Don't support AUTISM SPEAKS: Let Autistics Speak for Themselves!

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Why Autism Speaks is No Good for Autistics

Don't support AUTISM SPEAKS: Let Autistics Speak for Themselves!


Okay, so you want to donate to Autistic Charities. Good for you!

Autism Speaks isn't one of them.

I could just tell you about how every single Autistic individual I have ever spoken to seems to hate the "charity" with a passion. But if you want proof...

Much of their "education" on Autism is deliberately demonizing Autism / Asperger's Syndrome, which as you can imagine is the last thing ANYONE Autistic actually needs. Their most famous video, Autism Every Day, even features a mother who admits in front of her autistic daughter that she had contemplated carrying out a murder-suicide because of her child's Autism.

(Ironically, only a few days after the video's release, one mother did just that to her own daughter. Check out "Karen McCarron" below.)

There are no Autistic members in any controlling position of Autism Speaks, only parents and other related family members. As you can imagine, the divide between "Being Autistic" and "Putting Up with someone else's Autism" is a BIG difference, given how social slights and other communication issues are part and parcel of Autistic behavior, even though it doesn't have to be. As a result, with such lopsided representation, they can hardly presume to speak "for" Autism in any sense.

There exists a very vocal contingent of Autistics online who are appalled with Autism Speaks right down to the choice of logo (They don't appreciate being called "Puzzles", to be honest.) In fact, even MENTIONING Autism Speaks will spark flame wars in Autistic Communities, backed up by plenty of evidence from shunning at Autism fundraisers and conventions to the sheer lack of support they provide current Autistics in favor of long-term "research" that allows them to splurge on PR stunts and lavish corporate expenditures without having to show any proof of the progress they're making with all that money, while true Autistic Charities are choked for funds because it all goes to Autism Speaks.

Fortunately, there ARE alternative charities which would have a far better impact. The Autistic Self-Advocacy Network is the best I can recommend to you. Please consider them as your charity to support instead of "Autism Speaks".

I assure you, Autistics prefer to speak for themselves.

Think Autism Speaks has Changed? 

Think again - New Video, "I Am Autism", is More of the Same!

Earlier this year, Autism Speaks asked for several family-submitted clips of autistic individuals and their families for a video designed to "shine a spotlight" on Autism.

... And then here's what they did with the clips.

Would YOU want yourself or your children associated with this kind of propaganda? Would you have submitted clips to these people if you knew they were going to do THIS with them?
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What do you Think? 

(Relax, you don't need an account to voice an opinion! Just type it into the box and let it fly!)

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Autism Speaks is Evil! Autistics are People too!

SpectrumMom w/Spectrum Kids. says:

This is appalling! Why cannot these parents/family members see that autism is apart of what makes their child, themselves. There is no cure, no magic pill, no evil, no illness. Get it??
Autism Speaks, please DON'T speak for me or my family!

Posted November 09, 2009

patty says:

http://www.nashobalearninggroup.org/events.htm

Spread the word to boycott any funding to this center. Nothing but an Autism Speaks advertisement.

Posted October 06, 2009

A Parent says:

Autism Speaks thinks of my children as inhuman monsters. They are not.
Autism Speaks thinks my children are trapped behind some horrible soul-sucking disorder. They are not.
Autism Speaks thinks that my family is miserable, lonely, and should be embarrassed to have autism and be around autism. We are not.
Autism Speaks thinks that autism is only negative, only painful, and should be eliminated at any cost. It is not.
Autism Speaks does NOT speak for anyone in my family.

Posted September 23, 2009

K says:

My boyfriend has autism and i love him to bits! He doesn't 'suffer' from Autism he lives with autism and there are so many good things that come from it, he never lies, he doesn't care what any other people think of him and he doesn't judge people...he is perfect exactly how he is

Posted August 30, 2009

12-year-old-Aspie says:

Room; clock (tick,tick,tick) You'll ask the questions, I'll answer(if I can).
You say you're piecing me together...that I'm puzzling, that I need to help you

I'll help you with your 'puzzle' if you remember one thing,
I'm not just one of your
'pieces'
In her words I
'just don't fit'
I'm not a puzzle I'm a person. How can I be a piece if I don't fit.

