My theory on why AutSpeaks shows only LFA
OliveOilMom
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I could be wrong, but this is my theory. If you look at fund raising ads on TV for things like the Feed the Children places or Human Society places, they only show the absolute worst case scenarios. They show naked kids with bloated bellies and fly crusted eyes. They show beaten and burned dogs and cats. They don't show kids in families who go to bed hungry a few nights a week but are otherwise mostly healthy. They don't show dogs and cats who are fine but were picked up as strays. They go for the heart wrenching images. The things that make the average person want to do something, anything, to help the situation.
If they showed average people, who function in day to day life but who have AS and mild to moderate difficulties, I bet they couldn't get money out of the average TV viewer with a crowbar. I think it's all marketing.
I'm not defending them for focusing only on LFA, I'm just speculating on why they do.
Thoughts?
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You pretty much sum it up. Money ,marketing, and to make us ALL look like we are screwed without assistance. I also heard that there are only Neurotypicals on their board.
This is why I boycott Autism Speaks 400 (hell I don't even watch NASCAR no more, so I tune out of every race since '09)
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OliveOilMom
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I wonder if there are any undiagnosed aspies or dx'd aspies who keep that info to themselves on the board.
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I'm giving it another shot. We will see.
My forum is still there and everyone is welcome to come join as well. There is a private women only subforum there if anyone is interested. Also, there is no CAPTCHA.
The link to the forum is http://www.rightplanet.proboards.com
MusicIsLife2Me
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Well I think its partially due to the fact that most people can't believe something unless its very obvious.
Many people need it to be be right out in front of them for something to be real. They can't think deeper. Which is sad because there are so many things that aren't obvious to the naked eye, but still need our attention and support.
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They're a relatively new organization. They were founded amidst the family drama of an autistic grandchild, and it's pretty obvious that the founders envisioned it being kind of like the March of Dimes. They believed that autism was something that struck "normal" toddlers or fetuses out of the blue because something went wrong during pregnancy or infancy, or they were being exposed to some toxin. They raised lots of money, launched into their own research, and (unsurprisingly) figured out within 2-3 years that autism isn't caused by vaccines, drug reactions, or bad things happening during pregnancy. That created a new problem -- they still had cash pouring in, but their original goal (figure out what causes autism, and prevent it from happening a-la-Folic-Acid-for-March-of-Dimes) was suddenly shown to be based on a false premise. So, they pulled the next reasonable-sounding premise out of the public relations hat -- genetic testing -- with probably 2-3 days' of discussion.
Remember, up to that point, they were focused ENTIRELY upon the needs of PARENTS with autistic kids, so to that audience, "we can't save YOUR kids, but we can help others avoid having autistic kids" was a reasonable message. They quickly figured out that their new message wasn't going to make them any friends, and reinvented themselves again to focus on their current mission -- helping autistic kids (and indirectly, autistic adults) by sponsoring research to find long-term treatments for autism's worst symptoms.
It sounds deliciously scandalous to rant about, but at the end of the day, I seriously doubt whether anybody involved with Autism Speaks ever sat down at any kind of meeting and said, "You know, I think we should make eugenics our official mission". It was a small organization with incredible fundraising abilities that grew faster than its ability to spend the cash on useful research, and had to reinvent itself almost as quickly as it started. They stumbled a bit along the way, but if you look at what they do right now, they appear to have done exactly that -- reinvented themselves into an organization whose goal is finding long-term solutions to the real problems faced by autistic adults, kids, and their parents (who might themselves be autistic).
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Your Aspie score: 170 of 200 · Your neurotypical (non-autistic) score: 34 of 200 · You are very likely an Aspie [ AQ=41, EQ=11, SQ=45, SQ-R=77; FQ=38 ]
People are always going to make things look the worst just so they can get support. If everyone was seeing high functioning autistic adults, people may not take it as seriously. People look at us and we seem normal so it's hard for them to believe we have a real condition. But unfortunately what they are doing will just keep enabling ignorance.
They're a relatively new organization. They were founded amidst the family drama of an autistic grandchild, and it's pretty obvious that the founders envisioned it being kind of like the March of Dimes. They believed that autism was something that struck "normal" toddlers or fetuses out of the blue because something went wrong during pregnancy or infancy, or they were being exposed to some toxin. They raised lots of money, launched into their own research, and (unsurprisingly) figured out within 2-3 years that autism isn't caused by vaccines, drug reactions, or bad things happening during pregnancy. That created a new problem -- they still had cash pouring in, but their original goal (figure out what causes autism, and prevent it from happening a-la-Folic-Acid-for-March-of-Dimes) was suddenly shown to be based on a false premise. So, they pulled the next reasonable-sounding premise out of the public relations hat -- genetic testing -- with probably 2-3 days' of discussion.
