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

05 Mar
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:

http://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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93 responses to “Why I am Against Autism Speaks (and you should be, too)

  1. Random Linker

    March 7, 2013 at 5:25 am

    Here’s a really, really big list of such links: https://en.wikipedia.org/wiki/Talk:Autism_Speaks/Controversy_links

     
    • Shirley Konkel Greene

      June 18, 2014 at 7:50 pm

      I am against his organization, too. It was founded by a celebrity who said her son was autistic. He wasn’t! I know autistic people and have a son who may or may not be (on the “spectrum”). I simply do not believe the figures thrown about these days about how prevalent the condition is. I am all for any support needed, but Autism Speaks is, and always has been, a publicity tool.

       
      • thecaffeinatedautistic

        June 18, 2014 at 8:09 pm

        Actually, it was founded by grandparents of an autistic boy. I think you are thinking of Generation Rescue, founded by Jenny McCarthy. I agree with you about the prevalence (sort of). Autistic people have always existed, and probably in the same percentages as we now diagnose in autistic children. (I can pull up studies that lead toward this conclusion, if you’re interested). We simply had different names for it and some people received different diagnoses and some people received no help at all except to be shipped off to institutions.

         
      • Sheogorath

        June 22, 2014 at 1:25 am

        Actually, Autism Speaks wasn’t founded by Jenny McCarthy (whose son Evan has Landau-Kleffner Syndrome), it was founded by Bob and Suzanne Wright, whose grandson Christian, the son of their daughter Katie, is Autistic. I’ve done a lot of research since I became the latest Autistic person to be silenced by Autism Speaks.

         
      • thecaffeinatedautistic

        June 22, 2014 at 1:37 am

        Precisely. Yes. Some people seem to be confusing Generation Rescue with Autism Speaks.

         
  2. Patricia

    March 13, 2013 at 4:39 pm

    Would you contact me? I want to start the process into a federal investigation into Autism Speaks non-profit status, revenue generation and violation of Human Civil Rights. I believe are at the ready to actually “Own” the genetic biomarker on the DNA strand that has been identified as the “neuro-intellectual gene” ….. That phrase is coined by me. “Scientists” have “discovered” an actual link that shows Autism is related to “ADHD, bipolarism, schizophrenia and some other “mislabeled”, “misdiagoned” condition, dis-order, dis-ease, dis-ability”. I am Autistic, Naturally and if it takes me until my Natural Death, I Will NOT ALLOW AUTI$M $PEAKS to Negate my existence, render me obsolete by erasing me from the Genome! Like I have Right Being Alive! I believe Robert and Susanne Wright have some of Hitler’s DNA and Blood running through their veins because it’s the only reasonable and logical explanation for them wanting to DISMISS AND DESTROY THEIR OWN GRANDSONS EXISTENCE. I heard that the Father of their Autistic Son hates them, his Parents. I Predict that the Grandson is going to “snap out of it” ’cause that’s what we Do, when we Finally starts Speaking!” (palm to cheek slap) Wouldn’t it be Absolute Poetic Justice if the Grandson Grew Up to become an Amazing Civil Rights Lawyer, For Autism, helping to Lead the federal and U. N. probe and Civilizations biggest class-action civil law suit Against His own Grandson??? That poor Child! What Hideous and Inhumane “experiments” they must have performed on him since he was a baby. You know All Children are at the mercy of Adults, their Parental Guidrs and that’s Why Children on this Planet have no Civil Human Rights, Right? That’s How Illegal, Inhumane, Horrific Human Experiments can be conducted. Autism Speaks ALREADY OWNS THE DNA SAMPLES OF 1200 CHILDREN!!!!! My GOD, this is Worst Than The Holocaust of WWI and WWII. I am going to stop now. I am working on the International level. Please join ANCA Radio on Blogtalkradio.com and http://www.naturallyautistic, if you haven’t already :) . Leonora Collura-Gregory is Naturally Autistic, like Me and the other 1.47 BILLION AUTISTIC on Planet Earth, and she is leading the international autism and intellectual abilities movement at the highest levels: Government, in British Columbia Canada. She is receiving the highest civial award by the government this week; she and I are Friends :) ….. Its time to Wake This Planet Up. Autism Speaks is about 21st Century Eugenics and Genocide and GOD will NOT let them through. Autism Speaks cannot Speak For Anyone because They Don’t Know How To Listen to Their Own Children and Grandchildren. Bob and Susanne’s Grandson has been Speaking to Them since since he was Six. Do you know if his name is Alex? Bless You and your Angelic, Aswesome Autistic Gifts, because that’s what Autistic Children are and Grow Up to be, like I AM :D ….. Peace, Patricia

     
    • Martha

      November 13, 2013 at 7:04 pm

      Did you ever start this?

       
    • Gunnar K.

