Autism Speaks drops cure/prevention from Mission Statement

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ASPartOfMe
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12 Oct 2016, 1:48 am

From Autistic Speaks Autistic Board Member Stephen Shore's Facebook Page


"Cure" has been replaced with advocacy, support, and acceptance through the lifespan.
==================
Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.
-------------------------------
Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow
Old Language
" We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism"



Thanks to Jonathan Mitchell who is none to happy about this for the old language and alerting me to this development.

With all the changes at the top including two new autistic board I think we need to reasses our view of them.

As for me thier horrific past and the damage that was done can not be undone and I still do and probably will always have fundemental disagreements with them. If this is all a scam it is a damm good one. As the agenda setting organization for Autism policy in America and based on thier past closely monitoring what they do is a must. But at this point to remain openly hostile to them is living in the past IMHO.

A lot of credit or blame depending on your point of view belongs to the Neurodiversity movement and allies who accomplished this dispite having a fraction of the money, influence and social skills compared to Autism Speaks.

Stand


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yelekam
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12 Oct 2016, 11:48 am

Well it may be a step in the right direction. While it may start to give reason for reassessing them, I myself would prefer to wait a while and see how this progresses before adopting a new view of them. If they actually do continue forward with this, have a significant change in general mentality, and stop some of their more egregious behaviors, and do so at a degree where it can be convinced that this is a long term change, then perhaps they may stop being antagonistic. But as said, I'll wait and see. Since I don't trust them and actions can do more to convince than words.



AJisHere
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12 Oct 2016, 12:53 pm

Eh, whatever. They evidently haven't done s**t to find a cure anyway.


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ASPartOfMe
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12 Oct 2016, 1:30 pm

yelekam wrote:
Well it may be a step in the right direction. While it may start to give reason for reassessing them, I myself would prefer to wait a while and see how this progresses before adopting a new view of them. If they actually do continue forward with this, have a significant change in general mentality, and stop some of their more egregious behaviors, and do so at a degree where it can be convinced that this is a long term change, then perhaps they may stop being antagonistic. But as said, I'll wait and see. Since I don't trust them and actions can do more to convince than words.


Time will tell and the mistrust is more then warranted but I think appointing two autistic people to thier board of directors was more then words. "Follow the money" remains most applicable. Every conflict, even bitter deadly wars comes to an end at some point. An autism community that remains so divided hurts us the most. They will probably always be a parents centric organization that does things we will find abhorrent. But when the ND movement and them find common ground we should try working togeather, not assume they trying are to scam us and see what happens.


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13 Oct 2016, 2:48 pm

ASPartOfMe wrote:
From Autistic Speaks Autistic Board Member Stephen Shore's Facebook Page


"Cure" has been replaced with advocacy, support, and acceptance through the lifespan.
==================
Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.
-------------------------------
Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow
Old Language
" We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism"



Thanks to Jonathan Mitchell who is none to happy about this for the old language and alerting me to this development.

With all the changes at the top including two new autistic board I think we need to reasses our view of them.

As for me thier horrific past and the damage that was done can not be undone and I still do and probably will always have fundemental disagreements with them. If this is all a scam it is a damm good one. As the agenda setting organization for Autism policy in America and based on thier past closely monitoring what they do is a must. But at this point to remain openly hostile to them is living in the past IMHO.

A lot of credit or blame depending on your point of view belongs to the Neurodiversity movement and allies who accomplished this dispite having a fraction of the money, influence and social skills compared to Autism Speaks.

Stand
Autistic *cough* brainwashed *cough* board members. :lol: It's just a attempt to make their be less controversy. There was this old autistic member of autism speaks who left.


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13 Oct 2016, 2:50 pm

ASPartOfMe wrote:
yelekam wrote:
Well it may be a step in the right direction. While it may start to give reason for reassessing them, I myself would prefer to wait a while and see how this progresses before adopting a new view of them. If they actually do continue forward with this, have a significant change in general mentality, and stop some of their more egregious behaviors, and do so at a degree where it can be convinced that this is a long term change, then perhaps they may stop being antagonistic. But as said, I'll wait and see. Since I don't trust them and actions can do more to convince than words.


Time will tell and the mistrust is more then warranted but I think appointing two autistic people to thier board of directors was more then words. "Follow the money" re mains most applicable. Every conflict, even bitter deadly wars comes to an end at some point. An autism community that remains so divided hurts us the most. They will probably always be a parents centric organization that does things we will find abhorrent. But when the ND movement and them find common ground we should try working togeather, not assume they trying are to scam us and see what happens.

