Stop Bashing Autism Speaks!

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Yes, I do. But I try very hard not to because I have seen the way it affects people.

Nothing is black and white. No one is good or evil. "There is only one thing, do you see, that is terrifying in this world, and that is that everyone has their reasons." - Jean Renoir, "The Rules of the Game"

Studying art, cinema, history and philosophy has helped me to overcome my tendency towards black and white thinking. Believe it or not, so has being bullied and mistreated. I learned to understand that even mean spirited people have their reasons. That doesn't make their actions right, but it helps me to understand, forgive and move on.

When someone is rude or hateful to me, I try to understand what has inspired their behavior, and become their friend if I possibly can.

Dana has told me she will be making a change to the quote. I offered her some suggestions of what to say. I told her not to discuss spreading awareness to end an epidemic, but to create better services and support.

The cure strategy won't work for long. Autistic children are growing up and their parents are realizing that they will always be autistic. They just want to get them the support that they need to be healthy and happy. The Autism Speaks presentations I witnessed at the hackathon bore no relation to their past marketting. There are many new and fresh minds within Autism Speaks who are pushing for a different approach. I'm discussing this approach with them and trying to give them the autistic perspective.

Well, I find really off-putting and troubling that you're telling her what she should say. That really casts a lot of doubt on any future statements she might make, and even IMO casts suspicion on the integrity of the original interview. Yeesh.

Instead of telling Autism Speaks what to say, how about they actually make what you say the truth--that they are focusing on better services and supports?!

Rhetoric is meaningless without action.

Also, truly engaging in a dialogue with autistic critics would mean actually listening to what we're saying, not simply say what people want to hear at the urging of someone else. How anyone can think this is true dialogue and change is unfathomable to me. Wow.

Baby steps don't get you there quickly, but if you take enough of them you'll get there all the same.

A step in the right direction is always a right step.

Don't ridicule the actions of those who want to effect positive change, no matter how small.

He didn't and I didn't suggest he could speak for all autistics, you suggested a person could if their assertion was backed up by facts; I pointed out his general statement about black and white thinking being part of autism was supported by facts, but didn't necessarily apply to you.

My statement that black and white thinking does not necessarily apply to you or all people with autism, neither proves or disproves his statement that black and white thinking is the problem with self-advocacy; he didn't state that black and white thinking was a problem with all self-advocates, he said it was a problem with self-advocacy and part and parcel of autism.

I never stated you had black and white thinking, I suggested it was possible you had a symptom of autism; you stated you didn't and I accepted it. If I stated you definitely had it and you said you didn't, that might be discrediting you, but I only suggested it was possible.

There isn't a great deal of research on ASD's and suicide but recent research suggests that among adult patients affected by ASD's and attending psychiatric services suicide is frequent.

It's not clear at this point if the risk is related with ASD's or psychotic symptoms, but it is clear that they don't survive their autism. Technically autism didn't kill these individuals, but if the higher suicide rate is linked to ASD's, there is a higher statistical risk that individuals with ASD's will not survive autism because of the risk of suicide.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3089029/





The individuals in this study did have severe cases of ASD's, according to the description in the study.

You said the guy in the video needs better treatment, I suggested autism speaks research may lead to improved treatment for the guy. I didn't say anything about curing his autism.

You didn't like it when I suggested you might have a symptom of autism, and here you state it is a fact you know very well that abuse caused Tambourine Man's depression.

Maybe you didn't read the thread when he talked about all the tragedies that occured to his family members, how do you know that wasn't the source of his depression? Only he knows that, neither you or I know for sure what caused it.

People have been asking for autistic input into what the priorities of the organization should be, and have complained about the rhetoric the organization uses.

He is providing that input, and they are going to respond not necessarily specific to his suggestion, but a change away from the rhetoric that is seen as offensive.

There is no objective reason why a suggestion of a change in priority from autism is an epidemic to create better services and support, should lend criticism to the new rhetoric she uses in her comment.

It seems to me the option to provide a suggestion, is better than no option to provide input into changes that occur, no matter how small they may be.

While the change in rhetoric may be meaningless to you, it has bothered other people, that will be glad to see it change.

Many people have expressed dissatisfaction that the epidemic statement is on the website, because it makes autism sound like a disease that can be ended. Tambourine man provided that information to the individual that could make the change and she has responded in kind willing to make the change.

It is a small change but it is true dialogue as evidenced in the record here in this thread, and change that has been asked for.

When the change that has been asked for, to remove the epidemic statement is accomplished that will be true change that has been asked for in the dialogue evidenced in this thread.

The best case scenario would be if they take his suggestion and take action on this new positive rhetoric that he suggests.

Again, at this point we have no idea, what the change will be, if they are not actually going to make better services and support a priority at this time, it would not be logical to set it as their goal.

