What’s Wrong With Autism Speaks?

When my daughter was diagnosed, we heard about Autism Speaks.  Their message supported everything else we were reading and hearing about autism, so I didn’t spend much time thinking about what they were saying or who they were involved with or even what they were doing with all the money they received.  In fact, we gave money to them during those early years.  When friends and family asked who they should donate money to, I encouraged them to give to Autism Speaks.

“Autism Speaks has a long and continued pattern of exclusion of Autistic voices from its work on autism. As an organization without a single Autistic person on its board of directors, Autism Speaks is the last group our nation’s leaders should be entrusting with the creation of a “national plan to address autism”. ~ ASAN (Autistic Self Advocacy Network)

“No reasonable person would dare suggest that an organization comprised entirely of men represents women’s interests or that an organization led entirely by white people represents the interests of people of color, yet the same standard evidently does not apply to disability organizations despite the existence of many cross-disability and autism-specific organizations led by actually disabled people.” ~ Lydia Brown,  Autistic Hoya

I didn’t know.

“Only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services.” ~ ASAN, Before you Donate to Autism Speaks..

“Their slogan is “Autism Speaks to Washington.” It is neither “autism” nor Autistics who are doing the speaking, though.” ~ Paula Durbin-Westby

I didn’t know.

Autism Speaks has aligned themselves with the Judge Rotenberg Center, (read Autistic Hoya’s:  An Unholy Alliance) a center that uses electric shock as an “aversive”.   The Judge Rotenberg Center continues to accept “students” despite this video footage showing a young man being tortured.

For more about the Judge Rotenberg Center read Autistic Hoya’s post with dozens of links ‘here‘.

Bob and Suzanne Wright, whose grandson is Autistic created Autism Speaks in 2005.  Since then Autism Speaks has become one of the most influential autism organizations in the world.  What Autism Speaks does and says is often the first thing parents and people reading about autism hear.

“If three million children in America one day went missing – what would we as a country do?

If three million children in America one morning fell gravely ill – what would we as a country do?

We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.

We’d leave no stone unturned.

Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.”  ~ Suzanne Wright’s  A Call to Action

The problem with this kind of rhetoric is that it is not a “call to action” it is a call to terror.   Terror that our children are “missing,” or have been “stolen,” or that if we are not careful any of our children will be “taken away” from us.  It furthers the misconception about autism and likens it to a predator, a kidnapper who will steal our children from our loving arms.

This is not awareness, this is propaganda.

Autism Speaks is responsible for a number of public service announcements which show screaming children and their exhausted parents who talk to the camera about how hard it is to have an autistic child while those same children are present.  I might have been one of those parents not so long ago.  In fact I allowed a camera crew to come to our home several years ago and film us.  The short film showed us sitting on our couch talking about our daughter as she sat beside me, (not realizing my daughter understood everything that I said, this is yet another of my many regrets) intercut with clips, I provided them with, of my daughter in full melt down.  I have since asked that our interview and all clips of my daughter be removed and I am grateful they respected my wishes.   The parents in the Autism Speaks videos are not so fortunate.

So many of us have supported organizations we thought were working toward positive change.  We believed they were helping us, our children and Autistic people.  We thought they had our children’s best interests in mind.  We believed they were doing good, only to find we were wrong.

I didn’t know.  Now I do.

Related Articles by Autistic people speaking out about Autism Speaks:

John Elder Robison – I Resign My Roles at Autism Speaks
Wikipedia – Talk: Autism Speaks/Controversy links
Golden Hearted Rose – So, What’s the Problem with Autism Speaks?
Autistics Speak  – Wrong Planet assist Autism Speaks in Silencing Autistic for Satire
The Caffeinated Autistic – Why I am Against Autism Speaks
Evil Autie – This is Autism Speaks
One Quarter Mama: Why I don’t like Autism Speaks
Initiative Action

96 responses to “What’s Wrong With Autism Speaks?

  1. The hardest part of this blog post to read was about the Judge Roth..Center but I have had really good interactions with Autism Speaks. They introduced me to my book’s illustrator.

    I can see the controversy about funding and 4% is very low but I thought Autism Speaks’ agenda was for research and not for family services so I have always let that slide.

    As an individual on the Autism Spectrum, who has had a lot of awesome communication with them, I find it hard to believe that they have bad intentions. They have jumped to help me with certain things.

    Funding for services is critical naturally. I feel like I have no way of getting help with some things I struggle with but I don’t agree that they are a big blue monster. I think priorities for them seem to be research on vaccines and doing lots of math..lol…and I definitely think that it should be more like 80% services and 20% research since so many children already have ASD. It seems they are looking for a cure? (Which I know is extremely controversial)

    But I worry about bashing them. I think they are great at promoting awareness. Progaganda seems to be the way our government does this. Scare the daylights out of people to get their attention.

