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What do you think of Autism Speaks?

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Shahunshah
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30 Sep 2016, 8:52 pm

B19 wrote:
Quote:
Autism Speaks is not saying that you are imperfect or need a cure, what are you afraid of? [End Quote]

Have you ever seen the video "I Am Autism" that AS supported until the heat got too hot for them?
........

Autism Speaks amalgamated with Cure Autism Now in 2006 and made a declaration to the effect that union was because they had the same central goal. Given videos Autism Speaks have released in the past, which demonised anyone with autism to absurd levels, given that they have compared autism to leprosy, and so on, I think APOM's view is justified.

Well in my previous posts I have mentioned that Autism Speaks in the present has come to the understanding that the idea of a cure for someone with High Functioning Autism or Asperger's may not be in their interests. I certainly think that Autism Speaks through all its past rhetoric has alienated people on the spectrum. But I also think that we as people with High Functioning Autism and Asperger's need to comprehend how difficult life is on the other end of the spectrum. And ultimately understand why Autism Speaks is doing the actions its doing rather than handing relentless criticism.

You think a mere comparison to leprosy is bad well you can say that once you have lived a life where you can't speak, live independently and suffer crippling sensory issues.



Last edited by Shahunshah on 30 Sep 2016, 9:07 pm, edited 2 times in total.

B19
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30 Sep 2016, 8:54 pm

Time for some positivity:

https://www.youtube.com/watch?v=SXYN5kZrgyo



Shahunshah
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30 Sep 2016, 8:59 pm

B19 wrote:
Time for some positivity:

https://www.youtube.com/watch?v=SXYN5kZrgyo
I am not saying that Autism Speaks has not misrepresented people on the spectrum in the past as it has clearly done in that 2009 article the thing is much has changed since then. Frankly it would helpful if we realized that Autism Speaks main priority is to help those with Low Functioning Autism and leave it at that. The idea of a solving Autism is not just an attack on your identity it is an organization trying to make people's lives better.



Shahunshah
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30 Sep 2016, 9:06 pm

Midnightstar16 wrote:
Hm, I've never heard of them. Should I be hating them with a passion? :huh:
Your call many people on the forum do but I certainly don't.



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30 Sep 2016, 9:24 pm

Kay, their trying to cure autisim? I know a little girl, instead of having just aspergers, she had full on autisim, bad enough to where she's in a wheelchair most of the time and acts like shes prepetually happy for some reason. I'd love to see her cured, and so would her mom. But me? Nah, I'll pass, I think I'd lose a big chunk of myself if I was cured.


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B19
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30 Sep 2016, 9:43 pm

According to AS, being autistic means you don't learn how to use a toilet:
https://www.autismspeaks.org/news/news- ... all-action

How false and misleading is that? How insulting is that? It is naive to think that AS didn't know any better in 2013 when they spread this and other ridiculous claims.

Excerpt:

Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help. This is a national emergency. We need a national autism plan – NOW.

No respect for difference there, no acknowledgement that the vast majority of the 3 million autistic people in the USA can do all these things, no mention of autistic achievement and achievers (like our own Alex Plank). None, because Autism Speaks wants to frame the autism story as a horror story, to depict it in ways which are calculated to cause fear and disgust in potential donors and the public mind. I don't understand how any of their apologists can say that they respect people on the spectrum, I don't know how the apologists reconcile their beliefs with the garbage that Autism Speaks uses to portray autism. Autism Speaks never speaks of autism's achievers because it would expose the bias in everything they stand for, say and promote.



Shahunshah
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30 Sep 2016, 10:03 pm

B19 wrote:
According to AS, being autistic means you don't learn how to use a toilet:
https://www.autismspeaks.org/news/news- ... all-action

How false and misleading is that? How insulting is that? It is naive to think that AS didn't know any better in 2013 when they spread this and other ridiculous claims.

Excerpt:

Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help. This is a national emergency. We need a national autism plan – NOW.

No respect for difference there, no acknowledgement that the vast majority of the 3 million autistic people in the USA can do all these things, no mention of autistic achievement and achievers (like our own Alex Plank). None, because Autism Speaks wants to frame the autism story as a horror story, to depict it in ways which are calculated to cause fear and disgust in potential donors and the public mind. I don't understand how any of their apologists can say that they respect people on the spectrum, I don't know how the apologists reconcile their beliefs with the garbage that Autism Speaks uses to portray autism. Autism Speaks never speaks of autism's achievers because it would expose the bias in everything they stand for, say and promote.


Well to be fair to Autism Speaks many people on the spectrum can't live independently or use a toilet it is part of living with Low Functioning Autism. It is not as you suggested a gross and misleading statistic.

