RSS

Old Autism Speaks Masterpost

(TW: Ableism) Autism Speaks is the most well-known autism charity.  They have the most media coverage and are endorsed by many celebrities, but this certainly does not make them a good organization.

  • Autism Speaks does not have a single autistic member on their board.

  • Autism Speaks only spends 3% of their budget on “family services”.

  • Much of Autism Speaks’ money goes toward research, and much of that research centers on finding a way to eliminate autism, and thus, autistics (which will likely be done through a prenatal test, in the same way that the Down’s Syndrome test is conducted).

  • Autism Speaks produces advertisements, small films, etc. about what a burden autistic people are to society.

  • Autism Speaks was responsible for “Autism Every Day”, which featured a member of their board talking about contemplating murder-suicide of her daughter in front of her daughter.  This has now be removed from Autism Speaks’ Youtube channel.

  • Autism Speaks is responsible for the atrocity known as “I am Autism”, a short film produced by the Academy Award Winning Alfonso Cuaron, who also directed the 3rd Harry Potter movie (yes, really) and features an ominous voice saying things like “I am autism…I know where you live…I work faster than pediatric AIDS, cancer, and diabetes combined…I will make sure your marriage fails.”

 

In short, Autism Speaks is part of the problem; they create a stigma that makes it far more difficult for actual autistic people like myself to be heard, to have our opinions matter, and to fall anywhere outside of the “autistic angel” and “screaming, violent, rocking in the corner autistic” stereotypes. In addition, for them, as well as many other organizations (and the media), autism is considered to be a child’s disorder/disability, and you will often hear people say “where are all the adult autistics?” I can’t tell you how many times I’ve heard that in the past 5 years or so. The answer to that is simple!  We’re right here in front of you.  We may have been misdiagnosed as children with learning disabilities, intellectual disabilities and the like when the diagnoses of autism, PDD-NOS and Asperger’s weren’t as precise (or even existent) as they are now.  We may not have been diagnosed at all and simply treated as though our difficulties are our own doing. We vary in where we fall on the spectrum, though functioning labels are gross and you shouldn’t use them.

 

For further reading, here are a few resources about Autism Speaks:

Say No to Autism Speaks

I’m Autistic, But Autism Speaks Doesn’t Speak for Me.

An Autistic Speaks about Autism Speaks.

A Chart Regarding Autism Speaks’ Allocation of Funds

ASAN’s flyer regarding Autism Speaks (this is easily printable and is good for distributing information quickly).

Joint Letter to the Sponsors of Autism Speaks

Here are a few other terrible things that Autism Speaks has done recently.

  • This woman’s job offer was rescinded after she asked Autism Speaks for accommodations in caring for her autistic son.  They refused, and she made necessary accommodations for childcare, but they withdrew her offer anyways.

  • Autism Speaks shared the news of Google removing hate speech regarding autistics from Google’s autofill feature, completely erasing any mention of autistic people’s flashblogs having anything to do with the change.  It was only after a member of the autism community (and not a parent, but an autistic person themselves) spoke with a reporter about the flashblog and a statement was released to the media that Google decided to make this change.

  • Autism Speaks highlighted AAC use, while erasing those those who actually use AAC devices to communicate.  The focus was on the caretakers, not on the autistic people themselves. (The attached link has a link to a rebuttal by a nonspeaking autistic person, Amy Sequenzia).

  • Autism Speaks has violated copyright and has profited off an autistic advocate’s writing for three years.

 

There are a number of corporate partners — big businesses (for the most part) who align themselves with Autism Speaks. This can take many different forms, but in general, you should consider that a purchase to any of these companies may benefit Autism Speaks. The list is as follows (thank you, austryzor):

 

Several people have contacted me with requests for what organizations actually do help autistic people.  There are a few, in fact, that actually focus on autistic people, and not just autistic children. The final two are actually general disability organizations, and not specific to autism.

 

The Autistic Self Advocacy Network is pretty much the best choice.

The Autism National Committee

Autism Network International

Autism Women’s Network

TASH

ADAPT

 

I know that a few of you have asked, “what now? What do I do now?”  The first thing you can do is educate people.  Share this link with them.  Sign petitions, like the few listed below.  Educate people about autism and autistic people.  You’ll find links on my page to do just that.  Feel free to tweet the companies listed above and explain to them why you don’t support Autism Speaks and you don’t think they should, either. And finally, get involved on the local level, if you can. Find out if there’s a local organization that provides support for autistic people, and if not? If you know an autistic person, listen to what they have to say. Offer help if they want it, and if they don’t, back off.