My life is no puzzle, though my mind is filled with dominos. One little
push
and it all starts to fall down
one by one

You tell me to help you. I'll help you with your 'puzzle' if you remember one thing, I'm not just one of your
'pieces'
In her words I
'just don't fit'
I'm not a puzzle I'm a person. How can I be a piece if I don't fit.
People aren't puzzles they're games of russian roulette,
you never know what you'll get.
The pieces just don't fit
(don't know what you'll get).
I'm not just one of your puzzles
(I'm no piece)
I'll leave your puzzles and crawl back to my domino affects
(that you just don't get)
I'm not a puzzle I'm a person.
Leave me (I'm no piece)
Leave me to my dominos. I don't care about your damned puzzles. I'm no piece!

Posted July 26, 2009

snaphead says:

Hey guys. You can talk more about this at :
http://www.dailyargue.com/argument/Dont_support_AUTISM_SPEAKS_Let_Autistics_Speak_for_Themselves-10.html

Registration is not required..

Posted May 30, 2009

diane says:

we just participated in a walk to benefit Autism Speaks due to their commitment to research in the field. It pains me to know that there is characterization of them as evil. This implies an intent to do damage when possibly the intent is to inform. Maybe it is the brutal truth that can be frightening. i don't know but I do plan to do more research before I walk again.

Posted April 11, 2009

annalaurabrown says:

As a PDD individual and someone who has worked for a library who supports autistics. I have no personal experience with them but I heard quite a bit of negative things about them.

Posted March 10, 2009

Josh G says:

I'm a 14 year old with Asperger's and I am proud of who I am.

I am making a site to protest against Autism Speaks and if they try to take it down I will fight them.

The worst thing they can do is write DMCA takedown notice to the host and if they do, I'll contact the host and tell them that there is no copyright infringement on my site and they are welcome to check.

If the site does get taken down, I'll set a new one up with another host.

THEY CANNOT SILENCE ME! IF MORE PEOPLE DO WHAT I'M DOING, AUTISM SPEAKS WILL BE SCREWED!

Just look at what Anonymous is doing to Scientology! If enough of us help out, we will have the same effect on Autism Speaks!

Posted March 07, 2009

Anonymous says:

I think that people need to be aware of Autism but it is not a burden, people with Autism are just that, people. People think that just because they have Autism they are a burden and it is so horrible for parents to take care of them but the truth is that people with Autism can bring the most joy in the world, it's just that people need to be aware that Autism is out there and that the kids are not merely brats (they aren't brats at all). People with Autism are amazing in their own way.

Posted February 10, 2009

Gorbek says:

I think autism speakes is really going the wrong way with this, when was the last time normal person achieved anything otherthan "lol i ran, or swam, or climbed or just kicked a ball into a net alot and became famous" einstien, dyslexic,(sorry i dont know how to spell it)bill gates autistic and theres a whole other list out there of people i dont really know.

Posted December 19, 2008

EelKat says:

As an Aspergers, I can tell you outright that I really hate it when people start sticking pills at me and telling me if I would take them I'd be normal. You know what? I have no problem with who I am, I do not see any reason why I should change. I am different, yes. I know that, and have never denied it. I just want people to stop telling my to *be normal* or how nice it would be if I would *seek medical help*. I'd just like the whole pack of them to leave me alone... I don't need a bunch of Hitlers in my life telling me how to act, how to talk (which I don't and that pisses most people off), or anything else.

I esp don't like people who walk up to you and say: "Why don't you answer me? What are you retarded?" I really, really, REALLY hate that.

I'm afraid I can't really comment on Autism Speaks, because I'm not familiar with any of the autism orgs. I don't like to get involved in groups and such, because that means being around people and being out in public, both of which means there will be folks pestering me to talk and that'll lead to teasing, and I really don't want to deal with rude, cruel mouth, mean people anymore so I rarely leave the house anymore. People preach kindness and understanding and acceptance, but you'd be surprised how very few actually practice what they preach when they are forced to come face to face with someone like me.

