It was a different webpage with links for various resources……..www.autistics.us and other things……is it in the library at autistics.org?

thanks
Athena

Before I wrote this entry, I’d written something in a private email to someone else. I just found it again. It went:

It’s like grabbing someone’s toe and finding out that it’s attached only after you pull it off and the leg gets infected and they end up losing the whole leg because you didn’t notice the toe was attached to anything.

Which is hardly the same thing as “sacred”.

I don’t think that standards have no place.

I don’t think that everything that looks like improvement to most people’s standards, actually is improvement genuinely.

I don’t think that a functioning level exists in an overall person.

I do think that a person functions at a particular level in a particular thing at a particular time.

I do think that sometimes what is real improvement looks like regression to people who don’t know what they’re looking at and who apply the wrong standards

I don’t think something being attached makes it sacred. I do think something being attached makes it worthy of more consideration than some people give it when automatically discarding it and medicalizing it and turning the whole thing into something awful.

I’d be terrifyingly wrong if I were saying what you claim I’m saying, but I’m not saying it and a longer and more careful (possibly slower also) look around what I write would tell you that.

I’m urging caution in standard assumptions.

I’m saying that sometimes there are better ways to be but they’re not always what people think they are, they’re not always what people see at first glance.

I’m saying that some things don’t translate well.

(And I am sorry for not giving a more detailed reply but I had two very word-intensive interactions with people online today and I can’t get everything into words quite right.)

I’m not saying being one way is never better than another. I’m saying that when people automatically assume it, and start tugging on things they don’t understand… it’s simply never quite that simple. Prejudices creep in all the time, and oversights of things that exist but people don’t look for, in favor of things that might not exist but they see anyway.

Are you implying that there’s no such thing as “better”? Are standards ‘wrong’? Are you better (for example) for being able to use communication methods — of whatever type — than you were before you had access to communication? Helen Keller (as an example of another rather articulate and passionate disabled person who tried to make her own ‘community’ better) sure seemed to think that having access to communication improved her.

So, no, I don’t buy the notion that there’s no merit to “functional levels”, because you yourself say numerous times on this blog, that (for instance) having access to a wheelchair, and being able to get out and about somewhat, has made you better. So you can’t have it both ways. Either standards ARE in fact useful, and having certain skills and abilities are actually better, or they’re not, in which case your aquisition of language is utterly worthless.

Additionally, you seem to think that just because something is (as you put it) “ATTATCHED”, that makes the thing somehow sacred, in the sense of not being something to “tamper with”. Okay, so why exactly DO you take meds to control your seisures? Seisures are, by your own definition, “attatched” to various aspects of your brain, so why don’t you “embrace them” as a wonderfully valuable aspect of yourself? Because having fewer of them (or none at all, if possible) is actually BETTER?

It’s one thing to advocate for better services so that Autistics — or any other populace — can be more fully participatory in the world, and maximize their own potential. It’s a FAR different (and less noble) thing to make the claim that standards have no place, or that improvement is meaningless.

Sometimes you’re brilliant, but other times you are just glaringly, terrifyingly wrong.

It’s hard to avoid seeing others in the light of one’s own assumptions and values. It requires regular (and often uncomfortable) effort to examine one’s own prejudices.

Ah, now I understand…reading back over your post again, I can see how you are indeed referring to a phenomenon within the autistic community.

I’ve seen less of this than the “generic parent thing”, however, I do know what you are referring to…I’ve seen people with an AS diagnosis write on various forums / sites about how maybe they don’t need a cure, but that a cure should still be researched for the sake of those who are “lower functioning”.

I get the impression that the people who write these sorts of things haven’t thought very carefully about what “functioning” really means or (despite their own diagnosis) encountered or even read about people who do not meet either the “high functioning Aspie” stereotype or the “low functioning ‘tragic figure’ autistic” stereotype perpetuated by media, etc.

Which is why writing things such as what you said in your original post is important.

I think that “shaping to who we are” is an important aspect of it. By “who we are” I do not mean “negative personality traits should not change” or anything like that, I mean the general pattern. Find out how we learn best, where our interests lie, what kind of person we are, etc, and go from there. That’s the book in which Hingsburger talks about “finding who God meant you to be and being that person,” and as I said before I suspect even an atheist (or polytheist) could understand the sentiment there.