Should WrongPlanet sever all ties with Autism Speaks?

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glider18
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06 Oct 2014, 8:13 am

I just choose to ignore Autism Speaks. I will speak for myself for now.

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androbot01
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06 Oct 2014, 1:21 pm

ASPartOfMe wrote:

To me from the tone of voice of the announcer to the description of this entity lurking, waiting for the right time to strike, enjoying inflicting pain, ruining marriages etc. was meant to imply Autism as Satan. The mention of ?warriors? at the end was meant to imply ?Onward Christian Soldiers?. The word Satan or Satanic was not literally used because Autism Speaks does want to scare non Christians away. Religious Christians would get the non-literal message. Their exclusionary policies, the language used, the extreme intensity of their supporters is cult like.

I watched the "I Am Autism" video again because it was posted and I remembered how much it bothered me. It is worth noting that it is an old video and my understanding is that it wasn't widely used. And with good reason. When the narrator says "autism has no morality," and "autism doesn't know right from wrong," I can't help but wonder if he is talking about people with autism. Because to think autistic people have no sense of morality is far from the mark.

It is great that Autism Speaks does research into understanding autism, but their fear of us is what makes me nervous. I prefer not to think of myself as someone who needs to be fought against with warriors. Autism Speaks should put more effort into understanding our experience of reality than eradicating us.

B19
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03 Dec 2014, 5:43 pm

Yes and no.

Yes if they would engage in public debate with their critics in a civilised way and take some of the feedback from ASD people on board and amend their approach, their literature, their policy and their goals.

Read this:
http://www.science20.com/countering_tac ... ders-90395

No if they continue in their offensive, paternalistic, we-know-best-what-you-diseased-people-need, "you are inferior to us and always will be" stance.
....
Part of a poem by Goldie D Ivener:

"So the culture prevails
Dictating to us, who accept
With varying degrees of resistance
What is expected of us".

This expresses for me my despair at the failure to challenge the cultural myths and stereotypes of autism,
and allowing the myths to be reinforced daily by outfits such as Autism Speaks.

Jono
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16 Dec 2014, 6:15 pm

johnrobison wrote:

Just to clarify a couple things from my experience with both groups:

There is no current connection between Wrong Planet and Autism Speaks that I know of

Whatever you think of it, Autism Speaks is not a scam. It's an organization founded by two wealthy senior citizens who have a autistic grandson who is very disabled. They appear to hold a disease model of autism, and they seem committed to curing what they see is a scourge.

That seems to be the founder's view, as best I can tell. It has put them at odds with many autistic people, and many families, but they have found wide support among families whose children are severely disabled by autism. Few of those families participate here so it's not apparent on WP, but most of the AS revenue comes from individual donations, and those would not keep rolling in if a fairly large group of people did not subscribe to their viewpoint.

The confusing thing is that there are many progressive thinkers in the AS organization, and many of those have views aligned with folks here. But they don't make the decisions on where to spend the money AS raises, and that is the problem Too much of their money goes to what might be called "cure or prevention" related, and too little to helping our community actually build better lives.

But that's just my opinion. The supporters - and there are many, given the donation stream - see it differently

I remember when I first joined the AFF (Aspies for Freedom) forum, it was about the time when you joined the science board of Autism Speaks and when Alex got some sponsorship from them for Autism Talk TV. Most people over there, including the owner, Gareth Nelson, were so against autism speaks that in one thread I participated in, he even considered both you and Alex sell-outs by dealing with them. I actually tried defending both you and Alex by attempting to explain your reasoning in that thread regarding changing perceptions of people running Autism Speaks from the inside but Gareth replied saying that he was of the view that it would never work and that everything including the viewpoints of the most senior people in Autism Speaks won't change. It's sad that he was ultimately proven right.

Awilder
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17 Dec 2014, 7:51 pm

I'll state my point on this by saying that both WrongPlanet and AutismSpeaks don't share the same ideals nor the similar missions or protocols if this makes sense.. WP to me is here to help & serve the autistic community in a variety of ways via providing information as well as a means of allowing interaction between many autistic people all over the place.. AutismSpeaks tends to have this notion of trying to raise money for research in the means of finding the proverbial cure to autism as whole. Anyways, I'm with wp as it's more benevolent..

