The Truth Behind Autism Speaks

autism-speaks-doesnt-speak-for-meMany of you have probably heard of Autism Speaks, an organization that wants you to think they wish to help autistic people or families with autistic children.  That is far from the truth.

Last year, Suzanne Wright called out a summit in Washington, DC.  She said families of autistic people “are not living.” She portrayed them as living in fear of their children.

I would’ve provided a video of their propaganda, but of course, they got it removed from Youtube after word got out about the video’s true intentions.


What Autism Speaks really wants is a cure for autism. Here’s what fellow autistic blogger Tom Plastow has to say about that:

Autism is not a disease, it’s not a sickness, and the vast majority of autistic people do not want to be “cured.” Autism is a huge part of us, and removing it would radically change us as human beings. When you talk about “curing” autism, you are talking about eugenics. You are not helping us, you are not supporting us, and you are certainly not listening to us.

We don’t want to be changed, we don’t want bleach enemas, hug therapy, or to be treated like we’re dogs to be trained to your standards. We want to be listened to. We want to be accepted. We want to live in a world where people don’t see us as burdens that need to be eradicated so that “normal” people can have easier lives. We are not a public health crisis that needs to be stamped out; we’re human beings with – believe it or not – real emotions and thoughts of our own and everything.

In 2010, the organization only spent 4% of its budget on “family services.” NOT ONE STAFFER is autistic. How can an organization truly claim that it speaks for autistic people when it doesn’t have an autistic person on its staff or advocates a cure that autistic people do not even want?

Parents have been misled by this organization. Here’s an account by Sandy Kinnamon, found on

I thought it might be helpful to give some personal context as to why I don’t support Autism Speaks and am participating in efforts to boycott them.

My daughter was diagnosed as Autistic May 2012. I was scared and knew nothing about Autism, nothing positive; anyway, of the little I did know.

I was given Autism Speaks 100 days kit, which did have some helpful information. So, I decided to view their website, since I‘d heard of them, but knew nothing about them. As I began to look around their site, I became increasingly uncomfortable with what I was reading. What they were saying didn’t appear to describe my daughter at all. And it only further terrified me and I began to feel my despair deep. By the time I saw the video of called “Autism Everyday”, here ,where Judith Singer spoke of driving off a bridge with her Autistic child, but remembered she had a much more valuable, “normal” child to be there for, I was completely horrified and wondered if one day I would feel this way. If Autism was THAT bad?

It briefly led me to groups that weren’t at all helpful or accepting of their Autistic children and even more desperation and depression engulfed me as I tried to figure out how to save her from this cursed affliction.  But one day she looked into my eyes with so much love and affection and I snapped out of my haze and again SAW my child. This child I worked years through secondary infertility to get. And the more other Autistic children and adults I met, the more I knew these were dreaded lies, awful mischaracterizations of every person on the spectrum. These people were loving, affectionate, bright, intelligent, funny…challenges, to be sure, but in direct opposition to Suzanne Wright’s “Call to Action”here stating emphatically they are burdens, with families that aren’t living, but barely existing, they are lost, missing, diseased and gravely ill. None of the people I know are ANY of those things, including my daughter.

This is not an organization that anyone should support, especially the government. (Then again, this is the same president who asked God to bless Planned Parenthood, an organization founded by Margaret Sanger, who was an advocate of racism and eugenics.) Fortunately, there are indeed organizations that will assist those with autism.  I have a link to ASAN (Autistic Spectrum Advocacy Network in my blogroll. Also, former Miami Dolphins quarterback Dan Marino has started his own foundation when he found out his son had autism. Boycottautismspeaks, which I referenced earlier, has a list of companies that fund Autism Speaks. They should be joined in their boycott. Let the word go out: They do NOT speak for us.


Author: rocklobsterjwt


8 thoughts on “The Truth Behind Autism Speaks”

  1. I wholeheartedly agree. When I read the whole “they are not living” thing for the first time, I was distraught at how somebody could say something like that. It actually pushed me to be more open about who I am and what being on the spectrum is like.

    1. It truly is a shame that some would rather a perfect society exist, despite the fact that perfection cannot exist within humanity.
      By the way, how old is your brother? You mentioned on your site that you watch kid-friendly stuff with him because it’s easier for him to understand.

      1. He’s about 20 or so. I’m the oldest of three.

        Now that you mention the “perfect society” thing, I’d be interested in hearing your thoughts on the Derpy Hooves debacle.

      2. I think it really got out of hand. If Derpy Hooves is supposed to be disabled, I wouldn’t be surprised to hear a slurred voice. It seemed realistic to me, and I liked it. I’m VERY glad the debacle appears to be over, because now she is back, but silent. I think it is a shame that she can’t talk (apparently), but it seems they are taking the path of least resistance, as giving her a new voice would disappoint the fans. This is baby steps right now, and I’m sure she will get the spotlight again.

  2. I see this whole view of autism as simply another way that people are changing to demand that all things be accepted by social standards. I love autistic kids and have taught them for almost 9 years (the severe and profound range) and without early intervention by the adults in their lives they cannot even function in society with any success. As to the higher levels (which I have not taught) I reference Temple Grandam (winner of a Nobel Prize) who once replied to the question “How did you make it?” by stating that she “made it” meaning was able to be her own person and even make a difference in the world, because of a teacher who REFUSED to allow her to remain in her own autistic world. This teacher, she said, would not allow her to indulge in stemming or “disappear” into her own world. This teacher MADE her join in with classroom activities and interact with her classmates, this teacher MADE her learn to at least recognize social norms and standards.

    The answer to the question of what do I do about autism is not, I believe, to indulge in their inabilities to comprehend social situations, but to teach them how to recognize and respond in a socially acceptable manner. They may never really understand WHY people do what they do, but it at least allows them to negotiate the tricky and intricate world of socially normal behavior without the negative responses that not following social norms will produce. There is an entire thesis paper here that could be done about social norms and acceptance, but suffice it to say that there are basic human responses to body language and facial expressions that I do not see ever changing because they are on a basic instinctive level.

    To allow autistic children to believe that their way of viewing social norms does not help, but damages the potential lives they could have is my personal view. Not because autistic individuals are dangerous or helpless, but because they are the ones who suffer when they go out in the world and find themselves at odds with the very world they want to be a part of.

    Not an absolute answer of course, but just a hint into the fact that autism is much deeper than just, everybody needs to accept autism because they don’t want to have to learn social norms.

    Just my take on the situation and I am not an expert by any means, but I thought I would add my 2 cents. (I might even have change :D).

    1. Becki, your “two cents worth” are made out of 24-karat gold!
      Ritalin is another attempt to put every child in a neat little conforming box.
      The supreme irony is that autism speaks against Autism Speaks, through all the voices of people with autism/Asperger’s like Jason and so many others.
      People are people, not Stepford Wives/Husbands.

      1. You know, I think there was a book where people were born in “boxes” and the whole society was on a drug called “soma.” What was it called again? Oh yeah, “Brave New World”. It’s amazing and sad how prophetic that book became. Almost as if people were taking notes when they read it.

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