a disturbing trend in this forum favoring autism speaks

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Very nice. Autism Speaks does not speak for me, but they have let me speak for myself.

The worry isn't what Autism Speaks post online, but what they're actually doing in real life to develop eugenics.

Autism Speaks is a Chartered Non Profit Corporation, in the United States.

They raise money in the United States.

Companies in the United States developed Genome Sequenceing.

Universities train people for the work.

The United States has high unemployment.

The future of Science and Education depends on employment.

Offshoring the big contract to their State Supported friends in Communist China, seems Un-American, Anti-American.

That some results will be made public does not cover that overall it will reduce our ability to do research. A less developed domestic industry, less workers in the field, less education.

Another question is Intellectual Property. Grains have been Patented. Human cell lines have been Patented.

Doing the research in America, we have laws regulating research, where ownership goes to the discoverers.

Offshoring IP was not considered by Non Profit Legal Status, if they are acting as a Transnational Corporation, developing Patents in Cell Lines, Drugs, beyond the reach of US Law.

Non Profit Funding, Offshored, Private Results.

Drug Companies do provide a Public Service, but they are not given Non Profit Status.

The Autism Genome was gathered in America, funded by American Donations, Given Tax Exemption.

Now the funds are going to pay Communist China? This is a State Supported Enterprise. Part of the Government, and of the Army.

One is, is this a proper use of money raised here.

Two, ownership of results, Non Profit=Public.

Three, Those who do the work will develop the next generation of methods, machines, processes, and the economic benefits thereof.

America does not lack the domestic ability, needs it for the future of science, education, industry, which all point to there being other motives involved.

A Genetic Test would not be Patentable if it was developed in the United States with Public Funds.

Yes, it is incorrect, it was a mistake by an employee of the Zazzle company, autism speaks did not initiate any action towards the individual that made the allegation who was wanting the T-shirts produced by the Zazzle company. The individual that made the allegation provided clarification of it on the AFF site link below.

That link you provided is several years old, if there were any serious additional problems perceived within the organization since then, I would think that an updated one would have been produced by now.

http://www.aspiesforfreedom.com/showthread.php?tid=13631

The rest of the site you provided does have some facts, but most of it is the opinion of the individual that wrote the article. Autism Speaks has admitted to making mistakes in the past. Marketing has changed, and they meet better business bureau standards and watch dog group standards that monitor charities, for meeting required standards for percentages of funding spent on programs and services vs. salaries and administrative costs.

I would be more interested in actual facts of what they are doing that needs to be improved now as an organization instead of focusing on potential PR mistakes that the organization was associated with years ago.

Areas that I can see need for improvement in are providing more direct support for autistics, research into the adult population of autistics, continued improvements in the portrayal of autistic individuals, and hiring more autistic individuals. It appears they are working on some of this.

The person who started the site just doesn't happen to have updated it, that's all. Someone needs to come up with a better site really.

Autism Speaks continue to act exactly as they used to. Better PR does not a good organisation make. They still misspeak on behalf of autistic people (saying we're all monsters who must be cured of our horrible illness and acting as though kids are the only ones who are autistic for some, probably purely PR related, reason) while listening to hardly any of us, they still want to develop a eugenics program to ensure we stop being born in future generations (prenatal testing for Downs' means over 80% of people with that are never allowed life), and they still don't give a crap about us as long as they get what they want out of it.

Also, for a registered non-profit, they sure hand out some massive salaries. I believe the highest paid Autism Speaks employee got over $500,000 last year. And this is from a charitable, tax exempt organisation funded by donations, remember.

And, as you said, they also do very little to actually help autistic people. They actually spent more on office supplies than they did on their program for helping families with autism a year or two ago. Look up their financial records on their site if you doubt any of this, it's all there. In fact, I think more about their finances is on the link I gave you, but the most up to date financial records are on the official site.

Asp-Z, the salaries are of genuine concern. I wholeheartedly agree.