      April 4, 2014 at 1:18 pm

      Everyone here needs to calm down. As a former graduate student in bio-engineering and a current research fellow at Novo-Nordisk I can promise you nobody, NOBODY in the field of genetic research is trying to kill you. What we do has absolutely nothing to do with persons currently living. The field of study that involves genetic manipulation of live people is called Eugenics, and that’s entirely a whole different ball game. As a danish jew who had real live family exterminated by the nazis I find the comparison not only uneducated, but really really offensive. Trying to prevent people being born in the spectrum is only one of numerous potential benefits of the work we do. Would you also want people to continue to be born with genetic predispositions to down’s, cancers, 22q11.2 deletion, and literally THOUSANDS of other genetic conditions that may not only prevent them from having a chance at an average quality of life, but even kill them prematurely? Think not only of the impact these conditions and disorders have on the ones who live with them, but their families and loved ones as well. I will continue to try and save people from diseases which with modern technology and tools could be in the near future ENTIRELY preventable, and would really, really appreciate if you didn’t use the words “scientist” and “discovery” in quotations because there are some of us (like me) who work our entire lives to understand more about what is going on biologically. SO PLEASE STOP COMPARING WHAT I DO FOR A LIVING TO GENOCIDAL FACISM, BECAUSE IT IS NOT AND WILL NOT EVER BE. thank you, sorry if any of this post doesn’t make sense, I’m a little upset that people out there really think like this and english is not my first language.

       
      • thecaffeinatedautistic

        April 4, 2014 at 1:28 pm

        Fine, then tell me another term for killing off a group of people for traits that they are born with, because I don’t know a better one than eugenics. Interesting that you mention Nazis because first, I certainly never made the comparison (because genocide and eugenics aren’t precisely the same thing) , and the Nazis got many of their ideas for eugenics from the American medical establishment.

        I frankly think you have no idea what autism is. I think this because of the way in which you talk about diseases. This is about autism and not about any other ailment. There are diseases that probably should be investigated and studied to be seen if we could improve quality of life, but elimination of people because hey, it’ll make their parents’ lives easier is ughhhhh. I am a parent of two autistic children in addition to being autistic myself. I don’t need a cure and I don’t think my kids would be better not having existed. Or having been neurotypical.

         
      • Kim C

        April 18, 2014 at 6:58 am

        Maybe its because English is not your first language or simply because your promoting a double standard but I don’t think your exactly helping yourself by stating “NOBODY in the field of genetic research is trying to kill you” and then continue on to say your attempting to stop people from being born who will suffer from such things as autism and preventing people from being born is a benefit…you are mistaken sir. Personally I’d half to say preventing someone from being born because they will have a disability is still a form of killing someone and I don’t think your doing a sufficient job of supporting otherwise. Prior to reading your comment I have never in my life said genetic researchers are intending to kill people in order to rid a disability but frankly you, yourself have just stated this.

         
      • QueenAutiIndigoAngelDiva :)

        May 29, 2014 at 11:49 pm

        Gunnar,
        I am a Clinical Research and Development Professional and SME in the CDM/Clinical Data Management arena of the Life Science Industry, 1985-2008; having worked for: Johnson and Johnson (I’m vested); STATPROBE (CRO); ICSL/PCMC (3rd-party Managed Health Care Research and Sales Co); Baxter Bioscience; Kendle Intl (CRO); ICON Clinical (CRO); Keryx Biopharmaceuticals (SMO/CRO); Novartis Pharmaceuticals; Averion Intl (CRO); Cognizant Technology Solutions (on-site at Forrest Research Inc & Sanofi-Pastuer) until the Global Life Science Industry laid me off for good, knowing I am Autistic.
        I started out in QA Manufacturing and was a Contractor and held the role and responsibility of Director 3X, at Management title and pay. My Invention/Intellectual Property was stolen by J&J in 1991. I worked in every single therapeutic area there is and was an SME in Oncology, identifying Small Cell Cacinomas and was helping to design a CRF for Genetech for a Breast Cancer PH-III Trial, at Keryx Biopharm, as a Contractor. I Do NOT have a College Degree ….. Yet!
        Though, I am currently enrolled in my 8th College, since first entering college straight out of HS in 1981! I also worked for Dunn & Bradstreet (98) and Ernst & Young, LLC (99) as a Consultant.
        I KNOW Genetics, Eugenics and Human Experimentation to eliminate a certain segment of society on THIS PLANET so, You Gunnar, Can Go SUCK IT!
        I was raised neurotypically so NOW, I am Pre-Law, BABY :)

         
      • Sheogorath

        June 22, 2014 at 1:30 am

        I’m sorry, but how the f### would you prevent Down’s with anything but an amniocentesis test? Everyone knows that it’s caused by a spontaneous mutation that causes a baby to have three copies of it 21st chromosone instead of two. That’s why it used to be called trisomy 21.

         
    • John

      June 18, 2014 at 2:27 am

      AS is the one non-profit you want to go after? Go after the NCAA, FIFA, LDS Church, etc. Much worse.

