All opinions and views stated on this site belong solely to Corina Lynn Becker, and do not represent or reflects the views and opinions of any organizations, unless otherwise specified.

Tuesday, February 8, 2011

Questioning Autism Speaks

I recently had a discussion with the Autism Speaks twitter account, which was an interesting experience. It is very easy, I think, to generalize when talking to an organization's account. I was constantly editing myself from saying "you" to "your org" (org stands for organization), and remind myself that while the person on the other side is speaking on the behalf of the Autism Speaks, that person is not the whole of Autism Speaks.

That aside, the conversation was started when I found Autism Speaks following me on Twitter, and a friend and I were discussing why, even though I strongly dislike the organization, I wasn't outright blocking it. This is because although I oppose a lot of what Autism Speaks says and does, I still maintain that it's possible for the organization to change and become something that I might actually support, and part of that is keeping lines of communication open.

What sparked a rather heated discussion was when the Autism Speaks twitter asked me why I disliked them so much. Some of the reasons included the censorship of an autistic teen's parody website; the many "awareness" videos that have demonized and offended not only Autistics around the world, but over 60 disability organizations; the fact that according to their own IRS 990 forms for 2009, only approximately one cent from every dollar raised when to providing assistance to Autistic families and most of the money goes to CEO salaries, first class expenses, advertising, and research for things that many of us disagree with, such as a "cure" to Autism; and the resounding fact that despite it's slogan of Autism speaking and listening, Autism Speaks ignores a lot of what Autistics say and have made some public relations attempts to appease us, without addressing the fact that there is not one Autistic individual on the Board of Directors or in any major influential position that indicates that Autism Speaks is actually speaking for Autism.

It is the opinion of myself and many others in the Autism and cross-disability community that until these issues are met and dealt with, that Autism Speaks has no right to claim to be the voice of Autism, and that it is a corrupt organization posing as a non-profit.

I went into the conversation thinking that maybe I could at least talk to one person in Autism Speaks about the issues I had with it, and found myself becoming increasingly angry. Despite the links to their own website, the person on the Autism Speaks account denied everything, and said that my facts were wrong. That because the Better Business Beau gave them a high rating, that my facts on where the money goes, and how Autism Speaks treats Autistic individuals, is wrong. They refused to make discuss anything else regarding my disagreements with them, ignoring my questions on how Autism Speaks is changing for the better and just repeatedly stating that I was wrong, wrong, wrong.

Which, if you imagine, doesn't endear them to me any more, and if anything, has only re-enforced to me the issues that I have with them.

What I wonder is this, is it really bad PR for Autism Speaks to admit that they've done wrong? To say "Yes, we did this this and this badly; this is what we plan to change about ourselves"? I understand not wanting to admit that they made a mistake; no one really does. But I think that Autism Speaks will gain far more by being more open about these issues.

By admitting their mistakes, they show humility, compassion, and respect towards the Autistic individuals who they've wronged. It sparks not only healing and commitment to change towards those individuals, but within the organization itself, and prompts it to be responsible.

By committing and then doing those changes, Autism Speaks will actually win over all the Autistic and supporting activists, bringing together the community for the better.

So really, I wonder, how can they afford not to do this? Or are they that paralyzed by fear? Or are they really as corrupt as we think they are?


  1. One thing I do know, the Better Business Bureau gets paid big fees for those ratings and they really don't have much credibility anymore, so using that as an argument is utterly asinine---especially since all they would under any circumstances do is make a note of it IF someone who had given money to Autism Speaks had specifically filed a complaint with them about it. Not a very likely circumstance with a charitable donation, even if someone DID have a complaint they probably wouldn't think of the BBB as a solution!

  2. I suspect any apparent change in Autism Speak's agenda is just a smokescreen for Business as Usual -- Perhaps they just don't think they've done wrong.

    Perhaps to them, we are much loved, but lesser mortals that need above all else to be cured and made just like them.

