Autism Speaks is not and has never been listening despite their slogan

Autism Speaks, the largest and most powerful autism organization there is with enough real power to make a real positive difference.

Ah to dream.

I mean, don’t get me wrong. They have brought about some big changes and it can be argued that they have raised more awareness than pretty much anyone else in history. But at what cost? And using what methods?

Fear. A lot of fear.

They have a long history of fear mongering with videos that depict autism as a deep voiced child predator or as an epidemic that makes moms want to throw their children off a bridge.  They spend donation money on all those research studies that you hear about in the news that links “an increased chance of autism” to such things as tylenol, c-sections, premature birth, living close to a freeway, being old and on and on and on.

There’s really no point in rehashing history. I’m sure you’ve heard it all before. I’m also sure that you’ve heard about what’s happening this week. Autism Speaks is heading up a “summit” in Washington DC where they’ll call on the government to come up with a “national plan” against autism. Yes, “against” autism.

To this end, Suzanne Wright, a co-founder wrote this piece on the Autism Speaks website: http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

This post, this whole “action plan” is deeply disappointing. It is disturbing, disgusting, shocking and all together frightening.

Putting in bold, in 3 separate places “this is autism” is not just wrong, it’s designed to make people fear autism, hate autism and want to do what ever they can to wipe it out. I’m sure they do not deny this. It’s very clearly the purpose.

It’s a fear mongering tactic.

Now, granted, there are some that have autism that truly are in a great deal of pain, completely incapable of any perceivable form of communication and really could do with some level of “curing”, not such that they’re not longer be autistic necessarily maybe but just so that they are no longer in pain and able to function independently.

That’s fine.

But to say “this is autism” and spout scary numbers and say that “these families are not living” is basically equivalent to turning millions of people into monsters that are to be feared. If they used a child as an example of.. well, an example… that would be different. If they quoted numbers of those that are specifically that bad off, that would be different. But they don’t. They claim “this is autism” over and over again. They attempt to speak for us all. They attempt to lump in those of us that do not need to be spoken for in their big monster horror film.

Sure, Autism Speaks can go to Washington and push for help for those that need insurance and aren’t getting it, they can push for more therapies, research and medication for those that need it.

But there should ALSO be those going along with them to make sure that all the other autistics are represented and accounted for as well. That all the families that have children that need those things but don’t see their child has a monster are represented as well. That all those that are unable to speak but are still able to express an opinion are represented as well. That everyone… absolutely everyone… is heard.

All of us… that is autism. 

There is something amazing to come of this though. The comments. The autistics, the parents, the community… all of those people outraged in the comments,  they give me hope.

This is the message to Autism Speams and to the government and to the world:
We are the voice that should be heard. We are the ones that you dismiss. We are the ones that you attempt to speak for and silence and remove. But we are the ones that matter. We are the ones that need to be a part of what directly affects us.

I have autism, my child has autism and thousands of others just like us are telling you, right here, right now, this is how it really is.

All of us… that is autism.

With that, there’s only one thing left to say:

Hey Autism Speaks… it’s time to listen.

Loving life, not silent, not to be feared, not to be spoken for.

Loving life, not silent, not to be feared, not to be spoken for.

PS

I’m including some other great posts/discussions on this because I believe, as we all do, that we should have the right and opportunity to speak for ourselves.

http://autisticadvocacy.org/2013/11/asan-aac-statement-on-autism-speaks-dc-policy-summit/

http://paulacdurbinwestbyautisticblog.blogspot.ca/2013/11/autism-speaks-kidnaps-policy-summit.html

http://www.mostlytruestuff.com/2013/11/autism-speaks-speak-son.html

http://adiaryofamom.wordpress.com/2013/11/12/no-more-a-letter-to-suzanne-wright/

http://www.blog.mamasturnnow.com/2013/11/12/dear-ms-wright-autism-speaks-and-any-others-out-there-who-may-read-this/

http://theautismwars.blogspot.ca/2013/11/a-mouse-that-roars-standing-in-defiance.html

http://autismandoughtisms.wordpress.com/2013/11/13/crisis-despair-and-everything-else-wrong-with-autism-speaks-call-for-action/

http://www.decipher-morgan.com/2013/11/autism-speaks-isnt-speaking-for-us.html

http://theconnorchronicles.wordpress.com/2013/11/12/autism-speaks-does-not-speak-for-us-this-is-autism/

About Stuart Duncan

My name is Stuart Duncan, creator of http://www.stuartduncan.name. My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.

