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:

https://thecaffeinatedautistic.wordpress.com/new-autism-speaks-masterpost-updated-62014/

(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

TASH

ADAPT

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

  1. 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!

    Liked by 1 person

    1. 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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      1. I agree with your statement. If Autism speaks is truly for individuals with Autism they would also do what they could for individuals, not only try to find a cure. There are organizations that raise awareness for many disorders and disease who not only try to find a cure but do so with respect for the individuals with the disorders or diseases. Too many stigmas in the world. I have a niece with Asberger’s and I can’t imagine her being any other way she is unique in so many ways she brings joy to my life just being around her.

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    2. You are not speaking for me or my family. those videos help people understand what my son does and what it puts us through. It give them such a massive understanding. So no I do not agree with your stance. Autism at time in some cases is a massive burden. I know I live with my awesome autistic son every day. I see the pain he goes through with his melt downs. And personally I get sick of mild autistic people telling me how it is. Have you ever had your 7 year old son punch you in the face? Have to ever have him stab you with a knife? how you ever had him break all the windows in the house so he can feed his sensory needs? People need to understand and be aware of this. Trying to stop valuable information the Autism speaks offers is just plain nuts. I am truly sorry for what ever it was they did that made you so mad, but I do not support your argument from any angle you give. I am sorry.

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      1. No, I speak for myself. And I speak alongside other autistic people from all walks of life and abilities who oppose Autism Speaks.

        So a video of a woman talking about driving her daughter and herself to their deaths is helping you? Or how about videos that talk about what a horrific thing it is to have an autistic child? How about one that compares it to cancer? Does that help you or your son? Because it doesn’t help me. Or my family. Or my friends. Definitely not my kids. Biased, bigoted videos that paint us as tragedies do not help us. You must be living in some alternate universe to make that kind of argument.

        Funny how you think that all the people who hate Autism Speaks are “mild” (as if functioning labels are in any way useful anyways… Newsflash – they aren’t). No. Many autistic people who oppose Autism Speaks are non speaking, have high support needs. But to you, using a computer/being able to type = “mild autism”. Just another way for you to ignore our voices. Funny enough, or well, not so funny but a thing that often happens is that it’s Autism Speaks who uses the “shiny Aspie” types to tell us all that we’re wrong. They’re the ones utilizing people who say things like “Oh it’s totally ok for me to not need a cure but those poor low functioning people need one so that’s why I sell my soul / work with Autism Speaks”.

        There’s plenty of valuable, respectful information out there. Check out Respectfully Connected, Parenting Autistic Children with Love and Acceptance, just to name a few.

        I also don’t need to give you access to any of my life experiences, but if you think that autistic kids are the only ones who do things like what you’ve written, you’ve got your head buried pretty far in the sand. Sounds like you’re not meeting your kid’s needs or ignoring what he’s communicating to you. I never said life is easy. You try meeting your own needs as an autistic person (fucking hard on its own merit) and then meeting the needs of your two multiply neurodivergent children, all while being a single parent. That’s my reality, and I’m not sitting here whining about how hard it is. That’s all on you, buddy.

        I’m mostly amused by the fact that you talk about how sorry you are for “whatever it was they did that made you so mad” when this entire post is composed of links and information. Read the fucking post! Read it. Then maybe you can extrapolate from that what they did.

        Your son deserves better than your self pitying bullshit.

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      2. Holy crap!! You are the problem!!! The entire problem with Autism Speaks is they view autism like YOU do. “What my son puts us through”. How about what YOU put your son through?

        Your intolerance is astounding. I have autism, and my son has autism. We’re both “mildly autistic”, rather we both have Asperger’s. And if you think for even a second we’re all rays of sunshine and super happy because we’re “mild” then darling you need to step outside of your little fantasy world and take a look around at the rest of us! I am married, and am truly blessed to be. Because even before our son, he had to put up with my crap and that takes a saint. I have broken things he bought me, I have had adult tantrums in front of his friends… oh the list goes on.

        I grew up being labeled by doctors as having “depression, anxiety and emotional/behavioral problems”. I was a straight A student but I was mean – I was disrespectful, I was a unholy terror, a smart unholy terror. I’d throw “temper tantrums” and hit people and break things and my grandmother, my caregiver, never lost patience with me. Heck, had I been diagnosed as a child she probably would have been relieved. I think my childhood would have been much easier and much better had she truly understood me and had the helped she needed – not what was given due to misdiagnosis. You are LUCKY you know your child has autism, it gives you a chance to get him the RIGHT care and give him the RIGHT understanding!

