"Autism Speaks" Response to Autistic Input

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If others do not like negatives especially with concern to a view of autism as a disorder by those that desire a cure they will not compromise to respect those views. Instead what seems to happen is envy over success and demands for compensations themselves. In life their are many avenues to derive earnings. It is not commonly derived by complaining others are well off and that him or herself is poor because another person is well off. While I don't myself believe it is necessary to pay large wages if an organization has good ideas under a non-profit model as people can be found who will do it more affordability I am told by an autism specialist that works with me non-profits all tend to pay high salaries whenever they can.

It's easy enough, it's all listed there in their annual report.

There is nothing unusual about the high salaries required for the expertise to run an organization that is a huge one in scope and effect; it is in alignment with other charitable organizations this size.

If the organization could not gain the expertise needed to run the organization, it would not be nearly as successful. This is a clear requirement in the administration of any large organization.

Their mission stated in the report is:



If by support you mean providing direct or indirect financial aid to Autistic people, that's not their mission as stated. Other private foundations provide that kind of support in the way of scholarships for Autistic people, housing opportunities, and job placements.

The government, by in large, provides direct financial support for those that meet government guidelines. Autism Speaks works in tandem with these organizations to promote results that benefit Autistic people, as explained in the report.

The report provides comprehensive information, that provides evidence that the organization is meeting the mission, as stated, that is supported by those that contribute to the organization.

It would be a good idea for anyone interested in the organization to read the report, and to see how the organization is meeting the goals of their mission as provided in the report.

The organization is involved in a myriad of efforts to help autistic people. That is clear in the report.

Research into the causes, prevention, treatments and cure for Autism is a major part of the same mission that is supported by the government, many other organizations, and the majority of the general public. As stated before, if one does not think that is a worthwhile effort, this is not an organization that one would want to support.

There is however, no reason to vilify the organization, in fulfilling a mission, that the government and the majority of the American public see as a pressing need, or to suggest that the organization does nothing positive for Autistic people.

If one reads the report, it is clear the organization is involved in many efforts that have the potential to positively influence the autistic population as a whole. That certainly doesn't mean that anyone needs to agree with everything the organization does.

And as evidence provided earlier in this thread suggests, the numbers of autistic adults that will need some level of financial support to live outside of their family home in the future, as provided by government numbers, is estimated at close to 400,00 in the coming decade.

There are already thousands of Autistic Adults with developmental disabilities, on waiting lists for support to live; that is indeed a crisis that requires study and action by the government, and foundations with the mission to directly provide the support. Organizations like Autism Speaks provide a supporting role for these organizations with their influence and research funding to find the best solutions for the future.

It's all in the link to the report, provided by Lau, for those that want to read it.

Odder still they haven't filed 2010 formally yet...and they seem to be divvying the take between three (though predominantly two) companies these days (45mill/12mill split)

"Autism Awareness" is, of course, only as good as the intent of it's spin...in terms of which, Autism Speaks has a pronounced tendency to be as much use to autistics as a chocolate teapot.

Two of the actions were considered ground breaking. It's hard to dismiss what the rest of the world sees as reality as imaginary. You seem to be intent on dismissing the reality of the positive actions of the organization, in fallaciously suggesting that the organization produces no positive actions. That is objectively a fallacious statement.

The organization also produced at least three research results that were considered ground breaking as well, in 2010. The numerous other positive actions taken by the organization that have the potential of positive influence on Autistic people are available in their annual report as well.

Your link you present for guidestar.org is broken, If you want to fix it and present it for others. It is where I have found evidence before, looking up other charitable organizations, and seeing that the salaries of organizations the size of Autism Speaks are in alignment with the norm. It is an excellent resource of information for charitable organizations.

You have *MET* the *WHOLE* "rest of the world?

...and discussed "Autism Speaks" with them?

RADICAL!



Couldn't agree more, most 501cs are over paid tax shelters exploiting issues...it's an accepted norm, but that doesn't make it a good thing and it certainly doesn't make it something we are obliged to enable or put up with.