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14 Responses to Autism Speaks is not and has never been listening despite their slogan

  1. julie carter November 12, 2013 at 6:15 pm #

    thank you

  2. Dmitry Laughs November 12, 2013 at 8:13 pm #

    Mr. Duncan, I read a great article today responding to THIS IS AUTISM over at The Connor Chronicles. Check it out.

    http://theconnorchronicles.wordpress.com/2013/11/12/autism-speaks-does-not-speak-for-us-this-is-autism/

    Thanks for the links to the other discussions! I’m having a hard time keeping up, but I did write my own response; My Son Is Not Lost:

    http://dmitrylaughs.wordpress.com/2013/11/12/my-son-is-not-lost/

    As frustrating as it is, the changes in Autism Speaks aren’t going to come from US, Mr. Duncan. They are going to come from our neighbors, or friends, our relatives and church members who don’t know a whole lot about autism… until we tell them.

    Because that’s where AS has found a firehose of money: guilt money, pity money. From people who don’t know. Autism Speaks won’t change their narrative until the money dries up.

    • Dmitry Laughs November 12, 2013 at 8:16 pm #

      oops looks like you added The Conner Chronicles and I didn’t notice.

  3. Lainie November 12, 2013 at 10:11 pm #

    Thank you for this. It is very well done. Having two sons with autism, we often are looked upon as having done something wrong or to be pitied due to propaganda like this from AS. My children are not something to be eradicated but enjoyed. So what they think and act differently! My life and those around them are better for it.

  4. vmgillen November 19, 2013 at 2:48 pm #

    Frankly, the APA is 100% to blame – the Dx is little more than a collection of symptoms; the current iteration is little more than an expanded billing opportunity.

  5. Fabián Luis Colón Emmanuelli November 24, 2013 at 5:29 pm #

    Autism Speaks is really a HATE GROUP. They really take the biscuit, with such offensive slurs, terms, phrases, quotes and sentences. They believe we are some sort of menace that will kill all “normal” world population in seconds, and must be destroyed as soon as possible.

    The first sentence: “This week is the week America will fully wake up to the autism crisis.”

    It is very offensive and insulting. CALLING US A CRISIS, suggesting that we are like Poverty, Drug Addiction, Criminality, among other REAL crises.

    OH, FUCKING SHIT!!! REALLY INSULTING!!!

    The second sentence: “If three million children in America one day went missing – what would we as a country do?”

    ANOTHER HATE SPEECH!!! I am on the spectrum (PDD/NOS), and I EXIST LIKE I AM!!!. This quote is Very Insulting, and Pity-Spreader. People will perceive autistic people as not really existing, but a human-shaped body, which can act by their own behalf, doing “bizarre” things. Autism, by this fucking quote, can be perceived as a Terrible Disease Which Destroys The Person (the neurotypical person is kidnapped/killed), And Leaves A Husk (the autistic person). If I were missing: Who the hell wrote this Criticism Comment? (Me, and I am on the spectrum) If all autistic people were missing: Who the hell had improved the cattle handling process? (Temple Grandin designed new methods for it AND SHE IS AUTISTIC). If autistic people is missing: Who the hell founded the Autistic Self Advocacy Network? (Ari Neeman is an ASPIE, and Asperger syndrome belongs to the AUTISTIC SPECTRUM). If autistics are missing: Who the hell formulated the general theory of relativity? (Albert Einstein, during his life, shown autistic behaviors). If we were missing: Who the hell owns the Microsoft Computer company? (Bill Gates had been seen to show autistic traits). WE EXIST AS WE ARE, AND PEOPLE LIKE US HAD MADE SIGNIFICANT IMPROVEMENTS TO SOCIETY.

    THIRD: “If three million children in America one morning fell gravely ill – what would we as a country do?”

    Damn it!!! I am NOT gravely ill !!! Such quote suggests they perceive autism the same way they perceive cancer, AIDS, Dengue Fever, Muscular Dystrophy, and other REAL Diseases. In their fucking PSAs, and in their fucking description about autism, they say: “1 in 88 children are diagnosed with autism, making it more common than Pediatric AIDS, cancer, and Diabetes combined”.. This perception is NOT valid and will NEVER be, since these REAL diseases cause death, while autism does NOT cause death, and life expectancies for autistic people are COMPLETELY THE SAME than the ones for neurotypicals. Autistic people have THE SAME body structure than Neurotypicals. Therefore, comparing autism to such things is COMPLETELY THE SAME that comparing Homosexuality, or Black Race, or Blonde hair to such terrible diseases.

    Fourth Hate Speech: “We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.”

    THIS IS THE FUCKING LAST STRAW!!!!!!!!!!!!!!!! This suggests that they perceive us as a menace to the world, like an invasion of fully defective zombie specimens that will destroy all in their way, and kill all people in the world, and destroy all buildings, railroads, and mountains…, and be devastating like a huge strong long earthquake. This suggests, moreover, that they would deploy military troops to kill all autistic person they find, and will patrol everywhere to find an autistic person, and SHOOT THE BAZOOKA. They will patrol all homes, searching for autistic children and adults living on them, and SEND AN ARMED HELLICOPTER TO THROW A BOMB THERE. And if all of us, attempt to flee on escape pods, they will deploy war tanks with huge cannons or war airplanes with missile launching to shoot, and shoot, and shoot, and overthrow us. They of course will remove all children from their parents to make custody of children when born, and in the first autistic sign, SHOOT AND INCINERATE THE CORPSE. They of course, if they discover some parents occulting an autistic child, they will order Justice to charge them for occulting an illegal harmful thing, and will kill the child, and incarcerate or apply death penalty to the parents.

