What is the issue with 'autistic pride'?

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Bloodheart
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26 Mar 2011, 7:16 pm

I feel I am opening up a can of worms here, but I keep noticing people having issue with autistic pride and the concept of neurodiversity...this baffles me, but I get the feeling there's some sort of underlying politics and division of opinions within the 'autistic community'. Is this an Autism Speaks v's Aspies for Freedom/'curie' v's...erm...non-'curies' thing, or am I getting something totally wrong,

I think I need a 'The problem with autistic pride 101' or 'Politics of the autistic community For Dummies'.

Trying to exclude your own views, can someone explain this to me in VERY. BASIC. TERMS.


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26 Mar 2011, 7:19 pm

I find the tension between the two camps disconcerting. I especially resent any implication that I must choose one side or the other.


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26 Mar 2011, 7:43 pm

i think autistic pride is a cure vs non cure thing. i accidentaly started a very confusing argument about this issue earlier today... http://www.wrongplanet.net/postt156241.html i think the argument is definitely more than 2 sided so it becomes confusing quickly when people start thinking about how to be proud and for what purpose etc.



anbuend
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26 Mar 2011, 7:47 pm

Bloodheart wrote:
I feel I am opening up a can of worms here, but I keep noticing people having issue with autistic pride and the concept of neurodiversity...this baffles me, but I get the feeling there's some sort of underlying politics and division of opinions within the 'autistic community'. Is this an Autism Speaks v's Aspies for Freedom/'curie' v's...erm...non-'curies' thing, or am I getting something totally wrong,

I think I need a 'The problem with autistic pride 101' or 'Politics of the autistic community For Dummies'.

Trying to exclude your own views, can someone explain this to me in VERY. BASIC. TERMS.


Just one of many things that has gone on is a long-term, concerted effort to make "autistic pride" sound like something sinister and awful and "not caring about LFAs" and all sorts of other things that it isn't. This has been going on for over a decade now. It has involved bullying (as in, very serious, coordinated bullying), deliberate misrepresentation and misdirection, and a whole lot of other things that are really complex and hard to get into. (And then, to make matters worse, many autistic people seem to have actually adopted the caricatures of actual 'autistic pride' views as their own views, making it much easier to point at those people and make it seem like it's all of us. I sometimes have to wonder if some of the people doing that aren't doing it on purpose in order to make us look really bad.) In more recent years, "neurodiversity" went from being an abstract concept (that I have never fully understood, to almost a term of abuse hurled at autistic self-advocates who have particular points of view, and towards allies of same (interestingly, the allies in question, usually parents, often have to deal with being made invisible by other parents who like to say that "real parents" all share their own point of view, which is ludicrous), in the form of "ND" and the like. So it acquired a lot of very negative connotations that were developed on purpose. These attempts to deliberately misrepresent and prejudice people against self-advocates with those particular views, have recently reached these forums in a quite bizarre, intensely hateful, and manipulative form, and at least some people here didn't realize they were being manipulated and became convinced of what they were being told. (Not that everyone who disagrees has been manipulated, but some people really were manipulated pretty slickly.) And of course even when it hasn't been directed here, most people have heard those points of view by now, and often actually believe a whole lot of things that have their origins in misrepresentations of the fairly varied views of various self-advocates.

That's as plainly as I can put it. I'm not saying that everyone who doesn't agree, is responding to these misrepresentations, but many either are responding to them, or have come up with the misunderstandings on their own, because there are a good deal of misrepresentations that are floating around this forum lately. It's made worse by the fact that some autistic people have actually seen fit to live up to the misrepresensations, for what reasons I can only guess, and then when people run into those people (as in, people with a fairly shallow and/or even outright bigoted version of "autistic pride" or whatever the hell people are calling it these days), they take them as representative, and that doesn't help, at all.

On a personal level, I'm uncomfortable with some things about this but I don't know the words. I've never come at these issues from the point of view of wanting to join a movement or... whatever it is people seem to do a lot of the time. I've come at these issues from the point of view of someone who has certain (fairly flexible, non-ideological) values, and applies those values to various situations, and just happens to apply these values to disability, including autism. And who got considered a leader in that movement just for doing what I thought was right, not because I wanted to be a leader in any movement. The fact that this is so often associated with ideology (and the fact that people have taken things I've said over the years and turned them into ideology when I never intended them as such, which just squicks me on all kinds of levels), is one reason that I often have some amount of discomfort associating myself with it, even though I'm supposedly a "leader" in it. Because I cannot work from within ideology. I have always worked with people who wanted a cure, on issues besides cure -- such as making sure that everyone who can, gets a good form of communication, just as one example. I have never assumed that everyone must have a single rigid ideological position in order to be "on my side", and I've never thought of myself as being on one of two sides. I just don't operate like that. And the way this has been turned into a cartoon caricature with two sides with two separate ideologies slinging mud at each other, that's not what I want to be part of, and it's a distraction from the real issues. I'm incapable of working from within ideology so on a personal level I find myself uncomfortable with what all these things have turned into in most people's minds -- something that I can have little part in, because my brain doesn't work like that.