       
      • thecaffeinatedautistic

        June 18, 2014 at 2:42 am

        Oh, I’m sorry, I’m only allowed to care about an organization if it’s really bad (determined by what, your arbitrary standards)? And I can’t care about more than one thing at a time? That’s not possible in your world?

        Autism Speaks is hardly a nonprofit. And supporting the torture and abuse of autistic people isn’t enough? Draining funds from legitimate organizations that help autistic people in our own communities isn’t bad enough? Standing behind a board member who discussed frankly the murder-suicide she had planned in front of the daughter she’d planned to kill isn’t bad enough for you?

        Well, okay. That’s some fucked up priorities, but all right. Typical of an ableist society, of course.

         
    • John

      June 18, 2014 at 2:31 am

      Having DNA samples of 1200 people is worse than killing 12 million people? Are you on the pipe?

       
      • thecaffeinatedautistic

        June 18, 2014 at 2:46 am

        1200 people? Where did you get that number? And where did I ever compare what’s happening now to Nazi Germany (which is what I’m assuming you’re referencing)? You did that. You’re reaching for a comparison that I never made.

         
      • thecaffeinatedautistic

        June 18, 2014 at 2:48 am

        Eugenics is not synonymous with Nazi Germany. It began far earlier and unfortunately has continued long after.

         
  3. mlrock2012

    September 3, 2013 at 7:00 pm

    Reblogged this on The Disaffected American and commented:
    This article does a nice job summing up why I despise this evil, genocidal, and paternalistic organization!

     
  4. Rubye

    September 13, 2013 at 5:36 am

    Hi there! I know this is kinda off topic but I’d figured I’d ask.
    Would you be interested in trading links or maybe guest writing a blog article or vice-versa?

    My blog covers a lot of the same subjects as yours and I feel we could greatly benefit from each other.
    If you’re interested feel free to shoot me an e-mail. I look forward to hearing from you!
    Awesome blog by the way!

     
  5. Restless Hands

    November 12, 2013 at 8:35 pm

    I’d add Easter Seals to the list of helpful organizations at they end. Their approach to autism isn’t perfect, but it’s pretty darn good. And they are a national organization with pretty wide name recognition.

     
    • soulvy

      August 12, 2014 at 3:34 am

      I second that. As an adult autistic who never had support through the system (my parents and later my husband provided it), I had to come into finding help as an adult. There were almost no organizations who work with adult autistics unless they were receiving services as a child. Easter Seals has been my life-line. They are able to facilitate the help I need and letting me determine what I need. They get me out to socialize — I love going places with other autistics. I am an advocate for Easter Seals work in the AIM program. I would not be living independently, for the first time in my entire life, without Easter Seals.

       
  6. Cherie

    November 15, 2013 at 7:48 am

    Sorry, I don’t see anything wrong with Autism Speaks here. What you’ve written here is ridiculous. It’s like criticizing the Cancer Foundation for trying to find a cure for cancer! Autism is not normal, it’s an illness, I’m sorry you’re have trouble coming to terms with that. Thank goodness for organisations like Autism Speaks who actually care enough to research the causes of this horrible illness that destroys people’s lives and the lives of their families.

     
    • thecaffeinatedautistic

      November 15, 2013 at 11:36 am

      No, I’m sorry that you’re so bigoted against actual autistic people that you don’t care at all how we feel. How would you feel if someone said the way that your brain works is something that makes you a burden, that breaks apart your family, that paints you as a tragedy? Because that’s exactly what Autism Speaks does. Autism isn’t an illness. It’s a disability, yes. But don’t you dare compare autism to cancer. That is insulting to both autistic people, who want real help and real research that helps us live our lives, and to people diagnosed with cancer who fight for their lives day in and day out. Please don’t dare to tell me that I have trouble accepting my own disability. I am disabled. It is exhausting and frustrating at times. It’s also given me a view of the world that is different from what most Neurotypical folks experience. I like my brain (mostly), and for you to claim that autism is a horrible illness (which its not. It doesn’t even hit the criteria of being an illness in the first place) just proves you know very little about what it’s like to be autistic.

      My family isn’t destroyed by my autism or my kids’ autism. If autism haa destroyed your life, maybe you need to rethink the way you treat the autistic people in your life. Maybe you need a new perspective.

       
    • Shalvia Verdell

      November 21, 2013 at 6:08 pm

      Excuse me. Person with high functioning Asperger’s Syndrome here. Autism is NOT an illness. Autism is not something that can be cured. It’s something people have to live with their whole lives. Trying to rid someone of that is not possible and it’s not helpful either. Also being Autistic is not a bad thing either. It doesn’t destroy anyone. It’s who they are and you or anyone trying to change them–now THAT is NOT NORMAL!! Keep your ignorance and hatred to yourself.

       
    • Kathleen Shimp (@KathleenShimp)

      January 6, 2014 at 12:53 am

      Cherie- To some extent, you might as well be saying a person born with only one hand has a “horrible illness”. Or a blind person has a “horrible illness”. Neither of those things would actually “destroy” a person’s life or family, even if they do surely cause difficulties.

