Why protest autism speaks?

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12 Nov 2013, 2:53 am

I wouldn't have needed to post that if people weren't so insistent that autism speaks has changed.

vermontsavant
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12 Nov 2013, 9:44 am

Verdandi wrote:

I wouldn't have needed to post that if people weren't so insistent that autism speaks has changed.

i was just joking, and autism speaks will never change that for.

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aghogday
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13 Nov 2013, 4:22 am

Autism Speaks already clearly identifies that there is a small percentage of the total..that are not looking for cures..for their issues associated with Autism..they are addressing the folks here that think they are okay..

That's great..but the fact of the matter is that many people with autism spectrum disorders are miserable in life..even some people on this website..that is one for only those really who are brave enough or have skills enough to communicate in writing on a public forum..

Even my sister on the spectrum..who makes over 60K a year..would not be comfortable in communicating publicly on a website..

So yeah..the cream of the crop is here..but it does not at all reflect the majority of individuals diagnosed with the many different versions of the autism spectrum disorder..that are associated with many extremely challenging co-morbid disorders..that Autism Speaks aims it's funding at everyday..

Those folks matter..and this is just an exercise in futility thinking that the people with real empathy in this country are not going to listen to those real problems and not do something about it...

Those are the folks that Autism Speaks is aiming the most to help..for those that don't need help..why even waste the time..complaining when there is at least some organization really trying to effect a positive change for those individuals that do truly suffer with Autism Spectrum Disorder associated problems...

Like my child who died from an autism spectrum auto immune system related disorder...

It's really bad stuff..when you die..you know..if you even care..

That's the thing..

Suzanne Wright cares..and so does her husband...

Try it.if you can..Empathy is kool stuff....

The ones that are complaining about their fellow human beings potentially gaining relief for their suffering that is...

Suffering is really not kool....

ya Know?

ya feel?

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aghogday
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13 Nov 2013, 4:29 am

And for the record that Autism Everyday Video was removed completely by Autism Speaks..the only people who are still circulating information..about it ..are people who are militantly wasting their time..complaining about an organization..actually trying to save lives..and most definitely the misery that is part of real everyday life for many people on the spectrum who are not nearly as fortunate and blessed as many of the people who post on this website...

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JakeDay
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13 Nov 2013, 7:37 am

http://paulacdurbinwestbyautisticblog.b ... ummit.html

aghogday
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13 Nov 2013, 11:34 am

JakeDay wrote:

http://paulacdurbinwestbyautisticblog.blogspot.com.au/2013/11/autism-speaks-kidnaps-policy-summit.html

GIVE ME a break this individual cannot even accept people on the spectrum who think differently than she does..she will delete any comment from her blog that is a different opinion...

At least Autism Speaks can tolerate different opinions..if nothing else at all...

But no...Autism Speaks is doing great things for people in the REAL WORLD..ALL THE TIME FOR PEOPLE ON THE SPECTRUM WHO REALLY NEED HELP..

YEAH ..IN THE REAL WORLD..NOT SOME ONLINE FANTASY....

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13 Nov 2013, 3:36 pm

Hey, look - the guy some people like to tokenize to prove that Autism Speaks is listening to autistic people just resigned his position:

http://jerobison.blogspot.com/2013/11/i ... peaks.html

Quote:

Mrs. Wright’s op-ed articulates a view of the “autism situation” that is very different from my own. She says things I would never say to people with autism and cannot in good conscience stand by. Given her role as leader of the organization, I am afraid it is my signal to exit the Autism Speaks stage.

I share with you the following letter, just delivered to Liz Feld, president of Autism Speaks.

For the past four years I have worked very hard to defend Autism Speak after a series of public relations missteps; beginning with the I Am Autism video. The most recent “Autism Speaks Point of View” http://www.autismspeaks.org/news/news-i ... all-action shows me that my words and efforts have had no real impact on the beliefs of the actual leadership of the organization.

I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.

aghogday, while I respect you, I simply do not and cannot respect your persistent apologism that is counter to the actual facts here.

Removing videos and hiring an autistic person are kind of revealed as the token gestures they are when the attitudes endemic to the organization clearly have not changed.

