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What is the truth about Autism Speaks??

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Is the charity group Autism Speaks doing more harm than good?
Yes, they are doing more harm than good 83%  83%  [ 67 ]
No, they are a charity doing great work on behalf of autistics everywhere 2%  2%  [ 2 ]
Unsure; Autism Speaks doesn't seem to make that much of a difference 15%  15%  [ 12 ]
Total votes : 81

Pepperfire
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15 Mar 2008, 7:05 pm

You know what I don't understand (naive little bugger that I am), why is it that testing isn't going into find out what causes the gastrointestinal disturbances? Why is it that research isn't going into finding out what causes hand flapping and stimming? Why is it that when there are quite obviously so many specific symptoms that combined create autism, but separately aren't getting the attention that the collective gets?

Oh wait... because someone (the grandparents of an autistic boy) thinks they can cure their grandson.

:?



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15 Mar 2008, 7:17 pm

CockneyRebel wrote:

Those b*****s should get their children taken away, by Social Services.

In the USA, CPS and DSS are both as useless as the hair on my shaft.


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lau
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15 Mar 2008, 7:40 pm

Pepperfire wrote:
You know what I don't understand (naive little bugger that I am), why is it that testing isn't going into find out what causes the gastrointestinal disturbances? Why is it that research isn't going into finding out what causes hand flapping and stimming? Why is it that when there are quite obviously so many specific symptoms that combined create autism, but separately aren't getting the attention that the collective gets?

Oh wait... because someone (the grandparents of an autistic boy) thinks they can cure their grandson.

:?
The problem with genes is that each gene does not necessarily have a single effect. In amongst the collection of genes that contribute to what is recognised as autism, an overlapping set of genes may affect the developing body to result in a "gastrointestinal disturbance". Neither causes the other, even though their may share some genetic differences. Indeed, neither may have any relevance at all in the manifestation of the other - the identical overlapped set of genes could also result in greater resistance to the common cold, or longer fingers, or...
Think of it like looking at a tree... or rather at its leaves, and asking the question "Why does this leaf cause that leaf?". You need to look at the trunk. And even then, if you are in a wood, you may discover that the two leaves you were looking at were actually on separate trees. And... in this analogy, the genes are the ground the trees are growing out of.


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15 Mar 2008, 7:56 pm

lau wrote:
The problem with genes is that each gene does not necessarily have a single effect. In amongst the collection of genes that contribute to what is recognised as autism, an overlapping set of genes may affect the developing body to result in a "gastrointestinal disturbance". Neither causes the other, even though their may share some genetic differences. Indeed, neither may have any relevance at all in the manifestation of the other - the identical overlapped set of genes could also result in greater resistance to the common cold, or longer fingers, or...
Think of it like looking at a tree... or rather at its leaves, and asking the question "Why does this leaf cause that leaf?". You need to look at the trunk. And even then, if you are in a wood, you may discover that the two leaves you were looking at were actually on separate trees. And... in this analogy, the genes are the ground the trees are growing out of.


In other words, a certain symptom may not be attributable to one single gene or even to two genes, but three genes like so, and boom, there's the symptom?

If so, I get it.

All the more reason for us to be concerned about anyone thinking they could find a "cure".



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15 Mar 2008, 8:49 pm

Pepperfire wrote:
... All the more reason for us to be concerned about anyone thinking they could find a "cure".

Oh! Yes, yes, yes! The "cure" for autism might well be possible - even fairly simple.

It would almost certainly result in a slew of "unfortunate minor side-effects", like being born paraplegic, blind, deaf and boring - but just think - at least your child would not be autistic!

PS. I do not intend any slight on paraplegics (I've known a few), blind people (whom I'm astounded by) or deaf people (I don't think I've met any, face to face - but I'm having a go at learning sign language, because it sounds(sic) like a good idea). As far as boring people go - yeah... I don't much care for them. :)

PPS. And, I suppose I'm saying that I have no expectation of any "cure" post-conception. The only "cure" I see is eugenics or gene manipulation.


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16 Mar 2008, 10:47 am

lau wrote:
Pepperfire wrote:
... All the more reason for us to be concerned about anyone thinking they could find a "cure".