        When our son was diagnosed at the age of 5 after going through many doctors we were both relieved. I thought he had ADHD – I wasn’t hyper but the rest of him was “normal” to me because he acted just like me. I assumed that was how kids were because that was my mirror image. It wasn’t until he was diagnosed that I was diagnosed. And my husband, who is neuortypical, normal and pretty damn sane has never looked at either of us as some sort of burden. He has never said, “HEY my kid and wife put ME through hell because of autism!” no, he says it right, “My son and wife are going THROUGH hell because of autism!”

        YOU KNOW YOUR BABY HAS AUTISM. So DO something to make his life easier! Stop bitching about the “bad” things he does and find a safer and less destructive way to meet his sensory needs. Stop playing the victim, because you’re NOT. Kid needs to feel something smash into his body? Great, get him a punching bag, some play-dough, a trampoline and a weighted vest or blanket. Get him an indoor and/or outdoor swing. Give him a hammer and an old wooden box to smash.

        And yes, my 7 year old has punched me in the face. But he’s my angel. And I forgive him. And I’d never cry victim. Instead, I find ways to ease his problems so that getting punched in the face is avoided. I know the early warning signs of him getting frustrated and I’ve figured out through trial and error how to stop it before it gets that far. I’ve dealt with total meltdowns in public places and the dirty looks they bring and I’ve dealt with the running away, and the bad words, and the calls from the school, and hitting other kids, and I’ve also dealt with the love and amazing personality and the progression and the learning new things and being proud when he tries a new food even if he spits it out on the carpet the second it touches his tongue….

        I personally get sick of neurotypical, non-autistic, people telling me how it is – like you and autism speaks. Because you don’t know what it’s like. You’re an outsider looking in. Which is fine. But at least have some damn compassion and realize that your child, and other children like him are people, with feelings, with emotions and needs – just like you are. Every “level” of autism has it’s own challenges. One woman who has a non-verbal autistic child had made mention that it was easier to take care of her child than her siblings child with Asperger’s because the challenges of that child were far worse even though he was high functioning. Says something, doesn’t it?

        There is a wonderful story (a video, search for it, her name is Carly) about a young autistic lady who is non-verbal. The parents would sit there in front of her, thinking she was basically mentally challenged to boot and say things like she was a burden… right in front of her, all the while assuming she didn’t understand a word they said. Yet one day, this girl who would only scream and mumble and hit and kick and throw things, walked over to a computer and sat down and began typing. She, as it turns out, was very smart and understood every single thing that was going on but was trapped in her body with NO WAY to express her self, her desires her wants and needs. So remember this the next time you go to say something in front of your own child, there is a wonderful possibility he understands everything you’re saying.

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  2. 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?

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    1. 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.

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      1. “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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    1. 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.

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    2. 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.

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  3. 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.

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    1. 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.

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  4. 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.

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    1. 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?

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  5. 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.

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    1. 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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    2. well I am an autistic child and I’ve been through Hell and back. I think that it is very special the way you wish to help your daughter with her son. I am 15 years old and have already stood for more than AS has. I have taken people to court for the mistreatment of me so that they would never get the chance to hurt another innocent adult/child in their lifetime. My mom is an amazing women and if you ever need help, just contact her at (218)-299-7077. That is her work number. She is a social worker for Clay county. If you wish to find a good buisness to help your daughter, lakeland is amazing. Plus there is no treatment to prevent autism, nor is there a way to prevent such things. No matter what there will always be people with autism, but that doesn’t mean they won’t flourish later on in life. It will be difficult at first but what everyone needs to remember is that in the end it’s all worth it. I mean look at me, I’m typing this to you myself. A couple of years ago I wouldn’t have even been able to speak my thoughts non the less plan out a paragraph about them. I send prayers to your family but not because what’s happening to you is bad but because you will need them to stay strong throughout the forks in the roads, because there will be plenty of those.

