Rather than listening to the legitimate criticism that Autism Speaks is being offered from the neurodiversity community (like the fact that people with autism are not allowed to speak at their events, even though their name is "Autism Speaks"), AS instead threatens to sue them.
Even for legal parodies, even for t-shirts that say, "Autism Speaks can go away. I have autism. I can speak for myself."
Pretty poor behavior for the org that refers to itself as Autism's "Big Tent".
(But really, if they don't listen to fellow parents like us who are looking for treatments and supposedly have the same goals as them, are we surprised that they don't listen to adults with autism who oppose "cures"?)
And its weird because, really, the point of all the of the stuff that we are doing to make our kids better is so that they CAN one day advocate for themselves, right? I mean, I disagree whole heartedly with the idea that finding a "cure" for autism is wrong, and somehow devalues people with autism, but I earnestly pray that my son will be an adult who is healthy and functional enough to process complex abstract ideas like human value and have t-shirts printed up to espouse his thoughts on the matter should he get a hankerin' to do so.
I know this may sound odd, but the fact that there are people with autism out there that can use cogent arguments to tell me that they think that I am jerk is encouraging to me. It means that it is possible that my son who wouldn't see danger coming if it was wearing a t-shirt that said, "I am danger" on it, might one day not only be able to comprehend and defend himself against concrete threats to his safety, but abstract, theoretical threats to his self image.
It gives me the hope that someday, Chandler could be a sixteen year old that borrows the car and stays out past curfew, yelling "I hate you, you have ruined my life" when he gets grounded and can't go to the foot ball game on Friday, just like most every other teen age boy has done at one time or another. ... and the idea of loosing an arguement with him, and having to apologize to him, is just to beautiful a thought for me to hope for.
If AS first priority is squelching criticism of their organization by people with autism, there is a much cheaper way to do that. Stop looking for a cure and don't teach people with autism how to talk. That way, you save money on both ends, you don't have to spend it on research and speech therapy now, NOR do you have to spend it on lawyers to get them to shut up later!
When reaching your goals for autism means stepping on people with autism, it is time for you to get out of the autism game and just go back to being a corporation that just steps on the regular ol'e consumer.
UPDATE: So it appears that in the case of the t-shirt, they did not threaten to sue over that specifically, but since they had contacted the tshirt company before about shirts with their name on it, said company decided to nix the one in qestion pre-emptively.
He jumped to the conclusion that AS did it.
But they still bullied a 14 year old over a parody site.
Showing posts with label Neurodiversity. Show all posts
Showing posts with label Neurodiversity. Show all posts
June 24, 2007
Injecting Sense into Autism Speaks, Part 3 - Alternatives
Wade has posted part three of Arrogance and Assimilation, his three part series on Autism Speaks.
In it, he discusses The Autism Society of America and the shift of their focus back to the ideals that Bernie Rimland had when he started both ASA and the Autism Research Institute.
Is ASA looking to step into the breach and be the large organization that will pick up the biomed torch?
Go read Wade's post, then come back and read the rest of this one.
Today on the Evidence of Harm list, David Humphrey, ASA board member, left the following post on a thread discussing ASA. ASA recently added Stephen Edelson and Martha Herbert to their board, both of whom are members of 'our team':
David is right in his estimation of Bernie. Bernie was a put up or shut up guy. If ASA was not on board with the program, he would have dismissed them, as he did for years, until they came back to the table just before he died.
The Autism Charity shuffle that is currently going on needs a score card to keep track of. I might just post something that can help us all sort out who is who and what they believe and are doing.
In the mean time, Autism Speaks still (arrogantly) remains silent on the criticism, Jon Shestack has taken a detour to argue with some of the more unforgiving voices in the neurodiversity movement (a path that usually yields few results of understanding or consensus and becomes difficult to extract oneself from) and we all wait for the word of the Special Masters.
If the Evidence of Harm movie is a hit, then I think that we have a sequel.
In it, he discusses The Autism Society of America and the shift of their focus back to the ideals that Bernie Rimland had when he started both ASA and the Autism Research Institute.
Is ASA looking to step into the breach and be the large organization that will pick up the biomed torch?
Go read Wade's post, then come back and read the rest of this one.
HOLD MUSIC PLAYING
Today on the Evidence of Harm list, David Humphrey, ASA board member, left the following post on a thread discussing ASA. ASA recently added Stephen Edelson and Martha Herbert to their board, both of whom are members of 'our team':
ASA is changing. The description of a loosely former network of chapters that pretty much operate of their own is correct.
The national ASA is made up of a Board of Directors democratically elected by ASA membership except for 2 appointments (I am one of the appointments). This group acts much more decisively and raises its own money. It does represent the 120,000 families that are members of the local and national chapters.
In the recent ASA national and regional election Steve Edelson of ARI and Doreen Granpeesheh both won against strong ASA chapter leaders.
Bernie Rimland founded ASA. They last formal action of his life was to negotiate with ASA and ARI a far reaching agreement in a Memo of Understanding.
