So why exactly do we hate Autism Speaks?

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CockneyRebel
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12 Jan 2010, 8:09 am

Because most of us at WP don't want a cure, including myself.

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Asp-Z
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12 Jan 2010, 11:33 am

Laar wrote:

Snapdragonclover wrote:

"Autism Speaks" speaks, but do they listen?

maybe, but if they here something they don't like they do one of the following things:
1) speak louder.
2) ignore you.

3) Sue you.

Snapdragonclover
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12 Jan 2010, 8:12 pm

Asp-Z wrote:

Laar wrote:

Snapdragonclover wrote:

"Autism Speaks" speaks, but do they listen?

maybe, but if they here something they don't like they do one of the following things:
1) speak louder.
2) ignore you.

3) Sue you.

4) Make another ridiculous video.

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adamrollick
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19 Jan 2010, 10:40 pm

Vector wrote:

Why I Hate Autism Speaks:

1) The name. Autism Speaks does not include people with autism on its board or in any decision making capacity. It has threatened autistic children with legal action because they made fun of it. The policy of Autism Speaks is to silence autistic people.

2) The emotional abuse. Autism Speaks takes the position that any expression of the humanity or dignity of people who have ASD threatens the families of people who have low-functioning children. Autism Speaks spreads the lie that it is okay to emotionally abuse us because we have no feelings and don't really notice. If we say, "We do have feelings," they say, "The fact that you can say you have feelings means you don't have autism."

3) The lack of support. Autism Speaks is entirely cure based. It spends less than 5% of its budget on services for people with ASD.

4) Poor use of resources. Autism Speaks also overpays its executives and manages its money badly.

[Removed - M.] i would egg their headquarters if they were near my house

Knightmessenger
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20 Jan 2010, 1:23 am

I did some searching on facebook and found these groups. I mean the high salaries part really pisses me off, that's just charity fraud. I haven't joined any yet but I wanted to point them out to those that might be interested.
Autistics Against Autism Speaks
http://www.facebook.com/group.php?gid=276998370593

Protesting Autism Speaks "I am Autism" video
http://www.facebook.com/group.php?gid=183608095328

Autism Speaks Does Not Speak for Me
http://www.facebook.com/group.php?gid=115951075410

Autistic Rights
http://www.facebook.com/group.php?gid=67839530610

So far after looking at the official Autism Speaks, I don't like how their site is biased and one sided. GRASP tries much harder to present all sides of areas of controversy within the autistic community. That is the organization that should be getting support. Even disregarding all the negative stuff I've read here and elsewhere, GRASP seems much more open, accepting and understanding.

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Asp-Z
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20 Jan 2010, 12:33 pm

Knightmessenger wrote:

So far after looking at the official Autism Speaks, I don't like how their site is biased and one sided. GRASP tries much harder to present all sides of areas of controversy within the autistic community. That is the organization that should be getting support. Even disregarding all the negative stuff I've read here and elsewhere, GRASP seems much more open, accepting and understanding.

IMO, the best one in the US is ASAN. It's an autism charity which... Get this... Is actually run by autistic people!

passionatebach
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17 Feb 2010, 2:54 pm

I personally have very little problem with this organization. I feel that anyone who brings awareness to autism and Aspergers is better than no coverage or awareness of a disability.

I do agree though, that they focus a little too much on the most severe of cases. This is not limited to this organization though, as an example, pick up any book on Aspergers/Autism and you will see what I mean. They prepare parents, educators and others in the autistic's person's world for the worse case senario. Many of the topics that are discussed in these books never applied to me, so I have found them to be condescending.

If you do not agree with the mission of Autism Speaks, send them a letter or an e-mail, or visit one of their offices around the country regarding your viewpoint. I have included a link with contact info.

http://www.autismspeaks.org/contact/index.php

I have found that speaking directly with people regarding a complaint or suggestion how they can improve themselves can have a good impact. If enough people correspond with Autism Speaks on how they can improve their mission or update their viewpoint on Autism/Aspergers, they might change. As an example, I have corresponded directly with my local public officials for many years now, through letters and e-mails, attending public meetings, conversation and letters to the editor. Many times they have taken my input into consideration and applied it to their decision making process.

Just my two cents worth.

passionatebach
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17 Feb 2010, 8:10 pm

I have been thinking about this all night and have a theory as to why they promote only the most severe cases of autism to the general public.