However, Autism Speaks is no longer portraying us as monsters, or as exclusively children. They are sponsoring Autism Talk TV, and if you watch episode 17 you will see that they are hiring autistic individuals for important positions.

They are funding Advancing Futures for Adults With Autism. They hired me to write an article about Hacking Autism, flew me out to San Francisco, and paid for my time and all my expenses. Why? Because they wanted the autistic perspective.

They have supported me, helped me acquire a book contract, and given me a large platform on their website to speak freely. They have not censored me.

I see no harm in recognizing these positive. I also see no harm in criticizing them if they screw up.

Here are links to articles I have written for their website...

For Autism Speaks:

- I Want My Money Back
http://blog.autismspeaks.org/2011/09/29 ... oney-back/

- Not Today: An Outsider in the Outfield
http://blog.autismspeaks.org/2011/10/11/not-today/

- Communication Breakdown: Hacking Autism Provides a Dose of Technology Part I
http://blog.autismspeaks.org/2011/10/17 ... eakdown-1/

- Part II
http://blog.autismspeaks.org/2011/10/21 ... eakdown-2/

- Part II
http://blog.autismspeaks.org/2011/10/24 ... eakdown-3/

- My Neurotypical Costume
http://blog.autismspeaks.org/2011/10/31 ... /#comments

@Tambourine-man once you sequence dna for anything it can be used for a pre natal test. why else would you bother to sequence dna? identify autism younger and more efficiently, so they say. how young, and for what kind of intervention. ABA or killing? autism speaks talks in vague terms about these things. they don't answer the tough questions. if you interview them and get them to give a yes and no answer backed up with evidence from past programs they have run and supported i would be willing to consider it with an open mind. i just find people who evade questions and use vague language that could have two entirely different meanings to be suspicious. and btw your idea about autism speaks being run by diverse individuals who don't always agree is fair, but all the most evil genocides were perpetrated by organizations made of people who didn't agree on every detail. so that proves no point. its just a restatement of human nature.

Their top salaries are now close to the 400,000 range for the president and chief science officer.

The founder was the President of NBC and Vice president of GE, so he had the contacts and also a 25 Million dollar contribution to start out with top level talent. And also, understood you pay for what you get, as far as potential results in an organization of any kind that requires specialized skills, experience, knowledge, contacts, and the ability to influence others.

I would be concerned if they didn't meet the BBB standards for similiar non charitable organizations, for percentage of money spent on salaries and admin expenses, but they beat the standards required.

I'm not so sure that autism speaks PR campaign is the same as it used to be. Nothing has been produced that comes close to Autism Every day and the I Am Autism Video that was produced in the past. In my opinion there are areas of improvement that do still need to be made though.

They stated in a recent interview that they now, do not have a goal for a prenatal test. The research they have funded, has made a definitive genetic cause for autism less likely, and the potential for any development of a prenatal test less likely, because the genetic markers now exceed 130 weak associations.

There are though, other organizations that stand to profit from a prenatal test that continue to research the possibility for some type of general statistical probability for a genetic test.

Not really an organization that provides significant support for high functioning autistic people, or one to support that wanted to support that specific part of the Autism Spectrum; they have focused on the more debilitating aspects of autism throughout their history.

It would be nice if they provided additional direct support, but I don't see them doing an incredible amount of direct harm to anyone, as has been suggested in the past.

Tambourine-Man, the fact they can afford to do that shows they have far too much money, but, more importantly, all of it just PR to hide their real agenda.

Yes, it's nice to pay off a few guys here and there and give some autistic people a space on their pretty little blog, and it's a far better PR strategy than what they had in the past, but at the end of the day, it's just that: a PR strategy. Their actual agenda remains unchanged. They are still developing a prenatal test to get rid of autism and the end goal of their organisation is to eradicate autism entirely. It's as simple as that.

