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 imposter, 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 a person with autism. 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 person with autism, you have met ONE person with autism. 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 stimulation1 ) 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 people with autism, 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.
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.