A friend of mine linked me to this CNN programme on Autism. I was talking about educating people on Autism and quoting Jim Sinclair, and he gave me this site where an autistic woman talks about supporting a cure. Thought it was a good place to put it up. Here is the link to read all the information, as there are other articles and videos too -
http://edition.cnn.com/CNN/Programs/pres...world.html
I will quote the particular article titled 'Acceptance Versus a Cure'. I also don't agree that her definition of people with Asperger's is accurate.
The argument dividing the autism community regarding the need to cure autism as opposed to accepting autistic people as a natural expression of diversity has been on my mind a lot lately. The possibility that I could be very autistic for the rest of my life always upsets me. Therefore, when people talk about a cure I actually love to hear it. To be realistic, I know I will never be cured. The cause of my autism is a genetic anomaly and can't be changed.
The rift in the autism community basically is between what we label high-functioning and low-functioning people. High-functioning people speak and low-functioning people don't. The people with Asperger's syndrome, also a type of autism, love to talk; however, their very narrow areas of interest give them away. These people are the ones who are offended by the idea of a cure. They could pass for normal although for them, sallying in a normal group is like an uptown elder at a rap concert. They listen only to people who please them and only speak to inform others about their interests. Social skills are difficult to master. I believe the idea that they should be cured is wrong. They are different, but basically are just a variation of the norm and should be accepted as such. Some even have exceptional abilities that should be celebrated and encouraged.
As a low-functioning autistic person who is still really awash in autism, I actually am aligned with the cure group, although I will not personally benefit if a cure is found. Low-functioning people are just trying to get through the day without hurting, tapping, flailing, biting, screaming, etc. The thought of a gold pot of a potion with a cure really would be wonderful.
Since this is not going to happen, I am resigned to living my life as it is -- a constant struggle. When I have to mask autism in class it takes a tremendous amount of effort. When I see the other students sitting calmly or chatting or answering questions so easily, I'm really jealous. When I had to stop awful autistic behaviors like head-banging, it took a tremendous amount of effort over years. When I see people living normal lives, I am jealous. When I am really lost in autism and can't inhibit behaviors that annoy staff, I deflect anger from myself to them and create bad feelings. When I see how normal people interact with their friends I am jealous.
As a person who lives with autism daily and will not live a normal life, I find people who are high functioning and saying society should not look for a cure offensive. They have no idea what our lives are like. Killing autism lets me enjoy a life with great friends and allows me to go to college, but I must never let down my guard or autism will take over. I don't want any more children to live, as I must, in this constant state of war.
Maybe I read it too fast, but is this person saying ALL so-called LFAs want to be cured? Because I know that's not true. Some LFAs don't want to be cured. Some HFAs do want to be cured. We're all individuals. People who can't accept THAT need to be cured!! (of their intolerance)
I reckon that in some ways it can be harder to be HF than LF. If you are LF you may be educated in one-to-one or in a school where other kids are similar and therefore more or less understand. Also becasue their autism is so prominent people will be willng to understand and accept it, and they will not say it doesn't exist.
A HF autistic, however, will almost definitely be in mainstream schooling, where they are likely to be bullied or degraded, where they will struggle to get by. Thier autism is less prominent, so people will still bully and degrade them, and they may claim that it doesn't exist.
It's catch 22 when trying to campaign for no cure though- If an aspie campaigns, they are not 'bad' enough and can therefore never understand, if you're Kanners and you campaign you apparently lack the intelligence to make your mind up, which renders your argument worthless.
I just wanted to say that, although I used the terms LFA and HFA in an earlier post, I too, suspect it is not that simple. Before my daughter started talking, the experts assumed and predicted that she was LFA, which blew my mind because I knew she was perfectly "normal" like me! Then after she started speaking they changed their minds, a bit. When she taught herself to read, another revision. Etc ad nauseum. I see many many similarities among the so-called LFAs and HFAs that I do not believe this false dichotomy. I think low-functioning PARENTS can create low-functioning children. Not that I'm a great parent, I'm not, but I try my f'ing best and have always, ALWAYS loved and accepted my daughter just the way she is. (perfect
)
Forgot to say (Edit button- pretty please!) that in my book acceptance is almost always better than cure. Whether it is sexuality, race, disability, appearance, religion... people have a right to be who they are without being told they're 'wrong' or being punished or having cures and anide comments thrown at them.