Link isn't broken, but there was intermittent access earlier...

Bottom line is.

It is conducting research and making progress. Some people disagree and want the money issued to themselves or of their ordained choice, most don't bother with it and many in the autism community seem to support it. If you don't desire that kind of research and disdain a view of autism that projects near entirely the hardship so as to correct them instead of an enlightened existence found in people with autism you will find core value an philosophical problems. By the way I am enlightened. Makes me a bit dizzy at times but still I am enlightened. I don't need that part cured but a bit of a drift after some cabage and taters and the profound wisdom lingers.

This topic I believe is solved. I could make mountains out of moll hills out of opposition to cater to the rights of individuals to have this research focused on and conducted. Ultimately if the issue centers around how money should be used and this research is less important it is a free world out there and all the fuss is wasting your and others times starting your own organizations to do what you want instead. However with all the politics at play such as autism is an identity of evolutionary and not disability context to prevent treatment research human rights, abortion hatreds and demanding giving people money for their own use instead of it going to research in order to change the publics mind of Autism Speaks your going to have to prove the war crimes and otherwise accused in recent years. Otherwise as this is mostly a free world and in the US a free country PLEASE do start organizations just about raising money for others things. That's what I do and I depend on my own creativity to make it happen and do not expect one bit of free help from Autism Speaks or any other organization other then my social services though the federal government gave me nearly $4,000 five years ago for it.

I can see where I overstepped my bounds there in that phrase. More specifically the research was presented in the media for the rest of the world to see and presented as groundbreaking/revolutionary research. For those in the rest of the world that saw the reports of the research it is hard to dismiss the reality of what those people saw when they looked at the reports of the research as imagination. Groundbreaking/Revolutionary = Positive.

http://yourlife.usatoday.com/health/medical/autism/story/2011/04/New-checklist-could-detect-autism-by-age-1/46590470/1




http://www.ctv.ca/CTVNews/Health/20110706/autism-causes-genetics-pregnancy-110706/



In the best of all worlds people would take no more than they needed to survive and help others. That philosophy works well in small matriarchal groups of primitive hunters and gatherers. It is not the real world, but it really is, I think, part of our basic nature that is ignored, as a result of cultural illusion and population densities of humans that don't mesh well with our primate genetics.

We don't live in the best of all worlds. I agree. But, primitive hunter and gatherer groups lacked hot showers and warm cozy beds too. We pay a high price for those hot showers and warm cozy beds, and the salaries of 501C's are part of that general issue, that is difficult to escape from.

I have no problem with your personal opinions that apply to your life and how you feel about Autism Speaks on a personal basis; I see it as a problem when someone categorically states an opinion as fact when there is clear evidence that refutes that fact, just as you see it as unjust that 501C Salaries are not in alignment with what people should accept as compensation in charitable organizations.

In the 2010 report there is a page that provides dollar amounts provided for services for Autistic people. 1.6 million dollars is a relatively small percentage of the total revenue, for financial aid, but it is certainly a positive influence on the Autistic people that it provides assistance for. They seem to be providing specific dollar amounts here and where the money goes for the aid; It seems to be a fairly transparent delivery of information on the financial aid provided for autistic people.

Down further in the report there are details on the free educational materials provided for autistic people and their families.

Hopefully in the future the organization will continue to be funded to provide these efforts, and hopefully be in a position to increase the funding. It is a constructive suggestion to provide to autism speaks that additional money should be provided in this area.



There is a pie chart that provides the following information:

You consider any old hyperbole chucked out by CTV or USA Today to represent some kind of confirmed, scientific worldview?

You have that right...but when you expect others to also accept it as conclusive evidence you insult their intelligence.

Agreed

Here are my quotes again on the research for the fourth time for you:

2. Funding for Research that has led to an early screening test for Autism that is available to parents free online; and can be used by physicians as well.