      One more thing….. don’t ever let that child wish he was normal, or let him think he is different in a bad way. Look at temple grandin for example. Also read the book “Different not less”. It will help alot. Good luck on ur journey for greatness!!!!

      sincearly— autistic_one_of_the_many

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  6. 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??

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    1. 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”.

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      1. 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.

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      2. 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.

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      3. 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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  7. Was sent to an Autism Speaks center in Memphis by the mental health center here, as they didn’t diagnose autism there. They did however try and get me on anti depression meds, and anxiety meds. Anyways I walk in the door, that by some luck was unlocked, and not realizing it was a restricted area. I came in and talked to the people in the office for help, and they sat and talked with me a bit to try and find a solution. Before they could however, I guess the manager called the police, and three squad cars showed up, and had me handcuffed in the lobby. I went into an anxiety attack, and they pulled me outside to get my ID and information before releasing an hour later.

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    1. I’m so sorry that happened to you. I’m not honestly surprised, knowing the type of organization and the type of morals they have (and don’t have). That must have been massively frightening and I hope that you don’t ever have to experience anything like that again.

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  8. Within point number three:

    “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)”

    your logic is seriously flawed. People who have autism do not necessarily see themselves as being autistic first and foremost, or as being defined by that condition, and yet you equate the elimination of the condition of autism with the elimination of those who suffer from it. Did it ever occur to you that many, if not most, of us who are on the proverbial ‘spectrum’ would actually be better people (i.e. more capable, confident and happier) if a way were found to eliminate, or at least treat, autism? Did it also occur to you that a pre-natal test, if developed, would require the prior discovery of that which is inextricably linked to the condition and, therefore, the possibility of identifying and treating the cause prior to birth, with the result that when the child is born they are not burdened by this handicap? You seem to think that any sign of autism (or Asperger’s Syndrome) that is identified within any foetus would automatically result in the termination of that foetus. This is just an assumption of yours, for which you provide no justification.

    There is absolutely nothing – and I really do mean nothing – wonderful about autism or Asperger’s Syndrome. It is a curse, a handicap that makes so much of what others just take for granted almost impossible for us to achieve. You know, things like developing a career, or friendships, the things that actually make life worth living. These things are denied to us, so is it any wonder the suicide rate is so high amongst us ‘Aspies’. Being this way is eternally frustrating, and not just because the overwhelming majority (i.e. >96% of the general population) simply don’t understand us and don’t care either. It is frustrating because this condition is a mental prison, one from which we cannot escape and for which there will never be any possibility or hope for release.

    If I could I would make a very large donation to ‘Autism Speaks’, but I can’t, because I don’t actually have much money. I’m poor because I cannot find work, even the simplest of menial drudgery being denied to me, and it is all because of this rotten, stinking curse. No, you can have it if you really like it so much, but I don’t want it.

    Liked by 1 person

    1. You are free to hate your autism all you like. But maybe not using literal eugenics arguments might be something you could consider trying?

      These are tired arguments. Stop devaluing fellow disabled people’s lives.

      I am Autistic. I am disabled. And yet I have friends and family and a career, though it might not fit other people’s expectations of what my life should be, because it’s not what most people think of as successful. I wrote a post about this just recently. I’m sorry your life is so unhappy. Maybe hating a part of who you are has something to do with that? Or maybe it’s because society doesn’t value us. I mean society also doesn’t value my gender or sexuality and I’ve been harassed and bullied for that too, but I don’t hate myself for that. I hate the people who have hurt me.

      And as much as I cannot speak for the entire autistic population, neither the fuck can you. So. Fuck off with your ideology that is very reminiscent of fucking whiny paaaaaarents and how much our lives suck. I suffer from ableism. Not primarily from my neurology. I’m not better without the way my brain functions and if you can’t see a single good thing about being autistic, well frankly I feel sorry for you.

      Also no one uses the word “handicap” anymore. Welcome to the 21st century.

      Like

      1. No, I don’t hate my life. Why did you just assume I do? No, what I hate is having Asperger’s Syndrome. You, on the other hand, can’t take criticism. All I did here was point out where you went wrong in point number three, and your response to me doing this was to lose your temper and attack me personally using foul language. You even failed to appreciate the fact that, no, I was NOT ‘using literal eugenics arguments’ here, but responding to your own claim that people with autism/A.S. will be euthanised. How else am I to interpret the following:

        “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)”

        YOUR words, not mine. “…eliminate autism, and thus autistics…” A nonsensical claim if ever there was one. Where is your evidence that this will actually be the case? You haven’t provided anything even as simple as a link to the ‘Autism Speaks’ website that clearly and specifically outlines such intentions.

