Aspies For Freedom

I've kinda developed my new philosophy on the cure-debate.  I quote some stuff I've written earlier:

http://www.aspiesforfreedom.com/showthre...#pid157923

http://www.aspiesforfreedom.com/showthre...#pid155742

http://www.aspiesforfreedom.com/showthre...#pid155986

A woman who blames all she's unhappy with on "autism"...

What jewelie said.

There are people designated (I don't necessarily agree with any of the designations) as LFA, MFA, HFA, just plain autistic with no functioning labels attached, PDD-NOS, AS, etc, who want a cure, there are those who don't, and there are those who are somewhere in between or undecided.

I have a problem with the opinion of anyone who believes their opinion on cure is because of the sort of autism they have, no matter what opinion they have or what sort of autism they have or think they have.  That seems like it denies us free choice or the possibility of having difference of opinion based on anything but our type of autism.  It's like saying that our type of autism doesn't allow us any free will or anything.

I like the position Cal Montgomery takes in Defining Autistic Lives, and not just because she's a friend or anything.  She has a very long and very good critique of the idea of high and low functioning, that mirrors my own critiques in many ways.

She then also writes:

Which also sums it up very well to me.

She also writes, at the very beginning:

Which in a much more articulate way than I can manage, manages to get across the idea that it's possible to disagree with someone who has that much trouble communicating, without wanting to 'censor' them.  (I don't know why I'm so often accused, when I disagree with people who have that much trouble communicating, of wanting to 'censor' those I disagree with just because I disagree with them, but I don't, and I believe the same things Cal writes in that paragraph there.)

(I should note, also, that Cal and I are also both people who have been considered high-functioning at some points in our lives and low-functioning in others, and that this adds an interesting perspective on what the terms actually mean, having been considered both so readily.)

(Also adding, I saw a further interview with Sue Rubin where someone tried to tell her something like "What about all those autistic people who sit around banging their head?" and she sounded annoyed as she tried to convince the guy that she did all that stuff too.  If she can get that crap, we all can, that's for sure.)

im confused...

first she says...

then she says...

so if the first quote is true, then how did she manage to to write this? i understand the difference between writing and talking, but she sounds very high functioning to me. im far from well informed about the differences between HFA and LFA, but to me, she sounds more like someone with severe AS, than moderate LFA.

can anyone shed some light on this for me?  am i tring to draw too thin of a line here? is it just me or does anyone else find this fishy?

more info i found about sue...

http://www.sue-rubin.org/

I can verify that this happens.  That's how my diagnosis worked when I was younger (although they chose -NOS diagnoses rather than Asperger, because a lot of what they were trying to treat were extreme issues in some aspects of word-based communication), because a diagnosis of autism would be like telling the insurance companies I was hopeless and to either not fund me or to lock me up and throw away the key.  From what I have read later by parents, that was very common at that point in time.

And, unrelated to what you just said, I think the assorted argument over whether someone is LFA or HFA or AS misses the point, although it does show how difficult it is to categorize any one person.  But from what she has said, for her first 13 years, she did not understand any speech at all, consciously, and tested consistently at an "infant" level on IQ tests.  She only began to understand words after she began to type the words she'd learned without conscious understanding, and then her mind started sorting out how to understand them.  And now she seems to actually cling to words as the only things she really understands, instead of as something that make no sense to her.

The part where expressive language outstrips receptive is confusing to some people, but I do identify with people who describe that disparity, regardless of whether they can speak or write, and regardless of how early they learned to do so.  (Meaning regardless of whether they are regarded as HFA, LFA, AS, PDD-NOS, or none of the above.)  Because I have always had expressive higher than receptive.  (Even now receptive is only 80% of expressive even in my best language medium which is written language, and now is the time I am the best at either one in that medium.)  Unlike Rubin, I don't find language comfortable now.  Donna Williams has always described a similar discrepancy between expressive and receptive, although neither her nor my experience of it was as extreme as Sue Rubin's was for as long.  Although I disagree with both of them on the matter of what 'thought' is (they seem to think only conscious symbolic thought is thought, and that's still not my best version of thought, but I'm clearly thinking, so I disagree).  

At any rate, I have always found it hard to classify people as LFA, HFA, and AS, and I don't think it's all that useful to sit around fretting about whether the terms apply.  Cal Montgomery had a brilliantly-worded response I wish I could have said, as part of her description of the two of their relative "functioning levels".  (She's someone who, like me, went the opposite direction from Sue Rubin in terms of how people imagined our functioning levels to be.)

I'll quote her further in case people are too lazy to click this link, but I really think people ought to check out the whole thing which says even more about it than I can quote here:

Which I think is a wonderful analysis of exactly the problems with the LFA/HFA idea and why it doesn't work.  And there's even more stuff in there, so read more of it, it's really cool.