      And neither of these things is any more a cancer than autism is.

      Fatal, terminal illnesses end life. I’m not sure I’d even term that “destroying” it, though. Some folks out there are pretty spiritual about it toward the end.

      Disabilities are not cancer. They do not directly kill you. And these days, even cancer may not end your life. Yeah, thanks to research. But cancer actually is cancer. Cancer can cause a disability. But again, the disability itself- still is not cancer.

      Apples and oranges. So many people confusing the two.

       
    • Mary

      April 2, 2014 at 6:48 pm

      Are you kidding me? Autism is not an illness. It is a neurobiological disorder. Autism does not have to destroy lives and the lives of their families. As a parent of a son on the autism spectrum, I can tell you that with proper support and early intervention individuals with autism can have lives that are meaningful. They may not meet your definition of “normal,” but I can tell you that my son is one of the most forgiving, gentle and loving people I have ever met. I find your comment to be ridiculous.

       
    • Rona

      April 2, 2014 at 8:22 pm

      Actually Cherie get your facts right…it is NOT an illness or disease…do some research for heaven’s sake woman!

       
    • Sophie

      April 4, 2014 at 12:25 am

      Cherie, you are so misinformed. And from what I can tell from this post, also uneducated. Autism alters the way someone lives, yes. But cancer is a disease that kills you. You would have to be pretty ignorant to compare the two.
      There’s nothing wrong with someone having a different opinion as mine, but at least be smart enough to back it up with the correct facts. And to not be so insensitive.

       
    • alysmith91

      June 17, 2014 at 11:44 pm

      Sorry to burst your bubble Cherie, I’m not ill.Your comparison to cancer, however, is the only ridiculous thing here. Cancer is a real actual disease that sadly still claims lives today. So yes we should pump funding into finding a cure for all types of the disease. Autism, on the other hand,is not a illness or disease, it is genetic neurological condition or disorder, if you may. This means,it’s part of me and who I am as a person, it’s given me my intelligence and my love of reading and technology (I’ve been able to read since before I was three). My Asperger’s is just one part of me, I don’t let it define me. Now I won’t lie and say it’s all been plain sailing, it hasn’t. I’ve had my meltdowns, tantrums, sensory issues, you name it, I’ve been there and worn the t-shirt. But you know what? I got through it (and without medication I might add) with support of my wonderful family and my teachers and SNA’s.. I was one of the lucky ones to be diagnosed early and have supports put in from the very beginning.
      Fast forward to today, I still have a few issues (i.e. social awkwardness, interacting with peers, anxiety), but fortunately they don’t really hinder me anymore. I have a small, but close circle of friends and also I am pursing a degree in Computer Science at the Dublin Institute of Technology in Ireland. I did so well in my studies beforehand, that I was able to skip straight into 2nd year of the programme. Not too shabby for someone who is supposedly “ill” as you put it. Unfortunately, Cherie you have been misled by an corporate “charity” that only uses the money that you give to push their bigoted, ableist, electric shock treatment promoting agenda. So if you really want to help us, donate to ASAN, local charities or better still the Autism Society of America (I am assuming that you are from the States, which I am not). That’s my two cents.

       
    • Jenny

      June 18, 2014 at 9:35 pm

      Cherie,
      Autism is NOT a “horrible illness”. You are sick in the head if you truly believe that. There are some wonderful results, even if quirky, that come out of autistics. Do you have any children that are autistic? Would you appreciate someone calling your child a product of a “horrible illness”? I am not like some parents who think my son needs a cure. What he needs is acceptance and understanding. Your comment is toxic and vile, not to mention its a harmful addition to the stigma that already exists for anyone with a mental disability.

       
    • Sheogorath

      June 22, 2014 at 1:36 am

      Cherie, I’m not disabled because I’m Autistic, I’m disabled because people like you don’t think that reasonable accomodations for Autistic people are necessary because Autism Speaks will find a cure. Well, I’m sorry, but any cure will come too late for me. I’m already out of the womb.

       
  7. anonymous

    March 9, 2014 at 10:24 pm

    I am a really good friend with mark and Eva Woodsmall. they are running he autism walk in California. they have a son who is my best friend and he’s severely autistic. they wouldn’t relate to autism speaks if all you’re saying is true. they care about their son and about the stereotypes people make about peple who are autisttic

     
    • thecaffeinatedautistic

      March 9, 2014 at 10:26 pm

      A lot of people are ignorant and uninformed. Doesn’t change the fact that they are in support of an organization that is horrendous.

       
      • ASDMOM

        June 19, 2014 at 2:31 am

        Very interesting reading indeed. As a mother of a 10yr old ASD child, his Grandma is interested in putting a charity for Autism in her Obituary (I know, sounds morbid…) when she passes away…We live in Ontario, Canada, but anything Canadian based would be preferential….I just assumed that we would put in to donate to Austism Speaks, but I see that will not be happening now!!
        If you have any ideas of a Canadian based organization, or a Canadian chapter of one of the U.S. ones, could you post it? Thanks

         
      • thecaffeinatedautistic

        June 19, 2014 at 2:40 am

        I have a few Canadian friends so yes, I will ask! Thank you for your comment and I totally understand – I don’t think that sounds morbid, really.

