1:51am June 14, 2012

question about reblogging autism things

youneedacat:

allies-person:

drawswithpens:

fourloves:

drawswithpens:

I’m not sure if it’s okay for me to participate in autism communities or reblog autism things because of the following:

1. I’m not really sure I’m autistic, but I AM pretty sure I have NLD. There’s lots of people out there that consider Asperger’s and NLD to be pretty much the same thing, and Asperger’s is considered to be on the autism spectrum, so that was my main justification for doing so before but this leads to…

2. The new criteria in the DSM are going to be more stringent, causing some people with Asperger’s diagnoses to be “cured” of being on the autism spectrum simply by redefinition. I’m fine with Asperger’s and “classical” autism both being considered on the autism spectrum, but I don’t agree with depriving some people with Asperger’s of their autism diagnosis. That being said, I’m not a psychiatric/psychological professional or any other kind of expert so I see my opinion as being just that…my opinion. But the fact of the matter is that I don’t even know if I could get an Asperger’s diagnosis *now*, and I’m pretty certain I wouldn’t be able to get an ASD diagnosis once the new DSM comes out.

3. All that being said, if I were tested for learning disabilities and DIDN’T come out diagnosed with NLD, I’d eat my fucking hat. NLD gives me a lot in common with autistic people, but by no means everything.

I mean, I’m really torn because there’s some things where I’d feel like I’d have a valuable opinion to offer, yet lots of things in autism communities that I don’t relate to either, so I’m really wondering if it’s appropriate for me to participate in them. I’m tempted to just a disclaimer or something before I do so but I get sick of repeating myself.

I know we disagree on a lot of stuff re: autism so if I just say this and you think it’s ridiculous I understand. But I don’t have a lot of respect for the DSM or how professionals talk about autism in general. I have no idea if I could get an ASD diagnosis now either (I mean I could find someone who’s not a dick but so could you, but they are few and far between).

That said like there’s clearly a group of people who have a similar disability to each other that we might as well call autism. I think you have it. There are lot of people who participate in Autistic community/discussion who haven’t been able to get diagnosed or have been undiagnosed or whatever. Because they/we still make sense here regardless of what the DSM says.

(In terms of stuff that you don’t relate to obviously that can mean whatever you want to you, but usually the stuff you say you don’t relate to doesn’t seem like stuff like 100% of people with autism have, and I am always surprised when you take it as a reason to doubt the meaning of all the stuff you do relate to.)

Fair enough. I always feel so warm and fuzzy when an autistic person is all “gabba, gabba, we accept you, we accept you, one of us, one of us.”

Partly it’s a really deep insecurity problem that I have with everything. If I have the slightest reason to doubt something, especially when it’s a situation where for necessity’s sake, I really have to just take my own judgement on something, I tend to see any possible discrepancy as a sign of me being wrong. So if I make a stupid programming error, because I don’t have “I am a good programmer” as an internalized part of my identity and there’s no way for me to find out objectively if I’m a good programmer or not, I tend to doubt my programming ability. Or if I think I might be autistic and then I read something written by an autistic that I can’t relate to, then that puts my whole self-diagnosis into question.

In other words, I’m a neurotic little fuck.

But also I tend to prefer strict, rather than fuzzy definitions for things. So mentally, I find going strictly by the DSM easier to understand, which comes into conflict with the fact that in the real world it may not be a very good description a lot of the time. I tend to find the whole spectrum concept hard to hold in my head, despite agreeing with it. It’s just how my brain works; I haven a tendency towards black-and-white thinking.

Re: insecurity about things, especially about identifying as autistic: I relate to this so much. I had years of insecurity where I would question my status as autistic, generally for spurious reasons. Reading something from an autistic person that I couldn’t relate to, doing something that wasn’t stereotypically autistic, reading something from an autism “expert” that didn’t apply to me…all of that could send me into a tailspin of doubt and thinking that I’m not “really” autistic, but just an unspecified screwed-up person. I’m pretty much over that now, in that I’m pretty secure in my identification of autistic, but that’s only after years of questioning and doubt. Not fun.

I suppose my situation is a bit different in that I was officially diagnosed (with Asperger’s, though I don’t believe in making distinctions) before I ever self-identified. But the method by which I was diagnosed isn’t considered to be fully comprehensive by some, which itself has been a source of angst. At one point I seriously thought about getting another evaluation but was talked out of it by my husband. I may have actually gone through with it if not for him, though.

I’m with you in wanting things to be in clear, precise categories. The problem with that, IMO, is that the DSM (in all editions) is anything but. I really don’t think there is a clear, strict way to interpret either the new criteria or the old. I also heard a talk from Catherine Lord*, a member of the DSM V autism committee, that the new criteria are intended to be interpreted broadly and that the examples listed are not intended to be an exhaustive list. And obviously there is going to be variation among practitioners in terms of how the criteria is interpreted.

Given all of this—and given the fact that one of the objectives of the neurodiversity movement is to de-medicalize developmental differences—I really think that self-identification really should be the basis of identity and community. Obviously you shouldn’t identify if you’re not comfortable with it, but “I’m different from this other autistic person” shouldn’t be a reason to disavow the identification altogether.