        “And as much as I cannot speak for the entire autistic population, neither the fuck can you. So. Fuck off with your ideology that is very reminiscent of fucking whiny paaaaaarents and how much our lives suck. I suffer from ableism. Not primarily from my neurology. I’m not better without the way my brain functions and if you can’t see a single good thing about being autistic, well frankly I feel sorry for you.” – You

        Oh, how mature. Such erudition, such insight! What ‘ideology’? What on Earth are you babbling on about? Not everything is political, you know. Most things aren’t, actually. If you don’t like dissent, if you don’t like people not agreeing with you, then why the hell do you even have a comments section? I’ve seen your previous responses to others here who disagree, and your attitude towards them is just disgusting.

        “I’m not better without the way my brain functions and if you can’t see a single good thing about being autistic, well frankly I feel sorry for you.” – You

        You feel sorry for me? More like you feel sorry for yourself! If there really is just one, single thing that is actually good about having autism or Asperger’s Syndrome, then please, point it out to me! Just ONE example! Anything at all will do. Here is my list of some of the things about it that stink:
        1. Poor physical co-ordination, including (in my case, anyway) balance.
        2. Inability to appreciate nuance, allegory, body-language, non-literal language in general.
        3. Sensory sensitivity.
        4. Inability to control emotion.
        5. Inability to commit to anything long-term (ex. career, marriage).
        6. Extreme shyness.
        7. Constant and relentless anxiety.

        There, I think seven will do. For now anyway. Will you be able to meet my challenge, and come up with just ONE single good thing about autism? I’ll bet you won’t, in all likelihood just ranting in response, “You f***, just f*** off, you f***!!!!!!!!!!!!!!!”

        Liked by 1 person

      2. I can’t take criticism because I disagreed with you in language that you don’t like? I have a fucking filthy mouth. If you don’t like it, get the fuck off my blog.

        Please tell me how Google’s genome project along with thousands of studies on finding the “autism gene” doesn’t have the capability of causing the same issue that genetic testing for DS is currently causing. I mean, those are two developmentally disabled populations. I’ll wait while you try and make an argument that it isn’t eugenics.

        Good things about being autistic :

        1. Finding a community that understands me and appreciates me for me.
        2. Hyperfocusing on small details that many neurotypical people miss
        3. Finding joy in things like texture of fabrics or the way patterns look or just the way something feels.
        4. Finding a solution to a problem that neurotypical people would never have thought of because their brains don’t work that way at all.
        5. Enjoying the predictability of something in my life, whether it’s doing the same thing every day or eating the same thing. That’s not a negative. Most people would find it boring. I like it.
        6. Stimming.
        7. Special interests.

        I love myself. I don’t feel sorry for myself. I feel sorry for you. But have a nice life. Maybe one day you’ll love yourself for who you are and stop blaming everything on the big bad Autism. Again, you sound so much like whiny autism parents who talk about nothing but about how terrible autism is and how it stole their kid.

        Funny thing is that I literally experience all but one of the things on your list and still manage to not hate being autistic. Imagine that!

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    1. I’m sorry you didn’t notice it before, but all comments are moderated. I just happened to have been near a computer so I replied rather immediately (and approved your comment).

      It’s a measure that exists because I don’t think that unmoderated rape and death threats are acceptable, which was a thing happening about a year or so ago.

      Like

  9. What gets me is the lost of a point of view. Specifically, no one person can speak on the behalf of autism. Your views are perfectly fine and should be noted as your views only. If you or anyone of the readers really know autism, you know there is no one size fits all, and if you don’t know that your comments are an insult.

    Liked by 1 person

    1. I mean, it isn’t like there aren’t hundreds of “wahhhh poor me, my kid’s autistic and you should pity me because my life is so haaaaard” blogs out there. They’re allowed to express their (dangerous, damaging) view. So am I. Don’t like it? Get the fuck off my blog. No one forced you to read.

      Also lol, I’m certainly not alone in my opinion. Feel free to Google “boycott Autism Speaks”.

