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Christine_Rogers
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PostPosted: Fri Apr 09, 2010 4:25 pm    Post subject: The Ugly TRUTH about Autism Speaks Reply with quote

I've started a fb group to try and get the general public to know about Autism Speaks, please check it out, join it and share it here:

http://www.facebook.com/topic.php?topic=42359&uid=183608095328#!/group.php?gid=109130859120272&ref=ts

Here is a link to my letter that I am trying to share:

http://darwin-autismsuperherodog.blogspot.com/2010/04/low-down-and-how-low-it-is-on-autism.html

And here is a copy of the letter:

I've been writing a lot about Autism Speaks on facebook and twitter and starting petition campaigns to try and let the general public, and more importantly the businesses and celebrities who are supporting Autism Speaks, so the truth of this organization (I will not call it a charity) can get out there. I am just one small voice but there are others of us trying to spread the word and the more of us there are the better. I am going to keep on yelling with my one voice! I've had a lot of people write me and ask for more info so I decided to post a response I wrote today here.

----
You probably know that some parents and many adult autistics really take issue with the ad campaign messages that Autism Speaks puts out, and also on their funding research to enable prenatal genetic testing so families can choose to terminate those pregnancies. Those two issues though are individual's morals and choices so for me, I want to let people know that EVEN IF THEY DON'T HAVE ANY PROBLEM WITH THOSE THINGS that they still should not support Autism Speaks, and here is why; The big thing is their financial practices. This video is the easiest way to get the low-down on that. All the information in the video came from Autism Speaks own website off of their financial report.

http://www.youtube.com/watch?v=8fc_qtWxMes

They are not recommended by the US Better Business Bureau's Charity Review;

http://www.bbb.org/charity-reviews/national/human-services/autism-speaks-in-new-york-ny-1456