I just wanted to say that, although I used the terms LFA and HFA in an earlier post, I too, suspect it is not that simple. Before my daughter started talking, the experts assumed and predicted that she was LFA, which blew my mind because I knew she was perfectly "normal" like me! Then after she started speaking they changed their minds, a bit. When she taught herself to read, another revision. Etc ad nauseum. I see many many similarities among the so-called LFAs and HFAs that I do not believe this false dichotomy. I think low-functioning PARENTS can create low-functioning children. Not that I'm a great parent, I'm not, but I try my f'ing best and have always, ALWAYS loved and accepted my daughter just the way she is. (perfect
)
I reckon that the LF label is often placed on any child who doesn't talk/lives on their own planet etc, regardless of the actual IQ of the child. A lot of people think that autistic people are less intelligent than they actually are. I read that some parents accused Amanda Baggs of feigning autism because she could read and write and their 8 year old couldn't.
It is strange how they put their child's illeteracy down to the autism rather than the age, ruling out the possibility that their child, like many NT kids who struggle at that age, will learn to write fluently as adults.
Well, I think that it's kind of interesting that throughout all of this, this woman hasn't had a chance to speak for herself. To answer to this. She may not even know this is happening. Wouldn't it be only fair to let her know of this discussion, so that she can speak her own mind?
I'd be happy to hear what Sue Rubin has to say in response to all of this. Seeing as how you brought it up you obviously have a way of contacting her, so why don't you let her know this debate is happening?
How dare you say you want a cure, in my presence? No cure!!
If you don't want a cure, then YOU don't want a cure. And I support your right to make that decision. That doesn't give you the right to shout over the top of people who think differently.
I was being sarcastic... sheesh!
Just a piece of advice Batman - if you're going to use sarcasm on the internet, you need to put a smiley face afterwards and just really make it obvious that it is sarcasm. Otherwise don't be surprised if you hurt people's feelings and they take it literally.
How dare you say you want a cure, in my presence? No cure!!
If you don't want a cure, then YOU don't want a cure. And I support your right to make that decision. That doesn't give you the right to shout over the top of people who think differently.
I was being sarcastic... sheesh!
Just a piece of advice Batman - if you're going to use sarcasm on the internet, you need to put a smiley face afterwards and just really make it obvious that it is sarcasm. Otherwise don't be surprised if you hurt people's feelings and they take it literally.
You're right and how about I amend my last response to Joker a little bit:
I was being "half sarcastic" in my last response to you Joker, as in, I feel very passionate about the "anti-cure" sentiment but at the same time you know me not to be a "rough enforcer" as the language used might indicate. Usually when my response seems exaggerated, there's a touch of sarcasm in it.
I'll have to work on using smiley faces from now on.
Possibly. In addition to that though, when I talked about my receptive written vocabulary being 80% of my expressive, I was talking about just the comprehension of individual words. Which means I use more words than I understand, which is a byproduct of learning words by the sort of patterns they make with other words, rather than by their individual meaning, and also a byproduct of being made to learn to say words before I knew what they meant.
RE: the bolded print: I do the same exact thing. I often use words I do not fully understand. In that same vein, I don't understand what you mean by "learning words by the sort of patterns they make with other words." Could you explain that in another way?
From the front page of this very site:
We know that autism is not a disease, and we oppose any attempts to "cure" someone of an autism spectrum condition, or any attempts to make them 'normal' against their will.
So let's get one thing straight: if anyone tries to "cure" an Aspie against their will I'll be the first one waving my placard to stop it. The key words here are against their will.
