Stop Bashing Autism Speaks!

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Well guess what, you're with the real people now Tambourine. Srriv and I are not your dime a dozen autistic-accoding-to-an-online-questionnaire demagouges and we're going to pick apart what you say for what it is because it's fair. Saying what you believe you are isn't going to change that.

We're serious about doing the right thing, no matter what that is and who that is to and like any sane person our loyalty above all is to scrutinizing what needs to be scrutinized.

The statement the problem with self-advocacy is black and white thinking is a part and parcel of autism, is not necessarily a universal statement that all advocates have black and white thinking.

I understand that is the way you are interpreting it, but it is not the only way the statement can be interpreted.

Self-advocacy is an ideological term that refers to a civil rights movement.

If one were to state the problem with the civil rights movement for autistic people is black and white thinking which is part and parcel of autism, it wouldn't necessarily mean that every individual (advocate) who thought in black and white terms was part of the problem. For some advocates black and white thinking may not affect their communication in any observable significant way.

That's the way I interpreted the statement; a statement can be intepreted in more than one way. I understand you interpreted it a different way. If either you or I refused to accept that it could be interpreted in different ways, we would be exhibiting communication that is reflective of black and white thinking.

In other words, not being able to understand that there are gray areas in the English language. Words and phrases have more than one potential meaning, thus can be interpreted different ways

Clinically speaking impairment of abstract reasoning has been viewed as integral to autism. Part and parcel means something which is integral to something else. Not everyone with autism exhibits the same level of impairment with abstract reasoning or thinks in the same ways in terms of black and white thinking, which is part of difficulties with abstract reasoning.

People can adapt where black and white thinking is not as much of a problem in communication. I understand that I think in literal, concrete terms, however I make a conscious attempt to understand the gray areas of life and communicate them; I'm not always successful in doing this; it's part of the way I experience autism, so I adapt to it as well as I can.

Here is your actual statement stating I was projecting charactersitics on you:



My understanding from your statement was that you were talking about the thread about sensory integration, I was responding to that.

Now you are talking about the fact that I stated you might not necessarily have black and white thinking, and are telling me that suggests I don't think you have it.

I've accepted the fact that you stated you don't have this characteristic of autism in a previous thread, however many people that have it, some have no idea that there is anything unusual about the way they think, because it is the inherent way that their mind works, and all that they have ever known.

On this site, it is been expressed that black and white thinking is part of autism and has been openly discussed in many threads. Whether or not it is causing a problem in self advocacy is an opinion of Tambourine Man's.

It's not a stretch to suggest that black and white thinking is an integral part of autism. Others here have expressed that viewpoint, and it is a common view in clinical practice that impairments in abstract reasoning are an integral part of autism.

You are now asserting that Holman's depression was caused by the tragedies, it's possible, but you still won't know for sure what caused his depression unless he tells you.

From a biological standpoint autism hasn't been proven to cause depression, however some of the impairments from autism, do admittingly lead to depression from people's self reports here. It's part of what they mean when they state that depression is a co-morbid condition with Autism.

There are an unlimited number of reasons why an individual could get depressed. Chronic stress has been proven disrupt the balance of neurochemicals in the brain, leading to depression, because of the chemical imbalance. Some stress is unavoidable, so it is difficult for an individual to think themselves out of it, unless they have the ability to get away from the stressor.

Autism does add factors for the potential of chronic stress.

Impairments from Autism causes some individuals difficulty in social interaction, which can lead to isolation, and may result in depression. It doesn't require overt abuse; isolation and difficulty making friends, can be enough in itself.

Depression is as diverse in cause as Autism is; the scientific community does not fully understand it, nor does anyone else. Some people can't determine the causes for themselves or even fully understand what depression is.

When the tragedy of suicide results from chronic depression, or other psychological states of mind, it is a matter of opinion in severe cases whether or not one survived their autism, in each, individual case.

Some people don't survive Hurricanes, but it isn't always the Hurricane that is the direct cause of death.

The questions for the interview were developed by individuals on the AFF site, the interview was answered and posted. There is no way that Dana Marnane can change the wording of the interview, after it has been posted online, AFF has complete control of it.

The issue of the term epidemic and it's use as a part of the slogan on the website, wasn't part of the interview. It's a separate issue that has been brought to their attention that they are changing.

I brought it up here in this thread, another individual seconded the concern, Tambourine man sent the suggestion off to Dana Marname and she is willing to make the change, because people have expressed it was offensive, because it makes autism sound like a disease.

The whole process has been extremely transparent, all records of it are available online.

The thinking that autism speaks can do absolutely no right or no wrong, is indicative of black and white thinking, and a clear problem that led to chaos after autism speaks answered the interview. The record of that is clear. Some did concede and acknowledge the problem. Many people did seek middle ground, but some refused to have any part of a gray area.

I don't see purpose in criticizing objective positive changes autism speaks makes in acknowledging concerns in the autistic community. The questions in the interview belong to a number of individuals at AFF, and the suggestion to change the slogan, wasn't initiatied by Tambourine man, so he's not in this alone. There are other voices participating. Being part of a positive effort is a good thing.

