|
Excerpt
taken from pages 1-6 of
Born on the Wrong Planet.
My
Journey
The
prefix auto- means "self," so
autism is the condition of being by oneself,
being alone. The name is so appropriate
that two scientists, discovering autism
independently and simultaneously in different
parts of the world, both used the same
term.
Asperger
Syndrome, which I have, is considered
a form of autism. Tourette Syndrome, which
I also have, is characterized by impulse-control
problems and involuntary movements and
vocalizations called tics - mine have
become milder with maturity and been controlled
with medications. Associated with my Tourette's
and Asperger Syndrome are several other
conditions, including obsessive-compulsive
disorder and some symptoms similar to
those of attention-deficit disorder and
attention-deficit hyperactivity disorder.
All of them are challenges I have had
to come to terms with through a struggle
lasting many years.
People
with Asperger Syndrome do not fit into
the society around them. We do not instinctively
pick up clues in body language and voice
tone that tell us what people mean. We
do not automatically know how to make
friends; we have to study it for years.
We are socially inept until we have learned,
sometimes over a lifetime, how to function
in society.
We
are seldom of below-average intelligence,
however. I do not want to perpetuate the
myth that all autistics can accomplish
huge mathematical feats in their heads,
but the fact is that many do have some
startling talent, as do people with Tourette's.
Yet,
one is expected to be ashamed of having
Tourette's, autism or any sort of mental
or emotional disability. I know this because
when I break the rule, openly discussing
my disorders the way I would discuss my
race or my gender, some people become
embarrassed and uncomfortable. Others
admire me, thinking that it must take
immense courage to talk about such things.
But for me, my conditions are not a taboo;
they are part of who I am. If people were
not expected to be ashamed of having mental
conditions, discussing them would be commonplace,
and nobody would find it unusual.
Tourette's
and Asperger Syndrome are more common
in men than in women, so as a woman with
both, I am a member of a tiny minority.
With my disorders piled on top of my gender
and my age, I belong to a group so small
that few people ever think about it.
Many
things are easier for me than for those
with more severe Tourette's or classic
autism. Sometimes, when pleading their
case to the "normal" people
who misunderstand them, I feel as if I
were standing up for the rights of a race
that comprised only a quarter of my heritage.
As a woman with mild disorders, I experience
a little bit of the same discrimination
as a woman with more severe disorders
- just as a multiracial woman experiences
a milder version of the challenges of
being a minority. Knowing the "normal"
world more intimately than many autistics
know it, I may even make a good link between
the two realities.
Other
children feared, mocked and took advantage
of my disabilities throughout grade school,
and on top of that, I was always the one
being punished. This was not for lack
of trying to behave well. To nearly the
best of my ability, I did what I was told.
Autistic
children usually have no desire to be
dishonest, and I was no exception. I didn't
skip class, draw on the walls, cheat on
assignments, or break even the minor rules
I found stupid, like the no-hats-no-jackets
policy, or the rule in high school that
underclassmen couldn't go off campus during
school hours. Once I was even unwilling
to glance over at a classmate's book to
see what page we were on, because we had
been told not to look at each other's
work.
Ironically,
I got suspended more often than most of
my peers, because I had no knowledge of
social rules and ended up offending and
frightening people when trying to get
a laugh out of them. I couldn't manage
the nuances that made the difference between
a joke and a threat or insult. The field
of language was my strong suit. The field
of social interaction was not. I had few
friends, and most of my interpersonal
contacts involved people trying to get
me to do something stupid so they could
laugh at me. I craved attention so much
that, even when not egged on, I did whatever
ridiculous things came into my head, just
so people would laugh and remind me that
I existed. Too often, though, it went
beyond laughter, and I was maliciously
teased.
Also,
the main features of my Tourette's were
severe impulsive behavior and a volatile
temper. As a result, I did things like
walking up and kissing classmates on the
neck without warning. I could get into
physical fights over the species of an
insect.
When
adults asked why I'd done something, I
could never explain it. It had just happened.
Even though I avoided deliberate transgressions
that, for other students, were a part
of everyday life, I often broke rules
by accident or in "the heat of the
moment." As a result, the principal's
office became one of the most familiar
places in school for me. To this day,
I can remember a certain poster from the
office of the third school I went to;
I could almost draw it right now, and
I hate every line of it.
I
learned to speak, read and write very
early, and have continued to develop those
abilities. Some people admired me for
being so successful with words despite
my Asperger Syndrome and Tourette's. Yet,
my success was not despite my disorders,
but because of them. Some autistic
people are mathematical prodigies; I was
a linguistic prodigy. Whatever my neurological
conditions had taken from me, they had
given me this.
My
internal life was extremely active. I
put on little puppet shows for myself
with my hands, pretending they were ducks
and swans and dogs and monsters that acted
out complicated dramas. I made up stories
and told them to myself while wandering
around the playground. I learned not to
care about the strange looks I got from
other kids. During some stages of my childhood,
I even took a kind of weird pleasure from
being an outcast, being able to scare
people away just by looking at them.
I
knew that human society places a great
value on physical appearance. My first
mistake was thinking that I could win
popularity by beauty alone. My second
was expecting that I could manage the
complicated codes of what beauty was.
I
wore tight, low-necked shirts, but didn't
know I was supposed to wear anything under
them for modesty. I wore lots of makeup
- too much, and the wrong colors. I had
no idea what went with what. And even
when I did manage to look beautiful, it
didn't make up for being a weirdo. I had
the same desire for love and popularity
that all girls had, but it took me a long
time to learn to fulfill it in a healthy
way.
Throughout
my childhood, teens and young adulthood,
I struggled to fit in. I asked questions
of my parents, teachers and friends, and
told them all the difficulties I had in
understanding my classmates. I read books
about normal people and books about autistic
people. I watched social interaction,
trying to figure out how it worked.
Most
of all, I wrote. I crystallized my thoughts
about the world by keeping a diary; I
worked to comprehend humans by exploring
and describing them in the written word;
I invented and wrote about imaginary cultures
to help me understand my own.
|