Marc Rosen of Examiner.Com: Why Autistic People Don't Like Autism Speaks

This is an excerpt from the Long Island Autism guide for Examiner.com, Marc Rosen. Autism Speaks has created strange bedfellows, have they not?

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? 

Read the full Examiner.com post HERE.

 

Comments

[Ridiculous]

http://www.nashobalearninggroup.org/events.htm

A big thumbs DOWN to this ABA center for teaming up with Autism Speaks to take yet more money from cash strapped parents in order to benefit themselves. I guess the $100,000 per student tuition just isn't enough for this duo.

[Gahana108Can'tBeSerious]

Gahana,

I'm wondering if Gahana108's YouTube Channel is yours. If it is, do you really believe that our children with autism are more advanced beings, that a loving God sent them to us teach us how to awaken our vibrations, and that all it takes to get a nonverbal autistic child to talk, is for mother and child to get their vibrations lined up?

http://www.youtube.com/watch?v=8cG3BOFIjTo

[Dadvocate]

Madvocate- Not sure where your earlier numbers came from but in '08 AS awarded $830,000 in community grants, not $66K.
http://www.autismspeaks.org/community/family_services/grants.php
Grant numbers been going up steadily but it's a lot lower percentage of their budget than I'd like to see...so I push AS to increase it whenever I can (a note with my donation, emails, arm twisting leadership at functions, etc).

Thomas - I really hope AS will reach out to you to assume a leadership position. I have long advocated their outreach to any self advocates who have the desire to positively contribute and, as your post demonstrates, you have the skills and experience to have a huge positive impact on the organization. I do know that some outreach has taken place from AS to some (away from Dr. Shore)self advocates to work on areas of mutual interest but they've been rebuffed. It's too bad but doesn't surprise me.

[Stagmom]

Thomas, thanks for your thoughtful comment. Our sponsors have been around longer than Autism Speaks - which is really NAAR in nicer office space. AS has done a fine job with awareness - no doubt about that. And we've needed that. And they also work very hard for insurance issues, within a narrow scope that is in keeping with their overall philosophy of treatment perhaps, but engaging the insurance industry has been important too.

Stephen Shore presents along with folks familiar to AoA at autism conferences including Autism One. Dan Olmsted, David Kirby, Barbara Fisckin and I have the pleasure of sharing the state with him at an Autism Conference in NY next month. We admire and respect him very much.

Have a good weekend.

Kim

[Madvocate]

Continued from previous post...

And the bucks just keep rolling in.

http://www.autismspeaks.org/press/seinfeld_springsteen_concert.php

It should be an excellent quarter for Autism Speaks, Inc.

[Thomas A. McKean]

I have autism and I do not have such hatred for AS as others do. Like Lenin, I question the validity of the "Aspies" - especially the self-diagnosed ones. While I have no doubt some are valid, I also have no doubt that many of them are people who have just "decided" to be Aspie. The absolute pride and superiority they show angers me no end, and sets the advocacy I have done myself in the field back a good 20 years or so. They hurt their own cause and don't even know it.

I have not really looked into where the money goes from this organization enough to comment on that. I have been meaning to. However, even without that knowledge, there are two things that bother me about this group. First is the lack of moderation in the forums. They allow fighting and bullying to go on, with the "Aspies" meanly and viciously attacking the parents who only want a future for their own children. The fact that AS has constantly allowed this to occur is indefensible and I have no doubt has also cost them millions of dollars! (If I had the money and I saw what they allowed in the forums, yew better believe I would take my money elsewhere!)

The other problem I have with them is what has already been mentioned, in that there is very little participation from the autism community itself with this group. That doesn't surprise me, because back when I was serving on the board of directors of the Autism Society of America, there were more than a few board members who resented my presence there. Hopefully times have changed enough that Stephen Shore does not currently have that same problem.

I know my name has been kicked around a few years or more as a possibility of a token autistic on the AS board. This would be a difficult choice for me, and one I have not had to make yet because, while others have asked me to serve, AS itself has not as of yet.

And finally, I do have to give them props for one thing. Back when I was the ASA, we were it. We were da bomb. We were the place to go for autism. Now that is no longer true. It definitely appears that AS has taken over that top spot that was once held by ASA. And they did it rather quickly after they were formed. That alone is quite amazing to me. Well done, Autism Speaks! Now if yew could only get the rest of your act together!

One more thing: Unlike the Aspies, I have absolutely no problem with looking for a cure for autism.

[Madvocate]

Autism Speaks spent $17 million on its employees, but just $66,670 on grants to individuals and communities?

Sounds like a brilliant corporate strategy to me. Perhaps another part of that strategy was to throw a bone at those who question vaccine safety, without offending big Pharma, big Medicine, big Government and big Media.

One headline we'll never see is "Autism Speaks Cures Autism." Why would AS want to shrink their market with such a huge payroll to maintain? Funding research to isolate a non-existent gene is good for the company.

When people walk for Autism Speaks, they're funding the salaries of a high-rent Manhattan office full of people who make themselves busy doing something - anything - having to do with autism.

Autism Speaks doesn't have to talk the talk. All they need are enough uninformed people to walk the walk.

(Although I do agree with Dadvocate that it's silly for Marc to complain about not being included in an organization whose mission statement he abhors.)

[Gahana]

Kathy,
You can not seperate the Autism from the person. I have been in the field for over 20 years, and I have rarely seen such a case. By the way, I'm not on the Spectrum. I truly respect people on the spectrum, and have met some INCREDIBLY AMAZING and BRILLIANT!! *some have their Masters and PhD
s. (more than Temple Grandin) Many NT can't even say that. If society keeps on saying that Autism is a disease/disorder we're never going to get anywhere! Start seeing the Gifts of Autism, and the world will look different. I understand why many Aspies don't want to cure their Autism. It would be destroy who they are. The REAL experts are the folks who are ON the Spectrum, not the so-called folks who "Study" about it, without true experience.

[Cherry Sperlin Misra]

Dadvocate, You could be right but on the other hand beware the possibility that Autism Speaks is in reality the Trojan Autism Speaks- Niftily taking attention away from other organisations and always ready to pull the carpet out from under our feet when we think we are about to achieve something- Is that not what happened with the Advisory Committee fiasco? Regarding destruction of autistics prebirth, we have already seen Simon Baron Cohen test those waters with his big toe.
Lets imagine that tomorrow one more of those endless claims of finding the gene for autism gets some attention in the media. Now someone says- How nice- Now parents dont have to have an autistic child (ie they can abort the child) So what happens- All of us dogs and cats wont be sharing the same beds anymore- We will be tearing at each others throats while the vaccine manufacturers laugh all the way to the bank. The clueless public will once again take away the idea that autism is genetic and we are back to START - and how much time will be wasted. The tactics of the opposition are DELAY AND DISTRACT. For heaven's sake lets not fall into that trap.
I would suggest that we need to take the initiative right now, to steer the discourse in a better direction. For example there could be a theme illustrated with a pistol, and the words " They tell us environment pulls the trigger for autism. So whats in the environment? " Im sure other people here can suggest something better- but you get the idea

[curtis]

The one thing that "Autism Speaks" does very, very well is to "walk in circles" all over the nation.

If they can just get another thousand people to walk another thousand circles, in another thousand cities,

they hope to find something....