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Anyone who likes/supports Autism Speaks?

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cyberdad
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20 May 2011, 2:10 am

Callista wrote:
I really, really would not recommend Autism Speaks as an autism charity. They really don't speak for autistic people, either adults or kids or their families.

Most of us are actually pretty mad at them.

Reasons why:
--They pay their directors six-figure salaries... while claiming to be a "non-profit" organization. They spend a lot of money on "awareness", which can include paying huge sums to celebrities at fundraisers and paying for top-of-the-line catering. They're basically using donations made in good faith to have high-class parties.
--Their portrayal of autism is unrealistic, designed to make people fear and pity autism. They have been known to claim that autistic children are "empty shells", that we can't love our parents, that we break apart marriages and drain bank accounts, and that we are better off not existing at all. One famous example has an Autism Speaks director claiming that she has wished she could drive off a bridge and kill her autistic child, but was stopped because her non-autistic child was also in the car with them. The recent "I am Autism" video was nearly as offensive. They have also compared autism to pediatric AIDS or death in car accidents. If you don't see why this kind of thing is a problem, imagine having a child newly diagnosed, or being a child newly informed of his diagnosis, and knowing only what Autism Speaks tells you about autism. That is absolutely devastating.
--They don't support real autistic people in the world. Most of the money that doesn't go to "awareness" will go toward research aimed at finding a prenatal test that can abort autistic people before they are born. It's a very strong message: "We don't want people like you to be born." Eugenic abortion, in other words.
--They refuse to have autistic people have a real say in their organization. Their board of directors is entirely non-autistic. No autistic person has a decision-making role at Autism Speaks.

Case in point:
[url=http://www.google.com/search?q=%22autism+speaks%22+%22autistic+people"]Google search using the terms "Autism Speaks" and "Autistic people"[/url]
So yeah, this isn't just a fringe group getting annoyed at Autism Speaks; it's a huge chunk of the autistic community. We're frankly sick and tired of having Autism Speaks tell everybody we're walking blobs of autism who deserve only pity rather than inclusion, acceptance, jobs, education, and general equality with everybody else. It's hard enough to convince people you can contribute to the world just like anybody else can, without people like Autism Speaks to insist that you're fundamentally incapable and have to sit around waiting for a cure before you can live your life.


Everything I've read on their website and their public manifesto align with what you've said Callista, good post.



MyWorld
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20 May 2011, 2:11 am

There are number of reasons why I don't support Autism Speaks, but I am not against the cure at all for those who are trully suffering.



cyberdad
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20 May 2011, 2:25 am

MyWorld wrote:
There are number of reasons why I don't support Autism Speaks, but I am not against the cure at all for those who are trully suffering.


Not that I'm on authority on the subject but you can't "cure" autism, my understanding is you can assist an autistic person (and this includes those of us who call ourselves Aspergers) to better function in NT society.



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20 May 2011, 2:34 am

MyWorld wrote:
There are number of reasons why I don't support Autism Speaks, but I am not against the cure at all for those who are trully suffering.


Are you talking about LFA?

It's not the autism itself that's the issue, it's the other problems that they have on top of autism.


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Trencher93
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20 May 2011, 10:35 am

Callista wrote:
They pay their directors six-figure salaries... while claiming to be a "non-profit" organization.


Most "charities" are like this now. They pay themselves first, do fund-raising second, and spend any money that's left on their stated purpose. The alarmist "kids are starving in America" report that comes out every year is produced by a charity that pays their president as much as the President of the USA (or more - the figures always lag by several years), and I bet she has never missed a meal. Nice work if you can get it. I'd rather be austistic than be a scam artist like that. These charity scams that make millions one dollar at a time by deceiving people (look at all the retail stores that sell shoes, shamrocks, etc for $1) are one of my pet peeves. I guess the difference is that, for an NT, it's worth spending $1 to have the emotional release of helping the unfortunate starving/handicapped/etc children, while I see it as a scam to take money from poor people to pay yourself an extravagant salary.



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20 May 2011, 12:42 pm

Obviously the name "Autism Speaks" wrongly describes the people within the organization, and their agenda. Its like these people are saying that individuals diagnosed with an ASD are their autism - and that's not true. Yes, an individual might have a label that explains their "odd" behavior, but the individual is not their diagnosis. The same holds true of other disorders in the DSM. For instance, a person might have a diagnosis of Bipolar Disorder, but they are not the disorder itself.



Last edited by SyphonFilter on 20 May 2011, 12:43 pm, edited 1 time in total.

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20 May 2011, 12:43 pm

I'm also against Autism Speaks. I don't like that that one mother almost drove off the bridge to kill herself and her autistic daughter, but didn't because she had her other child who was in the car who is thank God, NT.

