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OregonBecky
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17 Jun 2009, 3:07 pm

Maybe they're getting the message a little but now I'm thinking Autism Speaks is a mixed bag of bad and good.

They still seem to want to make money by scaring everyone into thinking a very scary autism monster is hiding under everyone's bed and nobody is safe.

However, when I'm browsing the web looking for groups that are trying to do good science and not peddle the cureby anecdote bad science revivalist cult behaviors I find funding from Autism Speaks.

One problem I see that's not addressed is that a lot of parents seem to band together in the latest cure cult and use their cure obsessions as a way to live in denial that their kids are likely going to grow up autistic and desperately need their parents now to band together for good futures for them. The more good science there is, the less the parents can fall into cureby cults.

On the other hand, again, Autism Speaks tries to scare parents into thinking that all types of autism is a terrible tragedy. So then the parents want to find cures rather than work on changing society's attitudes.

I have a daughter who, if she were "cured" and became a boring chit chat NT who had nothing in common with me, I'd prefer it over her severe autism because I'm not going to live forever.

However, the rest of my family is all the spectrum in all kinds of interesting ways. They're not broken, other than what society does to their confidence. I don't want a cure for us.


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ASPowerations
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17 Jun 2009, 10:08 pm

What about the speculation that Autism Speaks is funding attempts to develop a prenatal test for autism to allow abortion of autistic fetuses?


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OregonBecky
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17 Jun 2009, 11:10 pm

ASPowerations wrote:
What about the speculation that Autism Speaks is funding attempts to develop a prenatal test for autism to allow abortion of autistic fetuses?


I've been reading about that. It's not everyone who feels that way but there are some pretty hateful blogs saying Down Syndrome has been reduced by abortions and autism could be, too. If they started reducing the autistic population, a big part of what gives humanity its creativity and inventiveness would disappear.

Autism Speaks is a mixed bag. We just have to keep pushing back on their hateful side and encouraging better things from them.


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CockneyRebel
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17 Jun 2009, 11:58 pm

I can't stand Autism Speaks. They're the Grim Reaper to us all.


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18 Jun 2009, 1:54 am

I have never read anything by Autism Speaks that they are going to find a gene in fetishes so people can abort them so I think that is all assumptions people make.



JerryHatake
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18 Jun 2009, 7:11 am

I have to agree with Becky here since everyone has mixed opinions about things. Same way with the term cure because it has multiple meanings and mostly uses its first meaning not looking at the whole picture. Being open minded about things is probably the best way to gain understanding instead of always being close minded to new thoughts and perspectives about different subject matters.


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18 Jun 2009, 11:00 am

The reduction in Down Syndrome had no societal ramifications, a reduction in autism does. Despite what the cure people think, MOST folks with autism are the high functioning variety. Several major advancements in technology and science alone have been made by people on the spectrum. One has to present to these people this fact, the severly autistic represents only .5 out of 1000. MOST of the 1 in 150 is of the high functioning type. As a psych said, the way our brains are designed contributes to our intellectual capabilities being advanced. One cannot tell the differnce genetically from the person who sits in a corner and bill gates, tesla or einstien. The question then has to be with a cure does society want to take out the most talented and intellectually driven members of society. Because ultimately that is the effect. The difference between eccentric brilliance and the lfa genetically is a very thin veil.



OregonBecky
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18 Jun 2009, 11:39 am

starygrrl wrote:
The reduction in Down Syndrome had no societal ramifications, a reduction in autism does. Despite what the cure people think, MOST folks with autism are the high functioning variety. Several major advancements in technology and science alone have been made by people on the spectrum. One has to present to these people this fact, the severly autistic represents only .5 out of 1000. MOST of the 1 in 150 is of the high functioning type. As a psych said, the way our brains are designed contributes to our intellectual capabilities being advanced. One cannot tell the differnce genetically from the person who sits in a corner and bill gates, tesla or einstien. The question then has to be with a cure does society want to take out the most talented and intellectually driven members of society. Because ultimately that is the effect. The difference between eccentric brilliance and the lfa genetically is a very thin veil.


