"Autism Speaks" Response to Autistic Input

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It's very true, the poll in itself is a loaded question of sorts. Autism Speaks are certainly not "evolving in a positive direction in response to input from the Autistic Community" - but that does not mean "there is no change that I can see".



It is just empty display in response to public pressure from within and without the Autism Community. All for show, like any changes on their website.

Reading some of this thread you could be forgiven for thinking that "Autism Speaks" were marginalised people to whom *we* owe some kind of inclusion in our affairs. When the truth is that we do not. They are not asking us for any kind of mandate, they have never tried to find out what we want and need, they are just in the process of trying to find ways to induce us to blindly rubberstamp them.

They set themselves up to speak for us without consultation, they have failed us every step of the way. We need to move on and leave them behind.

Ci, as someone who has spent much of this thread trying to inform me (incorrectly) of what *I* think, don't you think that is a tad hypocritical?

I think of it a little bit differently. They are an organization that is focused on research primary catering to parents of younger children. The approach by the pride movement has been way off since the beginning. Ever since their origination pride advocates who do not represent most people with autism commonly claim I think and believe things when I do not. When individuals support a cure as their own choice they are called names by pride advocates. My feeling is perhaps Autism Speaks has ignored the bullies who make mountains out of moll hills to get attention.

I am fully confident if approached respectfully an organization which has the permission of parents who have legal rights for the best interest of applicable individuals and other individuals with autism themselves to speak in their best interest would listen. It does not mean you will get your way. Also yelling about issues online when who knows who you really are is not really effective. ASAN has not tried constructive means only harsh confrontation. It may be your and the alike approach of social hostility that has prevented just yours and related views from being heard.

Nope. I have offered input on possibilities only. It's part of theoretical potentials. Since social politics is very complex and subjective I can only generalize as I am not psychic. In order to do so I have been taught to put my self in the shoes of another.

No you haven't. You have frequently striven to inform me of what I think no matter how many times I try to point out that I think something totally different...which is more than a bit naughty of you.

Everything else you say seems pretty random.

You mean as you yourself invent into the meanings of others and paint your own picture of the world that others must abide by or else it is exploitation. Clearly in my remarks which you are concerning I put myself in the frame of reference. It to was the style of writing. Yet you yourself clearly imagine into and invent into the intents of organizations thus predict their thoughts but claim I am doing it to you.



Beyond this set of remarks I am simply providing you a deflection of your style. If you imagine a monster where there seems to be none then you can be painted into a monster. This all is a waste of what could be otherwise more productive use of time and focuses in advocacy.

No, I mean you are striving to impose control on what I say, sometimes through deliberate misattribution of ideas, often through projecting your own behaviours and motives on to me. Which would be highly offensive if you had any real aptitude for it.

Mostly, I suspect you just want attention, and you think Autism Speaks will give you that.

Live a life you find happiness in because this you vs. Autism Speaks for them bothering in the first place won't do it for you. I have no interest in geting Autism Speaks attention and in fact they are not even part of any sort of mailing list. It's you on the other hand that demands not just their attention but entire revision. There are more important things in life then damning people for trying especially when many more appreciate them bothering in the first place. If you want to make remarks yet cannot tolerate people with autism disagreeing with you or making sense of it then don't speak in the first place.

Told you so...

Anything for attention plus a pathological need to control...

...and once again to misinform me of what I think (just in case I ignore you if you don't)

I do not want a "revision" of "Autism Speaks" - EVER.

I want them to either shut down or go away and speak for the rain forests or something else where they can do no more harm.

Nice little social game of yours. Deny what is obvious say what is obviously already apparent. Sorry won't happen they have the support of to many people with autism, families and friends. Obviously they do allot of good otherwise people would not support them. Perhaps your opposition has to do with mainstream politics but just as some do try to use my self-esteem to do not whats in my and others best interest. Individuals that seek to end such an organization that has profoundly impacted autism as a whole due to awareness and the networking they do not wish to compromise should be suspect of potential other agenda's then simply I am insulted because autism is akin to my personal name. The rationale I put forth is true for some and the rest there may be the mainstream political motives with.

