Why autistic people don't like Autism Speaks (Article)



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sinsboldly
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10 Sep 2009, 9:03 pm

September 7, 2009 Long Island Autism Examiner Marc Rosen

Why autistic people don't like Autism Speaks Article wrote:
Autism Speaks is easily one of the biggest and loudest voices talking about autism. However, it is also one of the most despised among autistic adults. There are various reasons, many of which involve where their money goes, the stances they take regarding issues that are important to autistic people, their outright refusal to have autistic adults on their board of directors (autistic people do not even have a token presence in Autism Speaks's leadership), their continual use of pity advertising, their unreproducable facts and figures, and their insistence that autism is universally tragic and that autistic people should not exist (their insistence on "curing" autism, which can only be done if a prenatal test is designed to facilitate the decision of whether or not to abort the fetus). Luckily, there are other organizations that are more favorable to the autistic community, though that's for another article.

Autism Speaks has released its 2008 990 tax return form, which is the primary source of the following information regarding its finances. According to their 990, Autism Speaks has 36 employees who were compensated over $100,000 this year. The highest paid employee listed, their Chief Science Officer, Geri Dawson, was compensated $644,274. That's better than most people make in fairly good positions at Fortune 500 companies! Shockingly, she makes more than the five people listed in the form as "highest compensated employees", who are listed as being compensated less than $150,000 each by Autism Speaks. Where's the rest of that money that they didn't report, and how much is it to make them more highly compensated than someone getting almost $650,000 from a non-profit organization? All of the "highest compensated employees" are in some sort of administrative or "relations" position, meaning that they're part of the Autism Speaks bureaucracy and overhead, except for one who is listed as "Senior Policy Advisor and Counsel", which could mean that he's part of their oversized legal department, known for threatening people who make t-shirts or parodies to express their displeasure with Autism Speaks (false allegations of copyright violation were the bulk of those cases). Not including federated fundraising money, Autism Speaks spent over $1.7 million on fundraiser expenses, and made only $142,693 from that investment (that's the net gain, or what's left after that $1.7 million+ is subtracted from the total monies gained from the fundraisers). In total, they spent $17,756,876 on employee salaries, pensions/401ks, benefits, and payroll taxes. By contrast, their grants to individuals and communities totaled a paltry $66,670, not even a drop in the bucket compared to their total reported expenditures. Based on that information, it is clear that Autism Speaks does very little with their money to help autistic people and their families, and I haven't even shown all the reputation-damaging financial information I have on them from their 990.

Another huge reason why autistics hate Autism Speaks is their film "Autism Every Day", in which they film their then-Executive Vice President, Alison Tepper Singer, saying that when her daughter was first diagnosed, she seriously contemplated driving her car, with her autistic daughter inside, off a bridge. Her only reason for not acting on this, according to her own statements, was that she had a neurotypical daughter waiting for her at home who needed her. By her own admission, apparently, she would have preferred to murder her own child than to have an autistic child. There are parents who actually HAVE murdered their children and claimed that it was a mercy killing because said child was autistic. For more information on the minimal sentencing many of these killers got, see thiswayoflife.org/murder.html. Those are all autistic people who were killed/murdered as a direct result of the fact that they were autistic. Statements like those in "Autism Every Day" glorify and seem to excuse these horrific actions, lending justification to a parent murdering a child for having a disability. This was originally designed as a form of pity advertising, but has become a destructive influence in autism politics since its release. On a side note, if one looks at the page I linked to, one would find quite a few murder/suicides, which may be in part inspired by Ms. Singer's remarks.

There are many more reasons why Autism Speaks is harmful to autistics, and why autistics continue to insist that Autism Speaks does not speak for them. However, it would take too long to disclose them all in a single article, so I limited it to the top two. Since Autism Speaks is headquartered in New York (in a Park Ave. high-rise, no less), I do hope that they'll read this and respond. After all, you keep saying that you're listening. Try listening to autistic people who are telling you to go away, for once.


http://www.examiner.com/x-21742-Long-Is ... ism-Speaks


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Aoi
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10 Sep 2009, 9:20 pm

Fascinating article. I'm still learning about the "politics of autism" but have a difficult time following it all (perhaps due to my AS?) and so even after browsing the Autism Speaks website was confused as to their stance on various issues. But numbers I can easily understand, and if this article is accurate, the numbers (i.e.: the salaries) make me wonder.



demeus
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10 Sep 2009, 9:23 pm

Interesting no less that Allison Singer actually responded.



Peko
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10 Sep 2009, 9:26 pm

Besides the usual complaints about Autism Speaks, how can a nom-profit org. have employees making over 3 grand? :?


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10 Sep 2009, 10:33 pm

I'm glad that Alison Singer has responded. She admitted her errors and I believe that she may have mis-communicated. I can understand how she may have been frustrated with the system as much as I was frustrated in trying to communicate. I'm sure I am going to catch a huge amount of heat from others in the neurodiversity movement, but I'm willing to forgive and forget once someone realizes their error. I'm also glad that she has left Autism Speaks. Autism Speaks is a horrible organization that I believe is a danger to autistic people everywhere. We have become human revenue streams for so many unscrupulous people. From the revenue information I see on this post, I believe that is what we are to Autism Speaks. I am a member of their forums for the simple reason of being able to reach parents of autistic children. Many parents are brainwashed by Autism Speaks and like organizations into believing that the lives of autistic people are hopeless.

I am severely autistic and have accomplished much in my life. I am self taught in many different professions. I am also a college graduate and was a member of the Navy. Many people for whom I worked were glad to have me on their payroll. In fact, employer recommendation is how I have gotten most of my jobs. Those who think that autistic people, even severely autistic people cannot accomplish anything are terribly wrong. While there are those of us who may be very low functioning, the majority of us do have quite a bit to contribute to society. Each of us, like other people, are different. Some of us succeed, and some of us fail. Some of us are good people, and some of us are evil. We are people. We are not empty shells, and I wish the people of Autism Speaks would come to realize this and put the resources given them to good use instead of high salaries and perks.


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10 Sep 2009, 10:59 pm

Autism Speaks does not speak for me. I speak for myself. Autism Speaks portrays autism as being a life sentence. It is not a life sentence. They tell porky pies (lies) about how they think that every person on the spectrum are the same. I would like to see them take a ball of chalk (walk) off a cliff. I can't Adam and Eve (believe) that the majority of people fall for their crap. I wish that the people at Autism Speaks would shut their cake holes (mouths), for once.


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10 Sep 2009, 11:09 pm

Thank you for sharing that article that elucidates why. One issue that is disturbing: For those of us in research (science), Autism Speaks insists on 'pushing' their agenda, even denying our pioneering scientists that are defining the field - shameful.

Painful to hear on the radio (or equivalent) "Let's sack Autism!" Lab Pet is Autistic, so they are in effect 'sacking' me. And cyberscan, others - these are models for what Autism is about! But Autism Speaks is invasive and pervades science research funding, media, and more. I suspect Autism Speaks will lose more credibility as they become known. Autism research is evolving, and this is good! In fact, many aspects of Autism can/are being applied to help those in need, such as patients who have had a TBI (traumatic brain injury), Alzheimer's, stroke, etc. Think of how the memory that can be associated with the Autistic mind can help those in need. Those savant abilities have potential palliative effects for other individuals. Plus the science of mirror neurons (thank you, Dr. G. Rizzolatti!) and plenty more. Learning is the way, not shunning or shaming. Maybe for those Autists who are confined, where they cannot express, we can find a way - Autism Speaks is not the way (but they do have money, due to their affiliates). Science is, and understanding. Acceptance and support. Knowing.

Just think of the gifts Autists have contributed, and will contribute in the future. This is one reason I am pursuing that PhD.


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11 Sep 2009, 3:10 am

I had no idea that they were failing so miserably at the basic formulas for a non-profit.

