Why I am Against Autism Speaks (and you should be, too)

Edit 6/20/14 I have updated this and created a new and hopefully better sourced and easier to read document.  Please go here:


(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 4% 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 advertisments, 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 same person who 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 a very large 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:

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).

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):

  • ATA Martial Arts
  • Bachman Pretzels
  • Bob’s Red Mill
  • Build A Bear
  • Capital One
  • Casey’s General Stores
  • Continental Accessory
  • Dollar General
  • Dover International Speedway
  • eTrak
  • Fashion Bug
  • FedEx
  • Fox Sports
  • GAP
  • Joe’s Crab Shack
  • Kid Natural Hero
  • Landscape Structures
  • Lindt and Sprungli
  • Mattress Warehouse
  • Med Claims Liaison
  • Modell’s Sporting Goods
  • Panera Bread
  • Pump it Up
  • Queens Flowers
  • Scentsy
  • Shoprite Supermarkets
  • Sprouts Farmers Markets
  • Stadium NEST Fragrances
  • Stella & Dot
  • The Home Depot
  • TJMaxx
  • Total Wine and More
  • Toys R Us
  • White Castle
  • Zales

Some 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



133 thoughts on “Why I am Against Autism Speaks (and you should be, too)

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  3. I am autistic and I don’t care. I honestly would jump for joy if a cure was found. This illness, this disease–yes, I dared call it those words! Sue me!–ruins my life every day. I would give my arm for a cure. I have never seen anything that Autism Speaks says that didn’t ring true for me, and I support everything they do. I AM AUTISTIC AND I SUPPORT AUTISM SPEAKS. SUE ME!

    • No, I won’t sue you for your personal stance. I will say that you don’t really give much of a crap about your fellow autistic people, the people who are like you, if you don’t care what we have to say. I don’t think every aspect of Autism is awesome all the time. But I’d rather be respected for my humanity rather than disrespected and told it’d be better if my family tortured or killed me.

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  5. I have Asperger’s. I actually found this out in the 7th grade. Asperger’s is a form of Autism Spectrum disorder. In my case, this affects mainly my social skills and emotions. Some symptoms can include avoiding eye contact, lack of empathy and more (full list is here: http://www.webmd.com/brain/autism/tc/aspergers-syndrome-symptoms ) Also, in my case, this has benifited me with a gifted mind, which I believe is related with the follwing quote from the link “Be preoccupied with only one or few interests, which he or she may be very knowledgeable about. Many children with Asperger’s syndrome are overly interested in parts of a whole or in unusual activities, such as designing houses, drawing highly detailed scenes, or studying astronomy. They may show an unusual interest in certain topics such as snakes, names of stars, or dinosaurs.” I do take part in unusual topics for my age, including my own unbiased opinions that could work in political debates, such as the recent Religious Freedom Restoration act. I have interests in visual and performing arts, game design, and writing (which I admit get in the way of my academics a few times). Now, let’s get to the point I really want to make. Just from reading this, it scares me to know that these people think I’m a burden to society. Now, honestly. From what I was willing to share to you, dear readers, do you think an adolescent who is a good writer,does well in the field of arts, wants to become a video game developer (I plan to keep the games below rated M, fyi) and can actually create a detailed debate on certain political topics that shows both sides of the story a burden to society, just because of something that’s out of my control?

    • There are people who would view you as a burden on society. I don’t believe that any person is a burden, and it doesn’t matter whether you are diagnosed with autism or Aspergers or something else. It doesn’t matter whether you are productive enough. You are a human being worthy of love and respect.

      • “You are a human being worthy of love and respect”. Spoken so eloquently. The world needs more peacekeepers like you . The world needs you, you who takes a stand for those with autism like yourself (some of which who cannot do so for themselves). You are an example of someone who challenges the autism stereotype. The idea that autism is misrepresented and funds are not allocated effectively to help those who need it, is a great discomfort to me. That anyone would advocate that individuals with autism are less deserving of life or that it is acceptable to kill or harm someone with autism is appalling. We should all be so lucky to know someone with autism. This obsession with everyone in the world having to be the same, needs to stop. It takes all kinds to make a world and I would rather that world be a rainbow of authenticity , rather than one devoid of unity ,ostracizing the colour and light within each and every one of us that should be celebrated in the first place.

