Cade wrote:
Fortunately, 1) AS cases that severe are rare, and 2) by the time they hit puberty, their AS is less severe.
Forgot to address that part.
As far as level of difficulty with everyday tasks, there is a significant minority (I've heard anywhere from 15-25%) of autistic people who
lose (or appear to lose) certain abilities during puberty.
(I say "or appear to lose" because sometimes what you're actually seeing is someone either
failing to gain certain expected abilities but not actually losing any, someone
having appeared as if they had certain abilities and now not appearing so, and someone
responding to increased demands on them that are expected because they are getting older.)
For instance, my developmental pattern (by NT standards of what autistic people are like) went something like this:
* Unusual from birth in some respects (response to environment, stimming, etc).
* Gained some abilities such as a little bit of speech (or something resembling it, I have no idea if it was communicative because I can't remember).
* Lost some of those abilities (including speech) at an early age.
* Regained some of those abilities (or things looking like them -- at this point I know that some of the speech I regained was not communicative because I do remember it).
* At school age, was able to speak (with varying degrees of communicativeness, i.e. a lot of it was non-communicative echolalia and my receptive language tested far below receptive) and do pretty advanced academics, while still stimming (sometimes could get into private before doing it, sometimes not), having immense social problems, communication problems, self-care problems, meltdowns, bad responses to routine changes, etc. Put a lot of effort into generating language and symbols and academics for people to the point of blocking out a lot of other things (and generating a lot of near-physical pain for myself, since this was not a natural way of operating for me). Still to my knowledge looked like a really weird kid, but a weird bright kid.
* Right before puberty, gained a brief ability to control meltdowns and a few other things and blend in a little (this lasted less than a year).
* Right at puberty, experienced a massive shift in abilities, or a resetting to my actual abilities, or something, probably a combination of a lot of things. The ability to maintain the symbolic/academic stuff started breaking down right and left. Speech started cutting out more and more regularly, and when it was there it was less and less what I meant to say (it had always been a mishmash). I now was so consistently overloaded and confused that I could not help stimming in public most of the time (I had been able to hide some of the time before, I was also being afforded less and less time alone which didn't help). At the same time, my actual strengths in terms of pattern-sensing and other things like that were coming into more prominence, and I was writing better (I had always been bad at writing before), and starting to understand certain aspects of the world better. I also experienced a widening of the gap between intentional and automatic movements, and began freezing in place more and more often. (I did a lot of complicated crap to try to cover what was happening from both myself and other people, but that's another story.)
* By my twenties, abilities had resolved to roughly what they are now, which I've described elsewhere. Which includes having gained some I didn't have and lost some I did have, so you can't oversimplify this to "just gaining" or "just losing".
But because of this I've done a lot of research into what actually happens to autistic people during puberty. It turns out that lives like mine actually used to be one of the cliches of autism. Sean Barron's mother was told something like, "You shouldn't bother teaching your son, because even if you do manage to teach him things, he'll lose them all during puberty." Which turned out to be very wrong for him, but that's another story. It was known that some of us just don't "hold onto" certain kinds of knowledge and abilities particularly well even if we temporarily manage them. There is more and more research about movement problems that either crop up during puberty or become more intense during puberty, although I think a lot of the "movement problems" are also perceptual and the researchers are missing the mark on some of what they're looking at as purely motor. That can happen to anyone with any kind of autism diagnosis (AS, autism, etc) or academic ability, and it can happen anywhere from a little to a lot, temporarily or permanently, stable or fluctuating after time, etc. The recent article someone posted listed 15% which is higher than I expected, although I
have known a whole lot of people this happened to (I found out about it from other people it had happened to). I know people who were so typical in their speech development (unlike me) as to be officially diagnosable with Asperger's as children, who cannot speak and have a great deal of difficulty moving around as adults because of this stuff. I've also seen a 25% figure at some point for "regression" (not a word I'm fond of to describe this because it oversimplifies just like functioning level does) at puberty among autistic people.
So autistic people can (again from an NT perspective) gain abilities at puberty, lose abilities at puberty, both, or neither. There's no single developmental trajectory for us at puberty.
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"In my world it's a place of patterns and feel. In my world it's a haven for what is real. It's my world, nobody can steal it, but people like me, we live in the shadows." -Donna Williams
21 May 2007, 1:30 am
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