         
  8. motherofautisticson

    March 26, 2014 at 3:27 pm

    The only reason why it would so to say destroy a persons life and/or families is to those that are not strong enough to help and support and try to understand that person. families have to be strong as one and you marry a person to face on the world with whatever it brings!! these children. and adults just want love and support and understanding!

     
  9. cakeleevannila

    March 30, 2014 at 8:07 pm

    Reblogged this on cakelee vannila.

     
  10. cakeleevannila

    March 30, 2014 at 8:25 pm

    Our house is full of neurodiversity. We have four ppl w asd’s. The whole idea of ‘curing’ autism makes me sick. The idea that a child was born good then the bad autism monster came along and stole the perfect baby leaving this mess of a child is beyond offensive!!! My loved ones brains are different, changing that changes who they are on every level. And my family’s awesome, as is. Ppl like to think I would feel quite different if my children were a bit less functioning, this is nonsense. Just bc a person can speak for not mean they can communicate, just bc a person refuses to stim in public does not mean they don’t want to. In many areas my kids w aspergers have a higher wall to get over than my son who has moderate autism. Ppl also don’t realize the amount of work our entire family has to put in to appear to be neurotypical, it is a constant internal battle. I wish parents and educators and clerks at convince does could stop expecting the ppl w asd’s to put in all the work, why are we not learning to speak autistic? Why is the non-autistic brain considered better?

     
  11. Autism Care

    March 31, 2014 at 1:13 am

    Every child with autism has different needs and therefore each programs should be customized with different strategies and interventions.

     
    • thecaffeinatedautistic

      March 31, 2014 at 3:09 am

      Yes, of course. This is a thing we should do for all children..

       
  12. Inanna

    April 1, 2014 at 6:54 pm

    The parent handbook for Autism Speaks, published in 2012, divides parent reactions to a child with autism along sex/gender lines. It says that women who have a child with autism are worried about keeping up with the housework and the impact on other children. At the same time, it lists only fathers as being affected with stress at work due to having a child with autism, and only fathers are interested in the child’s long term and financial future. It felt like 1952 in that parent handbook.

     
    • thecaffeinatedautistic

      April 1, 2014 at 7:07 pm

      Their attitudes haven’t even begun to reach what should be acceptable in the 21st century.

       
  13. Sarah L'Heureux

    April 1, 2014 at 9:51 pm

    It is such a relief to read this article. Autism Speaks is an enormous fund-raising facade that shields a political machine whose mission is anything but helping people with autism. All those million$ funding genetic research! A specific marker for autism will not be found and not for lack of trying.
    How convenient it would be if such a gene were isolated and testing in utero made available. Then most autistic people would cease to be born at all, in a kind of specific genocide just like that which the Down Syndrome population has suffered. I love my son with autism and wouldn’t change a hair on his head.

     
  14. Dominic

    April 2, 2014 at 5:45 pm

    This is just dum there is nothin wrong with autism speaks alest there are other people out there trying to help instead if saying things that are wrong with it instead if complaining why don’t you try and help instead

     
    • thecaffeinatedautistic

      April 2, 2014 at 8:40 pm

      Hey Dominic – I am Autistic. I do plenty to help within the autistic community. Autism Speaks is doing very little to help. If you look, I’ve listed a bunch of groups that actually ARE helping autistic people at the bottom of the post.

      Heaven forbid I should complain about a group that steals from autistic people, that erases us and refuses to ever listen to autistic people at all, who includes all autistic people in its fear mongering numbers but who calls those of us who are verbal too high functioning to count and those of us who cannot speak verbally /live on our own incapable of really being able to understand our own experiences.

       
    • Sheogorath

      June 22, 2014 at 1:48 am

      At least there are other people out there trying to help [...]
      Yes, there are. Unfortunately, Autism Speaks don’t seem to have any of them in positions of power. Why not try AutCom instead?

       
  15. Jane

    April 2, 2014 at 11:29 pm

    If Autism Speaks is such a corrupt charity, then why is it so successful? Why is it the biggest and most well-known charity? You’d think that if it was so horrible, more people would know about it’s corruptness.

     
    • thecaffeinatedautistic

      April 3, 2014 at 12:09 am

      Because people are more willing to listen to the parents of autistic kids than autistic people. Because people do not think autistic people deserve a voice in decisions that affect our lives. Autism Speaks has painted a picture of Autism as a tragedy and a condition that makes it impossible for autistic people to live a happy, productive life.

      As for why it’s so successful? Marketing. A huge amount of their budget goes to marketing. You can make anything, even eugenics, seem palatable with the right marketing.

