Autism Speaks: Is there a change afloat?
I read this article this evening.
At the very bottom, I saw this note:
_________________
So you know who just said that:
I am female, I am married
I have two children (one AS and one NT)
I have been diagnosed with Aspergers and MERLD
I have significant chronic medical conditions as well
we'll see.
Agreed
It seems more like a token thing really or a way to make those speaking against them alook bad
_________________
Autism Service Dogs - Everyday heroes
many people spend their live looking for a hero
My autism service dog IS my hero
http://autismdoggirl.blogspot.com/
http://stridersautismdogjourney.blogspot.com/
If there was real change they would stop calling it a disease!
_________________
Autism Service Dogs - Everyday heroes
many people spend their live looking for a hero
My autism service dog IS my hero
http://autismdoggirl.blogspot.com/
http://stridersautismdogjourney.blogspot.com/
definitely.
i mean it it that hard??
But here was Dr. Südhof who called it a disease. I don't think he has a real significant connection with Autism Speaks, so what he says may not be representative of the organizations views as a whole.
_________________
הייתי צוללת עכשיו למים
הכי, הכי עמוקים
לא לשמוע כלום
לא לדעת כלום
וזה הכל אהובי, זה הכל.
Okay. Please explain the controversy about this organization. It's a popular organization I've seen many college campus clubs affiliate with when they have "awareness" events. I also read a blog entry about the organization being filled with eugenicists, but that's about it.
I tried to reconnect with someone from my past who seemed active in this organization. We were discussing some conditions and the impact they have on one's ability to lead an autonomous life. She told me if it is known that someone has Asperger's Syndrome, that it would be unethical to date that person. Then she went on about employment, kids, etc. It made me feel uncomfortable, as she didn't seem to think it would be unethical to date someone with say, schizophrenia, a condition that could also very well affect employment, having kids, etc.
Here's what I recall of the 'controversy' with Autism
Speaks:
First of all, for an organization that claims or attempts to be the voice of autism, they have (Well, no longer have) anyone within the organization that is autistic themselves.
The organization uses the majority if its funding towards research into the cause of autism with the end result of finding a 'cure' or revealing a propensity for ASD in utero giving the would be parents the option if whether or not to carry the child to term.
Minimal funding is put towards providing aid or help towards individuals with autism or their families.
The organization has produced negative propaganda that depicts autism as a horrible disease that will destroy marriages and lives. In one particular documentary Autism Speaks put out a mother claims that she had been tempted to drive herself and her autistic daughter off of a bridge and the only thing that prevented this from happening was the thought that she had a 'normal' daughter to care for. All this was said while her autistic daughter was playing in the background.
Autism Speaks would prefer you to believe that autism is a condition that only exists in childhood. There is little to no support provided to adolescenta or adults on the spectrum.
Essentially the organization uses fearmongering to push their own agenda that autism is a disease of epidemic proportions that must ultimately be erradicated.
I'm sure others here could add more if I left anything out and provide you the links and sources for what I've listed. The acquaintance that you mentioned in your post also seems to personally embody everything that's wrong with Autism Speaks. So much ignorance exists in an organization claiming to be promoting 'awareness' when they are probably more at fault of spreading misinformation and proliferation of that general ignorance than anything else out there.
I wouldn't take this seriously at all. Autism Speaks' agenda hasn't changed over the years; they've only become more intentionally vague and misleading about it whilst looking into new ways of appeasing the more impressionable of their dissenters. The organisation has always directly opposed the values of the neurodiversity movement, and simply claiming to respect it when their actions have consistently shown that the opposite is true, doesn't change that in any way whatsoever. Stunts like the employment of John Elder Robison and the support provided to Alex Plank occured only to appease the more impressionable in our community by presenting the false image that Autistic people actually have a voice within the organisation when nothing could be further from the truth.
Perhaps one day, Autism Speaks really will change ... but I certainly wouldn't bet on it.
_________________
NOTE: I disown much of what I posted using this account. Peace.
yournamehere
Veteran
Joined: 22 Oct 2013
Gender: Male
Posts: 1,673
Location: Roaming 150 square miles somewhere in north america
They are trying to be agreeable. They have not been very widely accepted by the autism community at all. They try to change that with words and stuff. They cater to the parents of autistic children. It is a total NT non profit organization. If money was not involved it would not exist. It is a disease, however when it is said by them, most people interpret it like as if it were cancer, and it requires a cure. Part of their marketing ploy, is to get people to believe they are funding actual monies for an actual cure. They give people a complete lack of understanding of the actual disorder, in order to make it look as bad as they possibly can. A process called catastrophizing. For maximum effect. Granted some children are really in a difficult position, and that is the group they target. It would be no different to take a person with antisocial personality disorder who is at the bottom of their spectrum, totally low functioning, targeting those people, making people believe that it is all the same, and starting a non profit multi billion dollar organization in order to help people with that disease, and find a cure. They recently played a rope a dope tactic, with the whole neurodiverse thing, because people in the autistic community are getting really mad at the schemes, and tactics they have been producing. There are no autistics on their board of directors, or anywhere else as far as I know. they do not go out of their way to hire autistic people. There is no literature made by them about how intelligent, or successful autistic people can be. It is a put down in most respects for the autistic community.