    I don’t know..I simply don’t know…

    • Gretchen – I’m so glad your interactions have been positive. I know of others who also have been happy with their interactions and I think many of the people who work at Autism Speaks believe in the organization’s good intentions.
      As a parent (and what I’m about to say doesn’t even begin to cover my feelings about the Judge Rotenberg Center) I was so worried and then frightened and these worries and fears led me down a dark and risky path of seeking treatments for my daughter that could have done her great harm. This talk about autism as a separate entity, as though it is this dark and dangerous force that is causing my child untold suffering is not remotely helpful and causes much misunderstanding in how people then view my daughter and interact with her.

      When we have gone to war, when we, as a society have segregated a portion of the population, when a group of people are discriminated against, these same tactics are employed and they are employed because they work. So while it’s good that they helped you specifically, there are many more who are being actively harmed by their rhetoric. The reason the Judge Rotenberg Center remains open is, at least in part, because of this dehumanizing rhetoric.

      • It’s all very sad news to me. I really believe that some have good intentions even if the company as a whole does not do what they claim to do. I wish there was a way that Autism Speaks could see that we need those services more than any cure…I am actually somewhat afraid of what said “cure” would do to my brain…

        But if it is evident to so many that their priorities are on the wrong path, why do people still do the walks? Why do so many give to them? To find a cure? I wrote a post about Cure Vs. No Cure recently on my blog and I realize that its sort of a separate issue.

        But if their goal is to WIPE OUT people with Autism that is very wrong. If they are uneducated in the fact that services for those with severe autism (forget me for a second) are so critical and needed right now…why don’t we start a walk to raise money for a hospital to provide those services?

        Oh boy, I feel as though I am still so confused and anxious about this right now. I have always been a defender of them but maybe I have been naaiive to think that an organization such as AS with such strong power would put money before the people they serve.

        • I think a lot of people do the walks and raise money for Autism Speaks because they aren’t well informed. For most parents, their child is diagnosed with autism, they’re given a brochure about Autism Speaks and they’re so overwhelmed with coping with their child’s needs and learning what they can about autism, they don’t think or have the energy/time to investigate the organization that’s been recommended to them by the system. Autism Speaks has a massive advertising budget and can afford to put themselves in front of the parents of newly diagnosed kids in overwhelming numbers.

          Also, I’ve read a lot stories by parents who are first went unquestioningly along with the idea of a cure and huge amounts of therapy, etc. only to later realize how harmful that approach was to their child and completely do a 180 degree turn away from cures and demonizing autism.

          I have an idea of what you’re feeling. When I first read about people being against Autism Speaks I was confused too. The organization didn’t seem that bad from looking at their website and seeing their fundraising walks, etc. It was only after i really started looking at how they talk about autism and where the money they raise goes that I realized why people are so vehemently opposed to them. And now I find myself among those who feel that way too.

  2. I guess as an afterthought, is what does ‘call to action’ mean to them? If it means raise money for research – they are doing that. I guess what I am saying that has AS ever actually said that they are looking to provide services or do they stand for research? I guess I have some reading to do.

    If their goal is research then I can see why they wouldn’t necessarily have any of us with ASD on their board but when it comes to services I would think it would be vital.

    • Well, yes, for the most part they stand for research. And that wouldn’t necessarily be a big problem, depending on what kind of research, for what purposes, they were funding. If they were seeking out the input and contributions of autistic people to determine what kind of research we think would most help us, if they had a lot of autistic people on their board of directors, in leadership and advisory positions to give significant input on these things, that would be great.

      But that’s not what they’re doing. They now have zero autistic people in any leadership or advisory capacity. They do not seek out input into what kind of research would be helpful to us. And they fund research with the stated goal of preventing and eliminating autism. They claim to advocate for the needs of people on the spectrum, but they do that without meaningful input from us.

      As for what proportion of their income they spend on services vs. research or advocacy, their IRS 990 forms are available on their website.

      • I guess I just try to see the positive but I am really really sad to hear all of this. I’m literally in tears because honestly I have always known they had “haters” but figured that most orgs do and just assumed that somehow…the critics were misguided…but I guess I was wrong.

  3. I was also cautiously supportive of Autism Speaks. I thought they had been sensationalist some in the past, but if it’s to draw awareness, I had a little “ends justify the means” mentality. Then I read about AS on Diary of a Mom here:

    http://adiaryofamom.wordpress.com/2013/11/12/no-more-a-letter-to-suzanne-wright/

    and that really brought me into the light. I was remiss in my duty to familiarize myself with Autism Speaks before supporting them, but no longer.

    One of the things that really got me was the “I Am Autism” campaign launched by Autism Speaks. It had lovely gems such as “abetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain.” It’s clear to me now that AS is about sensationalism, NOT giving a voice to parents and autistics.

    I’m with you, I didn’t know. I responded on my blog yesterday: My Son Is Not Lost.

    http://dmitrylaughs.wordpress.com/2013/11/12/my-son-is-not-lost/

  4. Would you mind adding my post as well? http://www.onequartermama.ca/2013/10/why-i-dont-like-autism-speaks.html
    As well as our peaceful protest activity here: http://wayshelter.com/Toolbox/InitiativeAction/Hop_n_Snack.htm
    Autism Speaks threw us lemons and we’re making lemonade.

