Autism Speaks 1

[Brent]

Brent submitted a new resource:

Autism Speaks - World's leading autism science and advocacy organization.

Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Their longtime friend Bernie Marcus donated $25 million to help financially launch the organization. Since then, Autism Speaks has grown into the world's leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and...

Read more about this resource...

 

[HDLSeanWiley]

Anyone who is fed up with Autism Speaks can join the boycott against it: Boycott Autism Speaks | Facebook

 

[deathgrip]

What if you,want to boycott autism speaks but dont have/want a facebook?

 

[Tom]

Well meaning but misguided, as one would expect with people taking on something they do not understand.

 

[SignOfLazarus]

Well meaning but misguided, as one would expect with people taking on something they do not understand.

I actually wasn't certain if you meant the organization or the specific organized boycott linked here but I would [and do] agree for either.

I have some ambivalence about the FB organized boycott and also the memes kind of... made me feel like yelling, to be quite honest. ...but none of this-as in all of this, me, US, life, understanding- is any kind of easy to sort through.

Still... I feel that playing upon pervasive stereotypes to fight perceived silence imposed upon a group isn't a great way to go. It solidifies group cohesiveness [sort of, for some] but shuts others out and also perpetuates the confusion surrounding that group- actually potentially encouraging more harm. So if someone has gone to that page I can get a "wait, you aren't into Dr Who?", though an idea that those on the spectrum try to push in general is that "if you've met one person with autism... you've met one person with autism."

...not, if you've met one person with autism you are guaranteed to have met a comic/anime/sci-fi fan and that is the best way to reach that individual. :/

 

[Tom]

I actually wasn't certain if you meant the organization or the specific organized boycott linked here but I would [and do] agree for either.

I meant the organization Autism Speaks. It seems like some folks had a personal experience with a family member and said 'this is terrible, we need to do something about this' and then followed the standard 'let's make a charitable organization' model with advisors and boards and medical professionals.

And they treat it like a mental illness or disease, before even science knows WTH exactly it is.

And some of us are actually smarter then them, but they don't include us in their leadership or advisory councils. Do they think we are incompetent? Or do they just not trust us?

 

[SignOfLazarus]

Right- the organization itself it kind of a disaster.
I don't think it's about thinking that those on the spectrum are incompetent exactly. I've thought about this and it's not my area of expertise but I was thinking that maybe putting those on the spectrum on the board or in leadership positions would tip power balance- it could change their entire business model. It's a "charity organization", but it does have a business model. And that makes sense because to continue charities still need to look at how to make money and continue operations.

The "product" they sell though is the idea that the "disorder" of autism can be combated. Not that adaptations can be made or similar. That autism is a thing to destroy because it's a tragedy, I guess?

People pay [donate] to have this idea promoted but it's a package. You can't sell the hope without the idea that autism is some horrible tragedy. The 'research' and programs and lobbying and such are actually the accessories and extras even though it seems superficially as like those are the main show. [Just my inexperienced view]

You can't have those on the spectrum self advocating and then have autism speaks actively enabling that because it really destroys their bottom line. Then people start questioning the basic reasons the charity exists.

I get that what I'm writing is completely cynical. I would bet it is not how many of the people employed by autism speaks think. I do think that it kind of describes how the organization needs to function in some way.

There is too much that is inaccurate about what they present [in terms of individual experience], and yet they are so successful in a strange way. I honestly don't blame a huge number of people. It's just a machine at this point, in the way that we don't often think about things we do every day a lot of people involved in the organization likely don't think about specifics of what they do.

I don't think it's wrong to give people hope and comfort and involve family and friends, loved ones. To have an organization that involves those not on the spectrum. It's really inappropriate to shut out those on the spectrum from major policy input though.

 

[Tom]

...You can't have those on the spectrum self advocating and then have autism speaks actively enabling that because it really destroys their bottom line. Then people start questioning the basic reasons the charity exists.

Kind of brilliant observation!