  3. Viverrine, yeah, I thought so, but wasn't too sure about that, so I countered their use of Better Business Bureau with "yeah, a BUSINESS bureau gives you a good rating for raking in the cash, doesn't relate to where money goes".

    Gimpy, I suspect as much as well. Certainly they haven't done anything to prove otherwise.

  4. I suspect that they don't even THINK they've made any mistakes, and all joking aside, isn't that the first step in solving the problem?? I think they see themselves as in the right, doing good deeds, raising awareness, and all that.

    It is interesting to me, however, that they are following you on Twitter. Only good can come of that, in my opinion. The power of one and all that. If the person reading you has an "aha" moment, that spreads, etc. So I say, keep up the good work!

  5. Autism Speaks followed me on Twitter too and I asked them about the lack of autistic individuals in senior positions in their organisation. Like you, I was fobbed off. I think some of the work they do is very helpful, but why aren't they prepared to listen to concerns? I'm happy for them to follow me if they want. I shall not be following them back.

  6. Hi Corina. I’m the individual at Autism Speaks that you spoke with on twitter last week, and I wanted to clarify a couple of issues. The reason we engaged with you on Twitter was because you called us ‘evil’. It’s one thing to disagree with our mission, it’s quite another to use terminology like that.

    I continue to stand by my correction of you regarding the money we raise. Statements like "…most of the money goes to CEO salaries, first class expenses, advertising." are flat out incorrect. I don’t know how much clearer I can be: that is simply not true. As far as the money we spend: any fundraising activity that any non profit puts on will incur expenses. Those activities raise lots of money though: that’s the reason that we put them on, so spending a little to raise a lot makes sense to us.

    As far as our broader mission goes: we are predominantly a research organization, and as such we fund a variety of research projects. THAT is where the majority of the money we raise goes. We're a 501c3, so our numbers are a matter of public record: I would be happy to walk you through them personally if it would help. We have absolutely nothing to hide. If you’re in New York any time soon and were interested in meeting up I’d be happy to walk you through them in person, or if you’d prefer I could do so over the phone. That’s an open invitation.

    You are of course absolutely entitled to have any opinion of us you like, but I would hope that you form opinion that based on facts. Are we perfect as an organization? No, of course not, no organization is. Are we among the most efficient non profits financially (meaning % of money raised that gets spent on our mission), and do we have the best interests of the community at heart? Yes. Is our goal to improve life for all who struggle with autism spectrum disorders? Yes, it absolutely is.

    Autism Speaks has made incredible strides over the last couple of years: from the community grants we award, to our AFAA work, to the 100 Day Kit and Transition Kit, our research work, our advocacy work and beyond. There’s a long way to go, but the great support we get from the community shows us we’re moving in the right direction.

    We do value all feedback and input, and would love for you to be a part of that moving forward: the door is always open.

    1. I just gave funding to the autism speaks fundraiser for 2012 and please know that though some may feel your reponse may seem not worth mentioning on a large forum, it came up on my google search. A friend asked me to donate. This made all the difference. I hope it does to others as well.

    2. Wait, so despite knowing that Autistics oppose Autism Speaks for all the reasons above, you STILL donate to it?

      Yeah, that really shows your reading comprehension right there.

  7. Do be honest; I didn't actually say you were evil. My friend asked for confirmation that your organization is evil. As a close friend, I know that she meant "not really in support of autistic individuals". If the issue was really about the use of the word "evil", you should have talked to her about it.

    However, you addressed both of us on what we didn't like about the organization to make us feel the way we do.

    And once again, I'll direct you to the IRS 990 form, available on the website, where it clearly shows a huge difference in the amount of money that is spent on paying people, costs such as first class air fare and luxury apartments. It's right there, on the forms.

    Read the post, I put a link. It's tax season again, so the 2010 forms aren't out, and granted, as a Canadian, I don't know how often those forms have to be done. However, in 2009, the average is, based on your IRS forms, that 1 CENT out of every dollar goes to families; the rest to other costs.

    Not a really effective non-profit there.

    So once again, how can you move forward, when you aren't even facing the facts?

