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Cornflake
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02 Nov 2012, 1:12 pm

It simply shows that the CEO's pay is pretty typical when compared to the same position in similar organisations of similar size. Are you going to accuse all those CEOs of the other charities of grubbing for similar-sized salaries too?


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merig
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02 Nov 2012, 2:33 pm

Cornflake wrote:
It simply shows that the CEO's pay is pretty typical when compared to the same position in similar organisations of similar size. Are you going to accuse all those CEOs of the other charities of grubbing for similar-sized salaries too?


In America, most certainly yes.



Cornflake
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02 Nov 2012, 5:56 pm

So on this particular issue, we see that Autism Speaks is no different to all the other charities.
Glad we got that sorted out. :wink:


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aghogday
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02 Nov 2012, 11:36 pm

merig wrote:
aghogday wrote:


Quote and link from Autism Speaks answer to the autism community that they are not funding a prenatal test for autism, along with many other issues that are clarified and addressed in the linked interview with Autism Speaks, including an apology to those in the autism community that may have been offended in the past from the organizations efforts, and in addition, clarification of what the organization defines as cure:

http://www.wrongplanet.net/postxf175264-0-0.html&sid=22bb3ff6e2d5d35a62ce11ff0237a0cb

Quote:
"4. A growing body of scientific research suggests that we are rapidly nearing the development of an amniocentesis test to detect autism, much like the procedure currently used to detect Down’s syndrome. Does funding provided by Autism Speaks in any way enable the development of such a test? If a prenatal test for autism was developed, does Autism Speaks believe that it should be made available to the public?
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."




Well surprise surprise, their very generously remunerated PR dept didn't answer the question.

Because I don't believe a word these snake oil salesman say I tried to look up what research they are funding. Unfortunately their website states that their "legacy organisations are not included."
These legacy organisations are better known to us as CAN, ACRE and NAAR. So could it be that Cure Autism Now are developing a prenatal test for autism so that autismspeaks are technically correct with their answer. Sneaky sneaky.

Autismspeaks have also seeded many research organisations around the world which have now moved on and are independent of them. So yet again autismspeaks might technically be right but it was them that planted the seeds.
It would be interesting to see how many of the American publics money goes abroard each year.


Aghogday, how many times have you posted that link to autismspeaks idiosyncratic definition of cure. In all that time autismspeaks have not put any clear explanation of what they mean by cure on their own website.
How are visitors to their website supposed to know that they are not looking for a cure?

And you have the cheek to moan about ASAN's tardiness.


The ACRE organization ceased to existence as an organization when it merged with Autism speaks in 2005; the NAAR organization ceased to exist as an organization when it merged with Autism Speaks in 2006; and the CAN organization ceased to exist when it merged with Autism Speaks in 2007. The named separately identified organizations did not have the ability to provide grants for research after they ceased to exist.

Grants provided by the legacy organizations, when they were in existence (definition of legacy organizations), are not provided in the comprehensive list of research grants that Autism Speaks has funded as an organization, in the table you are referring to. However, information about notable research funded by these legacy organization, well into history before Autism Speaks came into existence, in 2005, is identified on the Autism Speaks website. One good example is the research that the NAAR legacy organization funded in 2001, in support of Henry Markram's mouse studies that, in part, led to the Intense World Theory of Autism, linked below.

http://www.autismspeaks.org/site-wide/henry-markram

There are two five year studies that started in fall of 2011, that in part, are dedicated toward a search for a prenatal test for the purpose of earlier identification of ASD's and potential earlier interventions.

One is being conducted at the UC Davis Mind Institute in California funded by the national institutes of health, and one being conducted at the Telethon Institute for Child Health Research in Australia funded by sources in Australia, and led by Andrew Whitehouse. Autism Speaks is funding neither of these studies, nor does this research for a prenatal test gain much attention in some online autism communities, as that attention is still being directed at the myth that Autism Speaks is funding a prenatal test by some.

Autism speaks makes it clear in their general mission statement that they support a global bio-medical effort to help people with autism spectrum disorders. They are among the first autism advocacy/research organizations to provide research in countries where there is little known about the identification and prevalence of ASD's. There is no reason why one should support Autism Speaks financially, if they do not consider a small portion of their donation dollars in helping those on a global basis with Autism Spectrum disorders as a worthy cause, to donate to.

The underlying factors/causes of Autism Spectrum Disorders have been identified by the research Autism Speaks supports, along with many other private and public government agencies that support autism research to be extremely complex with no potential of one underlying factor of causation for all subgroups of ASD's.

It is also worth noting, in regard to the general issue of Autism Research, that the records from the Interagency Autism Coordinating Committee (IACC), in a report of where Autism Research Dollars in the US originated from in 2010 indicate that Autism Speaks funded 4% of the Autism Research identified in the US in 2010 at 18M, the private Simons Foundation funded three times as much Autism research at 53M, the government/public agencies funded the majority of Autism Research at 335M, and the rest of the IAAC identified smaller private Autism Research organizations contributed approximately 2M, reaching the grand total of Autism Research dollars from 2010 at 408M, in the US. The IAAC also identified that 50 other countries are involved in Autism Research, in another report from 2010, however that report does not provide dollar figures for the research funded in those countries.

