[misc.handicap] Autism. communication, and empathy

GOLEM%UKANVM.BITNET@cunyvm.cuny.edu (Jim Sinclair) (03/28/91)

Index Number: 14500

    I  keep  reading that autistic people lack  empathy  and  are
unable  to take others' perspectives.  I think it might  be  more
fair  to  say that autistic people lack  certain  expressive  and
receptive  communication  skills, possibly including  some  basic
instincts  that  make communication a natural  process  for  most
people, and that this, combined with any cognitive or  perceptual
differences,  means  that autistic people do  not  SHARE  others'
perceptions.  "Empathy" is a nebulous term that is often used  to
mean  projection  of  one's  own  feelings  onto  others;  it  is
therefore  much easier to "empathize" with (i.e.,  to  understand
the feelings of) someone whose ways of experiencing the world are
similar to one's own than to understand someone whose perceptions
are  very  different.   But  if  empathy  means  being  able   to
understand  a perspective that is DIFFERENT from one's own,  then
it  is  not  possible to determine how much  empathy  is  present
between persons without first having an adequate understanding of
each person's perspective and of how different those perspectives
are  from  each  other.  (This would  require  an  observer  with
PERFECT empathy for all parties!)

    When I am interacting with someone, that person's perspective
is  as foreign to me as mine is to the other person. But while  I
am  aware of this difference and can make deliberate  efforts  to
figure  out  how  someone else is  experiencing  a  situation,  I
generally find that other people do not notice the difference  in
perspectives   and   simply  ASSUME  that  they   understand   my
experience.   When people make assumptions about  my  perspective
without  taking  the  trouble to find out such things  as  how  I
receive and process information or what my motives and priorities
are,  those  assumptions are almost certain to be  wrong.   Since
people usually don't state their assumptions explicitly so I  can
tell  what they're thinking, and since I don't have a very  large
vocabulary of feeling-words, it is very difficult for me to  find
out  what  the assumptions are and to find a way  to  communicate
discrepancies  between  what  is  being assumed  and  what  I  am
actually  experiencing.  While different people vary in how  much
they examine their assumptions about my experience and take  care
to communicate their own perspectives in terms I can  understand,
I  have  never interacted with ANYONE who was  as  careful  about
these  things as I am.  The extent to which communication  occurs
in  the  course  of  my  interactions  seems  to  depend  on  how
effectively I am able to identify discrepancies in  understanding
and  to "translate" both my own and the other person's  terms  to
make sure we're both focusing on the same thing at the same time.

    I  don't  mind  that  I  have  to  do  this  work.   I  enjoy
intellectual  challenge,  I am interested in learning  about  how
people's  minds work, and the sense of achievement when I  manage
to   connect  meaningfully  is  exhilarating.   I   don't   think
communication  would be nearly as interesting and exciting if  it
were  something  that just came naturally to me.  But I  DO  mind
when  in spite of so much effort I still miss cues,  and  someone
who has much better inherent communication ability than I do  but
who  has not even taken a close enough look at my perspective  to
notice  the  enormity of the chasm between us tells  me  that  my 
failure to understand is  because *I* lack empathy.   If I notice "
that I do not understand people and I devote all this energy  and
effort to figuring them out, do I have more or less empathy  than
people  who  not only do not understand me, but who do  not  even
notice that they do not understand me?

    I  could  write  pages  of suggestions  for  relating  to  an
autistic  person,  but the most important theme  is:  DON'T  TAKE
ANYTHING  FOR  GRANTED.   Don't  assume  you  can  interpret  the
person's behavior by comparing it with your own or other people's
behavior; you have to learn to recognize that particular person's
unique  signals.   Don't  assume the person  can  interpret  your
behavior.   (Don't  even  assume the  person  can  recognize  you
without  an  introduction; I was 18 years old  before  I  started
learning to recognize people when I saw them outside their  usual
contexts.)   Don't  make  any  assumptions  about  the   person's
interests,  desires, and priorities, and don't expect the  person
to be able to guess what yours are.  If you want to know how  the
person feels, what the person wants, or what any behavior  means,
ASK.   If  you  want  the person  to  understand  your  feelings,
desires,  or  behavior,  EXPLAIN.  The people  I'm  drawn  to  as
friends  tend  to  be both emotionally  expressive  and  verbally
articulate.   They FEEL intensely, they EXPRESS  their  feelings,
and  they  TALK about what they're expressing and why.  This  not
only  helps  me understand how they're  experiencing  a  specific
situation,  it  also  helps  me  learn  to  recognize  and  label
feelings.

    It's  also important to BE SPECIFIC.  A vague  question  like
"How  do you feel?" may be incomprehensible to a person  who  has
trouble attaching words to feelings and who doesn't have a  frame
of  reference  for  the question.  "Do you  feel  ________  about
_______  situation?"  may be easier to answer.   Be  prepared  to
define terms if the person doesn't seem to understand the initial
question.   If  the  person answers your  question  with  another
question,  consider  the possibility that this is a  request  for
clarification.  I often do this when I'm not sure of the  context
or  the  underlying assumptions of a question  I've  been  asked. "
Sometimes I repeat the same question back to the questioner, so I
can  find  out  what type of answer is called for  and  frame  my
answer in a similar structure.

    Be  specific  in expressing your own desires as  well  as  in
asking about the autistic person's.  When someone says  something
vague  like "You're not paying attention to my feelings," I  feel
inadequate, and I'm also frustrated because I don't know what  to
do  about  it.   (If,  as  is often the  case,  I  AM  trying  to
understand the person's feelings, but I either don't know how  to
interpret  what I see or don't know how to respond to it, then  I
feel  unfairly picked on as well.)  If instead the  person  says,
"These are some signals I use to express my feelings, and this is
what they mean, and this is how I'd like you to respond when  you
notice  them," this gives me information I can use to improve  my
understanding and responsiveness.

    Establishing communication and understanding between any  two "
people  with  different  experiences  and  perspectives  involves
developing  a common language.  An autistic  person's  experience
and  vocabulary (verbal and non-verbal) may be  so  idiosyncratic
that  it  takes a great deal of effort on both sides  to  develop
this common language.  Instead of attributing all difficulties in
communication  to the autistic person's inability to  speak  your
language,  why  not embark on the adventure of working  WITH  the
autistic  person to learn to understand each  other's  languages?
People  who  have taken on this challenge with me have  not  only
helped  me to learn more social skills, they have learned  a  lot
about themselves as well!

(First published in "The MAAP," Spring 1989)