But if an individual wants a cure, then I don't see what right some random strangers with whom they share nothing but (possibly) a diagnosis, have to get involved.
And if saying that makes me unpopular in Aspie circles, great. If the Aspie community automatically hates someone for daring to think through these decisions for themselves rather than toeing the party line, I don't want to be part of it anyway.
Nobody has to get involved. Apart from my personal words of distaste on the concept, the only thing I said was that AFF is not generally supportive of a cure. I didn't say AFF as a group is against individuals who want a cure--perhaps *I* feel this way a little, but I know such a sentiment is not written on the front page, nor should it be. You're right Ethel, it is up to the individual.
It looks like this makes about the 5th or 6th time I've been added to someone's Ignore list... I don't think that's a good number. I feel it may be comparable to the number of times an NBA player is thrown out of a game, for bad behavior. The more, the worse the consequences.
I'm almost glad that earthmonkey has indirectly pointed out my hypocrisy: I'm pretty much among the most anti-conformist people I know in real life, I almost never advocate for conformity, and here I am propagating a form of it on AFF. Truly, I do believe people should be individuals and think for themselves.
So how can I challenge the idea of a cure--a hot-button topic for me--without making it seem that those who go against the grain, should not express themselves? This is a tough one.
I would like to cure the headbanging, the tantrums I used to have, the extrasensitivity I have to many of the senses, to be able to do things such as laundry and cooking for myself on a regular basis, every imperfection of speech that causes me to blank out and not be able to say anything. However, for me I must only work harder, and some things will probably never go away.
As for the "working harder" part to get through some of the more difficult aspects of your AS: while I cannot speak for you or whatever traits/symptoms you have (to do so would be presumptuous--and for the record my AS is quite mild, so I cannot speak for many of us), I am personally a bit divided on the "we must strive harder than someone without autism" thing.
The reason I say so, is because I think there should be greater acceptance for the idea of autism (and AS/HFA and whatever form it takes) as a diversity, rather than a disability that always needs to be corrected. I'd like more acceptance and credibility for autism as a useful part of human neurodiversity, with both strengths and weaknesses just as could be said for the Social Neurotype (NTs.)
When you say "work harder," you may be referring to other aspects of your version of autism--it may be different from what I am thinking of. But in general I think we should be ourselves and work toward our specific areas of interest, and I do not think--per se--we should always have to work harder to fit NT expectations of behavior.
I've conformed to things most people seemed to do, and gone against things just because they were what most people did, and done things, more or less, whether most people seemed to do them or not. The first two seem more like the problem to me, and more or less identical in consequence.
It can be hard to tell the first kind from the last when the opinion seems similar to most people in a given group. It can also be hard to tell the second kind from the last when the opinion seems to differ. And it can be easy to end up telling people they're either conforming for the sake of conformity, or rebelling for the sake of rebellion. But it's not always what's happening. And even when someone believes something because someone else does, it's not always conformity, it's sometimes because the argument the person has heard from the other person, for believing that thing, makes sense to them, rather than because they're mindlessly conforming or something.
But... yeah. I at least try to avoid accusing the people I'm talking to of just conforming for the sake of it, although that's certainly a strong factor in human psychology and not one autistic people are quite as immune to as a whole, as some people think we are. So it's possible, but I try to discuss it more in terms of generalities than in terms of "Here, you people in particular, this is what you're doing," because a person can be pretty assured it happens in terms of generalities, but as soon as you point a finger at one particular group of people you're more likely to end up wrong.
You might be making it more complex than it needs to be. In my 26 years of observation, I find that a lot of what we call "conformity"--among NTs at least--is at least partly mindless. I find that generally, the majority of people I've observed closely on this, do things that others suggest they should do. Some of it is for their betterment, but most of the time--truly--I think the idea of social conformity/popularity is the greater draw for NTs.
So yes, much of conformity *is* quite mindless, and that is one reason I actually go against it. Although, at this point in time, I'm leaning more toward doing things whether other people do them or not--rather than just a statement against conformity, as it always used to be.