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DeaconBlues
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26 Mar 2011, 7:49 pm

One camp holds that autism is something that needs to be "cured", that those of us on the spectrum should be made to be more normal in order to fit in with society.

Another camp holds that autism is an essential part of who we are, that erasing this from the human genome would rob our species of something special and necessary.

Each camp, of course, has its extremists - those who would see "the autism gene" identified and its carriers aborted in the womb, and those who would set aside an entire nation to be inhabited only by those on the spectrum, as if that made us somehow "better" than normals. Usually, identifying with one camp will get the other camp to tag you as a member of your side's extreme - kind of like the way that if you say you're Republican, suddenly people will insist you must agree with the silliest things to come out of the Tea Party's far-right fringe, or if you identify as Democrat, it's assumed you hate guns and nuclear power and want to give America back to the aboriginal peoples.


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26 Mar 2011, 7:52 pm

Both camps are marginalised side stories in the big scheme of things. The people making the difference arn't the ones banging the drum beat the loudest or seeking the attention of others. They are getting on with the job at hand.


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wavefreak58
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26 Mar 2011, 7:53 pm

Laz wrote:
Both camps are marginalised side stories in the big scheme of things. The people making the difference arn't the ones banging the drum beat the loudest or seeking the attention of others. They are getting on with the job at hand.


+1

I like this. Just do something positive and do it as best you can.


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26 Mar 2011, 7:53 pm

well, the best analogy I can come up with to simplify things is to compare it to the whole mutant cure thing in X-Men.

You have some people who think all should be cured at any cost, you have some that view that cure be optional. and others who think there should be no cure at all. There are some other views ive heard though suchs as replacing cure with outright killing those on the spectrum or simply deeming them non-human (yes, I have put a book away at work already, fairly recent large volume published that basically argues that everyone with a cognitive disability is subhuman and should be treated as such). Then you have the other side where people thing ASD people are the next step in human evolution and should have control of everything and whatnot. You can also throw in overlap with some metaphysical hoopla nonsense such as indigo children, psychics and whatnot. So yeah very complex subject that really is a complete mess.


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26 Mar 2011, 7:57 pm

X-Men is a very loaded analogy. Each "side" on the X-Men has a large set of traits associated with it, that are not necessarily associated with the different "camps" or WTF ever they are, in the real world. And I've seen people literally decide that they were okay with being autistic, therefore they deliberately must adopt various characteristics of Magneto, which is outright scary.


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Last edited by anbuend on 26 Mar 2011, 7:58 pm, edited 1 time in total.

wefunction
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26 Mar 2011, 7:57 pm

I have Aspergers Syndrome. I accept that this is a Disorder that skews how I perceive information and life can be more difficult for me than for someone who does not have Aspergers Syndrome. I do not think this is a death sentence. I believe that with the multitude of horrible and tragic diseases out there, any reaction to Aspergers that resembles crippling disappointment is a disrespectful overreaction. I do not believe I have a super power, but I also do not believe I am limited. I believe I am an individual with Aspergers Syndrome who must make accommodations to get some things done, and, while I don't think it's necessary, if others want to make accommodations for me, I think that's great.

Because this is my mindset for my child and myself, I have a really difficult time seeing a different point of view that may such AS is a super power-like evolution of the human mind or that AS is a crippling disability. But I also lack ego and a sense of when to quit while ahead...



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26 Mar 2011, 8:23 pm

So, what I'm getting is...

It basically boils down to okay as we are...v's...lets find a cure.
So it is a Autism Speaks v's Aspies for Freedom deal.

I remember seeing a documentary a while ago about the genome project - basically find genes that cause x disabilities, then we can prevent people being born with x disabilities - and how disabled people were up-in-arms about this as it was essentially saying that we as a society view disabled people as less than perfect. By saying we need to prevent disabilities we are saying disabled people are worth less than able-bodied, thus not equal. Which is all a loaded issue...you then have issues like if it could be screened-for it could be seen as eugenics.