  5. Hi Gretchen
    I think I can understand your confusion. Some people who work for A$ locally are very nice. But they never recognize our diversity when they are campaigning nationally or on tv. And they have no problem using dehumanizing language about us.
    You are right that their focus is cure but even they know this is not happening. So they moved to eugenics.
    You are wrong that they do not advertise services. They use this to raise money. Think about it: why would families organize teams for walks to pay for scientists instead of returning as services? That’s families’ main need.
    The fact that they support torture should make you run away from them fast.
    If you still need services we can try to help you or direct you to a healthier place.

    • I would love info on where I could find help. I have Aspergers but I am independently living and married. It doesn’t mean its easy. We struggle week to week with money issues and my coping skills with work are not even close to up to par. I am currently employed but now on a leave, not for AS, but I see that it has presented problems before and maybe more so when I go back. I don’t know what to do.

      I wish they did offer more services for everyone on the Spectrum. Financially, I have never once felt like I was steady. I applied for SSDI but I doubt Aspergers is going to be enough and yet I have worked so many jobs and failed and failed and failed agaiin.

      I didn’t know they advertise services…that is sad…I wish there was some sort of justification because the folks I have spoken to at AS were SO nice and friendly and kept saying “Let me know if I can help” so I just felt the need to defend at least them even if the org as a whole is corrupt.

      • Not sure where you are located, but do you have an actual diagnosis on paper? With that, you can get therapy from a psychologist or OT. Again, not sure where you are (those things are covered by insurance where I am). If not, you can also see a life coach or employment coach – they can help give you tips on how to cope with daily work issues, as well as organization and planning skills. The point of most therapies is to get you to a point where you learn how to prevent things from getting worse and how to work with your strengths and weaknesses. You can contact me through Twitter or my blog if you’d like more tips. I work full time, but I get help from therapy to deal and I’ve done a lot of job jumping around in my day. With some help and skills, you can manage.

        • Well ironically, the dr who said he believed I had Aspergers submitted it as OCD to my insurance but later on “Autistic Disorder” is there and it is all over my medical paperwork as well. Not sure why the initial Dr. wrote OCD. Maybe they get better services?

          • yes, that might be the case. If it works and you are able to get some services because of it, take it even if it’s not the direct cause of your problems because all those things can be tailored once you get your foot in the door. Or speak with the doctor who diagnosed you – they may have a clearer idea of what would work.

      • I sympathize with not being financially stable. I work, too, but the nature of my work is really erratic and unpredictable.

        Here’s a thought…do you have a regular doctor, or a clinic you go to for medical care? Sometimes community health clinics or women’s clinics have case managers who can help you figure out if you’re eligible for things like food stamps or other social services.

        • I feel like I have somewhat taken over the comments here…feel free to email me at authorleary@gmail.com. Sorry Ariane!

          • Gretchen – on the contrary, so glad you are talking about this. I cannot believe you are the only person who is wondering where to go for help. All of this is very, very helpful. So happy this conversation is taking place as the more people make suggestions the more I am learning too, as are others who are reading this! So THANK YOU!

            • I am just trying to cope and understand I guess.

              I think I am blessed to be independent and married. I wish that didn’t mean continuous marriage counselling and private counselling as I misunderstand almost everything…

              I think people underestimate what people with ASD are capable of even with severe Autism. I personally feel like Aspergers have had some benefits (eg- added to the intensity of my devotion to help others and intensity of my poetry) but to have so few friends and to struggle so much with working a simple job..to struggle with sensory issues constantly..to struggle with misunderstandings..its purely exhausting

          • I emailed you! Just want you to know you are not alone and your experience is not unique to us. By talking about what works and what doesn’t can help others go in the direction that works for them.

        • I don'[t even know how to find a job coach…I don’t even know where to begin. My blog is pretty much an open book and its obvious that I need help to strengthen my social and work skills but no one ever even mentions it to me…just “do your best, that’s all you can do” is usually what I get

          • You might actually check the website of your local Unemployment office–a lot of times they have job coaching or job skills sessions available. You could also ask a librarian at your local public library branch to help you find local employment/job coaching resources.

  6. Ariane thank you for posting this and for posting everything you do. John Elder Robison just announced he left autism speaks. I think this is a historic day in a way. Your leadership in Autism issues has been tremendous , sharing your journey day after day is making such a great difference. Thank you for all you do.

  7. I was tipped off to A$ right from the start, when Katie Wright broke ranks with her parents Bob and Suzanne because they disagreed with her pursuit of biomedical interventions. I had been doing biomed and diet with my son for several years at that point, and knew for a fact that it was helping him. The Wrights were not interested in respecting or supporting what was important to their own daughter, much less to me. I knew then, in 2005, that when Autism Speaks, it didn’t speak for me. Nothing that has transpired since has changed my mind. I also think it’s ironic that their big fundraising activity — that Walk — is an activity that is not tolerated by my ASD son. Who’s it for, then?