And to the poster who asked:

Most non-profits have salaried employees making near-normal salaries for their skill types. A large non-profit will need a decent accounting department, and pay outside auditors. The question isn't whether such pay outs exist, but if they are kept as low as possible, and if the organization is putting as high a percentage as possible into program service.

Of course, the highly paid scientist at Autism Speaks would qualify as a program service expense, since research is part of their exempt purpose. But the amount earned? Is that really necessary to have decent talent? I am friends with a known diabetes researcher and he'll be the first to tell you that medical research isn't exactly a high paying field. That salary does rasie questions, as does the profit margin on fundraising events, and so on. But, on their own, the existance of high salaries isn't shocking. Its how that it all fits into the bigger picture that needs to be looked at.

More and more this organization looks like one that is more interested in the non-profit equivalent of market share than any useful results.

PS - I posted a comment in the link, if anyone is interested.


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AspieFireMan
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11 Sep 2009, 8:28 am

CockneyRebel wrote:
Autism Speaks does not speak for me. I speak for myself. Autism Speaks portrays autism as being a life sentence. It is not a life sentence. They tell porky pies (lies) about how they think that every person on the spectrum are the same. I would like to see them take a ball of chalk (walk) off a cliff. I can't Adam and Eve (believe) that the majority of people fall for their crap. I wish that the people at Autism Speaks would shut their cake holes (mouths), for once.


http://www.zazzle.com/customizable_your ... 5994958702



CockneyRebel
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11 Sep 2009, 10:35 am

AspieFireMan wrote:
CockneyRebel wrote:
Autism Speaks does not speak for me. I speak for myself. Autism Speaks portrays autism as being a life sentence. It is not a life sentence. They tell porky pies (lies) about how they think that every person on the spectrum are the same. I would like to see them take a ball of chalk (walk) off a cliff. I can't Adam and Eve (believe) that the majority of people fall for their crap. I wish that the people at Autism Speaks would shut their cake holes (mouths), for once.


http://www.zazzle.com/customizable_your ... 5994958702


I love those shirts. They're brilliant! :D


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SarasDad
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12 Sep 2009, 5:45 am

We should also look at the good they are doing


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Last edited by SarasDad on 15 Sep 2009, 11:26 am, edited 2 times in total.

cc469
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12 Sep 2009, 10:36 pm

I have skimmed through the thing .
it's useful for copy-paste propaganda thats if I would ever get to have to voice an opinion about this issue which I doubt since I don't go around these forums online or irl.

(Hell yes don't ever type stuff when you argue over the internet for more than a few edits)

I don't know you are convincing the convinced



cc469
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12 Sep 2009, 10:39 pm

SarasDad wrote:
LabPet wrote:
I suspect Autism Speaks will lose more credibility as they become known.


It appears their target audiences are young parents with young children. This helps to keep their followers scared and uneducated. The parents are painted a worse case picture of what life will be...but with hope if they act now!

I believe as parents get better educated, they are more likely to question the information that is blasted to the public, but unfortunately there is a stream of new parents waiting to take their place.


it's very hard today for people to be educated if that means knowing what there is to know.
I mean we do have the internet as some universal data base but the desire to learn new information about random subjects is little in the whole population nor the ability to remember and use it :/

so yeah if there is a genetic test for autism and as it will be assumed it is too "risky"
this does have some serious potential to devastate humanity as a whole if certain human biological caste theories are correct.



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14 Sep 2009, 3:41 am

If Autism Speaks is spreading false information, why don't we counter and set the record straight? I was thinking of maybe a collaborative video with some little short testimonials from people living with a form of autism who do not see it as the tragic affliction that Autism Speaks does. Throw in some facts and figures, maybe something about the contributions people with autism have made to society or something. I don't know, I'm just spitballing. But if anyone is interested, maybe reply or message me or email.



dalekaspie
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15 Sep 2009, 9:57 am

autism speaks = third reich


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