So, yes, they now have a nice mask on, and yes, they're now throwing money at a few of the right people, but that doesn't make them any better fundamentally.

True, at one point they explicitly stated that their goal was to eliminate autism. They have never said that they want to eliminate autistic people.

Back then, they thought of autism as a disease that brought nothing but suffering. Their research has provided evidence that this is not necessarily the case. They are realizing that autism is complex, diverse, and not always a curse.

So they are changing their strategy to assure that they have a future and try and make up for past mistakes. No secret there.

This is a pivotal time - the best possible time for us to get in on the ground floor and influence them. We can help guide them, or we can sit back and throw insults.

Show us evidence. Don't just report it. This is fatuous.

Some good and thought-provoking posts as usual, Inventor.
But for once I don't think you have gone far enough.

When I think of a cure for autism I am minded of the Stepford Wives.

Autism is simply a different way of thinking, its an enhancer.

It enhances abilities, it enhances sensitivities, it enhances disabilities.

When the neurotype that craves power over the population gains the ability to alter the way we think the pressure on parents to convert their tragic autistic child into a little angel will be enormous and irresitable to most.

(Even then the little angels/cured auties will still be bullied because they are different and don't have the usual NT failings.)

But it is the NT'S who should fear this cure and campaign against it.

The onslaught of propaganda that autism is an epidemic and a tragedy is used to justify using us as the lab rats.

The people in power will not stop with us. Control is the means to power and wealth.

Who would then argue against using this cure on the prison population and then who's next? Dissidents?
Gays? In fact why not put the equipment in the maternity units and do all of them, except their own children of course.

The cure for autism is just the first step towards an Orwellian dream.

To eliminate autism, you must eliminate people with autism, surely? And while they obviously won't go out actually killing people, a prenatal test for autism will basically achieve the same result in future generations.

What they've done is pull the wool over peoples' eyes by deploying a clever PR strategy, because they realised that public opinion was not currently in their favour.

So, from what I can see, they're paying people off to speak nicely of them while still going about their old business in terms of their actual goal of, you know, wiping out autism. I've not seen any evidence to suggest that they're going to stop developing prenatal testing, for example.

The day Autism Speaks say that they will no longer research prenatal testing and will instead begin using their resources for good - helping autistic people and families who need support and so on - is the day I support them. And I actually will support them if they do this. I'll even donate some money to them if I can be sure it's now going to a good cause. But that's the day I'll do it, not the day they put out some nice PR about themselves.

Autism Speaks, I know you lot read these forums, so listen up, because I genuinely mean this. If what this dude says is correct, and you really changing your direction, change your goals as well as your PR, and you will gain a lot more support from everyone, me and a significant proportion of the autistic community included.

Of course. High redefenition. Murder yes, murderer, no. How can you eliminate aqutism without eliminating autistic people?


By what evidence? They haven't understood a thing from what I can tell. All I ever see is paranoia on the ground floor.


And your evidence is because they changed a word. For all we know they are working on anything right now. All you say is how you're ready to change the company by working with it but it's clear that you're entwined with its leadership and you disparage other self-advocates rather than work with them, which is what would actually happen if you wanted to help autistics influence autism speaks.

It's an Orwellian pipe dream. It isn't going to happen. When there is any evidence that it will, I will be alarmed. At this point there is not.

Even Autism Speaks is changing the language to cures for co-morbid conditions. Why? Because their research has revealed the impossibility of a simple, universal cure.

now tambourine man i'm not unreasonable. i could work with you by pm on a set of questions and put them in this forum to have people make constructive criticism on. i'm suspicious of autism speaks but i can see just as much as anybody else they do have a tremendous capacity to raise funds. if these funds were going in the right direction it could be a very good organization indeed. it could solve most of the problems we have. i can see that. but it just makes things a thousand times worse to have a well greased propaganda and corruption machine working against us. so at any rate, pm me if you like the idea of doing another interview with more specific answers to big questions.