Lying in your face

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It is well known that Autism Speaks serves the interests of parents with autism, whilst autistics in the main are shuttered out of much of the organisation, yet in a news report this was claimed:
"Autism Speaks is, first and foremost, a voice for people with autism who often do not have the ability to speak for themselves, nor the resources or power to affect the change our community needs," continued the Wrights.

As can be easily seen from actions in the past, parody protected under fair use has been silenced for copyright violations about autism speaks by autism speaks lawyers, an illegal action. The person involved was an autistic. Their qualification of autistics who cannot speak for themselves seems hollow given the conflict over statistics of who speaks and the number who can actually speak, and those who can speak are in fact often opposed in part or whole, as if autism speaks is a foreing body.

"The horribly tragic situation at Penn State University is a sobering reminder of what can happen when the powerless have no voice and powerful institutions have no one holding them accountable,"

Another ironic quotation from the co-founders of autism speaks when they seem to run roughshod over negative opinion of themselves.

They seem to be just using the Penn state fiasco as a method for propaganda:
http://www.sacbee.com/2011/11/19/406682 ... -call.html

yea i never believe they changed.they will always have tricks up there sleeve

i don't think i have seen much observable difference in what most of their supporters believe.

They seem to have jumped on the bandwagon and used it as an opportunity to promote themselves, although having a big powerful organization like them calling for the prosecution of those who abuse Autistic people is definitely a good thing.

From the article

If this really is their true purpose, (which I don't believe it is) I'm afraid I have seen no evidence that they are doing anything but a very shoddy job of it.

The problem I have with saying this is "lying in your face" is that in order for that to be true, they have to KNOW what they say is incorrect, and intentionally misstate the truth for the purpose of deception. I don't feel that is the case, as they seem to be very sincere in what they think they are doing. What there seems to continue to be is a huge communication gap, and what these words can or should be interpreted to mean.

The problem with questioning is their sincerity is that you lose their ear immediately. The worst thing you can ever do is to call someone a liar when they are think they are being truthful. That builds a wall that will never come down. Much better to very gently and carefully get them to see where you are coming from, so they can reach their own conclusion that to you the statement would appear untruthful. After that, they are likely to chose their words differently.

In the NT world you also have to allow for some exaggeration or over reach in a sentence, or even an outright misspeak. Meaning is not derived only from the exact words in a sentence, but from the entire conversation surrounding it. If one word in a sentence is used incorrectly, while the meaning in the rest of the conversation makes clear what was meant, that one word cannot be said to be a lie.

well. they should learn about the way we talk if they want to call themselves autism speaks. and i think they know what they are doing. if they don't then they are incompetent. and besides i don't think they know or even care about what we say here. thats why they walk all over us.

The founders of Autism Speaks had a grandson that lost his ability to communicate through regressive autism. The whole idea of the phrase "autism speaks", was in hopes to provide support to those children like the grandson of the founders, that did not have the ability to communicate, a voice of support through the action of research and awareness.

What one has to do to understand what they fully mean by "Autism Speaks", is to imagine themselves as a parent of a child that loses all ability to communicate and imagine what they would do to try to help that child communicate, within all the means they possess.

Well, in the case of the founders, they had a lot of means. A friend that donated 25 million dollars, and the insight of the Grandfather into how to make things happen, through his experience as vice president of GE, President of the NBC corporation, and developer of the MSNBC and CNBC networks on TV.

The whole motivation though, was based on that grandson that lost his ability to communicate. The laser focus that became "Autism Speaks", the potential of a voice for their grandchild.

Would they possibly think someone was going to take offense at helping their grandson and others like him, by naming the organization "Autism Speaks"? Not likely, they wanted to help people like their grandson not hurt them.

The phrase "Autism Speaks" communicates well to the general population, that communication problems in Autism is a major aspect of the disorder. On the other hand, those with Aspergers have no significant delays in speech, so the phrase does not apply to them; it's not the problem it is for children like the founder's grandson.

