Autism Speaks...?

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I keep seeing things around here demoting a site called Autism Speaks, I checked out the website and I don't see anything really controversial there.

It is clearly geared towards lower functioning ASDs (only mentioning this because this place populated primarily by Aspies, or so it seems) and they promote treatment variation as opposed to insisting on one correct method.

So why are there so many random negative comments about them around here?

Autism Speaks is like a snail with a pretty shell. Normally it looks all nice and good but inside it is a slimy crawling bottom feeder.

Many of the things they do is not to help anyone but themselves. They use scare tactics, propaganda, and fear to further there global scam of making money from convincing parents that deep down they wish to kill their autistic children or an autistic child is better off dead.

O....K....where can I see some of this propaganda? That sounds awful! Their site displays nothing like that!!

There was once a site called NTspeaks a young autistic girl made it exposing it's bile but Autism Speaks unethically and illegally sent 14 lawyers on her to take it down plus if you look up their yearly income spending you'll see what they're all really about.

Well, the problem is mainly because they portray autism as some horrible disease that results in life stealing, soul crushing problems. Now I would agree that autism does indeed cause problems, but it handled correctly the autistic person can still have an enjoyable life. But rather then pointing out that a good life is possible, they only point out the problems which tends to make autism seem like some horrible tragedy.

You can see this video for an example of their work: http://www.youtube.com/watch?v=FDMMwG7RrFQ

The second reason it is opposed is because they spend a good bit of the money they raise looking for a genetic cause for autism. Now that in and of itself isn't bad, in fact it may help to understand the various types of autism and help lead to better treatment. However it must be pointed out that scientist do know the genetic causes of down syndrome and can test for it in the womb. As a result, 90% of the tests that come back positive for down syndrome result in abortions. The only thing genetic testing does for down syndrome is result in mass genocide. If a genetic test could also be developed for autism, then you can guess what the results might be.

There are also questionable accounting practices, such as giving the organizers of autism speaks quarter million dollar salaries which is a bit much for a charitable organization.

[youtube]http://www.youtube.com/watch?v=HDdcDlQVYtM[/youtube]

and here

http://www.youtube.com/watch?v=FDMMwG7R ... re=channel

here are just a few

Ok I watched the first video posted....nothing in it offended me. It shows very clearly, bluntly and honestly what it's like having LFA children. It is not an unfair depiction, as someone who has grown up around LFAs for around 25 years, I can say that with certainty. Autism isn't beuatiful and a magical mystery tour as many higher functioning individuals wish to believe. It is what that video shows. Like it or not. I've LIVED it!

I don't disagree with them donating money towards discovering genetic causes, it seems to be the most likely link, so they should persue it. Would you rather them put dollars into more research on the 'vaccination' rubbish or some other crackpot idea? That would be a complete waste. Abortions have nothing to do with discovering how the human body works, of people get abortions it's because that the kind of person they are and that's their choice.

Looking at their website it does seem as they believe that Autistics are not doomed, they envourage treatment and progressive therapies to help Autistic children lead better lives and put money into developing new treatments as well.

Autism Speaks clearly is not geared towards higher functioning individuals and it seems alot of people who make dergoatory comments have not known many LFA children or have LFA children.

If the organizers of Autism Speaks gets a healthy paycheck, that's fine, they don't seem to be so much a charity (although they hold charity events) but more of an organization that promotes awareness and understanding.

If she didn't make a negative site about them then they wouldn't have to have taken it down. If I saw someone take my company's name and make a mockery of it I'd take them down too.

KoS, people here take it as a personal insult, the whole cure autism now thing. I'm with you. I might donate some money to ASPIC, which is looking to treat and cure autism. Oh noes, I've gone to the dark side.

To me this just perfectly illustrates the complete segragation of Aspies and Lower functioning Autistics and also the complete and utter lack of understanding that Aspies have about lower functioning Autistics, their lives and their families. If anyone had even half a clue they would not see these videos as negative...they are REALISTIC. Of course you'd be against cures and treatments if the only side of Autism you see is your own experience of having the mildest form of the condition which, really, is nowhere near as debilitating as MFA or LFA or even true HFA. Some people clearly need to get a clue.

There is no good guy or bad guy. There is only a disagreement and I respect yours if you respect mine.

"Autism is worse than pediatric AIDS" is realistic?



If the views of "higher functioning" autistic are ignored, then whose views take their place? -- "experts" and others who have no internal experience of it at all. That argument is not really "you shouldn't speak for them," it's "someone ELSE should speak for them (probably me)." Well who is that someone else, and why are they more qualified?

There is a bad guy: those who seek a genetic test for purposes of prenatal genocide against autistics. Every way we can find to make life better for LFA people, to help them to develop and teach them to communicate, I am in favor. Killing them off before they have a chance at life, I cannot condone. Nor can I respect those on the other side of such a debate. There can be no respect for people who pursue genocide.