You're welcome to continue loving an organization that views autistic people as a problem to be eliminated, and view it as not problematic at all that their perspective is the dominant one when it comes to autism (not autistic) advocacy. Because of Autism Speaks (and organizations like it) autistic advocates have to define themselves as "autistic self-advocates" because advocacy is so thoroughly dominated by the voices and priorities of medical professionals and parents who are - as a vast majority - not autistic.

But hey, they removed a video once, so that means they're great, right? :roll:

Also, Paula's post is not wrong, however she deals with commenters.

Last edited by Verdandi on 13 Nov 2013, 3:46 pm, edited 1 time in total.

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13 Nov 2013, 3:45 pm

And this. Is Autism Speaks actually promoting the Judge Rotenberg Center as an option for parents?

http://www.autistichoya.com/2013/11/an- ... s-and.html

Quote:

Given Autism Speaks' history of damaging PSAs that exploit autistic people and our families, as well as their continual refusal to meaningfully include autistic people throughout their leadership and decision-making process, I am rarely shocked when new information arises about their projects and programs. I was not shocked at their latest PSA, an over twenty-minute-long mini documentary ostensibly about non-speaking autistic people who type to communicate, but which in reality faced sharp criticism from high-profile non-speaking autistic Amy Sequenzia, who types herself. I was not shocked at their announcement of a policy summit in Washington DC this week that will in all likelihood ignore the concerns of real autistic people about education, employment, housing, healthcare, or community living. I was not shocked (though I was deeply saddened) to read founder Suzanne Wright's message yesterday in advance of that policy summit, which once again resorted to fear-mongering language like epidemic and national health crisis, to objectify autistic people as burdens on their families or tragedies for society.

But I was shocked and profoundly disturbed by the revelation that at Autism Speaks' Walk Now for Autism in Washington DC, the city where I live, they chose to host and feature the Judge Rotenberg Center as one of their exhibitors at a resource fair.

Let me reiterate that one more time in case the prior sentence was not sufficient to jar your conscience:

[i]Autism Speaks featured the Judge Rotenberg Center as a resource for autistic people and their families.[/i]

Judge Rotenberg Center is known for torturing children and teens that are put into its care. They use electric shocks to condition children.

http://psychcentral.com/blog/archives/2 ... -for-teen/

I picked an article by someone who is not autistic, since apparently autistic people have no right to object to the attitudes and beliefs promoted by organizations who conduct activism, fund raising, research, etc. on their behalf (but not to their benefit). (that is sarcasm)

aghogday
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13 Nov 2013, 3:54 pm

Verdandi wrote:

And this. Is Autism Speaks actually promoting the Judge Rotenberg Center as an option for parents?

http://www.autistichoya.com/2013/11/an- ... s-and.html

Quote:

That's a pretty far reach in trying to implicate autism speaks in something bad..a vendor at a an event does not imply endorsement of that vendor for their methods of treating autism...

And as far as your respect for me and Autism Speaks I really don't care.. you haven't watched your own child suffer and die from a co-morbid condition directly associated with the spectrum that autism speaks has funded to potentially help some of these children NOT die in the future..

I could care less about hurting anyone's feelings here..about silly technicalities.when REAL LIVES IN REAL LIFE ARE IN JEOPARDY OVER THESE CO-MORBID CONDITIONS..

THAT'S WHAT COUNTS IN MY OPINION..

NOT silly technicalities..or etiquette over the emotional language used..to GET THE GOVERNMENT'S ATTENTION AND FUNDING to potentially save Real LIVES IN THE REAL WORLD....

AUTISM SPEAKS MAKES THINGS HAPPEN...

Internet rhetoric..is close to useless..

Except for a hobby or diversion from something worse....

Th@is all..

Of course..only in my opinion...

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Verdandi
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13 Nov 2013, 4:18 pm

Go to hell with your dismissive, trivializing comment about "internet rhetoric." The internet is not some rarefied realm that exists outside the real world. It is a part of the real world where real people interact and share thoughts and ideas and perspectives. These ideas can and do have an impact outside the internet. Also, if people discuss things online, those things can have a real world impact.