It's a complicated issue and it should be understood. Clearly your out to destroy and not help people get along and move forward to help one another. It is my opinion you should be stood up to and intellectually socially dissected to understand what makes you tick.

First time I ever heard what you really have on your mind called *THAT*.

I do not hide my intentions. I just think people that seek destruction of one another need to be sat down and talked to. More important things to focus on then hostility over simple words and beliefs. Failure to do so can indeed result in poor outcomes for those not even involved in the reckless conflicts. I recommend people agreeing to focus on more neutral advocacy efforts that can be progressed as a collective community. The division and constant bickering over matters no one will completely win just seems a waste. I wonder of the true intentions of those that seek constant division over life changing progress.

@zeraeph, you suggest that Autism Speaks denigrates people that have Autism, so far you have suggested that autistic people might be better off in a homeless shelter than residential care, discounted the potential that some 80% of Autistic people that do not have the same communication skills as you are not here to listen to any of this because the audience here shares the kind of intelligence you possess, and you continually attempt to denigrate any communication skills that Ci and I present here, when we express that we don't appreciate false statements, that can easily be refuted, about an organization that are at least working to produce results that are helping some Autistic people.

Your statement that Autism Speaks does nothing positive for Autistic people is simply a fallacious statement. While they may do nothing positive for you as an individual, people on this thread that are autistic have stated that they see the positive change in what they are doing and have expressed thanks to the organization.

Even if only one autistic person states this as a positive action, then your statement that the organization does nothing positive for autistic people is categorically false, unless you suggest that autistic people that feel that autism speaks are doing good things for them don't know their own mind.

In making a false statement about the organization, it is obvious that your attempt is to vilify the organization. The majority of people that have responded to the poll see positive changes in the organization; you may not like the reality of it, but there is evidence here that some autistic people believe the organization is changing in a positive way however small in degree it may be.

It's not just the website, they've changed marketing techniques, gotten autistic people involved in their organization; these are some of the changes that people have been requesting. There are many more improvements that can be made, none of which warrant yours or anyone elses support, but there is no need to make a fallacious statement about the organization.

Specifically your false statement is the organization does nothing positive for autistic people. Speaking for yourself and your own opinion is fine, but you are not in a position to speak for the autistic people that have expressed the opinion that the organization does positive things for themselves and other autistic people on this same thread.

Even those that disagree here that the organization has made significant positive changes in response to the criticism of the Autistic population, still understand the simple reality that the organization does do some good things for the Autistic population.

The other individual that was part of the ASAN organization in the last thread that you participated in about Autism Speaks, could see that obvious fact.

Here is your quote on the subject:



I can provide the seven positive actions, some of which, autistic people have expressed thanks for on this very thread if you would like me to present them for the third time for you to see; there is no need to imagine them as negative actions. And I will gladly provide many more positive actions as evidence that can be easily validated upon your request

Just wade through the 2010 Annual Report:
http://www.autismspeaks.org/about-us

Try to work out how much they pay a) themselves, b) research into cures/preventions, c) research into anything other than cures/preventions. and d) support.

If the 7 you already provided were your idea of "positive actions" all I can say is that I would hate to be on the receiving end of your idea of a "neutral action" let alone a negative one!

The form 990 filings available from Guidestar go into significantly more detail.

Thanks for the link.

The 2008 annual report had a pie chart which showed the breakdown of where the money is going in terms of percentages. That is where advocates first learned that 4% of the funds went towards services, as opposed to more than 60% towards research and at least 25% on "awareness." (This is my recollection of the figures.) We began to point this out in our critiques of Autism Speaks.

And, oddly enough, the most recent report doesn't have a pie chart like that at all, nor does the 2009 report, I believe. I'm not surprised by the lack of transparency from the organization. I can only assume that this means that the percentages have not changed significantly, and omitting the pie chart from the annual report is meant to obscure that fact.