  8. I believe that there is two camps in the autism community. Those that see the children as sick and broken and those that see the children as different. I think that is going to be the battle. I don’t believe that there is a cure but finding ways to help autistic people be apart of our society

    • I am in full agreement here…as an indiv. with ASD, I can see both sides..I feel like the more severe the autism the more towards the broken it becomes BUT that is not verified or true in all cases…But there is definitely a huge divide

  9. Yes, tell it to the world Ariane! They need to know and not be blinded… my friend also wrote a great post this week about this: http://smallbutkindamighty.com/2013/11/12/many-people-mad-autism-speaks-right-now/

  10. I am the parent of a child that has been diagnosed with autism. While I do not believe that Autism Speaks appropriately utilizes their resources, I do believe this “call for action” has more to do with ACTION in places where there has been very little or none. For example, we lived in the state of Texas when our two year old child was diagnosed. The state of Texas’ early childhood intervention providers offered us four hours a month of parent coaching. THAT was the end of the services that were offered. We implored them to provide ABA. They are an “information state, not a therapy state” was the response that we kept hearing each time we pushed for more services. Finally, we had to pursue private ABA services which weren’t covered by our insurance, and then we had to petition our health insurance to help cover our costs. MONTHS later, after spending approximately $2000 a month in ABA services we were able to get the minimum from our insurance in the state of Texas. Autism Speaks was a phenomenal resource in helping us advocate for our child. We did our research, figured out where the best services were, sold our house, moved 1500 miles and were able to receive ABA and speech and bussing to and from his current preschool setting. His progress has been nothing short of phenomenal. Texas’ lack of appropriate resources and services for the autistic community were incomprehensible. The call for action is specifically a call for a national plan for providing the appropriate services for the individuals that are affected by autism, throughout their lives. This includes insurance coverage that should not vary from state to state. This includes data driven strategies such as ABA and ST and OT as needed. This includes early intervention models that follow a federal mandate so that every child, no matter their families income, location, or education can receive the services that they need. *steps off soap box* :) Thank you for this article. It really does cause one to pause, for a variety of reasons and look at the whole picture. As a mother I can honestly say that autism affects my life on a daily and constant basis. However, I do not wish to change the extraordinary young man that my son is becoming. He’s on his own journey, and it’s spectacular to be a part of it. I can not assume that every parent feels the same, nor would I expect everyone to be as accepting of this situation as I have become. Perhaps my perspective would be entirely different if my child’s struggles were more profound.

    • “He’s on his own journey, and it’s spectacular to be a part of it.” – well, his “own journey” should be his own journey, not you trying to force him to be “normal”. ABA is abuse.

  11. Pingback: My Son is Not Lost | Dmitry Laughs

  12. Pingback: Listen (An Open Letter to Autism Speaks) | Raven's Wing Poetry

  13. Pingback: Autism Speaks: The Last Straw | spellitaut

  14. When my then 5 yo was diagnosed 2 years ago, The ONLY information given to me (by the major research university where he was diagnosed) was a huge binder from Autism Speaks. When I read through it, I felt paralyzed, patronized and filled with dread. Now I’m glad I felt paralyzed, because I didn’t do a single thing they claimed to be absolutely essential to do IMMEDIATELY unless I wanted my child to be permanently ruined (40 hours of therapy per week, for example). Pretty quickly I found Rachel Cohen-Rottenberg’s Autism and Empathy site, and from there it was a quick leap to discover a treasure trove of blogs by autistic people. The Autism Speaks binder was then unceremoniously dumped into the recycling. I’m so grateful to the autistic community for writing, for the wake up call they give to us ignorant parents, and for calling out Autism Speaks for the harmful org they are.

    • When my daughter was diagnosed Autism Speaks had not come into being yet… instead we were told about DAN doctors and given Catherine Maurice’s book “Let me hear your voice”. I’m debating whether either scenario was better…

  15. When my Mini V was evaluated, it was through the Early Intervention program, so it wasn’t a medical diagnosis but an educational label he was given. His medical diagnosis came later.

    I knew there was something different about him from birth though, he was so much more challenging than any of my five children before him, so I knew what wasn’t ‘normal’ in an infant. He was about two years old when what seemed to be ‘something wrong with him’ was given shape and thought in our minds; autism. We used a few online assessment check lists to see if he had any ‘red flags’ that would recommend evaluation. He had 7 out of ten. Probably had all ten, but there were some that he didn’t do then that he does do now, at least, we didn’t recognize them then.

    It wasn’t until he was two and a half that I was able to find where to take him for evaluation (he didn’t have a regular pediatrician, long story.) And they showed him initially to have significant developmental delays and accepted him to Early Intervention. At three he began SpEd Pre-school and that is when they began his ASD eval. It took three months to complete and I was informed in June 2010 that yes, he has an educational label of ASD. It wouldn’t be until a year later that he received a medical diagnosis of autistic disorder, and various language delays (which turned out to be not at all accurate).

    During the first year of having the ASD label, I had heard about Autism Speaks, and most of it was not positive. I didn’t know why though. When he was given his medical diagnosis, I was given a notebook filled with paperwork, things to read, that *Going to Holland vs. Italy* story… And recommendations to contact and become involved with Autism Speaks. I felt a knot in the pit of my stomach, but I was so desperate for some connection, some understanding, from anyone that I attended, just later that month, their 2011 Walk Now kick off even for our metro area. I did feel included. It was nice to see other parents there that ‘got it’ so I thought.