You can also take your dismissive, trivializing comment about "hurting anyone's feelings" to hell as well. These discussions are not about hurting people's feelings, but about - at an institutional, pervasive level, who gets to be heard when they talk about autism. And that by and large is not autistic people. Instead, you get autism speaks going on about how autism is a tragedy and people who have autistic children aren't really living. How I or anyone else feels about that is not the issue. It's the message that sends, especially given instances in which parents murder or attempt to murder their autistic children and are given a raft of excuses by the media and the population - including several people on this forum, including yourself - because it is just so wrong to view a parent who murders their disabled child in any way but sympathetically. You want to talk about feelings? Check out all of your apologist nonsense on that topic. We're not talking about feelings, we're talking about how autistic people are viewed and treated, and I do not see the value of encouraging a perspective in which autistic people are viewed as something we are not - and that PSA describes autistic people as something we are not. That is, we're not problems to be solved.

Stop and think about why organizations like Autism Speaks, which currently has zero autistic people on its board , with its message tailored to exclude autistic people from policy discussions about autistic people has such a loud voice while organizations like ASAN cannot gain enough traction to operate independently. Think about that for a minute. Why is it that autistic people who try to speak up are shouted down? Hell, you're trying to shut me up right now because I spoke ill of your sainted Autism Speaks.

Also, regarding the Judge Rotenberg Center being featured at Autism Speaks' resource fair? You make it sound like Autism Speaks bears no responsibility for who is allowed to exhibit. As if they couldn't say "We won't allow known torturers to exhibit at our event." Which they did not say, but not because they could not but because, for whatever reason, they chose not to.

You don't need autism speaks to fund this research. Considering that virtually none of its money goes toward helping autistic people who are alive right now but who cares about real people when there are people who might exist someday that they can help instead, right?

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13 Nov 2013, 4:48 pm

Seriously, these paragraphs from autistic hoya's post:

Quote:

This is the organization that is hosting a national policy and action summit to develop a national plan on autism in Washington DC this week. An organization that explicitly and unabashedly partnered itself with the Judge Rotenberg Center. Autism Speaks' history of excluding autistic people from leadership (up through the utter absence of any autistic people whatsoever on their board in the history of the organization's existence) ought to be troubling already — and their repeated insistence on justifications for violence against autistic people murdered by family members or caregivers shocking to the conscience. This alliance between Autism Speaks and the Judge Rotenberg Center is outrageous beyond belief.

I urge policymakers and community members interested in supporting autistic people and our families to support disability rights organizations led by disabled people. It is not possible in good conscience to lend one's support to an organization that not merely siphons money away from local communities and into research that does not benefit autistic people, but actively aligns itself with a facility with a widely publicized, well-documented history of brutal abuse and torture of people with disabilities.

Those of us who are autistic deserve a national plan on autism developed with us included at the table at every step of the way. We deserve a national plan on autism that seeks to benefit us rather than harm us. We deserve a national plan on autism that condemns abuses such as those at the Judge Rotenberg Center rather than encourages complacency with those practices, let alone directly endorses them. We deserve a national plan on autism that moves away from the language of pity, fear, and tragedy, and toward achieving equality, access, and inclusion in our communities.

Autism Speaks — it is well past time for you to listen.

What exactly is wrong with this that autism speaks is our only hope?

greenturtle74
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13 Nov 2013, 7:07 pm

John Elder Robison has resigned from the Autism Speaks board in protest of their offensive rhetoric this week. The self-advocates are really making themselves heard; makes me proud.

I wonder whether Alex would also consider disassociating from them?

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13 Nov 2013, 7:39 pm

Autism Women's Network speaks out against Autism Speaks' "national autism plan" for excluding autistic people:

http://www.mmdnewswire.com/national-aut ... 30285.html

Quote:

Autism Speaks excludes Autistic people from discussions on National Autism Plan

By Professor Ibby Grace, AWN Board of Directors

Lincoln, NE (MMD Newswire) November 13, 2013 - - On Wednesday, the Autism Women's Network (AWN) condemned Autism Speaks, Suzanne Wright, and all entities involved in the publication of "Autism Speaks to Washington- A Call for Action" and its hostile and dishonest portrayal of Autistic people. AWN denounced Autism Speaks, the largest Autism Advocacy Group, for hosting a Summit on Autism in Washington, D.C. this week which excluded the participation of Autistic people while simultaneously endeavoring to secure a national plan on Autism.

