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B19
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12 Feb 2020, 7:13 pm

I take a cynical view - the curebie removal may have been a calculated move to try to increase their donations.



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12 Feb 2020, 7:25 pm

Autism Speaks is never going to change. They're the same horrible organization that they've always been.


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12 Feb 2020, 7:27 pm

I'm going to light it up German with black, red and gold this April.


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12 Feb 2020, 7:42 pm

B19 wrote:
I take a cynical view - the curebie removal may have been a calculated move to try to increase their donations.

If true that a cure is seen as negative PR is a massive change. That ND movement that 10 years ago was a true outlier, way out numbered, way out funded, going against powerful media interests, a movement if acknowledged at all thought of as proof of the "disease" itself is an accomplishment that should not be underestimated.


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B19
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12 Feb 2020, 7:56 pm

I can suggest a more accurate new symbol for Autism Speaks, and I'm sure some of our talented artistic members could create it: a cash cow



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13 Feb 2020, 9:58 am

B19 wrote:
I can suggest a more accurate new symbol for Autism Speaks, and I'm sure some of our talented artistic members could create it: a cash cow

Isn't that why Autism Speaks is referred to as Autism $peaks by some autistic people?


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13 Feb 2020, 10:09 am

B19 wrote:
I take a cynical view - the curebie removal may have been a calculated move to try to increase their donations.

I agree. Perhaps Autism Speaks removed its cure statement to try to appeal more to autistic people and therefore make $$ off of them. This seems a bit unethical to me considering that the autistic community is considered a vulnerable group.


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13 Feb 2020, 2:13 pm

I'm done with them (this implies I ever liked them which I didn't). Their year of kindness won't work because as an organisation, they're anything but kind to autistic people.

Also, I don't want a cure. I don't want to be told I have a condition. I just want society to change. I would make a lot of contributions to a society which wasn't obsessed with soft skills.



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14 Feb 2020, 12:30 am

I wanted a context for what qualifies as an act of kindness, the options are to:

1 Fundraise for the charity and have your progress published on their site
2 Post on social media about kindness, noting A Speaks of course
3 Become an A Speaks advocate, promoting ASpeaks policies (in this category among other suggestions, volunteering at an A Speaks event is kindness, as is contacting an elected representative on behalf of the parents of children "with" autism and autistic individuals)
4 Purchase A Speaks merchandise with their clearly visible newly rebranded logo/message.

So there is an intrinsic reward for people who behave in these kind ways, a feel good factor.
And extrinsically people will know how kind you are.
Positive reinforcement for behaving kindly :)

I kinda read it originally to mean that A Speaks directly are going to do one million acts of kindness, lol.



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14 Feb 2020, 1:07 am

Can there really be any valid claim of kindness when all AS conditions are diagnosed only by deficits, unbalanced by strengths? Can there be anything more marginalising? And Autism Speaks uses the deficits like holy writ, like a club, to stigmatise, and has spread this attitude throughout the USA (particularly) and (unfortunately) to other countries.

For myself, I can neither forgive nor forget the dreadful, stimatising, patronising, narcissistic and unjustified words of Suzanne Wright, claiming her mission for ASC people was like that of "St Francis tending to the lepers" in front of the Pope.

Autism Speaks is so deeply flawed that 5 million acts of genuine kindness wouldn't take away nor heal the damage it has already done, and (I believe) continues to do. It held AS people back from progress that might otherwise have been made.



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14 Feb 2020, 4:25 am

The wainkstiens left out a colour. Green.


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14 Feb 2020, 8:26 pm

Check this out

The biggest autism advocacy group is still failing too many autistic people

Quote:
Autism Speaks celebrated its 15th anniversary this week with a colorful new logo to replace its traditional blue puzzle piece. In a video, the organization said it was “sharing a new, more inclusive Autism Speaks” that represented “the infinite diversity of perspectives and experiences of people with autism.” On the surface, including many diverse voices and acceptance of autistic people seems nice. The problem is that Autism Speaks has actively contributed to the hostility that autistic people face.