 

[Aspergirl4hire]

I meant the organization Autism Speaks. It seems like some folks had a personal experience with a family member and said 'this is terrible, we need to do something about this' and then followed the standard 'let's make a charitable organization' model with advisors and boards and medical professionals.

And they treat it like a mental illness or disease, before even science knows WTH exactly it is.

And some of us are actually smarter then them, but they don't include us in their leadership or advisory councils. Do they think we are incompetent? Or do they just not trust us?

Yes.

What really gets me riled is that they confuse making the caregivers comfortable with doing something for the autists themselves.

Can you imagine an Autism Speaks person coming to this board and declaring we can't advocate for ourselves, so they'd do it for us, until we got 'better?'

No, I can't, either.

 

[Tom]

Yeah... Maybe they are uncomfortable with dealing with people whom they don't want to exist. Or who might understand it better then they do.

I don't see them as enemies. But with friends like these you don't exactly need enemies either.

 

[deathgrip]

Yeah... Maybe they are uncomfortable with dealing with people whom they don't want to exist. Or who might understand it better then they do.

I don't see them as enemies. But with friends like these you don't exactly need enemies either.

i think working on research targeting to erradicate autism (a test you can tell and abort your child in utero) screams genocide to me. Hitler did something similar with less "well meaning" strung in. Especially when they only use 3-4 percent of their funding to actually help autism families and 40 percent goes to research "for a cure". It stinks of enemy.

 

[Tom]

I don't believe it is Genocide we are talking about with Autism Speaks.

"the deliberate and systematic extermination of a national, racial, political, or cultural group."

The concept of Eugenics seems to be relevant however.

"a science that tries to improve the human race by controlling which people become parents"

But eugenics is generally used to mean when the society determines that certain traits or conditions are 'undesirable' and requires sterilization or abortion as a matter of law. Most western nations embraced the concept to some degree in the last century and some have been surprizingly reluctant to give it up, even after the horrific eugenics program of Nazi Germany ended with their defeat in WWII. (ie. Sweden practiced it until 1976). It still is practiced in some parts of the world however, such as the most populated nation, China.

Re-introducing eugenics formally would be a hard sell in the west, and unlikely in the near future, but as you mention their is an indirect approach by providing parents with information that would encourage abortion. Supporters of this will argue the parents have a need or right to know.

This is not a 'cure'.

 

[AsheSkyler]

Eugenics (as I understand it) is already here in the West. They're pushing for you to kill kids that were unplanned or are retarded, along with a dangerous test to see if they're retarded. When they were trying to sell their crap to me, they really played up the burden end rather than anything practical. Especially since we were low-income, they didn't want us breeding. I wonder how many other "blights on society" are going to get added to that list before all's said and done? Only the wealthy and healthy gonna be allowed to live and reproduce?

 

[deathgrip]

I don't believe it is Genocide we are talking about with Autism Speaks.

"the deliberate and systematic extermination of a national, racial, political, or cultural group."

The concept of Eugenics seems to be relevant however.

"a science that tries to improve the human race by controlling which people become parents"

But eugenics is generally used to mean when the society determines that certain traits or conditions are 'undesirable' and requires sterilization or abortion as a matter of law. Most western nations embraced the concept to some degree in the last century and some have been surprizingly reluctant to give it up, even after the horrific eugenics program of Nazi Germany ended with their defeat in WWII. (ie. Sweden practiced it until 1976). It still is practiced in some parts of the world however, such as the most populated nation, China.

Re-introducing eugenics formally would be a hard sell in the west, and unlikely in the near future, but as you mention their is an indirect approach by providing parents with information that would encourage abortion. Supporters of this will argue the parents have a need or right to know.

This is not a 'cure'.

I don't believe it is Genocide we are talking about with Autism Speaks.

"the deliberate and systematic extermination of a national, racial, political, or cultural group."

The concept of Eugenics seems to be relevant however.

"a science that tries to improve the human race by controlling which people become parents"

But eugenics is generally used to mean when the society determines that certain traits or conditions are 'undesirable' and requires sterilization or abortion as a matter of law. Most western nations embraced the concept to some degree in the last century and some have been surprizingly reluctant to give it up, even after the horrific eugenics program of Nazi Germany ended with their defeat in WWII. (ie. Sweden practiced it until 1976). It still is practiced in some parts of the world however, such as the most populated nation, China.