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    • How many sources would you like? 100? 1000? There’s a ton in the text of the post. Try clicking on the words with hyperlinks, maybe. Or use Google! It’s not hard to copy a phrase from my post and, you know, paste it into a search engine.

      Really, what do you expect? This is a basic master post. It has links. Use them. I’m not going to hold your hand the whole way while you figure out this shit for yourself.

    • In addition to that, there’s an even bigger master post with links and more details linked in the very first line. Please, stop demanding that people hold your hand when it’s laid out there for you.

  9. I think perhaps we’re neglecting to consider the difference between being a human being with dignity, and being a human being who contributes more to society than they take from it.

    All humans have innate worth, but this doesn’t mean that some of us, due to various disabilities that we were born with or acquired by accident, don’t place an unduly large burden on others. High-functioning autistic persons often don’t fall into this category, but autistic characteristics in general – the inability to diversify one’s interest and abilities, social incompetence, and extreme emotional and physical dependence – ought to be see for what they are: namely, negative things. It’s very difficult financially, emotionally and physically for non-autistic persons to live with autistic persons. That alone should indicate that research providing methods of reducing autistic characteristics ought to be desired.

    • First of all, don’t bother using the words high functioning, because they don’t describe anything concrete at all.

      In addition, separating autistic people into categories like that as an attempt to say “Well, these people are all right because they can contribute X, y and X to society” is really awful because not only does it demonize autistic people who can’t do certain things but it also it minimizes people who appear normal enough to you but who still have significant needs that you’re completely ignoring.

      Nah, I can concede that yes, it costs money to take care of an autistic person who needs more care than most. It also costs money to send autistic and not autistic people to college, to pay for medical care for a variety of conditions. That doesn’t mean that a cure is warranted or needed.

      I mean, dealing with non autistic people who talk about me and people like me the way you did is burdensome, but you don’t see me trying to cure you all, do you? Maybe you need a cure for your bigotry.

  10. Measurements of the ‘functionability’ of an individual are useful as far as legislation on things like healthcare and state-funded programs are concerned. In general, high-functioning individuals are low-maintenance, and low-functioning individuals are high-maintenance, and this has specific, concrete effects on financial sectors like the percentage of tax money that goes to funding a certain program. Obese individuals, for example, take more taxpayer’s dollars in terms of healthcare, and therefore we have state-funded programs designed to reduce obesity.

    If a certain group of people posses certain characteristics, it is not bigoted to point them out and, if the situation calls for it, remedy any problems created by these characteristics. This is what we do for the homeless, for example. To pretend that social programs for the benefit of homeless is “demonizing” them is, frankly, short-sighted, and the same logic applies to autistic persons.

    The ultimate problem lies in the belief that autism itself is not undesirable. Autism in its most extreme forms produces adults who cannot properly feed and clothe themselves, who cannot communicate, who are reduced to the level of infants. This is not good. This is not desirable. This is not ideal. And while autistic persons have just as much human dignity as normal human beings, they do present a unique case that requires a definite program of research and healing.

    • Fine, if you think that is the case, feel free to give me a definition of what a high functioning autistic person is and what a low functioning one is. Be specific.

      An autistic person who can speak and write, who has a college degree, but who cannot work or live on their own, are they high or low functioning?

      An autistic person who speaks sometimes, who is married and has children but relies on their spouse to help them communicate and make phone calls and perform some household tasks, are they high or low functioning?

      An autistic person who lives in a community of other autistic people, who help each other, who may or may not speak, may or may not work, may or may not toilet independently, who relies on others for many things, just like every other person on the planet – where do you draw the line between low and high functioning?

      Because it’s pretty damn arbitrary and it helps no one. It takes away the rights of those who don’t communicate like you think they should, and therefore you deem them not communicating and even maybe not thinking, because speaking verbally is what, the only way to communicate? Nah.