Getting rid of autism is impossible even if they did find a gene. I suspect if they had genetic testing for autism, if they found a gene in the fetus, they'd likely find the same gene in one or both of the parents. Then the parents would think, would the world have been a better place if they had been aborted?

In addition, I think autism genes weave in and out of the human race and are too embedded to remove them. I have friends who work at Intel who accept that the place is overrun with aspies. If they went on strike, Intel would be a ghost town.


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pandd
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18 Jun 2009, 10:52 pm

starygrrl wrote:
The reduction in Down Syndrome had no societal ramifications, a reduction in autism does.

That is not true, especially for people with Downs Syndrome who in many cases are very well aware that people like them are devalued to the point of being targeted for abortion. There may be no social ramifications that particularly impact on you personally, but unless we are going to go beyond aborting them before they are born, to the extent that those who are born are deemed not part of society, (not real people), then it’s utterly wrong to say there are no social ramifications to pre-emptively aborting potential Downs Syndromers.



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19 Jun 2009, 12:33 pm

I think the organization itself is bad, but I'm sure that many of the parents involved with it do not truly understand the implications of the aim of the organization and are truly decent people who want nothing but the best for their children, but don't understand that there are better ways of delivering it. You can't blame the ignorant for being in the dark.

That said, Autism Speaks doesn't speak for me or for my family.


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OregonBecky
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19 Jun 2009, 12:43 pm

Autism Speaks is very well funded and passes money out everywhere to lots of organizations, who, in turn, say nice things about them. I don't know how they got so powerful so fast, maybe by scaring everyone.

What is out there to push back? I talked politely to an Autism Speaks researcher, explaining my point of view. I don't know if it put a Chinese in the armor of her heart and mind but I've got the rest of my life to work on changing hearts and minds because my kids are depending on it.


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auntyjack
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20 Jun 2009, 5:46 am

starygrrl wrote:
The reduction in Down Syndrome had no societal ramifications,


The only way that we can consider the reduction of Down Syndrome by abortion is if we value qualities which people with Down Syndrome do not have or exhibit differently as somehow less. What is it? Is a certain intelligence as the primary quality of what it is to be human. What is that level? What about highly intelligent people who are evil? Do they have more right to exist than a person with Down Syndrome? Is it a tongue of a certain length or round eyes which define a person? Is it long fingers or an increased capacity for deceit or deliberate cruelty?

I think that society is a poorer place without people who remind us of the things that are really important.



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20 Jun 2009, 5:52 am

It did have societal ramifications. It gave humanity the idea that it's okay to wage Genocide. That is a big ramification. People now have the idea genocide is okay so long as it's waged on the unborns.



auntyjack
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20 Jun 2009, 6:16 am

Magneto wrote:
People now have the idea genocide is okay so long as it's waged on the unborns.


it is more than that. People now believe it is ok to dispose of unborn children who do not live up to their expectations.



OregonBecky
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03 Jul 2009, 7:24 pm

auntyjack wrote:
Magneto wrote:
People now have the idea genocide is okay so long as it's waged on the unborns.


it is more than that. People now believe it is ok to dispose of unborn children who do not live up to their expectations.


Or keep cycling through prescription drugs trying to make the born children into normal conforming standard models of preconceived notions about what kids should be like.


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auntyjack
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16 Jul 2009, 7:51 am

[quote="

However, when I'm browsing the web looking for groups that are trying to do good science and not peddle the cureby anecdote bad science revivalist cult behaviors I find funding from Autism Speaks.
quote]

Good science would also involve researching issues found to be important by autistics. I am not sure that they try to find out. It would also involve autistics on review panels. There are many qualified to do this. Their management team would include autistic representation at a level greater than tokenism.

Nothing about us without us.