And while I don't like the attitude Rubin's mother comes across as having, I would find it hard to say that someone who had no idea that typing could help her daughter should have somehow mysteriously come up with the idea on her own (it's very rare that people come up with original ideas in all things).  She did try a number of other things, and they didn't work.

Actually, the autistic person with the most severe self-injury I've ever seen had an AS diagnosis.

I keep hearing the words headbanging, biting, flailing, and screaming, put together with the words low-functioning, and repeated over and over.

I find that interesting and odd because these are all things I have known many people who are considered HFA or AS to do, and to have to fight doing.  Why would it be assumed that those with those labels can never do those things?  There are also many people labeled LFA who have never done those things.  And there are many people who are not autistic at all who do those things (for instance some people with severe Tourette have uncontrollable movements and sounds, including some that can be self-injurious or violent).  So why are those emphasized as qualities of "low functioning" people only?

That is one of the things Cal Montgomery addresses in her essay.  I know Cal and I know that she has fought in many of the same ways, and many of the same battles.  But she still has different beliefs.

It's interesting, arguing for people's right to make their own beliefs, but also arguing that in someone's shoes everyone would automatically make the same choices.

It is extremely restricting to assume that everyone would make the same choices in the same circumstances.  People simply don't do that.  There are people who have fought really hard to stop self-injury, stop violent behavior, stop screaming, etc., and fight that battle every day, but disagree with Sue Rubin (in terms of their own personal choices for themselves).  There are people who have never had to fight that battle who agree with her (in terms of their own personal choices for themselves).  The biggest problem I have with saying that being low-functioning or being high-functioning is what determines our opinions, is it takes away our freedom to have different opinions, it states that our functioning level (which is imposed on us whether we believe it is accurate or not) and our kinds and degrees of difficulty in certain areas (real or assumed), are the only things that can determine our opinions.  It eliminates the freedom to make our own decisions.

That's the reason I like that kind of argument the least, whether it comes from someone calling themselves low functioning or someone calling themselves high functioning, and whether it comes from someone saying they want a cure, or whether it comes from someone saying we don't want a cure.  Certainly we can all have our own opinions on these matters, but it seems insulting (even if unintentionally so, from not thinking through the implications for others, or not minding the implications for others) to say that what determines our choices (and in fact forces them into something that is not a choice) is a functioning level, or a specific set of difficulties or strengths or other characteristics.  That really says that autistic people don't make choices, our bodies simply make the choices for us.  And it erases the reality of the many people labeled LFA who don't want a cure, and the many people labeled HFA and AS who do want a cure.

So no, it's not wrong for her to make a personal choice about what she wants regarding a cure.  It is wrong, however, to say or imply that only people considered LFA encounter the difficulties with self-injury and so forth that she has, or fight such big struggles day to day.  And it is also wrong to make it sound like people aren't even making personal choices over cure, it's just being made by their functioning level and that's all there is to it.

I'd really, I know I'm sounding like a broken record myself, but really recommend Cal's article again, because it gets into this in more depth than the things being addressed here.

i think this is a great idea. somebody (preferably someone more tactful than i)should invite her over here. i can really respect her for voicing her beliefs. i think i could learn alot from her.

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.

Darn lack of edit button.

When I say "say words before I knew what they meant," I mean "say words before I knew what words of any kind meant", not just "say words before I knew what those specific words meant".

I think it was beyond her control (I've never asked specifically).  She was always trying not to do it and to find someone who could help her not do it.  She caused a lot of injury that required surgical assistance, but I don't remember details.

Just as for a long time I have had to fight against severe head-banging which is definitely not a conscious decision.  I was very unhappy when I did it on TV, because I'd gone months beforehand without doing it (which I still have to put effort into), and I knew it'd be used to portray me in a certain light (and it was).

  

They tried ABA or Positive Behavior Supports or something like that, as far as I know, and it didn't work.  (She's discussed it in her public writing.)

She said she was taught to type through FC, and progressed to independence.  She also said her mind began to wake up, which seems to mean that she began to think consciously and in symbols/words/etc, whereas before she hadn't, and the information was in there, just not accessible the way it was after typing.  From the sound of it she might have learned to read from learning to type.

While I don't like conformity or just taking an opinion because others have it either, I think it's very mistaken to assume that because a lot of people all have an opinion, they must have got it from trying to conform to each other.  I know that is not how I came by my views (in part through the fact that the way I justify them seems to be very different than most people in the autistic community, for instance I don't seem to have the same definition of "disability" as most people here do, and therefore see no conflict between an anti-cure position and saying that autistic people are disabled), and think it is dangerous to assume that everyone who has any view has them all for the same reason, or that disagreeing with a view a person does not have is merely because of the clash between conformity and non-conformity.

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.