3. Funding for Research that has led to an understanding in the Scientific Community that environmental factors may play a bigger role than previously assumed in Autism, that may result in further research into the specific environmental factors that may result in the debilitating symptoms of Autism.



Notice the words may. That doesn't mean conclusive. Please don't misrepresent what I say here, to divert attention away from your fallacious statement that the organization has done nothing positive for the autistic community.

I didn't say the research was groundbreaking, I clearly indicated the media presented it that way. And I have presented information from both studies, that people can weigh for themselves, if they like.

Autism Speaks shows where 1.6 million dollars went as aid to individual autistic people here in this report. That also proves your statement that the organization does nothing positive for autistic people as a fallacious one.



You are an extremely intelligent person, I don't understand why you keep bringing up points that can easily be proven as fallacious; you are misrepresenting what the organization does, in your statement that the organization does nothing positive for autistic people.

Last edited by aghogday on 14 Aug 2011, 2:14 pm, edited 1 time in total.

As per previous post and quotes, I have never stated that the evidence was conclusive in the research, nor has the media presented it that way either. Zeraeph here is misrepresenting what I stated. All my statements are available for review in my posts if anyone can find somewhere where I stated the evidence was conclusive, in error, please post it and I will make the necessary corrections. The studies are positive developments in research for Autism, that have the potential to help many Autistic people in the future. That is neither hyperbole or a misrepresentation of the actual research that has been done.

The fallacious statement that Zeraeph has made is that Autism Speaks does nothing positive for Autistic people. 1.6 million dollars of aid to Autistic people in the way of community programs, scholarships, and other assistance, are concrete positive actions for Autistic people. It is not possible to refute those actions by Autism Speaks as anything but positive.

It is a reasonable statement that the organization needs to improve, they don't do enough, etc., they do things that one does not agree with, But, stating that the organization does nothing positive for Autistic people, is a misrepresentation of the organization, that serves no other purpose other than to unfairly vilify the organzation.

Thank you for going through the report to dig out this kind of information. I wasn't really able to fully process all of the information in the 40 pages of the report. While it's good that the percentage going to services can be calculated from the numbers, my observation that they have eliminated the specific pie chart that appeared in the 2008 report still stands. To me this is an attempt to obscure information because most people, myself included, were able to access the same information with much greater ease previously. I do strongly suspect that the removal of this chart is because autistic advocates noticed it, and used it in our criticisms of the organization.

The numbers you provide clearly indicate that not much has changed since 2008; services still make up a very small percentage of the total budget. The final quote you provide is about something altogether different. I don't consider that particularly useful information because it pretty much lumps all of their "programs" together, when to me the pertinent info is how much went to research (and what kinds of research) as opposed to the other categories. I also note that Autism Speaks oftentimes combines its "awareness" programs with fundraising, so that its numbers look better than may actually be warranted, but that's not a major point. The major point is that they're taking in a lot of money in the name of autistic people and families, oftentimes relying on families as fundraisers, without giving a whole lot back directly. No, it's not nothing. But I can't bring myself to be particularly impressed by what you list when I know how much money the organization brings in. I believe that Autism Speaks brings in $1.6 million or more in many of their annual walks individually. When you consider that, it's pretty clear to me at least that not nearly enough is coming back to the communities that are raising the money.

If you care about funding services, donating to Autism Speaks is a grossly inefficient way to do it any way you look at it. There are a LOT of smaller and more local organizations who can make better use of those funds.

So, I'm not really sure what your point is.

Your welcome.

My point was the information on aid provided to autistic people and dollars spent were clearly indicated in the report They dedicate a whole page to explain where the money goes, to me that seems more transparent than a pie chart, if one is seeking to understand exactly what and how much they fund, in the way of aid to autistic people

It didn't seem like an issue to me on the percentages because I'm one of those folks with a mathematical mind. I agree the pie chart helps a lot of people to understand the numbers easier, as far as percentages go.

Most everyone has access to a calculator though, if they don't divide numbers in their head, and want to know the exact percentage, so, while I respect your personal opinion here, in my opinion I think that page would satisfy most that wanted to understand how much and where the money goes for aid to Autistic people.

