Curious: What exactly do we hate about Autism Speaks?

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autism speaks doesnt speak for us: The ASAN does even if they dont do a great job of it.why do we waste our breathe bashing autism speaks,why not bash the asan and help them be a better organization.thats why ci was always bashing the asan,because he believes in them not because he is pro autism speaks

Ci actually bashed ASAN because they were a personal threat to what he believed would be an eventual cure.

I don't actually know anything about how ASAN is bad. Do you?

@there not bad,but they dont always address the right issue.and there somewhat ineficiant and disorganized.there heart is in the right place.id rather talk about them then all these endless posts on autism speaks

Dude... That voice sounds like Microsoft Sam... And it's voice scares me!
Plus, he sounds something like Dexter from Dexter's Laboratory.

Why do I not like Autism Speaks?

Other than the fact they have outdated, dangerous, and fallacious books in the "References" (loosely put) page and homage to the quack organization Defeat Autism Now! there as well (including Andrew Wakefield's place of employment in Texas during that time), it is far and away this and this. I never found out what the final outcome of this was. David Kirby was also behind the Keith Olbermann piece where he called Brian Deer one of his Worst People of that air date.

Say what you want about cures; Autism Speaks is an anti-vaccine organization. I never heard any retractions or otherwise out of them. They still have one of the founders of an anti-mercury organization on their board.

Autism Speaks... not my favorite group.

First is the "cure" thing they are trying to carry out. Autism can't be cured, because it isn't a disease. It scares the crap out of me what they were doing and saying about Autism. I'm glad my family isn't a part of that.

I don't see the point of dwelling on a cure if it is unattainable. Why can't they just accept us for who we are?

-They support prenatal testing on autistic fetuses. This could lead to most autistic babies being aborted by parents who don't understand the positive benefits of having autism. (Also, just to clarify, I am pro choice, but I don't like the idea of autism being wiped out all together. Autistic people have benefited society in many ways.
-They see autism as a disease, and something that needs "cured"
-They act as if autism is worse than aids and cancer.
-They sued an autistic blogger for making a T shirt that said "Autism speaks does not speak for me!"
-They support draconian "treatments"
-They act as if autistic kids have no souls.

I like to keep we smug UK residents on top of the news...
http://www.autistica.org.uk/news/index.php

Note, at the bottom of the page, their earliest news item tells us that the UK arm of Autism Speaks is "Autistica" http://preview.tinyurl.com/autistica. Evidently, the backlash when Autism Speaks tried to take over the UK forced them to change their name - to hide. It's not as if they changed... viz. the news item for 4th March, 2010 (which I had not read before):
All the news items seem to link to PDF files, which I find really annoying. However, I did bother to look at this one, and guess what were the first four research projects Autistica (formally known as Autism Speaks) decided to blow £300,000 on...

• "an Autism Research Register" - which sounds OK, provided it isn't used when they want to put us in camps.
• "... exploring whether variations in microRNAs ... might have a role to play in increasing risk for autism" - i.e. eugenics.
• "... the development of methods for early detection and diagnosis of autism ..." - which may be innocent.
• "... Fragile X syndrome, which produces autism-like symptoms ..." - more eugenics.

the autism everyday vido has been mentioned before but also the i am autism video should be. there is a parody of it posted before because it was so gosh darn awful they had to remove it from the net. there are transcripts though and they are absolutely vile.

http://aut.zone38.net/2009/09/23/autism ... a-new-low/

my favourite line is the faster than pediatric aids, diabetes and cancer combined part. it was the most dehumanising thing i have ever seen. the purpose of the video was not to enlighten it was to stigmatise, dehumanise and vilify the autist. the role of the parent or friend is to save the shell of a human from the dark despair that is our everyday existence and turn them into normal people because normal is good and who wouldnt want to be normal? we are spoken of by them as if we were a disease. their other ads have not been so good either. apparently your child has a greater chance of being D'xed with autism than being in a fatal car crash. again we are spoken of as some horrible tragedy that has befallen the world. we are spoken of as something detrimental to the well being of those who care for us, as if their lives would be better if we did not exist. also the name. autism speaks. it is not. it's the parents of autists speaking. we are not really given a voice. i think there is like one person on the spectrum on their board and they're a fairly recent addition. also for a charity organisation their board members get paid an awful lot. 6 digits. one of the board, in one year, earned over 600,000. apparently it was to help her relocate. plus the whole cure thing i think is wrong but going into why would make this post really long. suffice it to say that they want to eliminate autism in future generations. eugenics by any other name... some might argue that the organisation can be rehabilitated and that we can join in and change it from the inside but i think not. it is beyond repair and you dont make friends with your oppressor.

Their official policy on vaccines from their website:

http://www.autismspeaks.org/science/policy-statements/information-about-vaccines-and-autism

Last edited by aghogday on 23 Nov 2011, 7:46 pm, edited 1 time in total.

Yep. Autism Speaks has a clear policy statement there...

That all boils down to a round-about statement that Autism Speaks still funds studies to link vaccines to autism and will continue use vaccines as a scare tactic to frighten money out of parents.