Obviously, the organization did not create that hostility, which has caused great suffering. But as the largest nonprofit related to autism, it spent years promoting ideas and information that furthered stigma and misunderstanding about the condition. In 2009, Autism Speaks released an ad titled “I Am Autism” that portrayed autism as a silent and sinister killer. The ad claimed that autism “works faster than pediatric AIDS, cancer and diabetes combined” and ensures that marriages will fail, financial ruin will ensue and that it will “rob [parents] of [their] children and dreams.”

Autism Speaks has run hundreds, if not thousands, of high-profile advertising and fundraising campaigns asserting that autism is a malevolent force that afflicts families and destroys parents’ lives. A few smaller groups, like Cure Autism Now and Defeat Autism Now! predated Autism Speaks, but none have had its massive budget and wide reach. The narratives about autism that Autism Speaks has put forth have defined and shaped autism in the public imagination.

Autism Speaks’ goals have seemed to change little. Last summer, it partnered with “Sesame Street” to promote a tool kit for parents of newly diagnosed children that, among other things, compares autism to leukemia and suggests that mourning is a normal and inevitable response to learning of an autism diagnosis. There is an entire section of the tool kit that walks parents through the Kubler-Ross stages of grief: denial, anger, bargaining, depression and acceptance.

“Many parents must mourn the loss of some of the hopes and dreams they had for their child before they can move on,” the guide notes in the section on sadness. Autism is neither a degenerative nor a fatal condition. No one dies of autism. But the rhetoric in the tool kit made autism diagnosis sound as though a child has died.

According to its most recently available annual report, a little less than half of Autism Speaks’s budget of more than $50 million in 2018 went to “awareness” campaigns and lobbying. Autism Speaks has consistently stood against autistic empowerment and self-advocacy on Capitol Hill. In 2014, the Autistic Self-Advocacy Network said Autism Speaks lobbied heavily to kill an amendment to the Autism Cares Act that would have set benchmarks for the inclusion of autistic people in the research and policies that affect their own lives. The Autism Cares Act gives billions of dollars to provider organizations and nothing to autistic-led organizations, services or quality-of-life improvements. The most recent reauthorization of the bill, signed by President Trump, allocated $1.8 billion.

Autism Speaks spent a third of its budget in 2018 on research to find the cause of or cure for autism. The problem? Many adults with autism do not want to be cured. Instead, we would like our quality of life improved. Autism Speaks took the word “cure” out of its mission statement in 2016, but it doesn’t appear that the cosmetic change has meant any difference regarding millions of dollars in research grants. There is no evidence that Autism Speaks’s funding priorities match the warmer, fuzzier image they are trying to present as an inclusive organization.

The branding change comes amid a growing acceptance of the concept of neurodiversity, the idea that autism and other neurocognitive disabilities are natural differences rather than afflictions. Dozens of major corporations, including SAP, Goldman Sachs and Ernst & Young, have launched “Autism at Work” initiatives, to promote employment of autistic people in the technology sector.

At the same time, more autistic adults have argued that they need to be at the center of any policymaking that affects their lives. This contrasts with Autism Speaks, which was founded by Bob and Suzanne Wright when their grandson was diagnosed with autism. The objectives of the organization have largely involved serving families — they have resources for parents, siblings and grandparents, but little for autistic people. The changes in rhetoric are meant to show that it is responding to shifts in society’s understanding of autism. But the attempt to appropriate the aesthetics of neurodiversity without changing conduct or content comes off as oblivious and craven.

Autism Speaks’s new logo, which now includes a rainbow gradient instead of the organization’s traditional blue, is meant to “embrace the diversity” of the autism spectrum. Since the 1990s, the symbol of neurodiversity has been an infinity symbol with a rainbow gradient for exactly that reason. But Autism Speaks does not acknowledge the connection in any of the materials it has released promoting its new, more inclusive look.

Similarly, Autism Speaks said it will use “identity-first language” in its materials going forward — saying “autistic people” instead of “people with autism.” It cited a poll last year on social media as the reason for the change. But again, the organization is decades behind much of the autistic adult community; in 1999, before Autism Speaks was founded, one of the founders of the neurodiversity movement, Jim Sinclair, wrote an entire essay about preferring identity-first language. Its change of heart came not because of a decades-long push for change by autistic advocates and organizations, but because of a Twitter poll.