 

Autism Speaks related petitions:

 

Terminate Affiliation with Autism Speaks at UMD

Revoke Autism Speaks’ status as a charitable organization

Lindt

Corporate Sponsors of Autism Speaks

 

Edited 3/6/13 to add — someone on my WordPress blog posted a link to this GIGANTIC resource, bigger than mine here (obviously).

Autism Speaks Controversy Links

 

Edited 3/24/14 to remove Panera Bread as a corporate sponsor.  They have rescinded their support of Autism Speaks.

 

58 responses to “Old Autism Speaks Masterpost

  1. Amy Carlson

    March 18, 2013 at 10:07 pm

    I’m going to share this, thank you for your informative post.

     
    • The Caffeinated Aspie

      March 18, 2013 at 10:36 pm

      Thank you! I’m glad it was informative and I hope people do share it!

       
  2. cynkingfeeling

    April 2, 2013 at 1:31 am

    This is a great one-stop place that will be easy to refer others to. Thanks for putting this together.

     
  3. Catherine Fowler

    April 7, 2013 at 11:24 pm

    Thank you for this. I re-posted it on my blog.

     
  4. Lisa

    April 10, 2013 at 3:17 pm

    Thank you! Autism Speaks truly is awful and so are the people out promoting it. One of the worst, Matt Wilson of Newton MA. whose career seems to be running and raising money for them. Another lame AS proponent, Judtih Ursitti of Dover MA who works for them and speaks of them as if they are utopia. Seems these a lot of the AS blowhards live in the freaky liberal state of MA.

     
    • thecaffeinatedautistic

      April 10, 2013 at 6:25 pm

      I agree with you, though I find liberal and conservative folks to be about the same with regards to Autism Speaks. Also, I would like it if you wouldn’t use the word “lame” in a derogatory manner, as the physical nature of being lame isn’t something inherently negative. Thanks!

       
      • Stemcell Abortion

        April 29, 2013 at 12:43 am

        I find it more offensive that you’re asking someone to not use a word because you don’t like it, than I do thus entire subject matter.
        You’re lame for asking, even in asking such a polite manner. Grow up and accept words in the English language that we’ve all agreed upon.

         
      • thecaffeinatedautistic

        April 29, 2013 at 1:33 am

        Oh, hilarious. It couldn’t possibly be because the word is, in fact ableist and using “lame” to mean “bad” is no less offensive than using any other ableist slur or, perhaps, using the word “gay” to mean bad. But heaven forbid I actually call that out, because of COURSE we as a society have alllllll agreed that it’s totally okay to use ableist language. Except it’s not. And even if “society” had determined it to be a-ok, it still wouldn’t be, because hello, marginalized people are the minority and surprise! Apparently few people care what disabled people think.

        It isn’t because I “don’t like it”. It is because the word is equating disability with something negative, and no, that isn’t okay.

        Also, you will notice that I didn’t say “don’t use this word ever”, though I would hope none of my readers would ever use ableist terms. I do, however, have the ability to police the terminology used in the comment section of my own blog. I am no more okay with someone using ableist terminology in the comments than I would be with someone using homophobic or racist slurs.

        If you don’t like it, leave.

        Though I’m calling troll, based on your user name.

         
  5. rylin55

    July 15, 2013 at 8:15 pm

    Thanks for this – i appreciated this point of view very much! Autism Speaks just either scares me or makes me want to scream, depending on the circumstances (i just read that in March Simone Greggs lost her suit against AS -gee I wonder if that had to do with their Big Money origins?!!) I wanted to ask, though, why you didn’t include GRASP in the list of groups that support Autistic adults?

     
    • thecaffeinatedautistic

      July 17, 2013 at 11:07 pm

      Simply because it’s a group I’m not familiar enough with to throw my support behind.

       
  6. Cindy Fisher

    July 23, 2013 at 7:30 pm

    I appreciate your point of view. It puzzles me to know what to say when I refer to individuals when some want to be described in person first language and others identify more closely with their personhood and want to “own it” (meant as a positive comment). I hope that all of us can be patient with each other in our use of language and realize that everyone is doing the best they can to make the world a better place, even if we don’t approve of the path that others are taking. I think everyone in this field means well. Nevertheless, I am going to post info about this issue on my website to help bring about awareness.

     
    • thecaffeinatedautistic

      September 3, 2013 at 4:35 pm

      I agree! As long as people respect how I refer to myself, I think that’s fine. I won’t ever fault someone for wanting to be called something else.

