New, Improved Autism Speaks Slogan!

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And also, including autistic adults in positions of power, doesn't mean, specifically cherry-picking a few autistic adults who happen to already agree with you and your cause (or who mold themselves into agreeing with you and your cause in order to avoid conflict with you, because that does happen) and who won't make waves and who may even help you trash other autistic adults all the time. Which is basically tokenism. It means being open to possibly having your entire premise challenged if you include the voices of a variety of autistic adults.

(I don't read AutismSpeaks so I don't know if that happens there, but those are things I've seen happen a lot in other places.)

Also, I don't recall if Autism Speaks was one of these organizations, but a lot of organizations are founded by parents or other relatives before they even know much about autism or autistic people, and that can also be a major problem in itself. For instance, that lady on the news all the time now, who has an autistic kid, and who was interviewed at one point about "What about autistic adults?" and she said something like "I don't know if they exist or not, or what they're like. I've never met any!" If you imagine that sort attitude (or ones not quite that bad, but close) being poured into an entire organization... yikes.

AutismDiva,
Having been the victim myself in this past year alone of enough intensive cyberstalking to last a lifetime, I have learned and know that cyberstalkers dwell and fester in the dark realm of lies and various intimidations tactics.
Some people be amazed at what I have already dealt with.
Sometimes one of the tactics of a cyberstalker is to even attempt a role reversal, placing themselves as the victim and make false claims that the victim has made threats and is in fact the cyberstalker.

My advice to you, then, AutismDiva,
I think you should speak right out about what's really going on and who's actually been bullied and who's really behind it.
Do keep us abreast of what you are talking about, speak plainly, and if I were you, I'd come right out with it, who it is, and just what you/they are talking about and encourage those who you say have been likewise threatened to do exactly the same.
As long as you tell the truth, AutismDiva, you really have nothing to be afraid of, do you? That's a most valuable lesson among many that this past year has taught me which I am more than glad to pass on to you.

Sometimes there's nothing like a little light and truth shed on what's actually taking place, a little standing of one's ground in the process to send bullies, cyberstalkers, their ilk and their lies running for the hills.
The truth howver, never has to be afraid, the truth never has to hide.


Droopy

Last edited by drooopy on 20 Dec 2007, 5:47 pm, edited 4 times in total.

I'll PM it to you, Lau.

I can see your second opinion but these other two seem nuts to me.

I don't understand why Aspies don't want a cure for their own defect. Even if it's "diversity" or whatever, it's not normal to have AS. It's a physical difference in the brain that leads to behavioral differences, and therefore it should be cured. I understand people not wanting to give up their high IQs, but would you really want to be some awkward nerdsicle? Wouldn't most people rather have... you know, friends?

Second, AS affects millions of people and it's something that changes their lives drastically. Of course it's a tragedy. I don't understand - who would really want to be (or want to have a kid who is) an Aspie? Think! Aspies don't empathize. They don't understand half of what they're being told. They don't get along with others. They don't get included in groups. They don't want to do anything except their narrow interest. Hell, 99% of the time they don't even talk. That sounds like one hell of a tragedy to me.

I personally admire what Autism Speaks is trying to accomplish and I'm in full support of a cure.

You are generalizing.

I'm not defective in any way, thank you very much.

Yeah.
I would sure hate to be a token pseudo Severey/Low Functioning/Classic Autistic Adult who's method of trashing an autistic adult has been swiping then modeling a gross distortions of that autistic adult.
You have my sympathies. Really.


Not to fear. Since the events of this past year or so, more and more are at last hearing from a truly autistic adult and know I certainly do exist, as I've been continuously more willing to communicate with organizations such as AutismSpeaks, as well being much more bold and open to availing myself to many more possibilities and means of exposure than I'd ever been willing to consider before. In time and if all goes well perhaps in due time people will finally get to meet and know that I am here, I am real and what I and my life as a severely/classic/Kanner's autisticI has and is really like -- and I won't even be preaching anybody's agenda, a wannabe 'ambassador of autism, or anybody's token.

Not all differences are defects. Just think about left-handedness or homosexuality. If everyone were "normal", the world would be pretty boring IMO. Moreover, your views about AS are grossly overgeneralized. I'm an officially diagnosed aspie, and I have had friends (including my current boyfriend who is also aspie). I am usually able to get along with others, despite my social difficulties. I have been included (sort of) in groups before. I sometimes want to do things which are outside my range of interests. I don't always seem empathetic to others, but I consider myself capable of empathy. I bet there are other people on this site who defy those stereotypes. (I know my boyfriend, who was diagnosed as PDD-NOS as a kid, then AS as a teenager, also is not like your description.) Most people on this site have also stated that they wouldn't take a "magic pill" cure if it were offered to them. They like being themselves, and so do I. That is no tragedy.

