Anyone else *not* have a strong opinion on Autism Speaks?

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Bepidrix
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02 Aug 2022, 9:24 pm

I get why a lot of people on the spectrum can't stand them - I mean, yeah, between promoting that electroshock therapy guy and the whole "I will ruin your family muhahaha" advertisement, they have a cringey history. But perhaps because I'm high functioning and they now publicly acknowledge the existence and legitimacy of HFA as something other than a horrible curse, I find that I can live with them in their present form, their whole "light it up blue" PR stunts and puzzle piece logos.

Full disclaimer, negative preconceptions of autism haven't had a big impact on me, since I grew up pretty sheltered and developed an endearing "sheldon but fuzzier" outer persona that allowed me to charm over any skeptics I disclosed to. (I always disclose). I can see how other people on the spectrum might benefit... considerably less from the less positive portrayals of Autism out there.



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02 Aug 2022, 9:56 pm

I don't have a strong opinion of autism speaks because I'm a foreigner.

To me, they're foreigners with foreign standards, playing within foreign jurisdictions and foreign politics who cannot simply impose the same foreign implementations and receive the same contexts as said foreigners.

:P


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carlos55
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03 Aug 2022, 4:17 pm

I dont probably because i`m not offended by the idea of a cure for autism and see it as a disorder anyway.

This is largely the reasons why some autistic people hate AS. They want to claim autism ( the whole spectrum of severity & not a single condition anyway ) all to themselves.


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03 Aug 2022, 4:42 pm

I started a thread some years ago by ...asking...folks here "why is there so much hatred here of Autism Speaks?".

Got a lot of responses.

Some of their older commercials were quite offensive. And folks told me about policies that they didnt like - and I could understand why they didnt like said policies.

So... I understand the hatred. But I am not expert enough in the subject of Autism Speaks to say whether or not I am hater of them or not.

Some of their recent ads Ive seen on TV are quite touching and nice spots told from autistic kids pov. So MAYBE theyve changed, or not, I couldnt say.



Bepidrix
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03 Aug 2022, 7:14 pm

On the autism subreddit, they are super up in arms about Autism Speaks. I don't think they even allow you to defend it.

Too activist for me. I don't like rocking the boat unless I feel really strongly about something. Besides, I liked the blue puzzle piece logo.

It's nice to meet Aspies who dgaf



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07 Aug 2022, 7:49 am

I am not an American, nor do I live in the USA. So my exposure to this organisation is limited to what I read about them on this forum and see in the occasional YouTube video.

As far as my opinion goes. The limited exposure I have too them, gives me the impression that they are group that does not really speaks for those Americans who have autism. And more for those who have negative experiences with us.



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07 Aug 2022, 9:10 am

Separatism and polarization does not attract me.


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Minuteman
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09 Aug 2022, 9:27 pm

My understanding is the people who say autism can be "cured" are no longer part of Autism Speaks. Add me to the people who dgaf.



Mona Pereth
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10 Aug 2022, 1:20 pm

I think Autism $peaks is a legitimate target for criticism by the autistic rights movement, BUT we should be sure our criticisms are accurate and up-to-date.

For example, I don't think it's a good idea to continue calling them a "hate group." Calling Autism $peaks an anti-autistic "hate group" was reasonable back in the days when they made videos like "I Am Autism" (that portrayed autism as a child-stealing demon) and "Autism Every Day" (in which a woman talked about how she had once considered driving off a bridge with her daughter -- and said this right in front of her daughter!). But that was over 10 years ago, and their tone has certainly changed. If we continue to call them a "hate group," we will succeed only in discrediting ourselves.

Instead of calling them a "hate group," it would be more accurate, at this time, to call them a "paternalistic group."


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Fenn
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10 Aug 2022, 1:25 pm

Minuteman wrote:
My understanding is the people who say autism can be "cured" are no longer part of Autism Speaks. Add me to the people who dgaf.


Autistic behaviors can be modified. If the definition of Autism is behavioral ONLY then that it is possible to “cure” by modifying behavior. If Autism is neurological and has to do with brain development, more brain volume in some places and less in others, or verified differences in brain activity (both things are supported by many scientific studies) then the idea of a “cure” changes significantly. Genetic differences are another possible definition. Between genetic differences and neurological differences are differences between “expressed proteins”, such as hormones or neurotransmitters. There are studies that suggest differences here too. A “cure” that includes behavior AND neurological AND proteins AND genetics does not exist as far as I know, and is unlikely at least in the foreseeable future in my opinion.

The whole “not bad just different” vs “glass half full or half empty” vs “no really, bad and different, not kidding” thing seems strange to me. Personally I can see/experience all three. I know there some for whom there is a lot more “bad” than for me. And some for whom there is less. Some I have met and some I have not.
Will Rodgers is supposed to have said “never judge a man unless you have walked a mile in his shoes”.