    At the actual walk, I noticed lots of young children that were clearly on the spectrum, no teens, other than those very severely disabled and no adults at all. Nobody was protesting the walk, but someone should have been. It was loud, and it was all about money. There wasn’t anything there that I could use, because everything there required thousands of dollars to participate in and I didn’t even have money for a car. The cute talk, which was almost integral to all their publications, was a little nerve wracking for me. When I really thought about it, I realized, my son is who he is because of his autism. And one cannot be separated from the other, any more than salt can be removed from the ocean and it still be the ocean.

    Then I saw their videos and I was sickened. That isn’t how I saw my son. I never contemplated killing myself, and him when things were really challenging (and the challenge was always more financial than anything.) I didn’t want my son to change and once he had a means of communicating his needs (we taught him very easy signs, even making up some of our own) his meltdowns diminished, he smiled a lot more, and he was able to tell me no, or yes and eventually his words came out and I have heard him tell me he loves me with his words, even though he has been telling me all along with his special Mini V sniffies, and I got that so hearing the words was great, but it wasn’t something that I needed to hear to know my son loves me.

    Autism Speaks wants to take everything away from my son that makes him the special little boy that he is. I wouldn’t change him for the world. I can no longer support, nor condone, the actions of Autism Speaks. They don’t speak for me and they don’t speak for my son.

  16. Proof reading is my friend, when I actually do it. I am sorry about the spelling errors Ariane. I can’t edit it, I hope nothing is lost in translation. Very stressed right now and my dyslexia is in high gear.

    • Lara – I didn’t notice many typos, but did go in and correct the few I noticed! Thank you for writing this and sharing it here. It is good to see so many coming forward and protesting, as the more of us that do, the more they will need to reconsider their message.
      On a separate note, John Elder Robison resigned his role as advisor on their science board this morning!

      • Yes, good job, and his resignation letter is extremely well reasoned, in fact they could use all the points he raises as a list of things for a manifesto for change (in an ideal world anyway). I think people like JER should be the ones developing direction and policy for an organisation like that.

  17. Thank you for sharing this Ariane. The video clip made me feel…, words cannot describe it. And then, how they grabbed him for not taking his coat!? It Is unbelievable that anyone can defend that. There has to be an enormous level of detachment for anybody to be able to torture, watch, not empathise and consider it as something legal. I don’t live in America and we don’t have Autism Speaks, but the general view of autism at least used to be similar to their message which is so wrong on so many levels. We have to bridge detachment not the opposite!

    • This is a “center” that provokes behaviors so they can use electric shock and defends this practice by saying it is a key part of the person’s “treatment”. Lydia Brown has been writing about The Judge Rotenberg Center for a couple of years now, there have been countless protests, articles written, publicity etc and yet it remains open and perhaps just as shocking, parents continue to send their children there.

  18. Reblogged this on Must Read Articles and commented:
    Untuk masyarakat Indonesia mungkin hanya sedikit yang mengenal Autism Speak, sebuah lembaga yang katanya mendukung kepedulian terhadap autisme. Belakangan ini saya mendengar suara sumbang tentang Autism Speak, namun masih belum terlalu peduli karena ini terjadi disana, bukan di negara tercinta.

    Namun ketika pagi ini membaca salah satu blog yang sering saya baca, barulah saya merinding. Apa yang dijelaskan pada blog Emma’s Hope Book baru memberikan efek, karena dijelaskan disini bahwa Autism Speak berkerja sama dengan Judge Rotenberg Center. Pertama kali saya mendengar tentang Judge Rotenberg Center adalah ketika ada kasus pengaduan dari orangtua anak autis yang menitipkan anaknya disana, lalu mendapatkan bahwa anaknya di terapi dengan terapi kejut listrik, yang bukannya membuat kondisi anak mereka membaik tapi malahan jatuh memburuk.

    Saya tidak memahami alasan Autism Speak bekerja sama dengan lembaga Judge Rotenberg Center tersebut, namun setuju dengan pendapat banyak orang di US sana: Autism Speak bukan lagi lembaga yang mendukung kepedulian pada penyandang autisme.

    Please read this blog.

  19. I was dumbfolded to hear JE Robison was on their science board.
    I am glad he left. I know for many parents AS has become the first ones to turn to in the US, but not only, but other organisations CAN Take that place.
    Parents do not need a propaganda machine AGAINST autism. They need people in touch with autism. Other parents, thoughtful, caring therapists that are not in it for the money. And most importantly, they need to talk to and liten to AUTISTICS! makes so much more sense. Autism speaks – not for me, not to me, certainly not for my autistic son.

  20. Janine M. Brooks

    As a graduate student and a parent of an adult-child with autism, I am concerned in a lot of ways. If we are going to focus on an organization, may I ask why? We should all be focused on the Americans with Disabilities Act in trying to get the guidelines for defining a developmentally-disabled individual revoked . . . so many states rely on it in weeding out their disabled that the profoundly-autistic adult individuals are often left out (receiving the shorter end of the stick).