AWN is encouraging the Autistic community and allies of Autistic people to make lawmakers aware of the exclusion of Autistic people from events and meetings this week in Washington, D.C. AWN has also organized a Social Media Campaign to bring attention to the damage that Autism Speaks does to the Autism Community by exploiting Autistic people and their families with false and negative characterizations of Autism and its effects on families.

AWN is one of many Autistic rights groups condemning Autism Speaks for its continual exclusion of Autistic people from matters that concern them. "It is notable," said Autistic Activist Sharon daVanport, President and Cofounder of AWN, "that Autism Speaks does not have a single Autistic person in a leadership position. This is virtually unheard of amongst major disability rights organizations. We are urging lawmakers to adopt the position that a national plan on Autism cannot be discussed without the inclusion of Autistic people. The absence of Autistic participation in decision making is evident in the abhorrent article, Autism Speaks to Washington- A Call for Action."

In reference to Wright's letter, Non-speaking, Autistic activist and poet, Amy Sequenzia said, " Ms. Wright used harsh and even hateful words to depict Autistics like me, the ones who require around the clock help. To her, we exist to make the lives of our parents miserable. Of course, she ignores the existence of Autistics who do not require the same amount of help, Autistics who raise kids and pay taxes, Autistics that do not fit their picture of autism as tragedy. The Summit Autism Speaks is promoting does not have Autistic voices. We are not welcome in the event and our input is undesirable. Not surprising either."

[b]Parents of Autistic children are beginning to distance themselves from Autism Speaks. Beth Ryan, owner of the popular Facebook Page, "Parenting Autistic Children with Love & Acceptance" and mother to an Autistic 7 year old stated, "I resent the deplorable language that Autism Speaks habitually uses to describe Autism. My Autistic daughter is not a tragedy. She is not a statistic. And she is not ripping our family apart. She is a cherished part of our family unit and part of the glue that holds us together. Autism Speaks doesn't speak for my family."[/b]

People are abandoning Autism Speaks because of its hostile/exclusive tone toward actual autistic people (which includes children).

But Autism Speaks is totally doing good guys, no reason for anyone to criticize it ever because they stopped promoting a video that's still accessible online. :roll:

(sarcasm)

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13 Nov 2013, 7:41 pm

Plus an advocacy organization's statements about the people they theoretically advocate for are completely permissible no matter what because they do good things too! :roll: (more sarcasm)

I hate it when people try to sell me on things that aren't true.

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13 Nov 2013, 9:44 pm

Haha! thanks.. I generated some emotional responses...

That's part of how i cured my autism yaknownow...

But..here's the thing.. lives are@ stake where autism speaks is concerned...

Per their funding research AGAINST the real problems associated with autism that many people suffer with...

The empty rhetoric is in thinking that singing to the choir is going to make anything change with Autism Speaks...

The guy that runs it is a several decade top notch CEO for NBC..

He's not going to be deterred by anything like this..

Other than maneuvering PR around IT when absolutely necessary...

The response from Suzanne Wright more than anything else likely vindicates her real opinions..

Of online folks..WHO really don't give a crap about those individuals who depend on research for any real chance at life...

And yes this is true..as some people die from co-morbids associated with autism...

That is the bottom line..

People die..

And Autism Speaks makes a difference in the real flesh and blood world...

FULL STOP...
AS YOU SAY..
AS YOU WERE...
THAT'S JUST MY OPINION...
TH@IS ALL....

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14 Nov 2013, 2:06 am

aghogday wrote:

JakeDay wrote:

http://paulacdurbinwestbyautisticblog.blogspot.com.au/2013/11/autism-speaks-kidnaps-policy-summit.html

$50 and the brooklyn bridge is yours,for $75 ill throw in the cross bronx expressway.

in all fairness to you, i dont need to read that blog to know its B.S either.

i dont trust any of them,there all liars

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