Posted September 28, 2008

Anonymous says:

People wishing to hear a 13 year old boy's opinion of Autism Speaks only need listen to the podcast entitled "Special Feature Interview with Douglas Giesel and An Update Interview with Lewis Schofield"

The podcast is issued by Midnight In Chicago at www.mic.mypodcast.com

The boy has Asperger Syndrome and does mot believe Autism Speaks ought to speak for anyone. His comments come near the end of the podcast, but they are worth listening to and spreading.

Tell all whom you know about this podcast so that they know how negatively Autism Speaks affects people with autism.

Posted August 06, 2008

ivanova says:

i think that autismspeaks sucks and i am not supporting them. if poeple went to be different then ther should be nothing wrong with it. i have autistic friends and i think they are awsome and i support them. i to have asparger traits and i am tired of poeple trying to change me.

Posted July 24, 2008

Sharon says:

Well, what organization, oversight agency or fiscal accountability does Autism Speaks have to answer too?

Perhaps it might be effective to begin a concerted effort/protest in the state legislature where Autism Speaks resides!

If enough pressure were put on their state legislators to follow the money trail, as well as gaining PR interest in the local/regional/state press, perhaps something might blow up.

I enclose a link to a recent PR press release from Autism Speaks in which they present themselves as the 'largest autism advocacy group in the world'.

Where are they getting their numbers from...they used to send tons of unsolicited mail to my e-box...does that mean that they were counting all of those who didn't agree or request their solicitation? That's called slamming and somebody out there ought to catch them for that too.

Here's the link-

http://www.eurekalert.org/pub_releases/2008-05/as-asa050908.php

Sharon (aspie, wife of aspie, mom of aspie kids...wow are we ever a creative bunch!)

Posted July 14, 2008

Autie-Mom E says:

I remember visiting the website shortly after my daughter was dx'd. I remember one video in particular, the one of the mother who said she thought of driving off a bridge with her Autistic daughter. It was her "normal" daughter who prevented her from doing so. I remember thinking...what exactly are they trying to promote here?

Posted July 13, 2008

The_Homeopath says:

Having treated clients with Asperger's spectrum, I have never once heard a parent refer to their children as a burden.

Posted July 08, 2008

pahsophist says:

I think this is right in line with Autism Speaks' past behavior. But I hope that Zazzle verifies it was indeed AS that "requested" the shirt removal.

If what gadfly wrote is true, and AS is saying they never contacted Zazzle (and if they actually did), they're already trying to cover their tracks.

Zach needs to get a hardcopy of the original letter/email from Autism Speaks to Zazzle before it's destroyed.

Posted June 23, 2008

Jude says:

Looks like they found the cure right? Autism doesnt exist past the age of 18! People like me, at the age of 23, no longer need treatment because we are no longer children! How clever! [/sarcasm]

Posted June 22, 2008

Amanda says:

Steve, no one is demonizing parents. Of course it must be hard to have an autistic kid, especially when the kid is very low-functioning and doesn't communicate. But Autism Speaks encourages parents of autistic kids to think of their kids as having been stolen! That doesn't encourage the parent to start loving the kid for who he or she is.

Posted June 20, 2008

Think of the Children Parents! Those poor, pathetic Parents!

JigsawForte says:

@Angela:

You seem very frustrated in general, and I imagine your son is much the same way if he is causing you this much grief. Surely you understand that not all parents with Autistic children are exactly like yourself, the same way your son is not like every other Autistic child. I apologize if the statement that Autistic children are often harmed by the same people who claim to be helping them bothers you -- strangely, you seem to echo my sentiment more than you think, especially in pointing out the school system's treatment of your child.

... That said, please seek some form of additional assistance / a second opinion on your home environment and your current treatment for your son immediately. Autism does not make people "attack" other people and do horrible things to them. If your son is lashing out at his environment / family, there must be an irritant within the house that is causing him significant trauma. It could be a bad odor, it could be the lighting (especially if it's fluorescent lighting vs. incandescent), it could be the music or a particular high-pitched noise made by a device your daughter regularly uses...

