Autism Speaks #MSSNG campaign. Google involved - Thoughts?

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alex
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10 Dec 2014, 11:53 pm

John Robison has this to say: http://wrongplanet.net/whats-mssng-autism/


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11 Dec 2014, 1:03 am

I loved reading that article. It was intelligently written and the overall specialized context of it was very informative.
Thanks, John for your amazing insights ! :D


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11 Dec 2014, 7:36 am

alex wrote:
John Robison has this to say: http://wrongplanet.net/whats-mssng-autism/


I'd be inclined to agree with him on most points.

I don't think tomorrow's children will be the beneficiaries of genetic research. I think the term "tomorrow's children" http://en.wikipedia.org/wiki/Tomorrow's_Children is ironic. I think that they'll be more likely to be its victims.

It's pretty clear, given where they spend their money, that AutismSpeaks doesn't give a damn about us, or about the real, right-now, next-week-next-month-next-year needs of parents raising autistic kids today. Right now it's a narcissistic pity-party, and given human nature, it's pretty clear where it's going.


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11 Dec 2014, 7:52 am

I mean, look-- let's say I get myself checked out for MTHFR mutations, and it comes back that I have both of the most destructive ones.

Not only am I autistic, but I'm probably going to be prone to stroke, and to early heart disease, and I'm probably going to be taken out by sudden cardiac arrest before I'm 60, like my father before me and his father before him. I don't want to know-- I'd rather let the mystery be. I don't want to look at my life and see wasted carbon and oxygen, or sit around waiting for the bomb to go off. I don't want to look at my kids and see little time bombs with no reason to exist.

My dad's 58 years were pretty good. Was his life worth living??

My years have been tainted by seeing myself as broken, but I still want them. Are they worth living??

How about my kids?? If they carry it, are their lives worth living??

Should I even be asking these questions??


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11 Dec 2014, 12:59 pm

I much prefer the #NotMssng campaign. Eugenics should have no place now or in the future, and that's definitely were this seems to be heading. Many of the problems faced by people with Autism are not directly because of Autism, but because of the lack of empathy and support, as well as a social structure designed primarily for neurotypicals. "Developmental disorder"? Only if your definition of "development" is "more like a neurotypical". Neurodiversity is a human strength, not a human weakness.


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11 Dec 2014, 8:30 pm

There's a #mssng and #notmssng Twitter bomb tomorrow. Self-advocates are already so successful in high-jacking the taking over the hashtag that Harold L Doherty (Facing Autism in New Brunswick) is having a huge Twitter tantrum over it, saying how everyone who disagrees is high functioning (not true) and even that they're not really autistic. He's so much smarter than the doctors who actually made the diagnoses apparently.

I think he's trying to debunk the stereotype of Canadians being polite.



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11 Dec 2014, 9:18 pm

Damn we really need some kind of radical movement soon. I'm thinking music. Hopefully we'll get an autistic version of "The Predator", "2Pacalypse Now" or "Fear of a Black Planet".

I can only imagine what's next. Again, more reason to be paranoid.

Seriously, when are these NTs going to understand that autism is not a disease, but a condition? When are these NTs going to realize that I'm a human being, with needs that don't conform to there's?



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12 Dec 2014, 4:20 pm

Hansgrohe wrote:
Damn we really need some kind of radical movement soon. I'm thinking music. Hopefully we'll get an autistic version of "The Predator", "2Pacalypse Now" or "Fear of a Black Planet".

I can only imagine what's next. Again, more reason to be paranoid.

Seriously, when are these NTs going to understand that autism is not a disease, but a condition? When are these NTs going to realize that I'm a human being, with needs that don't conform to there's?


Probably not the next generation. There are many that when, you explain it over and over, they can't understand and cling to their hateful bigotry. Just have to wait for them to die out unfortunately.



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12 Dec 2014, 4:48 pm

Now, how the hell, can they consider the ethical and moral implications of genetic research when they don't even consider us as human beings?