I suggested that it was a good idea for those that think that higher percentages of the total revenue should be given to autistics as aid, should express that opinion to Autism Speaks.

But, as I mentioned before, the mission of the organization is not one as stated to give direct finanicial aid to Autistic people, it is one instead of awareness and research, which has the potential to help autistic now and in every future generation of autistic people; I agree for those that wish to offer direct finanancial aid to autistic people there are other organizations that focus on that mission, that would be the ones to support if someone had the funds to do that, as I've stated before in this thread.

As also stated before though, I wouldn't really expect many autistic people to be in a position to provide dollar support to charitable organizations; in these cases constructive criticism for improvement is support for other people with Autism, regardless if one supports the organization, or dislikes the organization. In reality that is one of the few places, that many autistic people have, in influencing a large organizations like this, if they care to.

Vilification of the organization for the sake of vilification of the organization, if any dollars are lost to autism speaks because of that kind of effort, are also potential dollars lost from the close to four percent of revenue that does goes as direct financial aid to autistic people.

Where criticism is factual and warranted it is needed, but not when it is fallacious information that one is using to misrepresent what the organization is doing just to try to make the organization look bad.

Zeraeph's statement that the organization does nothing positive and the suggestion that all their actions are ultimately of negative impact for Autistic people is fallacious and serves no other purpose but to vilify the organization.

I don't agree with some of her other opinions, like the organization is getting into the housing business to make money, because they are interacting with some of the organizations that are attempting to provide additional housing potential for Autistic people, but that is just a matter of opinion based on speculation of intent, that anyone could make about most anything in life. There is no evidence for it though.

The last pie chart is just evidence that the organization is exceeding BBB standards, I wasn't trying to equate it with the other chart that was listed in 2008.

It is however, valuable information for the general public, and should be of interest to people that may still be under the assumption that the organization is not currently meeting standards for the BBB.

That was also an issue of the past, when the organization didn't provide the proper disclosure for a credit card program that was part of 1 of 20 BBB requirements, while meeting the other 19. That was an oversight, where there was obviously nothing to hide.

The organization currently meets all the requirements of the BBB:http://www.bbb.org/charity-reviews/national/human-services/autism-speaks-in-new-york-ny-1456

But without publicly critiquing the organization, how will it ever change? To me, continuing to send them money sends the message that what they're doing is okay, and I don't think it is. So I encourage people not to donate, or maybe to tell the organization that they won't donate anymore until they fund more services. If tpeoplewant to donate money to help autistic people, there are any number of other good organizations that could use the money, including many organizations that aren't autism-specific but rather cross-disability. The choices are not to support Autism Speaks or do nothing.

Also, while I prefer to stick to more fact-based critiques of the organization, I'm not sure what the big deal about "villifying" Autism Speaks is. The fact is, they've done some things in the past that are quite deserving of scorn. And not everyone is going to have the attitude of "oh, that's in the past; everything's okay because they took the video down." And that's okay.

Many of us have been critiquing Autism Speaks--for years--and still don't feel like enough change has occurred. I've said this spiel to tons of people, including the chapter leader of my city's branch of Autism Speaks. That was almost two years ago. We have the right to criticize. Indeed, as the people who are supposedly being "spoken for" in this organization, our voices should be paramount in their concerns. But in my dealings with the organization, that's not how it is. I think that's wrong, and the answer IMO is not to just give in and support Autism Speaks because they're the biggest game in town.

What if what you want them to do is not what the organization was founded to do, what others with autism want out of them and families. If the purpose is research and you don't like some of the research what gives you the right to think you can take that away from me and others? If anything I am sure Autism Speaks can generically help improve the reach of self-advocacy but as far as dictating what research can and cannot be done it's not entirely up to us but also certainly parents who have the say so of children.

The overall negative approaches tend to be ignored whereas constructive approaches to make changes seem to have more results.