Sincerely,
Awilder

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mr_bigmouth_502
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17 Dec 2014, 8:23 pm

ABSOLUTELY. Auti$m $peak$ is EVIL! :evil:

Ganondox
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19 Dec 2014, 11:20 pm

Okay, after seeings dealing of numerous people with numerous different people with Autism Speaks, and read letter after letter from the same person, I've concluded that the problem with Autism Speaks is simple: it's Suzanne Wright. She has absolutely no empathy for autistic people, though maybe some poorly applied sympathy. Just look at this picture:

It looks like she is trying to freaking eat her grandson or something and is guarding him, while he looks like he just wants to get away her and is horrified, it looks like he is looking up to God to save him from her.] I read an account where someone who used to be on good terms with Autism Speaks went to party there and she tried to force her autistic daughter to look at her by grabbing her face, resulting in the obvious reaction. I'm going to quote the other daughter: “Doesn’t that lady run the biggest Autism charity in the world? I don’t get it. Does she even know anything at all about autism?"

If she would stop chaining the organization down, then maybe it might be able to change for good, but right now I see the same old story where some progressive within Autism Speaks tries to change their trajectory, then Suzanne says something idiotic and hateful and chases them away.

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androbot01
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19 Dec 2014, 11:23 pm

I see what you mean - she is cloying with him in the picture. You think she would know not to put her hand on him like that.

PlainsAspie
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19 Dec 2014, 11:36 pm

Their goal is to make him normal. In Sounding the Alarm, they showed his ABA therapist constantly trying to stop his hand and leg shaking. poor kid

androbot01
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19 Dec 2014, 11:44 pm

Ganondox wrote:

I read an account where someone who used to be on good terms with Autism Speaks went to party there and she tried to force her autistic daughter to look at her by grabbing her face, resulting in the obvious reaction.

If she grabbed my face and held my head to look at her when I was a kid, I likely would have punched her. If someone did it today I would for sure. lol

PlainsAspie wrote:

Their goal is to make him normal. In Sounding the Alarm, they showed his ABA therapist constantly trying to stop his hand and leg shaking. poor kid

How old is he now? Poor kid must be screwed up. He has to pretend these people are doing great things for people like him while they are tormenting him.

B19
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20 Dec 2014, 1:44 am

Publicity, ego and money - possibly the triad that feeds the personal values of a ? very narcissistic Suzanne Wright..

androbot01
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20 Dec 2014, 10:44 am

Here are the results of some google surfing regarding Autism Speaks:

Holiday Tips for Kids with Autism Spectrum Disorders - Autism Speaks link

Quote:

Prepare for the family environment. Will you be at grandma’s house? Another family member? Consider preparing an area for your child to play, or a space for your child to decompress if they become overwhelmed by the sensory stimulation. Encourage other children or adults to join your child.

How can the child possibly decompress if s/he is joined by other children. Urggg

#MSSNG video link

Quote:

Together we can conquer the unknown.

I'm still not sure if they are talking about autistic people when they say this. Especially when I see pictures like these from the MISSNG video:

Google Teams Up With A Controversial Research Group To Figure Out Autism - Business Insider link

Quote:

"The best research minds in the world are going to mine this database of DNA, so we can uncover and understand the various subtypes of autism," Liz Feld, president of Autism Speaks said in the group's press release. "Then, we can get to work developing customized treatments and therapies so we can improve the quality of life for so many people who need help."

The problem with this ^ is that the genes will be able to be identified before the ability to modify them is developed. With images like the above, women will be so scared when their unborn babies are identified that they will abort them. By the time the scientists figure out how to work with the genes there won't be any autistic people left.

I couldn't help but be reminded of this image of Norman Bates at the end of Psycho? Is there a similarity or is my paranoia kicking in?

B19
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20 Dec 2014, 1:15 pm

My impression, rightly or wrongly, is that the distasteful elements of Autism Speaks are largely driven by the Wrights themselves, rather than the organisation as a whole. Otherwise (I figure) John Robison would never have had anything to do with it (he has disassociated himself now). Well, as a senior myself, I am well aware that the obnoxious Wrights have a limited lifespan, so the themes that Autism Speaks have promoted in the past (that people on the spectrum are defectives that the world would be better off without) may be replaced by much more realistic themes, or at least a softening of their offensive statements and material. However the huge income stream from which the Wrights have benefited may affect their successors too, so there is the possibility of new but self-serving leadership in the future. It could go either way. Occasionally some of the research financed by AS does seem useful to me, though even the useful stuff is tainted by association and suspect for that reason. Also there are conflicts of interest when researchers accept large amounts of money from partisan providers. We like to think that all researchers are beyond corruption and self-interest, though that is simply not true in the real world.

androbot01
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20 Dec 2014, 1:49 pm

It bothers me that they use fear as a motivator. And it bothers me that people react to it with support for their cause. I guess they are tapping into a cultural fear of autism and they are reenforcing it. It's a vicious and successful cycle.

B19
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20 Dec 2014, 1:51 pm

Yes. They promote and perpetuate stigma, too, and that is the most unfortunate thing of all.

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