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wozeree
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05 Feb 2014, 7:47 pm

I was just reading up on it. I read JER's resignation letter - I think Alex posted it here a while ago, but I hadn't remembered reading it. JEr is very eloquent and he makes good points. And S. Wright says many things that I do not agree with, but they are also working to get insurance coverage for Autism - that's pretty amazing. Won't that help a lot of you guys?

I feel like this whole thing needs time. I'm really glad that there are so many parents of Autistic kids who know that what AS says about them is not true, and in time maybe we can make more progress with them. But look at this way, if you had a kid that was flunking all of his classes then suddenly he got straight Ds, wouldn't you encourage him rather than beat the crap out of him?



ASPartOfMe
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06 Feb 2014, 1:50 am

Both neuromajority and Autistics are human but we have a neurology that is pervasively different. While it is possible for neurotypicals to understand Autistics and what they want and feel this is very difficult. Autism Speaks most certainly does not understand and disagrees with what a lot of Autistic s want.

Yes they want to get me insurance while killing off most of who I am because they think who I am is a bogeyman that breaks up marriages, ruins lives etc. I think the second bad part more then offsets the first good part.

Even when they seem to giving the adult Aspergers point of view they really are not. By publishing this blog http://blog.autismspeaks.org/2010/09/04/itow-fjeldsted/ they seem to the giving the "high functioning" Aspergers people a voice. A little background is needed. This blog is a lengthy read and there are a lot of comments and you need to read to understand where my opinion about this is coming from. Many parents of "low functioning" Autistic s think Aspergers people are elitist abelists who should have no right to an opinion in how they deal with their children. They share the same highly negative view of Autism as Autism Speaks does because dealing with there Autistic offspring is a 24 hour 7 day a week struggle for them. The blog received many angry responses in the comments section. While the blogger did not literately say she looks down on low functioning autistic's her use of words can reasonably make one think that she was implying that. Most of the people commenting felt that she was an elitist ableist. Interesting that with all the "Aspie" blogs out there Autism Speaks published one that seems ableist. I do think the choice to publish this particular blog was deliberate. I think it was done to discredit Adult "high functioning" advocates who have been the leading critics of Autism Speaks. This was done to validate and further the anger people who already felt hostility to Adult "Aspie" advocates


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wozeree
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06 Feb 2014, 2:06 am

ASPartOfMe wrote:
Both neuromajority and Autistics are human but we have a neurology that is pervasively different. While it is possible for neurotypicals to understand Autistics and what they want and feel this is very difficult. Autism Speaks most certainly does not understand and disagrees with what a lot of Autistic s want.

Yes they want to get me insurance while killing off most of who I am because they think who I am is a bogeyman that breaks up marriages, ruins lives etc. I think the second bad part more then offsets the first good part.

Even when they seem to giving the adult Aspergers point of view they really are not. By publishing this blog http://blog.autismspeaks.org/2010/09/04/itow-fjeldsted/ they seem to the giving the "high functioning" Aspergers people a voice. A little background is needed. This blog is a lengthy read and there are a lot of comments and you need to read to understand where my opinion about this is coming from. Many parents of "low functioning" Autistic s think Aspergers people are elitist abelists who should have no right to an opinion in how they deal with their children. They share the same highly negative view of Autism as Autism Speaks does because dealing with there Autistic offspring is a 24 hour 7 day a week struggle for them. The blog received many angry responses in the comments section. While the blogger did not literately say she looks down on low functioning autistic's her use of words can reasonably make one think that she was implying that. Most of the people commenting felt that she was an elitist ableist. Interesting that with all the "Aspie" blogs out there Autism Speaks published one that seems ableist. I do think the choice to publish this particular blog was deliberate. I think it was done to discredit Adult "high functioning" advocates who have been the leading critics of Autism Speaks. This was done to validate and further the anger people who already felt hostility to Adult "Aspie" advocates


That's very interesting - I was looking at all the different articles they had, they don't look hostile, but then I didn't read them. Hmm. Ok, I'll read it tomorrow.