You're missing the point. I said he can't talk about ALL people of a certain group unless it was backed up by fact. He was talking about ALL self-advocates. You said that this trait DIDN'T apply to me yourself. So therefore his assertion WAS WRONG. Therefore he didn't do what I said he could and you shouldn't try to portray that I said what he did was acceptable. Somebody doesn't have to say that they're going to do something. They just do it, and he made a broad-brush swipe at self-advocates, saying they all think this way.


*facepalms* You don't get it do you? That's exactly the point. Black and white thinking is not part and parcel with autism. I know that for a truth. You said yourself when you said: Black and White thinking is a common characteristic of Autism, that is no secret, doesn't mean it applies to you as individual though.
You said common and said it is not universal. So my gripe with him was correct by your own admission. I said it was absolutely uncalled for him to say it was universal and you said so yourself.



You didn't suggest it at all. You said this:Black and White thinking is a common characteristic of Autism, that is no secret, doesn't mean it applies to you as individual though.
That suggests that you thought I didn't think in black and white.
The fact is that you're just spinning in to a speculation fallacy anyways. Speculation fallacy is where you speculate, suggest as it were, characteristics of someone else that make them sound less credible. Black and white thinking is an example of this.



That isn't the point I was making. I was saying that I don't and a lot of people don't need cure. I didn't say anything about autism speaks not being good at care.


Yeah the problem with speculation fallacy is that it's used to discredit another's argument by saying that their reasoning is impaired by some characteristic. I didn't say or suggest that Hollman's drug use impaired his argumentation. Hollman's black and white thinking suggestion does do that.

But don't worry, your point only strengthens my argument.
Hollman's depression wasn't to do with autism.
It was to do with extraneous tragedies, which only supports my view that Holman's point about people not surviving their autism being false.

Last edited by Gedrene on 23 Oct 2011, 9:44 am, edited 1 time in total.

It's only a small change because you say so. Any protrayal of Autism as a spreading epidemic is beyond reason. it is furthermore unscientific by your own admission because autism is so badly defined for a start.

srriv wasn't ridiculing anyone. Don't accuse srriv of doing so. Srriv was saying that rhetoric is meaningless without action. That isn't mocking anyone.

And this is the point. I want to see proof of this Tambourine. THe proof of the changes would be nice.

Yes people change and the organisation has changed.

Peter Bell has changed too and it is good you point this out Tambourine Man

He has come miles away from these times

http://scienceblogs.com/insolence/2009/ ... tin_in.php

Just as our organisation has changed to one which no longer shus the pharmaceutical companies as the devil for hiding our children behind leaden shells, we now work with the pharmaceutical companies for the benefit of Autistic people.
Yes a lot of our money goes into research and paying our employees including Tambourine Man for his brilliant articles but let's not forget the investment made into this site and in scholarships for people researching in the field. We are not ogres and really able to change and grow and bring awareness into a community that is unaware of Autism.
As Tambourine man said himself
"Closed mouths do not get fed" We are feeding the Autism community in ways small and large and this ought to be recgnised

Autism Speaks-fan...

Ok, never mind. Not even going to go there.

Critics and detractors are bound to appear whenever change is attempted. The first one through the door always gets bloodied.

Be a part of the solution, not a part of the problem.

Thank you to everyone who continues to be a part of the solution. Your efforts are REAL, and little by little you WILL see positive change.

People have been saying I couldn't deliver all along. I've been accused of not being a writer, of not being autistic, of being the autistic messiah, a media marketing strategist, a drug addict, an optimistic puppy...

Would conducting an interview result in such accusations on an ADHD forum? If black and white thinking were not characteristic of autism, some of those accusations may have been a little less extreme, neither idealizing nor demonizing me.

The truth is, I'm just a passionate kid determined to make some changes.

Tambourine-man, your desire to make changes is admirable, but I have serious questions about the ethics of what you are doing. I've done some journalistic and historical writing myself, and it's a cardinal rule of journalism that you do not give the subjects control over the final product. Your comments lead me to believe that you are not abiding by this principal. I'm even getting the impression that you may be allowing Dana to change some of her words after the interview was already published online. (!) That's just not good practice, and it rather suggests that you are serving a particular individual/viewpoint rather than attempting to represent the truth as best you can. Who do you serve here? What was the purpose of posting the original interview?

If you think that outlandish and harsh accusations are unheard of in non-autistic forums, I suggest you look around online. There is plenty of conflict and extremism elsewhere. Moreover, your continued tendency to reduce your critics' objections to "black and white thinking," or a symptom of autism, is itself an ad hominem tactic that inhibits true discussion of the issues.

If you want to act as a kind of conduit between Autism Speaks and autistic people, that may be a good idea, but doing it well requires that you listen to both sides and not act as a kind of spokesperson for one.

Quiet. This is thundering demagougery. Why don't you make actual complaints rather than hide under a transparent cloak and rant?