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I AM CONDUCTING AN INTERVIEW WITH AUTISM SPEAKS

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AlanTuring
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20 Sep 2011, 9:49 pm

By the way, Tambourine-Man, happy birthday!

I have let a lot of my frustration and anger with Autism Speaks spill out onto you.

I doubt that you deserve much or any of it.

I think you have been used, but I also think you are, as a young man, trying things out and trying to make a mark in the world. I know you want to be a writer and to support autism advocacy. I question any involvement with Autism Speaks, but that is me. You will have to find this out on your own.

Have a wonderful birthday!


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AlanTuring
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20 Sep 2011, 9:52 pm

AardvarkGoodSwimmer - Good post.

I tend to be an outsider.

I also have a lot in common with Don Quixote.


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20 Sep 2011, 10:15 pm

Zeraeph wrote:
AlanTuring wrote:

Nonsense.

Your overly-generous interpretation is unbelievably naive.

My interpretation is that Autism Speaks is lying.

He spoke to a PR hack. Nothing that they say is to be believed.

Nah... it has to be sincere to be a real apology.

I don't accept their 'apology' as sincere, think it is utterly self-serving, and regard them as demonstrated liars.

They are playing word games. They have to say something, because it is increasingly evident that a real cure for autism is not in the cards, and because they know many of us won't accept their goal of autist-prevention.

I don't accept that this is their real position, and I'd bet that they'll say other things to other audiences.

I do not accept their statements as truth - I think they will say whatever they think they need to go get us off their backs.

Do not trust Autism Speaks.

aghogday wrote:
The only thing I noticed, that I think might disappoint some, was that they did not respond to the question of why autistic people might disagree with the research that they outlined in their response. The research all seemed of specific benefit to Autistic people, so perhaps that was why there was no response there.

Nice apologetics on their behalf.

I would not make any generous assumptions regarding their motives.

I'm quite sure they have some people monitoring the internet, including this site.

I'm afraid he has allowed himself to be used by a nasty organization to the detriment of autists everywhere.


Sad to say...all of the above works for me...always has, always will...
:(

But I want to do something nice for John Holman's birthday instead anyway:

[youtube]http://www.youtube.com/watch?v=oVuVXqWfQeE[/youtube]

Happy Birthday kid...and don't worry...once you hack the first quarter century the rest is mostly down hill. :D


This was icing on the cake of a very big day.

Thanks.

I'm nobody special, just a song a dance man who perhaps went a little electric. Was it as sell out? I have no idea. I have my opinions on all these matters and will stick by them no matter what. It doesn't do much good to shout opinions that don't get noticed.

I had some neat offers from some cool people and I got a little attention. Maybe people will start listening to me, maybe not. It was worth a shot.

As for Autism Speak's true motives? They want to make money by helping autistics. As I said, they will go with whatever is profitable. This isn't Star Wars...it is America. They aren't the Sith, they are a business. If my voice can, in any way, help influence their conception of "profitable" then I have done a great thing. If not, then at least I have tried.



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20 Sep 2011, 10:18 pm

aghogday - I want to say more on your request for evidence of claims that Autism Speaks has told lies, has deliberately mislead people, is not an effective advocate for autists or for autism, and spends far too little of the money that it raises on behalf of autism effectively.

A great deal of evidence, not all of which is solid, has been posted here on WP. You have consistently dismissed it without persuasively refuting most of it.

A great many other people with autism, people without autism, journalists, and others have raised serious questions about what Autism Speaks does and how it does it.

You are quite right to ask for evidence.

It would be wrong, however, for me and others to be silent or tentative on what we think Autism Speaks has been doing until you are satisfied that sufficient and persuasive evidence has been brought to your attention. I do not think that you ever could be persuaded of claims against Autism Speaks.

I will undertake to investigate Autism Speaks, the claims against it, and the evidence that others have provided. I will periodically share here what I find that I think is of value. Nothing that Autism Speaks says will be trusted.

I have already explained that Autism Speaks' history of support for Wakefield and his anti-vaccine garbage is sufficient to dismiss the organization as being scientifically based or intellectually honest. Their support for the fraudulent Wakefield, while less uniform, continues to this day - they have listed his books on their recommended reading list and have provided him speaking opportunities at their events.

Wakefield, through his self-serving, money-seeking, and fraudulent assertion that vaccines cause autism, has done enormous damage to all vaccination efforts and serious damage to efforts to make the lives of autists better. I think that what Wakefield has done will result in the loss of life and in the increase of avoidable diseases, all so he could make a buck.