There is no part of me that is "missing", I'm a complete person that's very proud of who I am. How is it they can't see how sickening and monstrous it is, to view someone as half a person?

That money could be better spent, building a school for AS people for example. Not on a doomsday eugenic elimination project that sounds like it could be straight out of James Bond villain playbook.

Even if the research itself is beneficial, bottom line is this:
When they can't even consider us human beings, but rather diseases or defects, that demonstrates that they lack the ethical and moral standard required to have such genetic information.



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12 Dec 2014, 8:52 pm

When I first saw a newspaper article about this research project it gave me a sick feeling - reading more about the people behind it and their attitude to ASD people even more so.

I am glad to see so many speaking out for more positive support and acceptance with the #NotMssing tag - I just posted my own message to support.



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12 Dec 2014, 8:57 pm

I tallied up the top #mssng tweets earlier this afternoon. 24 were anti-Autism $peaks, 14 were pro-Autism Speaks, 3 were foreign language, 3 were unrelated. :wtg:



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12 Dec 2014, 9:47 pm

PlainsAspie wrote:
I tallied up the top #mssng tweets earlier this afternoon. 24 were anti-Autism $peaks, 14 were pro-Autism Speaks, 3 were foreign language, 3 were unrelated. :wtg:

My tweets aren't showing up on the #NotMssng hashtag search results.

Edit: Found out why.
Quote:
2) New or Low Activity Account:
You might not yet have tweeted much, thus not looking like a legitimate account or your account might be brand-new.
Locked out of my old email, had to make a new account, what a bunch of BS.



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13 Dec 2014, 12:03 pm

I don't know what to make of it other than every 5 seconds olliebean and Amy Sequenza retweet something with a #notmssng hashtag


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13 Dec 2014, 12:15 pm

vermontsavant wrote:
I don't know what to make of it other than every 5 seconds olliebean and Amy Sequenza retweet something with a #notmssng hashtag

I'm not well versed in twitter, but I think it means that a lot of people are bothered by #MSSNG. #NTMSSNG is seeking to empower autistic people, by literally saying that we are not missing. I can't imagine what led google/AS to choose this hashtag. It's quite offensive, I think.



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13 Dec 2014, 4:01 pm

androbot01 wrote:
vermontsavant wrote:
I don't know what to make of it other than every 5 seconds olliebean and Amy Sequenza retweet something with a #notmssng hashtag

I'm not well versed in twitter, but I think it means that a lot of people are bothered by #MSSNG. #NTMSSNG is seeking to empower autistic people, by literally saying that we are not missing. I can't imagine what led google/AS to choose this hashtag. It's quite offensive, I think.
im beginning to understand that,untill this post I had no idea what the #notmssng hashtag meant other than like most twitter posts it was against autism speaks.


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13 Dec 2014, 7:47 pm

alex wrote:
Google has teamed up with Autism Speaks to try to find out what genes are responsible for autism.

Here's a link to the official page: http://www.mss.ng/

Business Insider published a piece referencing AS as "controversial": http://www.businessinsider.com/google-l ... ks-2014-12

Quote:
So far, scientists have sequenced more than 1,000 genomes (the complete set of genes in a cell) and are working on 2,000 more.

Autism Speaks speaks says that 1 out of 68 people in the U.S. are affected with autism spectrum disorders, with boys more frequently diagnosed, 1 out of 42.

Not everyone "on the spectrum" suffers from some of the developmental problems associated with autism, nor views autism as something that needs to be "cured."

And because of that, Autism Speaks and this project in particular is controversial in the autistic community. A blogger on the Autism Women's Network went so far as to call Autism Speaks a "hate group."

Autism Speaks said this project is for people who do want more information and more treatment options.


http://www.businessinsider.com/google-l ... ks-2014-12


Wonderful. Denying that AS is on the spectrum in order to try and shut our voices out, plus attempting to say that all autistic people who have a negative opinion on it must be high functioning. The ignorance, it burns. If Autism Speaks spent more money on supporting people and families living with autism and less on research and other stuff that does nothing for them then I guess I would have less of a problem with it.