It's a little early for Autistic Pride Day, but not much.

[conuly]

Somebody on my journal had seen the dreaded video (Aieee!), and mentioned that many of the kids looked "quite low-functioning".

I replied that this is a debateable term, but that I don't feel myself well-spoken enough on the subject to explain my feelings, or the whole debate. I could've directed him straight-away to some of the people I feel are clearest at writing on the subject, but I thought that might be a bit rude - what if they don't want to talk? - so I decided to post here instead.

Ahem. Those of you who have a well-formed opinion on the subject, I would very much appreciate it if you'd post your feelings on the subject of high/low-functioning autism.

On a similar note, I've a few times run into people with autistic kids (or who work with autistic kids), and, as it comes up, I've mentioned "Well, I'm autistic...."

And inevitably gotten "You must be very high functioning" as a reply.

I mean, I'm certain that I fit that vague criteria, but... wow, can you be more insulting? I know they don't mean to be, but... am I the only one who finds that statement to be insulting the way it's said?

(When it is, I immediately want to talk about my erstwhile bouts of agoraphobia, and the times I've, as I put it, "forgotten how to walk", always an unpleasant experience.)

Comments

[shalanna.livejournal.com]

I think they're trying to compliment you. They probably just don't know what to say because their concept of autistic is so mainstream. I wouldn't take offense at them saying that. Now, if they'd made some snide remark, it would be insulting, but that definitely isn't, to me. However, your mileage may differ.

[conuly]

They're people who deal daily with autistic kids/adults. I would hope they have a good view of autism. I haven't had this reaction from random people (friends) whom I've mentioned it to, whose view of autism I would expect to be more restricted than the first group.

It's strange. Of course, the only way for me to find out more is to mention it more, and I'm not sure I want to do that....

Your icon fascinates me. It reminds me of a toy I had as a child which I'd forgotten, and now I miss.

[wakasplat.livejournal.com]

It is insulting. A compliment would be phrased differently. Although I doubt the intent is specifically to insult you, it's not to compliment you either (and "not intended as an insult" doesn't mean "not insulting"). It's more to maintain their little mental framework around what "autistic" means to them as efficiently as possible, by ejecting you from a particular category as quickly as possible.

[yonjuunana.livejournal.com]

My main problem with functioning labels is that the divide between low and high functioning autism seems to be blurry or nonexistant. Autism seems to be a huge spectrum with varying degrees of traits showing up in people, so splitting it into two categories really doesn't work. Also, people can seem very "low-functioning" as children but grow up to seem much less autistic, and other people have abilities that fluctuate all over the place.

I've also gotten the "You must be very high functioning" comment in response to people learning that I'm autistic. Usually followed by them talking about how "low-functioning" autism is something entirely different and "devastating", or implying that. Although I guess I am considered "high functioning" I mostly find it insulting because I don't believe in dividing people into functioning labels, and "you must be very high functioning" seems to be a frequent excuse for people to disregard everything I have to say about autism as a whole. Plus there are certainly times where I have difficulties that probably make me seem much less "high-functioning".

[failstoexist.livejournal.com]

I think there's quite a difference between not being *able* to express yourself verbally and not wanting to. I mean, I've seen autistic kids as well as young children who don't have too many verbal skills yet...struggling to communicate. Then I've seen autistic kids who are rather happy to sit, maybe sing to themselves, maybe make noise but not talk...not really minding that other people don't understand them unless they really need something.

I know it's mostly a continuum, but it's incredibly different to communicate with, say, someone like you(who would be considered "high functioning") and some of the kids I've taught who would be classified as "low functioning"..there are certainly people on all levels in between. And I don't know that it's a question of function...more of communication, self-expression, etc. I've taught "low functioning" people and their parents admitted they weren't sure that their kid would be able to do the things we taught them(have a bar mitzvah, understand soccer/other sports)..it's just a matter of adjusting how you teach and explain things to fit with how they learn.

[wakasplat.livejournal.com]

But... in that sort of thing, what does a person become who is not "in between" at all, but is the extreme of either one depending on context?

[literalgirl.livejournal.com]

I don't attach anything to those observations except factual state-of-being info. I consider myself "high functioning" because I only scream and throw things on the rare occasion when I have a meltdown that I am unable to mediate through cognitive means. I think someone I would consider "low-functioning" might never have the ability to so mediate. But maybe I am wrong. I am generally able to drive, to have a job, even do things pertaining to a job (like talk on the phone) that without the construct of the job around the activity, would be really difficult for me. It's situational.