       
  7. Steve R

    October 31, 2013 at 11:31 pm

    I stumbled upon your sight and must say you’ve startled me with your comments. This Saturday I’ve volunteered to walk in DC for Autism Speaks (as well as made a donation) and now I’m feeling seriously conflicted. I will go because I made a commitment, but your comments will necessitate further investigation on my part. I’ll also pass your comments on to my colleagues (I’m a special education teacher) and thank you for the wake-up call. It’s mind-blowing how powerful this agency is and yet you claim it is an awful organization. I’m not generally a naïve person, but this really has me feeling like I’ve been duped. Sigh.

     
    • thecaffeinatedautistic

      November 2, 2013 at 2:53 am

      If you read the links in the actual post, you will realize that I am not the only one who is standing up and saying that Autism Speaks is quite frankly, a horrible organization. It makes me physically ill and I have an actual physical response of fear and dread when I see their logo, hear a commercial from them or about one of their walks.

      It bothers me, quite honestly, that you are more devoted to what you see as breaking a commitment than to investigating Autism Speaks as an organization and making a decision based on that information. You must realize that Autism Speaks is a big organization. They won’t miss one person, of course not. But your actions speak pretty clearly to me that you probably aren’t, at this time and place, an ally to autistic people. That doesn’t mean that you can’t become one, or you won’t become one. But placing your commitment to walk with Autism Speaks over the words of actual autistic people says very clearly that right now, you’re not really an ally.

      You have been duped, you’re right. Autism Speaks says one thing and does another. They also use coded messages about “helping” families, but don’t do any of that (not to the extent they say they do). Even when they are “helping”, they are contributing to autistic people being put through ABA, which can be a very abusive form of therapy, where the goal is to make said autistic person less autistic.

      I guess the moral of the story here is to investigate charities before you give to them. That’s kind of what I consider to be a no-brainer, knowing how many charities out there are either scams or just aren’t doing exactly what they say they’re doing or are speaking OVER the people they’re supposed to be speaking for.

       
      • MartialAutist

        May 4, 2014 at 2:02 pm

        Telling someone about whom you know absolutely nothing, who may well be engaged in work and activity with autistic people on a daily basis, that she’s probably “not an ally to autistic people” based purely on her willing to stick to a commitment is, in my opinion, deeply arrogant. Speaking as an adult with AS, I would have serious problems breaking a commitment I’d made in good faith.
        Researching charities before you support them is good sense, but telling a stranger what side she’s on seems unnecessarily high-handed.

         
      • thecaffeinatedautistic

        May 4, 2014 at 2:29 pm

        If I discovered that a charity that I agreed to work with contributed to ableism and abuse of the very people it claimed to help, I absolutely would not honor my commitment to such an organization. And I question the morality of anyone who would honor that commitment.

        And I honestly don’t care about whether or not she works with autistic people. Some of the worst people, the most ableist towards autistic people, are those who work with autistic people. That tells me nothing about her motivation.

         
      • millie

        June 18, 2014 at 1:14 pm

        I’m with MartialAutist. You had credibility with me until you attacked Steve R for his comments. You have autism, but you must understand that you have NO IDEA what it is to care for someone with autism (parent or teacher.) You are very condescending in your tone toward others. Dealing with an autistic child day in and day out can be very challenging. Yes, it crumbles many marriages. Yes, it drives caregivers to the brink. For Autism Speaks to ignore the care giver and his/her needs (though often not politically correct in your eyes) would be a disservice to the other half of those who live with autism in the home. Your arrogance and condescending tone makes me doubt your objectivity now. Good luck to you.

         
      • thecaffeinatedautistic

        June 18, 2014 at 6:25 pm

        I’m sorry, but you must have totally missed the part where I’m a parent to two autistic children. I at one time was a teacher to several autistic children, as well as kids with other disabilities. I believe that genuine research into actually helping autistic people would be fantastic. Autism Speaks does none of that and silences autistic voices. Where did I ever say that parenting was not a challenge? But it’s a challenge for parents who have neurotypical kids too, but we don’t see videos being made about murdering neurotypical kids and having that waved off as the “merciful” option or saying it’s understandable. Sorry, but if you think Autism Speaks is doing anything but speaking over autistic people and working toward a world where we don’t exist (because yes, there is a part of their website where the words “a world where autism was a thing of the past” are there, plain for anyone to read).