Well, I have trust issues as a result of past abuse so I just assume everyone is out to get me. So that is a little unrealistic. You might want to look up Only autistic member leaves autism speaks or something of the sort.


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13 Oct 2016, 3:02 pm

Pieplup wrote:
ASPartOfMe wrote:
yelekam wrote:
Well it may be a step in the right direction. While it may start to give reason for reassessing them, I myself would prefer to wait a while and see how this progresses before adopting a new view of them. If they actually do continue forward with this, have a significant change in general mentality, and stop some of their more egregious behaviors, and do so at a degree where it can be convinced that this is a long term change, then perhaps they may stop being antagonistic. But as said, I'll wait and see. Since I don't trust them and actions can do more to convince than words.


Time will tell and the mistrust is more then warranted but I think appointing two autistic people to thier board of directors was more then words. "Follow the money" re mains most applicable. Every conflict, even bitter deadly wars comes to an end at some point. An autism community that remains so divided hurts us the most. They will probably always be a parents centric organization that does things we will find abhorrent. But when the ND movement and them find common ground we should try working togeather, not assume they trying are to scam us and see what happens.

Well, I have trust issues as a result of past abuse so I just assume everyone is out to get me. So that is a little unrealistic. You might want to look up Only autistic member leaves autism speaks or something of the sort.


Yes we must continue to closely moniter them. If one or both of the Autistic members of the board of directors leaves, that would be very bad.


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ASPartOfMe
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14 Oct 2016, 12:59 am

Autism Speaks No Longer Seeking Cure - Disability Scoop

Article provides some background about how the change came about. Interviewed are Autistic board member Dr. Sreven Shore and John Elder Robison.

Anti Nuerodiversity movement advocate Jonathan Mitchell has reported

Quote:
I've also been told by Steve Shore that Brian Kelly who replaced the Wrights as chairman of the board of directors is more interested in funding service type things than science research.


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14 Oct 2016, 2:17 pm

I've lived on this world for too long to simply take the word of any press release I see. For all we know, this could be nothing more than a PR move on the part of an organization that has developed a rather unsavory reputation as of late. As far as I know, Autism Speaks remains a horribly corrupt organization without the best interests of people with autism at heart.

With that said, this could encourage a change in the public's perception of autism, which in the long term could eventually lead to society at large finally accepting autism. We have a long way to go, but this is a good first step.


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14 Oct 2016, 2:27 pm

Pieplup wrote:
ASPartOfMe wrote:
yelekam wrote:
Well it may be a step in the right direction. While it may start to give reason for reassessing them, I myself would prefer to wait a while and see how this progresses before adopting a new view of them. If they actually do continue forward with this, have a significant change in general mentality, and stop some of their more egregious behaviors, and do so at a degree where it can be convinced that this is a long term change, then perhaps they may stop being antagonistic. But as said, I'll wait and see. Since I don't trust them and actions can do more to convince than words.


Time will tell and the mistrust is more then warranted but I think appointing two autistic people to thier board of directors was more then words. "Follow the money" re mains most applicable. Every conflict, even bitter deadly wars comes to an end at some point. An autism community that remains so divided hurts us the most. They will probably always be a parents centric organization that does things we will find abhorrent. But when the ND movement and them find common ground we should try working togeather, not assume they trying are to scam us and see what happens.

Well, I have trust issues as a result of past abuse so I just assume everyone is out to get me. So that is a little unrealistic. You might want to look up Only autistic member leaves autism speaks or something of the sort.


That person is John Elder Robison, his reaction is in the article I linked above.


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14 Oct 2016, 2:58 pm

i just read that on facebook


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14 Oct 2016, 9:48 pm

I guess you could consider this to be good. As much as I have defended Autism Speaks you would really have to question how much the idea of a cure is actually a realistic goal. A good thing out of this is that the organization can instead spend its budget on aiding those most severely hit on the spectrum.



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15 Oct 2016, 12:17 am

Boycott Autism Speaks thinks this a scam, claims eugenics code words remain

From Boycott Autism Speaks Wordpress Page
#ActuallyAutistic People React to Autism Speaks “Change” in Mission Statement

Recently, Autism Speaks announced a change in its mission statement. They have removed the word “cure” while keeping words like “interventions”, “solutions” and talk about research into the causes of autism, which still implies that they have not distanced themselves completely from eugenics and “prevention” of autism.

Autism Speaks claims to want to increase “understanding and acceptance” after over a decade of working against those very things. This is not the language or intentions of autism acceptance. While this has been portrayed as a move forward, we at Boycott Autism Speaks are more than skeptical.

Editors Note: Many of the #actuallyutistic posters below are key members of the Autism Women's Network
What do #actuallyautistic people think?