What is an abelist again? I know I read it here a lot, but I've never understood it.



littlebee
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06 Feb 2014, 2:49 am

ASPartOfMe wrote:
Interesting that with all the "Aspie" blogs out there Autism Speaks published one that seems ableist. I do think the choice to publish this particular blog was deliberate. I think it was done to discredit Adult "high functioning" advocates who have been the leading critics of Autism Speaks. This was done to validate and further the anger people who already felt hostility to Adult "Aspie" advocates

I do not have that much time to comment on this thread today, but a question-- how many blogs are they publishing by aspies? Is this the only one? I was unable to discover a catalog of their blogs, etc. Anyway, if it is the only one, then that material is so obviously inflammatory there could conceivably be some kind of motive behind publishing it, but if it is one of many, then it could be a matter of giving different points of view.

If it is the only aspie blog they have published, then it is indeed odd. Personally I think these two kinds of autism should be kept separate, but not in any way for the reason she thinks they should be. I just think it is just more practical.

I do not know about the material being ableist, exactly. I would have to read it again.



wozeree
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06 Feb 2014, 2:59 am

Ok, so I looked up the definition of ableist and read the blog. I see your point sort of.

So I get that the blogger was arrogant and an ableist (now I do, ha) - so you are saying that you think that they set the guy up - let him talk just so they could all attack him and prove what jerks Aspies are? And this is because they can't allow any "good" representations of Autism to pollute their campaign of how awful it is.

There are a lot of ableists on this forum too, not saying they're jerks, but I don't get it.

Somebody should get Jen & Kingdom of Rats (at least) on Oprah to show the general public what low functioning autism really is. That label is just too confusing. I had no idea that low functioning people could be smart and witty and insightful, or that they could go to school or raise chickens or hold jobs. I always thought they were sort of out if it all the time. People just need to be educated. I suppose it's true that some people won't want to be educated, but some will.

Anyway, thank you for explaining your perspective to me - I will have another look around there and be a little more critically observant.



ASPartOfMe
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06 Feb 2014, 4:21 am

It would be great if Kingdom Of Rats and Jen got on TV. Carly Fleischmann is a representative of so called low functioning Autistic s that gets on TV a lot.
Background video
http://www.youtube.com/watch?v=34xoYwLNpvw

http://carlysvoice.com/home/samples-of-carlys-writings/
https://www.facebook.com/carlysvoice

When I found the blog I was not researching Autism Speaks but reaction to the DSM 5.

As far as critically observant being negative or looking at the dark side it is just my way of compensating or over compensating for having poor people reading skills. While it does keep me away from trouble it is not always a fun way to be and can keep me away from positive experiences.


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pensieve
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06 Feb 2014, 4:29 am

I follow Autism Speaks on Facebook. I like to read their articles and comment. I come across a handful of parents with severely autistic children and a pattern has begun to emerge every time someone with autism talks about not wanting to be cured or changed in some way to be more NT.

"Well, that's great you can do.....but you're not non-verbal."

They even go as far to say that high functioning autism should not be on the spectrum and these people ought to not be diagnosed.

There's a minority of parents with HF kids who stand up for them and I'm very grateful.

But all the articles, the videos and the research just caters to these parents. Diets, the gut-theory, and whatever else is just put up for those parents who are desperate to stamp out their kids autism. Most of it borders on conspiracy theory.

Sorry for the blunt generalizing but I'm in rush. Will try to edit my post later.


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littlebee
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06 Feb 2014, 3:57 pm

wetsail wrote:
littlebee wrote:
Exactly WHY does an autistic person need to be on the board of Autism Speaks?

If an organization claims to represent a group of people, the least it could do is actively include at least one of those people to represent themselves.


If I am not mistaken, they did have an autistic person on the board and he quit (because of philosophical differences).. Apparently this message is the straw that for him broke the camel's back.
http://www.wrongplanet.net/postt244978.htm
l
Quote:
For the past four years I have worked very hard to defend Autism Speak after a series of public relations missteps; beginning with the I Am Autism video. The most recent “Autism Speaks Point of View” http://www.autismspeaks.org/news/news-i ... all-action shows me that my words and efforts have had no real impact on the beliefs of the actual leadership of the organization. I see where he is coming from, but after reading it at least three times if not more, I do not find it so bad myself.


In any case, there was an autistic person on the board. Some other points you made I am not sure if I agree with. but will respond later.