As for all the achievers you mentioned the thing that they have in common is that they are High Functioning or bear Asperger's Syndrome. The thing is that is very different from the life that you would have to live if you are nonverbal, can't live independently and likely have epilepsy. It is just a different world and what Autism Speaks by proposing a cure is doing is advocating for those people. The fact is simply that if you have Asperger's syndrome chances are you don't know what it is like to have Low Functioning Autism.

And as for not talking about Autism Heroes. Well I have seen much praise delivered on to Temple Grandin by Autism Speaks for the way she has helped expand our horizon of the condition.



Shahunshah
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30 Sep 2016, 10:17 pm

Midnightstar16 wrote:
Kay, their trying to cure autisim? I know a little girl, instead of having just aspergers, she had full on autisim, bad enough to where she's in a wheelchair most of the time and acts like shes prepetually happy for some reason. I'd love to see her cured, and so would her mom. But me? Nah, I'll pass, I think I'd lose a big chunk of myself if I was cured.
That's kind of the way I see it I just feel that their is such a different world between having severe autism and being Asperger's. I guess that one of the reasons why Autism Speaks has got so much crap thrown at it is that in the past it didn't realize this and said that if you had Asperger's you were doomed to live a life of isolation.



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30 Sep 2016, 11:23 pm

Shahunshah wrote:
B19 wrote:
According to AS, being autistic means you don't learn how to use a toilet:
https://www.autismspeaks.org/news/news- ... all-action

How false and misleading is that? How insulting is that? It is naive to think that AS didn't know any better in 2013 when they spread this and other ridiculous claims.

Excerpt:

Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help. This is a national emergency. We need a national autism plan – NOW.

No respect for difference there, no acknowledgement that the vast majority of the 3 million autistic people in the USA can do all these things, no mention of autistic achievement and achievers (like our own Alex Plank). None, because Autism Speaks wants to frame the autism story as a horror story, to depict it in ways which are calculated to cause fear and disgust in potential donors and the public mind. I don't understand how any of their apologists can say that they respect people on the spectrum, I don't know how the apologists reconcile their beliefs with the garbage that Autism Speaks uses to portray autism. Autism Speaks never speaks of autism's achievers because it would expose the bias in everything they stand for, say and promote.


Well to be fair to Autism Speaks many people on the spectrum can't live independently or use a toilet it is part of living with Low Functioning Autism. It is not as you suggested a gross and misleading statistic.

As for all the achievers you mentioned the thing that they have in common is that they are High Functioning or bear Asperger's Syndrome. The thing is that is very different from the life that you would have to live if you are nonverbal, can't live independently and likely have epilepsy. It is just a different world and what Autism Speaks by proposing a cure is doing is advocating for those people. The fact is simply that if you have Asperger's syndrome chances are you don't know what it is like to have Low Functioning Autism.

And as for not talking about Autism Heroes. Well I have seen much praise delivered on to Temple Grandin by Autism Speaks for the way she has helped expand our horizon of the condition.


I suspect that if I or anyone else represented the most able part of the spectrum as representing the whole spectrum, the curebies would find that offensive. Yet the same curebies tolerate the least able part of the spectrum being used to represent the whole, and deem this honest.

Also I wonder if you are familiar with the distribution of characteristics called the normal curve (also called the bell curve). It represents how in any population, those characteristics vary. Have a look at one; you will see that each tail represents a percentage, the very highest and the very lowest. Most people fall in the other segments, and most of those in the middle (or highest part) of the bell curve. That's why you can't use one tail of the bell curve to make claims about the whole. Organisations that do that tend to have a vested interest in doing so.

These threads are legion on WP, and there is nothing new to be said, so I am out.



Shahunshah
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30 Sep 2016, 11:45 pm

B19 wrote:
Shahunshah wrote:
B19 wrote:
According to AS, being autistic means you don't learn how to use a toilet:
https://www.autismspeaks.org/news/news- ... all-action

How false and misleading is that? How insulting is that? It is naive to think that AS didn't know any better in 2013 when they spread this and other ridiculous claims.

Excerpt:

Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help. This is a national emergency. We need a national autism plan – NOW.

No respect for difference there, no acknowledgement that the vast majority of the 3 million autistic people in the USA can do all these things, no mention of autistic achievement and achievers (like our own Alex Plank). None, because Autism Speaks wants to frame the autism story as a horror story, to depict it in ways which are calculated to cause fear and disgust in potential donors and the public mind. I don't understand how any of their apologists can say that they respect people on the spectrum, I don't know how the apologists reconcile their beliefs with the garbage that Autism Speaks uses to portray autism. Autism Speaks never speaks of autism's achievers because it would expose the bias in everything they stand for, say and promote.


Well to be fair to Autism Speaks many people on the spectrum can't live independently or use a toilet it is part of living with Low Functioning Autism. It is not as you suggested a gross and misleading statistic.

