Imagine you are 11 years old in school and see
your classmates daily. Every time you attempt conversation you end up being
scorned and ridiculed. Your interests are different. You love medieval
knights. Your classmates love cars, TV shows and punk rock. You happily talk
about medieval knights to the students and teachers. Your classmates
perceive you as “weird” and your teachers call you “little professor” for
your great knowledge on the subject. No matter what you do you cannot make
any friends even if you wanted to. You prefer being by yourself.
You take things literally, not understanding
what others try to say by such expressions as “don’t have a cow” and “don’t
cry over spilled milk”. In class you get rejected for telling the teacher
about any uncomforts you have around other students, never understanding the
unwritten code of silence: Do not snitch on your fellow classmates.
You have trouble with emotions: none come out
right. You’re happy and laugh when everyone else cries. You see other people
laughing and crying but don’t know the context. You can’t understand subtle
facial cues because you misread their face. You get confused and people get
very angry for not being able to get you are clearly not wanted. So you
struggle trying to read their expressions.
You love routines and do things the same way
every day. You take the same route to school, brushing your teeth, washing
and eating your food. Any slight change in this results in you reacting and
expressing. You prefer the familiar as opposed to the unfamiliar.
An ambulance siren passes by outside. It’s 10
times louder to you than the rest of your classmates. Other sounds startle
and scare you. You have a hard time talking on the phone in a noisy
environment: due to background noise you are unable to make out what the
person on the other end of the phone is saying. You don’t like to be touched
by other people and will flinch, stiffen and pull away from those who do
This is what it’s like to have Asperger
Syndrome, a form of autism, a neurological disorder affecting thousands of
individuals worldwide including local Asian student Terry Siu. Autism is a
word heard more these days due to media coverage. It’s the latest “buzz”
word for a child not fitting in and not behaving properly. If a child is
socially withdrawn, bites, rocks, spins, talks to himself, kicks, screams
and throws tantrums he is diagnosed autistic. Autism has many labels with a
wide spectrum including High Functioning (HFA), Low Functioning, PDD-NOS
(Pervasive Development Disorder Not Otherwise specified), mildly autistic,
Asperger Syndrome, Kanner Syndrome, and autistic tendencies.
Many people believe autistic children never
lead productive lives. They spend it in institutions, not learning how to
take care of themselves, unable to experience social situations and
etiquette, never fully toilet trained and doomed to being single. People
give up working with autistics. The media also enforces this belief. Their
inaccurate portrayal of autism makes parents feel hopeless and desperate.
But most do not huddle in corners rocking back
and forth while shutting out the entire world. Not all are anti-social. Some
have long-term friendships, even holding down a good paying job and becoming
productive members of society. Many even marry and have children of their
Autistics are everywhere and you cannot tell
who they are by looking at them. Tony Attwood’s Asperger Syndrome describes
the diagnostic criteria for Asperger Syndrome. They include: social
impairment, narrow interest, repetitive routines, speech and language
peculiarities, non-verbal communication problems, motor clumsiness,
solitary, impaired social interaction, impaired nonverbal communication, and
odd speech. Each autistic reacts differently to their environment and may
not display all diagnostic criteria. Some may be more impaired than others
finding it hard to work and have a family of their own. Others are able to
finish high school, get a University degree and find successful employment.
Just like the rest of the world people with Asperger Syndrome do desire to
marry and raise their own family. Yet at the same time both teachers and
students alike ridicule and scorn such individuals because they are
different from everybody else, not understanding their unique qualities.
Very few teachers understand them enough to become their mentors. Below are
anecdotes of three diverse autistic individuals with their own flavor to
Terry Siu is a grade 12 student with Asperger
Syndrome and leads a productive life outside of school. His interests
include the martial arts specializing in Karate, video games, fantasy books
and movies. He has a gift for poetry. Terry finds it hard to make friends
yet starting in grade 8 has made a few. With outside help Terry learned
social skills helping him successfully interact with his fellow classmates.
Terry also suffers from anxiety. Since his diagnosis Terry comments Asperger
Syndrome “ makes me more tired with the medication and it takes up time to
see lots of specialists.” Terry plans to go to University in September 2004.
