I AM CONDUCTING AN INTERVIEW WITH AUTISM SPEAKS

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22 Sep 2011, 7:52 am

Josef Rudolf Mengele
Graduated PHD Anthropology Munich (1936)
Graduated MD Frankfurt (1938)

Harold Shipman
Received a scholarship to medical school, and graduated from Leeds School of Medicine in 1970

Ayman Mohammed Rabie al-Zawahiri
Studied medicine at Cairo's al-Azhar University, graduating as a paediatrician. (1970s)
Professor of Medicine at Cairo

Impressive professional qualifications, no question of that, but did that really guarantee, expertise, understanding and integrity?

Another question now being asked on AFF:

Why would we want such people as "Autism Speaks" in our good books at all?

If I ever think of an answer I will let you know immediately.

Gedrene
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22 Sep 2011, 8:07 am

All this time I have seen people go completely off of the point in this thread, trying to justify their fallacy of a lack of charity, making ad-hominem arguments all of this time, cranking out nothing but honking piles of propaganda and ramming in talk about their personal issues like it's no tomorrow.

But now I want to drag this thread out of the metaphorical cesspit and transplant here right now the claims that were made by autism speaks and I want people who actually have a brain (and don't just decry something on account of its reputation or intuition) to show me if, whether, how and why Autism Speaks is lying in these cases with proper evidence and not just emotions, feelings, hersay or unsourced rubbish. So, here are the quotes from the interview:

q4 -
A: Autism Speaks is not funding any research to develop a prenatal test for autism. That is not our goal. The genetic research Autism Speaks has funded is aimed at finding biological causes, as described above

q6 -
A: Autism Speaks does not and never has sought to eradicate autism

q7 -
A: We believe that everyone with autism has special gifts – it’s up to families and the community to help them discover those qualities. We do not speculate on who may or may not have had Asperger Syndrome in history.

q8 -
A: Absolutely. We post all open positions on multiple job sites and encourage anyone who meets the qualifications to apply. Autism Speaks does not discriminate in its hiring practices. People with autism are employed at Autism Speaks and are also appointed to several boards and committees, such as the Scientific Advisory Board and Treatment Advisory Board, both of which review and evaluate our research grant proposals. So people on the autism spectrum are shaping what we fund. We also have many family members at Autism Speaks, both as employees and board/committee members.

You have no excuses not producing any information because to form any negative opinions of someone you must have seen evidence of it occuring. Otherwise your opinion is the result of blind faith. Being that this thread is about what autism speaks said in the interview (and people have abandoned the other thread) then in order to say that autism speaks was lying you must provide sources. I don't like autism speaks either but I wont bend my principles or ignore the duty to seek the truth just because it is inconvienient for people to make a witch hunt.

Last edited by Gedrene on 22 Sep 2011, 8:13 am, edited 1 time in total.

Gedrene
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22 Sep 2011, 8:11 am

AlanTuring wrote:

Tambourine-Man wrote:

One last time. I LIVE WITH MY PARENTS. I am nothing and no one special. I'm just working hard and chasing a dream. Anyone who finds fault in that has my blessing.

I think that Zeraeph has given you some very good and well-intended advice.

I urge you to think about it carefully.

And what advice is that exactly? Tell me.

Gedrene
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22 Sep 2011, 8:17 am

Tambourine-Man wrote:

AlanTuring wrote:

Tambourine-Man wrote:

One last time. I LIVE WITH MY PARENTS. I am nothing and no one special. I'm just working hard and chasing a dream. Anyone who finds fault in that has my blessing.

I think that Zeraeph has given you some very good and well-intended advice.

I urge you to think about it carefully.

I agree. I say I'm living with my parents only to suggest that I am not an "undercover marketing strategist,,"the autistic messiah," or "the antichrist." I've been called all these things and more.

Yeah, I'm an ambitious, overzealous kid. One day I had the whacky idea to ask Autism Speaks for an interview. I didn't really think they would respond.

