Stephanie Keyes

@stephanie-keyes | contributor
I am a 24-year-old woman with Asperger Syndrome/Autism and I live in Oregon. My profile picture is a selfie I took on a roller coaster.

The Mistake My Teachers Made Taught Me a Valuable Lesson About Autism

If you are in a position to provide guidance to a person with autism, please hear my story. Please learn from the mistakes my teachers made. The year was 2001. I had a very strong interest in malls, which still continues to this day. At the age of 10, I was writing the names of malls instead of my own name on assignments. One time, the whole class was working on a project involving illustrating books. Naturally, my version of the project was centered around malls. I became so engrossed in the project one day, I stayed behind in the classroom when I was supposed to leave with the other students to attend another class. I believe that these issues were the reason my teachers decided to ban my special interests from the classroom. They removed my artwork from the wall because it involved the names of malls. I was not allowed to mention my special interests in the school building, lest I have to write 10 times that I would not do so. It felt like censorship. One time, I let a “Lloyd Center” slip out, and I had to write ten times that I would not say it again. I called this rule the “No-Mentioning-Malls Rule.” And I loathed it so much. Photo source: Thinkstock Images During the month and a half that the rule was in effect, I dreaded going to school. This was especially unfortunate, because prior to this, I actually enjoyed going to school. Children who enjoy school as much as I did are a rarity. I remember crying myself to sleep at night because of the rule. I can remember being worried about the welfare of my favorite malls the morning after the 2001 Nisqually earthquake. The rule complicated matters when I wanted to talk to someone about my fears. Fortunately, the teacher’s aide I was talking to allowed me to momentarily discuss the malls with her. I worked with a friend to develop a new language to get around the rule. I named the language “Clairesian,” after the friend’s nickname, which itself was derived from the Claire’s accessory store commonly found in malls. We came up with new words to refer to malls. For example, “Lloyd Center” was referred to as “Scwanza,” and Lancaster Mall was “Magekilanzo.” Using this system, I was successful in talking about malls without getting caught. The rule was lifted by April 2001, and I rejoiced. Unfortunately, it returned in October 2001 during my sixth grade year. At this point, I began using a system of initials to circumvent the rule. For example, mall names like “Boise Towne Square” and “Westlake Center” would respectively become “BTSe” and “WCr” under this system. I remember a story the whole class had to read. It was about a girl who lost her brother. He had been a source of calm and happiness for her. Her father would not allow her to talk about him after he died. I have never related so much to a fictional character as I did with this story. For the next 11 years, I struggled to forgive my teachers for making this rule. I would write my own songs and rewrite existing songs to express how I felt. Resolution came when I confronted my fifth grade teacher about the rule. She thanked me for sharing my point of view and told me that it was a valuable lesson for her to learn. In an unusual twist of irony, I learned she was blessed with a daughter who has autism. Today, we are good friends and I have met her and her daughters face-to-face a couple of times. I forgive my teachers, but I will never forget the rule. It would be a disservice to autistic people everywhere to pretend it didn’t happen. The lesson I have taken from my experiences is this: People with autism are inseparable from their interests. Correcting improper behavior (such as me skipping a class or not writing my actual name on my assignments) is one thing. Oppression of special interests is a whole different story. It is a line that is never to be crossed. As a result of the rule, I have learned to stay true to myself and what I love in spite of such wrongdoing. I hope to use my story as a warning to those with an autistic person in their care. I do not want anyone to have to deal with a “No-Mentioning-Malls Rule” like I did. Special interests bring comfort, joy and growth. My myriad interests have inspired many improvements in my life, such as losing nearly 70 pounds to fit roller coasters, and getting my driver’s license so I could visit my favorite cities, bridges and theme parks. I have considered careers in civil engineering and computer repair. Special interests are vital to the well-being of autistic people like me. Do not oppress our interests. The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

What It's Like to Grow Up With Autism

What is autism to me? I was diagnosed with autism at the age of 2. Though some people consider that to be far too young for a diagnosis, I think I’m one of the lucky ones. Some people, especially girls, don’t get a diagnosis until much later in life (and may still not have one) and spend their whole lives wondering why they’re so different from everybody else. I got to know right away, and I’m glad. All my life, I’ve had very strong interests in particular subjects. At the age of 6, I had such a strong interest in the video game character Yoshi, I actually used the name Yoshi when inventing a new word: “yoshiablic.” This word was meant to describe pleasant feelings I get when engaging in my interests. Throughout the years, doing so involved doing a lot of research on my topic of choice. At age 11, I would remember the grand opening date, the location, the number of stores, and the square footage of many malls, such as Lloyd Center in Portland, Oregon. I have had a variety of interests, including towers, bridges, roller coasters, cars, cities, malls, space shuttles, flowers, video games, the Titanic, volcanoes, astronomy, origami, cats, and bows. My latest interest is in particle accelerators used for scientific research (such as the Large Hadron Collider). I have many talents as well. I graduated high school on time with a 3.81 GPA. I have extensive artistic capabilities, and an enhanced ability to understand myself. When it comes to social interaction, however, I tend to feel awkward and unwanted. I certainly do have a lot of friends, but I’m highly critical of myself and how I interact with people. Also, I tend to have more emotions than I know what to do with. This was my downfall in school, as I had meltdowns on a fairly regular basis. My social and emotional issues have led to low self-esteem in this area. I cannot count how many times I’ve had significant issues at school that warranted a call to my mom. Schools throughout the years have handled me differently. In my opinion, middle school was the one that handled me the best. The teachers there allowed me to be independent, encouraged me to engage in my interests, and had a safe place and safe people for me to turn to in times of stress. As for the mistakes schools made with me, in high school, my independence was taken away when they required me to have a one-on-one aide when I went to class. This occurred following a severe meltdown in which I had cut myself out of anger. I felt embarrassed and that the teachers who forced the aides on me were very condescending. All they ever did was focus on the negative. Every time I tried to mention a way I had improved, they would either object to what I had to say or redirect the conversation to my weaknesses. At the ages of 10 and 11, I was subject to what I feel was the worst mistake teachers have ever made with me. I had my interest in malls at this time. The teachers felt that my interests were a distraction in the classroom, so I was therefore not allowed to even mention them while in the school building. Until teachers made this rule, which occurred twice and lasted around a month each time, I actually enjoyed going to school. I felt violated as a result of this rule, and spent the next 11 years dwelling on it and trying to forgive the teachers that made the rule. Today, I use my experience with this wrongful rule to advocate for other autistic people. As unacceptable as this rule was, it taught me that autistic people are inseparable from their interests. Trying to take away or suppress our interests violates who we are and is almost criminal. I emphasize the importance of interests when I am asked how to best deal with autistic people. I believe interests are a natural, built-in coping mechanism that can enhance the lives of autistics. So what is autism to me? It’s a human brain programmed in a way that is far different from the average person. These differences often put the individual at a disadvantage, much like if an Android phone was in a world run by Apple phones. Autism may have common aspects among people diagnosed with it, but no two autistic people are exactly alike. It is a mistake to assume every autistic individual is the same. Some people (like me) struggle with extreme emotions and social awkwardness, while others can’t even speak or care for themselves. No matter the differences, no matter the struggles, we are all human and deserve to be treated accordingly. The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.