    Autism Speaks has always indicated they were out there for research . . . not for families. They are searching for a “cure,” so such as arranging of services, outreach into communities, job supports, housing, etc. are not what they are going to be interested in supporting.

    Because I do not believe that their is a “cure” for autism, I do not support the fundraising actions of this organization . . . I do not participate in their walks, or contribute to them in other ways. Instead, I look for local organizations that work with autistic individuals (particularly adults) and funnel my monies and donations to them.

    That is all I have on this conversation.

    • Ms. Brooks, I confess I don’t entirely understand what you are getting at. It’s quite true that A$ has always held themselves out as being interested in finding a “cure” for autism. The problem is, they hold themselves out as the definitive autism organization, and if that were true, then their purview would be much wider. If they want to focus on some crackpot chase for a cure, that’s entirely the prerogative of their board. However, they must not then allege to speak for all autistics, because as obviously has been seen all over the internet, there are a lot of us who find that arrogant and hateful.

      We are also “focusing” on this “organization” because Autism $peaks keeps trying to speak for a constituent body – of which at least half despises and fears their message. I am autistic; I find Suzanne Wright’s recent piece disgusting and terrifying. Suzanne Wright and Autism Speaks want to keep babies like me from ever being born again. That’s a very lonely and frightening place to be in the world – knowing someone wishes you never existed. That is not hyperbole, either, before you accuse me of that. Autism Speaks wants a world in which “autism is a word from history.”

      I may be misunderstanding you, but you seem to be saying that the best way to handle this is simply to not give them our business – which is half true. Certainly the way to hit A$ is to hit them in the wallet. But I would feel disingenuous if I didn’t speak out and try to raise awareness of why what they are saying is wrong – it’s flat out cruel and irresponsible. It’s rhetoric and alarmist propaganda like this that gets autistic children and adults murdered. That is also not hyperbole – Issy Stapleton, Jaelen Edge, Alex Spourdalakis, et cetera. Et cetera. Et cetera.

      If I AM misunderstanding you, my apologies, but either way, there still seems to be a distressing number of people who don’t grasp why autistics feel so threatened by this organization. I hope I’ve made it clearer.

  21. The sad thing is truly that anyone could support them. Occasionally since I started blogging I have seen the fact I do view my autism as a disability used in some random argument about how this sort of hyperbole is okay.

    It never is okay. Even if this group believed what they say unless they employ the absolutely worst scientists on the planet cannot honestly have been the case for many, many years now, it is still not okay.

    That anyone gets anything useful from this group who I never so much as name on principal, is only a recent thing. For many years it ground away raising money to raise more money and only when enough people know who the heck they were to hold them accountable in any pesky way did they even add any service line to their budget. So it’s absolutely fantastic that some random Dad is grateful for 1000 dollars of funding or someone is happy about assistive technology but every ethical group on the planet knows a few things, the bulk of your money needs to be spent doing the work you say you want to do which for this one is developing a prenatal screening test.

    That’s horrific and eugenic and they would not be nearly as effective if people read through the documents they have to file to have charitable status. Somehow this warm fuzzy notion that they somehow do good has come to exist and realizing this was helpful they actually added some direct doing good. Very little when you pull it apart from salaries but okay.

    The second is (and they did eventually work this out) you better at least have token representation of the group you represent. Actually as of today they will be scrambling to find someone else tame enough to be that token or they will claim they try but as a group we all suck too much but in much more horrible terms.

    I am celebrating two things in the face of all this. They finally screwed up enough to make more previously supportive people question them and that against considerable odds some autistic people protested them rather directly today. When I say considerable odds I don’t mean being out in the rain, cold and wet and bright, but facing a much more massive and way better funded enemy they were there. This despicable group had the audacity to state their concern about this to the DC police chief and thank goodness that man knows his constitution. (This being the rare time when thing cited as rights are actually applicable)

    There are non-tragedy models for fundraising. None of us need anything useful enough to support Voldemort Speaks in any way, shape or form. If people think right now they do it’s okay. It’s sad but okay. I think we can do better.

    • I just love that you’ve coined, “Voldemort Speaks”… Looks like the internet is exploding with posts about VS! Yay!! Now I must go over to your post and like, share and comment…

      • It’s not my best one as I finally did just take an overly long comment and use it…

        My best work is often in the comments as changing somene’s mind who has commented is a more fierce inspiration most of the time than life in general.

  22. http://momembracingautism.blogspot.com/search?q=autism+speaks

    My bit of a complaint from 6 years ago about “Autism Speaks.” I hope the outrage being expressed about them now will help this organization to get rid of its fearmongering tactics and disrespect to those who are autistic!

  23. http://momembracingautism.blogspot.com/search?q=autism+speaks

    This was my complaint about Autism Speaks 6 years ago. Their ongoing fear-mongering tactics and disrespect to those who are autistic is astounding. I never recommend them to parents of children who are newly diagonosed!

  24. Pingback: A Guest Post From Richard Long… | Emma's Hope Book

  25. Reblogged this on Fibromyalgia Tips and commented:
    Really important post – please read.

  26. OMG- I just watched that horrifying video. I feel sick to my core. Autism Speaks must stop demonizing autism. It leads to the dehumanizing of humanity which is exactly what happened in the days of Hitler. This is so dangerous.