So, the issue of autistic pride is similar, but then within the community we have mud slinging from both sides...people who want to cure (either NT or AS/ASD) are viewed as telling everyone who is AS/ASD that they're not equal to NT's, people who want a cure maybe feel it's unfair to be expected to be happy-happy-joy-joy about a disability...particularly one that can be hugely problematic for those who are low-functioning and their families. People get impassioned and end up being overly zealous...and thus the whole big dealio, right?
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So, if I was to say I am in favour of autistic pride and neurodiversity...how much trouble would I get into for that? lol


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anbuend
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26 Mar 2011, 8:28 pm

wavefreak58 wrote:
Laz wrote:
Both camps are marginalised side stories in the big scheme of things. The people making the difference arn't the ones banging the drum beat the loudest or seeking the attention of others. They are getting on with the job at hand.


+1

I like this. Just do something positive and do it as best you can.


I agree in principle.

But when I tried to "Just do something positive and do it as best I could", I ended up with people following me as if I was some kind of leader (and nothing I did made any difference, see Life of Brian), people taking what I'd written and turning it into an entire ideology (and I can't do ideology, which is the ironic part), reporters literally showing up at my door, and all kinds of other things. Including people giving me a place in a movement that I'd never have wanted to take for myself, and listening to me more than they'd listen to other people saying the exact same things for the same reasons, and other people doing anything they could to attack me. And all of these things happening during periods of my life where it was like, I wasn't ready cognitively or emotionally to even understand everything that was happening to me, nor the symbol people turned me into, and often my biggest wish has been to run away and hide somewhere where all the attention, and all the distortions of what I actually meant, and so forth, wouldn't happen anymore.

Which is to say, sometimes those of us who get a lot of attention aren't looking for it, and are actually getting a lot of this attention for doing everything we could. And sometimes those of us who turn into almost a symbol of one "side" or another, don't intend for it to happen, people just do it to us, and we may not even feel like we're on that side or any side at all, but we're not given a choice. And the problem is that most people can't tell apart a person who seeks attention, and a person who has had attention thrown at them when they actually hated it. The only reason that I haven't run off somewhere and hidden, is because I intend to continue "doing something positive and doing it the best I can", and doing that never seems to fail to get me unwanted levels of attention, so hiding is pointless if I intend to keep doing what I've been doing all along.

All I can say is that it is really weird to have all these things thrown at me in ways where I rarely have the cognitive ability to understand what's happening until much later after it's been going on awhile and I've grown a bit and someone's managed to explain it to me. I can't even explain what it's like to have this happen before you can possibly understand what's happening -- it makes me feel raw, uncomfortable, and exposed just thinking about it hard enough to write this.

But anyway, to get to my point, the trouble with assuming that the "loudest" aren't doing anything, is that sometimes those positioned as "the loudest" have been positioned that way by others, rather than because we really want to be in that position ourselves. I've found it really uncomfortable because no matter what I do, there's people who won't believe me about any of this, so I just continue to do what I do, and if they are going to position me that way then they will position me that way. But it isn't my doing, I'm just resigned to the fact that sometimes getting something done means others will engage in this weird "following" behavior and that nothing I can say or do has ever stopped them, short of stopping trying to do what I can, as well as I can. It feels like a catch-22.

Of course, it's possible that neither of you was thinking about anyone in my position. But at the same time, I've seen people assume that just because I've been put in this weird "leader" position then I must not have any real contributions, because real contributions must come from people who didn't get noticed so thoroughly when they contributed. So I figured I'd write this just to explain what's happened over the years. It's very uncomfortable in ways I can't even describe.


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26 Mar 2011, 8:33 pm

I just think its ridiculous to be proud of something that's not an accomplishment...being born a certain way is not an accomplishment its all genetics.



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26 Mar 2011, 8:49 pm

Sweetleaf wrote:
I just think its ridiculous to be proud of something that's not an accomplishment...being born a certain way is not an accomplishment its all genetics.


As was pointed out earlier in this thread (or in the pride poll thread, I forget which), "autistic pride" is about not being ashamed of being autistic, not about being proud of something in the way you'd be proud of an accomplishment.

I don't see the point of being proud of being autistic as an accomplishment, but I do see the point of autistic pride in the same way I see the point of gay pride.



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26 Mar 2011, 8:52 pm

I view the pride that says, "I am satisified with who I am and what I have done." It isn't saying that one person is better than another. It's simply saying that a person is satisfied with his or her accomplishments.

For me, I am satisfied with my accomplishments. And many of those accomplishments came as a result of having Asperger's. Therefore, I am satisified with my accomplishments that are the result of having Asperger's.

Well...that's my personal individual opinion and view of it. Everyone has a right to his or her opinion. I just hope we all respect each other's opinions on such matters as this.


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26 Mar 2011, 9:05 pm

Autism Pride to me is to be proud of my unique personality. :)


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