I can't imagine how changing the epidemic slogan is going to negatively impact anyone.

While the words are objectionable, that is only part, something dropping a few words will not change.

Behind the words is the other, three million Americans of all ages that a media machine has chosen to lump together and to raise funds to continue denying their humanity, Civil Rights, and just stopping slander will not remove the damage done. We have been vilified for money.

Awareness, has produced a public perception that we have to live with even if it stopped today. The damage has been done.

Words are important, change Autistic to Jew, Black, Native American, Amish, those diseases, the epidemic they are causing among our pure people, and it gives a vision of what we have been living with.

Would the Klan be rehabilitated if they renounced the N word?

What about the children? Is a line from the Simpsons.

What about the money, is all I see.

Public perception is set, Geek Syndrom, Engineer's Disease, are a play on Autism Speaks Marketing. A lot of them are autistic. Autism Speaks has been seeking to Cure Technology. We must stop the Silicon Valley Epidemic.

New York of course knows everything, the rest of us are unthinking hicks, they saw Deliverance. I speak, but I am just someone from the mountains of south Louisiana. New York is the only highly evolved mental standard on Earth, according to New Yorkers. They are a Media Center!

I will admit Autism does have some problems, a minority will have little chance of living in the world. Nothing has changed for them.

The vast majority of the three million have lived in the world, got by, worked Silicon Valley, other IT, University, and like any group, we have some talented people. They all have that Autism Plague. They have for generations. I will admit they lack social skills, but as long as they stick to Math, Code, Patents, no one ever noticed.

Then along comes Autism Blabs, a New York Media Company, which has worked to destroy our business and social reputation, and make everyone Aware of our Tragic Faults, Failure as Humans, and Danger to the Community of people who watch Media.

I understand, they did it for a paycheck. Just like the rest of New York Media.

Results count, the only people who have been helped are Autism Speaks.

All Autistics, a wide range, millions, have been harmed.

It seems an unfair trade that we never consented to.

All of their Research seems to have dead ended, they are now looking outside of Autism to claim they are doing something. Fund raising is all.

Early childhood intervention is much older than Autism Speaks. It worked then, if funded. Autistics, like me, have said a lot more since the internet and keyboard came along. That was long before Autism Speaks. Al Gore gave us assisted speech.

Demonize three million, claim work done many years ago, misdirect Science for years, and suck up all of the money, about a Billion, that should have gone for doing something that Autistic People would support.

Changing words will not change the past, present, or future.

Defamation of Character does not go away, I doubt an equal amount of dollars and years of media could change it.

We got slandered, some New York Suits got a lot of money.

More than that, it makes Austism sound like something that should be feared, like the plague or cancer. Autism in itself is more a symptom than a disease. I truly hope that all people, especially the news media, will stop using the word epidemic.

It's not likely that many people successful in the world with autistic traits, have much concern over autism speaks,or their past negative portrayal of juvenile autistic cases that do require actual support and services for a lifetime. Certainly, not identifying with it on a personal basis.

Those successful folks are what they are, they've adapted, and are likely no better or worse off now since autism speaks, world planet, AFF, ASAN, all appeared on the scene around 2004-06. Many have no idea they have any criteria of Autism.

They could be called quiet, shy, or eccentric, but that's nothing new, introvert and eccentric awareness has probably been around longer than we can see evidence of in our historical past. Autism Speaks, isn't affecting their lives, in any measurable way, that can be evidenced.

It's not surprising because they were not the target audience that autism speaks originated to help; instead it was those juvenile cases, that require assistance and support. The target supporters are those that want to see these individuals helped.

It's their money that provided the support for the mission as stated by Autism Speaks. They wanted research for a cure, they got it, and now we understand a definitive one is not possible, instead understanding more about the complexities of autism because of that research.

I'm not sure how the organization could have anticipated that approximately 30 percent of the country likely has some autistic traits, and some might take offense to the negative portrayal of those more significantly impacted.

Looking at the records from Autistic individuals online that have voiced dissent against Autism Speaks portrayal of autism over the last 4 or 5 years, potentially a few thousand exist, but it is nothing compared to the millions of autistic individuals that have been diagnosed and potential Billions more in the world that have at least some autistic traits.

Never the less, Autism speaks is listening to a handful of voices now, and making a small change. A relatively small amount of constructive input has been provided, and a relatively small amount of output is the promised response, for now from Autism Speaks, in changing a slogan that some have taken offense to, on their website.

If we want change we can't expect the change we want unless we ask for it. Changing a slogan isn't much, but I don't see many other specific requests coming in.

It appears that dialogue is open for input, if one cares to provide it. For those that do, now is a good time to speak up. Some additional positive changes could happen; any positive change is good regardless of how insignificant it may seem.

Maybe when one change is made that people can actually see evidence of, they may feel that change is indeed possible, and their voices do make some difference.