  27. Pingback: My Perspective On This Issue. | Life is Puzzling

  28. Pingback: Controversies Surround Autism Speaks | International Coalition for Autism and All Abilities

  29. Pingback: The Best Argument Against Autism Speaks: A Special Educator’s Perspective

  30. I definitely see everybody’s point and am in complete agreement–between this blog and another one that I view. However, what is everyone’s opinion on signing petitions that they start so that Congress and lawmakers improve services and support that is needed for our families? Because it seems like they are a powerful lobbying source. Are there other advocating lobbyists that are a better representation of the voice of hope out there? Just recently on this path and looking for answers and a clear view of the whole picture…Thanks.

    • Hi Nicole,
      ASAN (Autistic Self Advocacy Network) is an Autistic run non-profit that is doing great work. Ari Ne’eman was nominated in 2009 by President Obama to the National Council on Disability, “a federal agency charged with advising Congress and the President on disability policy issues. He was confirmed by the Senate in July 2010 and currently chairs the Council’s Entitlements Committee. Between 2010 and 2012, Ari chaired NCD’s Policy & Program Evaluation Committee. Ari worked to shut down the New York University Child Study Center’s “Ransom Notes” campaign and also led other successful disability community responses to offensive advertisements, including the response to the Autism Speaks “I am Autism” fundraising video. In his policy work, Ari has worked on a wide variety of disability rights related legislation relating to education, transition, employment, rights protection and other areas.”

  31. Pingback: The Responsibility of Representation | Walkin' on the edge

  32. I recall walking in their walks with my than 8/9 year old daughter Rebecca (2008-2009). Loud/noisy, overwhelming for both me and my family and always felt inwardly that though I believed in standing together with our ‘community’-Autistic, not community in the typical sense I just didnt feel it was the place for us and stopped walking with them. Also felt more should be provided to help those living with autism vs science for a cure. Though my daughter has her times that can make our whole household feel chaotic I feel her pain at those times. When she sings, smiles, laughs and it is within her life living with autism that she shines like an angel and I couldnt imagine her without autism. Like those famous stages of grieving in Kubler-Ross work making the road to acceptance does not mean giving up on a child but walking with them on their path and providing tools to helping them find their voices, not necessarily literal ones.

  33. Pingback: It must be time for a comic on Autism Speaks | (autism) comics by suburp

  34. Everyone is making very interesting points. In my experience, I was able to find resources and support at the resource fairs at the walks. We learned about and were able to later use Surfer Healing and music therapy. I plan to get around to using the special needs trust company I met. So I do feel that I got useful resources from the walk and from the website.

    My son participated in a study at UCLA that was funded by Autism Speaks. This study was for a play based therapy to develop spontaneous speech. It was 2x a week for 6 months and he did benefit from it. This type of research is definitely for services. I do not know not what amounts of funding for research is for learning affective treatments.

  35. Autism Speaks needs to shut up and listen. They are wasting millions of dollars of genetic research. They refuse to research the real cause. And they’ve KNOWN for a long time….what that is. They saw their grandson vaccine injured. And that is WHY Katie (their daughter) does not allow them to “speak” for her son. She is diligent in exposing TRUTH…..AS is NOT. They swoop in….light it up blue….take the green……and LEAVE.

  36. It’s amazing that so many people suspect a large organization is collectively hell-bent on doing the wrong thing (and, as Chandra suspects in full-paranoid mode, are *cognizant* of it and yet still ignore it — really, Chandra, “refuse to research the cause”, really?!!). It takes quite a distrust in the human spirit to actually believe it… It’s like believing Nazi Germany exists repeatedly and repeatedly — not saying that such horrible nation states do not occur, but to suspect that it occurs so easily/often is insulting to those that suffer from true forms of evil. It is like suspecting that the US govt is out to take advantage of you on a daily basis, or that the banks just want to see you suffer from not making your payments on time, or that any collection of people is intending any form organized malicious behavior and targeting you. People, wake up… think about the people who work at Autism Speaks. In most cases, people who are autistic have come into their lives and inspired them to work for the betterment of people suffering from autism. Yes, *suffering*. Unless you believe it’s not a disorder. Tell that to the mom who wakes up at 3am to hysterical laughter. Or to the child that injures herself on a daily basis. Or to the parents of children that are non-verbal (or minimally verbal) and do not have a sense of personal safety. Yes, it’s wonderful to be different. Who doesn’t want to be unique when you can do so in some carriage of normalcy? That part is fun. And yet I don’t think you really know what autism is really like. Because, you know what? The slapping oneself… the inability to eat yet a small selection of foods… the injuring of a caregiver (even a parent) severely… the tantrum-ing because one just needs to see that window open over and over and over and over and over… the more “severe” sides of autism are really not fun. And when you think of Suzanne Wright’s post… while I don’t agree with everything she says… at least think of that side of autism.

    • I am autistic, therefore I know better than you. Because I am autistic and you are not.