        If you think I’m arrogant because I demand that autistic people’s actual needs are addressed and that our nt parents aren’t leading the conversation with cries of how horrible their lives are because they chose to have us and now they’re “suffering the consequences”, most of the time with little actual concern with how autism affects us, the actual autistic people, well, I’m sorry but I don’t know how to respond to you there. I don’t see that as arrogant and I don’t see how my tone is condescending. I find it ironic, though, that you’re not combating my facts here, but my tone. In an online discussion. With an autistic person whose words are being given a tone that doesn’t exist. My words are straightforward and if you’re reading something other than logic and facts into it, well, that’s on you.

         
  8. Garrett Winters

    November 5, 2013 at 5:29 am

    For organizations that support Autism, you could add Anova Center for Education…it’s a school organization that helped me for 6 years and is devoted to helping people on the spectrum…I’m an Aspie

     
    • Gregory J. Toma

      June 20, 2014 at 6:04 am

      You call an organization evil because they do not cater to your concerns about autism. Despite the fact they are one of the leading charities to contribute to autism research. They don’t pretend to be an Autism welfare clinic. They’re focus is not on making the lives of living autistics easier, it’s on finding a way to eliminate it, or at least lessen it’s hold on individuals who have it. It is your apparent opinion that this is somehow a bad thing, that shocks me.

      You act as if being autistic is like being Italian, or African American. And that by working to find a way to eradicate the condition, they are essentially committing genocide. Nobody is advocating to murder autistic people. I would seriously doubt than anybody with the condition, would ever wish it upon anybody else, especially their own children. I have tourettes syndrome, and I would love for them to find a way to eradicate it, or lessen it’s severity. And rather than complain about an organization that focused on getting rid of it even if it neglected making my life easier, I would praise it. At the very least, I would be thankful for any organization that contributed towards any kind of research for it. You should be so lucky to have so many charities willing to help the condition. Because believe me, conditions as rare and unknown as tourettes don’t have that kind of luxury.

       
      • thecaffeinatedautistic

        June 20, 2014 at 6:44 am

        You cannot compare Tourette’s to autism, because they are two entirely different conditions. I cannot pretend to know what it’s like to have Tourette’s, though I do have one friend who does have this disorder and he seems to have a happy enough life, one that’s acceptable to him. But that’s just one person, and I cannot speak for your community, and you cannot speak for mine.

        Are you aware that you are speaking to someone who is autistic but who is also the parent of not one but two autistic children? Because your comment about nobody wanting their children to be autistic is really cruel and heartless if you have indeed read the rest of my blog and still make this sort of comment.

        Autism is the way that our brains work, the way that we communicate, and nothing about it is wrong. It is not a disease, something heartbreaking and life threatening, and no, I do not appreciate organizations that are dedicated to finding a cure for something that is a variant of the acceptable neurology. Because that is what autism is – a variant. It is not wrong, or dangerous, or something to be feared. It is a difference in human neurology. I am French and Native American, and I would no more want to eradicate those parts of my genetic codes than eradicate the autistic part.

        Autism Speaks doesn’t listen to autistic people. That is a HUGE problem, and if you think that parents and “professionals”, some of whom are only “professionals” because they’re actors and have autistic children can speak more about what autistic people want than ACTUAL autistic people, you are very very ignorant.

         
      • Garrett Winters

        June 20, 2014 at 5:00 pm

        Thanks for responding to me
        …why?

         
  9. Sherri

    November 13, 2013 at 12:58 am

    Always check with you local Autism Society chapter. The money raised locally is used for local families. There is no age limit and it does take board members on the spectrum.

     
  10. theautisticchildhasspoken

    January 28, 2014 at 7:02 pm

    I knew Autism Speaks was evil! I knew it! ( a post from an autistic child) :-)

     
  11. ellen

    March 22, 2014 at 9:44 pm

    I think Panera Bread has stopped supporting Autism speaks, if I recall correctly after the campaigns last year, they withdrew support form AS. If that’s the case, can you update this to remove their name? They should be supported, not boycotted.

     
    • thecaffeinatedautistic

      March 22, 2014 at 11:47 pm

      You’re right, and I do need to update that. Thank you for reminding me to do so!

       
  12. ellen

    March 23, 2014 at 1:53 am

    :) Thanks! I went back and made sure after I posted that, just in case they had gone back on their word, but I think they’re still no longer an AS supporter.

     
  13. Jim Barber

    April 12, 2014 at 6:15 pm

    This is an excellent post. My son Luke is autistic, and I couldn’t be more proud of him. He has become a fine young man, and living proof of the mockery that is AutismSpeaks and their sick viewpoint on the world.

     
    • thecaffeinatedautistic

      April 12, 2014 at 8:04 pm

      I am so grateful that parents like you exist. Thank you for your comment.

