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Why I am Against Autism Speaks (and you should be, too)

05 Mar
Why I am Against Autism Speaks (and you should be, too)

Edit 6/20/14 I have updated this and created a new and hopefully better sourced and easier to read document.  Please go here:

https://thecaffeinatedautistic.wordpress.com/new-autism-speaks-masterpost-updated-62014/

(TW: Ableism) Autism Speaks is the most well-known autism charity.  They have the most media coverage and are endorsed by many celebrities, but this certainly does not make them a good organization.

  • Autism Speaks does not have a single autistic member on their board.
  • Autism Speaks only spends 4% of their budget on “family services”.
  • Much of Autism Speaks’ money goes toward research, and much of that research centers on finding a way to eliminate autism, and thus, autistics (which will likely be done through a prenatal test, in the same way that the Down’s Syndrome test is conducted).
  • Autism Speaks produces advertisments, small films, etc. about what a burden autistic people are to society.
  • Autism Speaks was responsible for “Autism Every Day”, which featured a member of their board talking about contemplating murder-suicide of her daughter in front of her daughter. This has now be removed from Autism Speaks’ Youtube channel.
  • Autism Speaks is responsible for the atrocity known as “I am Autism”, a short film produced by the same person who directed the 3rd Harry Potter movie (yes, really) and features an ominous voice saying things like “I am autism…I know where you live…I work faster than pediatric AIDS, cancer, and diabetes combined…I will make sure your marriage fails.”

In short, Autism Speaks is a very large part of the problem; they create a stigma that makes it far more difficult for actual autistic people like myself to be heard, to have our opinions matter, and to fall anywhere outside of the “autistic angel” and “screaming, violent, rocking in the corner autistic” stereotypes. In addition, for them, as well as many other organizations (and the media), autism is considered to be a child’s disorder/disability, and you will often hear people say “where are all the adult autistics?” I can’t tell you how many times I’ve heard that in the past 5 years or so. The answer to that is simple!  We’re right here in front of you.  We may have been misdiagnosed as children with learning disabilities, intellectual disabilities and the like when the diagnoses of autism, PDD-NOS and Asperger’s weren’t as precise (or even existent) as they are now.  We may not have been diagnosed at all and simply treated as though our difficulties are our own doing. We vary in where we fall on the spectrum, though functioning labels are gross and you shouldn’t use them.

For further reading, here are a few resources about Autism Speaks:

Here are a few other terrible things that Autism Speaks has done recently.

  • This woman’s job offer was rescinded after she asked Autism Speaks for accommodations in caring for her autistic son.  They refused, and she made necessary accommodations for childcare, but they withdrew her offer anyways.
  • Autism Speaks shared the news of Google removing hate speech regarding autistics from Google’s autofill feature, completely erasing any mention of autistic people’s flashblogs having anything to do with the change.  It was only after a member of the autism community (and not a parent, but an autistic person themselves) spoke with a reporter about the flashblog and a statement was released to the media that Google decided to make this change.
  • Autism Speaks highlighted AAC use, while erasing those those who actually use AAC devices to communicate.  The focus was on the caretakers, not on the autistic people themselves. (The attached link has a link to a rebuttal by a nonspeaking autistic person, Amy Sequenzia).

There are a number of corporate partners — big businesses (for the most part) who align themselves with Autism Speaks. This can take many different forms, but in general, you should consider that a purchase to any of these companies may benefit Autism Speaks. The list is as follows (thank you, austryzor):

  • ATA Martial Arts
  • Bachman Pretzels
  • Bob’s Red Mill
  • Build A Bear
  • Capital One
  • Casey’s General Stores
  • Continental Accessory
  • Dollar General
  • Dover International Speedway
  • eTrak
  • Fashion Bug
  • FedEx
  • Fox Sports
  • GAP
  • Joe’s Crab Shack
  • Kid Natural Hero
  • Landscape Structures
  • Lindt and Sprungli
  • Mattress Warehouse
  • Med Claims Liaison
  • Modell’s Sporting Goods
  • Panera Bread
  • Pump it Up
  • Queens Flowers
  • Scentsy
  • Shoprite Supermarkets
  • Sprouts Farmers Markets
  • Stadium NEST Fragrances
  • Stella & Dot
  • The Home Depot
  • TJMaxx
  • Total Wine and More
  • Toys R Us
  • White Castle
  • Zales

Some people have contacted me with requests for what organizations actually do help autistic people.  There are a few, in fact, that actually focus on autistic people, and not just autistic children. The final two are actually general disability organizations, and not specific to autism.