    • It’s amazing that so many people suspect a large organization is collectively hell-bent on doing the wrong thing .
      Actually, Autistic people don’t suspect that at all, we know it. Also, I don’t deny that Autism can be difficult for profoundly Autistic people, but that doesn’t mean it’s acceptable for Autism $peaks to advocate murdering them (indirectly or otherwise) just because “Think of the caregivers!”

  37. Pingback: Big Autism: Autism and Corporate Media | Angry Autie

  38. Just a tool, and nothing more – that’s all any autist can ever be in the Normals’ social dominance games. Face it – they like our ‘social retardation’ -it makes us USEFUL.
    Autism Speaks is all about those owning the Name becoming preeminent. That’s why only a few percent actually goes toward ‘doing something’. Remember, Normals are Really into ‘social rank’ (Ian Ford).

  39. Pingback: In the News – November 2013 | The PsychoJenic Archives

  40. Pingback: Too Big to Fail - Evil Autie

  41. Here’s what I believe is a good charity It’s called ASAN! It’s called the autism self advocatcy network! I don’t know much about it but I believe it dislikes autism speaks and a few anti autism speaks people are saying this charity is good!

    • Thanks so much Robyn! Yes, ASAN is a terrific organization and one I highly recommend. Please, if anyone is able to, donate to ASAN as they are run by and for Autistic people. They are doing wonderful work. This is their link for more information about what they are doing – http://autisticadvocacy.org
      Ari Ne’eman is ASAN’s president and co-founder. In 2009, President Obama nominated Ari to the National Council on Disability, a federal agency charged with advising Congress and the President on disability policy issues.

  42. ‘Neurotypical’ speaks of a given person’s mental wiring/instinctual functioning.
    ‘Normal’ speaks of the supposed superiority found in ‘the golden mean’ . Since most ‘normals’ behave as if they had memorized a vast collection of occult literature (the ‘rules’ of instinct resemble those of ceremonial magic; one of these rules is deceive everyone all of the time as to why you do anything) the true meaning of being in that small slice of humanity named as ‘the golden mean’ amounts to a self-chosen state of moral superiority.
    This is the ultimate foundation for much evil behavior; and, in the limit, results in that blessed state of small-g Godhood known as Psychopathy. Therefore, all persons who are ‘normal’ wish to become ‘the god'; and in the proceeds, bring forth their true and inward nature as Psychopaths

  43. Pingback: Moral Compass: Take #PosAutive Action and #BoycottAutismSpeaks « A Quiet Week In The House

  44. as a person with autism I have a list of words to describe this so called “organization”
    HORRENDOUS
    OUTRAGEOUS
    APPALING
    OFFENSIVE
    SICKENING
    DEMENTED
    TWISTED
    and just plain AWFUL!

  45. It is my understanding that talking to people on Capitol Hill that Autism Speaks is nothing more than an interest group for the pharmaceutical industry. Many of the officers of the organization had high powered jobs originally in the pharmaceutical and/or health diagnostics industry. They use autism as a front for money and legislation for pharmacological cures and treatments
    It is also my understanding that there are usually two or more interest groups for most major disorders. One is an interest group for the interest of the suffers themselves (Autism Resource Network, Autism Society of the US), and the other is usually an interest group for the pharmaceutical industry (Autism Speaks). Sadly, the one with the pharmaceutical interests are usually better known.

    about a minute ago · Like

  46. Dom Ambrozinni

    I found some of your details, particularly the part about money collected and spent by autism speaks to not only be wrong but to be horribly wrong.

  47. Dom you seemed to have misread what everyone is saying, That link does not breakdown where the money is going to, If 62% of their revenue is going to research and not to help families on the home front then the above comments are true, not “horribly wrong” Most people are stating that only about 4% goes back to families in the form of support, can you provide evidence that this is not true?

    My major concern with AS is that if they are a research oriented charity, then why is their material being given to families with newly diagnosed kids? The information families need is where to get support from not where to give money to especially considering the extra costs associated with raising Autistic kids.

  48. Pingback: YSK that Autism Speaks actively encourages the dehumanization and murder of Autistic kids, pays some of its people exorbitant amounts ($400,000+), has zero Autistic people on its board, and it generally hated by actual Autistic people. | Awesome Fact

  49. autism speaks does not speak for me. I knew this group was a fraud the first time I took a look at what they did. as an autistic I can do my own speaking on autism very well. most of what they are concerned with seems to be making the autistics behavior more acceptable to the parents, like trying to get them to make eye contact to make the PARENT feel better. making the eye contact isn’t going to do a thing to the autistic but make them uncomfortable and withdraw more. it wouldn’t matter how much eye contact I make I am still not going to be able to read body language or understand vocal cues. they only care about outward behavior. they care nothing about what goes on inside the mind of an autistic or bolstering autistics unique abilities.

  50. Pingback: MASS Discriminatory Policies and Involvement with Other Organizations | blaine herbst

  51. You might be interested in the following two things I wrote:
    An Autistic Speaks to the Community
    I Am CP
    Enjoy!

Leave a Comment

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

WordPress.com Logo

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

Twitter picture

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

Facebook photo

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

Google+ photo

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

Connecting to %s