However, Autism Speaks seems to have backed off from the emphasis on finding a prenatal test, and they have recently appointed an autistic to their board, so I'm willing to give them a chance to continue redeeming themselves.

I can't really answer that, but I do understand the comparison. Also because of the rise of HFA/AS/PDD-NOS diagnosises people have started writing it off as a condition that "isn't that serious", I think that comparison is another attempt by another Autism awareness group to help people understand how serious it is and the issues that come with lower functioning Autism, it's what they've had to resort to in a way. Aspies run around saying "I'm autistic I'm autistic" and the common person has no concept of "a spectrum", they just see someone able to function independantly and communicate with ease, though they may be odd or akward, and they dismiss the seriousness as Autism as a whole.



Now....this, I'm trying very hard not to take offence to, but....yeah, it's hard.

Firstly, I would never presume that a low functioning Autistic would want ANYONE to speak for them.

Second, those of us in a position where we are forced to speak for our loved ones do so knowing that we love them, want the best for them and have spent our entire lives knowing them and understanding who they are. And they trust us.

Where do you think experts get their information on LFAs? Do you think a low functiioning Autistic walks into a doctors office and can suddenly open up and tell the doctor all the information about himself and what he does? No! It's the parents and siblings and other loved ones. Experts don't speak for Autistics, they relay information that has come from the best possible source.

Are you seriously trying to tell me I should put you or another random person with AS into the position of interpreting my brothers random flails and sounds? Should I entrust you to know what they want and need at all times? Do I believe you have a higher understanding of them than me simply because you share a condition on the same spectrum? I wouldn't even bother considering it. Having AS gives you no higher understanding of LFAs than any other person, bar the fact that you may have researched the conidtion a little. I think I'll take my 25 years of being part of thier lives over a diagnosis thanks.

I personally know a large number of people who've 'LIVED' it for a similar amount of time, who wouldn't agree with you on this. I'm not saying you are wrong, but neither are they. Everybody's entitled to their own opinion. We, as people on the spectrum, often have a tendency to investigate charities like Autism Speaks, because judging from their name, it affects us, as we Are autistic. With whatever knowledge we happen to gain, we form our own opinions, differing greatly from each other. We're entitled to that.
I think that's a huge issue we have with Autism Speaks; those who aren't on the spectrum, and who don't feel the need to investigate charities (for which I don't blame them at all), are entitled to that, too. Yet all the majority of them ever get to see is the positive side of it. There are negative sides, and everybody has a right to be informed of both sides before forming their own opinion. However, when the negative sides are exposed, they unethically and illegally threaten with lawyers and what-not, to have it removed. (As ebonywinter pointed out in his post.) How is that fair? Shouldn't freedom of speech apply to everyone, including those who are against something?

If Autism Speaks is merely LFA-focussed, they should state that more clearly. Even more so, they should alter the statistics they use to show the seriousness of the autism-epidemy, to exclude the much larger amount of higher function autistics. The way they portray it now, is false propaganda.



I think it's pretty ignorant to say HFA's can't offer insight. Nobody here is saying we are experts, and nobody is devaluing the expertise of the people who've lived a huge part of their lives in the presence of an LFA individual. I, and I know many others criticising Autism Speaks, genuinely applaud your type of expertise. It's often the closest you can get to understanding an LFA individual. The one expert on your brother's situation, is your brother himself. Chances are, nobody can understand the way he communicates this knowledge better than his family can.
It wouldn't hurt Autism Speaks to ask for insight from the HFA community, though. We often have similar issues, in a lot of cases to a much lesser degree, but we can offer some insight into the autistic community. This is not to say HFA's need to take over and control LFA's lives. We're merely saying that HFA's could join forces with medical experts, parents, and whatever else they have on the board now, to include as many insights as possible. Nothing wrong with that.
Personally, I'd probably be happy if they had more parents on the boards. That would be a good start.

Are you on the spectrum yourself, KoS? I'm sort of offended by the way you're illustrating HFA's cluelessness, particularly by your post in which you said something about HFA's communicating with ease. I, and a large amount of people here, do not communicate with ease. In my case it is usually a very draining struggle leading to much frustration. (So far it has taken me ninety minutes to write all this.) Neuro-typicals often have higher expectations from us, so we make a tremendous effort. I'm just pointing that out, because I hope you're willing to retract that statement.
Could you please avoid making assumptions about how HFA manifests itself in us, just because we are higher functioning? You can't judge that. Even I, as an HFA individual, can't judge that for anyone but myself. We all have different issues, and we all have them to different degrees. I need a week of preparation before I can make a phonecall, I stand outside shops for ages preparing my every move before I can go inside, and I have plenty of other issues I won't mention, because there's no point in informing you of it.
I just sort of felt like you were devaluing HFA. I know that wasn't your intention, which is why I'm pointing it out.

I'm talking about him referring to going to the dark side and such I am 100% against what Autism Speaks does.

That was a joke. Look at my eyes rolling. --->