    Once again, you're denying that these facts exist, and dismissing me. And so, we're back to this post.

    This has been going on for as long as I've been an online autistic, since 2005, at the least, the Autistic community has been calling on Autism Speaks to change.

    And this is the response I get.

    Thank you, unnamed Autism Speaks spokesperson, for proving my point exactly.

  8. Also, the invite to call or visit New York? That's kind of cute. You realize that I'm Autistic, right? And that, just because I can type doesn't necessarily mean that I am functionally verbal, or in any sort of functional, social or financial situation to speak face to face?

    Given the fact that you're representing an Autism organization, that's kind of a rude assumption to make... as it happens, my best communication skills are typing, so if you don't mind, I'd prefer to keep this online. Granted, I do like the switch to my blog; it's a lot easier to compose sentences here than on twitter.

    And please, don't bother to ask to move it to email; I'd just post it up here, because I believe these kind of conversations should be public.

    So if you please, read the actual IRS 990 form.

    Although, here's the numbers, if you just want the facts.

    total revenue $45,524,396
    total payroll $16,565,634

    with 28 employees receiving more than $100,000
    Mark Roithmayr $372,090
    Peter Bell $256,240
    Geri Dawson $439, 848
    Leslie Chambers $205, 291
    Glenn R. Tringal $112, 000

    Advertising $2,028,078
    Office Expenses $2,674,134
    Research Grants $11,665,337

    Family Services $814,016

    And once again, these numbers are straight off the IRS 990 form. So the only way these numbers aren't true, is if Autism Speaks didn't fill out the forms correctly.

  9. The point of me leaving a comment here was not to get into an argument with you, it was to try to enter into a dialog and to address your criticism of us.

    The IRS form tells part of the story, but only part of it. It doesn't, for example, indicate the over $150 million of donated media we've secured, or the countless hours volunteers spend working for us, or many, many other relevant bits of data. Nor does it tell the full story as regards areas like lobbying for insurance reform, or the other areas where we do work that positively impacts families.

    Ultimately there's a choice here: we can decide that we'll never see eye to eye, or we can try to see things from the other's point of view, and work out how best to move forward. Our preference would be the latter, which is exactly why we reached out to you.

    Kai - Autism Speaks

  10. *noms on popcorn*

    Ooooo dis gunna be guuuud

    So question AutSpk butt-monkey, what is the point of all this derailing? I mean to be honestly it's because of that IRS form and the fact that people has called you on how unbalanced it is, is why AutSpks has stopped putting their fiscal budgets online


    and again if I am wrong, please produce the fiscal budget of 2010 and prove to me and to Miss Becker that your are giving back into the communities and providing funds necessary to parents of autistic children. Where are you funded programs to support vocational training for autistic adults, as well better education and health care for them? How come your advertising message continues to paint being autistic as the same has having terminal illness? I mean your org even took down the "I Am Autism" video down because of it's inflammatory message the enraged response of both autistic people and parents of autists. Also why is the UK branch AutSpk renamed itself as "Autistica?" And continues to disassociate themselves with the US one.

    You're the equivalent of a charity saying that they are the voice of Queer community but they spend their money on research to cure homosexuality and have ads turning queer folks into tragic idioms, shallow golems to produce pity from uneducated audiences. As well as have all straight and cisgendered Directors saying that they speak for the Queer community.

    AutSpks not evil, but the org is rather duplicitous.

    And if we are wrong. Don't just tell us. Prove it. Give me evidence.

    Bard out

  11. funny corina i think you and i have spoken via twitter in the past that you think the vaccine-autism link is incorrect, yet your calling out of as in these paragraphs struck me:

    "What I wonder is this, is it really bad PR for Autism Speaks to admit that they've done wrong? To say "Yes, we did this this and this badly; this is what we plan to change about ourselves"? I understand not wanting to admit that they made a mistake; no one really does. But I think that Autism Speaks will gain far more by being more open about these issues.