    I WISH ALL MEMBER OF AUTISM SPEAKS TO BE ARRESTED FOR HATE CRIMES, AND PENAL SERVITUDE FOR LIFE IMPOSSED TO THEM. OR IF POSSIBLE, WITH DEATH PENALTY IMPOSSED TO THEM. THEY DONT KNOW HOW WE FEEL WHEN THEY SAY ALL THEY SAY. WE FEEL INSULTED, THREATENED, REJECTED, DEEMED AS WE SHOULD NOT EXIST, AND HOW WE FEEL IS EVEN, ENOUGHT TO CRY.

    I HATE THEM, WITH ALL MY ASS AND MY EXCREMENT, WITH ALL MY PENIS, WITH ALL MY BULLOCKS AND ALL MY URINE AND SPERM.

    More hate speech can be found on the “This is autism” headers, which enforces and reinforces the stereotypes about autistic people, AND WORSE, generalize, suggesting that absolutely all autistic person in the world is like the Extremely Low Functioning Autistics, and WORSE, the following quote:

    “Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.”

    FUCKING GENERALIZATION!!! This only applies to the EXTREMELY low functioning ones, NOT for all of us on the spectrum.

    And more quotes: THE LAST STRAW:

    “This is a national emergency. We need a national autism plan – NOW.”

    “We are heading to Washington with a call for action on a national plan – NOW. We are asking our leaders to respond to autism with the urgency it deserves – NOW.”

    “Washington – here we come – because we need to help our families – NOW.”

    We are a national emergency? Like a tsunami, or an earthquake, or a very strong tornado, hurricane, or storm?. OH, PLEASE!!! They are just Making a storm in a glass of water.

    The urgency they deserves? To kill us? To eliminate us from existence, and some amazing improvement we can make to society (with our savant abilities), would be lost in the time line alteration? Is it urgent to kill somebody, just because that person thinks differently from normal people? OH, MY GOD!!!

    The karma will turn against all the Autism Speaks staff. When they die, they will reincarnate on autistic children, and will feel all we feel now.

    • Jane Duy December 14, 2013 at 9:01 pm #

      First, while you are “HFA” you need to remember there are non verbal autistics who need your support. Autism speaks preys upon the most vulnerable autistics who can’t speak for themselves. That’s why they call them a crisis. They don’t understand their self injurious behaviors. Or their seizures. Yet, instead of advocating that every autistic person, no matter what their level of functioning is, can ADVANCE and is a special person, not a “crisis” they keep up their propaganda. So, if you really want to help autistic people, speak up for those who can’t speak for themselves.

      • Charlotte April 27, 2014 at 4:32 pm #

        Self injury, and that kind of behavior can and does happen to those on higher sides of the spectrum. I like to say I am high functioning autism, but mid functioning aspergers, because even those of us with aspergers have issues with functioning. Might not be that we cannot talk, as I can talk, but I cannot make myself understood. So I still cannot communicate. Life isn’t fine and dandy for us either but we survive and, grow. I couldn’t tie my own shoes until I was 8, I couldn’t swim until I was 12. Even with all my weaknesses I still don’t view myself, and my birth as a crisis. What is a crisis is watching my mother get cancer and watching her deteriorate over 10 months until she dies, that is a disease, not Autism.
        As for the second half, I do speak up for those who cannot, that is my whole reason on wanting to become an advocate. Sometimes I wonder if the ones of us on the spectrum who can talk, if it is at least my job since I am in the middle to stand for those who cannot. I often view myself as a protector of those who cannot fight, or don’t know how to. To me, and I speak for myself here, I feel it is my duty to ensure a safer tomorrow for those with lower functioning autism. So thank you, it is true, though we need awareness for us all on the spectrum, they do need it more, so thank you for supporting that.

  6. Mark R. December 4, 2013 at 6:38 pm #

    Except “autism” is just way too broad, too deep and too complex. Like a rainbow, where does my son’s purple stripe become the blue stripe? And why are his stripes different from those other autistic children his age? The nature of autism itself undermines our conversations about it, such that people so pissed off with the situation start to confuse and frighten others.
    This sucks. It’s not like our children have a “dead-on balls accurate” disease you can zero-in on like leukemia, osteoporosis, or scabies. It’s a spectrum disorder. There are similar symptoms, but no case is identical. I’m surprised that Autism Speaks has the cajones to say it can stand in front of our 6th grade literate politicians alone and appropriately encapsulate and describe “this is autism”. It’s quite possible that the organization Autism Speaks – motivated and financed primarily out of anger and fear – has officially derailed in its charge.

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