On living with Asperger's

[Kragen Sitaker]

Chris Johnson posted some text at the following URL:
http://slashdot.org/comments.pl?sid=99/09/13/1223215&threshold=1&commentsort=3&mode=thread&cid=196

I have included his post. (I don't know if I'm actually autistic;
certainly borderline, but I don't know which side of the borderline.
Chris sounds like he's a little more seriously afflicted than I am --
but he is definitely a kindred spirit.)

I've reformatted the text.

I don't mind saying I'm 'legally autistic'- as in 'on disability w.
	Asperger's Syndrome'. I understand even making such an
	admission exposes me to frantic hateful attacks from Randites
	going 'there's nothing the matter with you! just try harder you
	lazy bastard!', but I thought it was a useful context to say
	some things I thought needed saying.

Asperger's is incurable. It's like trying to cure being six foot tall,
	or trying to cure bipedal locomotion. What Asperger's really is
	about to me (and I make use of some resources I have to learn
	more about this) is "what rules do I need to live by in order
	to survive?". Neglecting this or trying to deny it with
	stubborn willpower damn near killed me- at one point I got sent
	to an emergency room with internal bleeding from ulcers
	(typically, I sort of ignored the pain of it, having decided
	that 'willpower' and my goals were more important).

One of my needs is for the flow of my attention to flow naturally. I
	cannot handle derailment- even if I force myself to permit it,
	I take an absurd amount of damage from it in stress, and get
	driven farther into autistic defenses. For instance, I've
	managed to work out ways to do computer repair work and
	maintain it without burning out or flaking out. One of these
	ways is this: my boss is totally aware of who I am and where
	I'm coming from, and from day one I have arranged that I do not
	answer the telephone. (heh- I'm picturing a lot of heads
	nodding out there in slashdotland ;) ) Seems awfully trivial-
	but when the dislocation of changing your train of thought and
	answering the phone really _hurts_ and undercuts the little
	oasis of stability you've built for yourself, sometimes you
	have to ask for what you need. I did. I also show up whenever I
	like and stay as late as I want, because I cannot control when
	I'm going to be able to sleep, so I can't keep regular hours
	either- that's another one I learned through rough experience.
	(reminds me of childhood and routinely getting 2 hours sleep
	before school because my head wouldn't quit processing).
	Again, I got this through being honest and also willing to
	_stay_ late if needed- I go into work with the understanding
	that it has permission to switch my 'track' over to computer
	repair for however many hours it takes. My boss considers it
	his job to tell me and the other (equally obsessive) computer
	tech to go _home_ when we're threatening to spend 12 hours on
	the same intractable problem!

It's bad to behave like some types of geekiness are diseases to be
	stamped out- but it's worse to behave like these differences,
	these different needs, don't exist. I don't know how many other
	autistic geeks (include 'Asperger.h') are out there- I've seen
	a couple touching posts from people who felt really crappy
	about themselves- and it's not OK for me to shut up about it
	anymore. I WILL be heard from- as much as I can communicate,
	and not a bit more ;) because autism/asperger's may not be a
	'disease' in the sense of 'fix meeee!' but by GOD it's
	different, and ignoring that kills people slowly.

Those of us who are autistic geeks generally cannot go on grand
	crusades to define and protect our image, establish our
	identity as a worthy thing, prove our value. We typically have
	a hell of a job keeping our own boats steady and no attention
	to spare for PR.  Even when a Slashdot article shines a beam of
	light on us, the comments are mostly people arguing ABOUT us,
	arguing we don't exist or don't count OR arguing that we are
	totally normal, really, and must be treated as regular guys!

Well- we're out there, we are the worst stereotypes and the fondest
	rationalizations all rolled into one, and we certainly are not
	going away. (That would be change- ew! Find another line of
	work? yuck!) So people had better get used to the idea. It's
	not new- ever read 'The Hacker FAQ'? It's practically a
	tutorial on 'how to give an autistic person a work environment
	that is nurturing and let them perform optimally'. The fact is,
	for many of us this is NECESSARY. We aren't as adaptable as
	your regular Joe- to really be kick-ass productive members of
	society we _need_ our quirks to be respected and understood,
	otherwise it's like having a track star run a race with both
	hands tied together behind his back.  ("You run with your legs,
	right? Shouldn't matter."). To explore that simile a bit, in
	running arms are used for _balance_ and if you did that to a
	track star they'd be totally uncomfortable and slowed down,
	running very unnaturally. It's the same thing for autistic
	people working and being expected to maintain regular-folks
	social interactions- the balance is off, it's exhausting and
	unproductive, and as inappropriate as tying a track star's
	hands behind his back.

We don't need cures, we don't need help faking normal societal
	attitudes- we need the proper context. It's not so much to ask.
	There are pluses and minuses to this- the most important point
	is, this is not an option.  Treat us like Joe Sixpack, and you
	lose, we lose, everybody loses out on the potential harmony
	that is there for the taking, for anyone willing to make a bit
	of an effort to accept what they don't understand.

-- 
<kragen@pobox.com>       Kragen Sitaker     <http://www.pobox.com/~kragen/>
Mon Sep 13 1999
56 days until the Internet stock bubble bursts on Monday, 1999-11-08.
<URL:http://www.pobox.com/~kragen/bubble.html>