it.

         

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