      You wanna talk about how helpful these bullshit labels are? Because they’re not at all. You can look at my kids and tell which of the two society labels as low functioning and which society labels as high functioning, but that doesn’t translate to anything helpful in the real world. The one you think is high functioning is far more likely to be overwhelmed by sensory stimulus than the other, by the way. Your assumptions would be wrong.

      Oh and you want to talk about obesity? Are you going to talk about food deserts and the problem of poverty? Are you going to talk about the different health needs people can have or are you just gonna focus on those gross fat people?

      It isn’t demonizing to point out a person is autistic. It’s demonizing to deny a person’s humanity and their rights based on what you think their understanding is. It’s demonizing to say that this person looks like they’re low functioning and can’t communicate at all despite the many signs that they are communicating nonverbally because I can’t be bothered to find another way to communicate, and because of this assumption, I’m going to strip them of their rights and tell them that I, as a non autistic person, know what’s best for them and that they need a cure rather than acceptance and accommodations and understanding.

      Plenty of people demonize the homeless, because again, we haven’t addressed the mental illness and the poverty issues that cause homelessness.

      Autism isn’t undesirable for many of us. Some of us have had to struggle a lot to come to that realization, especially when we are bombarded by messages of how very wrong we are for simply existing. What gives you the right to say that we shouldn’t exist? That we are better off without being who we are, maybe never have existed at all just because we aren’t profitable?

      Also, autistic people are normal people. We just don’t fit your whole ideal of what a person should be.

      I’ve heard it all before. And it’s still disgusting rhetoric that hasn’t been rehashed many times. I’m still going to argue that you’re wrong. What would it hurt for people who need assistance to get it?

  11. I am sure the companies you listed as contributing to “Autism Speaks” thinks they are doing the right thing–Pump it up, for example , depends on children for their business; bob’s Red Mill is a very good company. I just looked for the first time at Autism Speaks, because I want to find ways to help my daughter with her recently diagnosed autistic son and I want this child, whom I love beyond all,to have the best chance for the best possible life and that means to follow his dreams just like any other child. As far as research to prevent autism, why in the world not? I don’t see research as devoted to the ability to abort a fetus who might become autistic. That to me makes no more sense than the parents who refuse to vaccinate their children because they think it causes autism. If Autism Speaks does not do the right thing with their money, then possible contributor’s should know.

    • I’m sure your comment was well intentioned. But it missed the mark in a big way. Autistic people have been decrying Autism Speaks for a decade now. Do you think that we haven’t contacted the organizations that contribute to Autism Speaks? We have. Some ignore us. Some don’t care. Others respond with vitriol and tell us to shut up because we clearly don’t know what it’s like to be a parent to an autistic person (because that obviously trumps the lived experiences that autistic people have, right?). Of course, I’m both autistic and a parent so the fact that I exist is just too much for some of these people.

      Why wouldn’t we want a cure? Because being autistic doesn’t mean being sick. It means that your brain processes the world differently. Are there things that I wish I could change? Of course. That’s why I’d rather look into research that makes life better for autistic people instead of research that finds a way to eliminate autistic people.

      I want people to listen to autistic people. I want people to stop treating Autism Speaks as the authority on what it’s like to be autistic. I don’t want them to be the first place parents of newly diagnosed autistic kids go for information. I want that to be the autistic community.