I helped a friend run a community of 1,000 people after a big flood a couple of years ago. I had a lot of contact with both local and national non-profits. One of the things that non-profits agencies do in order to raise funds for their causes is to bring attention to sob stories that involve their cause so people will contribute money and time. Just look at that ASPCA ad that uses Sarah McLaughlin's song, Angel. I think that this is why Autism Speaks puts the videos, ads and literature out that they do, with the message that they convey.

On the other hand, people also contribute when they hear of stories of people associated with a certain cause overcome the odds. I did this again, when I was helping in my friend's community. My friend was appointed mayor of the community after the flood. I told people of his struggles and disabilities as a child. In many ways, this gave people a segue to give money and time in his community, and may of been an underlining reason why rebuilding was so expedited in that community.

I still would like to write Autism Speaks and let them know that there are people within the autism/Aspergers community that have made great contributions to industry and society. Along with promoting the sob stories about severe cases of autism, this may also give them another soapbox to promote autism/Aspergers, so people can take interest and contribute time and money for this cause.

pat2rome
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17 Feb 2010, 8:33 pm

passionatebach wrote:

I still would like to write Autism Speaks and let them know that there are people within the autism/Aspergers community that have made great contributions to industry and society. Along with promoting the sob stories about severe cases of autism, this may also give them another soapbox to promote autism/Aspergers, so people can take interest and contribute time and money for this cause.

That's a very nice idea, but Autism Speaks isn't going to portray any positive stories involving autism. They look upon it as a curse only and something that must be eliminated. They refuse to acknowledge any positive aspects or successes.

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Asp-Z
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18 Feb 2010, 5:50 am

passionatebach wrote:

There are two reasons why Autism Speaks make everything look so negative:
1) Money - as you said, sob stories get more money. Autism Speaks then spend this money on more propaganda and massive salaries.
2) The people running it are horribe, at least from what we publically know about them. The person who's the executive vice president of Autism Speaks actually said she would drive her autistic daughter off a bridge if it wasen't for her other NT daughter. I believe you can watch her saying that in the Autism Every Day propaganda film.

By the way, I'm not exaggurating when I say propaganda. Wikipedia says propaganda is:

Quote:

Propaganda is a form of communication aimed at influencing the attitude of a community toward some cause or position. As opposed to impartially providing information, propaganda in its most basic sense, presents information primarily to influence an audience. Propaganda often presents facts selectively (thus possibly lying by omission) to encourage a particular synthesis, or uses loaded messages to produce an emotional rather than rational response to the information presented. The desired result is a change of the attitude toward the subject in the target audience to further a political agenda.

Which is exactly what Autism Speaks are doing, giving a one-sided view of autism so they can exploit it for their own purpose and financial gain.

Adventus
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18 Feb 2010, 2:03 pm

The funniest part of Autism Speaks is: If they do find a "cure", it will most likely be found by a person with Aspergers whose focus is finding a "cure".

Many modern discoveries are made by people with aspergers due to the fact we see the world differently.

passionatebach
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19 Feb 2010, 1:00 am

Asp-Z wrote:

Which is exactly what Autism Speaks are doing, giving a one-sided view of autism so they can exploit it for their own purpose and financial gain.

I watched the video, and I found the VP of Autism Speaks comment personally tactless and tasteless. But again, there probaly are parents that have children with severe disabilities that have felt the same way in private. But from a tact standpoint, that is where that comment should be kept, in private.

In researching this group, I come under the impression that they are a front for the pharmaceutical industry. A number of people in leadership positions within the Autism Speaks organization came from the pharmaceutical industry. I imagine that they see genetic testing and treatments, and pharmacological treatments, therapies and testing as a means of making money for the drug companies. This is maybe why you see this group promoting the "cures" and the "research" that they do. It is not only shunning those with mild Autism/AS, but much rather also taking advantage of those folks with severe autism as a means of making money for big pharma.

Meow101
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19 Feb 2010, 3:18 pm

OMG that video.... :roll: :eew: :wall:

Nuff said!
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Jono
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10 Nov 2010, 3:28 pm

bump.

Autism Speaks still tends to use their disease laden language when characterising autism. Some of the things they say, like calling it a "growing crisis" is just not accurate.

AsIndsigt
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11 Nov 2010, 6:51 am

especially when considering this:
http://www.time.com/time/health/article ... 15,00.html

CockneyRebel
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11 Nov 2010, 7:37 am

Jono wrote:

bump.

Autism Speaks still tends to use their disease laden language when characterising autism. Some of the things they say, like calling it a "growing crisis" is just not accurate.

They can go to Hell. I'd like to sue them and put Depend's on their sorry little behinds.
:afro:

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