Thanks to people for trying to enquire here to the best of our abilities.



KingdomOfRats
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06 Feb 2014, 5:40 pm

ASPartOfMe wrote:
It would be great if Kingdom Of Rats and Jen got on TV. Carly Fleischmann is a representative of so called low functioning Autistic s that gets on TV a lot.
Background video
http://www.youtube.com/watch?v=34xoYwLNpvw

http://carlysvoice.com/home/samples-of-carlys-writings/
https://www.facebook.com/carlysvoice

When I found the blog I was not researching Autism Speaks but reaction to the DSM 5.

As far as critically observant being negative or looking at the dark side it is just my way of compensating or over compensating for having poor people reading skills. While it does keep me away from trouble it is not always a fun way to be and can keep me away from positive experiences.

thanks ASPartOfMe and Wozeree.
autism speaks certainly dont speak for us either and with all respect neither do parents,am fed up of parents thinking we are all incapable of communicating our opinions.
had had a conversation on a FB group recently with a man who tried to make a aspie neurodiverse supporter feel guilty for including those of us with severe and profound autism in his positive message of the spectrum;he said to that user he might be proud of being who he is and proud of his talents and qualities but those of us on the lf spectrum arent able to be proud of ourselves,we dont like who we are,and dont have anything positive about us.
had soon put him straight as this autistic has a lot to be proud of, talents and qualities dont have to be in the form of qualifications,applying high functioning thinking to us wont work,we are at peace with ourselves and dont need telling by anyone we need curing,we need better methods around our worst impairments though.

alongside mencap and some buddies of mine on the NHS trafford learning disability team am actualy training the hospital that started the whole NHS on learning disability and severe autism soon as its the UKs learning disability awareness week,they are like the hospital version of autism speaks,theyre absolutely terrible towards anyone with special needs and need to be getting a better understanding of us,nearly ended up taking them to court with one experience of mine.



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06 Feb 2014, 5:58 pm

Quote:
But look at this way, if you had a kid that was flunking all of his classes then suddenly he got straight Ds, wouldn't you encourage him rather than beat the crap out of him?


A better analogy would be this one:

If you were dealing with a parent who regularly raped his daughter, and he switched to just masturbating her instead, would you encourage him, or try to take his daughter away?



wozeree
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06 Feb 2014, 6:37 pm

Ettina wrote:
Quote:
But look at this way, if you had a kid that was flunking all of his classes then suddenly he got straight Ds, wouldn't you encourage him rather than beat the crap out of him?


A better analogy would be this one:

If you were dealing with a parent who regularly raped his daughter, and he switched to just masturbating her instead, would you encourage him, or try to take his daughter away?


Yeah, I see what you mean.



wozeree
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06 Feb 2014, 6:43 pm

ASPartOfMe wrote:
It would be great if Kingdom Of Rats and Jen got on TV. Carly Fleischmann is a representative of so called low functioning Autistic s that gets on TV a lot.
Background video
http://www.youtube.com/watch?v=34xoYwLNpvw

http://carlysvoice.com/home/samples-of-carlys-writings/
https://www.facebook.com/carlysvoice

When I found the blog I was not researching Autism Speaks but reaction to the DSM 5.

As far as critically observant being negative or looking at the dark side it is just my way of compensating or over compensating for having poor people reading skills. While it does keep me away from trouble it is not always a fun way to be and can keep me away from positive experiences.


When I said critical, I really meant just looking at it with more focus and analyzing. Before I was pretty much just reading the heading and not really thinking much beyond that. I didn't think you were too negative, you were informative.



littlebee
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06 Feb 2014, 6:43 pm

Ettina wrote:
Quote:
But look at this way, if you had a kid that was flunking all of his classes then suddenly he got straight Ds, wouldn't you encourage him rather than beat the crap out of him?


A better analogy would be this one:

If you were dealing with a parent who regularly raped his daughter, and he switched to just masturbating her instead, would you encourage him, or try to take his daughter away?