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  14. You are brave to put this up online. I agree with you on almost everything said here. I have been diagnosed as schizophrenic with mild traits of aspergers, which means I share similar traits and symptoms to others suffering with similar pathologies. I think the problem essentially lies in the bigger picture, not just with syndicate corporations, groups and businesses like Autism Speaks, that simply want to create stigma and then profit off it at the expense of decent human beings like you and me, but it lies with the medical establishment and psychiatric association itself and their modus operandi which is predicated on circularity and pseudo science. That is to say I still think mental illnesses exist but not simply because doctors SAY SO without question, and then simply drugging us and bandaging the symptoms haphazardly, and clinically, without truly understanding the life Meaning of our suffering. What concerns me about you, however, and I mean to say this with sensitivity, is that you seem to identify with this illness thereby disallowing you to have a subjectively felt pathology, and further “objectifies” your mind, body and well-being to a reducible, measurable set of scientific “certainties” which reduces the quality of your life. There are a whole plethora of questions unanswered by this establishment which I will now say, albeit in a far too cursory way: What if ‘explaining’ an illness is one thing, but understanding it is quite another? What if illnesses have life meanings and not just scientific ‘explanations’ and biological ‘causes’ or ‘cures’? What if the life of the human body cannot be separated from the life of the human being in all its existential dimensions – personal, social and economic, etc? Doctors treat the body (and mind) as a biologically reducible Object and not as a Subject. Doesn’t this provoke you and I to be exceptionally critical of their methods?? Don’t you think this immediately suggests there is something seriously off and wrong about their thinking and operating??

    • I don’t think it makes me brave by any means to point out massive glaring issues with Autism Speaks and how they view autism as this life ending thing that must be eradicated at all costs while profiting off of the same tragedy rhetoric.

      I am a big believer in Neurodiversity and the Neurodiversity paradigm, which you can read about here : http://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/

      Autism isn’t an illness. I don’t have schizophrenia, so I cannot say whether or not this is classified as an illness or not. Autism is a different way of thinking and being that colors the way I interact with the world. It isn’t an illness or a disease to treat, though there are things like accommodations to make certain aspects of Autism or related symptoms easier to handle, like wearing headphones in crowded and loud places, bringing along a stim toy to reduce anxiety in social situations, practicing possible outcomes of important conversations with a friend before actually having the conversation. But that’s not a treatment and that’s not a cure. I dislike the medical model of Autism very much and much prefer the social model. Read more on that here : http://www.autismacceptancemonth.com/resources/101-3/ways-of-thinking-about-disability/social-model/

      I don’t know exactly what you were trying to say when you said that I “seem to identify with this illness, thereby disallowing you go have a subjectivity felt pathology and further objectifies your mind, body and we’ll being to a reducible, measurable set or scientific certainties which reduces the quality of life”. But I think that you mean that you as an outsider get to tell me that I can’t be objective about autism be because I have it, that I can’t offer opinions on my own experience because I’m too biased? And that you can decide what quality of life is and whether I have good quality of life because you are “objective” when I “can’t” be.

      To which I say, bull fucking shit. Do you berate members of the Deaf community for not being objective enough when they say to the world that deaf doesn’t mean broken and when deaf parents hope that they have a deaf child because deafness is more than just a disability, it’s a community? Do you push for cochlear implants on toddlers because being deaf is, to you, inherently negative? The same thing can be said of Autism. Autistic people view our autism as inherent to who we are, much like the Deaf community views being Deaf as inherent to themselves and as much a cultural identity as a disability.

      Autism is not an illness or a disease. It is a disability, and whether you believe that is internally caused or if you believe it’s externally caused by lack of accommodation in the world is up to you (I fall somewhere in the middle). I don’t think it’s something to be cured, I don’t think that non autistic people get a say on whether or not our life fits some stringent set of parameters to meet your standard of what is “quality of life”.

      • I apologise if my post doesn’t make much sense, I struggle to get my point across alot of the time. I don’t think you are ill and I hope I haven’t insulted you in any way.

      • I’m not insulted. I just don’t think you should be telling me I have a low quality of life when you know very little about me.

      • I will not be publishing your most recent comment. I am by no means thin skinned but I absolutely do not tolerate unchallenged bigotry in the comments section of my blog. I asked you to explain your bullshit comments and instead of doing that, you replied with more bullshit.

        You don’t decide what platform I use to communicate. You are a sad, disgusting human being and you need to go back to Reddit to reside with the disgusting meninists and trolls where you belong.

        Fucking scum, that’s what you are. You don’t get to hurl slurs and use my diagnosis as a slur to demean people and go unchallenged. Fuck you very much, sir.

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