       
    • ghost (@ghostfeels)

      April 3, 2014 at 1:42 am

      God, that’s just an awful thing to say. This article is trying to inform people about its corruptness! You are acting as a barrier to that, and wondering why people don’t know!

       
    • Tina

      April 4, 2014 at 7:14 pm

      Fear

       
  16. mymanyspecialways

    April 3, 2014 at 7:16 pm

    Reblogging this today on my facebook to share with family and friends. I love your article and great site!!

     
  17. Brandy Nightingale

    April 5, 2014 at 4:30 am

    **THANK YOU** :^) Sharing.

     
  18. Nope

    May 17, 2014 at 1:49 am

    Autistic people should be prevented from being born if its severe, the parents should atleast know what could happen, maybe its time to grow the fuck up and realize its actually a disorder not something that makes a kid “special”

     
    • thecaffeinatedautistic

      May 17, 2014 at 2:24 am

      Yes, autism is a disability. Have you ever spent even a moment thinking about what autistic people might want and need rather than siding with parents and other people who think that autism is the worst thing that could have ever happened to them (to them, of course. Nothing to do with the autistic individual, right?). Saying that a group of people shouldn’t be born is eugenics, plain and simple. There are plenty of autistic people who are “severe”, as you put it. But you’ve never even considered that, have you?

      I am Autistic. I know that it’s a disability. It’s something that permeates every facet of my existence. I would like to be the one to make decisions about my own life and the future of people like me. Trust me, we know our brains better than you all do.

       
    • Sheogorath

      June 22, 2014 at 1:55 am

      Autistic people should be prevented from being born if its severe.
      I’m sorry, but what f###ing planet do you come from? When I was born, I was the most placid baby, never cried for anything including nappy changes and feeds. My mother was worried. When I got to the age of two and still couldn’t speak while avoiding others as much as possible, including my cousins, she got scared. Since I showed all the signs of having an intellectual disability until I was put in front of keyboard at age twelve, I should have been aborted according to your unfounded hypothesis. Thank the Lord that no genetic test can predict the severity of anything.

       
  19. Abeeha

    May 23, 2014 at 2:53 pm

    I have been wondering for the longest time why people have been against this organization. I knew they weren’t doing any good but never knew any details. Thank you for posting this.

    I would just like to respectfully point out your lack of person first language. You seem to be advocating that a person is not defined by something (a person is not autism in this case) therefore it’s important that you use phrases like “person with autism” as opposed to “autistic person.” This way, you’re always putting the person ahead of their needs.

     
    • thecaffeinatedautistic

      May 23, 2014 at 3:04 pm

      The autistic community, as a whole, prefers to be called “autistic” rather than to be called people with autism. A friend of mine writes about it much more succinctly than I have here : http://yesthattoo.blogspot.com/p/dont-call-me-person-with-autism.html?m=1

      Please don’t condescend to me as though I’m unfamiliar on the concept. I have sat in psychology and education classes that teach person first language is the only acceptable choice. I am Autistic and I have made a deliberate choice to refer to myself that way, because no, I am not a person who just happens to have autism. Autism is as much an integral part of who I am and how I experience the world as my gender, my skin color, my sexuality. If you wouldn’t call a woman a “person with womanness” then you shouldn’t call autistic people “people with autism”. The Deaf and Blind community feels similar about identity first vs person first language, but not every person does. If a person prefers person first language, then by all means, use it FOR THEM. But don’t use it as the default for autistic people.

       
  20. George

    May 29, 2014 at 4:04 am

    WOW THE HATE AND ANGER BY THE “ENLIGHTENED” PEOPLE WHO KNOW MORE BECAUSE THE HAVE LIVED IT DOES NOTHING FOR YOUR “CAUSE”. I WAS/AM IGNORANT AND WAS DOING RESEARCH TO LEARN AND YOUR NEGATIVE ATTITUDES TO ANYTHING NOT IN ALIGNMENT WITH YOUR ” BELIEF”, NAME CALLING, HATRED AND PURE UGLINESS DESTROYS YOUR POINT OF VIEW AND CAUSE. ALL I HAVE LEARNED IS THOSE AGAINST AUTISM SPEAKS ARE NEGATIVE ANGRY PEOPLE WHO CLAIM TO BE ENLIGHTENED AND YET DO NOTHING TO EDUCATE OTHERS, BUT INSTEAD CALL NAMES AND DEGRADE OTHERS IN THE NAME OF THEIR OWN DISABILITY.
    CONGRATULATIONS ON SHOWING YOUR OWN UGLINESS.