“They haven’t apologized to autistics specifically or generally.

Therefore, they are still flagrant trash.”


Image: Screen shot of a Facebook comment by Lei Wiley-Mydske that reads:



“Autism Speaks saying they are done searching for a cure reminds me of how they claimed to distance themselves from the s**t science linking autism and vaccines while still funding studies into supposed links between autism and vaccines. So, forgive me for my pattern recognition. And they still have over a decades worth of apologies to make to autistic people and our families.#stillboycottingautismspeaks #boycottautismspeaks”
14657425_10210310011374255_878305839296293824_n

Image: Screen shot of a Facebook comment by Nick Walker that reads:


“The anti-autistic hate group Autism $peaks has updated its mission statement to remove references to “curing” autism. Some folks are talking about this as if it’s a huge step forward. Don’t be fooled. The new version of the mission statement has replaced the now-unfashionable word “cure” with repeated use of the word “solutions.” From a group that has consistently used the same sort of pro-eugenics rhetoric that the Nazis used (e.g., calling disabled people “burdens”), and continues to fund eugenics research, the use of the word “solution” is far more chilling than “cure.” It’s a code word that we Jews have heard before.”


14642277_10210307372868294_8920966210562502856_n

:jester:

Image: Screen shot of a Facebook comment by Amy Sequenzia that reads:

“So, Autism $peaks dropped the “cure” from its mission statement.

If you think I will praise the organization, you don’t know me.

The words A$ released look pretty at first sight, but I have learnt that when it comes to parent-led organizations, we need to pay attention to every word.

“Causes” and “interventions” are still there.

If you want to know the “causes”, the objective is prevention (eugenics)

“Interventions” = ABA. It means change who we are by torturous methods

Besides, where are the apologies for the years of hate, dismissal, silencing, and marketing against our existence?

I haven’t seen that statement yet

Still #BoycottAutismSpeaks”



Autistic adult Corina Becker reacted to the change on their blog, No Stereotypes Here:



“You want to change? Show us you can actually change. Until then, we’re not falling for your superficial gloss over, your charade. You’re not actually supporting us, you’re not actually listening to us, and until there is fundamental changes, you never will.”


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Last edited by ASPartOfMe on 15 Oct 2016, 12:33 am, edited 3 times in total.

Shahunshah
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15 Oct 2016, 12:29 am

You seem fairly objective there, ASPartOfMe what do you think of Boycott Autism Speaks statement?



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15 Oct 2016, 1:38 am

Shahunshah wrote:
You seem fairly objective there, ASPartOfMe what do you think of Boycott Autism Speaks statement?


I am not surprised for several reasons.
The cynicism and conspiracy beliefs mirrors not only the Autism Politics but American Politics in general.

Fear of eugenics has a strong basis in american history. Eugenics is American as Apple Pie. It was funded by such "charities" such as the Rockefeller foundation, and was popular in academia and the American general public. Nazis were both inspired and influenced by American Eugenics

Companies do use politically correct words to cover up bad intent all the time. That is what Public Relations firms are paid to do.

As we discussed in a previous thread the words and things they have done have caused stigmas that are still causing.

These next reasons will be controversial. Executive Dysfunctions are a common co-morbid of Autism. A part of executive dysfuntion is what is known a difficulty with "shift". It was on my BRIEF-A test for executive functioning. In laymens terms that means you have difficulty with changing circumstances. Then there is the idea of Autistic Black and White thinking. In this situation it would mean an organization is purely good or purely evil. But my almost 60 years of living has taught me most people and many situations are nuanced. Most is the operative word there are bad people.

To the points brought up by the cynics above
I wholeheartly agree that apologies if not more are warranted.
I wrote above I expect to always have fundamental disagreements with them. ABA and younger and younger diagnosis noted above is what I had in mind.

As I wrote above I do not expect them to ever give more then lip service to an older individual autistics such as my self. I do object to the idea implied that a parent centric organization need be always harmful to needs of people like me. I often rightly complain about people that claim people with mild severity should not advise parents of lower functioning kids because we are clueless because we do not have "real autism" or some other such nonsense. It goes the other way also. Being an NT parent does not preclude a person from giving useful advice. Some of the parent hating on the extreme end of the ND movement is a little too reminiscent of the "refrigerator mother" theory.

Even if this all an elaborate scam it is still a victory for the ND movement. A few years ago they were suing teen Autistics who made fun of them online. Now they have been forced to use wording that if it is a scam they dispise and will loosen stigma.

Summing up my advice, lets not "snatch defeat from the jaws of victory" . I have done that too much in my life.


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