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Bepidrix
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10 Aug 2022, 9:51 pm

Mona Pereth wrote:

Instead of calling them a "hate group," it would be more accurate, at this time, to call them a "paternalistic group."


I know this may be an unpopular opinion, but I don't mind paternalism if it involves me getting benefits (or the benefit of the doubt!). If people have a high enough opinion to give us a chance, but a low enough opinion that they are then easily impressed if we perform at a high functioning level, then hell yeah, I'll take it. I fit the positive stereotypes of Aspergers while being able to dodge the negative ones.

I don't need Autism Speaks to shape the public's perception of autism how I want it. I just need them to lay enough of a foundation for *me* to then reshape it in a manner most beneficial to me/us.



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11 Aug 2022, 1:16 pm

Mona Pereth wrote:
. . . Calling Autism $peaks an anti-autistic "hate group" was reasonable back in the days when they made videos like "I Am Autism" (that portrayed autism as a child-stealing demon) and "Autism Every Day" (in which a woman talked about how she had once considered driving off a bridge with her daughter -- and said this right in front of her daughter!). But that was over 10 years ago, and their tone has certainly changed. If we continue to call them a "hate group," we will succeed only in discrediting ourselves. . .

You raise a very good point. As the organization changes, we should be willing to (cautiously) give them a fresh start.

In a similar way, the U.S. veteran’s organization “Wounded Warrior” ran into real problems back in 2016. In fact, the board of directors fired both the Chief Executive Officer and the Chief Operating Officer, mainly because the two of them had allowed the organization to engage in lavish spending with the donations they received.

In addition, Wounded Warrior often presented veterans as objects of pity, instead of emphasizing what the veteran might be able to do with just a medium amount of help. Plus, Wounded Warrior was very aggressive in defending its copyright.

Autism Speaks ($peaks!) has made some of the same mistakes. And yet, I’m willing to (slowly) give them a fresh start.

—————————————————

Okay, the really difficult, big, ugly, confusing topic is that . . .

“research” into autism might mean finding the set of genes and then prenatal testing and, in many cases, selective abortions.

And yes, I’m pro-choice. I believe the decision of whether to continue a pregnancy rests with the woman who is pregnant.

And yet, I’d point to Denmark and Down Syndrome as a cautionary tale. In fact, we could look at this as the canary in the mine.



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11 Aug 2022, 3:39 pm

https://www.theatlantic.com/magazine/ar ... me/616928/

About Down Syndrome:

Dec. 2020:

Quote:
“ . . . All of these people get in touch with Fält-Hansen, a 54-year-old schoolteacher, because she heads Landsforeningen Downs Syndrom, or the National Down Syndrome Association, in Denmark, and because she herself has an 18-year-old son, Karl Emil, with Down syndrome. Karl Emil was diagnosed after he was born. She remembers how fragile he felt in her arms and how she worried about his health, but mostly, she remembers, “I thought he was so cute.” Two years after he was born, in 2004, Denmark became one of the first countries in the world to offer prenatal Down syndrome screening to every pregnant woman, regardless of age or other risk factors. Nearly all expecting mothers choose to take the test; of those who get a Down syndrome diagnosis, more than 95 percent choose to abort. . . ”

95% choosing abortion is sky high.

The author goes on to say that the women who choose not to abort seem more relaxed about tolerating uncertainty.

Plus, the counseling info seems to really emphasize the negative, such as fecal incontinence, which only some persons with Down Syndrome experience.

And then the’s aspect that the genetic counseling is typically done by brainy science types, or at least people who have done well in school. And often a lot of their self-identity is going to be wrapped up in being smart.



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11 Aug 2022, 3:53 pm

https://www.theatlantic.com/magazine/ar ... me/616928/

Quote:
“ . . . In late 2018, Genomic Prediction, a company in New Jersey, began offering to screen embryos for risk of hundreds of conditions, including schizophrenia and intellectual disability, though it has since quietly backtracked on the latter. The one test customers keep asking for, the company’s chief scientific officer told me, is for autism. The science isn’t there yet, but the demand is. . . ”

Yes, I’d say we’re in a race.

On the one side, we want to make the case to the general public and especially future parents that people on the autism spectrum can have worthwhile lives. And on the other side, we have the advancing science.



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15 Aug 2022, 12:15 am

An Autistic person not having a strong opinion about Autism Speaks is like a Jewish person not having a strong opinion about the German Nazi Party or a Black person not having a strong opinion about the KKK.


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16 Aug 2022, 10:20 am

First impressions always last and I have a very special symbol for Autism Speaks to use. It's from a time that I like. :twisted:


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