     
    • thecaffeinatedautistic

      May 29, 2014 at 5:16 am

      I’m not sorry that I’m angry that there is an organization out there (one of many, really) that would rather I don’t exist. That calls lives like mine “tragic”. Who don’t care about autistic people but about using us as a device so their corporation can pull in a huge profit, while giving less than 5% to the people they claim to help. I’m not sorry that I’m not nice. You don’t need to like me or my methods but you’re going to sit here and shame me because I don’t fit your standards of behavior and I’m (understandably) angry? I’m angry at Autism Speaks because their ideas contribute to the death of fellow autistic people. They contribute to the ableism that exists in the medical establishment and the school system, where I almost always bring a friend, spouse or family member because once they find out I’m autistic, I’m not a whole person anymore. Who refuse to talk to me 99% of the time and when I’m conversing about my children to the people educating them, initially ask to speak to my husband, presumably because he doesn’t have as many communication problems but also because they see him as the more competent parent because he’s neurotypical (ish). And heaven forbid I get angry at people who are complicit in supporting an organization that actively harms us. Heaven forbid I step on your toes and make you feel one ounce of the discomfort I feel on a daily basis. But hey, don’t change your worldview at all because you don’t like how “negative” I am. That makes logical sense. You know, my kids are only 7 and 8 and even they know that is pretty petty behavior. Perhaps you should you know, not be so offended by people getting angry at people who talk about murdering their autistic kid in front of said kid or about the people who support those people. Ever hear of righteous indignation? It’s mostly a religious term but it definitely applies here.

      No one is forcing you to read. So feel free to just not. Continue in your ignorance . I’ll continue to educate, both here and elsewhere.

       
    • alysmith91

      June 17, 2014 at 11:53 pm

      Congratulations on learning how to use the Caps Lock.

       
  21. kell82

    May 29, 2014 at 4:51 pm

    Just a random question….why are parents of children with autism so angry all of the time and why are they so quick to point fingers?? I understand that dealing with this disability is…well…difficult, draining, life changing, etc., but when is the line drawn? When do you learn to just “accept” the condition and move on for your sake and for your childs’ sake? Ready for the lynch mob comments….and go!

     
    • kell82

      May 29, 2014 at 4:58 pm

      But, what good does it do for your children when you are angry at the world? What good does it do for your children for you to insult other people’s intelligence? What is your anger really teaching them? My mother always said “if you can’t say anything nice, then don’t say anything at all”.

       
  22. david

    June 12, 2014 at 1:26 pm

    THE GUY STATING AUTISTICS BEING UPSET AT AUTISM SPEAKS FOR WANTING THEM NOT TO EXIST ARE ANGRY IGNORANT GEORGE WASN’T IT ? TWO WORDS CAPS LOCK (think your button is stuck)
    didn’t anyone teach you shouting is rude dear boy !
    ALSO… SORRY ON SEc.. thats better its infectious that caps lock thing sorry i have OCD as well as autism forgive me :) but george you are wrong to be so quick to judge autistics say if you found a organisation wished to remove you from the gene pool due to your caps lock issue or because you had characteristics they felt were a burden on society ,, how would you feel George … may i hazard a guess ? ANGRY GEorge you would be angry despite all the difficulties autism brings and three of my children have it,,, it does not need to be wiped out this is because it brings so much joy to creates amazing creative people, when i walk in nature the intensity of that connection the beauty i see that i know no neuro typical sees or feels it the way i do,, my god its amazing, how 95% of us autistics are peace loving would never hurt anyone ( NT figures per population would kill for that percentage ) how we bring new perspectives in science the arts, that would not exist without our unique perspective on all the things we do… you dont get it george or neither does autism speaks,,,, we are a blessing to this world and the biggest barrier to us managing better in your (normal ) world is how we are failed by society we are failed let down not accepted and not understood the only real problem autistics have is IGNORANCE ! with understanding skys the limit…..

     
  23. SF

    June 18, 2014 at 3:33 am

    I see a lot of allegations and unsubstantiated statistics, but no actual proof (other than hearsay, opinion and blog postings, which are irrelevant.) With all due respect, if you want to legitimize your claims, surely you can find something more substantial than writing statistics with no citations as to where you came up with those numbers.

     
    • thecaffeinatedautistic

      June 18, 2014 at 3:51 am

      The statistics? Come from Autism Speaks’ financial reports, available on their website. Take two seconds to follow the links in said charts

       
  24. Kristina S

    June 18, 2014 at 8:10 am

    PEOPLE. FIRST. LANGUAGE. Why is this so difficult to understands? “AUTISTICS”?! I am against Autism Speaks but I am more against your douchebag way of describing HUMAN BEINGS.

     
    • thecaffeinatedautistic

      June 18, 2014 at 6:27 pm

      Autistic people prefer identity first language. Do some research. Heaven forbid I describe a community that I belong to with the words that we as a community choose to describe ourselves.

       
  25. Jonathan Ditka

    June 18, 2014 at 9:10 pm

    Can you please start using people-first language? Put the person BEFORE the disability. You would never say “my cancerous friend”; you’d say “my friend with cancer”. And this is the first place I have ever heard of people with autism being referred to as “autistics”. It’s demeaning.