*Lord has said and written some really shitty things, including at this talk I was at, but I appreciated these points.

My friends say I always seriously, seriously weirded them out when I talked about this stuff. Because I’d talk about how ultra-high-functioning I must be if I even deserved the label of autism at all. And how I had all these strategies and worked all the time on my ability to pass. (This was back when I could talk, but edging into the time when that dropped away too.)

And like. My friends now tell me. That at least once they had actually seen me in person. They could not figure out how to get through to me that I wasn’t just not passing, I was really, really autistic looking. I remember a few of them saying things to me (when I asked why I was treated differently than someone else) like “Well nobody expects you to be that high functioning.” And I thought they were fucking with my head. I mean functioning labels bothered me even back then, and now they seem like utter pieces of crap, but what people were telling me was that I looked really really frigging autistic. (Mind you: I think the way I looked as a kid would look autistic to anyone who actually knew what it was, but I know I’ve gotten more odd looking with time due to a progressive autism-related movement disorder thing, brain damage, loss of the energy to pass in certain ways, etc.)

I finally started to wake up to it when I went to a DD conference all day. Just hanging out, watching people, thinking except for the wheelchair I probably blended in fairly well. Then at the very end of the day I said something. Typed something. And everyone reacted with utter stunned silence punctuated by whispers of “amazing”. And it finally started dawning on me that I had no clue how other people saw me from the outside.

So I asked my parents to send me their video camera. And I stuck it on top of the television set (I was in a studio apartment) and just let it run for a few hours. Then I played the tape back and it was like Oh. My. Fucking. Gawd. I had no clue how I could run around looking like this and never notice it. Then I remembered things throughout my life about how people reacted to me. Like this proctologist when I was 16 who randomly asked if I was autistic and then jumped when I answered him and said he didn’t know I could talk. And my parents saying to me that with “the way I looked these days” I wouldn’t be allowed to travel by myself because “someone would take advantage of me”.

Then I ordered my entire psychiatric records spanning from the age of 13 onward. (I was 14 when I was first diagnosed.) And got this huge box in the mail full of paper, because my shrink had included all of his handwritten notes and all kinds of stuff. And I found that I was described as having “idiot savant qualities”, as being “low functioning” at the time of my diagnosis, and a lot of other stuff I had no clue about. I found out that there had been a hearing to determine whether I was “salvageable” enough to allow to live outside of a state institution. That was the word they used. And all that time I honestly had no idea, like I knew some of these things had occurred, but it had never registered how people saw me when they looked at me. I’d been in this running battle where I tried to “get better” for them, and inevitably could do less and less stuff rather than more and more (burnout + movement disorder + PTSD + brain damage + etc), and then would beat the crap out of myself, sometimes literally slamming my head on walls and ripping my hair out, because I couldn’t function the way I thought everyone expected me to. But I didn’t expect anyone had noticed this. I mean, I didn’t expect that I looked from the outside, like I had any trouble doing anything at all.

I don’t know how common my level of obliviousness is. But I have known a lot of autistic people who start out believing themselves to be just on the edge of qualifying as anything on the spectrum at all, and eventually finding (once they learn enough) that they actually are very definitely autistic, with no actual question there at all. In fact, that seems very common, even among people you’d really think would have noticed, people who had really really huge delays in learning stuff and were in special ed their entire school career and diagnosed at the age of five and still don’t get it.

For me one of the hardest parts was that I didn’t know what I looked like. So I’d read about autism. And if I read accounts by autistic people (which I did because I was obsessive and now have a collection of probably at least a hundred books by autistic people), I would totally identify with them, I mean some more than others, because we’re all configured very differently from each other. And then I’d read stuff by “experts” and not identify with it at all. And after I figured this all out, I realized the reason the stuff by “experts” never clicked was I didn’t even know the basics of how I appeared to others. And “expert” theories of autism are all about our outside appearances, and their assumptions about what those appearances mean about our awareness and cognition and stuff. And they will subtly work those assumptions into their descriptions of our appearances. Like Kanner would say nonsensical shit like “She never listens to directions but she follows them just fine” and not notice the discrepancy. Kanner, btw, is an interesting read, because most of his patients would now be classified as “high functioning” even though most people who haven’t read him assume otherwise.

And I went through that same exact thing about if I didn’t have one trait I couldn’t be autistic. It drove me up the wall for years because there’s no way to have all the traits. Literally no way, because some of them are mutually exclusive. A lot of what we call “autism” (in terms of the difficulties we have anyway) is actually just various sets of adaptations to a particular way our brains handle information. Like there’s too much of the information, so each of us seems to end up with some channels open and some of them closed, but which ones are which totally depends on the person. And that affects thinking, perception, and movement. And all these differences can affect social skills, they can also affect our ability to relate to others just as equally as their difference from us affects their ability to relate to us, but society being what it is we shoulder the blame for both sides of that one. So basically there is no person who can have all autistic traits. And there may be infinite combinations. Or close.

