During my first year in college, I was a bundle of energy and nerves. I
was most excited about having a chance to make new friends. I did not know
anyone when I first arrived like most freshman. However, I was still insecure
about reaching out to people. I still was figuring out what my diagnosis meant
to me. When I introduced myself, I sometimes mentioned my Asperger’s to them. At
the time, I thought that this tactic would help me make new friends. It turns
out it did not seem to improve my chances. Some people would look at me
surprised and responded with “You don’t look autistic”. When I first heard that
phrase, I honestly believed that it was a good thing. I was overjoyed at the
time that I was successful in acting 'normal'. I took this as a sign that I did
not have to worry about being judged for my quirks. I did not understand how
dangerous that mindset was. Instead of helping, it only hurt me because I
developed some unhealthy coping mechanisms in order to camouflage better.
As I became more
involved with the specialized service groups on campus, the phrase started to
rub me the wrong way. I noticed a steady fear of uncertainty among the other
students when talking about topics like job hunting and forming relationships.
It was a struggle because I felt like an impostor, with that sentence "You
don't look autistic" echoing in the back of my mind. I am not criticizing
the few people who responded with that statement. It was a moment of mutual
ignorance from both parties. I do not take pride in hiding my symptoms anymore.
Instead, the phrase reminds me of some painful memories of my childhood. It
reminds me of times when I cried at night in bed wondering why I couldn’t
connect to my peers. It reminds me of when my friends said that they 'like me
anyways' despite being weird and their attempts to make me ‘less weird’. I was
told that I was picked on because I was not trying hard enough to be normal.
While that phrase
was meant as a positive statement, there is a heavy negative undertone to it.
The first issue is that it implies that I do not fit the misconceptions associated
with autistic person. Despite the gradual improvement of representation in
major media, there is still a struggle to challenge old beliefs when it comes to
the image of individuals diagnosed on
the spectrum. The statement “You don’t look autistic” focuses on the idea that
there is a certain look or set of actions that should make my Asperger’s obvious
to the other person. I have seen this counter argument stressed in other places
and I will stress it here to the readers as well. When you meet one autistic person, you have met ONE autistic person. The reason the autism spectrum is
referred to as such is because it affects each individual differently.
The second issue
with the phrase “You don’t look autistic” is that it also encourages camouflaging.
Camouflaging is when a person on the spectrum acts similar to a person who is
neurotypical. This could result in repressing 'stimming behavior' (repetitive
actions that help a person with autism as a protective response to over stimulation 1
) to avoid attention or mimicking certain behaviors observed in particular
environments. This causes a lot of additional stress to everyday challenges.
For example, I am very sensitive to loud, high pitch noises. Fire drills were
hell for me when I was growing up with the loud noises and the crowded
hallways. Though I was usually warned ahead of time, they were very stressful
on me. To avoid meltdowns, I would cover my ears and close my eyes to avoid
being overwhelmed from the drill. Of course this attracted the attention of my
classmates. When asked why I covered my ears, I told them that the noise hurt
me.
They could not
understand because it was not hurting them; it was just a mere nuisance. In
their eyes, I was overreacting to the noise and the crowds. Some of them
started to mock me for it. Others told me that I should suck it up or just
ignored me. By the time I reached high school, I was sick
of the judgmental stares so I stopped
covering my ears even though I was in pain. The other kids still picked up on
my sensitivity to loud noises. They thought it was funny to sneak up behind me
and yell in my ear to make me jump.
Though I did become less sensitive to certain noises,
it caused a lot of stress. Despite not having to deal with fire drills anymore
in college. I still struggle with different loud noises in public spaces. To
hear the statement "You don't look autistic" was validation for me to
continue using the unhealthy coping mechanisms. In the long run, they led me
down to a mental breakdown that affected my school work. It took several years
to break these dangerous habits with the help of my fiancé and family. To develop
a healthy society and improve neurodiversity, this phrase should not be
encouraged.
Fortunately, improved medical understanding can aid in
improving social discourse. A major step is to improve communications between
all the groups involved- from the scientists and autistic people, to the
general population. Improved communications will make it easier to wipe away misconceptions
around both the diagnosis and people with autism. It will be easier to embrace
neurodiversity for everyone in the public sphere. This series will attempt to further
this dialogue. Look out next month for the second article in this series- addressing
the issues of media presentations and people with autism.
Endnotes
1. Self-stimulatory behavior, also known as stimming... is
the repetition of physical movements, sounds, or words, or the repetitive
movement of objects common in individuals with developmental disabilities and most
prevalent in people with autism
spectrum disorders.