Autism Speaks identifies on their website that there is currently no cure for Autism. Cure is a general goal from the organization's general mission statement that is detailed much further than the definition provided by the Autism Speaks official linked in your quote above from me. The specific goals of their current Grants Programs for research toward that general goal of "Cure", in the general mission statement, is linked and quoted below. A link to specific examples of the research goals for 2012 is also provided in the full article linked below.

http://www.autismspeaks.org/science/grants-program/open-grants-how-apply

Quote:
Grants Programs

Autism Speaks supports global biomedical research into the diagnosis, causes, prevention, and treatment of autism or its disabling symptoms. Our mission is to improve the future for all who struggle with autism spectrum disorders. In support of that mission we provide funding along the entire research continuum - from discovery to development to dissemination - for innovative projects that hold considerable promise for significantly improving the lives of those affected by autism.

Autism Speaks research funding will be restricted to projects that address one of the following priorities:

Understand environmental risk factors and their interaction with genetic susceptibility to enable prevention and improve diagnosis and treatment

Discover bio-markers that can improve risk assessment and subtype stratification that will allow for an individualized approach to treatment

Improve quality of life through more effective medicines, behavioral interventions, and technologies

Enhance diagnosis and treatment of under-served and under-studied populations, specifically,
Nonverbal persons with ASD
Ethnically-diverse and/or low resource communities
Adults
Those with medical co-morbidities
Disseminate and implement evidence-based clinical practices to the broader community worldwide


So, those individuals supporting Autism Speaks who choose to pursue the details of research Autism Speaks is funding toward that general mission statement goal of "Cure", are provided a line by line list of restricted research priorities in funding research, on the Autism Speaks website.

And, the same less specific details of the definition of Autism Speaks general mission of cure described in the link to the interview quoted from my comment, is described on this section of Autism Speaks Website as well. In all cases they could have repeated the term cure, but that very broadly defined goal associated with Autism Speaks and other organization that seek to help individuals on the spectrum, is generally used by Autism Speaks when there is not enough space to provide a detailed explanation of what the broad goal of cure entails.

http://www.autismspeaks.org/what-autism

Quote:
What Does It Mean to Be “On the Spectrum”?


Quote:
Autism Speaks’ mission is to improve the lives of all those on the autism spectrum. For some, this means the development and delivery of more effective treatments that can address significant challenges in communication and physical health. For others, it means increasing acceptance, respect and support.



merig
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03 Nov 2012, 5:48 am

Aghogday it's Nov 3rd so I have no further interest in keeping this thread to the fore.

As I said before I also have no desire to waste any more of my life exchanging quotes with you.
The massive autismspeaks website is so full of BS to placate us and bile to please its supporters that we could go on forever.

aghogday wrote:

Quote:
Autism Speaks’ mission is to improve the lives of all those on the autism spectrum. For some, this means the development and delivery of more effective treatments that can address significant challenges in communication and physical health. For others, it means increasing acceptance, respect and support.


Well found, it would have been easier to find their actual mission statement.

"Our mission is to improve the future of those struggling with ASD by funding research and developing resources that will accelerate discovery, development and dissemination of methods for prevention, treatment and cure."

With that I will depart this land of autism hate. Because haters gonna hate.

On my way out the door I will lob another autismspeaks hate quote into another thread just for the crack. Lol



nostromo
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03 Nov 2012, 6:11 am

aghogday wrote:
It is also worth noting, in regard to the general issue of Autism Research, that the records from the Interagency Autism Coordinating Committee (IACC), in a report of where Autism Research Dollars in the US originated from in 2010 indicate that Autism Speaks funded 4% of the Autism Research identified in the US in 2010 at 18M, the private Simons Foundation funded three times as much Autism research at 53M, the government/public agencies funded the majority of Autism Research at 335M, and the rest of the IAAC identified smaller private Autism Research organizations contributed approximately 2M, reaching the grand total of Autism Research dollars from 2010 at 408M, in the US. The IAAC also identified that 50 other countries are involved in Autism Research, in another report from 2010, however that report does not provide dollar figures for the research funded in those countries.

408 Million just in the US..seems like a LOT of money. That's encouraging to me.



aghogday
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03 Nov 2012, 6:56 pm

merig wrote:
Aghogday it's Nov 3rd so I have no further interest in keeping this thread to the fore.

As I said before I also have no desire to waste any more of my life exchanging quotes with you.
The massive autismspeaks website is so full of BS to placate us and bile to please its supporters that we could go on forever.

aghogday wrote:

Quote:
Autism Speaks’ mission is to improve the lives of all those on the autism spectrum. For some, this means the development and delivery of more effective treatments that can address significant challenges in communication and physical health. For others, it means increasing acceptance, respect and support.


Well found, it would have been easier to find their actual mission statement.

"Our mission is to improve the future of those struggling with ASD by funding research and developing resources that will accelerate discovery, development and dissemination of methods for prevention, treatment and cure."

With that I will depart this land of autism hate. Because haters gonna hate.

On my way out the door I will lob another autismspeaks hate quote into another thread just for the crack. Lol


Autism Speaks apparently is listening to some of the offense associated with the word cure, and is limiting the use of the word, as one no longer finds it, in their science mission of associated research goals in 2012 that I linked in this thread. The quote you provided from Autism Speaks was published in 2009, to illustrate the science mission statement in the organization's three year strategic plan for Research Science comprising the years 2009 to 2011.

The organization now is approaching their research mission and goals on a year to year basis, per the quote I provided from 2012, that no longer uses the word cure in their science research mission statement, on that section of Autism Speaks website. There was no technical medically viable reason to remove the word cure in 2012, other than to avoid potential offense from those that do not like to see the word cure associated with Autism Spectrum disorders at all, and/or do not agree with the organization's broad definition of what cure means, specific to the organization's research mission and goals.

There is no one hating here on my end, only what I consider a show of compassion for the fuller autism spectrum, and fuller autism community, evidenced with a problem solving approach, which is actually a clinical feature of some on the spectrum, identified by Tony Atwood on his website, and illustrated further in his conferences, unfortunately to the dismay of some as well. Even though a problem solving approach rather than a strongly emotional approach, is generally recognized as a positive attribute of the spectrum, and Tony Atwood considers Aspergers neither a disease or an inherent disability, and he is also recognized among the top experts in the world of helping people more fully understand the condition of Aspergers Syndrome, in a positive way.

I've seen that opinion tossed around quite a bit in the Autism Community recently, which provided me a better perspective of the level of discontent with Autism Speaks, considering the level of discontent that was expressed at Tony Atwood, for his illustrations of the "non disabling" attributes associated with Asperger's in his conferences, that the audience appreciated with the emotional contagion of lighthearted laughter

From those that I personally know with diagnoses of Aspergers Syndrome, I do not personally think it rises to the status of disease or inherent disability for some, nor do some consider it as such, along with no desire or need expressed for remediation of symptoms, but never the less Asperger's syndrome is currently defined by the EEOC (Equal Employment Opportunity Commision) that oversees the legal enforcement of the American's with Disabilities Act (ADA) as virtually in all cases, consistently identified as a limit of brain function, meeting the ADA legal definition of disability in the United States, when assessed.

And, Aspergers remains under the ICD10 general medical classification of disease for insurance billing purposes in the US, and will continue to remain with modifications of code, when the DSM5 revision is enforced for ASD, and Aspergers is no longer considered a DSM diagnosis. It greatly depends on who one is talking to or what the context of the situation is per what terms are used to describe ASD's. In the fields of science, medicine and insurance billing, medical classifications often take precedence per the term of disease. And in the field of law, including disability law, more specifically US legal code, legal classifications most often do take precedence, per the term of inherent disability, and needs for reasonable accommodations in the workplace, specific to inherent limits of brain function.



aghogday
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03 Nov 2012, 7:27 pm

nostromo wrote:
aghogday wrote:
It is also worth noting, in regard to the general issue of Autism Research, that the records from the Interagency Autism Coordinating Committee (IACC), in a report of where Autism Research Dollars in the US originated from in 2010 indicate that Autism Speaks funded 4% of the Autism Research identified in the US in 2010 at 18M, the private Simons Foundation funded three times as much Autism research at 53M, the government/public agencies funded the majority of Autism Research at 335M, and the rest of the IAAC identified smaller private Autism Research organizations contributed approximately 2M, reaching the grand total of Autism Research dollars from 2010 at 408M, in the US. The IAAC also identified that 50 other countries are involved in Autism Research, in another report from 2010, however that report does not provide dollar figures for the research funded in those countries.

408 Million just in the US..seems like a LOT of money. That's encouraging to me.


The US government, in particular, sees it as a wise investment. As I understand the most recent research on the total dollar amount for support associated with Autism Spectrum Disorders is 38 Billion dollars a year. Just the ability to provide a substantial portion of those facing a questionable prognosis for basic self help skills an improvement in that area, from strictly an economic standpoint, potentially could pay for part of that investment.

But, from a humane perspective that value pales in comparison to the potential impact and priceless value the results of that close to half a billion dollars in research, annually, could potentially eventually make in just one person's lifetime. :) Even if the government does not literally recognize, identify, and publish that potential value in the goverment's "combating autism" phrase, it exists. :) Some people are more cognizant of that potential than others. The cognition of that potential is understandably greatly influenced by different life experiences, with some life experiences resulting in much different perspectives. :)



aghogday
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11 Nov 2012, 7:58 pm

http://www.disabilityscoop.com/2012/03/ ... ion/15286/

A correction to the last post, per the link above the total yearly costs for Autism were estimated at $35 billion dollars a year in 2007, and are now estimated at $137 billion dollars.