My comment to Autism Speaks

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I really find that group pathetic. I posted this on their Facebook wall a few minutes ago:

Is that a good argument?

Bets on whenever or not that comment is now deleted.

Probably. I can't tell whether the people who run that group are trying to get money and fame by fooling people, or if they are just stupid.

Hell yeah! Autism speaks are a truely shameful organization in my opinion.

Leifanator Wrote:

This is the way I immediately felt when I first heard about them, but there are signs they might be changing, lets wait and see if these changes are genuine and not just PR.

Leifanator Wrote:


This is the problem, to what extent has their search for a cure been genuine and misguided, and to what extent has it been fake and exploitative? We just don't know, I don't like the salaries that I've heard the bosses pay themselves banding around. (Apparently around 500k per year) is this appropriate for the workers of a "charity"?

If they respond to it in an unjustified way then of course it will show them up. I'd like to see the thread so I can see what you were up against.

Changes are being made (thank God). There are some very nice, passionate and dedicated people who are trying to make a change.

They are employing autistic people, allowing us to speak up on their website, and using more of their money for programs like Advocating for Adults With Autism.

They have given me a platform on their website and allowed me to speak out about the meaninglessness of a blanket cure, the diversity of the spectrum, and the need for services and support, without censoring me.

They are sponsoring autism talk tv. They have listened to our protests and removed certain offensive words from their advertising.

All of this came about because certain people were willing to make polite suggestions and work with them.

The bashing isn't effective and really only discredits self-advocates. We need to influence them, not try and destroy them - that won't happen.

Reading over the wall, it's pretty much a place where people are supporting each other, a few comments from the organization, but mostly a place for support. I saw your comment there.

Stating Autism Speaks is a cult, could be seen as offensive by anyone looking at your comment going there for support, so it might be removed, so that others won't be offended, but more likely will be ignored. Calling the organization names particularly when they are also in reference to the supporters, is an attack not a good argument.

Example of a constructive argument, instead of an offensive one, with your same ideas:



Chances are if you write a comment that sounds like criticism, rather than an attack, it will stay on the board, and you may get some responses from the other people there that are looking for support, but autism speaks normally doesn't respond directly to people's questions there, unless it is in response to one of their public service announcements.

If you want answers from the actual organization, the best way to do it would be to email the public relations department of the organization directly, with your questions.

What bashing? Seems you're airing ideas a lot. Haveyou got back to me over where you criticized autism speaks on their website yet? I'd like to see those comments.

Bashing Autism Speaks = "You are not an helpful organization, you are a cult."

Good statement if one wants to bash autism speaks, but not an effective one if one is seeking answers and change.

Yes, I did. Over on the the stop bashing thread.

Very good point. A lot of people can't seem to wrap their heads around the idea that I can disagree with some of Autism Speaks actions, and offer criticism, without outright condemning them and demanding their destruction.

Here are examples of statements which only make self-advocates look bad and will be entirely ignored by the general public...

Autism Speaks is evil.

Autism Speaks are Nazis.

Autism Speaks hates autistic people and wants them all dead.

Autism Speaks can lick my balls.

We need to destroy Autism Speaks.

Etc...


Statements like these make NTs laugh. They think, "Why those uppity, ungrateful ret*ds!" Sad but true.

My experience with the general NT population has revealed them to have a very shallow understanding of autism, believing it to be synonymous with mental retardation and Down Syndrome. Not ALL NTs think this way, but I have noticed that it often seems to be the case.

Incoherent insults and petty name calling will not change the mind of a general population that seems to regard autism as a disease. You have to demonstrate otherwise. This what I try to do with my writing. I try to humanize the autistic experience as best I can.

Constructive criticism will take you much further than name calling, which no one takes seriously.

Last edited by Tambourine-Man on 05 Nov 2011, 5:29 pm, edited 2 times in total.

Gedrene, here is a little example...

They each begin with this statement...

John Scott Holman struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance.

I even discuss the cure controversy in Part III...

I thanked Shih and wandered off to abduct someone important for our next interview.  Luckily, I was distracted by a group discussion in the dining area.  Marc Sirkin, Peter Bell, and Steve Silberman were gathered together in heated debate.

“Do I hear opinions?” I said, plopping into a nearby seat.  “I’m sure you’re all wrong.”

“Nice to see you again,” Steve said.  “We’ve been discussing autistic self-advocacy.”

“Uh oh,” I groaned.  “The last thing we need is a pitchfork wielding mob parading through Alex’s shots.”

Marc laughed.  “It is a controversial subject.”

“Has anyone seen my soapbox?” I said, looking about.

“Huh?”

“Oh, I’m already standing on it… Black and white thinking is a recognized symptom, and one which casts a troubling shadow over autism politics. We’re not characters in some autistic version of Star Wars.  This isn’t about heroes and villains… though I wouldn’t mind seeing Peter here cross light sabers with Ari Ne’eman.”

“You’re a storm trooper… but your scene was cut.”

“Autism Speaks has made mistakes.  We’re all learning.  Autism was poorly understood when I was a kid.  I lived 24 years without a diagnosis.  Awareness is spreading.  It is only natural to see more people being diagnosed.  We finally know what to look for.”

“Aren’t you offended by the notion of a cure?” Steve asked.

“I don’t know what that means, and I’ll give five bucks to anyone who can offer a simple explanation.”

No one made a sound.

“Anyone?  Mark?   Bueller…?  Bueller…?”

I’d have to remember this little challenge the next time Alex needed a quiet set.

“Good, I’m broke anyway. Autistic pride is great, but we need to remember those who can’t advocate for themselves, or communicate at all.  The promise of a cure brings hope to many devastated families.”

“False hope?” Steve asked.

“Maybe, but people need hope.  More importantly, they are willing to pay for it.  We may never find a cure, but there is no telling what will be discovered along the way.  Knowledge is a powerful asset.  I’m not opposed to genetic research, but I’d like to see a greater emphasis on services and support – that’s why I’m sitting here with you fine people!”

The conversation continued for some time, everyone offering valuable insights.  I realized, quite suddenly, that precedents were being broken all around me.  For far too long, the autistic community has been relegated to either side of a massive, ideological divide.  In that moment, we were unknowingly constructing a bridge.  This was truly an unlikely meeting of minds, and a rare dialogue.

---

These were my opinions long before I had spoken to anyone at Autism Speaks. They are my opinions today. I have refused to praise their every endeavor. On their own website I talk about the impossibility of a cure and write of the need for services, support, and acceptance. That message reaches far more people through their website than it would anywhere else.

Here, I clearly indicate that the cure is a marketing scheme to generate money for valuable research, then goon to say that more of this money needs to be going to services and support! The published this on their own website!

I will go with the largest platform and the widest audience, but my message remains the same. It is a message of moderation and cooperation in a an all too divided community. It always has been.

The people who constantly try to justify dialogue and fairness have either criticized autistics with black and white and made up terms or have used hilarious statisics and high redefinition in order to smudge through arguments whilst they smarmily make shadowed criticism of those who aren't turkeys voting for christmas.

Why don't you actually ask for proof of what sort of thing the person was dealing with before you obstrepperously decide to say that calling autism speaks a cult was unjustified?

Shows how little you know about your own kind when all you do is justify bending your neck because they don't like it if they don't act your way. Furthermore the OP's post was a response that I want to see clarified as to whether the word cult was justified.

I don't need your association fallacies canvassing what other people who say in order to relate to what this person said. That is a sign of black and white thinking,a symptom I think of NTs rather than autistics when I actually think about it.


Not lying is better than being euphemistic.

Look, can you give me a link or not?


Your actions have not been borne out at all by this sentence.