The Autistic Self Advocacy Network is pretty much the best choice.

The Autism National Committee

Autism Network International

Autism Women’s Network

TASH

ADAPT

 

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119 responses to “Why I am Against Autism Speaks (and you should be, too)

  1. yooo (@twineaccount)

    March 27, 2015 at 9:24 pm

    I am autistic and I don’t care. I honestly would jump for joy if a cure was found. This illness, this disease–yes, I dared call it those words! Sue me!–ruins my life every day. I would give my arm for a cure. I have never seen anything that Autism Speaks says that didn’t ring true for me, and I support everything they do. I AM AUTISTIC AND I SUPPORT AUTISM SPEAKS. SUE ME!

     
    • thecaffeinatedautistic

      March 27, 2015 at 9:42 pm

      No, I won’t sue you for your personal stance. I will say that you don’t really give much of a crap about your fellow autistic people, the people who are like you, if you don’t care what we have to say. I don’t think every aspect of Autism is awesome all the time. But I’d rather be respected for my humanity rather than disrespected and told it’d be better if my family tortured or killed me.

       
  2. infinitypinkie

    March 31, 2015 at 12:31 am

     
  3. Hanyuu “XernVeltal” Higarii

    April 2, 2015 at 1:46 am

    I have Asperger’s. I actually found this out in the 7th grade. Asperger’s is a form of Autism Spectrum disorder. In my case, this affects mainly my social skills and emotions. Some symptoms can include avoiding eye contact, lack of empathy and more (full list is here: http://www.webmd.com/brain/autism/tc/aspergers-syndrome-symptoms ) Also, in my case, this has benifited me with a gifted mind, which I believe is related with the follwing quote from the link “Be preoccupied with only one or few interests, which he or she may be very knowledgeable about. Many children with Asperger’s syndrome are overly interested in parts of a whole or in unusual activities, such as designing houses, drawing highly detailed scenes, or studying astronomy. They may show an unusual interest in certain topics such as snakes, names of stars, or dinosaurs.” I do take part in unusual topics for my age, including my own unbiased opinions that could work in political debates, such as the recent Religious Freedom Restoration act. I have interests in visual and performing arts, game design, and writing (which I admit get in the way of my academics a few times). Now, let’s get to the point I really want to make. Just from reading this, it scares me to know that these people think I’m a burden to society. Now, honestly. From what I was willing to share to you, dear readers, do you think an adolescent who is a good writer,does well in the field of arts, wants to become a video game developer (I plan to keep the games below rated M, fyi) and can actually create a detailed debate on certain political topics that shows both sides of the story a burden to society, just because of something that’s out of my control?

     
    • thecaffeinatedautistic

      April 2, 2015 at 1:56 am

      There are people who would view you as a burden on society. I don’t believe that any person is a burden, and it doesn’t matter whether you are diagnosed with autism or Aspergers or something else. It doesn’t matter whether you are productive enough. You are a human being worthy of love and respect.

       
      • tonglenandtea

        April 6, 2015 at 11:40 pm

        “You are a human being worthy of love and respect”. Spoken so eloquently. The world needs more peacekeepers like you . The world needs you, you who takes a stand for those with autism like yourself (some of which who cannot do so for themselves). You are an example of someone who challenges the autism stereotype. The idea that autism is misrepresented and funds are not allocated effectively to help those who need it, is a great discomfort to me. That anyone would advocate that individuals with autism are less deserving of life or that it is acceptable to kill or harm someone with autism is appalling. We should all be so lucky to know someone with autism. This obsession with everyone in the world having to be the same, needs to stop. It takes all kinds to make a world and I would rather that world be a rainbow of authenticity , rather than one devoid of unity ,ostracizing the colour and light within each and every one of us that should be celebrated in the first place.

         
  4. Trinity Lepeprt

    April 26, 2015 at 7:23 pm

    it would be a much better article if you added more sources to where you got your info.

     
    • thecaffeinatedautistic

      April 27, 2015 at 5:56 am

      How many sources would you like? 100? 1000? There’s a ton in the text of the post. Try clicking on the words with hyperlinks, maybe. Or use Google! It’s not hard to copy a phrase from my post and, you know, paste it into a search engine.

      Really, what do you expect? This is a basic master post. It has links. Use them. I’m not going to hold your hand the whole way while you figure out this shit for yourself.

       
    • thecaffeinatedautistic

      April 27, 2015 at 5:58 am

      In addition to that, there’s an even bigger master post with links and more details linked in the very first line. Please, stop demanding that people hold your hand when it’s laid out there for you.

       

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