So I know you won’t stop worrying now. Maybe not for many years. (Hopefully not that long.) But you almost undoubtedly will become more comfortable about all this stuff. That’s been what I’ve seen among autistic people. And if you’re not autistic, big deal. I mean words like autism only serve a function (beyond things like needing it for school and stuff) to teach people about ourselves and possibly to help us meet similar people. But when we start worrying about we fit an abstract word or not, or deliberately trying to make others worry about the same (there’s some in the autistic community who love to hate anyone who doesn’t fit their exact definition of autism — screw them) it’s us serving the word rather than the word serving us. And that doesn’t even make sense.

And if my typing style seems a little hyper it’s because I’m passing time in the bathroom, have a lot of back pain from sitting up this long (and am sick besides, hence the antibiotics, hence all the time in the bathroom), and am typing this on sheer momentum.

Nah, your typing style is fine. You write really well.

What you said about the experts only seeing autism from the outside and just generalizing from that really makes sense. And they only get to see autistic people in very specific contexts too. Like I remember my sister-in-law telling me how my autistic nephew really doesn’t get attached to people, which I found really bizarre because he attached to me like a barnacle. Autistic people are like anybody else in that they have some people they feel more comfortable around or less comfortable around, and I really doubt “autism experts” are usually in the group that they’re more comfortable around. So they’re probably not seeing autistic people when they’re most themselves, either.

I suspect I don’t really know how I look to other people either. My best guess is that I must look “normal enough,” since I can hold down a job. So I doubt I look especially autistic, at least to the untrained eye, but I do wonder if I come off as being a very different kind of person than I really am. Unfriendlier, maybe.

I think my biggest worry about misdiagnosis is simply misunderstanding myself and thinking my problems are worse than they really are. I was always told that I was making mountains out of molehills so that’s probably where this comes from. Also, I have this major fear that if I’m not autistic that by posting things in autism communities, I’m really misrepresenting myself and possibly even confusing actually autistic people.

I really wish I knew more autistic people in real life. I think that might help with some of this stuff.

Actually that “barnacle” effect is more of a litmus test than you’d expect. Autistic kids often find autistic adults familiar, reassuring, and easier to understand than they understand nonautistic people. When I was in a psych ward, actually right as I was getting diagnosed, there was an autistic boy there who was much younger than me. I was as far as I know the only other autistic person on the ward. And while he liked a lot of people there (to the point where the staff were saying “he can’t possibly be autistic”, because they were ignorant and he spent most of the day (and most of the night if the assholes didn’t tie him to his bed) rocking and moaning a single word to himself, I’m sure they didn’t think I was), when there was trouble, he’d glom onto me or run to my room and try and hide with me. I didn’t even know I was being diagnosed, I just knew I liked the kid and the kid liked me. He was in there for a much worse reason – his mother had given him up and he was waiting for a placement in a more long-term type of institution. I always hope he made it out. Every time they tried to tie him down he ran into my room and tried to hide.

It’s a little more complicated, when it happens, than just any autistic person glomming onto any other. It’s more like… the way I see autism, each of us has our own configuration, and then going off in each direction are clumps of people who are more like them than not, and so forth. That’s easier for me than imagining that it’s just a straight line from mild to severe (especially since what they use to judge those things is pretty superficial – I know a kid with “severe autism and an IQ of 30” who’s going to college earlier than I did as a “gifted” kid, and unlike me he’s totally thriving there, he’s already won awards for his filmmaking abilities). So it’s easier for me to just pick any person and say “there are people similar in this way, and in that way, and so forth”. Especially since the people I’ve met who are similar to me span every single kind of autism diagnosis or official functioning level.

And from what I’ve observed, generally people more similar to each other will “click” better. When you’ve got a kid who’s literally never seen an autistic adult before, though, they might still pick up on commonalities that most autistic people share. I still remember when I discovered adults outside my family (family was just family), I was almost an adult myself. And I suddenly started meeting these people who seemed “really really similar to me in just about every way”. Then as I got to know more and more people, I met some people who were even more similar. And more similar. And by this time I’ve met one person who is so similar that if there are people more similar than that, I’ll be shocked because with us it’s uncanny even by autistic standards.

Something that sometimes but not always happens among people who are similar to varying degrees, is that suddenly it’s easier to communicate with them, and to read their body language, and so forth. I’m not saying it always happens. Or always happens quickly. (Because sometimes it takes awhile to meet anyone that similar, as is the case with me.) But when it does happen, quite often the two people will be able to communicate with each other as well as nonautistic people do with each other. So keep that in mind if it happens to you – for me the first time I saw someone that similar, it looked as if she had “popped out in three dimensions” against a backdrop of “two dimensional” people. Because that’s what it looks like when you can actually read someone’s body language without a fight. And it was like all these layers of meaning pouring into my head that I never saw before. I’ve gotten more used to it now but I count myself fortunate that it’s happened to me even once. I used to fantasize about meeting people where we could make sense out of each other like that, but by the time it happened I had long since given up on the idea as kind of childish or something.

Notes: