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Wednesday
Feb222012

Autism Speaks Doesn't Speak For Our Family

I don't think I've ever addressed this here. I need to. It's important. It's about neurodiversity.

My son's brain doesn't work exactly like mine, and that is okay. In fact, we like it that way. We don't want to change him. We appreciate his differences.

Is it always easy?

No.

Does the world need more people like him?

I think so. He's a pretty interesting dude. He brings a lot to the table.

Does he need a cure from a disease?

No.

Does he need to be fixed?

No.

Should we prevent children being born like him?

No.

Is there an epidemic?

Depends on how you look at the statistics. Which version of the DSM are you using? He would have been called something different in each one.

I do not donate money to Autism Speaks.

They do not speak for my son.

Fortunately for my son, he has a voice that he is able to use to speak for himself. However, just because a child isn't able to use his voice doesn't mean he has nothing to say.

Think about that.

Brains are complex, interesting, unique things. They aren't puzzle ribbons.

Here are some valid, concrete concerns about Autism Speaks as an organization:


  • Autism Speaks' advocacy is based on the view that autism is a disease, a viewpoint not necessarily shared by autism scientists and certainly one not shared by many autistics.

  • Autism Speaks perpetuated the myth that vaccines cause autism, contributing to reduced vaccination rates and the deaths of young children from vaccine-preventable diseases.

  • Autism Speaks uses fear-tactics to raise money. Case in point, their video I Am Autism, which personifies Autism as a child-stealing criminal.

  • Autism Speaks has an agenda of eugenics; they want to screen prenatally for autism and, according to their co-founder Susan Wright, "ultimately eradicate Autism for the sake of future generations."

  • At last report, Autism Speaks had no representation from the autistic community on their Board of Directors. None. How do you speak for a people without the people? Is the NAACP made up of white people? I think not. Is NOW run by men? It is unheard of for an organization representing the disabled and disinfranchised to not include those effected in their decision-making members.

  • If, somehow, none of this bothers you, at the very least, you should have some concern that according to their 2010 annual report, Autism Speaks spends OVER HALF of their proceeds from their collected contributions to pay management salaries.


What's the alternative?

 

There are a number of organizations that include the autistic community in their governing bodies and work to advocate for their rights as neurodiverse people, services for children AND adults who needs them, and research that is meaningful in finding out HOW brains work to determine best-practices for assisting people who need it and want it, not in the view of autism as a disease or dysfunction, but as a difference.

Here are some of those organization who are supportive of autistics:

 

 

References (1)

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  • Response
    Response: Kristin Orlando
    I think this is a real great blog article. Will read on...

Reader Comments (8)

I am sure I have said it before but I want to repeat it....You are amazing and THANK YOU!

I have never endorsed or agreed with any of the beliefs of Autism Speaks for the exact reasons you laid out in this post.

The fact is, my sons are on the severe end of the spectrum and while they drive me batty from time to time (as any child would.) I would not "fix" them if given the opportunity. I do not see their autism as a curse but rather as part of who they are.

I have always told friends and family that if they want to support an autism organization it is best to find a local family raising a child on the spectrum and offer to pay for a therapy toy or something else that will directly benefit their family.

February 22, 2012 | Unregistered CommenterSunday

sounds like another Komen Foundation........corporate........money grabbers...........unverified bullshit.............next they will sue everybody like Komen does!

February 22, 2012 | Unregistered Commenterjeff

Actually, they do go after people. See the case of the autistic girl who created an "Autism Speaks doesn't speak for me" t-shirt. They threatened her for using the company name and forced Zazzle to stop printing the shirt.

February 22, 2012 | Registered CommenterCalifmom

Seconded. And thank you for putting this out there.

February 23, 2012 | Unregistered Commenterronbailey

We have a relatively new autism diagnosis, even though I've suspected for a couple of years that we were on the spectrum. God, this post is timely. I've only begin looking for resource groups and advocacy groups to learn from, partner with and support. My son's diagnosis doesn't mean he's flawed. I don't see his autism as a condition that begs a cure but rather a diagnosis that gives me the means as his mother to better prepare him for adulthood. He doesn't need to be fixed or cured, he's amazing just the way he is.

February 25, 2012 | Unregistered CommenterBarnmaven

I LOOOOOVE this. I had a past friend ask, "Wouldn't you be SO excited if they found a cure? You could see what he is really like!" I knew she meant well, but it exactly personifies the problem with ASD acceptance in our culture. She seemed STUNNED when I answered, "No." She asked why not, to which I replied, "THIS is who he is. He IS really himself already. There is no alternate brain in there with an alternating reality. If he wanted to "cure" it himself as an adult, fine, but I would be sad because MY son as I know him would be gone forever. THIS is the boy I have raised and bonded with. All of his unique ABILITIES that come with Autism would probably be gone as well. I DO hope for research to find more and more ways to help ASD kids with the things that make life hard or painful. I don't want him to be in pain or struggle so much that he doesn't enjoy life, but he enjoys life VERY much." I don't think there needs to be a "cure" either. I think we need to resolve problems that ASDers want help managing. But that's it. Personally, I think I am Probably actually on the spectrum as well. There are some things I would want to be easier, but mostly I know the struggles have made me who I am, and I love who I am. I do HATE having sensory struggles, but I know there are upsides to having heightened sensitivities as well. I am overly sensitive to most sensory things- not under sensitive. I hope more people learn to be more accepting and accommodating to the ASD community. We don't try to eradicate wheelchair bound people- we make it mandatory to have accessibility and illegal to discriminate. The same, in a sense, needs to be done for our community. I basically mean that our government/society needs to make the public more educated about the WHOLE ASD child, not just the defecits. Have you read "Bright, Not Broken"? Great book- I reccomend it!!!!

March 3, 2012 | Unregistered CommenterJill

I love this article. I definitely recognize and believe that neurodiversity is an important thing and certainly not something to be prevented. That's not to say that autistic individuals don't struggle - they do. But so do many other "normal" people.

I was curious about one thing. You said that Autism Speaks perpetuated the myth that vaccines cause autism (something that makes me very angry! Especially as someone who hates getting needles and needed a pertussis booster because of outbreaks in my area) but that they also advocate screening the unborn for autism and preventing it through abortions. How . . . what? Is it something you're born with, or is it caused by vaccines?

March 23, 2012 | Unregistered CommenterLindsay

Great questions Lindsay. I haven't figured out the logic on their thinking either, but that's where they've historically allocated resources.

March 23, 2012 | Registered CommenterCalifmom

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