_________________
Be like water making its way through cracks. Do not be assertive, but adjust to the object, and you shall find a way around or through it. If nothing within you stays rigid, outward things will disclose themselves.
Bruce Lee.
Perhaps one day, Autism Speaks really will change ... but I certainly wouldn't bet on it.
Just to be clear - Autism Speaks never employed me. I was a volunteer member of their Science Board. As for autistic people having a voice - I think the words of lower level staffers who approach our community are sincere. It's the top leadership that sees things differently. There I do not see any change, and that was why I resigned. I covered that in my letter last fall
EmeraldGreen
Toucan
Joined: 31 May 2013
Age: 55
Gender: Female
Posts: 250
Location: On a flight of fancy
Speaks:
First of all, for an organization that claims or attempts to be the voice of autism, they have (Well, no longer have) anyone within the organization that is autistic themselves.
The organization uses the majority if its funding towards research into the cause of autism with the end result of finding a 'cure' or revealing a propensity for ASD in utero giving the would be parents the option if whether or not to carry the child to term.
Minimal funding is put towards providing aid or help towards individuals with autism or their families.
The organization has produced negative propaganda that depicts autism as a horrible disease that will destroy marriages and lives. In one particular documentary Autism Speaks put out a mother claims that she had been tempted to drive herself and her autistic daughter off of a bridge and the only thing that prevented this from happening was the thought that she had a 'normal' daughter to care for. All this was said while her autistic daughter was playing in the background.
Autism Speaks would prefer you to believe that autism is a condition that only exists in childhood. There is little to no support provided to adolescenta or adults on the spectrum.
Essentially the organization uses fearmongering to push their own agenda that autism is a disease of epidemic proportions that must ultimately be erradicated.
I'm sure others here could add more if I left anything out and provide you the links and sources for what I've listed. The acquaintance that you mentioned in your post also seems to personally embody everything that's wrong with Autism Speaks. So much ignorance exists in an organization claiming to be promoting 'awareness' when they are probably more at fault of spreading misinformation and proliferation of that general ignorance than anything else out there.
A new non-profit should be started called "Autism Listens"! Anyone?
_________________
*Have Aspergers but undiagnosed
"Seems I'm not alone at being alone"
-The Police
https://www.youtube.com/watch?v=MbXWrmQW-OE
Ha. That's a great name.
I *am* happy about that disclaimer. Any steps in the right direction bring us closer.
_________________
So you know who just said that:
I am female, I am married
I have two children (one AS and one NT)
I have been diagnosed with Aspergers and MERLD
I have significant chronic medical conditions as well
i have read terrifying press released by autism speaks and unless they shut down completely and hire completely opposite people in terms of beliefs, they are not capable of changing.
it is very scary that they even exist and shows the complete lack of understanding / caring from the NTs who blindly follow advertising and propaganda.
_________________
Welcome to the inside of your head. It's kind of empty in here.
Ma-Ma is not the law. I am the law.
yournamehere
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Joined: 22 Oct 2013
Gender: Male
Posts: 1,673
Location: Roaming 150 square miles somewhere in north america
This is really bad. Someone is supposed to tell me I'm wrong, and I'm getting carried away. I cannot believe a nonprofit can be soo negative against the group of people they are trying to support, and still be soo popular, and profitable. Someone should really tell me that I'm wrong about what I said. I am just stating what appears to be obvious to me, I do not expect it to be true?
_________________
Be like water making its way through cracks. Do not be assertive, but adjust to the object, and you shall find a way around or through it. If nothing within you stays rigid, outward things will disclose themselves.
Bruce Lee.
Basically it says people's lives are ruined if their kid has autism. It needs to be "cured" because it's such horrific thing for parents to be subjected to having to care for an autistic child....like it's a plague. My parents are disgusted by the Autism Speaks videos about it they've seen.
AardvarkGoodSwimmer
Veteran
Joined: 26 Apr 2009
Age: 61
Gender: Male
Posts: 7,663
Location: Houston, Texas
And thanks for being decent when it came time to resign, and also candid with the rest of us as far as your reasons.
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