I discovered I was autistic after some incredibly difficult and confusing years. I moved 35 times before I was ten. My sister died of leukemia at ten. I was holding her hand. My brother had brain surgery after falling 31 feet off a ski-lift that I was riding with him., My dad had open heart surgery. I was misdiagnosed bipolar and pumped full of awful anti-psychotics. I attempted suicide numerous times.

I was miserable. Finding out I have autism was my saving grace. It meant I wasn't just weird and rude. Suddenly my whole life was given a context.

So yeah, I'm way excited. I'm happy for the first time in a long time. I'm so happy I don't know what to do. I'm not supposed to feel this way.

I'm going to keep being happy as long as I possibly can. I will "tone it down a little" on these suggestions. I'm just excited. I honestly thought I would be dead by 25. I had given up. I spent every day waiting to die.

All of this has been a miracle. I can pretend I'm not excited and nervous out of my mind, but it would be just that, pretending.

I think to be honest that you're stuck in a giddy are and are not noticing that some people on this thread are playing you around.

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22 Sep 2011, 8:25 am

Zeraeph wrote:

Association fallacies that don't provide any sort of evidence at all relating to autism speaks. Talking about evil people and not justifying a link is just a shock tactic, which is based on the premise that their taint will bleed in to whatever is talked about negatively, in this example 'Autism Speaks'

It's almost as one-dimensional as saying that because Hitler was a man all men are like Hitler. Just because there are medical professionals in Autism Speaks and just because Josef Mengele was a medical professional doesn't mean that all medical professionals at Autism Speaks are like Josef Mengele. If you really want to make that comparison add evidence that makes the comparison worth making, or otherwise this testimony amounts to one big association fallacy. Tub-thumping.

Last edited by Gedrene on 22 Sep 2011, 8:36 am, edited 1 time in total.

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22 Sep 2011, 8:35 am

I actually thought the lady was reasonable and I dont know what the big fuss is about.

I like that they are focusing more on advocacy and skills than just research
I thought their goals were worthwhile

I like that they have never had goals of eraticating autism

I think we need to let go of some of these myths put forth by ASAN because of compition for funding

However, I thought her apology for the media issues to be [email protected] dont apologize by saying you're going offend someone no matter what you do. So based on that I dont accept her apology.
They try to appeal to parrents of LFA kids because they give them the most support, but I think if we were better represented and there was more awareness for the higher end of the spectrum and the issues we face with the NT population, then I think I would be more supportive of them.

However I am against any research that involves painful or harmful procedures and/or drugs.

I had a spinal tap when I was nine because some research doctor thought I had a degenerative brain disease.
I wont go too much into it, but I felt soo helpless and felt like the only thing I could do is scream for 3 hours until by mom withdrew consent when she came on the floor and heard me screaming.
Basicly they were sticking long needle into a chord of nerves in my back....it was the most painful thing ever
and I had no legal right of my own to deny consent and just had no way of defending myself....and I was left all by myself with them for 3 hours.

Now days, it is illegal to give children spinal taps as it should be.

I am against using kids as medical experimentation like this, expecally when you have cureby parrents who will stop at nothing to have a normal child.

Jojo

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All art is a kind of confession, more or less oblique. All artists, if they are to survive, are forced, at last, to tell the whole story; to vomit the anguish up.
-James Baldwin

Gedrene
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22 Sep 2011, 8:41 am

jojobean wrote:

However I am against any research that involves painful or harmful procedures and/or drugs.

I am against using kids as medical experimentation like this, expecally when you have cureby parrents who will stop at nothing to have a normal child.

Jojo

I agree, but can I have testimony, written sources, pictures anything that says the same which contradicts what Autism Speaks said in their interview? Or are people just gonna keep emptily claiming that the other side are liars?

Zeraeph
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22 Sep 2011, 9:33 am

jojobean wrote:

I had a spinal tap when I was nine because some research doctor thought I had a degenerative brain disease.
I wont go too much into it, but I felt soo helpless and felt like the only thing I could do is scream for 3 hours until by mom withdrew consent when she came on the floor and heard me screaming.

I think that is a better reason than any I offered for not blithely assuming that qualification equals validation.

How horrifying for you!

Qualified people do not have to make "most wanted" lists to be monsters.

Tambourine-Man
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22 Sep 2011, 9:38 am

Inventor wrote:

Questions were asked, answered, and the truth comes out, demanding that Autism Speaks disbands and gives all their money to ASAN is the only reason, the only talking point, that ASAN has to exist.

It is not going to happen, research into autism is not going to stop, qualified and talented people will continue to lead, and rejecting reality is just an excuse to do nothing, and complain about those who act.

Reading over this thread I find the voices that Ayn Rand wrote about in Atlas Shrugged, the Unions and Art Critics who sought to drag down and contain talents, which they did not have.

Autism Speaks should be Unionized by autistics, and the Science Board should be staffed by Community Activists. Without education or experience, they know better than everyone. While they call anyone who would deal with the world a "Token Aspie" Autism speaks has more than the quota of one in a hundred already.

If autistics are so great, they should have started something, anything, by now. All that is heard is complaints, and calls to confront grandmothers on the street. That is not a program, it is a Public Relations disaster.

It is the usual, those that can't, won't, say it is hopeless, attack those who try, and make unreasonable demands. First they must give all the money to ASAN. As the money was raised for research, that would be fraud.

Calling for the end of autism research is failing to gain support.

Autistic Activists have failed to produce one suggestion of how our lives could be bettered, except ASAN who sticks with, "Give us the money."

Winning the hearts and minds of the parents and grandparents of autistics is not done by confronting them on the street. That is where all of the money is coming from. They give millions to Autism Speaks, and not a dime to ASAN

The mindless attacks are aiding and abetting Autism Speaks. Stating clearly that them disbanding is your only goal, does show the narrowness of your program to all.

This is clear evidence that the world cannot expect the autistic to self advocate, that they do need professional outside help.

This was very kind. Thank you. I wish the people at AFF could see it, though most of them are being very agreeable.

I realize most of the debate here is for sport.

If the naysayers are truly passionate, they should sh$t or get off the pot.

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22 Sep 2011, 9:42 am

I'm not interested in being a journalist. I don't know what a journalist is.

I'm autistic and I do a little writing.

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22 Sep 2011, 9:50 am

I have so much to say about the awful reality of Autism Speaks, that I struggle to find words...but I don't have to, because somebody else found the words better than I ever could, and I hope nobody minds if, rather than plagiarising and paraphrasing them to pass those words off as my own, I just come out and quote them from AFF:

Quote:

Autism Speaks was founded by two aggrevied and bereaved grandparents of a kid with Autism. They were middleclass and not without social and media connections. The grandfather worked as an executive at Fox.

Now they took the view that Autism was (like the Generation Rescue crowd) the fault of mercury from vaccinations. They started a long running campaign against this and touted what amounted to therapetic leeching toxins from the blood as well as funding towards making a case towards pharamceutical companies. They warded potential parents off vaccinating their children and far from embracing the “gifts” of Autism that they now allude to, portrayed Autism as a cancer and a monster. A “leaden shell” behind which “normal kids are hidden and trapped, waiting for the mercury to be leeched out so they can be “normal.

They denounced all naysayers and in their efforts and scaremongering managed to dry up funding resources for other Autistic charities and engulfed similar charities like Cure Autism Now. They also took measure to sue naysayers including a 14 year old AFF member. You did know about this right? They had similar hopeful and deluded parents barracking for them and supporting them through funding and financial backing. Then something really strange happened.

The cases and studies did not support their theory. By this time they had scientists and a HUGE following. What did they do to the parents that were waiting for their children to be released from the leaden shells that they had PROMISED them they would do? What did they say to all the Autistics they had demonised? What did they do to all the groups that had denounced their abhorrent stances?