    By admitting their mistakes, they show humility, compassion, and respect towards the Autistic individuals who they've wronged. It sparks not only healing and commitment to change towards those individuals, but within the organization itself, and prompts it to be responsible.

    By committing and then doing those changes, Autism Speaks will actually win over all the Autistic and supporting activists, bringing together the community for the better."

    change AS to big pharma and see what could happen?
    wishful thinking....

  12. but i do agree w you corina that AS is corrupt in many ways and needs to do more for families and less for salaries and the fiscal proof is out there for all to see (and we have seen it).

  13. @Autism Speaks, I really believe you should change your name. There are many in the autism community that despise your videos and are offended by your research to find a cure. What does AS do to improve education? How is the money used to protect our children from restraint and seclusion? What is AS doing to encourage parents to vaccinate their children? Do you know how many people had to walk to pay those inflated salaries? You are taking so much money from the general public and I haven't seen anything to show for it except for some really offensive videos.

  14. The person you were tweating with has to follow the rules within the organization. Chances are he/she/they lacked the authority to address your issues, but started it to see if it was something they could address or to gather information.

    Admitting they are wrong and committing to change would be a decision made at the top of the organization, either by the board of directors or by the organization's executives. And they have a vested interest in not doing so.

    They are not likely to change until the social pressures to change are greater than the social pressures not to change. While self-advocates and parents like myself are growing in number, there are still plenty of people and organizations with deep pockets willing to support Autism Speaks as it is.

  15. Corina,

    you are great at asking people/groups good questions. Are you considering applying for one of the ASF stakeholder grants?

  16. @NightStorm, not too sure about the "butt-monkey" part, but otherwise, right on. You make some very good points.

    @ Stephanie, all things considering, I do believe you are right. This person seems to be in no position to make changes, and is unwilling, if maybe unable, to take our concerns to the higher-ups. And certainly it looks like they do have a good vested interest in keeping things running as they have. Which makes change from the inside quite a taunting task, and highly unlikely to occur. Doesn't mean that it couldn't happen, but not very likely.

    @Sullivan, thank you. I've looked into it, but right now they can only give those to American citizens, people with green cards, or students at US-based universities, and unfortunately, I'm none of those. If they are able to give them to Canadian citizens, I would definitely apply, and see about bringing along my soon-to-be sister-in-law, who is a medical student, to explain the science for me.

  17. Even an organization like Autism Speaks can have a change of "heart." It usually takes more social shifts than would be required for most people, but it can and does happen.

    I applaud you for keeping the dialogue open.

  18. To hope for a change of heart from people who have gotten such a taste for the good life by having high salaries is kind of like expecting sharks to swim off into another direction after smelling blood.

  19. I just tweeted a couple of derogatory statements, placed "#autismspeaks" on the tweet and they're following me too!

    Doesn't it make you feel special??

  20. @userthebrainsgodgiveyou, oh yes, it's amazing how that works.

    I do feel kinda special; of all the people that are pissed with them, they had to reply to the Canadian English major taking Disability Studies in activism, and try to invite her to a face to face confrontation, knowing full well that she's Autistic.

    The total failure to apply Autistic disabilities to an actual Autistic person is a sweet kind of ironic. Really, it just says so much about the organization right there.

    But the fact that they tried that PR stuff on me? That's funny.

    1. Dude, I do not even KNOW what I just witnessed. Seriously? How effing ablist can you get? Also serious undertones of "why don't you come here and say that to my face." HUH? Other than being United Way-esque in their obvious inefficient use of money on anything other than office expenses, advertisement and fundraising, they are obviously so completely and utterly out-of-touch with the people they claim to represent it's both maddening and amusing. I suppose those are my choices: laugh or cry. Effing "awareness" campaigns, dude. I'm telling you.

    2. Yeah, really.

      "Come here and say that to my face"... I really should read it like that, shouldn't I? I want to reply now, "I am; it's called the Internet and what I'm saying is right in front of you. Deal with it."

      Both laughing and crying just fuels my rage; the difference is that laughing doesn't stuff up my sinus' and give me a headache like crying does.


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