From: debg@uxa.cso.uiuc.edu (ginsberg deborah)
Subject: hello again
Organization: University of Illinois at Urbana
Date: Thu, 15 Oct 1992 01:46:06 GMT



I posted about my sister Dana some time ago.  I'm sorry for being tardy
in replying to the responses I got.
 
First, some one (I forget who) asked how my family dealt w/ sibling problems
when one of them is autistic.
When I was much younger, and my sister and I were in the same schools (which
we were unless age differences separted us) I was often expected to account 
for Dana's strange behaivor.  How do you keep her from crying?  Why did
she freak out at x?  Why is she so upset at y?  Naturally I didn't know, but
kids and teachers alike continued to ask me.  Note:  one thing that was
different here than will be in many situations is my parents, for whatever
reason, did nothing about identifying or treating my sister's problem from
when she was 3 until she was a teen ager (when a bad summer at North Field
-Mount Hermon Summer School led her to be anorexic).  Thus many of her teachers
didn't know she had a real problem, and even they would pick on her unnec
essarily.  Of course, warning teachers could have a positive or negative
effect, in either they know what they are dealing w/, or are afraid.  In any
case, I'm off topic.
At home, our relationship wasn't quite like other siblings.  There were some
normal sibling rivalry.  But Dana also tends to react to many situations
w/ anger or fear.  She also isn't very empathic - one gets very ittle 
understanding or cooperation.  Though
often it seems otherwise, especially when she is being uncoperatve, my parents
insist she worships me.  I take this w/ a grain or two of salt, but I wish 
they wouldn't do this.  It puts an extra burden on me.  I do try to look
after Dana.  She doesn't have many friends she is social w/ outside of school,
so when we a both home I try to take her along on activities or visits I know
she'll like.  I've learned to identfy which visits are good to have her on
and which are not.  These are always on Dana's own terms, so I've learned
not to take her on those where her terms won't mesh w/ mine or the general
group terms.  Dana has gotten better lately at identifying those activities
which she should best stay away from (eg, those that will keep us out late,
she gets more self centered when she is tired.)  My experience in this
extends back through Highschool, when my parents insisted that I take Dana
along as often as they could (she has almost always had trouble making
friends she could socialize w/).  I'm not sure if this was a good policy
or not.  I certainly resented it at the time.  But the benefits it gave to
Dana, her social skills, and her self esteem probably were much greater than
my anger.
OK, I think I've given a too bad impression here.  When Dana isn't in
one of her more stubborn moods, we actually get along pretty well.  I
don't realate to her like I would my friends,  and often there isn't much
to discuss.  But she likes to play games and see movies, so those are things
we can do together.


Writing:
I've seen alot on writing on this board and elsewhere as being a big help
To add to anyone's data on the subject, Dana is actually a reletively decent
writer, especially creative writer when she does it (which isn't often).  She
won a prize for a story once.  I've suggested using wrting to help w/ problems
but I'm not sure what she's done about this.
One thing I'll add:  Dana right now only reads "teen" literature.  She does
read a lot, but maybe it would help her to read smething a little older.  Any
suggestions?  
Dana isn't on the NET.  I've been thinking of putting her on, but she
isn't much of a computer person.

Warning:
I've seen a lot of postings on people who think they might be autisic.  Many
have a really genuine ring about them, but some I've seen (not very lately)
have had a sort of romantic ring about them.  Like it's something they would
like to be labled w/.  Naturally, alot of the postings here are about the
positive aspects of being autistic:  writing, interesting perspectives.  Or
postive emphasises on things like being very private not being able to 
communicate easily.  But Autism is a problem.
In my sister's case it expands greatly beyond her inability to communicate
her emotions well (or understand those of others.)  It means that she can 
throw a temper tantrum because she doesn't get cable at school.  It  means
that she REFUSES to give up her Natilus sessions to participate in a family
activity.  It means she easily alienates many of the people around her
through her self-centered ness and having EVERYTHING her own way.  It means
that she can extrapolate potential problems beyond the point of being
ridiculous (eg - she wouldn't drive her car at night last time I was home
b/c she was afraid
she'd burn out the headlights and then she wouldn't be able to go to her
exersise classes which are at nightand
 she needs a car to get to.  Dana has a 1989 1/2 
Fort Escort which isn't about to fail any time soon, but Dana is terribly
afraid it will, and treats the car like a fragile egg.  Let me rephrase
that, my parents have a Ford that Dana is alowed to use, but so am I, which
also causes problems.)  
This is beyond cute and into massive migrane.


Progress:
Despite all this, Dana has actually been doing pretty well lately, last I 
heard.  She's managed to make friends out of those freshmen that were annoy
ing her w/ loud music (they invited her to come dance w/ her, always a 
good disarming tactic.)  She is enjoying her classes.  She even handled
a speeding ticket w/ good grace.  

James at my node, I will anwer your letter specifically eventually.  I'm sorry
I haven't gotten to it ( or a number of other letters ) yet.

Sorry for my bad typing.  I haven't gotten totally used to EMACS yet and
there is no easy way to delete mistakes.


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