Another thing that I don't like about Autism Speaks is that another board member actually killed their autistic child.

The third thing that I don't like, is the part of the video where that one mother was changing her son who was 5 at the time, who had two soiling accidents in the same morning and she b*****s that she hopes that she's not changing diapers when he's 6. That really strikes a nerve with me. There are a lot of kids who don't have any disabilities who have the same problem, and not all autistics with that problem are defectives who ruin life for their families.

The other thing that I don't like, is that they want to prevent autistics from being born. They want us to be aborted before we are born. That's another thing that strikes a nerve with me. I'd rather be alive and autistic, than an abortion statistic. Abortion is murder in my opinion.

The other thing that I don't like about that organization is that I Am Autism video. That video is very offensive. Why the sad music? I wouldn't want my disability to be my name. I am not autism. I am a well adjusted member of society.

Why don't those people fork some of their money over to us?


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20 May 2011, 12:48 pm

CockneyRebel wrote:
I'm also against Autism Speaks. I don't like that that one mother almost drove off the bridge to kill herself and her autistic daughter, but didn't because she had her other child who was in the car who is thank God, NT.

Another thing that I don't like about Autism Speaks is that another board member actually killed their autistic child.

The third thing that I don't like, is the part of the video where that one mother was changing her son who was 5 at the time, who had two soiling accidents in the same morning and she b*****s that she hopes that she's not changing diapers when he's 6. That really strikes a nerve with me. There are a lot of kids who don't have any disabilities who have the same problem, and not all autistics with that problem are defectives who ruin life for their families.

The other thing that I don't like, is that they want to prevent autistics from being born. They want us to be aborted before we are born. That's another thing that strikes a nerve with me. I'd rather be alive and autistic, than an abortion statistic. Abortion is murder in my opinion.

The other thing that I don't like about that organization is that I Am Autism video. That video is very offensive. Why the sad music? I wouldn't want my disability to be my name. I am not autism. I am a well adjusted member of society.

Why don't those people fork some of their money over to us?


That sentence sounds like a good Stand-Up-Against- Autism-Speaks slogan. Well said!



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20 May 2011, 1:09 pm

So now I am reading the section of the website about 'Your Family & Autism".....and it disgusts me quite frankly. I mean first off they don't even bother to talk about how the child diagnosed under the autism spectrum feels it just goes into how the parents/family of them is supposed to feel. Apparently a greiving process is expected, well no offense to people in general but I as someone on this spectrum do not want 'pity' or people greiving because I might be more sucessful if I was a 'normal' person.



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20 May 2011, 1:23 pm

Trencher93 wrote:
The alarmist "kids are starving in America" report that comes out every year is produced by a charity that pays their president as much as the President of the USA (or more - the figures always lag by several years)


This statement is a little deceptive. Most people don't know how much POTUS makes (people tend to overestimate it, some underestimate it).


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20 May 2011, 1:52 pm

MyWorld wrote:
There are number of reasons why I don't support Autism Speaks, but I am not against the cure at all for those who are trully suffering.
Except that suffering has nothing to do with functioning level.

It really doesn't. Not just true of autism--true of lots of disabilities. Quality of life, as measured by the person himself, doesn't have anything to do with the degree of disability.


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Trencher93
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20 May 2011, 1:58 pm

MrLoony wrote:
Trencher93 wrote:
The alarmist "kids are starving in America" report that comes out every year is produced by a charity that pays their president as much as the President of the USA (or more - the figures always lag by several years)


This statement is a little deceptive. Most people don't know how much POTUS makes (people tend to overestimate it, some underestimate it).


A well-kept secret :)

http://en.wikipedia.org/wiki/President_ ... ted_States

(BTW, $400k is the low-end for charity presidents. Most national charities pay their presidents $500k-$1m. The president usually sets the pace for the next tier or two of management, much like the high-dollar free agents set the scale for the next tier of player in various pro sports.)



maxxim
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21 May 2011, 11:10 pm

While I don't like the way the orgainzation is structured and the fact that so much of its intake goes into its directors' pockets I support their medical research, and I'm considering signing up to donate my brain to their research program when I die. I've heard it said that a prenatal screening test for autism is 10-15 years away, and honestly if nobody else has to be brought into this world to suffer what it is that I go through then that'll be a wonderful occasion. How can one not be in favor of allowing autism to be screened for like PKU?
What I have is not something that leads me to identify with it and form an 'us' like one would with nationality, ethnic or linguistic heritage or even sports-team affiliation. Faulty genetics have put me through hell in a world in which I can't function and which I'll never be able to adapt to.