Autism Speaks - is it good or is it bad?

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Both sides of the movement are glorifying autism and it doesn't help their cause when Simon Baron-Cohen's cousin Sacha compares autism to chlamydia in the movie Bruno.

I think Autism Speaks is run by a bunch of Hollywood and Manhattan hypocrites and spoiled housewives that have everything they want - a full wardrobe from Bloomingdale's and Neiman Marcus, that new BMW/Lexus/Mercedes in the driveway and vacations to Europe and Vail. The ASD pride movement is so full of themselves. How can you be happy with a disability that alters the way you see the world, I would gladly give my Aspie genes for a normal life - I want my friendships, I want my relationships, and I could care less about my special interests and my intelligence.

I'm stepping off my soapbox now.

well in the UK, Autism Speaks = Autistica, for those who didn't know that. Stay away from them.

Hey being Devil Advocate on this issue is difficult because of what I have to work with but the best that I can say is that they probably don't see themselves as villains and their cause as pure as the driven snow and in the best interests.

Having said this there is an old maxim that foes. "The road to hell is paved with good intentions" This is the path they walk don't and walk down in full belief that they are on a righteous crusade.

These PSAs and online ads from these guys can't stand them the very least. It's not a mental disease, it's a disorder like ADHD, Tourette's, OCD, Bi polarness, ADD. I can't stand them the very least, they send out negative sendouts to me. I'm am extremely smart, I may not have my license yet. But come on I was a homecoming king, nominated for student of the month, I participate in sports and after school activities and have lots of friends and sometimes it is indeed hard for me to be sociable and understand someone else, that is fine with me. They'll be their heads off:once I go to college and graduate from my major degree that I wan to lead. I mean they don't understand some of the most famous geniuses are suspected to have had it like:Enstein,Mozart, Tesla,Thomas Jefferson, well that's fine with me. I can cope what I was born with and understand there's lots of famous people out there that are aspies or have another form of autism like Temple Grandin and Daniel Tammett.Then screw them.

Honestly, I don't see the huge problem with Autism Speaks.

I understand there is a degree of controversy with their actions, but the opposition to Autism Speaks on this forum is so extreme, it feels like an ideological crusade (the "us vs. them" mentality) rather than anything grounded in reason or composure.

I happen to have a major problem with people who discribe me is defective and in dire need of a cure, I feel offended. Does that make me crazy? honestly I was aware of pity awareness autism campagins before my Dx is a child and the myths spread by the orginations that ultimately became autspeaks lead me to reject my Dx for meny years, I did not want to be the poor useless kid with autism being pityed. I would prefer to support someone like ASAN for example as I prefer to have real autistic people speak for me. Yes we can advocate for ourselves, we don't need selfish NTs doing it for us.

Another thing, I dream of the day I can be open during a job interview and be hired based on who I am, postives of autism and all, autspeaks isn't helping break the negitive stereotypes holding this back.

It doesn't have to be an issue as long as you don't make an issue out of it.

I'm surprised at how many people on this website base their self esteem and pride on their diagnosis.

Also, has it occured to you that there are people with autism that are much worse off than you, who can't even live independently, hold a job, function at all or communicate at all who genuinely NEED a cure?

Of course autism is a disability.

But I don't think Autism Speaks, and similar organizations, help severely autistic people either. In fact, I think they hurt severely autistic people even more than they hurt us.

Think about it. If you publicize the idea that autism is a tragedy, that autistic people can't possibly have a good life unless they somehow become non-autistic, where does that leave all those people with severe autism, trying to make their way in the world? If it's no use to find ways for them to live happy and fulfilling lives as they are, why not just stick them in institutions or group homes and forget about them until you find that magical cure? After all, they're not okay the way they are. And the children? Well, they need to be taught that the way they are is unacceptable, that the only way to act is the neurotypical way, that it's not okay to have a disability, that their lives are dead-end, hopeless, no-future lives. Having to deal with that kind of ideology is horrible whether your autism is mild or severe.

Autism Speaks, and similar organizations, doesn't want to make the lives of autistic people better. They want there to be no autistic people at all. Most likely, they will never find a cure--they'll find a prenatal test that can prevent autistic children from ever being born. And the ones that are born will have no place in the world if Autism Speaks has their way about it, because they spend practically nothing on helping children live their lives as autistic people in an NT world, and nothing at all on adults. Finding a cure for autism is something that probably can't be done because of how the autistic brain is physically different from the neurotypical brain. By the time autism is evident, it's hard-wired in. And a lot of the money they spend isn't even spent on research--it's spent on high-class fundraisers, fear-and-pity "awareness" campaigns, and six-figure salaries for the directors.

Why is it such a bad thing to be proud of your disability? It is a part of your identity. It doesn't mean you think you are better than others, any more than "black pride" means you think whites are inferior or "gay pride" means you think straight people are bad. It's simply saying that you like who you are.

Ask some of those severe autistics who you say "need a cure", and they'll tell you, at about the same rate as mild autistics, that they don't want one--that their autism is part of who they are. There are much more important things than not being disabled, and being yourself is one of them.