Autism Speaks supported this man and his 'work' and, even though they now have backed away from much of that endorsement (too little, too late), they still have yet to unambiguously condemn him and to emphatically state that he and his ideas have no place in our world.

This is enough for me to oppose Autism Speaks. You have a different take on it. We seriously disagree.


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20 Sep 2011, 11:55 pm

AlanTuring wrote:
aghogday - I want to say more on your request for evidence of claims that Autism Speaks has told lies, has deliberately mislead people, is not an effective advocate for autists or for autism, and spends far too little of the money that it raises on behalf of autism effectively.

A great deal of evidence, not all of which is solid, has been posted here on WP. You have consistently dismissed it without persuasively refuting most of it.

A great many other people with autism, people without autism, journalists, and others have raised serious questions about what Autism Speaks does and how it does it.

You are quite right to ask for evidence.

It would be wrong, however, for me and others to be silent or tentative on what we think Autism Speaks has been doing until you are satisfied that sufficient and persuasive evidence has been brought to your attention. I do not think that you ever could be persuaded of claims against Autism Speaks.

I will undertake to investigate Autism Speaks, the claims against it, and the evidence that others have provided. I will periodically share here what I find that I think is of value. Nothing that Autism Speaks says will be trusted.

I have already explained that Autism Speaks' history of support for Wakefield and his anti-vaccine garbage is sufficient to dismiss the organization as being scientifically based or intellectually honest. Their support for the fraudulent Wakefield, while less uniform, continues to this day - they have listed his books on their recommended reading list and have provided him speaking opportunities at their events.

Wakefield, through his self-serving, money-seeking, and fraudulent assertion that vaccines cause autism, has done enormous damage to all vaccination efforts and serious damage to efforts to make the lives of autists better. I think that what Wakefield has done will result in the loss of life and in the increase of avoidable diseases, all so he could make a buck.

Autism Speaks supported this man and his 'work' and, even though they now have backed away from much of that endorsement (too little, too late), they still have yet to unambiguously condemn him and to emphatically state that he and his ideas have no place in our world.

This is enough for me to oppose Autism Speaks. You have a different take on it. We seriously disagree.


My only two disagreements with your statement that warranted evidence was that you stated the individual that participated in the interview was a PR Hack not to be believed, and that the people that work for Autism Speaks are demonstrated liars. There is no evidence of it in the record, to my knowledge, you haven't presented it, so it's not fair to personally attack anyone's personal character before you find evidence to support it. If you find it and present it I will stand corrected.

I didn't ask you for evidence of "whether or not Autism Speaks has deliberately mislead people, is not an effective advocate for autists or for autism, and spends far too little of the money that it raises on behalf of autism effectively" as you suggest I did.

That is your subjective opinion, you have a right to that, there is no evidence that is possible that could change your opinion on that, as far as I know, because you suggest that nothing autism speaks says is to be believed, as far as I can see you have closed your mind to any other possibility, and that is your business.

I don't agree that Autism Speaks is deliberately misleading people, but I don't think they have effectively represented or supported the needs of all autistic people, have identified this many times in the past, and have identified many times that a small percentage of their funds are provided for direct services for Autistic people.

They seem to be open to improvement in these areas, as stated before much of it remains to be seen, as far as improvement in results.

My strong disagreement with you on this part would be an assertion that they do nothing for autistic people; I don't see that as a reasonable assertion; that part is easily refutable by any logical standard.

Tambourine Man's statement about Autism Speaks is reasonable; this is America, and they are operating within the norm of any other American Charitable Organization.

There is plenty to disagree with, but no evidence that they are a dark force of evil.

They are a non-profit organization, but in raising funds for their mission, the same general business principles accepted as legal here in the US apply to that effort.



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21 Sep 2011, 5:35 am

Tambourine-Man wrote:
Was it as sell out? I have no idea. I have my opinions on all these matters and will stick by them no matter what. It doesn't do much good to shout opinions that don't get noticed.


It is absolutely NEVER a "sell out" just to "go know" - even if other people know how it is going to turn out, that is not the same as finding out for yourself. I would be the last person to encourage the practice of taking other people's word for it.

Tambourine-Man wrote:
I had some neat offers from some cool people and I got a little attention. Maybe people will start listening to me, maybe not. It was worth a shot.


I was hoping you would get that much out of it, your writing really is very, VERY good, and I am not the type of person who would say that just to be polite.

Tambourine-Man wrote:
As for Autism Speak's true motives? They want to make money by helping autistics. As I said, they will go with whatever is profitable. This isn't Star Wars...it is America. They aren't the Sith, they are a business. If my voice can, in any way, help influence their conception of "profitable" then I have done a great thing. If not, then at least I have tried.