Besides, IMO Autism Speaks has about as much chance of discovering the Fountain of Youth as they do "curing" autism. Autism is a pervasive brain difference which has wide-reaching effects. I don't foresee any kind of "cure" with our current technology. I wish autism organizations would focus on helping autistic people now instead of putting all this research into an unlikely "cure."

It's also not normal to be gay, or a lot of other things. For those who think in terms of talents and deficits (although I don't as much), they have looked for a common deficit for a long time but not really found one, but they do seem to have found a common talent among autistic people that happens to lead to common deficits. (And it's not an IQ-dependent talent, although they've also found that most autistic people have at least normal IQ, and that other tests were not measuring it adequately. Although again, I have trouble with the concept of IQ.)



Nerdsicle?!?!



Which is of course your right to have an opinion, but definitely I disagree with it.

Many of us don't see it as a defect, and while not the same as the rest of society, it's still normal for us. I think the prejudice against "neurodiversity" can be compared to prejudice against ethnic diversity. To me, those who are constantly berating us, calling us brain damaged and wish to force a cure on us are comparable to the old (possibly stereotypical?) KKK described in history books, documentaries and movies.

I do believe that some of the debilitating symptoms of ASD's should be addressed, like hypersensitivity, and measures should be taken to alleviate them. However, on the whole, neurodiversity should not be extinguished like some disease.

I can't speak for other aspies, but I've made an effort to be included in groups, to go beyond my "narrow interests" and to put myself out there like a "normal" person. I would love something to relieve my hypersensitivity and sensory overloads, but I don't need a cure to make me like everyone else. I have a unique perspective on the world, and if someone would actually try to get to know me on my level, they'll find something exciting and different.

The world would be a dull and uninteresting place if everybody thought and acted the same, wouldn't it?

I hear all of you guys getting mad at me again.

@srriv345: I have no doubt that there's a significant difference between being left-handed/gay/whatever and having AS. AS is a medical condition. It's recognized by doctors, therapists, and scientists with a formal diagnosis and numerous studies. There's no "homosexual disorder" or "southpaw syndrome", is there?

@Soopervilin: AS is *not* neurodiversity on its own. It's a small slice of neurodiversity, which is a much larger subject encompassing personality, IQ, talents, beliefs, habits, and dozens more traits. Neurodiversity is everywhere, in everyone, especially NTs. If anything I think Aspies as a group are more the same than NTs. There's plenty of diversity in how people think and act and it has nothing to do with AS. It's silly that you think Aspies are the only ones with different minds. There are 7 billion different minds.

@anbuend: No common deficit? The common deficit is impaired social skills. That's what AS is.

I have seen no more than 10 people on this site who ever mentioned having friends and no less than 10 stating that they wanted friends.


Because they have no groups to go to in the real world.


I never said they can't talk; I said they don't talk, which is a voluntary choice.


Again, there's tons of diversity without AS, which doesn't merit diversity on its own. And there will always be "certain kinds of people" with or without it. AS is a medical condition. It's like saying AIDS and cancer aren't tragedies.

Actually, homosexuality was listed as a disorder in the DSM until 1973. (Interestingly enough, Asperger's Syndrome was not listed in the DSM until 1994.) I think that goes to show that what counts as a "medical condition" is subject to cultural bias, and can change over time. There is no definitive reason why AS must be classified as a disorder and only as a disorder. BTW, one of the leading names in the field, Simon Baron-Cohen, has suggested that AS need not be a disability.

And by the way I'm not mad at you, I just disagree with you. (It does happen.)

Sorry I was unclear, I mean a core deficit that explains every aspect of autism. Many have been theorized, none of them so far work out scientifically. However, certain perceptual and cognitive differences do seem to exist in all autistic people, and the thing common to all of them at the moment seems to be a particular strength, that then results in particular patterns of strengths and deficits depending on how development goes. And the problem with considering autism a social problem (although nobody would argue that in the current world autistic people tend to have social problems, and that this is part of recognizing us) is that the differences that exist in autistic people's thinking and perception are not confined to the social realm, they exist across social and non-social situations equally.



It's still possible to have friends, it can just be really difficult to find people who are autistic-friendly and compatible in other ways. (This is something that can definitely change, too.)



Everyone on this site lives in the real world and participates on this site as a group of people from the real world talking to each other. I didn't think the word "group" was confined to the offline world. But even so, I have met groups of autistic people offline in many locations. It's also less likely that we find groups of non-autistic people that are accepting, but not unheard of.