Change has already happened within the organization, motivated by Autistic Voices that have dissented in the past. It is clear. Otherwise we might still be watching portrayals of Autism like the "I Am Autism Videos" and "Living with Autism Speaks Every Day". They hired an autistic individual; we are aware now that they are providing compensation to another. Chances are there may be more to come. Likely there are more we are not aware of, it's a privacy issue, they likely do not share.

I'm not sure the voice of dissent had anything to do with that part, it would likely have happened, as focus was drawn in the media towards Aspergers Syndrome. As the greater number of juveniles diagnosed with Autism move into the Adult population, that demographic will require more attention by all organizations that support those with Autism.

Not sure anyone here as has any real governmental influence, but Autism Speaks does. Probably more than any other organization, considering the power and influence associated with the organization.

Hopefully as they come to understand the negative impact on their level of the phrases and words they use, they will provide some influence for the government to change some of their language on autism as well.

The "combating Autism" act name has rubbed more than few people the wrong way, voicing their opinion on the internet.

It's a catchy phrase, makes it sound as important as "the war against terrorism"

Autistic people tend to take things literally, not understanding metaphors well behind language. This explains some of the divide in how some see the negative portrayals of autism presented in the past by Autism Speaks, as well as the present day language still used like epidemic and combating autism.

For the ten year old child that hears the phrase "combating autism", used by the President of the US, or other government official, if they understand they have autism, it's possible they could picture in their mind the government actually coming to harm them, when they hear that statement. Hopefully they would ask their parents about it, but some don't communicate very well.

It might sound silly to those that don't think literally, but for one who thinks literally and in pictures, what is pictured could stay with the child for years as they continue to hear the phrase.

When people come up with these phrases, they likely don't understand what it is like not to undertand metaphor. I doubt they consider this implication. People that think literally, would not likely be the ones coming up with the catchy phrases.

If they do come to this understanding of potential emotional harm to autistic children, and still use the phrases, they lack full consideration for individuals that are potentially affected this way that have autism.

To digress a little it reminds me of middle school and all the metaphorical language used as slang against me. I knew it was bad, they didn't say it kindly, but so much of it I never fully understood until years later.

It made the verbal abuse much duller that it would have been, if I had the "advantage" that kids do today to look up anything they might desire to know or see, with a few words in a google search.

The changes may not be as minor as you guys think. Progress doesn't happen overnight, but I can assure you that there are some interesting forces working behind the scenes.

It does no good to think in terms of "good" and "evil.". When we declare something to be evil, we are refusing to understand it. Constructive progress requires communication and understanding.

Some seem to think that attempting to open up a line of communication with this organization is a slippery slope that will eventually lead... to the eradication of us all?

I don't get it.

I get it.

Autism Speaks can lick my balls

Seconded.

Besides it's a conflict of interest to create open dialogue with an organisation you already had dealings with.

PROTIP: Always openly declare your credentials and connections BEFORE attempting something like this.

That would certainly explain why he got that interview so easily, as I doubt they would have contacted an independent source to interview them for this purpose.

I had no credentials or contacts prior to the interview. I dont think I have any credentials now. I was only diagnosed a few months ago.

A positive attitude and old fashioned hard work can get you far.

People have had a hard time believing that I'm just an autistic kid with a can-do attitude and a passion for writing.

That's all there is to it. I'm no one special. No one contacted me about an interview. I asked for an interview, completely on a whim, and an interview was granted.

No one has to believe me, but cynicism and pessimism are not the makers of progress.

Each of of us is capable of doing incredible things when we set our minds to it. Have a little faith... or not. I'm glad I do, and I'm happy with where it is taking me.

A Babylonian whorehouse? And such great progress it will be for you.

Dont you feel like one of those concentration camp Jews who became a prison guard to further his own ends?

Nazi are evil. Autism Speaks is a big bad Nazi. Naturally, Autism Speaks is evil.

Yep, there's a foolproof argument.

Last edited by Tambourine-Man on 24 Oct 2011, 3:07 am, edited 1 time in total.

Nope, no black and white thinking here! Have you seen those autism speaks death camps? Did you know Aspies can be sarcastic?

This is a ludicrous comparison, and a very offensive one. No, I'm not offended, but I'm sure holocaust survivors and the relatives of those lost would be shocked to see you belittling their pain and struggles.

The Nazi argument is too radical to warrant a calculated response. It is a nifty trick though. If you revert to blatant sensationalism, you win arguments by default. No one is going to bother arguing with a brick wall.

So yes, yes, yes, to all your questions. I agree completely.

You sound like a politician, who unfairly slanders me anti-Semitic, foolproof, black and white, offensive, unable to see sarcasm, blatant sensationalism, and also a brick wall......and other things ridiculous pulled out of your ass....

good luck with your 'progress', as you call it

But will you be in good company with money grubbing Autism Speaks and their smear campaigns against autistics?

I say this before I go:

If your heart is in the right place, and you are here to help autistics, may help come to your side to protect and assist you in your journey

If you are working in the dark against autistic people, may your efforts turn back on yourself, to again help and assist in your journey

Last edited by Surfman on 24 Oct 2011, 7:26 am, edited 1 time in total.

Newsflash!! Autism Speaks is now your friend!