This letter was written by Cindy Waeltermann. She was Autism Speak's employee who was the director who organized all of their walks, until she found out what was really going on and she left. Now she is the director for Autism Link. After their 2009 financial report was published she wrote this letter:

~~~~
Autism Speaks. It's a Living
Autism Speaks recently announced on their website that due to the poor economy they have to "postpone" grant making and giving for 2009. Yes, this charity that hauled in a reported $68 million in funds last year has fallen on hard times. Sad, really, on the surface. But dig deeper. I ask you to consider the following information, taken straight from this organization's IRS 990 form on their own website:

Geraldine Dawson, Chief Science Officer - Salary: $669,751
Mark Roithmayer, President - Salary: $400,413
Peter Bell, Executive Vice President - Salary: $265,981
Glenn Tringali, Executive Vice President - Salary: $255,256
Alison Tepper Singer, Executive Vice President - Salary: $201,942
Amount Spent on Travel: $2,873,667
Credit Card and Banking Fees: $989,344
Premiums: $1,452,807
Management Fees: $2,038,024
Advertising and Promotion: $2,108,778
Temporary Help: $718,686
Income: $65,826,829
GRANTS PAID OUT: $27,593,390

Now I ask you, does this look like an organization that is suffering? It looks, to me, to be an organization that cares more about highly paid salaries, posh offices on #2 Park Avenue in New York, pricey fundraisers and getting it's name in the newspaper. They seem to exist solely to pay salaries and throw parties.

But hey, they've fallen on hard times. So can someone please tell me why the first thing to go is the grant making and giving -- the one thing that they claim as their #1 mission? To give grants to find a cure for autism? And don't they seem a little top heavy to you? A $700,000 salary?? Four Executive Vice Presidents?

Autism Speaks is gaining quite a reputation in the autism community. The come into a town near you with their sweeping public relations teams, hold their annual "walk for autism" dog and pony show, sucking every last dollar out of the community, only to take it back to those posh #2 Park Avenue offices. While it may seem like a noble cause, the main result of Autism Speaks' tactics is that LOCAL organizations that actually HELP people in your very own community by providing services and supports end up begging for funding. How long are we, as an autism community, going to close our eyes to what's really going on here? The big corporate New York "show" organization is going from town to town like an infestation of locusts sucking out every last dollar that they can in order to pay 68% of its income in salaries and overhead.

The average corporation or Joe on the street doesn't have time or inclination to investigate the charity. After all, they're so well known and have such a bevy of Hollywood stars behind them, they have to be legitimate, right? Well, I'll leave that for you to decide, but I urge you to look at their official IRS 990 form, right on their own page, and do a little bit of math. Maybe you will open your eyes to reality, and take those walking shoes off, give to local organizations, and tell Autism Speaks to walk off.

Many adults living with autism have done just that and have even gone to the extreme of protesting their walks and events. Jerry Seinfeld, one of their performers, was confronted by an adult with autism, http://www.youtube.com/watch?v=iH2otG... - in which he was completely blown off by the star. Their controversial "I am autism" video controversy was even recently covered by Time Magazine: http://www.time.com/time/health/artic....

Dozens of websites and blogs from around the globe are condemning Autism Speaks for their spending habits, their scare tactics and their treatment of the "neurodiverse" community. Their Washington, DC, New York, Ohio State University, and several other locations for the annual autism walk have been picketed and protested by individuals with autism as well.

Even when Autism Speaks was in its infancy, the co-founders of the organization told their daughter publicly (the mother of the child with autism who was the impetus for starting the charity) that she was not allowed to speak for them in any capacity. The story ended up on the front page of the New York Times: http://www.nytimes.com/2007/06/18/us/...

With a history mired in controversy and upheaval, Autism Speaks has been at the Center of debate in the autism community for quite some time, but now even die hard AS supporters are starting to see the light. I used to be one of those supporters.

Pittsburgh was the very first walk for autism in the country, and I was involved from the get-go. I did their newsletters, coined the whole "Walk Talk" concept, produced and edited videos for them, and helped raise thousands of dollars for this organization over the years. Luckily, someone opened MY eyes to the truth, and I stopped supporting them and began trying to educate others on how they actually spend their money.

And, hot off of their website from today:

Announcement of Budget Reductions for Continuation Years of Autism Speaks Research Grants

"In view of the serious challenges that the economy is facing, Autism Speaks made the difficult decision to institute budget reductions of 15% for all grant payments in FY2009. This includes most of the grants awarded in December 2008 as well continuation budgets for grants originally awarded prior to December 2008. Thus, if your second- or subsequent budget year commences in 2009, a 15% reduction will apply and you will be asked to submit a modified budget for the remaining years before the continuation award will be activated. Please note that Pilot and Fellowship grants are not subject to this reduction. These changes were instituted to continue funding as many research projects as possible and we regret any difficulty that you may encounter because of the reduced budget."

I wonder if the staff took a 15% wage reduction? So does this mean that projects that were already promised funding won't be fully funded? That this will result in layoffs and the research not being completed? Sounds like it to me.

I urge everyone to please take the time to read the IRS 990. The proof is in the pudding - right there in black and white for everyone to see. Don't be a kool aid drinker - educate yourself and get the facts before you walk even one more step for this organization.

Cindy Waeltermann
Director, AutismLink
~~~~~~~

Also a good place to go for info is Dana Commandatore's site, Rethinking Autism. She is the wife of the actor Michael Broderick and they have an autistic son. They are trying to use their contacts to spread the word about what is really going on.

http://rethinkingautism.com/RethinkingAutism/Home.html

Another place I go (and one that has really influenced my opinions) is to Wrong Planet. It is a social networking site both for parents of autistic children but more for adults on the spectrum. Reading what they have to say and getting their opinions and thoughts, feelings and ideas on things has been a real eye opener and a blessing.

http://www.wrongplanet.net/

It is all really sad that this has happened.

Love,
Christine


If you agree with me please join the group on facebook and share it with as many people as you can.
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Inventor
Phoenix
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PostPosted: Sat Apr 10, 2010 1:47 pm    Post subject: Reply with quote

Sounds like someone who lost their job, at Autism Speaks, could not get another, so they are starting a micro carbon copy of Autism Speaks?

2008 gave everyone a tax deduction, giving did fall, but costs don't.

It costs to live in New York, and $100,000 there goes about as far as $50,000 in the rest of the country.

That the top people are making two or five times that is low by corporate standards.

So someone from Pittsburg had a job at 2 Park Ave. Then when donations fell, the were let go, and went back to Pittsburg, and now run a Blog, and Facebook page, about their old employer.

Welcome to the Black List Cindy, no corporation will ever hire someone who did what you are doing.

I see nothing about autism, no plans, no insights, just an ex employee airing what they claim is dirty laundry in public, and looking to continue to fund their existance off of autism.

Worked for Autism Speaks, so not Autistic.

From the numbers, Autism Speaks raises about $0.15 per person in America, $0.10 is given to Science for the study of Autism.

Taking one in a hundred, about $10 per autistic person. Direct support, after the cost of mailing, would be $8 per autistic, but most of them would eat the check, and do not have a bank account.

I would pass on direct support, and do think that research at $10 per person per year is low.

Assisted living costs over $100 a day, just Disability over $20 a day.

$10 a year is $0.03 a day looking for an answer in Science.

Just my $0.03 worth.
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pandd
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PostPosted: Sat Apr 10, 2010 4:57 pm    Post subject: Reply with quote

Inventor wrote:

From the numbers, Autism Speaks raises about $0.15 per person in America, $0.10 is given to Science for the study of Autism.

The overwhelming majority of which is spent on research whose only obvious application is eugenics. Maybe you think you would be better off aborted before you were born, but many people with Autism find their lives valuable.

Meanwhile, how much money is spent on making the lives of Autistic people better? How much Autism Speaks money is put into advocacy of our political and legal rights? Very little is the answer to the first question, somewhere around none seems to be the answer to the second question, and the answer to both questions combined is a lot less than is spent demonizing us in propaganda intended to raise money for executive salaries and more research whose only obvious application is our genocide.

Imagine if a group calling themselves homosexuality speaks tried this crap...it would be immediately considered a hate group and the celebs sure would not line up to support it.
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Phoenix
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PostPosted: Sun Apr 11, 2010 1:27 am    Post subject: Reply with quote

"Obvious application is our genocide" ?

The funding of genetic study has shown that twenty two sites on the DNA are involved, more or less, swtiched on or off, and no single point like Downes that could be used as a marker for abortion.

This research was paid for in part by Autism Speaks.

The group John Elder Robinson was appointed to had a few in Genetics, a lot more in Psychology, Psychiatry, with a lot of speech, behavior, and so if they plan to off us, it will be done by doctors and therapists in office.

Who's life could be made better for $0.03 a day?

One in 10,000 will spend their lives in locked wards.

One in 1,000 will spend their lives in assisted living.

One in 100 will live in the world, but it could be better.

Our problems do not come from a lack of political and legal rights, they come from Autism.

I am with Claradoon, who is older than me, and wants the social skills training that is now being given to three year olds.

It works, an Autism Speaks funded project, and we never got it just living.

"The Guidebook to Earth for Autistics," is being written, and I want a copy.

Why? Because as a HFA, I find there is a lot about Autism that I do hate.

If the children of the future can be helped through a difficult childhood, often lasting till they retire, and then some, it will be a better world.

For those who think they are being demonized by propaganda, a few weeks in the LFA locked ward will change your mind.

The effect of all study is moving the line between those who will spend thier lives in assisted living, and those who can live in the world.

You are protesting the best chance that one in 1,000 have of not spending life in a Group Home.

You are protesting the best chance that those who live in the world will live better.

These are the children of the future, childlike adults, and there is are moral, ethical, legal, reasons to give them the best care we can in this imperfect world.

The protesters are few, offer no program, only demands to be seen as perfect as is, and demand more support.

I do not think I am perfect, and what limited means we have should be put to use with the children where it will do the most good.

Adult autistics do not even come in second, that place should be for the parents of autistic children.

With limited funds, limited knowledge, we must put our efforts where it will do the most good for the most people.

These are the early days of autism awareness, it will take a generation, and we must continue to develop the Future of Autism.

Life can be better for millions.
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zen_mistress
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PostPosted: Sun Apr 11, 2010 1:42 am    Post subject: Reply with quote

^ help for people with autism and AS can be achieved, by smaller groups who actually care about people with autism, and are not a monstrosity which calls itself a "charity". I had no idea they had offices on Park Avenue, and I am actually surprised- I didnt really think a charity would have the audacity to use their budget for luxury premises like that.

I used to work for a good children's charity and the founder was so determined that as much money as possible would go towards helping children (not plotting to abort them I might add) that I had to work in a small, cramped office with rickety stairs, even the kitchen tap hardly worked because only essential costs were allowed and the monthly budget had been exceeded. And that is how a charity should be- run by good people, and doing things for good reasons.
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Phoenix
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PostPosted: Mon Apr 12, 2010 4:34 am    Post subject: Reply with quote

Venue donations, it is in the report.

The use of office space, and the venues used for fund raisers.

Autism Speaks is not perfect from an autistic point of view, but they are really good at working the world.

As a 1% minority we would never be heard, add social disconnect to that, recluse, and a spectrum of symptoms, and we could never bring awareness to the mass.

We are not going to die from autism, we are not a great danger, there are few sales points that could work. We are not even contagious.

The study of autism has been by a few oddballs who took an interest. Asperger, Wing, Attwood.

As far as I can tell Asperger had less than ten type cases, most of science has been done with less.

Autism Speaks has added nothing to the science but money. People will study what they are paid to study.

Autism Speaks lives in the real world.

They put on a show, raise money, and direct science through funding.

My Special Interest is the Corporate Model. If you want to do something that is much too large for a person, a group, this is a structure that works. It does not matter what, even if you know what you are trying to do, it is a machine.

Autism Speaks is a machine, turned to learning everything about autism. It is the model that runs most things, it is working for us. If it had the answer, it would have no reason to exist.

Autism Speaks poses the question, "What is Autism?" They do have millions to put toward an answer.

Answers are replacing guesses, we start over based on new knowledge, and do it again.

It is the way humans do something, and it is being done well.
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pandd
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PostPosted: Tue Apr 13, 2010 3:01 am    Post subject: Reply with quote

Inventor wrote:
"Obvious application is our genocide" ?

The funding of genetic study has shown that twenty two sites on the DNA are involved, more or less, swtiched on or off, and no single point like Downes that could be used as a marker for abortion.

You realize of course that the funding decisions in respect of this research were made before the outcome of the research was known?

Quote:
Who's life could be made better for $0.03 a day?

Actually it would be helpful if Autism Speaks simply stopped spending money in ways that make out lives worse, for instance if they would stop producing hateful scare-mongering propaganda about us.
Quote:

Our problems do not come from a lack of political and legal rights, they come from Autism.

Our problems entail a lack of political and legal rights. People with ASDs would benefit from a strong political lobby and from the availability of strong advocacy.
Quote:

If the children of the future can be helped through a difficult childhood, often lasting till they retire, and then some, it will be a better world.

Is having one's mother talk about a desire to kill one a less difficult childhood?
Quote:

For those who think they are being demonized by propaganda, a few weeks in the LFA locked ward will change your mind.

I do not believe it would. I think that such wards are actually destructive places (and the evidence from the follow-up to Kanner's initial subject group certainly seems to demonstrate that institutionalization is very very bad for Autistic people) and frankly I think that Austism Speak's propaganda does not encourage families to keep their Autistic relatives in a family home environment. I think the kind of propaganda Autism Speaks produces is more likely to influence people to place their Autistic relatives in such places.
Quote:

The effect of all study is moving the line between those who will spend thier lives in assisted living, and those who can live in the world.

Unless you have specific evidence that the research conducted by Autism Speaks has this effect, I will have to assume that this is obfuscation on your part.

Quote:
You are protesting the best chance that one in 1,000 have of not spending life in a Group Home.

I do not believe that is the case. If you can substantiate otherwise without obfuscation, weasel words, tangential arguments that actually have nothing to do with the core issues and pseudo-mystical pronouncement, I will be more than willing to give fair and honest consideration to your argumentation or evidences.

Quote:
You are protesting the best chance that those who live in the world will live better.

These are the children of the future, childlike adults, and there is are moral, ethical, legal, reasons to give them the best care we can in this imperfect world.

None of which in my view is consistent with spreading hate speech, fear, ignorance and scapegoating us as marriage ruining, stolen entities who cause our parents to want to kill us and commit suicide in the bargain.
Quote:

The protesters are few, offer no program, only demands to be seen as perfect as is, and demand more support.

I guess the same criticism could have been made about people who were anti on the KKK a century ago.

Quote:
I do not think I am perfect, and what limited means we have should be put to use with the children where it will do the most good.

What on this earth has being perfect got to do with anything at all? I do not see anyone in this thread claiming they are perfect, to my knowledge claims of being perfect do not tend to feature in concerns about Autism Speaks and no one I know is demanding that Autism Speaks be perfect.

Quote:
Adult autistics do not even come in second, that place should be for the parents of autistic children.

With limited funds, limited knowledge, we must put our efforts where it will do the most good for the most people.

I do not accept that living people should be chucked on the scrapheap. I do not perceive that the wellbeing of an adult is somehow less important than that of a child. Sorry if that is not PC trendy enough for you, but I personally do not judge the value of a life or the value of quality of life on the arbitary basis of age.

Quote:
These are the early days of autism awareness, it will take a generation, and we must continue to develop the Future of Autism.

Life can be better for millions.

And would probably get better at a much quicker pace if Autism Speaks did not exist.
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lau
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PostPosted: Tue Apr 13, 2010 5:42 am    Post subject: Reply with quote

pandd wrote:
...
And would probably get better at a much quicker pace if Autism Speaks did not exist.

I wouldn't bother with the word "probably" in that sentence.
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DaWalker
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PostPosted: Tue Apr 13, 2010 6:09 am    Post subject: Reply with quote

^
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Asp-Z
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PostPosted: Tue Apr 13, 2010 6:52 am    Post subject: Reply with quote





More on the financials of that hate group.

Click here for a lot more info on them

I am 100% against this horrible "charity", as far as I'm concerned them and their massive salaraies can go burn in hell.
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kreb1958
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PostPosted: Tue Apr 13, 2010 9:47 am    Post subject: Reply with quote

Big Begging Bowl with Bling!

Really, "Autism Speaks" is the only one of many large charities that runs like a corporation.

The main issue is the %age of donation actually being delivered toward the aims of the charity. As such I find that this value is 41.9%, which is substantial, but perhaps lower than would be expected. In any large charity, costs and salaries are deducted - but a charity's reputation is also dependent on how it deals with its finances, eg. transparency, not being extravagant, as well as delivery of funds towards its aim.

Ultimately, one can donate to other smaller but more productive charities.
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preludeman
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PostPosted: Tue Apr 20, 2010 9:56 pm    Post subject: My 2 Cents Reply with quote

Interesting and they want "to help" us .
They need to help themselves --- over a cliff. Twisted Evil Twisted Evil
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danieltaiwan
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PostPosted: Wed Apr 21, 2010 3:29 am    Post subject: Reply with quote

I don't like autism speaks because they use scare tactics to advocate there views without verifying facts.
They show most autistics as having little functioning and increase negative awareness.

Pity is worse than hate. It makes you feel like you are defective that needs to be stopped. Autism Speaks advocates that. Which makes me dislike them. The IRS needs to crack down on them.
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Arminius
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PostPosted: Mon Apr 26, 2010 5:26 pm    Post subject: Reply with quote

I agree. I take issue with the numbers, but the scare tactics are more insidious.
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rossc
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PostPosted: Fri Sep 17, 2010 9:53 am    Post subject: Reply with quote

Interesting thread. Must read for all. Especially in light of the Autism Speaks deal brokered with Alex
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