To those outside the autism world, this may seem like an insignificant semantic difference. But it represents how Autism Speaks has had a monopoly on how people discussed autism and how it made a concerted effort to dismiss and disregard the opinions of autistic adults who have had the temerity to speak for themselves.

Autism Speaks has chosen to embrace the aesthetics of neurodiversity without adopting its principles in any meaningful way. It wants to talk about inclusion and acceptance while continuing to fund and promote precisely the opposite, and do it without acknowledging or crediting anything neurodiversity advocates have said or done for the past 30 years. Without even apologizing for the damage it’s done. To quote Autism Speaks’s latest campaign slogan: “Kindness counts.” But while kindness counts, listening and understanding can go much further.


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B19
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14 Feb 2020, 9:21 pm

Quote from the above article: "Obviously, the organization did not create that hostility, which has caused great suffering."

^ Classic exemplar of minimisation, intended to evade and deny responsibility for what A$peaks actually did - they stood by to pour masses of fuel on the fire of hostility toward AS people, aiming to turn into an inferno, and kept on doing adding the fuel.

It still does it, though in less frankly obvious ways. They caused great suffering, they intended to cause great suffering, to garner huge funds out of stigmatising AS people, who should never forget (nor minimise) that.

Autism Speaks is not, repeat NOT, your friend.



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14 Feb 2020, 9:37 pm

Image

Sounds like Aspies are now included in their inclusive community



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15 Feb 2020, 5:01 am

warrier120 wrote:
Check this out

The biggest autism advocacy group is still failing too many autistic people

Quote:
Autism Speaks celebrated its 15th anniversary this week with a colorful new logo to replace its traditional blue puzzle piece. In a video, the organization said it was “sharing a new, more inclusive Autism Speaks” that represented “the infinite diversity of perspectives and experiences of people with autism.” On the surface, including many diverse voices and acceptance of autistic people seems nice. The problem is that Autism Speaks has actively contributed to the hostility that autistic people face.

Obviously, the organization did not create that hostility, which has caused great suffering. But as the largest nonprofit related to autism, it spent years promoting ideas and information that furthered stigma and misunderstanding about the condition. In 2009, Autism Speaks released an ad titled “I Am Autism” that portrayed autism as a silent and sinister killer. The ad claimed that autism “works faster than pediatric AIDS, cancer and diabetes combined” and ensures that marriages will fail, financial ruin will ensue and that it will “rob [parents] of [their] children and dreams.”

Autism Speaks has run hundreds, if not thousands, of high-profile advertising and fundraising campaigns asserting that autism is a malevolent force that afflicts families and destroys parents’ lives. A few smaller groups, like Cure Autism Now and Defeat Autism Now! predated Autism Speaks, but none have had its massive budget and wide reach. The narratives about autism that Autism Speaks has put forth have defined and shaped autism in the public imagination.

Autism Speaks’ goals have seemed to change little. Last summer, it partnered with “Sesame Street” to promote a tool kit for parents of newly diagnosed children that, among other things, compares autism to leukemia and suggests that mourning is a normal and inevitable response to learning of an autism diagnosis. There is an entire section of the tool kit that walks parents through the Kubler-Ross stages of grief: denial, anger, bargaining, depression and acceptance.

“Many parents must mourn the loss of some of the hopes and dreams they had for their child before they can move on,” the guide notes in the section on sadness. Autism is neither a degenerative nor a fatal condition. No one dies of autism. But the rhetoric in the tool kit made autism diagnosis sound as though a child has died.

According to its most recently available annual report, a little less than half of Autism Speaks’s budget of more than $50 million in 2018 went to “awareness” campaigns and lobbying. Autism Speaks has consistently stood against autistic empowerment and self-advocacy on Capitol Hill. In 2014, the Autistic Self-Advocacy Network said Autism Speaks lobbied heavily to kill an amendment to the Autism Cares Act that would have set benchmarks for the inclusion of autistic people in the research and policies that affect their own lives. The Autism Cares Act gives billions of dollars to provider organizations and nothing to autistic-led organizations, services or quality-of-life improvements. The most recent reauthorization of the bill, signed by President Trump, allocated $1.8 billion.