I consider my son "high functioning" because he has been lucky enough to develop language, despite the pragmatics issues, and can tell me things he is feeling and needs and wants. I consider being totally unable to communicate to be "low functioning", but that doesn't mean "worthless" or "bad" or "suffering" in my OWN MIND when I say it. It's just a sort of measure of what kinds of things I assume in my own mind are going to be easier or harder. BUT, since that is all in my own mind, I suppose the question is where is any shared reference when I might talk to someone else. I suppose that's the real issue, eh? Unless there is one, it might be a slur or a compliment or a judgement or what-have-you when another person says ANY of those qualifiers... That's a pretty good question you posed there. :-)

[ser-kai.livejournal.com]

I find it irritating. Do they know how much work it takes to look like this?!? ;-)

One of the things I like about our new case manager is that she seems to 'get' those kinds of things. It doesn't hurt that she's cute too. ;-)

[wakasplat.livejournal.com]

I don't believe in a high/low functioning distinction either. It's too simplistic and only takes a few characteristics into account, and only, for that matter, the most superficial of appearances of those characteristics. The definition changes with the definer, based on which areas of what they see as functioning, they find important, and which areas they think they perceive. (As well, of course, as assorted interests in dividing people up for power-related reasons.)

Not to mention, people seem to think they have this window into people's functioning in any particular area by just looking at them. I have a friend, and we have pretty much equal skills in most areas. I have far, far, far less usable speech than she does, and I don't pass as well as she does for non-autistic.

Despite our overwhelming commonalities, people view us as these vastly vastly different "functioning levels" based on a few mostly-cosmetic differences. They overestimate her and they underestimate me (they also do the opposite to each of us, but less often). Some people have thought we were joking when we said that in terms of autism there's little difference between us. (But of course had they seen her when she was a little younger than I am now, they would have not necessarily called her "high functioning".)

I've probably known hundreds of autistic people. I've known a few very well and a lot as acquaintances. I've known them inside institutions that I was also an inmate of, in special ed classrooms (that I was a 'student' in), and on the outside, and on the net, and so forth. I've spent time being considered both low-functioning and high-functioning (officially I've only been considered low-functioning, but some people call me high-functioning at other times), and I'm the same person the whole time, there's no sense of overwhelming difference in who I am or even what I can do.

I've never met anyone who fits any of those simplistic ideas. And since I try to only use words that are useful and convey information rather than take information away, I don't believe in the terms high-functioning and low-functioning. They are meaningless.

[leora.livejournal.com]

I'm guessing that part of why it annoys you is the same thing that annoyed me when I would say, "I'm blind" and someone would feel the need to pipe up with "legally blind" or "but not all blind". I felt cast out of a category I fully fit into by people who weren't in it and didn't understand it as well. None of the blind people I spoke with felt a need to constantly remind me that I wasn't 100% blind. They were happy to discuss their experiences and hear about mine and accept that various different blind people face different, but generally related and similar problems. It's the same with disability. I don't like people minimizing my disability. Part of this is because it's invisible, so it's far more often underestimated than overestimated. But autism is invisible too, so may be similar. People see me out, functioning, and speaking intelligently, and so they just assume I can't be that disabled. In reality, I am massively and severely disabled, but they don't see that. And it will piss me off if they try to write off the disability without even knowing much about it. Yes, you can't see it, but that doesn't mean it's not there. It's a way of dividing people and saying you're not part of this group, and if you really do belong in that group, it kinda sucks.

[shalanna.livejournal.com]

I think they're trying to compliment you. They probably just don't know what to say because their concept of autistic is so mainstream. I wouldn't take offense at them saying that. Now, if they'd made some snide remark, it would be insulting, but that definitely isn't, to me. However, your mileage may differ.

[conuly]

They're people who deal daily with autistic kids/adults. I would hope they have a good view of autism. I haven't had this reaction from random people (friends) whom I've mentioned it to, whose view of autism I would expect to be more restricted than the first group.

It's strange. Of course, the only way for me to find out more is to mention it more, and I'm not sure I want to do that....

Your icon fascinates me. It reminds me of a toy I had as a child which I'd forgotten, and now I miss.

[wakasplat.livejournal.com]

It is insulting. A compliment would be phrased differently. Although I doubt the intent is specifically to insult you, it's not to compliment you either (and "not intended as an insult" doesn't mean "not insulting"). It's more to maintain their little mental framework around what "autistic" means to them as efficiently as possible, by ejecting you from a particular category as quickly as possible.

[yonjuunana.livejournal.com]

My main problem with functioning labels is that the divide between low and high functioning autism seems to be blurry or nonexistant. Autism seems to be a huge spectrum with varying degrees of traits showing up in people, so splitting it into two categories really doesn't work. Also, people can seem very "low-functioning" as children but grow up to seem much less autistic, and other people have abilities that fluctuate all over the place.

I've also gotten the "You must be very high functioning" comment in response to people learning that I'm autistic. Usually followed by them talking about how "low-functioning" autism is something entirely different and "devastating", or implying that. Although I guess I am considered "high functioning" I mostly find it insulting because I don't believe in dividing people into functioning labels, and "you must be very high functioning" seems to be a frequent excuse for people to disregard everything I have to say about autism as a whole. Plus there are certainly times where I have difficulties that probably make me seem much less "high-functioning".