Charming analogy--(sarcasm intended:-), but why would your analogy be better? To me it is worse. I don't think the W person's analogy is superb, but it is pretty good in that it makes the particular point that these people are trying to do good and even improving at it (though I don't think their behavior rates an F from what I know). To me the point you are making about behavior being on a relative scale not making something good because it is a little less of the previous behavior does makes sense, but applying the analogy of rape to Autism Speaks goes way overboard and skews the entire value. Is there such a thing as psychological rape by the omission of and or slanting of information, or is this analogy going too far? I think not. People do it to autistics,,,that is the gist of the underlying grudge about Autism Speaks, so do not some autistics do it to Autism Speaks and each other? I am assuming they do, as it is human nature.

This is what I was and still am trying to explain about sorting and grading. In fact I love your message because even though to me what you are saying does not correlate when applied to Autism Speaks, it perfectly illustrates something about sorting and grading and encapsulation in general in regard to brain function.

Don't worry. Enquiry will not hurt anyone here, and maybe I am wrong in that some of the way I am processing data does not make sense even though I feel it does. Just keep the thinking going.



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06 Feb 2014, 7:46 pm

No, Ettina's analogy is a good one. If Autism Speaks is harming people, but then starts harming people less, would you encourage them or continue opposing them because harming people is terrible and no one should do it?

"Sorting and grading" is essentially meaningless. It seems to be a thing you throw at an argument to discredit it, but since no one knows what it means, it fails every time.



littlebee
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06 Feb 2014, 8:50 pm

Verdandi wrote:
No, Ettina's analogy is a good one. If Autism Speaks is harming people, but then starts harming people less, would you encourage them or continue opposing them because harming people is terrible and no one should do it?


No Ettina's analogy is not so good, though I believe she is trying in her own way to enquire and makes an interesting point. The first part about the relative scale makes sense, and I have already acknowledged that, but the application of it is flawed. This point has been made, but maybe I should go into it further as we continue. For now, this is what I wrote to Ettina, now put in bold:

Littlebee wrote::
Quote:
To me the point you are making about behavior being on a relative scale not making something good because it is a little less of the previous behavior does makes sense, but applying the analogy of rape to Autism Speaks goes way overboard and skews the entire value.


In short, it is way overboard to compare Autism Speaks to a rapist---, and also "bad" and "good" does not conform to relative contextual human behavior in the way Ettina and now you seem to be trying to make it in this particular instance. To me the thinking is too black and white. Some might call it autistic thinking, but it seems to me a lot of people of all kinds do it. It does not allow for contextual integration of understanding in that there is no evidence to compare Autism Speaks to a rapist--- but rather assumes other people must assume (put on the clothes of) your context or else they are wrong, which is not enquiry but false authority.

Verdandi wrote:
Quote:
"Sorting and grading" is essentially meaningless. It seems to be a thing you throw at an argument to discredit it, but since no one knows what it means, it fails every time.


As far as sorting and grading goes, you need to try to understand what it means. It is just another way of talking about correlating data by putting this data with other data and omitting some other data assumed and/or perceived to be non-essential. Also, someone or other does seem to be understanding what I am talking about, as a thread I started which focuses in large upon the subject of sorting and grading and has gone into this subject in depth received an average of 1500 hits a day in its first three months, and though it is recently slowing a bit, 2000 hits in the last 24 hours. Out of all these people somebody is understanding what I am saying, which is actually not even that difficult to understand. The human mind works by sorting and grading. You just are not reading carefully. Everything you or I say and think is done by sorting and grading, putting this concept next to this or that one. You cannot negate any argument by saying a person is sorting or grading, as in order to say this, you yourself have to be sorting and grading. It is the way one does it that is significant, not that one IS doing it, as everyone is doing it. I have already explained this to you more than once.



Last edited by littlebee on 06 Feb 2014, 11:51 pm, edited 1 time in total.

EzraS
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06 Feb 2014, 9:02 pm

wozeree wrote:
Willard wrote:
LupaLuna wrote:
Autism Speaks does not represent autistic people, it represent parents with autistic kids. Autism Speaks treats autistic people like soulless things that have a disease that needs to be cure. Where not even human in there eyes.


Indeed. And why would they ever think any differently, when they only see autism in children and don't acknowledge Autistic Adults as even existing, much less being able to speak intelligently about their condition?


EzraS wrote:
it should be called Mothers Against Autism.



:lmao: Absolutely!


You guys really need to go look at their website again.


Fair enough. So far all I have seen is the infamous video.