Re-introducing eugenics formally would be a hard sell in the west, and unlikely in the near future, but as you mention their is an indirect approach by providing parents with information that would encourage abortion. Supporters of this will argue the parents have a need or right to know.

This is not a 'cure'.

So they gave genocide a cuter name and took away the killing, its still basically a controlled breeding situation. we do this with animals to domesticate. How is it ethical on humans?
autism speaks spreads the misinfornation that we are some burden to NTs and that we, should the choice be given, should cease to be to make life more convenient for those that believe us to be a bother. Autism speaks misleads people into thinking "cure", but like you said, it is not, and more of a way to screen for us. Therefore resulting in LESS autistics/aspies. They use a lot of buzz words to misinform. That is the problem i have with them and they dont seem to want to ubderstand us too badly.
i dont think knowing if your kid has autism before they are born is certainly a bad thing on the other hand, if you are a correctly informed person you can certainly prepare to raise an autistic kid, but the way autism speaks goes to inform, would have most people believing they should abort, and thats part of the problem with them.

 

[deathgrip]

Eugenics (as I understand it) is already here in the West. They're pushing for you to kill kids that were unplanned or are retarded, along with a dangerous test to see if they're retarded. When they were trying to sell their crap to me, they really played up the burden end rather than anything practical. Especially since we were low-income, they didn't want us breeding. I wonder how many other "blights on society" are going to get added to that list before all's said and done? Only the wealthy and healthy gonna be allowed to live and reproduce?

Well tough for them, ive already bred. so i hope my unclean low-income spawns will annoy the crap out of them.

 

[Judge]

I wonder how many other "blights on society" are going to get added to that list before all's said and done? Only the wealthy and healthy gonna be allowed to live and reproduce?

On rare occasion film speaks louder than anything.

I can only wonder as to how many members of Autism Speaks have seen and thought about this film? About a future where technology and society artificially create genetic perfection for many...and eschew perceived genetic imperfection of a few. Which effectively creates an underclass of society, despite well-intended laws banning overt discrimination.

 

[watersprite]

I see your point Tom but I would add that it is a gray area as far as how the definitions contrast with the intent of that organization.

Agree with AsheSkyler about the right to know and tests for pregnancies. I've been there and was subsequently pressured by several people to "consider ending the pregnancy." And. The kid who the nurse said to me during my check-up that the child was likely to be retarded now 14 years later tested second highest in school this year for giftedness.

 

[Tom]

Not really disagreeing with the general thrust here against Autism Speaks. I was aware they did some things quite poorly. I will have to reassess them now however after reading some things said here because the implications may be more serious then I realized before. And I have not looked at them in sufficent detail.

Some of what I am saying is actually an attempt to aid your argument by becoming more accurate and specific with the terminology and facts. If this was just another online discussion it wouldn't matter really, but with a serious subject its important.

Mentioning Hitler and the Nazis, Genocide, etc. is very dangerous for your argument. Unless it is exactly and perfectly accurate someone will eventually invoke 'Godwin's Law' and the argument is over and no one will listen to you anymore.

Hitler's Nazi Regime of course had a Genocide program. Genocide has continued to this day, with the latest examples being in South Sudan and atrocities commited by Isis. But this is not a good comparison for Autism Speaks or any anti-autism movement.

Which is why I brought up Eugenics. This is not Autism Speak's name for what they are trying to do and is definately not something they want themselves labeled with.

The concept of Eugenics btw, developed by a half cousin of Darwin in 1883 predates Genocide, a term only coined in 1944.

But Hitler also had a notorious Eugenics program and it would be applicable to use as a comparison if Eugenic practices is the subject. Hitler of course didn't invent it. Shamefully it got its biggest boost in the United States earlier in the 1900s which was one of the first countries to adopt laws designed to prevent "feeblemindedness" and mental illness from being propagated. And I already mentioned Eugenics didn't die out at the end of WWII. It continued on up to the mid 1970's in places like the USA and Sweden, both which are said to have conducted 60,000 involuntary sterilizations over the course of their programs.