He is a smart young man with a bright future.
Despite his diagnosis Terry has had trouble
from both students and teachers alike. Bullying from grades 8-11 was very
bad. His classmates have teased and mocked him with such names as
homosexual, lesbian, swearing at him with curses, calling him a girl and IT.
He says they “used their body with violence and numbers (in a group)”.
James Vosburgh is another autistic individual.
Still living at home with his parents he pays rent. Currently unemployed he
looks for jobs to earn money. In school James made some friends and
currently hangs out with 6 pals. His family totally accepts his diagnosis
and they’ve found local services for him to access. Since being diagnosed
James comments life with Aspergers being a “bit more difficult-my
understanding of it-held you back a bit.” Personally James says Asperger
Syndrome does not affect him much. His friends know about his diagnosis and
ask what it’s like to be autistic. James has had previous relationships. He
tells about the time when he almost married: “I knew this girl since I was
7/8. We weren’t serious then until grade 10 (15/16). She was in grade 11-a
year ahead of me. So out of high school we were going to be married. One
night at 7pm I called her and said ‘I have a very important question to ask
you’ and she says ‘ok, I’m just eating dinner, I will be right over.’ She
drove over to my house and parked her car across the street. She started to
cross the street and a car came around the corner and hit her. I was
standing in the doorway when it happened. I ran into street, held her in my
arms, and she looked at me: ‘You have something to ask me?’ I pulled a ring
out of my pocket and said ‘will you marry me?’ She said yes, she closed her
eyes and that was it.” Despite the tragedy of losing his girlfriend in such
a manner James still wishes to either marry or live in common law.
James found some mentors in school who helped
him to learn with a passion. When asked about any teachers who had a
positive influence on him he said, “Yeah, I did-my grade 9 science
teacher-he taught it in a unique way-made it interesting. My grade 8 drama
teacher focused more on acting skills not written skills.” Both teachers
helped to shape his current interests for science and theatre. Due to his
size James was not bullied much in high school but tells of one frightening
incident that happened to him in grade 8: “I was on my way home from school
for lunch and was attacked by 3 guys I knew and they held a knife to my
throat. I was scared but I stayed calm. I told the principal-one went to
jail, two got expelled.”
Samuel, another individual with Asperger
Syndrome lives his life differently from Terry and James. At 26 he is a
brilliant writer of plays and performs some of them solo. Having a flair for
the dramatics helps him to compile music into story format making the
audience connect with his work. The result? Tears flow because of the
emotions and issues dealing with loneliness and autism. Samuel’s great sense
of humour is present with his humorous phrases as “What in the fooky fooky
are you talking about?” and “Son of a house!” Samuel was originally
diagnosed autistic as a child but never learned of this until he was
diagnosed with Aspergers when he was in his teens. Samuel’s family has been
supportive of him when he was growing up yet there were times when his
family didn’t know what to think of him. Regardless they “pressed on raising
me as a child and teenager even though the outside systems interfered with
the rearing” as he puts it. However he comments, “but I am still autistic.
Period. Because it’s the same wiring, the same way of processing
information. Asperger Syndrome is just another sub-label in a sub-labeled
drenched medical view.” Growing up Samuel spent a lot of time by himself
making few acquaintances and friends in which some were best based on an
interest. He doesn’t make friends unless he feels he needs to and finds it
hard to make them if it’s just an excuse to be social with other people.
Currently Samuel has a soul mate and is connected to friends and adults who
share the same autistic system as him. He was bullied in elementary and high
school and vividly remembers a humiliating incident where his classmates
pulled his pants down in front of people at the age of 6.
Terry, James and Samuel are just a small
sample of autistic individuals who live their lives differently. The true
worlds of the autistic mind are hidden beneath the labels and the worries.
Each autistic learns differently and has unique ways to cope with life.
Though ignored and ridiculed in many cases autistics shine out from the rest
of the crowd making the world a more interesting place to live. They are
employable and can learn valuable skills for the workplace. And though many
now are being diagnosed younger many older middle-aged people have also been
diagnosed. Most important autistics need for their voices to be heard-they
want to tell the world they can live a normal life and function
© Tara Kimberley Torme 2004