      Liked by 1 person

      1. Actually, I think torture and abuse that the UN has spoken against but is still somehow acceptable when done to autistic people, is wrong. (I’m talking about the Judge Rotenberg Center). I think killing your kid because you’re stressed out because they’re autistic and you’ve bought into the Autism Speaks narrative of pity and hopelessness is wrong. Autism Speaks has never spoken out against a mother who has murdered their autistic kid. I think that’s pretty telling.

        Freedom of speech, my ass. Maybe give a shit about autistic people and how almost no one sees us as real people. That might be a start. Until then, I’m going to continue to fight against the predominant narrative that autistic people are incapable and worthless and that non autistic people should be worshiped for daring to speak to us.

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  10. I just want Autism Speak$, Autism One, Age of Autism, and their type to keep their greedy hands off our parents’ pocket books. For all those lies they’ve told about us, they don’t deserve a single penny. They’ve ruined America with all this bigotry, hate, ignorance, and lies. I thought America is a free country but NO! those people have to take away our rights as American citizens for their own greedy benefit. I’m so angry that we have to deal with this every year. Here is one thing I would like to say to them “We’ve had enough of your ignorance and LIES!”. It’s time to speak up snd say no to the ableism and cure culture. all we need is love and acceptance. we’re people not puzzles we don’t need a cure.

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  11. I read this blog back when it was first posted and it spoke volumes on why I feel the way I do about Autism Speaks. Today I am commenting for 2 reasons…. One is becaus I love your passion on the topic and 2, because I work with one of the businesses that supports Autism Speaks and wanted to let you know that although Scentsy does support Autism Speaks they are not a bad company. The heart a compassion that is found in our business cones straight from a place of live for all people. Many of those in our company have loved ones who are ASD (my self included). I’ve struggled with this but I also Know that despite some of the downside to Autism Speaks they are brining more awareness to done thing very real! It’s unfortunate they are misguided many times and it is unfortunate that more money doesn’t actually go back to helping those with ASD and their families! This is a big problem with many charitable organizations!

    Like

    1. Awareness is not always a good thing. Awareness of what? What are we making people aware of? Autism Speaks does a good job at instilling fear into parents of the newly diagnosed or those seeking answers. Here’s some more info :
      http://autisticadvocacy.org/2012/04/awareness-is-not-enough/

      It doesn’t matter how well intentioned your company might be, if the community you’re trying to help tells you, “actually this is really harmful, please don’t donate to them”, your response shouldn’t be to try and defend that organization.

      And the thing is that Autism Speaks could help so many people. They just choose not to. They choose to focus on sometimes junk science instead of supports. They don’t care about the people who already exist. They are finding a genome project with Google that they literally named “mssng”. How is that not horrific to you?

      Like

      1. If you believe that they are doing a great job than you must be clueless to what really goes on. Autism isnt something to fear, it’s something to celebrate. While I was with A.S they constantly abused me by hitting me with rulers every time i got a facial expression wrong. I have 2 permenantly broken fingers because of those people. My mom’s bank account was run dry because they corrupted her account, yet they got away with everything in court because their argument was that autistic people aren’t reliable!!!!!! Don’t believe everything you read because that stuff that you posted for us to look at is just crap and lies. You need to actually reaserch stuff before you post something like this on a website because all it does is hurt the people who know better.

        Like

  12. I’m writing on behalf of Bob’s Red Mill Natural Foods to let you know that we are no longer affiliated with Autism Speaks. After an outpouring of concerns from our customers, we ended that relationship. We would love if you updated your list. Please contact us with questions at info@bobsredmill.com.

    Like

  13. Cure it?…Y so many things in this world have been done by people w Autism of one form or another…does anyone think they could have done it if they were neuro-typical…I don’t…I knew I was different at the age of 6…my diagnosis OTOH was only 9 yr ago (I am 45) I survived it sucked and still does sometimes…but the things I can do…the things I sense that others cannot hear or that they ignore I see….would my life be better without it…maybe…but would I be me…NO! we don’t need a cure in many cases what we need is understanding and sometimes a little help…..and most important of all bullies to get off our backs….

    Nice write up…I will do some examination myself as I never take anything at face value…but I like your style

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  14. Thank you. Yes aspergers can be challenging for me, and sometimes I hate having it but overall I have a positive view of my neurological disorder. I am not sorry for standing up to people, and even though it’s not the best I haven’t got the energy to deal with everyday ignorance and instead of finding it insulting, it’s really funny how narrow minded some people are to me now. I just see it all as a funny, big joke with how tiny the scope of awareness in ‘normal’ people’s minds are.

    Here’s an experience I had in November (I attend a british day college, for 16+ students, I’m 18)

    I had a horrible assistant teacher who emotionally bullied me. The college lecturers didn’t see anything wrong with it, because they have outdated views on handling autistics. My lecturer told me she’d had a class with a group of boys with aspergers. First of all, they probably had years ahead of me in the diagnosis section and also, females have more hormones so emotionally will cry a lot more and be overwhelmed in that case – me in case point.

    I don’t think they can recognize when they, themselves are doing passive bullying or when someone else is, because in their mind’s eye it’s ‘just discipline’.

    My assistant teacher pretended to be nice to me. Then when I became overwhelmed, instead of helping me she acted like I was some 5 year old having a tantrum and constantly belittled me, in little ways even my classmates would pick up on. She didn’t do it often, but would shout at me for stupid things – I didn’t want to turn to face the direction the rest of the class was, because it made me uncomfortable but she was vocally aggressive and demanded I turn around. She’d constantly be stern and demanding, overstepping her boundaries to control me. It drove me insane, especially in an environment where you’re meant to be treated as an adult. She once got upset that I complained to my lecturer she talked too much and distracted me, she spent the entire day guilt tripping me, saying ridiculously over dramatic statements such as; ‘but rebecca, I thought I wasn’t meant to talk’, and she snapped once; ‘you’re not meant to be having a discussion’. Every day I use earphones when the lecturer isn’t speaking, I’d gone insane trying to block out the woman’s constant prattling and she yelled my name out loudly, while I had my earphones on to grab my attention. I have aspergers, just to point out and she’s meant to emotionally help me through meltdowns, but clearly she must have felt odd in a position she had little control in and wanted to gain some through similar situations constantly. She probably expected me to be a typical ‘stupid, ugly ‘retard” stereotype and got annoyed by my sense of independence over her. Must’ve been put out that someone disabled was prettier, younger and far more intelligent and decided to bully me. 😉 She seemed pretty insecure to me. As a tangeant, I feel that this happens a lot – people are surprised I have autism, and feel insecure about themselves so pick on me as an easy target because I’m slightly off on the social scale.

    As is the case when you’re put through emotional abuse for over 2 months, I blew up and swore that she was a bitch and a cunt in a corridor. That day, here were the events: I was starting off the morning class, and had to print something off for my coursework. I felt too claustrophobic, and asked if my AS could adjust her chair slightly, it seemed such a simple request but she went all huffy (as she usually does) and she stayed in my line of vision. My throat got all clogged up and I couldn’t speak, I could feel the onset of my panic. She just sat in her chair opposite me, with her hands primly in her lap, staring me down like with an unamused smirk, not a word as she watched me slowly break. Waiting for the inevitable instead of trying to help me feel calm – now that I look back, she must have tried making me look bad by pushing my buttons. She didn’t ask how I was, was not warm and caring a single bit.

    After a while she got agitated because I’d been frozen in my chair for a while, stuck in the classroom. I couldn’t speak, and simply gestured at the work that was meant to be printed off, with the printer tab open and moved my hand to the door – she knew, that I wanted her to print something for me. But in a sickly sweet, patronizing tone she waved her hands around and leaned forward saying; ‘I don’t know what you’re trying to say!’ Again, silence on my side and she asked: ‘Are you being ignorant AGAIN Rebecca?’

    Then I stormed off. Instead of hiding and crying, I couldn’t take it anymore and went to one of the guys in the disability department and told me of my troubles with my AS. I’d had a panic attack not too long before, and he could see I was really upset and sent a message to the manager as well as my lecturer. I felt better after a while, and headed off to my next class feeling good for sorting something out like a grown up. My lecturer spoke to me, before it started and told me I could come across as blunt and rude sometimes, which fair enough I am oblivious to when I am doing it and agreed to discuss things with my AS about our communication difficulties.