But it fell out of favor and was challenged on constitutional grounds and went dormant. But some laws and precedents still remain on the books. West Virginia finally formally revoked theirs in 2013, but other states have not and forms of it continue to this day in hidden corners, such as prisons.

So to say, and prove, Autism Speaks is essentially backing a eugenics program could be a very powerful blow against them, and any other stealth eugenics programs in place or in the works.

I can not say, for myself that they are yet, but have moved towards suspecting it is true. But I need to look closer and more carefully and research this.

One thing that has given them some cover, is the people who associate with them (though I do not know what these people know or think about Autism Speaks themselves - it would be easy to get sucked in - its a charity right?)

 

[Hurting89]

I don't believe they'll ever totally be able to develop a test to identify autism in the womb in the way as Down's. They can try, but they will fail.

Why do I think that? Because Genomic science is so complicated and confusing they will never be able to "crack the code" and will always hit a dead end. Well because.. Autism isn't exactly genetic, it's one of those things that can be largely randomly occurring. Yes I believe there's a wiring difference but that isn't necessarily caused by a specific "gene". This can occur randomly just through the luck of the draw.

I wouldn't worry about genocide at all. Worry about the kids that are already alive being but through the wringer by their parents taking them to "quack specialists" being given dangerousness ineffective treatment and starving on gluten, casein and dairy free diets having to do "cleanses" every month and swallow a myriad of supplements.

 

[Tom]

I don't believe they'll ever totally be able to develop a test to identify autism in the womb in the way as Down's. They can try, but they will fail.

Why do I think that? Because Genomic science is so complicated and confusing they will never be able to "crack the code" and will always hit a dead end. Well because.. Autism isn't exactly genetic, it's one of those things that can be largely randomly occurring. Yes I believe there's a wiring difference but that isn't necessarily caused by a specific "gene". This can occur randomly just through the luck of the draw.

I wouldn't worry about genocide at all. Worry about the kids that are already alive being but through the wringer by their parents taking them to "quack specialists" being given dangerousness ineffective treatment and starving on gluten, casein and dairy free diets having to do "cleanses" every month and swallow a myriad of supplements.

Up to recently the prevailing opinion in science was that genetics were responsible for the large majority of autism cases. Something like 90%. That doesn't of course preclude a certain ammount of normal random mutation being responsible for a portion. The other 10% was thought to be the result of environmental influences.

And most curently about 100 specific gene groups are associated with autism. Or in other words in many/most autisic cases a portion of these groups is mutated. You don't have to have all 100, just some, and which 'some' may be related to the type/severity of the case. But as you mention it is not an exact science with a mathematical formula (yet). The theory goes the more of these mutations you have the more likely you will be on the spectrum, and some speak of a 'tipping point', an imprecise point where enough mutations are there to make the person autistic.

The pendulum has shifted noticably in the last few years as more studies have found a greater suspected link between numerous environmental factors. Which really adds more complexity to it as each contributer to the mix is identified.

The whole thing reminds me most of the recent confusion and mystery surrounding the massive bee die-off in the USA. For years it went back and forth as far as what might be causing it - but they did not know - and the bees continued to die. The last I heard it has been been supposedly proven to be the result of pesticides. Pesticides were a prime suspect all along, but along with many other prime suspects such as GMOs, parasites, viruses, bacteria, overwork (no bee union I guess).

Exposure to pesticides btw, used on farms has also been identified as a significant risk factor for autism in a recent study. But by significant they are still only talking in the 5-10% range I believe if memory serves. And it joins quite a few other environmental factors being identified as increasing risk.

I do agree at this point that genetics will not be totally broken down into exact code readings. Too many factors as you say. Like weather but maybe worse.

But I do think they have a lot of room for improved reading and understanding of genes. And much more detailed 'partial decoding' awaits I think. There is a barrier, but we are not there yet, to put it another way.