[failstoexist.livejournal.com]

I think there's quite a difference between not being *able* to express yourself verbally and not wanting to. I mean, I've seen autistic kids as well as young children who don't have too many verbal skills yet...struggling to communicate. Then I've seen autistic kids who are rather happy to sit, maybe sing to themselves, maybe make noise but not talk...not really minding that other people don't understand them unless they really need something.

I know it's mostly a continuum, but it's incredibly different to communicate with, say, someone like you(who would be considered "high functioning") and some of the kids I've taught who would be classified as "low functioning"..there are certainly people on all levels in between. And I don't know that it's a question of function...more of communication, self-expression, etc. I've taught "low functioning" people and their parents admitted they weren't sure that their kid would be able to do the things we taught them(have a bar mitzvah, understand soccer/other sports)..it's just a matter of adjusting how you teach and explain things to fit with how they learn.

[wakasplat.livejournal.com]

But... in that sort of thing, what does a person become who is not "in between" at all, but is the extreme of either one depending on context?

[literalgirl.livejournal.com]

I don't attach anything to those observations except factual state-of-being info. I consider myself "high functioning" because I only scream and throw things on the rare occasion when I have a meltdown that I am unable to mediate through cognitive means. I think someone I would consider "low-functioning" might never have the ability to so mediate. But maybe I am wrong. I am generally able to drive, to have a job, even do things pertaining to a job (like talk on the phone) that without the construct of the job around the activity, would be really difficult for me. It's situational.

I consider my son "high functioning" because he has been lucky enough to develop language, despite the pragmatics issues, and can tell me things he is feeling and needs and wants. I consider being totally unable to communicate to be "low functioning", but that doesn't mean "worthless" or "bad" or "suffering" in my OWN MIND when I say it. It's just a sort of measure of what kinds of things I assume in my own mind are going to be easier or harder. BUT, since that is all in my own mind, I suppose the question is where is any shared reference when I might talk to someone else. I suppose that's the real issue, eh? Unless there is one, it might be a slur or a compliment or a judgement or what-have-you when another person says ANY of those qualifiers... That's a pretty good question you posed there. :-)

[ser-kai.livejournal.com]

I find it irritating. Do they know how much work it takes to look like this?!? ;-)

One of the things I like about our new case manager is that she seems to 'get' those kinds of things. It doesn't hurt that she's cute too. ;-)

[wakasplat.livejournal.com]

I don't believe in a high/low functioning distinction either. It's too simplistic and only takes a few characteristics into account, and only, for that matter, the most superficial of appearances of those characteristics. The definition changes with the definer, based on which areas of what they see as functioning, they find important, and which areas they think they perceive. (As well, of course, as assorted interests in dividing people up for power-related reasons.)

Not to mention, people seem to think they have this window into people's functioning in any particular area by just looking at them. I have a friend, and we have pretty much equal skills in most areas. I have far, far, far less usable speech than she does, and I don't pass as well as she does for non-autistic.

Despite our overwhelming commonalities, people view us as these vastly vastly different "functioning levels" based on a few mostly-cosmetic differences. They overestimate her and they underestimate me (they also do the opposite to each of us, but less often). Some people have thought we were joking when we said that in terms of autism there's little difference between us. (But of course had they seen her when she was a little younger than I am now, they would have not necessarily called her "high functioning".)

I've probably known hundreds of autistic people. I've known a few very well and a lot as acquaintances. I've known them inside institutions that I was also an inmate of, in special ed classrooms (that I was a 'student' in), and on the outside, and on the net, and so forth. I've spent time being considered both low-functioning and high-functioning (officially I've only been considered low-functioning, but some people call me high-functioning at other times), and I'm the same person the whole time, there's no sense of overwhelming difference in who I am or even what I can do.

I've never met anyone who fits any of those simplistic ideas. And since I try to only use words that are useful and convey information rather than take information away, I don't believe in the terms high-functioning and low-functioning. They are meaningless.

[leora.livejournal.com]

I'm guessing that part of why it annoys you is the same thing that annoyed me when I would say, "I'm blind" and someone would feel the need to pipe up with "legally blind" or "but not all blind". I felt cast out of a category I fully fit into by people who weren't in it and didn't understand it as well. None of the blind people I spoke with felt a need to constantly remind me that I wasn't 100% blind. They were happy to discuss their experiences and hear about mine and accept that various different blind people face different, but generally related and similar problems. It's the same with disability. I don't like people minimizing my disability. Part of this is because it's invisible, so it's far more often underestimated than overestimated. But autism is invisible too, so may be similar. People see me out, functioning, and speaking intelligently, and so they just assume I can't be that disabled. In reality, I am massively and severely disabled, but they don't see that. And it will piss me off if they try to write off the disability without even knowing much about it. Yes, you can't see it, but that doesn't mean it's not there. It's a way of dividing people and saying you're not part of this group, and if you really do belong in that group, it kinda sucks.