The Latest From Autism Speaks

This is the email I received this morning.  It’s from Autism Speaks.   Please read and let’s discuss…


Dear Ariane ,

We had a significant presence at the first Presidential Debate at Denver University last week. We are going to have an even bigger presence at the next two debates to show the candidates how big the autism community is!

We need your help to make the autism community, and all of our issues, a squeaky wheel in this election season. For the next debate, we don’t want just a mention of autism.

We want the candidates to discuss a plan for leadership on increased funding for dedicated autism research and appropriate health insurance coverage for all Americans with autism.”

In the first statement Autism Speaks writes, “… we want our 1 in 88 in the debates.”  When they say “we” am I one of the “we”?  “We are going to have an even bigger presence at the next two debates…”  We are?

“Our” is a curious word to use when speaking of a group of people, many of whom can speak for themselves and those who cannot “speak” are capable of communicating, through typing or other means of communication, their thoughts and ideas.  “Our” is a pronoun implying ownership or at the very least lends a sense of unity and inclusiveness as in “our politicians,” “our neighbors,” “our friends”.   What Autism Speaks is really saying  is “our Autistics.”  I don’t think the people I know, whether Autistic or not, would take kindly to that wording, but “our 1 in 88” somehow gets a pass?

“We want our 1 in 88 in the debates!”  Really?  Is Autism Speaks suggesting Autistic people should be up on a stage or at a town hall debating the presidential candidates?  It’s an interesting and compelling idea and one I whole-heartedly embrace, except I don’t believe this is what they mean.  “Behind every person with Autism is an army of support.”  I don’t think most of the people I know who are Autistic feel they have an “army of support.”  In fact most of the people I know who are Autistic feel they have very little, if any support.  But I’d really like those who are Autistic to weigh in here and say for themselves whether they feel they have an “army of support.”  Armies are usually employed to fight or fend off an enemy.  Who is the enemy and who makes up this army?  Am I part of the ‘army’ that is supposedly supporting my daughter?   Maybe me and Richard?  An army of two?  Where is the army of support that’s standing behind each and every “person with autism”?

Autism Speaks is much, much more than an organization attempting to raise awareness or one that insists they speak for Autistic people while doing nothing of the kind.  They are running a campaign, not a campaign that raises money to help those with Autism, but a campaign that promotes fear and generates terror.  Anyone who  has spent any time in the advertising business knows, fear causes people to open their check books faster than any other single emotion.  Autism Speaks does a brilliant job using language to convey other, more subtle meanings.

Autism Speaks is interested in having autism addressed by politicians, a worthy and important suggestion that ALL of us can agree on.  Except Autism Speaks is NOT a leader in showing the world how to INCLUDE Autistic people in the building and formation of their various programs.  Autism Speaks uses the words, “Autism Speaks it’s time to listen.”  But who is it they are suggesting we listen to?  Not Autistics.  They have positioned themselves as an organization which represents Autism.  They have self-appointed themselves as the “voice” of autistic people despite the vehement protests by so many who are Autistic.

Can you imagine an organization that suggested they spoke for the American people and yet were made up of people of some other nationality.  An organization which only had one or perhaps two Americans on their board, advisory committee or occupying more than one or two seats of the upper echelons of their organization?  Imagine for a moment how you would feel if an organization called themselves: “Americans Speak it’s time to listen”, yet those who were talking weren’t American and when you tried to say something you were routinely ignored.  Imagine how you would feel if this organization continued to insist they spoke for you and yet when you heard them speak you didn’t recognize yourself or any of those you knew.  Just imagine.

To Mitt Romney and Barack Obama:  please inform yourselves about autism by listening to those who are AUTISTIC.  That’s the discussion I’m interested in listening to, the one that includes autistic people and not those organizations that say they do and yet do not.

37 responses to “The Latest From Autism Speaks

  1. America Speaks. It’s Time To Listen. Now imagine if this group, associated with very few Americans, using another language, raised a great deal of money after positioning itself as the premier voice of America. Once the leaders, none of whom were American, lined their pockets at a rate higher than that of many non-profit leaders, they invested in research to make sure no more Americans would be born, and for those unfortunate tragedies already alive, they funded a little research into looking for some drug that would remove Americanness, despite the fact that most of science by now agrees this cannot be done. Great analogy, Ariane!

    If they really are all about getting insurance now, why are they afriad to invite Americans to positions of organizational influence and power?

    • Aww.. Ib, you took my analogy and raised me one (to use poker terminology) Love that.
      And by the way, I had no idea you have an “army of support” behind you. They’re wearing really good camouflage I guess because I can’t SEE them! Or maybe they’re hiding. I think they’re very good at hiding.

      • Yeah, the primary purpose of my AS “Army of Support,” if you look at the preponderance of where its money goes to other than to the greater glory of itself and wealth of its leaders, is to prevent my birth or eradicate my essence with “friendly fire.” I hope they keep hiding deep deep deep in the trenches in my life so they can’t get me!!

  2. I don’t know what more I could say about Autism Speaks that I have not. They exploit autism to line their wallets and somehow have a lot of very visible groups convinced they do good. I get sick just thinking about them.

    • I almost didn’t write this, because I thought the same. But then I remembered what someone once said to me, “the only way change occurs is through repetition.” And I’m pretty sure they weren’t referring to ABA, so I thought, what the hell. I’m going to talk about this again.

