Monday, April 1, 2013

How it came to this, Autism Speaks

  Trigger Warnings: Autism Speaks, Autism Every Day video

    As I gathered information about autism on the internet, I came across many divergent opinions and theories from people on the web, both with and without Autism.  Some saying I should be fixed, some saying I should love and accept myself and be happy, and some saying I need to fight.

  Amongst those with autism, having similar lives, feelings and experiences as mine there is much disagreement and debate.  However I noticed one unifying theme:

 Autism Speaks sucks

  I am not one to jump on a bandwagon, so I did not take up the fight against this organization immediately.  However due to the criticism from my Autistic peers that have more knowledge and experience, I dismissed them as a source of reliable information.

  One of the standout reasons for outrage was a video called "Autism Every Day", in which I was informed a neurotypical mom discussed her urge to kill herself and her Autistic child, and did so in front of her child.  I decided to spare myself this sight and take my spoons and research elsewhere.

  I started blogging under the "be happy" philosophy of the three I above listed.  I was (and still am) deeply in self discovery mode.  I read other blogs.  I liked the activist ones.  I felt empathy.  I wanted to get involved, but wasn't sure how, or if I was welcome.

  ASAN's view "Nothing about us without us" is logical.  Why shouldn't people represent themselves?  I made a donation.  I bought "Loud Hands".  I cried

  I learned about the "Autistic People Should" and "Autistic People Are" flash blogs from Yes, That Too.  I decided that was a good place for me to step in.  I was late with my entry because I had no idea what I was doing.

   I was disgusted by that autosearch.  I revealed my self diagnosis to NT friends.  I linked texted them to check that autosearch.  I linked Yes, That Too to them.  They told me not to get involved.  I linked Radical Neurodivergence Speaking to them.  I have not heard from them since.

  I had always been "other", but I had always tried not to be.  When I made it clear that I was no longer interested in contorting myself into one of "them", I became less than other.  "They" do not want me to exist.  People I have laughed and cried with even had a fling with turned their back on me for simply admitting that I had a different brain type.  They erased me. 

  I realized I was in a fight, and my options were to press on, or return whence I came.  Forget this blogging thing, forget activism, forget autism.  Go back to living in the shadows, pretending to be what people wanted me to be.

  I won't lie.  I have considered option B.  I have questioned myself and why I am getting involved.  As Tolkien wrote, "It's dangerous business, going out your door".  It is easy to be a coward.  It kills you, but it is easy.

  The flash blog was a success.  Google vowed to fix the autosearch.  I felt great for a minute.  Then Autism Speaks erased me again.

  They posted a story about the autocorrect on their Facebook wall on 2/28 but gave no credit to the activists.  A lot of Autistic people worked a lot harder than I did on that project.  (Story was updated on 3/6 after a week of protesting)

 For me, it was validation of the belief.  The theory became law:

  Autism Speaks sucks

  I watched that atrocity "Autism Every Day".  I was prepared for Alison Singer's filicidal fantasies.  I was not prepared for the dozens of other ways that video would make me want to vomit.  I was not prepared to listen to an overprivileged mom lamenting the loss of her morning bagel dates because of her autistic child.  I was not prepared for the amount of fearmongering I would witness.  I was not prepared to watch people exploit their children for charitable donations.

  Mothers in a video saying they need help because of their child's autism, they can't socalize because of their child's autism, they can't hold a job because of their child's autism.  And dong this for a charity that provides next to no help (4% of their budget) for families with Autistic children, but provides plenty of rhetoric for hating Autistic children. 

  Yes, you are a sham.

  You could have gotten the support of someone like me.  A guy with a job that hes overqualified for.  A guy looking for support and answers.  A smart guy that doesn't quite get it in social settings.  A guy that is into weird things.  A guy with odd physical gestures.  A guy that is tough enough to survive in a world that does not want him to survive.  A guy with a voice, who is going to use it now against you.

   This is my first Autism Awareness Acceptance Month.  The only thing I'm going to be lighting up this month is your hot bullshit, and it doesn't burn blue.  Trust me.    

I selected this post to be featured on my blog’s page at Blog Nation.

      

 

    

8 comments:

  1. I love, love, LOVE this post. I followed A. S. last year until I realized that they didn't say anything positive about autism at all. And yes, there are many positive things about autism, and I wouldn't 'cure' my son or change a thing.

    I'm not sure whether to laugh or cry about that woman that can't grab a bagel. My son who is only 7 has more of a social life than I do :) He doesn't hold me back, why would he? Autism doesn't hold HIM back...he's a rock star...so why should it impact MY life negatively. There are many people at A.S. that need a smack in the head, IMHO. Thank you for writing this!

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  2. incorrect good sir, Bullshit does in fact burn blue ( Methane), everything else was spot on !!!

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  3. Hurray! Welcome to the neurodiversity club!

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  4. Great to have your voice in our community!

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  5. Loved this piece! This pretty much is similar to me via 2012. First, I discovered an actual online autistic community with actual autistic people. And then, I learned just how bad that Dreaded Blue Puzzle Piece™ really was. Since then, I have donated to ASAN as well, and I'm glad I did. I also look up to autistic bloggers and activists alike for support and wisdom. My hope one day is to be a strong voice in this autistic acceptance fight.

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  6. What a nice surprize after a long week at work. Thanks all!

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  7. Thank you for writing this and welcome to the Autistic community.

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