       
  14. hopefulfox

    April 19, 2014 at 4:22 pm

    This is a fantastic article. My little sister has what was diagnosed as “severe non-verbal autism”, and I’ve always felt that Autism Speaks cared less about helping her and more about keeping “tragedies like her”(something that was actually said to my mother by a special-ed teacher) from happening to other families. She’s 18 now and anyone who knows her can’t deny how smart and caring she is.
    But on that note, my mother and I have had a really hard time finding ways to communicate with her, and in finding resources to help her communicate with the world. And with her recent status of adulthood, we’ve been scrambling to try and figure out what to do to help her after school, and to figure out what would be the best path or option for her as an adult. Do you know of any specific projects, organizations, or anything else that might be able to help her?

     
  15. PJ Murphy

    April 29, 2014 at 5:27 pm

    You might want to add Roland to the list of companies. http://www.rolandus.com/blog/2014/04/16/light-up-the-blues/

     
  16. Ashlen

    May 2, 2014 at 2:32 am

    I found this article very interesting. I’m thinking about writing about it for an assignment, do you happen to have the source of the “Autism Speaks only spends 3% of their budget on “family services.” statistic?

     
    • thecaffeinatedautistic

      June 18, 2014 at 5:07 am

      It comes directly from Autism Speaks’ financial reports, available on their website.

       
  17. Your Everything (@mystyb)

    May 15, 2014 at 9:38 am

    you logic is so off. First of all yes.. they Do and have had autistic individuals on their board and teams. What you don’t seem to get is how this stuff works. Yes they could sit back and hand individuals checks… but they do something better… they get the govt to do it.. so they turn 1 million dollars into 100 million in respite and services. You need to look at the bigger picture. Because they change laws.. yes they could send ONE child to ABA that doesn’t exist in their town and pay what? 50k a year? OR they get a law passed and sends ALL autistic children to ABA and forces the schools to hire them and train them and get them into their town… how much does that cost? billions? You’re not thinking logically. We have so few resources.. you going after the wrong people. people are dying, wandering, committing suicide… things are bad… we need any and all help out there

     
    • thecaffeinatedautistic

      May 15, 2014 at 9:54 am

      I’m sorry. You must live a sad, ignorant existence if you think ABA is a good thing. Secondly, what in the world is preventing an autistic person from doing any and all of the things that you’ve mentioned in this response? I mean, unless you buy the ableist idea that autistic people are less capable. Then I guess you’ve missed my point entirely.

      Also, I wonder why in the world you completely ignore the fact that A$ literally calls us burdens, something that happens to families of autistic people rather than people in our own right. Focusing on the one point that there are no autistic people on the board rather misses the point. Read the whole post and attached links before jumping to a snap judgment there. Rather think that you’re the illogical one, my friend.

       
    • thecaffeinatedautistic

      June 1, 2014 at 7:04 pm

      You are misrepresenting the people who are behind Boycott Autism Speaks by implying that we are all high functioning.

      In addition to this, when autistic people say that we’re not disabled (which few do, unless they’re of the Aspie elitists sort), we mean that we don’t buy into the medical model of disability and instead believe in the social model. It is society that disables us. If society offered the accommodations we need to survive in a world made for NT people, we wouldn’t be considered disabled.

       
  18. unstrangemind

    June 2, 2014 at 12:24 am

    Great post here, thank you. I pulled it up just now because someone asked me “why do people hate Autism Speaks.” You wrote one of the most thorough coverings I’ve seen of the topic. Great work!
    (I’m the person who talked to the New Jersey reporter over the Google thing. that was one of those “straw on the camel’s back” moments because I worked so hard, wrote a press release, made scripts and put myself out there for calls when I’m an intermittently-speaking Autistic with a sleep disorder, and processed the stress from that reporter call for a couple of weeks . . . only to get completely erased along with the scores of other people, Autistics and allies, working on that project. People wonder why I faded from the activism scene. It was more than just one thing, but AS hammered a pretty big nail in the coffin with that one.)

     
    • thecaffeinatedautistic

      June 2, 2014 at 12:39 am

      I remember! And thank you, that’s quite a compliment! As you can see, I haven’t written a whole lot in the past few months, and part of it is similar to what you described but also just pure exhaustion.

       
      • unstrangemind

        June 2, 2014 at 1:46 am

        Same here… mostly exhaustion. Mixed with depression, anger, futility, etc. But mostly just exhaustion.

         

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

 
Follow

Get every new post delivered to your Inbox.

Join 2,513 other followers

%d bloggers like this: