Not Autism Speaks
Not Autism Speaks is a new website offering a viewpoint of Autism Speaks that is more in line with myself and some (many? most? I hope so) other Hub members. This is from their home page.
Greetings. If you’ve arrived at this site, it’s probably because you were looking for information on the well-known charity Autism Speaks. What you may not know is that, while this organization maintains a veneer of non-controversiality, you should carefully consider supporting Autism Speaks or relying on them for information.
In a nutshell: Why you shouldn’t support Autism Speaks
- They have produced propaganda which demeans autistic individuals and may encourage “mercy killing”
- They do little to actually assist autistic individuals
- They censor bloggers and website owners who criticize them
- They fund research that many autistic people consider objectionable
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Tags: asd, Not Autism Speaks
June 27th, 2008 at 3:04 pm
Thanks for posting this! I’ve already added it to my own anti-Autism Speaks lens on Squidoo. You should stop on by and voice an opinion.
I’m really glad to see the recent rebirth of criticism of Autism Speaks. Anything to help this “charity” be exposed for what it is can only be a good thing.
June 27th, 2008 at 3:17 pm
you have absolutely no proof they censor people who criticize them. If you are talking about the NT speaks parody this person had a website that copied their graphics which is copyright infringement. The case of the zach t-shirt thing they are denying they were involved with this and zach and his supporters have produced zero credible evidence to the contrary. In fact autism speaks has a message board in which all opinions are welcome and people who don’t like them bash them and insult them constantly and they don’t mind.
June 27th, 2008 at 6:39 pm
Not Autism Speaks is using a “Tokelau” domain. That should slow down the AS lawyers a bit.
Joe
June 27th, 2008 at 7:49 pm
Jonathan: I only know how I have been treated, as an adult with autism by the local chapter (or whatever it is) of Autism Speaks. I am very active in our local Asperger’s Syndrome/High-functioning Autism group and tried to talk to the local Autism Speaks representatives who came to speak at a group meeting.
I was told that I ‘did not know what I was talking about’ when saying that all autistics might not think a ‘cure’ was desirable, was ‘brainwashed’ and ‘obviously psychotic.’ I wasn’t even being confrontational, they were our invited guests after all.
This was before ‘Autism Every Day’ was released and I had not formed an opinion of the organization. Needless to say, I formed an opinion very quickly. They did not like me or ‘my kind.’ Yes, their words.
It is not hard to extrapolate up the hierarchy and easily imagine their need “to protect their brand.” Even if their lawsuit is not as frivolous as it appears, they know that Zach does not have the resources to even file the necessary counter suits to meet the threat of a suit.
That is how most corporate organizations operate, that is how opposing voices are silenced. Having a message board merely confines any malcontents in a padded room if they are naive to think their concerns are being given an audience. Not that any autistics might be socially naive.
Zazzle has no irons in the fire, they have no will or resources to take on a fair-use — trademark — copyright dispute. They’ll throw anyone controversial out just to keep their boat afloat. They’re in the shirt-selling business, not the fair-use determination business. Not to say, however, that Autism Speaks had nothing to do with the t-shirt dispute just rings empty to me. Corporate spokesman say what they are told to say, pure and simple. I do not believe them.
Though I am curious why you seem to have so many running disputes with Amanda, ABFH and others. It would seem as though this may not be the only issue near and dear to the hearts of we Hub members that you are on the wrong side of. You might want to examine your motivations for your role these dust-ups.
I did read with interest many of your postings on both of your blogspot blogs and we are not in disagreement on a great many things. So why the “We don’t need no stinkin’ neurodiversity” tagline?
Just wondering and trying to get beyond the posturing.
July 24th, 2008 at 1:25 pm
Hello my name is Pam and I am a parent of an 10 year-old child with high functioning autism. I am also frustrated with Autism Speaks. That organization is beginning to be the place where people send their donations if they want to help children and adults with autism. What bothers me is that this group is not upfront about where they spend their money. That is why Cure Autism Now folded into Autism Speaks so that it could “hide itself better.” They take in a lot of money at Autism Speaks and very little of it is spent on services for children and adults with autism. Most of it is spent on medical research. Besides the fact that it is insulting to some people who feel they do not need to be cured, I believe that most people who donate to this organization do not know where most of their money goes. Autism Speaks needs to be more transparent as far as how they spend their money. Someone at their agency told me to look at their annual report when I asked for the breakdown and I hope I am wrong, but it looked to me like they took in 60 million dollars and spent 40 million on Autism Speaks as an organization. I am going to assume I read the report wrong, but do they really want people misinterpreting their “reports.” They should say upfront how much money is spent on what–breaking it down to specific types of research and also how much is spent on intervention research, education, services for children and adults and program costs. Autism Society of America should be running some type of fundraising operation so that people can send their money to that organization and people with autism and parents and other professionals had the real say over where donated money would go. If people wanted to send money for medical research, they should know to send it to Autism Speaks, but not everyone wants to fund medical research.
Pam
August 5th, 2008 at 12:59 pm
If anyone wants to find out what a 13 year old boy with AS thinks about Autism Speaks, they ought to try listening to the very end of this podcast at http://www.mic.mypodcast.com:
“Special Feature Interview with Douglas Giesel and An Update Interview with Lewis Schofield.”
I’m not going to spoil the fun, but when you hear what he says, I guarantee that you will all be literally -and I mean literally- rolling on the floor laughing.
August 17th, 2008 at 4:22 pm
You know what gets me, the “Countdown to Midnight” CD by Elyse Bruce raises money for autism. She is a mom with an boy on the spectrum.
“The Mad Hatter” song off the CD is specifically about autism. It talks about the problems people encounter when trying to get services they need, whether they are for autistics or for themselves…especially in the schools.
And here we have Autism Speaks trying to shut up kids on the spectrum even though this mom is working so hard to advocate for AS kids.
August 19th, 2008 at 1:31 pm
Just stumbled across your blog looking for support groups for parents of aspies, and I wanted to thank you for it. Our five-year-old daughter was diagnosed last year, and we’re still learning more about it every day.