These may seem like minor details, but for an Autistic person who is especially sensitive to certain stimuli, they can be torture.

Ask your son what it is about his environment / sister that bothers him, or if this is not possible, observe his behavior to see what things he actively tries to avoid or seek out -- even if these are not directly correlated to his behavior / attacks, you may be able to figure out which sensory inputs he responds to and alter his environments accordingly. Your son will be happier for it, and I imagine that will make you happier as well.

Posted July 28, 2009

Angela says:

wow. I really think you are being a bit tough on parents here. I myself am the parent of a wonderful bright son who happens to have Aspergers. I have no desire to change him and although I may make mistakes sometimes (as EVERY parent on EARTH makes because we are HUMAN too and ALL humans make mistakes) I DO think of my son first. Just because I want for him to have proper help in school because he was not functioning or learning and becoming EXTREMELY frustrated with teachers trying to force him to learn in a way he simply did not understand does NOT make me a demon, and just because my heart breaks FOR my son everytime he runs to his room and screams to me that he is lonely and just wishes he could know how to make friends does NOT make me a "poor pathetic parent!" It makes me a mother who LOVES her child with every fiber of her being and just wished that he didn't have to hurt! That is what you are seeing when you see parents so desperate. it isn't that they didn't get the child they wanted...it is that they LOVE their child and any GOOD parent who loves their child and sees them having any form of difficulty and ESPECIALLY any form of pain will be desperate to take that pain away from her child! How DARE you turn a parent's love and concern and quite frankly frustration...not just at a child who is having a meltdown and peeing on himself in the middle of walmart because some alarm went off, but also the frustration that a parent has to go through dealing with the finincial responsibilities, wondering how on earth they are going to be able to hold it all together FOR their child who needs them. How DARE you turn a parent's concern and LOVE for their children into something selfish and wicked! You should be ASHAMED of yourself! Yes, I am aware that because of so many people's ignorance that my SON is the one who bares the burden of people trying to speak for him...but how dare you act as though parent's aren't going through this as well!!!! 2 years ago my son who was only 7 at the time was placed in a MENTAL hospital via his own SCHOOL because his teacher kept trying to make him do work in a way he didn't understand, he had a HUGE meltdown, ended up at the ER where they sent him to the state mental hospital for one week. During that time we were only allowed to see him once and we honestly didn't know WHEN we would ever see our child again or what horrible things were being done to him. We had to hire an attorney just to get him out! Do you SERIOUSLY think for one second that we had NO emotional envolvment in that situation?!?!?! Do you not think we were FURIOUS over how he was treated and felt completely out of control and helpless?!?! Do you SERIOUSLY think that the event I just spoke of didn't effect US as PARENTS in ANY WAY AT ALL?!?! Well then...you are...INSANE!!! How dare you act like autism doesn't have an overwhelming effect on the parents...or how about my daughter who has had to deal with all sorts of horrible things that her brother has done to her BECAUSE of his autism?!? Do you think her life hasn't been directly effected?!
I can assure you of one thing...you CERTAINLY aren't going to gather as many supports for your organization as you would like simply because of how utterly narrow minded you obviously are and how horribly cruel your ridiculous statements are! Do you not ralize that when you put down innocent people and attack people with your words the way you have on here that you might be doing some damage to your own cause?!

Posted July 28, 2009

spirituality says:

I don't know the organisation 'autism speaks' well enough to know whether they are evil. The parents should get support in dealing with autistic children (and adults) - and wining may to some extent be part of THEIR healing process. After all - even if you love your kid, you would not have wanted it to turn out autistic.

It does sound like funding should be directed more to actual help than to research on featuses.

BTW: the non-verbal autistics ARE actually the majority. The smart asperger type is a minority amongst autistic people. Not saying they don't need help, just that - they don't represent autism.

Posted August 10, 2008

Steve says:

Demonizing parents is just as stupid as demonizing autistic people. Both of them suffer tremendously, and one side's suffering isn't less valid than the other's.