It's not quite that simple John and where charities are concerned it never is. It always has a lot more to do with control, power and politics than helping anyone. A little lower down the ladder it has a lot to do with status too. (That's where Quadratura's, frankly offensive and degrading, experience of an Autism Speaks University chapter comes from).

All of this feeds into the fundamental NT need to feel "part of" something for comfort, and perhaps less creditably, the equal need to feel superior and bountiful to someone for reassurance.

The bottom line is that charities often could not care less what happens to those they affect to help as long as they are ticking all the other boxes.



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21 Sep 2011, 5:36 am

AardvarkGoodSwimmer wrote:
Whether to work inside s system or outside is a major question. And I tend to think the answer is, a little bit of both? Sometimes one, sometimes the other. Being aware of the limitations of both ways.

==================

I've been reading the answers

Quote:
http://www.aspiesforfreedom.com/index.php (scrolling about 1/3 the way down)
"3. . . . One of the things that is so challenging about autism is the fact that there’s so much variation in the way autism is expressed in people. Some individuals can have a productive and creative life, and they aren’t looking for a cure. They’re interested in being accepted and getting access to services to help them adapt to the world with their special skills. At the other end, there are individuals severely affected who have significant medical conditions, like GI distress and have never spoken. For those individuals, the prospect of a cure for autism is really important because to that person “cure” means being able to communicate and free of pain. That results in a lot of different perspectives of where our priorities should be. . . "


And I've got to tell you, I'm just not that impressed.

This thing is stiff, formalistic, corporate throughout. And even this part " . . . to help them adapt to the world . . . " Well, excuse me, but I'd also like the world to adapt to me. That is, I think we can take a page from the movement for civil rights for gay and lesbian persons, or any of a number of other movements for civil and human rights. We can help the world become a more open place and accept a broader range of what is considered 'normal.' And we can also build communities, organizations, activities, events, that are more accepting within the world. For example, I'd like to see us start productive businesses with the purpose of making money and creating good jobs. Not just any jobs, but good jobs (even fully aware that 80% of new businesses fail, straight up, that's the baseline, often because fixed expenses eat you alive before sales really come in).


I think support groups like WP, AFF, and ASAN are a requirement to encourage self esteem and motivate efforts among those on the spectrum that can achieve these goals. On the other hand the US Government, Autism Speaks and other organizations are providing the funding, in hopes of allowing others on the spectrum an opportunity to reach these areas of fulfillment in life, that is also seen as a requirement. The spectrum is too large, needs and ideologies too diverse, to satisfy the wants and needs of all.

For those that need actual support that requires a great deal of financial backing, the organizations, including the government that have that funding, are the only potential avenues for that support.

For those that need that actual support, that have no other voice but their own, it is up to them whether or not they want to provide input to organizations that have the resources that the need is there and an important requirement that should be fulfilled.

What Tambourine Man did is attempt to provide a better bridge for the autistic community as a whole, specifically in regard to Autism Speaks. Some have no need for the bridge, others do, while a few desire to eliminate the bridge, as well as any potential resource at the other end of the bridge as well.



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21 Sep 2011, 5:53 am

AlanTuring wrote:
It would be wrong, however, for me and others to be silent or tentative on what we think Autism Speaks has been doing until you are satisfied that sufficient and persuasive evidence has been brought to your attention. I do not think that you ever could be persuaded of claims against Autism Speaks.


I think that is absolutely the bottom line here, except to add that there is equally no point in waiting for Autism Speaks to openly admit the truth and offer redress for all they have done before challenging them...because, frankly, they will never do that.



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21 Sep 2011, 7:34 am

Zeraeph wrote:
AlanTuring wrote:
It would be wrong, however, for me and others to be silent or tentative on what we think Autism Speaks has been doing until you are satisfied that sufficient and persuasive evidence has been brought to your attention. I do not think that you ever could be persuaded of claims against Autism Speaks.


I think that is absolutely the bottom line here, except to add that there is equally no point in waiting for Autism Speaks to openly admit the truth and offer redress for all they have done before challenging them...because, frankly, they will never do that.


Indeed, this coming from the woman who said she was leaving the forum four times and said she just needed to respond 'to this last message' twice. I don't think you're in a position to start calling other people liars.



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21 Sep 2011, 8:29 am

Gedrene wrote:
Indeed, this coming from the woman who said she was leaving the forum four times and said she just needed to respond 'to this last message' twice. I don't think you're in a position to start calling other people liars.

Please conduct your feud with Zeraeph, if you must at all, through PMs.