  3. And one wonders where the money goes–

  4. They are doing a big blitz to try to get autism into the debates. Autism is important to all of us, but I don’t know that NAA, Safe Minds, Autism Speaks, etc., need to put THAT much emphasis on it in the presidential debates. They’ve got a constant contact petition out urging people to write to the candidates, call them, etc., to make autism a big issue in the next debate.

  5. I am frustrated at the lack of mention that autism gets in the Presidential debates. I do, however, think it would be much more effective to wage a letter writing campaign to our local politicians – congressmen and senators.

    On another note, Ariane, I wanted to tell you something incredible. Marisa played with Legos last nite. I mean, she *actually* played with them. She actually played with me and Jesse, and let us show her how to do it. She was engaged with us like I’ve never seen before. We all three played for well over an hour. Isn’t that amazing??

    It was weird. For the last few weeks, she’s been having this obsession with putting away the Legos. (Gosh, wish that would rub off on her brother, lol!) But last nite I heard her in there – she had put all of them in the box, but had gotten out some flat pieces and was trying to put the legos on there. Now, usually at this point – if one of us sits down next to her to try and show her, she’ll stand up and run off. This time she didn’t. I snuck downstairs and summoned Jesse upstairs quietly, telling him to not make a big deal of it, lest me scare her off. And we all three played for over an hour! It was amazing! Unfortunately, this is the one nite Joel wasn’t home. I took pictures, though!

    Does Emma have a karoke machine? I was just recalling what you said about using her desire to “sing on stage” with helping her learn to read. I’m sure she already has one, it was just a thought.

    • Angie! This is such fabulous news!! Oh my gosh, I love hearing this, just love it.
      Yes, we did get Em a kareoke machine, but she can’t quite read music yet, so we ended up justing using a microphone!

  6. I definitely can’t say that I have an “army” of supporters, that’s for sure. Unless an army is one person.

  7. Angie this is excellent! 🙂 🙂 🙂 🙂 🙂 🙂 Legos are awesome.

  8. You can see where the money goes easily enough. They are required to report it. Granted the easiest to find stuff comes in the form of confusing pie charts but even that is alarming enough.

    Hooray for Lego

    I think making autism a presidential debate issue would just spread misinformation and make it more exploited than it already is. It’s clear enough which x on the ballot will help those with disabilities the most. Let’s not make it a talking point when we know much of what is said will either be untruthful or simply won’t happen.

    • Agree that making autism an election debate issue will create (negative) unintended consequences. Remember when war was declared on Cancer and on drugs? Can you imagine a president who declares war on autism? Autism Speaks will love that.

      • Ack, we have enough troubles with the loudest charity declaring war on us by saying that our “tragic disease” “speaks” but we should shut up, and it’s time to listen to… their advertising. I would not love to have the President of the USA doing the same or similar. Because really, who would they encourage the government to turn to for guidance? ASAN, or AS? Well, who can finance things more effectively? You got it.

    • Yes, you’re probably right. It’s why I said, ” please inform yourselves about autism by listening to those who are AUTISTIC.” I’m going to keep dreaming, Gareeth!

    • Am I being completely pollyannish in holding out hope that a presidential candidate would LISTEN to Autistics to learn about autism and not listen to these organizations?

      Yeah, I guess I am.

  9. a book called “Zoom”
    i teach perK 3/4 drama I’m the aid
    today one things we talk about was how I’m handicapped and we read a children’s book about a child getting a power wheelchair and the kids got touch my wheel on my walker
    then we did Halloween stuff

  10. I really, really, REALLY do NOT want autism entered into the presidential debate. I don’t want a topic so important to become political fodder. Good grief no. I can’t see the good that would come out of that. I just can’t see it at all.

    • I hear you. How effing sad is that? Seriously. We actually are hoping it DOESN’T come up because the degree and breadth of misinformation is so dreadful and across the board it could actually make things worse? Yuk.

  11. Generation Rescue managed to one-up them with a plea to address the need for opportunities for “our adults with autism.” “Our,” really?

    • That phrasing makes me absolutely bat-shit crazy. It’s infuriating and condescending and implies ownership in the most heinous and disingenuous way. Oh ick. Just ick. (autocorrect keeps trying to make that ice.)

  12. Yep. I don’t even imply ownership of my dog but that mentality is pervasive. Opportunities and supports for adults are badly needed but it won’t be coming from groups that think we need rescuing.

  13. Reblogged this on Athena, Ivan, and The Integral and commented:
    A very important read!

  14. A very well written and important article. Reblogged and thanks for sharing.

  15. Pingback: The Latest From Autism Speaks | Emma's Hope Book | My Autism Site | All About Autism

  16. Yeah, I have an army of support. An army of Me, Myself, and I.

    I have friends, but they’re not really an army of support-most my friends are in the same boat I’m in. And our little armies of one are having to take on a giant army that claims to be speaking for us when actively speaking against us…in addition to trying to get done what needs doing.

    I have an army of way more than me myself and I intentionally hindering everything, if that’s what they mean then they’re right on.

  17. autism speaks does not speak for me! as far as i’m concerned they can shut the hell up.

  18. Thanks for sharing this post with me. I do see where your opinion of them stems from, but I can’t take them for a total loss yet. Yes they might exploit autism for their own gains, but what about the real life stories they share and messages of hope. Yes there might be a hidden agenda behind these positive promotions, but even so they help me. I love reading a heart warming story they have posted on their facebook wall, or a quote that informs me. Reading these doesn’t make me a supporter though.

    I will whole heartedly agree, that there is not “a whole army of support” behind every person living with autism. If there was we would be a lot further ahead than we are.

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