I discussed this at length with Bernie and Steve Edelson - for those of you that knew Bernie - his vision was incredible - and he didn't compromise.
He saw a new future for ASA that would unite the parent community around TREATMENT NOW and meaningful research that improved the lives of families.
He saw ARI continuing its bold advocacy and sponsoring promising emerging treatments.
As a board member of ARI and well I am committed to both of Bernie's goals.
The national ASA accepted the MOU with Bernie 13-0.
13-0
It was not a strategic decision.
It was the right thing to do. Decided by good people.
The recent MOU with Easter Seals will be announced July 12th and will continue to define the future. The announcement will bring a new wave of changes we all have been advocating.
The ASA options policy is to respect all parents opinion and treatments as long as it does not create obvious harm.
ASA is an easy target since each chapter can make a mess out of unity and openness.
ASA will emerge into how Bernie sees it - provided we do this together.
If ASA does not work - it will take a long time to create something else in its place.
David Humphrey
David is right in his estimation of Bernie. Bernie was a put up or shut up guy. If ASA was not on board with the program, he would have dismissed them, as he did for years, until they came back to the table just before he died.
The Autism Charity shuffle that is currently going on needs a score card to keep track of. I might just post something that can help us all sort out who is who and what they believe and are doing.
In the mean time, Autism Speaks still (arrogantly) remains silent on the criticism, Jon Shestack has taken a detour to argue with some of the more unforgiving voices in the neurodiversity movement (a path that usually yields few results of understanding or consensus and becomes difficult to extract oneself from) and we all wait for the word of the Special Masters.
If the Evidence of Harm movie is a hit, then I think that we have a sequel.
April 20, 2007
Not Guilty By Association
As I look around today I see a lot of fear from the autism community, both parents of autistic children, and ASD adults, that the fact that Cho Seung-Hui's name has been linked to autism, it will result in increased prejudice against others with autism.
Perhaps it is just hopeful thinking, but I really don't think that will happen. Now we have only been on this road for three years, and we have already been seriously mistreated by those who just didn't understand autism and that should have known better, so I don't by any stretch want to give the impression that I am looking at this through rose colored glasses. Arrogance and prejudice among those whose lives are not touched by autism is real and needs to be taken very seriously.
However, the compassion that I see from the growing majority of people for what people with autism and their families go through while living in a world that just does not work right for them, I believe, will not be largely changed by this.
Even if Cho's diagnosis is confirmed with complete certainty, with autism as pervasive as it is (1 in 150), and autistic killers as rare as they are (I can think of 2 reported cases) people will come to the conclusion that his psychopathology was in addition to autism.
Sure there will be a few people who make the leap that all autistics are potential shooters, but those people are probably looking for a reason to look down on those who are different from them, and would have found another way to do it if not for this. Those people would have been lost to the cause of understanding and respecting those with autism regardless.
I don't know what will come in the days ahead, but it seems to me that the fact that the media is not jumping on the autism piece of this story, and we are not seeing AUTISM! graphics floating across pictures of Cho's face, says that even the 24 hour news networks, who tend to suck the marrow out of every facet of a big story, don't even really think that this guys autism is why he killed.
The autism community is talking about this a lot more than the rest of the world.
Autism is pervasive and almost everyone knows someone with autism now. They see the tenderness and sincerity that can come out of our kids. They won't be fooled into thinking that this incident teaches that autistics are dangerous any more than it teaches that Asians are dangerous.
Perhaps it is just hopeful thinking, but I really don't think that will happen. Now we have only been on this road for three years, and we have already been seriously mistreated by those who just didn't understand autism and that should have known better, so I don't by any stretch want to give the impression that I am looking at this through rose colored glasses. Arrogance and prejudice among those whose lives are not touched by autism is real and needs to be taken very seriously.
However, the compassion that I see from the growing majority of people for what people with autism and their families go through while living in a world that just does not work right for them, I believe, will not be largely changed by this.
Even if Cho's diagnosis is confirmed with complete certainty, with autism as pervasive as it is (1 in 150), and autistic killers as rare as they are (I can think of 2 reported cases) people will come to the conclusion that his psychopathology was in addition to autism.
Sure there will be a few people who make the leap that all autistics are potential shooters, but those people are probably looking for a reason to look down on those who are different from them, and would have found another way to do it if not for this. Those people would have been lost to the cause of understanding and respecting those with autism regardless.
I don't know what will come in the days ahead, but it seems to me that the fact that the media is not jumping on the autism piece of this story, and we are not seeing AUTISM! graphics floating across pictures of Cho's face, says that even the 24 hour news networks, who tend to suck the marrow out of every facet of a big story, don't even really think that this guys autism is why he killed.
The autism community is talking about this a lot more than the rest of the world.
Autism is pervasive and almost everyone knows someone with autism now. They see the tenderness and sincerity that can come out of our kids. They won't be fooled into thinking that this incident teaches that autistics are dangerous any more than it teaches that Asians are dangerous.
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