Posted June 20, 2008

 
view all 26 comments

Five Things Autism Speaks Must Do Before I'll Support Them 

(Like that'll ever happen.)

  1. Stop referring to Autism as a "horrible burden". Okay, we get it, you're mostly made up of pissed-off parents. Stop giving 'em what they want to hear and start telling them "Okay, so your kids are Autistic. Are you going to help them become all they can be regardless of whatever difficulties they have, or are you going to sit here and whine about it?"
  2. Drop the 'Cure or Nothing' Attitude. Among Autistics, there is a special name for this -- a curebie -- that is basically a slur against folk who think that you can magically "remove" the Autism and find a healthy, normal person underneath. It doesn't work that way. The autism spectrum is a behavorial and sensory amalgamation of traits and quirks, and to remove those and replace them with "Non-Autistic" traits and quirks just isn't going to happen. And even if it could, it would basically be brainwashing on the most horrific scale you could think of.
  3. Recognize that Autistics who are articulate, verbal, and intelligent need help too. Autism Speaks defines a very narrow band of autism; namely, the one where a child seems to have been replaced by a "little demon" who can't speak, can't function, and is doomed to life sweeping floors for a living. Yes, there is a name for the smart, savvy kind of Autistic; it's called Asperger's Syndrome. That doesn't mean they have it any easier, and it certainly doesn't mean they're the 'cured' kind of Autistic.
  4. Start supporting Autistics that need the funding. In today's health care crisis, Autism is not funded by any major insurance companies. All treatments at this point are untested, unfounded, and costing hundreds of thousands of dollars to provide one-on-one learning, personal assistants, equipment that can stand up to abuse, not to mention whatever various medications these parents are testing out. If the money Autism Speaks spent on research and dissecting dead brain tissue -- to try and find a neonatal test they could apply in order to "filter out" Autistic fetuses -- were spent cushioning the costs of all these treatments and expenses, families would be a whole lot better off for it.
  5. Quit threatening lawsuits against everyone who so much uses the name "Autism Speaks" to criticize you! Okay, really now: threatening legal action against Autistic people who you KNOW aren't as socially (let alone legally) savvy enough to stand up to you otherwise? What's up with that? The only other group I know of that reacts even close to the same way when their name is brought up is the Church of Scientology. Now who wants to be associated with a money-grubbing, closely-guarded organization who refuses to listen to Psychiatrists and allows Autistics to rot on the vine without any treatment? ... Wait, which group was I talking about again?

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Today's Autism-Related Article from Wikipedia 

Asperger syndrome is an autism spectrum disorder, and people with it therefore show significant difficulties in social interaction, along with restricted and repetitive patterns of behavior and interests. It differs from other autism spectrum disorders by its relative preservation of linguistic and cognitive development. Although not required for diagnosis, physical clumsiness and atypical use of language are frequently reported.

Asperger syndrome is also called 'Aspergers syndrome, Asperger (or Asperger's) disorder, or just Asperger's'; it is named after the Austrian pediatrician Hans Asperger who, in 1944, described children in his practice who lacked nonverbal communication skills, demonstrated limited empathy with their peers, and were physically clumsy. Fifty years later, it was standardized as a diagnosis, but many questions remain about aspects of the disorder. For example, there is lingering doubt about whether it is distinct from high-functioning autism (HFA); partly because of this, its prevalence is not firmly established. The exact cause is unknown, although research supports the likelihood of a genetic basis; brain imaging techniques have not identified a clear common pathology.

There is no single treatment, and the effectiveness of particular interventions is supported by only limited data. Intervention is aimed at improving symptoms and function. The mainstay of management is behavioral therapy, focusing on specific deficits to address poor communication skills, obsessive or repetitive routines, and physical clumsiness. Most individuals improve over time, but difficulties with communication, social adjustment and independent living continue into adulthood. Some researchers and people with Aspergers have advocated a shift in attitudes toward the view that it is a difference, rather than a disability that must be treated or cured.

read the rest of the Wikipedia article

Outraged?

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Books on Autism from Amazon!  