Some with autism that do speak, have taken it to literally mean that the charitable organization is trying to speak for them; that was never an actual problem for them in the first place, and simply a misinterpretation of what motivated the individuals that started organization from the beginning.

They have indeed focused on those individuals that either do not speak or have lost words in childhood, and the representation of the portrayal of the children throughout the years, is reflective of this focus.

One final thing to consider is, at this point in time people with Aspergers, that as part of that condition, do not have a clinical delay in speech, comprise about 5 percent of statistically understood diagnosed cases of ASD's, per statistics from Wiki.

That is the minority of known cases of ASD's, and while the problems with Aspergers are very real, it's the other 95% that the organization has been focused on, more specifically the 30 to 40 percent that have been identified without the ability to speak.

This understood 5% of ASD's, need no actual voice to speak for themselves, but never the less, some don't have the resources as a whole, for the assistance they may need from the government and other resources in their lifetimes, so hopefully autism speaks will give this more focus in the future.

It appears they are acknowleding it, but as DWamom pointed out, attacks are walls, that lead nowhere constructive.

If one does not like Autism Speaks there are many other ways to help autistic people, as I mentioned to you in the other thread, about the thousands of organziations that exist in the US, beyond Autism Speaks.

The Vice President of the organization has a son with autism, and many others in the organization have this same personal stake in relatives on the spectrum. It could easily be considered cruel, for an autistic person to suggest that these individuals that have children and family members with autism, would do anything intentionally to hurt an autistic child through the efforts of the organization.

For anyone that ever has an autistic child, that cannot communicate, they will understand closeup and personal, the desire and need to provide the child whatever help they can get.

And, understand better, why someone that had the means that the founders of autism speaks had made their best effort to do whatever they could do within reason to make a difference in the lives of children with autism, in hopes of providing them a voice in life, that they might not otherwise have.

The organization admitted here, in an interview, that they have made mistakes, and have learned from them. Obviously some of the videos they made were too strong on the attack of the part of autism, that can take the ability to communicate away from a child.

They understand now that there are those that do have the ability to speak with autism, that interpret this as a personal offense to them, so they have adapted to that criticism.

It's simply a matter of emotionally laden communication to motivate individuals to support a cause as opposed to that same communication taken as a personal offense as to one's identity as a human being.

They understand alot more about Aspergers than they did when they started up, and those that have offered the constructive criticism have helped them to gain that insight. It is important that constructive criticism like that continues.

But walls like they are liars, a NAZI organization, evil, a cult; all those personal attacks serve no purpose but hatred against the organization, and a reflection that some autistic people have no desire to constructively communicate with the organization.

Last edited by aghogday on 26 Nov 2011, 7:41 pm, edited 1 time in total.

well i don't estimate people's intentions well but actions speak louder than words and thats what i look for in an organization. autism speak's actions tell autistics loud and clear where they stand.

Just out of curiosity beyond their salaries that compare with other charitable organizations their size based in areas high cost of living areas like NewYork City, the cease and desist letter for the NTspeaks website two years ago, the two offensive videos, that were removed two years ago, what are the actions of the organizations now, that you are concerned about, as far as where they stand now?

A great deal of clarification has been provided in the last couple of months to help people here better understand the organization, at least in hopes to help people understand the organization wasn't out to harm anyone, with ill intent, with the actions in the past that have offended people.

This is their mission statement below, that expresses their goals as an organization. If one does not agree with their mission, it would be good to support another organization, but those that support autism speaks support that mission, and fund it per the goals of that mission. Their actions have to speak loud and clear to support this mission, if they want to continue to get the support from individuals that support this mission.:


http://www.volunteermatch.org/search/org56064.jsp



Their three core components of their mission is only this:

Funding global biomedical research into the causes, prevention, treatment, and cure for autism.

Raising public awareness about autism and its effects on individuals, families, and society.

Bringing hope to all who deal with the hardships of this disorder.

So in short Research about Autism, Awareness about Autism, and Hope for those that deal with hardships with the disorder.

From this perspective of their mission are their actions speaking loud enough to meet their goals?