Yeah, that's exactly what I think about their approach, too.

By the way, aren't they behind Autism Talk TV?

For your infomation currently I live at home, work part time doing remeadial work well below my skill level and lose my communication very easily, or at least any quality of communication. I'm not proud of being autistic anymore then NT people are of being NT. Yes meny around people with autism have it much more severly, it has also been proven time and time again that with the right support, devices etc. these people can communicate quite well and gain alot of independance. The reallity is i'm autistic and I have accpeted that, good and bad, its time the people around us did as well.

Callista, that was a great post, sounds like something I would have wrote, you can speak for me anytime.

I'll add, the reason I mentioned the job interview thing is if you look at my resume and what I have to offer to a potential employer what I am really selling is autism, becouse I'm autistic and therefore I think and beheave like one. Theres alot of good in there to draw from however its of no use when I can't also use my diagnosis to also cover for my shortcommings in other areas, admitting autism is a sure fire way to be politiely rejected in life becouse of the stigmas created by autspeaks brand of advocasy. I'm severe enough that I simply can't sweep it under the rug and get by pretending to be an eccentric NT, it simply does not work. The whole autistics always have frequent viloent meltdowns/can't control themselves stigma has also made it harder to get medicals signed off for some things, eventhough my record is clean that way.

It makes no sense that to live open as an autistic I would have to fight a speical intrest group that is suppost to be advocating for me.

There's no reason you would be rejected anywhere for being born on the spectrum, unless you make it an issue.

You must be really lucky. There's still a lot of prejudice out there, and if you've never seen any of it then I envy you, but most of us haven't had that experience. Some autistics have been murdered just because they were autistic. More regularly, we are denied housing, education, employment, and equality in general.

I dont get more selfesteem and pride out of my autism, then I get from me being short sighted. ^^

Has it occured to you, that the problem to people may not be a cure, but that "autism speaks" accepts genocide as part of their cure. If they only seek for a real cure, that is helping affected people, and everyone can freely choose if they want to take it, would you think that this could be a reason why people dont like autism speaks? Why should I be disturbed by a cure, that helps people that want this help?

But right now they are funding money to research ways, that autism can be found already in DNA of fetuses. Nothing about this research is about curing anyone. Its simply about detecting life that is unworthy in the eyes of a society and killing it. You now, the kind of staff crazy nazi medicals did with jews, homosexuals, and mental ill persons, because of them being unworthy persons. Its not about the word you use, its about what you are really doing in the end. So the Nazis also used the word "cure" when it was about curing the "german blood and german folk" from vermin and pests like jews and homosexuals. So should we adore them now, simply because they used the word cure for parts of their murdering?

What difference do you see between an SS officer seeking ways to find hidden jews, so he can kill them because of being unworthy and "autism speaks" , seeking ways to find hidden autists in their mothers belly, so they can be killed because of being unworthy?

Do you know how many kids with trisonomy, that already can be detected, still are born? So average every 50th child has down syndrom. 90% of them are killed, because of "committing the crime of not being perfect", around every 50. "created" kid. In a world whose civilised parts, think that even murders have a right to live. So committing the crime of not being perfect is less accepted, than being a murderous a**hole. In germany and austria, parents get the tests payed from their health insurances. Because of that, people already have been offended, because of being "egoistic" and getting a kid with down syndrom "on purpose", that is a burden for society. There already have been discussion if "such people" should be aided by society, because of "their personal desicion" to get a ill child.

So I dont know, I have a partner since 14 years, but noone ever told me how to have sex that creates a down syndrom child "on purpose". As far as I know, i simply can decide if I want to try to get a child, how to get a specific one I dont know yet. And as I dont want to live in a world, that forces parents of down syndrom children, to "excuse" (!) themself, for being no murders upon their own child, I dont want to live in a future society that treats parents of autists as well. Autism is in my eyes nothing to be proud of. As it is nothing that I need to excuse myself, that should force my parents to excuse themselfs, or that should let me get down on my knees to thank my parents for not killing me. So an organisation, that is trying to build such an society, that is trying to research ways to kill unwanted autistic children, and treat us as vermins that needs to be wiped out to build a better humanity, can kiss my ass. As could any organisation that wanted to wipe me out, because of being short sighted, blond, female, white, or whatever...

But maybe the many "cured" down syndrom children, can explain this better to you. If you listen carefully and hear nothing, because of them being dead, they are already telling you their best argument. The only thing they were cured of, is being an equal being to normal people, and so they were cured of being alive.

So if autism speaks is so bad, why are well known people with AS/ autism working with them? Temple Grandin, and John Elder Robenson.

Hope this wasn't already posted, but almost all organizations have to post their 990 tax form publicly which allows the donator to make a wise choice based on how much money actually goes to research and stuff and how much goes into the pockets of the board members.

Here is a link to Autism Speaks via Charity Navigator dot org: http://www.charitynavigator.org/index.c ... rgid=12720

It appears that they use only around 30% towards the cause, the rest are program expenses and salaries. The really good charities don't take salaries and use 75% or higher towards the cause.

You decided, but I would not fund their high salaries.