Did you know that Tim Burton has Asperger's? I didn't. Did you know my daughter has Asperger's? I didn't, not for sure. I suspected it, starting when she was about fifteen, but I was so horrified by the possibility that I put quite the negative spin on it. Stop being that way! I would demand. You don't want have Asperger's, do you? You do NOT want to have Asperger's. Stop acting like you do.
(Some of you may hate me now. Go right ahead. I deserve it. But I am not the only mother to react this way to her suspicions, I'll bet you dimes to the dollar. I am just one of the few honest enough to admit it.)
When my daughter was sixteen, I paid cash to visit a child psychiatrist to consult about whether I should seek a diagnosis. The doctor listened patiently, asked very pointed and appropriate questions, and then offered me a solution. She rightfully pointed out that seeking a diagnosis would only prove beneficial if my child wound up in need of special assistance to succeed in life. If that were the case, then and only then would it be the best course of action. She gave me a checklist of teenage social developmental milestones, and a timetable of six months. If all, or even most, of these criteria were met, I should just relax. If less than half were met, I should seek an appointment for my daughter to be evaluated.
Six months came and all the blocks were checked off the list. I breathed a sigh of relief. My daughter did not have Asperger's, I reassured myself. It had all just been a phase. *whew*
Wrong.
My daughter, being the hard-working, beautiful-hearted, amazingly talented person that she is, just worked extremely hard to compensate for her neurologically atypical wiring. I am in awe of her accomplishment. Here, in someone else's words, are what it took for her to pull this off:
http://archive.autistics.org/library/more-autistic.html#analogy
(Some of you may hate me now. Go right ahead. I deserve it. But I am not the only mother to react this way to her suspicions, I'll bet you dimes to the dollar. I am just one of the few honest enough to admit it.)
When my daughter was sixteen, I paid cash to visit a child psychiatrist to consult about whether I should seek a diagnosis. The doctor listened patiently, asked very pointed and appropriate questions, and then offered me a solution. She rightfully pointed out that seeking a diagnosis would only prove beneficial if my child wound up in need of special assistance to succeed in life. If that were the case, then and only then would it be the best course of action. She gave me a checklist of teenage social developmental milestones, and a timetable of six months. If all, or even most, of these criteria were met, I should just relax. If less than half were met, I should seek an appointment for my daughter to be evaluated.
Six months came and all the blocks were checked off the list. I breathed a sigh of relief. My daughter did not have Asperger's, I reassured myself. It had all just been a phase. *whew*
Wrong.
My daughter, being the hard-working, beautiful-hearted, amazingly talented person that she is, just worked extremely hard to compensate for her neurologically atypical wiring. I am in awe of her accomplishment. Here, in someone else's words, are what it took for her to pull this off:
http://archive.autistics.org/library/more-autistic.html#analogy
The following is only an analogy. The
real world is much more complicated than this, and this is not true for all
autistics.
Pretend there is a way of measuring doing a
certain skill, so that there is a "resting performance level" in that
skill and an "active performance level" in that skill. The scale is
from 0 to 10.
9 or 10 is the way people are expected to perform
in that skill.
Most NTs have a resting ability of 7 to 10 in a
skill they have either learned or been born with.
Many autistics have a resting ability of 0 to 3.
In order for an NT to do that thing, it takes
either very little effort or no effort. If their resting level in that skill is
10, then they don't even realize that they are using that
skill.
In order for an autistic to do that thing, it
takes considerably more effort. It takes the degree of effort that it takes NTs
to do things that they usually
have a resting ability of 0 to 3 in, such as multiplying large numbers in their
head.
But when an autistic gets practice, they get used
to pushing themselves. They may push themselves so that in public they
are functioning at between 7 and 10 in that skill at all times.
The NTs around them, taking for granted that 7 is
the lower limit, don't even recognize that the person maybe had to climb all
the way up from 0 to get to 7. They start taking for granted the autistic
person's ability in that area, because it is within the limits of the only
range of abilities they even know. The
autistic person's effort gets unintentionally ignored, and NTs wonder what's
going on when the autistic person gets exhausted and overloaded from doing
"normal" things, or suddenly stops being able to do something they
were "good at" before.
One example of a thing that NTs are usually at a
10 at is recognizing the objects in front of them. Unless they have had brain
damage (at which point they're not technically NT anymore), they usually can
easily and effortlessly perceive and differentiate between familiar objects and
name them.
Some autistic people, in order to do that, have
to do things like decide to look at something, see a garble of shapes, start
differentiating individual shapes, focus in on one of the shapes, figure out
that the shape is a Thing, figure out what the Thing is, and figure out what
the Thing does. And that's all just to get to the bare minimum of what NTs do
automatically, and it's leaving out things like differentiating one sense from
another and doing this in a non-passive setting.
Doing that kind of thing all day with all your
senses can be very tiring and overloading. That does not mean doing all the
things NTs do to function all
day, mind you, it just means understanding our surroundings. That's the background that a
lot of autistic people have to work up to to then do the "ordinary"
things like go to school, obey teachers, do schoolwork, housework, and stuff.
Some autistic people can get extraordinarily good
at holding this together to the point where it becomes pseudo-automatic
(doesn't require conscious effort, but takes a huge energy drain), or can
devise ways of dealing with the world that don't involve having to perceive all
of it all the time, but there are usually things going on that an autistic
person is doing consciously that are a lot more basic than what you're used to
thinking about. It's not necessarily always in the area of sensory perception;
that's just one of many things that can be like that for us.
It doesn't often get recognized that even if an
autistic person gets up to a metaphorical level of 7 to 10 in a skill, and
performs that skill in that manner on a regular basis, in all likelihood they
are still performing all of the complex maneuvering consciously. We are less
likely than NTs to just get used to things, and even when it becomes
pseudo-automatic the drain on our resources does not necessarily go away.
The natural inclination of many NTs when they see
an autistic person at a 7 to 10 in that skill is to believe that that skill has
been "mastered" and is now fully automatic, requiring very little
effort. They then push the autistic person to pile more skills on top of that
skill, into a really big stack. The problem is that the more skills get added
that the person then has to monitor and deal with, the more likely that the
lower-level skills will falter and bring the whole metaphorical "house of
cards" down. That can look like overload, shutdown, or meltdown when that
happens.
When it happens for a long time and some of the
skills do not get built back up again, then it often gets called
"regression", which is not a word I'm fond of. I suspect that's one reason
that autistic people sometimes shut down on skills we've supposedly mastered a
long time ago when learning new things. Skill mastery simply doesn't work the
same for us.
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