As for all the achievers you mentioned the thing that they have in common is that they are High Functioning or bear Asperger's Syndrome. The thing is that is very different from the life that you would have to live if you are nonverbal, can't live independently and likely have epilepsy. It is just a different world and what Autism Speaks by proposing a cure is doing is advocating for those people. The fact is simply that if you have Asperger's syndrome chances are you don't know what it is like to have Low Functioning Autism.

And as for not talking about Autism Heroes. Well I have seen much praise delivered on to Temple Grandin by Autism Speaks for the way she has helped expand our horizon of the condition.


I suspect that if I or anyone else represented the most able part of the spectrum as representing the whole spectrum, the curebies would find that offensive. Yet the same curebies tolerate the least able part of the spectrum being used to represent the whole, and deem this honest.

Also I wonder if you are familiar with the distribution of characteristics called the normal curve (also called the bell curve). It represents how in any population, those characteristics vary. Have a look at one; you will see that each tail represents a percentage, the very highest and the very lowest. Most people fall in the other segments, and most of those in the middle (or highest part) of the bell curve. That's why you can't use one tail of the bell curve to make claims about the whole. Organisations that do that tend to have a vested interest in doing so.

These threads are legion on WP, and there is nothing new to be said, so I am out.
I think I will bob out as well unless AsPartOfMe still would like to keep this going. I get this this topic has been discussed to death on this forum. Anyways I really enjoyed discussing/debating with you on this topic I don't know how many times you have done in Real Life or on the Internet but it has been fun.

I am aware their is some overlap of characteristics between being High Functioning and Low Functioning Autism that serves to make things a little confusing. Jim Sinclair for instance he was diagnosed with Low Functioning Autism and then was able to communicate with the world at age 12.



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01 Oct 2016, 1:01 am

I quess we agree to disagree on how to react to the changes. You accept them, while the changes give me hope I still am very weary of thier intent for the reasons I stated. Time will tell, I hope you are correct.

Until the next time :D


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01 Oct 2016, 1:08 am

ASPartOfMe wrote:
I quess we agree to disagree on how to react to the changes. You accept them, while the changes give me hope I still am very weary of thier intent for the reasons I stated. Time will tell, I hope you are correct.

Until the next time :D
I guess only the future will tell us.

Anyways thanks for spending time to engage in a forum argument, might no be the best use of time for either of us but I really enjoyed that.

Just on last question out of curiosity but is their an Autistic advocacy organization you subscribe if so what one is it?



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02 Oct 2016, 2:40 am

I get alerts from ASAN. I have not subscribed but read blogs from the Autism Women's
Network at times.

You will not like it but I have "friended" Boycott Autism Speaks.

YouTube Channels.
I found "The AnMish"'s videos very helpful when I got diagnosed. The "Ask an Autistic" channel is very good. I have subscribed to the brand new "The Antique Autistic" channal by WP's Vickigleitz.

I often just search recent blogs, Youtube videos on Aspergers and Autism to see if something interesting comes up.

Some of you might be surprised but I do read anti ND blogger Jonathan Mitchell.


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It is Autism Acceptance Month

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


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02 Oct 2016, 4:27 am

ASPartOfMe wrote:
I get alerts from ASAN. I have not subscribed but read blogs from the Autism Women's
Network at times.

You will not like it but I have "friended" Boycott Autism Speaks.

YouTube Channels.
I found "The AnMish"'s videos very helpful when I got diagnosed. The "Ask an Autistic" channel is very good. I have subscribed to the brand new "The Antique Autistic" channal by WP's Vickigleitz.

I often just search recent blogs, Youtube videos on Aspergers and Autism to see if something interesting comes up.

Some of you might be surprised but I do read anti ND blogger Jonathan Mitchell.


Interesting, I am subscribed to both Ari Ne'eman and Autism Speaks and read what they have to say regularly over twitter. I guess it is always good to see both sides of the spectrum in this case.

ASAN I find to be interesting in part because I do feel as though it rose in part because of the bad rhetoric set in stone by Autism Speaks. I don't consider myself anti ASAN due to the fact I am impressed by the other initiatives the organization has been successful in lobbying. Overall I would also say that Autism Speaks and ASAN probably have more they want to get done mutually it is just that they are in disagreement over the way they represent autistic people.



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02 Oct 2016, 5:57 pm

You will not like it but I have "friended" Boycott Autism Speaks.

I've also done that as well. I look forward to the feeds that I get from them, especially every time April rolls around.


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02 Oct 2016, 6:00 pm

CockneyRebel wrote:
You will not like it but I have "friended" Boycott Autism Speaks.

I've also done that as well. I look forward to the feeds that I get from them, especially every time April rolls around.
Great but are their many Autism Speaks supporters on the forum or would I alone in this?



Last edited by Shahunshah on 02 Oct 2016, 6:01 pm, edited 1 time in total.