(Note -- I'm not always sure which books on Autism are the best to provide. if you think any of the books listed below are offensive to Autistics, speak up so I can replace them with a more worthy book!)
Autism is a World - CNN

Autism is a World - CNN

Amazon Price: $29.95 (as of 12/08/2009) Buy Now

1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders

1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders

by: Veronica Zysk, Ellen Notbohm

Amazon Price: $16.47 (as of 12/08/2009) Buy Now

Autism Spectrum Disorders: The Complete Guide to Understanding Autism, Asperger's Syndrome, Pervasive Developmental Disorder, and Other ASDs

Autism Spectrum Disorders: The Complete Guide to Understanding Autism, Asperger's Syndrome, Pervasive Developmental Disorder, and Other ASDs

by: Chantal Sicile-Kira

Amazon Price: $10.37 (as of 12/08/2009) Buy Now

What People are Saying About Autism Speaks Right Now 

Tapped into the Blogosphere? Check out what people are saying about Autism Speaks right now!
Ornaments for “our” cause « The Official Walk Now for Autism ...
Their custom ornament designer enables you to upload your favorite photo to some really groovy templates, and presto: your ornament is ready for order. When you purchase, 10% of the proceeds goes to Autism Speaks. ...
Autism Speaks Hypocrites - Autism Politics, Activism, and Media ...
Autism Speaks recently announced on their website that due to the poor economy they have to "postpone" grant making and giving for 2009. Despite having hauled in a reported $68 million in funds last year, they claim to have fallen upon ...
Comet's Corner: Autism Speaks - It's a Living
Autism Speaks recently announced on their website that due to the poor economy they have to "postpone" grant making and giving for 2009. Yes, this charity that hauled in a reported $68 million in funds last year has fallen on hard times ...
The Official Autism Speaks Hatred Society
What are you accusing me of doing everything I say Autism Speaks is saying? Are you accusing me of making broad generalizations, using hyperbole as a marketing and fundraising strategy, and a threat to neurodiversity? ...
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  • Reply
    kitty222 kitty222 Sep 12, 2009 @ 4:50 pm
    Hi, good Lens...I haven't visited Autism-speaks for years because it was all about the people who live with people with autism and how crummy their lives were, without ever once mentioning how the actual autistics felt. At least, it was last time I visited. Besides, I don't really think you can wave a magic wand and "cure" somebody with autism. If somebody actually develops a "cure," I'm sure it will be a highly complex, highly expensive, and probably even a highly risky one.
  • Reply
    JigsawForte JigsawForte Jul 29, 2009 @ 6:07 pm | in reply to Angela
    If you'd like to continue this discussion, I would appreciate you at least keeping it in the same section of the page so other readers can follow along.

    If you are truly dedicated to stating your opinion, you are more than welcome to make your own Squidoo account and start your own lens and I will be more than happy to link to your page from mine as an appropriate counterpoint and resource for other parents and caretakers of Autistic children.
  • Reply
    Angela Angela Jul 29, 2009 @ 10:24 am
    JigsawForte:

    Actually you are incorrect in your assumtions of my child. It is i8n fact the sensory issues that goes along with his autism that causes him to react violently when touched, especially when he is already upset. I am NOT echoing your point...you in fact are echoing MINE. You are absolutely correct. NOt all autistic people are the same not do they have the same feelings. Not every autistic person agrees with you. There actually ARE other autistic people who WANT a cure. It's the same as in the deaf community. Some people do not want to be cured from their deafness because that is all they have ever known so they reject the trasnplants but there are other deaf people who DO want to be cured of it. Just because it is something YOu don't want doesn't mean you have the right to speak on EVERY autistic person's behalf. Just as I don't have that right. I DO hope they find a cure for autism. For the people who have it and want it.
  • Reply
    SemperFidelis SemperFidelis Apr 23, 2009 @ 7:42 am
    Blessed by a SquidAngel today!
    www.squidoo.com/squid-angel
    ~ Colleen :o)
  • Reply
    WeddingZazzle WeddingZazzle Mar 11, 2009 @ 3:41 pm
    Thanks for the info. Would love for you to review our Autism-101 lense at Autism 101
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