Well…nothing really. They abandoned the people that trusted them and that they lied and broke their promises to. They simply went of on the new best strategy. Biological and genetic research and obtaining vast amounts of genetic databases of material from Autistics to further their ends. Who would they need to work with for such patents? That’s right. Their good friends in Pharmaceuticals. But of course by now they had a presence of huge proportions because simply no other Autism charity could compete on a funding level with them in respect to Autistic ventures and due to the strong connections with celebrities and governments (oh a papal recognition from the Vatican) they basically write their own ticket.

Now It gets better. The fierce critics were by and large from Autistic online communities. Go to Wrong planet and look at some of the horro of Autism Speaks threads. Some one bumped them about 6 months ago so they ought not be too hard to find. (Yes I wonder who too LOL). Also of course you need to look here and especially on AFF’s blogsite.

So winning over the hearts and minds of these empty headed Autistic opponents was the next step. They have to be reasonable and play nice and look for opportunities to present themselves as a worthy organisation...

...Now there is another opportunity. A young enthusiastic little self-proclaimed activist opens up channels of communication and in such a way that glosses over any of the BS they have done in the past or suggestion that they are anything but a reasonable organisation worthy of a listen and that we can not beat them we may as well support them.

That in itself is pretty bad. But you know what is worse? YOU now trying to bask in the sun over this tremondous achievement. But that is forgivable. You are young and enthusiastic and maybe have no idea with the apparent little research you put into seeking out such a dangerous organisation. What is worse still is now berating anyone who doesn’t embrace this huge favour you have done by allowing them to think that we may be a soft touch and may want to actually extend the olive branch or some crap.

I am not into guilt tripping you John Scotty...that is unfair and wrong, you began to recognise your own talent and started to feel around for ways to parlay that into a livelihood...this isn't your first mistake and it won't be your last, but TRYING to make best use of your talent, overall, is probably one of the best decisions you will ever make in your whole life and the mistakes you make are the eggs you have to break to make that omelette...

We all make mistakes, I spent a month as an enthusiastic evangelist for Amway at your age :oops:

Last edited by Zeraeph on 22 Sep 2011, 10:05 am, edited 1 time in total.

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22 Sep 2011, 9:57 am

Tambourine-Man wrote:

If the naysayers are truly passionate, they should sh$t or get off the pot.

By the way, in my real life I certainly do sh$t, and never intend to get off the pot. All my money is firmly where my mouth is and I am so far out on a limb...well I mustn't think about that or I will get vertigo...

...and I am not jerking you, or anyone, around.

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22 Sep 2011, 10:18 am

Zeraeph wrote:

...and I am not jerking you, or anyone, around.

But then I come back and remember that not two pages ago you were saying that he was alienating his audience without giving a reason why. That just sounds like what somebody would want other people to think. ci said the same to me before actually.

I am still waiting for your replies with categorical evidence as to where and when autism speaks lied in the examples I gave, or are you trying to deflect from that? Do you not think that giving reasons behind why you call someone a liar or evil is important?

Last edited by Gedrene on 22 Sep 2011, 10:25 am, edited 1 time in total.

Gedrene
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22 Sep 2011, 10:23 am

Tambourine-Man wrote:

I'm not interested in being a journalist. I don't know what a journalist is.

I'm autistic and I do a little writing.

You should know what a journalist is. You said you wanted to do writing because it was the only thing you thought you were good at. That doesn't sound like a little.

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22 Sep 2011, 10:34 am

Gedrene wrote:

I am still waiting for your replies

I hope to heaven you are not also holding your breath!

Your fixation with me is both unseemly and unhealthy. The best way I know to deal with that, even for your own sake, is to refuse to let you hook me into any form of interaction, and that is all the reply you will ever get.

Tambourine-Man
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22 Sep 2011, 10:37 am

Gedrene wrote:

Tambourine-Man wrote:

I'm not interested in being a journalist. I don't know what a journalist is.

I'm autistic and I do a little writing.

You should know what a journalist is. You said you wanted to do writing because it was the only thing you thought you were good at. That doesn't sound like a little.

What is a journalist? Is it anything like a diaryist?

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