Oh! Yes, yes, yes! The "cure" for autism might well be possible - even fairly simple.

It would almost certainly result in a slew of "unfortunate minor side-effects", like being born paraplegic, blind, deaf and boring - but just think - at least your child would not be autistic!

PS. I do not intend any slight on paraplegics (I've known a few), blind people (whom I'm astounded by) or deaf people (I don't think I've met any, face to face - but I'm having a go at learning sign language, because it sounds(sic) like a good idea). As far as boring people go - yeah... I don't much care for them. :)

PPS. And, I suppose I'm saying that I have no expectation of any "cure" post-conception. The only "cure" I see is eugenics or gene manipulation.


I agree. And unfortunately, based on your post... You and I both have the same problem with eugenics and gene manipulation. I do understand it better now... Thank you.

Which begs my next naive little question... Why are we, the auties and aspies of the world who are capable of voicing our thoughts and opinions, being so devastatingly ignored?

This is a really scary situation.

Is nobody carrying out ball? Is there no-one out there getting any publicity behind whom I can throw my support to make this stop, (except Midnight in Chicago, that is)? Tell me that I'm not going to have to be the one to actually shake the tree... I haven't the time for it (yet). IOW... Aside from Alex, who is trying to get this message out there?



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16 Mar 2008, 5:21 pm

Pepperfire wrote:
lau wrote:
Pepperfire wrote:
... All the more reason for us to be concerned about anyone thinking they could find a "cure".

Oh! Yes, yes, yes! The "cure" for autism might well be possible - even fairly simple.

It would almost certainly result in a slew of "unfortunate minor side-effects", like being born paraplegic, blind, deaf and boring - but just think - at least your child would not be autistic!

PS. I do not intend any slight on paraplegics (I've known a few), blind people (whom I'm astounded by) or deaf people (I don't think I've met any, face to face - but I'm having a go at learning sign language, because it sounds(sic) like a good idea). As far as boring people go - yeah... I don't much care for them. :)

PPS. And, I suppose I'm saying that I have no expectation of any "cure" post-conception. The only "cure" I see is eugenics or gene manipulation.


I agree. And unfortunately, based on your post... You and I both have the same problem with eugenics and gene manipulation. I do understand it better now... Thank you.

Which begs my next naive little question... Why are we, the auties and aspies of the world who are capable of voicing our thoughts and opinions, being so devastatingly ignored?

This is a really scary situation.

Is nobody carrying out ball? Is there no-one out there getting any publicity behind whom I can throw my support to make this stop, (except Midnight in Chicago, that is)? Tell me that I'm not going to have to be the one to actually shake the tree... I haven't the time for it (yet). IOW... Aside from Alex, who is trying to get this message out there?


Well, there's Ari Ne'eman and the ASAN

I think it's because sometimes people don't like to admit that there are others that are out there that are different and I think the media scares them to the thought of someone that is.



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16 Mar 2008, 5:55 pm

Aspergians love to pick on Autism Organizations. Let's hear about all the wonderful Aspergers Organizations out there and all the things they're doing for you. That seems to be the piece of the puzzle I'm always missing. So much time wasted and anger directed at one organization in particular when no time is spent singing the praises of the ones that are doing great things for Aspergers.

I can tell you one thing...we came from the very low-end of the spectrum and I am grateful for all the support and intervention our family has gotten. We actually called Autism Speaks when we got our diagnosis and they provided us with so much support. Many of the organizations that helped us are pro-treatment and pro-cure. Thanks to it, my son will not have the hardships, struggles and sadness that many on WP face. And, many times when I read threads here I say to myself, "Wow! If only they had gotten X, Y, Z maybe things would be different for them."

No life is perfect, but everyone deserves to live the best life possible. We only have one shot at it. It's not a trial run. And, I fear that many AS people here on WP aren't doing that. But, anger towards Autism organizations will get you nowhere. Autism Speaks isn't going away. If anything, it's gaining more recognition and becoming stronger. Everyone knows about Autism Speaks now. You see their bumper tags everywhere. Commercials everywhere. Events everywhere. They're here to stay. And, so are all the other organizations that are becoming stronger and stronger as more families reach out to them and get the support they need.