In my estimation from an analysis of their mission statement the aspect they are weak in is the research, awareness, and need for hope among those that struggle in the identified 5 percent of individuals that as part of their diagnosis, do have the ability to speak for themselves.

For the part of that 5 percent that do provide constructive input to the organization, that's good, I think, because it's the area where the organization needs assistance to improve the most, it seems to me.

There are some that would like to the organization provide direct financial support to autistic people and their families, but it is currently not part of their mission. Even so, about 4 percent of the funding goes to that need.

Many have suggested that this need replace their research effort, however research is the number one goal listed in their mission, and not likely to change.

So, those that hold that opinion would likely be better off supporting another organization that does have direct financial aid and support to families as part of their mission instead of research. There are many out there, if one researches these organizations.

Last edited by aghogday on 26 Nov 2011, 8:29 pm, edited 1 time in total.

I have always suspected this, but is there any evidence to support this as a valid claim?

by actions i mean big ones like the whole abortion project and many pr campaigns.

There is no abortion project; they made it clear in their interview that they aren't looking to even provide a definitive prenatal test anymore. There are other organizations at this time that are specifically pursuing prenatal tests, not associated with autism speaks.

I pointed out the issues with their PR campaign in the past, but what specifically is the problem with their PR campaign now, that they have made the adjustments to criticism from the past?

I suggest they don't provide appropriate portrayal and enough awareness of Aspergers, as an area of improvement. I edited my last post to provide their mission; other than their lack of focus on Aspergers, do you see any specific actions that aren't speaking loud enough to meet their mission as stated for the organization?

how much did the brooklyn bridge cost

so they handed the genetic research off to bgi, a company owned by the chinese govt. thats sure a good way to step out?

The genetics identified in association with the Autism Genome Library are vital in finding the underlying causes of co-mobid conditions associated with autism, like GI issues.

There is already some research that links GI issues co-morbid with Autism, to a genetic association.

BGI is an international private corporation that sequences human genomes. They have divisions in the US and Europe, that sequences genomes for many different purposes. There is free market trade with China, it's likely that part of your computer was made in China as well as many of the items one buys from Walmart, potentially some of the clothes you are wearing.

BGI is just another corporation founded in another country that happens to be China in this case.

The corporation is also providing genomes from Autistic individuals in China.

The autism genome library already exists with sequenced genomes from autistic individuals. This company is providing more of the same, sequenced genomes from autistic individuals, they aren't researching a prenatal test for autism.

They aren't owned by the Chinese government, they are a private organization that was founded in China, if you click on the link fo their american division that is providing the work, you will see that they work with major hospitals and Universities in the US.

There isn't any more Chinese government conspiracy going on with this, than there is with the T-shirts we buy from them. China is definitely benefitting from a free market world, but so are all the other countries. It's part of the reason a person can buy a $500 LCD TV that would of cost $20,000 ten years ago. And of course part of the reason for the shortage of jobs in the US. If the Chinese government wants autism genomes they have over a billion people to select from that they could hire BGI to test, if they need that information.

Autism Speaks picked the corporation that was proven in the world, to provide good results, at the best price. Same reason US companies get companies from other countries to make the components in our computers.

http://bgiamericas.com/



A good way to find out if a corporation is reliable and trusted is to see the level of sucess other organizations have that deal with that corporation. Major Hospitals and Universities, that trust the organization, are an indication that the BGI corporation, is an organization that can be trusted as well as any other company that sequences genomes.

Autism Speaks research that they support, and effort to increase the samples from the Genome Library that is already in place, has nothing to do with an abortion project on their part, or the development of a definitive prenatal test on their part; there is absolutely no evidence to suggest it is, and they have already stated they aren't looking to develop a definitive genetic prenatal test.

This concern lies within for profit organizations that are actually working to provide genetic tests for autism, as provided in another thread, there is already a for profit organization that has deveoped a postnatal genetic screening test for autism. The organization has nothing to do with autism speaks.

im not saying autism speaks is all bad,but i still wouldnt believe everything they say,they maybe hiding many secrets