Remember, up to that point, they were focused ENTIRELY upon the needs of PARENTS with autistic kids, so to that audience, "we can't save YOUR kids, but we can help others avoid having autistic kids" was a reasonable message. They quickly figured out that their new message wasn't going to make them any friends, and reinvented themselves again to focus on their current mission -- helping autistic kids (and indirectly, autistic adults) by sponsoring research to find long-term treatments for autism's worst symptoms.
It sounds deliciously scandalous to rant about, but at the end of the day, I seriously doubt whether anybody involved with Autism Speaks ever sat down at any kind of meeting and said, "You know, I think we should make eugenics our official mission". It was a small organization with incredible fundraising abilities that grew faster than its ability to spend the cash on useful research, and had to reinvent itself almost as quickly as it started. They stumbled a bit along the way, but if you look at what they do right now, they appear to have done exactly that -- reinvented themselves into an organization whose goal is finding long-term solutions to the real problems faced by autistic adults, kids, and their parents (who might themselves be autistic).
Ok, I can see that. Still, I want them to take a stance on the preservation of our neurotype and guarantee they will fight for our continued existence before I would trust them. Start with a law banning the destruction of a life based on Autism so their research won't help other organizations kill us.
Alternatively, they could show the fetus/embryo of someone with HFA/AS being destroyed and follow it with the achievements and happiness of an HFA/AS individual, perhaps a woman. I hear Kelly Clarkson dreams in color... maybe her?
jojobean
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I would like to see at least half of the money raised by Autism Speaks going directly to help folks, not just "research", until then, they are just a non-profit black hole....money goes in, nothing escapes not even reason itself.
Jojo
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Give a hungry man a free meal, and he won't be hungry tonight.
Teach him to fish instead, and he won't be hungry again because he'll be able to help himself in the future.
Autism Speaks isn't a shoestring operation run out of somebody's garage. From Day One, it was started by individuals who ran some of America's largest corporations, and it was capitalized by a fundraising strategy taken straight from the example set by other large, corporate-like nonprofit organizations like the Red Cross, Humane Society, etc. Corporate donors view donations the same way they view investments -- they expect to see a "return". That's not saying they expect to personally benefit from their donation, but rather, they expect to see each dollar they "invest" (via donation) multiplied and produce the results of several dollars.
There's nothing America's "1%" loves more than helping people to help themselves. It's a message that resonates well with them, and can successfully raise lots of cash as long as Autism Speaks can show meaningful results.
In the long run, the greatest "bang per buck" in autism research is going to come from better meds. Specifically, rediscovering orphaned pharmaceutical compounds that were found, patented, and ultimately abandoned before getting approved by the FDA for anything because they weren't good for their original intended purpose, and nobody even thought to see whether they did something useful for the symptoms of autism.
I believe that right now, Autism Speaks is underwriting studies on a prodrug ("Arbaclofen") that metabolizes to the right-hand isomer of baclofen that seems to help with baseline aspie anxiety better than current drugs. I wouldn't be surprised to see them looking at proposals for studies related to Oxytocin. I'd personally be delighted to see them financing studies for drugs like tianeptine (link -- approved in Europe, and used by quite a few European aspies off-label for inattentiveness and executive dysfunction, but unlikely to ever be approved by the FDA unless someone like Autism Speaks takes up the cause since its patent expired years ago & no pharma mfr is going to spend its own money getting a drug approved that could be legally generic from day one).
IMHO, Tianeptine is a particularly good drug to start with, because it's already unambiguously legal (though off-label for autism) in Europe and elsewhere, so the initial studies (to convince Autism Speaks' own board that it's a useful drug to finance official FDA studies for) can be done cheaply and semi-informally (not to convince the FDA, of course, but rather to convince Autism Speaks itself that it does good things for Autism. Hell, Americans can even buy it pretty easily without a prescription online, so "we" (WrongPlanet users) could even come up with a guerrilla efficacy test plan ourselves to run, document, and present to them to make the case for taking it up as an official clinical trial seeking FDA approval. Not that I'd ever suggest something of such blurry legality as a guerrilla "open-source" med trial, of course...
I'll be the first to admit that I originally bought into the "Autism Speaks is Evil" attitude that's vogue among lots of users here, but my opinion of them changed enormously after I found out that they're now underwriting drug research to find better treatments. I get frustrated by my executive dysfunction on a more or less daily basis, and would totally kill for a drug that does for executive dysfunction what Adderall/Dexedrine/Concerta does for lack of focus. I could possibly even be persuaded to spend money on a drug that improves my sociability, as long as it didn't mess up something I view as more important (like cognition or ability to have sex (no problems in that particular department, and sociability without sex would be kind of pointless)).
_________________
Your Aspie score: 170 of 200 · Your neurotypical (non-autistic) score: 34 of 200 · You are very likely an Aspie [ AQ=41, EQ=11, SQ=45, SQ-R=77; FQ=38 ]
I know one thing: They're not using any of it to make my life better.
That seems to be the general consensus.
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