I've said this many times on WP, Aspergians need to get behind and rally for an organization in the U.S. that doesn't offend them or insult what they stand for. And leave the Autism organizations to people who need and want what they have to give. There should be room in the Autism universe for all to survive. And, survive in a way where nobody's stepping on each other's toes. I, for one, would like to see more recognition and undersatnding of Aspergers.



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16 Mar 2008, 7:26 pm

NewportBeachDude wrote:
Aspergians love to pick on Autism Organizations. Let's hear about all the wonderful Aspergers Organizations out there and all the things they're doing for you. That seems to be the piece of the puzzle I'm always missing. So much time wasted and anger directed at one organization in particular when no time is spent singing the praises of the ones that are doing great things for Aspergers.

I can tell you one thing...we came from the very low-end of the spectrum and I am grateful for all the support and intervention our family has gotten. We actually called Autism Speaks when we got our diagnosis and they provided us with so much support. Many of the organizations that helped us are pro-treatment and pro-cure. Thanks to it, my son will not have the hardships, struggles and sadness that many on WP face. And, many times when I read threads here I say to myself, "Wow! If only they had gotten X, Y, Z maybe things would be different for them."

No life is perfect, but everyone deserves to live the best life possible. We only have one shot at it. It's not a trial run. And, I fear that many AS people here on WP aren't doing that. But, anger towards Autism organizations will get you nowhere. Autism Speaks isn't going away. If anything, it's gaining more recognition and becoming stronger. Everyone knows about Autism Speaks now. You see their bumper tags everywhere. Commercials everywhere. Events everywhere. They're here to stay. And, so are all the other organizations that are becoming stronger and stronger as more families reach out to them and get the support they need.

I've said this many times on WP, Aspergians need to get behind and rally for an organization in the U.S. that doesn't offend them or insult what they stand for. And leave the Autism organizations to people who need and want what they have to give. There should be room in the Autism universe for all to survive. And, survive in a way where nobody's stepping on each other's toes. I, for one, would like to see more recognition and undersatnding of Aspergers.


I'd like to see an organisation that supports people with autism rather than the people who are intolerant of it, an organisation that treats autistics and aspies as people rather than "cases".

My college has staff and an area to help students with Aspergers and Autism. Our Member of Parliament Charles Clarke and our college Principle gave this area of the college more resources; not because it helps intolerant parents get over something terrible, but so that us students with Aspergers and Autism have a place for support if we decide to use it to help us study and study well and successfully in the courses we chose to take. When this area was being designed, we talked to the interior designers. When Charles Clarke opened this area, he talked to us, not our parents.

It's all about respect; something that Autism Speaks doesn't seem to have a lot of.



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16 Mar 2008, 7:32 pm

You mean you expect respect from a group led by someone willing to murder her own child?



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16 Mar 2008, 7:37 pm

morning_after wrote:
You mean you expect respect from a group led by someone willing to murder her own child?


No, I don't expect anything in the form of respect from them at all. Which is why some Aspies just might have a little anger towards certain Autism organizations.



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16 Mar 2008, 7:48 pm

Let's hope that Hillary doesn't win the election.


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16 Mar 2008, 7:50 pm

^ Is there somethign I missed? Does Hillary have somesort fo connection with Autism Speaks?



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16 Mar 2008, 7:50 pm

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Let's hope that Hillary doesn't win the election.


What's Hillary got to do with anything?



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16 Mar 2008, 9:34 pm

morning_after wrote:
CockneyRebel wrote:
Let's hope that Hillary doesn't win the election.


What's Hillary got to do with anything?


Yeah, what's Hillary Clinton have to do with this thread?? As the starter of the thread, I certainly didn't bring her into this.

By the way, thanks to all of you out there for clearing the air. The more communication about what's happening now and what's going on in the future, the better. 8)


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16 Mar 2008, 9:50 pm

JohnnyCarcinogen wrote:
morning_after wrote:
CockneyRebel wrote:
Let's hope that Hillary doesn't win the election.


What's Hillary got to do with anything?


Yeah, what's Hillary Clinton have to do with this thread?? As the starter of the thread, I certainly didn't bring her into this.

She's in bed with Bob and Suzanne Wright ;)


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