Are you saying that groups online are not real groups, or that groups primarily composed of autistic people are not real groups?



Can you give any cites for this idea that 99% of "aspies" just "don't talk", when one of the hallmarks of being an "aspie" is quite often talking on and on about one topic?

[/quote]

AIDS and cancer frequently kill people, and it's offensive to people with non-fatal conditions as well as people with fatal conditions to compare the two. There's tons of diversity without any single kind of people (whether disability-related or not), and using that to excuse the idea that it'd be better if that kind of people just didn't exist... I think a lot of people who happen to be whatever kind of people was named, would find that really offensive.

I never said AS is neurodiversity in and of itself, but if you'll look at some of the more vocal autism haters and cure seekers, you'll see they really are prejudiced against people who are different. That is the anti-neurodiversity I was talking about.

Everyone is different, that's true. But should I be forced to change who I am because I function in my own truly unique way that other people don't even try to understand? Frankly, I'm fed up with trying to get people to even consider something other than their own perspective. There's nothing wrong with me, I just think differently.

Don't you think that is our decision to make, not yours?



What can I say? I have never related well to Aspie devotees...I prefer to desired as an individual, not an objective fetish...



Yeah, funny coincidence, most of us seem to feel that a lot of rude, ignorant bigots admire "Autism Speaks" and "fully support a cure".

M

You may have just surpassed me as John Best's object of highest dislike.

I've met some people online who are with Autism Speaks (although I refuse to go on their message board anymore) and have just never heard any other perspective. Same with a lot of parents. You can't blame people for never having heard of a particular viewpoint. It's rare (although not at all unheard of) for people to come up with original viewpoints all the time when all they've heard is other ones. And we're all influenced by the viewpoints we've actually heard.

And once a person's heard a lot of viewpoints it's easier to make a decision which one to support. Nobody's going to totally agree in the end, but just being associated with a bad organization doesn't mean that individual person is stupid or something. I used to think I (and people like me, or presumed to be like me) did not really deserve rights until we followed what the medical system said to do. I now very much disagree with that, but a lot of that disagreement comes from having seen alternatives. (And I'm big on seeing alternatives, because not being able to come up with alternatives on my own has given me a death wish on more than one occasion, and caused me to be extremely miserable and unnecessarily confused and confusing on others.)

I've had the same thing happen in person, when I talked to FEAT meetings. I really don't like FEAT. I really don't think most of the parents associated with FEAT are evil people. I don't even think they all think the same thing. But while I encountered some hostility when I talked at FEAT meetings, I also encountered a lot of curiosity about my viewpoint. Often parents form groups and call it a chapter of whatever the well-known autism organization in their area is, no matter what that is. There's also plenty of people who're actively hostile to the points of view of many autistic self-advocates (or even to the concept that autistic people can be self-advocates), but there's also a lot of perfectly decent people who are interested to talk to us.

I worry that people get elitist about things like this, and assume that ignorance and bigotry are the same thing. Ignorance means not knowing something. Everyone's ignorant about a lot of things. Bigotry is an entrenched and nasty form of prejudice, not just prejudice itself (which everyone also has some degree of). And equating the two... I don't know how to describe it, but it's the same thing that turns off a lot of people to the sort of people who talk about everyone who disagrees with them as mindless "sheeple" and then expect them to actually listen to them. (And I got metaphorically slapped on the wrist myself by Larry Arnold about this one when I grumbled about Send in the Idiots because its author wrote about other autistic people in a tragic light. He pointed out not all autistic people have known any other way to think about ourselves, and that it's pretty elitist to assume we all have access to the same information and perspectives. Doesn't mean that everyone's just "uneducated and going to agree with us if we just educate them" or some crap like that, but it does mean that it's hard to have a perspective when you've never heard of it and you're not up to inventing it.)

At any rate, I've known a bunch of rude bigots who aren't ignorant at all, they've just made a decision to be rude bigots.

Anyway, I find it interesting that what was said about us by another poster was phrased in such a strong way, of being unable to imagine why autistic people would possibly want to remain autistic, that this just wasn't conceivable, and therefore wasn't logical. I find it perfectly conceivable that some autistic people could want to be cured, because that's the dominant viewpoint anyway. I also find it perfectly conceivable that a lot of autistic people don't want to be cured, because I know a lot of autistic people who don't. And, in a way, that's part of the answer to how we could possibly not want to be cured. It's not a matter of how we don't. We just don't, and that's a fact, whether or not it's imaginable.

Last edited by anbuend on 21 Dec 2007, 12:37 am, edited 1 time in total.