Autism Speaks spent a third of its budget in 2018 on research to find the cause of or cure for autism. The problem? Many adults with autism do not want to be cured. Instead, we would like our quality of life improved. Autism Speaks took the word “cure” out of its mission statement in 2016, but it doesn’t appear that the cosmetic change has meant any difference regarding millions of dollars in research grants. There is no evidence that Autism Speaks’s funding priorities match the warmer, fuzzier image they are trying to present as an inclusive organization.

The branding change comes amid a growing acceptance of the concept of neurodiversity, the idea that autism and other neurocognitive disabilities are natural differences rather than afflictions. Dozens of major corporations, including SAP, Goldman Sachs and Ernst & Young, have launched “Autism at Work” initiatives, to promote employment of autistic people in the technology sector.

At the same time, more autistic adults have argued that they need to be at the center of any policymaking that affects their lives. This contrasts with Autism Speaks, which was founded by Bob and Suzanne Wright when their grandson was diagnosed with autism. The objectives of the organization have largely involved serving families — they have resources for parents, siblings and grandparents, but little for autistic people. The changes in rhetoric are meant to show that it is responding to shifts in society’s understanding of autism. But the attempt to appropriate the aesthetics of neurodiversity without changing conduct or content comes off as oblivious and craven.

Autism Speaks’s new logo, which now includes a rainbow gradient instead of the organization’s traditional blue, is meant to “embrace the diversity” of the autism spectrum. Since the 1990s, the symbol of neurodiversity has been an infinity symbol with a rainbow gradient for exactly that reason. But Autism Speaks does not acknowledge the connection in any of the materials it has released promoting its new, more inclusive look.

Similarly, Autism Speaks said it will use “identity-first language” in its materials going forward — saying “autistic people” instead of “people with autism.” It cited a poll last year on social media as the reason for the change. But again, the organization is decades behind much of the autistic adult community; in 1999, before Autism Speaks was founded, one of the founders of the neurodiversity movement, Jim Sinclair, wrote an entire essay about preferring identity-first language. Its change of heart came not because of a decades-long push for change by autistic advocates and organizations, but because of a Twitter poll.

To those outside the autism world, this may seem like an insignificant semantic difference. But it represents how Autism Speaks has had a monopoly on how people discussed autism and how it made a concerted effort to dismiss and disregard the opinions of autistic adults who have had the temerity to speak for themselves.

Autism Speaks has chosen to embrace the aesthetics of neurodiversity without adopting its principles in any meaningful way. It wants to talk about inclusion and acceptance while continuing to fund and promote precisely the opposite, and do it without acknowledging or crediting anything neurodiversity advocates have said or done for the past 30 years. Without even apologizing for the damage it’s done. To quote Autism Speaks’s latest campaign slogan: “Kindness counts.” But while kindness counts, listening and understanding can go much further.

Beat me to it.
FYI - The opinion piece was written in the Washington Post which is notable and very on topic for this section. The Author is Sara Luterman an Autistic person whom I currently quote in my signature.

B19 wrote:
Quote from the above article: "Obviously, the organization did not create that hostility, which has caused great suffering."

^ Classic exemplar of minimisation, intended to evade and deny responsibility for what A$peaks actually did - they stood by to pour masses of fuel on the fire of hostility toward AS people, aiming to turn into an inferno, and kept on doing adding the fuel.

I interpreted that remark to mean that hatred of autism/autistic traits predated Autism Speaks. The Nazi program Aktion T4 that murdered the disabled, the refrigerator mother theory, the experiments, the institutionalizations, the filicides, ABA with electric shocks and corporal punishment, the harmful misdiagnosis, the no empathy theory all predate the founding of Autism Speaks. As you said what Autism Speaks did was exploit these fears all too successfully.


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My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person. - Sara Luterman