A very important point that no one has mentioned thus far: Autism Speaks spends very little of its funds providing actual help to autistic people. As of 2008, only 4% of its non-overhead expenditures went towards family services, and very little of that went to adults. While I do not know the specific percentages for the years since 2008 (because the organization has made this information very difficult to obtain), their annual reports indicate no improvement in that regard. In fact, they may be spending even less on services, percentage-wise.

People are often convinced to donate to Autism Speaks on the premise that the money goes to help autistic children and families. Well, very little of that money goes towards direct services for people. Much more goes to research which has little practical relevance to our lives, such as genetics and causation research.

Previous posters have pointed to the organization's mushiness on the issue of vaccines, quite rightly. The organization is also disturbingly mushy--or silent--on other issues of significant importance. Namely, the Judge Rotenberg Center in Massachusetts, a "school" which delivers electric shocks daily to autistic children and others with disabilities.

Apparently the organization recently issued a statement talking about the Penn State scandal (using it as an opportunity for self-promotion and saying some frankly offensive things about autistic people in the process). While the situation at Penn State is obviously deserving of condemnation, I find it rather odd that the organization would address this--an issue not related directly to autism, as far as we know--but never once, in more than six years of existence, say anything at all about the JRC--except to provide a single link to a story which is relatively sympathetic to the founder, Matthew Israel.

These are not the kind of autism advocates we need. That such an organization has succeeded in monopolizing private charity funds for autism should be deeply troubling to anyone who cares about improving the lives of autistic people. My city alone raised $1.4 million for the organization last year--money that could have been put into providing services for the many autistic people in our local community, but is instead being used to fund scientists' research.

I don't see how anyone can not see how this is a problem.

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There are still a considerable number of parents that still believe this anti-vaccine stuff, that visit the Autism Speaks website. They are better off getting advice from a qualified physician about their concerns, than to go it their own, with their own potentially dangerous beliefs against vaccines.

I suppose Autism Speaks could have ignored those parents that continue to have those fears that visit their website, but the only advice they are going to get from a reputable physican is the consequences of not getting vaccinated outweighing any potential risk, as is the same advice given to any other parent that is concerned about vaccines. They are more likely to convince these parents than any direct statement that autism speaks could make on their website to address their specific concerns.

In every vaccination effort a minority of those that get vaccinated in the general population develop illness, because of some underlying cause that is not apparent in the rest of the population, whether it is a deficient immune system, or other physiological cause. This applies to autistic children as well as children that aren't autistic.

There have been reports on the AFF site from parents that are members there, that have children with autism, whose children did get sick after the vaccination, and the autistic symptoms were more pronounced.

They understand though that the autism was present before the illness, and that the illness didn't cause the autism, it just made the symptoms more pronounced. This is the research that is being supported by autism speaks; what medical reasons within these individuals have that may cause them to get sick after taking the vaccine.

There is a big difference in the disproven theory of vaccines causing autism and the potential that vaccines might trigger the onset of symptoms of Autism. If there is an underlying biological mechanism in the child that predisposes a minority of autistic children to be more succeptible to getting sick after being vaccinated, it is a worthwhile endeavor to try to find that underlying mechanism, just as researchers do in other groups of individuals that become ill after getting vaccinated.

All of this is addressing the realities of the situation; those parents with concerns do still exist and need appropriate advice that will lead them to a proper decision to have their children vaccinated, and there are some children with autism that do get sick after vaccinations, which is an issue that is worthy of concern, and further research.

I don't see either of these realities as ones to be ignored, if one is concerned about the children actually getting vaccinated, or the minority of children that do get sick after getting vaccinated.

All your points have critical value, except I'm not seeing any frankly offensive comments about autistics in the condemnation of Penn State Tragedy. I bolded the only association they made with autistic people; whether or not they are fulfilling what they say is their first and foremost concern is subject to debate; they are not suggesting they are speaking for any people on the spectrum that can speak for themselves; it seems like they were pretty careful about what they said here not to offend anyone. Not seeing anything about cures, autism is an epidemic that must be eradicated, or any of the type stuff that have offended people in the past.

They are talking on their own blog, so it's not like they are putting this stuff out on CNN; as far as self-promotion, they are singing to the choir here. They are attempting to get people that support them that read the blog to support a larger effort to help children beyond those that may struggle with Autism. Maybe I'm reading it wrong, but I'm not seeing any significant offensive statements in the letter about Autistics.

http://blog.autismspeaks.org/2011/11/20/op-ed-submission/

Last edited by aghogday on 23 Nov 2011, 10:18 pm, edited 1 time in total.

Their name. They do not speak for us, they want us gone! You might as well call the KKK "Catholics speak" or "Blacks Speak".

I find the part where they call autistic people "often unable to speak for themselves" offensive. First, not using verbal speech in typical ways does not equal not being able to speak up for yourself, ever. Many autistic people communicate through alternative means. They should not be cast off because their means of communication is atypical. Even for those who don't currently have a way to communicate in a way that is widely understood...they express themselves, as well. Maybe we're not doing a great job of interpreting them, but they are expressing themselves. By proclaiming themselves The Voice of autistic people, Autism Speaks does all autistic people a great harm.

Furthermore, a lot of us are speaking up! But our voices are too little heard by the larger society--due in no small part to the fact that groups like Autism Speaks have proclaimed themselves the voice of autism! While making very little effort to make sure that our voices our heard--when they're not actively suppressing them. So I found that statement pretty infuriating.