Your post was utterly off topic and a distraction.

I also think that it was uncalled for.

I have affection and some agreement with both of you, and it makes me sick to read this stuff. I very much want her to stay, and I want you to simply stop talking to her if that is the best that you can do.

If you have issues with my having said so, please reply by PM.


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21 Sep 2011, 8:42 am

AlanTuring wrote:
Gedrene wrote:
Indeed, this coming from the woman who said she was leaving the forum four times and said she just needed to respond 'to this last message' twice. I don't think you're in a position to start calling other people liars.

Please conduct your feud with Zeraeph, if you must at all, through PMs.

Your post was utterly off topic and a distraction.

I also think that it was uncalled for.

I have affection and some agreement with both of you, and it makes me sick to read this stuff. I very much want her to stay, and I want you to simply stop talking to her if that is the best that you can do.

If you have issues with my having said so, please reply by PM.


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21 Sep 2011, 8:42 am

AlanTuring wrote:
Gedrene wrote:
Indeed, this coming from the woman who said she was leaving the forum four times and said she just needed to respond 'to this last message' twice. I don't think you're in a position to start calling other people liars.

Please conduct your feud with Zeraeph, if you must at all, through PMs.

Your post was utterly off topic and a distraction.

I also think that it was uncalled for.

I have affection and some agreement with both of you, and it makes me sick to read this stuff. I very much want her to stay, and I want you to simply stop talking to her if that is the best that you can do.

If you have issues with my having said so, please reply by PM.


I think your attempt to turn this in to a personal matter is uncalled for, for the reason that I would say this to anyone else who did the same exact thing. Any attempt by people to say that anything I have ever said to anyone else can be characterized as part of a feud is laughable because all it it shows is that people are presuming that I would somehow act any different to any other person in the same circumstances.

If you said that you were going to leave the forum four times and never left and then in another post called someone a liar I would reply with the very same thing. That you would consider what someone believes as more important in determining what you think about them then their basic principles I think most people would call that spineless.

Saying that someone is what they are is never off-topic when it is a direct and relevant reply to their ill-founded complaints of other people. If you want to try and argue that pointing out blatant hypocrisy is wrong then I wonder do you have a problem with people making incisive criticism?



Last edited by Gedrene on 21 Sep 2011, 9:27 am, edited 2 times in total.

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21 Sep 2011, 8:56 am

i am watching the post carefully and it is on the borderline.but i dont think it has crossed the line.contact me if you think a post has gone bad


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21 Sep 2011, 1:35 pm

Many individuals will be viewing the thread over at AFF and Autism Speaks is viewing this one as we speak.

Be polite and constructive and maybe you guys can make a difference!

This is a chance for our voices to be heard! Don't stop now!



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21 Sep 2011, 3:38 pm

Staying on topic does make for better threads.

Great article, and after a bit I think some follow up is in order.

I have my views, which have more to do with me than any recent news blurb. Like others on this thread I am self centered and live in a world of my own.

Autism Speaks is not innocent, everyone is guilty of something.

I have watched as they investigated all claims, Vaccines, Metals, Chelation, Genetics, and think they did what had to be done, go in with an open mind, explore the thinking behind claims, fund research to test the claims, then back away slowly from the disproven, while speaking softly and avoiding being sued for slander.

Science is our only path, the source of all new knowledge, and as Forest Gump said, "You never know what is inside till you open it."

Betting millions on White Lab Coats has endless risks. They did focus on a prenatal test, it would become a University Patent, everytime it was used the cash register would ring. That is just the way it is in the Science Business.

It did not work, all they got was some more grants, and nothing they could sell to Big Pharma or License. Along the way they did advance Genetic knowledge, but that is not where the money is at, for Science and Universities.

Science and Higher Education are Self Regulating Organizations, They have completly resisted Government Regulation.

A lower level of SROs was Wall Street, who had to buy their freedom from Government Regulation from Congress. The main player was NASDAQ, which was headed by Bernie Madoff. Welcome to the world.

Government is a Pay to Play System, Access costs.

So I would not blame Autism Speaks for association with known Felons, for it is the only game in town. Wakefield did take money from Trial Lawyers, to produce "Science" that opened the way for a case bigger than the Tabacco Settlement against Vaccines.

Big Pharma hired other white lab coats to refute the "Expert Witness," before the case could be filed, and getting him defrocked, disbarred, whatever, blocked that move without resorting to the usual, "He fell under a bus." Welcome to the world.

Autism Speaks guilt in this is equal to their guilt for invading Iraq.

Moving on to Current Business, I would like a few hundred suggestions about how adults living with autism, think their lives could be bettered.

This is not for Autism Speaks, I could use a few more Patents myself.

Complaining that The Tooth Fairy did not bring the pony you wanted gets us nowhere.

Children who want the pony now can post. But no Personal Attacks on the Tooth Fairy.

I have been working on light adjusting glasses, to block sudden changes, and with LEDs to add light when needed. Some film to decode the behavior of people and give visual warnings of their threat level would be nice, as would scripts for dealing with situations like people saying, "How are you?"

The technology is getting close, web downloads to Kindle and such, cell phones replacing computers, it could all fit in one noise canceling head set that would let me surf the web, read or write books, convert my thoughts directly to images, store them.

Decodeing natural humans doing natural behavior would be great, also lasers to repel them. I have been told I express the emotions of a Fire Hydrant, and people stand and yell at the Hydrant. They seem to be seeking something, what I do not know.

I see no future in waiting for them to adapt to us, or waiting for us to change, so technology seems the only possible bridge.

I do not think that something like Gay Pride will work for us. They may be different, but it is sex, which everyone has and misunderstands. There boundries can be agreed on.

In our case it is thoughts and perceptions being injected into unwilling non consenting people randomly. I can see the validity of their reactions.



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21 Sep 2011, 4:42 pm

Inventor wrote:
Staying on topic does make for better threads.

Great article, and after a bit I think some follow up is in order.

I have my views, which have more to do with me than any recent news blurb. Like others on this thread I am self centered and live in a world of my own.

Autism Speaks is not innocent, everyone is guilty of something.

I have watched as they investigated all claims, Vaccines, Metals, Chelation, Genetics, and think they did what had to be done, go in with an open mind, explore the thinking behind claims, fund research to test the claims, then back away slowly from the disproven, while speaking softly and avoiding being sued for slander.

Science is our only path, the source of all new knowledge, and as Forest Gump said, "You never know what is inside till you open it."

Betting millions on White Lab Coats has endless risks. They did focus on a prenatal test, it would become a University Patent, everytime it was used the cash register would ring. That is just the way it is in the Science Business.

It did not work, all they got was some more grants, and nothing they could sell to Big Pharma or License. Along the way they did advance Genetic knowledge, but that is not where the money is at, for Science and Universities.

Science and Higher Education are Self Regulating Organizations, They have completly resisted Government Regulation.

A lower level of SROs was Wall Street, who had to buy their freedom from Government Regulation from Congress. The main player was NASDAQ, which was headed by Bernie Madoff. Welcome to the world.

Government is a Pay to Play System, Access costs.

So I would not blame Autism Speaks for association with known Felons, for it is the only game in town. Wakefield did take money from Trial Lawyers, to produce "Science" that opened the way for a case bigger than the Tabacco Settlement against Vaccines.

Big Pharma hired other white lab coats to refute the "Expert Witness," before the case could be filed, and getting him defrocked, disbarred, whatever, blocked that move without resorting to the usual, "He fell under a bus." Welcome to the world.

Autism Speaks guilt in this is equal to their guilt for invading Iraq.

Moving on to Current Business, I would like a few hundred suggestions about how adults living with autism, think their lives could be bettered.

This is not for Autism Speaks, I could use a few more Patents myself.

Complaining that The Tooth Fairy did not bring the pony you wanted gets us nowhere.

Children who want the pony now can post. But no Personal Attacks on the Tooth Fairy.

I have been working on light adjusting glasses, to block sudden changes, and with LEDs to add light when needed. Some film to decode the behavior of people and give visual warnings of their threat level would be nice, as would scripts for dealing with situations like people saying, "How are you?"

The technology is getting close, web downloads to Kindle and such, cell phones replacing computers, it could all fit in one noise canceling head set that would let me surf the web, read or write books, convert my thoughts directly to images, store them.

Decodeing natural humans doing natural behavior would be great, also lasers to repel them. I have been told I express the emotions of a Fire Hydrant, and people stand and yell at the Hydrant. They seem to be seeking something, what I do not know.

I see no future in waiting for them to adapt to us, or waiting for us to change, so technology seems the only possible bridge.

I do not think that something like Gay Pride will work for us. They may be different, but it is sex, which everyone has and misunderstands. There boundries can be agreed on.

In our case it is thoughts and perceptions being injected into unwilling non consenting people randomly. I can see the validity of their reactions.

Fire hydrants... lasers... complaining that the tooth fairy did not bring the pony... gay pride from out of nowhere... Some unproven conspiracy about disproving "expert witnesses"...


Could you please clarify and shorten it down a bit?