(I used to be joking when I said that and now I'm not, which is an exciting change.)
of course more of an effort needs to be made to include girls with ASD in studies at an equal rate to boys and study differences in presentation and even do all-girls studies
however, I think this is not just because we need to study what ASD is like in girls, but because we need to question commonly accepted values about how to "treat" children with ASD.
the focus is generally not just on communication and other objective skills, but on normalization of behavior, but not a ton of analysis is done on why for example preventing neologisms, preventing stimming, and training eye contact are supposed to be inherently good. But when we think about the fact that (anecdotal but very consistent evidence from professionals, parents, and people with ASD) women and girls with ASD are much more likely to pass for non-disabled, or at least be less apparently/stereotypically ASD than their male counterparts...we actually already have a bunch of passing/semi-passing ASD people to study. We can actually look at these people and see what their quality of life is.
Again from anecdotal but consistent evidence, women with ASD are more likely than men with ASD to have severe anxiety problems. I think at least one study showed that we are less likely to be married. And when you actually think about this stuff logically and not from the standard "non-disabled people>>>>everyone else forever" perspective, it makes perfect sense. Behavior is not who you really are. Focusing super hard on behaving like someone else can cause anxiety and exhaustion. Being impaired and having other people not notice that/make allowances for it, because you pass so well, can also suck. If you are behaving like someone else, you may number one fall into the uncanny valley, and number two be unable to feel things very deeply/experience real connection.
I mean, to me this is common sense and people should already be questioning "non-disabled people>>>>everyone else forever," but if we really need a study to show that forced normalization in every area of life is really NOT SMART, studying women would be an easy way to do it.
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I totally agree with everything in here.
ReplyDeleteI don't so much have a problem with being unable to experience emotions deeply but always having to hide just how deeply I do experience them since in my case I often feel very strongly about things that other people don't seem to think is such a big deal.
Also, I suspect I'm not the only female with possible ASD/NLD who does the mirroring thing, which has its own very special set of problems.
oh, yeah. I think about your mirroring stuff a lot--is that creepy? it just seems like a perfect encapsulation of the problems inherent in assuming that people who seem normal have a better quality of life. (that is, not that YOU are doing anything wrong because you do what you have to do, but that other people are doing something wrong when they think about a situation like yours and say, "oh, that person is high-functioning/better because their relationships look normal to me").
ReplyDeleteNah, not creepy. Mirroring is a huge part of my passing experience, so I'm glad someone can relate to it.
ReplyDeleteI think the quality of life issue is ambiguous. Certainly passing has its problems. On the other hand, I haven't been institutionalized or gotten in trouble with the law for my inability to pass. Not that I think people unable to pass should be either, although if they're doing things that are dangerous to themselves or others then that has to be dealt with, but I doubt that institutionalization or prison is really the best or most humane way.
But I guess what I'm trying to say is that I do think I have a certain freedom in my life because I can look relatively 'normal' that I might not otherwise have.
Passing is really stupid though. I can see not being allowed to talk to myself at work, since I'm in an office and people are trying to concentrate. But a cop once came over to talk to my parents and me because I was skating at the rink and drawing pictures in the air, and he wanted to me to stop. And that's just idiotic. Drawing pictures in the air shouldn't be a big deal. Twirling your hair shouldn't be a big deal. I find it soothing. I'd like to see greater tolerance of eccentricity in general.