Autism Speaks U

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It doesn't appear to me that Autism Speaks supported the research that was reported on in the paper that aghogday cited:
http://www.plosone.org/article/info%3Ad ... ne.0024585

I may have missed something.

I believe he was referring to Autism Speaks funded research like that reported in the paper.

Research to improve the life of autistic kids and adults is great.

I'm much more cautious about research that might be used to help people identify the potential for autisic kids or for identifying autism prenatally. People are increasing using genetic markers to produce designer kids and I think this will become much more common in the next few decades.

I will look into Autism Speaks' financials when I get some time. My current impression is that Autism Speaks is concerned about obtaining money for Autism Speaks, not for autism research, and certainly not for helping autists in any way.

Here is my statement:



Part of their goal in genetic research is research that may lead to a potential prenatal test but, on this website the organization gave a specific response in an email, copy of which was presented here, that has been verified as legitimate by a respected member here, that their goal for development of a definitive prenatal test is one for potential intervention to correct or temper the developmental disabilities associated with Autism

In my quote above I left out the word provide after may; there is no guarantee a definitive genetic test will be developed so that is way I suggest it may be provided by genetic research they support.

I personally doubt a definitive genetic test will be a likely outcome of their research, and Autism Speaks admitted in their email that it is years away, however genetic research is mounting in other areas with autism like bowel disorders in regressive autism, that is leading toward a direction of reducing the more disabling impairments in Autism. Research is not quite there yet, but progress is definitely being made toward the goal of potential effective preventions and interventions to prevent the more disabling symptoms of autism that some experience.

Without research there would be no potential at all in tempering or correcting these bowel disorders that may be causing developmental impairments in children with regressive autism. In some cases it may not be nearly as pressing an issue, if one does not have a child with these problems, or one is not a child with these problems, but for those that do experience that, it can be a pressing issue, and those that understand the potential of the research, understand the research, as valuable research.

I found no evidence that Autism Speaks provided support for that specific research but they are providing support for research into the environmental causes of regressive autism, which if prevented may reduce the impairing symptoms in autistic children.

The genetic research that may potentially result in a prenatal test is being done world wide; autism speaks is one of hundreds of players in the research, worldwide, as they are in supporting research related to regressive autism and environmental/genetic factors related to bowel disorders in children as well.

The financials of Autism Speaks are clearly presented in their 2010 annual report presented on their website. 31% of the funds generated go to admin and salaries, and 69% go to programs and services; the majority of the 69% of the programs and services is allocated for research. 1.5 million dollars is identified in their research that goes directly to support programs for autistic children and adults.

As stated before the focus of the organization has been on research to help Autistic children that are severely disabled by the symptoms they experience. The portrayal of the lives and support is limited for adults or those that are not developmentally disabled by the condition. However the juvenilization of Autism, has been studied in many organizations, along with the government, and it is a clear bias.

Part of the issue, I think is the numbers of Autistic adults have not been statistically identified, at least, here in the US; it is why research into this area that the government and organizations like Autism Speaks are just starting, in the US, is so important to the future of Autistic Adults.

I'm afraid that I distrust Autism Speaks suffiently that I don't trust their summary of their financials. There is simply too much to be gained by their slanting the numbers.

I'll be looking for analyses of Autism Speaks financials over several years from sources that are not associated with or aligned with Autism Speaks.

aghogday - My distrust is not in any way a reflection on you. I need to determine things like this for myself.

That was actually my first reaction. I'm based in Portland where there's a very active ASAN chapter as well as several other groups specifically for teens/adults with Aspergers so would assume there would be similar groups in the Bay Area. I actually called in once to the Autism Speaks U conference call and it seemed like they were still new and trying to figure out what their purpose was. It doesn't surprise me that you mention it was mainly sororities and frat brothers at meeting--they're trying to beef up their community service and fund-raising is part of their real strengths. Maybe there could be some sort of attempt to ask them to donate to another autism charity that is more relevant to college-age people on the spectrum?

Here is a third party source, to find the history of their form 990's provided to the IRS, that I have used to ensure the data provided on their website is consistent, and also to compare the salaries of their organization with many other non-profit organizations to see how they compare. I determined what I state here from objective evidence, from a variety of sources. I appreciate that you don't see my statements as personal ones, they are strictly based on what I understand as facts, and am always willing and welcome facts, that allow me to have the most accurate understanding of what I am seeking to understand.

Here is the source, that was provided earlier in another forum by Zeraeph.

When I brought up the facts presented from that site on other organizations, had close to the same percentages of salary/admin expenses vs. program and services percentages, she identified that the salaries that are considered legally acceptable for non-profit organizations, are not personally acceptable to her; many people hold a similar opinion, but it is not an issue specific to Autism Speaks.

The AANE organization that she voiced support for had an identical 69% of funds allocated to programs and services, and an identical percentage of funds 31% allocated to admin and salaries from total funding.

The Better Business Bureau, is also another source where the financials on Autism Speaks can be verified.

Here is a great site, though to research the financial details, of all charitable organizations.

http://www2.guidestar.org/

I think direct conversations between organizations question the policies of Autism Speaks should be done to provide clarification, on many issues that have been done in the past with a phone call to the organization, or email correspondence on specific issues.

The effort that the individual in the other thread, in his interview is very constructive, I think in the quality and objectivity of the questions he is posing. For the good of all Autistic people I would personally like to see more of that type of interaction, in moving toward a more positive future for all Autistic people.

If Autism Speaks ever slants their numbers on their form 990's to the IRS, they will face the same potential negative consequence as anyone else would that would engage in such behavior. I suppose there is potential for a typo on their website, but as most organizations of this size they have third party accounting firms to take care of the required financial disclosures to the IRS.

One possible issue with the 69% figure is that Autism Speaks counts their (generally horrid) "awareness" programs as part of their "programs," and that awareness often doubles as publicity for themselves. So that is one thing to keep in mind.

I can't make heads or tails of their latest annual report myself, in terms of where precisely the money is going.

That is precisely the type of slanting (miscategorization) of numbers that I suspect Autism Speaks is capable of.

I do not think it is an accident that you are having difficulty understanding their annual report. I think it is made difficult to understand quite deliberately.

I have a big problem with the salaries that some of Autism Speaks staff make. If I remember correctly, their chief science officer made over $600,000 a few years ago, and several people were making hundreds of thousands of dollars per year.

Autism Speaks was also spending a great deal of money on contracts to some external fundraising companies. This is the type of contracting that is quite subject to abuse, and I would be very interested in learning who has financial interest in those fundraising companies and how those contracts were bid. I do not know that there is any wrongdoing, but I think it is worth investigating.

I am quite suspicious of all so-called 'advocacy' organizations, especially those that specialize in fundraising and that have high 'administrative overhead'.

The percentage of admin and salary costs to meet the requirements of the BBB is thirty five percent, Autism Speaks beats the standard by ten percent of what the percentage that is required, so they are well within acceptable limits for that respected organization that provides oversight for the operation of charitable organizations.

Everytime someone sees the Autism Speaks logo, it is publicity to fund the mission of the organization; publicity for funding can't be easily separated from anything they do, as well as anyother charitable organization with logos for support.

The co-founder was a vice-president of GE; these folks are business oriented, and not a fly by night organization. The organization has been caught in a few missteps, but their financial record, is impeccable, in meeting required IRS standards for a non-profit organization.

Every statement made by any person associated with the organization, is monitored for any possible negative intent, moreso than any other charitable organization I can think of, so I would be surprised if any major financial mistakes, have been overlooked, but would be interested in seeing them if you find something, noone else has found.

And to clarify, the $600,000 salary included a one time moving expense, of close to half of the base salary. The same individual, Geraldine Dawson's, current salary is in the mid $300K range, which is not unusual for a chief science officer of a major research organization. If you would like a link for evidence, I can provide it.

There are specific limits that can be spent for salary and admin. that these non-profit organizations can use to operate, if they were to continue to spend it proportionately more on one individual than the others, they would end up with less personnel to operate the organization; it's not something they can hide from the IRS, or anyone else, for that matter because their financial records are open for public review.

The financial summary on the website is a review, and not the same detailed report that the form 990 is that is provided to the IRS. That's not the type of report that most organizations would present on a website; it is actually much more complicated than what is presented on the Autism Speaks website. That is the place to look if someone wants to take the time to know further details of where the money goes, and can easily be found on the website I provided a link to.

Aghogday...

You do *NOT* speak for me, now, or ever, and I would ask that if you *EVER* attempt to do this again you be barred from this forum.

I categorically forbid you to co-opt my name as evidence for your Autism Speaks PR and twist everything I say in the process. It is not necessary for you to mention or refer to me at all, ever.

My understanding is that you are well respected by Alan Turing, so I let him know the source of the link that I provided information for. I could provide the original quotes of my conversation with you on the subject if you like, but was extremely careful not to misrepresent any fact, that could not be verified here by the record. I was not attempting to speak for you only reference your response that you presented here to me on the subject, because I think he respects your opinion.

I will respect your wish that you don't want me to reference your opinion in the future, but there is no rule here on the site against referencing an opinion or fact that someone else stated that I am aware of unless it is personally offensive, or there is insinuation of offense.

aghogday, what is your opinion of "I am autism" video which they posted a couple of years ago? Do you agree with their portrayal of autism?

Also, how do you explain the fact that, statistically, people who support Autism Speaks are mostly parents while ppl who oppose it are mostly individuals affected by autism? Do you feel that individuals affected by autism have poor insight into their own condition and thats why they view "autism speaks" portrayals of themselves as "too negative" when in reality they are quite accurate?

*The is no need, justification or excuse for you to refer to me at all, now or ever.
*Any point you wish to make can be made without mentioning me at all.
*If you are so "anxious" not to misrepresent me you should be only too happy to avoid that eventuality entirely by not mentioning me at all.

this is not directed at the poster im quoting ,but everyone.ISSUES WITH PEOPLE please contact mods.please everyone dont threaten expulsion on open forum.contact me first because the real mods are busy with the other forums,THANK YOU

Just to clear up any misunderstanding, I did not "threaten expulsion", that would be ridiculous, I am not a mod, I cannot expel anyone, I threatened to "ask for expulsion"...a very different thing.

Anyway it need not arise as aghogday has now undertaken, of his own free wiil, to refrain from mentioning me in future, which solves my entire problem with him.

@EVERYONE.i know what to post said i know that no one threated to expell anyone.i know they just said we will try to expell someone.i think you know what i meant to say.keep all such related talk off forum