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"'Autism Speaks' - but Should We Listen?"

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conundrum
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14 Jun 2014, 11:57 pm

http://news.yahoo.com/autism-speaks-lis ... itics.html


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15 Jun 2014, 6:57 am

[Moved from News and Current Events to Autism Politics, Activism, and Media Representation]


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vermontsavant
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15 Jun 2014, 7:13 am

autism maybe the snake oil or leatrile of the 21st century but however i have in recent articles read,have seen improvements.they have made many mistakes in the past but i believe they are improving.

also what is the ASAN doing that is so great


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KingdomOfRats
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15 Jun 2014, 8:04 am

interesting article,good to see ari and ASAN getting a shout out on it.

am just fed up at the number of parents who paint those of us on the severe or profound spectrum-with intelectual disability as being in need of a cure and HFAs considered cured-

Quote:
Singer criticizes the research focus of Autism Speaks, but also disagrees with Ne?eman. ?I think when Ari [Ne?eman] talks about autism and I talk about autism, we?re talking about people with different clusters of autism. I know he doesn?t like the word ?cure.? If my daughter could function the way Ari could, I would consider her cured,? says Singer. ?I have to believe my daughter doesn?t want to be spending time peeling skin off her arm.?

its an insult to us,and an insult to HFAs, as its denying the autism on one side and making a tragedy out of another.

people shoud come to us before they speak for us,many of us with LFA are able to speak in alternative communication such as this forum/text but unable to speak the same capacity verbaly,if only parents had more experience of autism outside of childhood and outside of their own childs experience.
am fed up at being portrayed as a tragedy,am completely the opposite and love life but that is because have got significant specialist support ,multi disciplinary input from an intelectual disability team and equipment to deal with impairments as they come.


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Last edited by KingdomOfRats on 15 Jun 2014, 8:06 am, edited 1 time in total.

CockneyRebel
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15 Jun 2014, 8:05 am

I'm a supporter of ASAN, because they promote positive awareness of AS and autism and they don't use the scare tactics that Auti$m $peak$ does. ASAN also believes that people on the spectrum should be born into this world and that there shouldn't be genetic testing for ASDs. I don't feel that Spectrumites or any disabled population of humans should be weeded out for that matter. In my mind and in my heart, there is something wrong with aborting babies who have any genetic defects. I also don't believe in the perfect race, either.

ASAN does the opposite of what Auti$m $peak$ does, and that's why I support them. Autism Speaks will never speak for me.


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KingdomOfRats
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15 Jun 2014, 8:12 am

CockneyRebel wrote:
I'm a supporter of ASAN, because they promote positive awareness of AS and autism and they don't use the scare tactics that Auti$m $peak$ does. ASAN also believes that people on the spectrum should be born into this world and that there shouldn't be genetic testing for ASDs. I don't feel that Spectrumites or any disabled population of humans should be weeded out for that matter. In my mind and in my heart, there is something wrong with aborting babies who have any genetic defects. I also don't believe in the perfect race, either.

totaly agreed cockneyrebel!


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ASAN does the opposite of what Auti$m $peak$ does, and that's why I support them. Autism Speaks will never speak for me.

and thats exactly why AS hates ASAN and everything it stands for,ASAN give us a voice and a better portrayal in society whereas AS want to portray us as either tragedies [or the opposite for HFA -non existant].
we are the ones living our lives-its not up to them to force their own perception of our lives on us.


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>severely autistic.
>>the residential autist; http://theresidentialautist.blogspot.co.uk
blogging from the view of an ex institutionalised autism/ID activist now in community care.
>>>help to keep bullying off our community,report it!


vermontsavant
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15 Jun 2014, 11:30 am

CockneyRebel wrote:
Autism Speaks will never speak for me.


classic :D


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vermontsavant
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15 Jun 2014, 11:32 am

KingdomOfRats wrote:
interesting article,good to see ari and ASAN getting a shout out on it.

am just fed up at the number of parents who paint those of us on the severe or profound spectrum-with intelectual disability as being in need of a cure and HFAs considered cured-
Quote:
Singer criticizes the research focus of Autism Speaks, but also disagrees with Ne?eman. ?I think when Ari [Ne?eman] talks about autism and I talk about autism, we?re talking about people with different clusters of autism. I know he doesn?t like the word ?cure.? If my daughter could function the way Ari could, I would consider her cured,? says Singer. ?I have to believe my daughter doesn?t want to be spending time peeling skin off her arm.?

its an insult to us,and an insult to HFAs, as its denying the autism on one side and making a tragedy out of another.

people shoud come to us before they speak for us,many of us with LFA are able to speak in alternative communication such as this forum/text but unable to speak the same capacity verbaly,if only parents had more experience of autism outside of childhood and outside of their own childs experience.
am fed up at being portrayed as a tragedy,am completely the opposite and love life but that is because have got significant specialist support ,multi disciplinary input from an intelectual disability team and equipment to deal with impairments as they come.



great post.sublime :)


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Ann2011
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15 Jun 2014, 11:45 am

Quote:
There is a great diversity in our community, which means we have a very broad range of needs. Unfortunately, the majority of the research Autism Speaks has funded to date does not meet those needs, and the community services are too small a percentage of total budget to be truly meaningful. We have delivered very little value to autistic people, for the many millions raised.?
- John Elder Robinson


Autism Speaks is an advocacy group for parents with kids on the spectrum - it's main goal is to provide a platform for parents to whine about how we ruined their lives, not to help us.

I volunteered for Autism Ontario which is a similar organization. They looked at me like I was an untouchable ... and then continued discussing how burdened they are by their children. My presence seemed to make them feel awkward and uncomfortable.



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15 Jun 2014, 3:20 pm

KingdomOfRats wrote:
interesting article,good to see ari and ASAN getting a shout out on it.

am just fed up at the number of parents who paint those of us on the severe or profound spectrum-with intelectual disability as being in need of a cure and HFAs considered cured-
Quote:
Singer criticizes the research focus of Autism Speaks, but also disagrees with Ne?eman. ?I think when Ari [Ne?eman] talks about autism and I talk about autism, we?re talking about people with different clusters of autism. I know he doesn?t like the word ?cure.? If my daughter could function the way Ari could, I would consider her cured,? says Singer. ?I have to believe my daughter doesn?t want to be spending time peeling skin off her arm.?

its an insult to us,and an insult to HFAs, as its denying the autism on one side and making a tragedy out of another.

people shoud come to us before they speak for us,many of us with LFA are able to speak in alternative communication such as this forum/text but unable to speak the same capacity verbaly,if only parents had more experience of autism outside of childhood and outside of their own childs experience.
am fed up at being portrayed as a tragedy,am completely the opposite and love life but that is because have got significant specialist support ,multi disciplinary input from an intelectual disability team and equipment to deal with impairments as they come.

^^
THIS


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