     
    • thecaffeinatedautistic

      June 18, 2014 at 11:05 pm

      No. I am not going to call autistic people “people with autism” becsude non autistic people have a problem with it. The autistic community has overwhelmingly preferred identity first language. If you are an autistic person who prefers something else, I will respect that. But otherwise, no. Do you call women “people with womanness”? No that sounds silly. There is nothing dehumanizing about being called autistic unless you think being autistic is less than human.

       
    • Sheogorath

      June 22, 2014 at 2:02 am

      You would never say “my cancerous friend”; you’d say “my friend with cancer”.
      That’s because cancer is a disease for which the only desirable outcome is a cure, Autism is not. If you would rather call someone a woman rather than ‘a person with femaleness’, then you should also use identity-first language with us. I am not a person with a removable component, I am an Autistic person.

       
  26. Someone

    June 18, 2014 at 9:32 pm

    How great it is for you to be high functioning. If you don’t want to change the way you are, that’s completely fine, but I have a cousin who is severely autistic. He screams and cries, beats his head against walls, tables, floors, all because he is in pain. He doesn’t speak. He barely eats. He needs a cure. Not all autistic persons like you are high functioning. I’m not for killing anyone just because they have a disability, but for persons like my cousin who are extremely unhappy I’d love for there to be some kind of treatment. Autism Speaks may be a crappy charity, but don’t say that just because you don’t want to change that everyone doesn’t want to.

     
    • thecaffeinatedautistic

      June 18, 2014 at 11:33 pm

      Autistic people tend to not like the idea of high and low functioning labels because they don’t accurately depict what our lives are like. What you’ve described of your cousin leads me to believe that perhaps there are comorbid conditions that often come with autism that are present in him. Autism isn’t generally physical pain. Perhaps his environment is too loud and overwhelming. Perhaps he has a GI issue that needs to be treated. Autistic people don’t dislike people getting treatment for legitimate conditions that cause us pain. We understand that. But “fixing” our brains is pretty much frowned upon. And even if that was something we were aiming toward, Autism Speaks isn’t listening to autistic people and has such a small percentage going to family services that they aren’t helping us at all.

       
  27. Jay

    June 18, 2014 at 10:43 pm

    I love reading sites like this. Personally I know families that where helped by this organization. And to the uneducated running this site. You’re taking stuff out of context to fuel what ever the real story is for your grudge. Its unfortunate you pick one of the few good groups to do it against.

     
    • thecaffeinatedautistic

      June 18, 2014 at 11:39 pm

      Autism Speaks is not a “good group”, no matter how you spin it. A good group does not ignore the people they’re trying to help. It’s funny that you think I’m uneducated when I’ve done years of research into this organization. Explain how that is taking things out of context.

       
  28. Hussain Azhaan Mohamed Hussain

    June 19, 2014 at 9:19 am

    Reblogged this on H.A.M.H.

     
  29. Jonathan Walmsley

    June 19, 2014 at 9:30 pm

    I just don’t understand why neurotypical people would comment on blog post from an autistic person and accuse you of referring to yourself wrong. I can’t think of anything more arrogant. It would be like a white person commenting on a black person’s blog, and telling the writer that they are not allowed to refer to themselves as black, but instead should refer to them-self as a person with blackness. It’s asinine, and I’m sorry you have to constantly defend yourself against people who really should mind their own business. Keep up the good work!

     
  30. justafeelin

    June 19, 2014 at 11:37 pm

    Reblogged this on Melina Esparza and commented:
    Wow, I had no idea. I hope more people become aware of this.

     
  31. WrongerMcDonger

    June 22, 2014 at 2:09 am

    What the hell AutismSpeaks.
    The sad part about people is that if one incident happens to one celebrity, and (s)he or a loved one has autism and is affected in a completely different way than the “disorder” itself, it goes viral and people who are too dumb/lazy to figure out they have almost nothing to do with eachother will believe.
    People are hard wired to think a person is right if they themselves don’t know and the person is “trustworthy”.
    There is nothing wrong with autism, and without it I personally believe we would be hundreds of years less advanced than we are now.
    The part about it ruining a marriage doesn’t even make sense, for example, say the groom has autism, he will almost certainly be dedicated enough to help make the marriage happen.
    This is almost like AutismSpeaks = Nazis while autistic people = The Jews, Gypsies, and other hated people.
    I have autism and it’s wonderful, I wanna make an hour long rant about this subject and tell them how stupid they are.
    It’s like they think that not fitting in is a disorder and I had to go to completely unessasecary counseling because of that and I feel like it made me an even greater outlier of the groups.
    Autistic people are kind of like people who are naturally good at logic, love exerting their brain and imagining, but bad at social skills. Other people who are better at other tasks are also the tasks more geared so their brain is better with social things. The reason (I think) that people with autism don’t fit in well is that society is highly illogical and unpredictable, making harder for people like me.

     
  32. melissaautisticfields

    September 9, 2014 at 3:55 am

    Reblogged this on Melissa Fields, Autist and commented:
    I am against Autism Speaks for so many reasons. As an Autistic adult, i am tired of being stigmatized by groups like them, and told i am wrong, damaged, etc.

     

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