    The devil herself arrived not to long afterwards, acting all casual and motioning her finger as she would a child going ‘we need a word’ all strict strict, wow I’m terrified. Then in her irked voice, in a corridor instead of a private office or classroom, opened up with;
    AS: ‘Cath told me you don’t want to work with me anymore?’
    ME: ‘You see, there were communication and understanding difficulties -‘
    AS: *scoffs, motions her head in a disbelieving manner*
    -I can’t remember a lot of what was said-
    ME: I know I can come across as rude sometimes -‘
    AS: *like an impatient child, she interrupts me as if she’s been dying to say this* NO! You’ve been rude to me the whole time.
    ME: I understand your point of view –
    AS: No, you always turn everything to YOUR side!
    Then I started screaming insults in her face, god I was so mad everything’s black splotches after that. I don’t even remember who left, or where she went straight afterwards. I was so furious I was shaking.

    I think I was let off the hook because I’d tried being reasonable that day. But still, the adults in charge looked as if I was to blame for the situation. As if I was the bad, horrible person when I’d tried my best but it didn’t work out. And I was forced to apologize. BUT if I was going to do it, it wouldn’t be a flimsy letter I decided – in person, like an adult I would apologize (only for the swearing) to my ex Assistant Teacher’s face because I am not a coward. Again I was willing to prove myself.

    I did it, outside Keith’s office but she stared at me with those stupid eyes of her, blinking and without a word brushed by me. For a woman in her goddamn fifties/sixties, she sure acted like a child about the whole thing from start to finish, some people obviously don’t grow up, but you know…the adult’s always right, and she still has her job when she isn’t fit to maintain her role either way. That’s what infuriates me, that my AS left the situation still ignorant and will be hounding her next poor victim. Everyone tells me to get over it, but I’m disgusted she still has a job.

    p.s – every time she sees me in college, the woman scurries away like a cowardly mouse that’s been trodden on. She can barely stay mere few feet from me, or even look me in the eye like the stinking excuse of a human that she is.

    Like

  15. We took the “road less traveled on” with our child (& yes, that HAS made all the difference). We were attacked for not allowing the doctors & such get a hold of our son. We kept him undiagnosed & out of “early intervention” because we didn’t want him treated like a guinea pig, freak & like he needed fixing! In our eyes, he didn’t. We got flack constantly & basically called horrible parents who would ruin our son’s life because we didn’t jump into the system and get “help” for him. Those “Autistic traits” my son had/has? I loved them. They were what inspired me to start making videos of him long before I knew it was Autism. I loved his quirkiness; his uniqueness. He just turned 11 a week ago, & the naysayers have long since shut their mouths because he’s doing so well. I never pushed him to be social. He decided on his own when he was almost 5. He started noticing other kids & it went from there. Now he’s more social than I am. He is a big ham & loves to get attention. But he also values his alone time. He couldn’t really carry on a conversation until he was around 8, & even now he does struggle sometimes to spit out what he needs to say, but holy cow, that kid: His mind is AMAZING! He is so funny, intelligent & innocent. He is carefree, and he doesn’t give a hoot what anyone thinks of him. I LOVE that about him. I wish I were more like him in that way. I’ve always just encouraged him to be him, and I’ve taught him that “weird” is not a bad word, even if someone means it that way. Weird is GOOD because it means you’re different, & that is not negative, no matter what anyone says. I honestly wouldn’t want him to be like other 11-year-old boys. Yes, we have our challenges, but holy cow—parenting ANY child is going to have its challenges. Parenting is not for the faint-hearted—but I wouldn’t change him, & I actually have to practice some major self-control when people infer that my son is damaged goods. Someone did that the other night & I, as nicely as I could, put him in his place. I pointed out all of the STRENGTHS of Autism. Why does everyone always look at the negative???????? Anyway, I’ll shut up, now. It’s late & I’m tired & my boy is still awake. Yep, after midnight. Mr Night Owl. We just go with it because he’s homeschooled & I’m a night owl, too, so it works. 😉 Anyway, I don’t like Autism Speaks, either. I won’t support them and I’ve lost friends over my stance on many things—friends who also have kids with Autism. Apparently my view isn’t popular, but I’ve encouraged & inspired a few moms with children with Autism, and helped them see it as a gift, & that at least makes me feel like I’m sometimes doing something worthwhile.

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