“A person with autism lives in his own world, while a person with Asperger's lives in our world, in a way of his own choosing.”
I was sitting with a book in my hand, as I watched through the window of my room as the afternoon became darker and people walked from one side to and fro. It was a little cold outside and that's why I was dressed in my blue hooded sweatshirt. It's my favorite piece of clothing. Another essential element of my clothing is my watch with chronometer included. It helps me organize my schedules. The problem is that sometimes other people alter my plans. And I can't stand it, because reorganizing times is not always an easy task, and if it is, the solution is not always a good one. Right now it was 7:36 p.m.
This was the place where I feel most comfortable and safe all over the world, my room. It's always happened to me, even in my old house. When I was little too. That's why my mother, in my saddest days, if she wants to talk to me, comes to see me in my territory. My bedroom is mainly configured in blue colors. A giant map of the solar system extended over my roof; on another side was a shelf that was full of books, all placed in alphabetical order. Previously I had gone through a phase in which I took them all out and ordered them every day, but I had already given up this habit. I also had a poster of Einstein (a famous Asperger).
Basically this is me. My name is Rachel Roth. I'm sixteen years old, five months and eight days old. I am a small girl, specifically my height is 5'5" with a weight of 110 lbs. Or at least that was my weight last time. I'm also right-handed and a little clumsy.
I'm interested in math and as you may have noticed, I also like the color blue. The sky blue also because it is a semiclear derivative, of intense saturation of that color. Sky-blue is an adjective that indicates that something belongs or is relative to the sky. It comes from the Latin caelestis and this from the word caelum (sky, firmament). This adjective is often associated with certain names. Some examples are: celestial bodies (comets, asteroids, natural satellite planets, stars...) or celestial maps (plane or schematic drawing that includes constellations and their stars that serves to locate celestial bodies). Ah! I also like that color because, in addition to mathematics, I have a fondness for astronomy. If you talked to anyone who knew me, they'd say I'm monothematic. But not many people know me because I don't talk to people much.
You know why I like math so much? This is because math is simple and easy. There is always a correct answer and all you have to do is know how to get the answer and no problem. Math isn't like people. The numbers were predictable, the numbers were secure. People, on the other hand, weren't. People are confused and strange, and one face can mean twenty different things depending on a million small and unimportant factors you're supposed to know. There was a certain consistency in numbers that I could never find in people. Seven would always be seven, but a person who smiles may be happy, or may be mocking you, or may simply be being polite. Frowning can be a sign that a person is angry or frustrated, or may be hungry, sad, sore, depressed, confused, disappointed, or constipated. A lot of things, don't you think? One can cry of happiness or sadness. An eye contraction could mean the difference between humor and sarcasm. Even words can have various meanings. However, 4 + 6 would always equal 10, even if you wrote 6 + 4, or 6 + (2x2). And that's why I like it so much.
Do you want to know one more thing about me? I don't watch much television, even though I like to watch something from time to time. I'd rather read a book or play chess online on the Internet. Boring, isn't it? Well, I don't consider it that way.
One of my most outstanding features is my memory which, although selectively, seems to work in a photographic way. For example, I love the Star Wars and Harry Potter films, and I know the order in which they were released, their characters and all the details. I can even recite some dialogues as they are. I'm also a fan of The Big Bang Theory and the character of Sheldon Cooper, one of the physicists featured in this series, diagnosed with Asperger's syndrome. Just by seeing a single sequence I am able to tell the chapter number and the season to which it belongs.
I usually read science books. I also like novels, although they write things like "you light up my life", "she was fishing for compliments", "he broke my heart" or " she has such a bubbly personality". What's that supposed to mean? I don't know. I have trouble understanding metaphors sometimes but my mother always takes the time to explain many of those things to me.
Talking of my mother, I only live with her. Her name is Arella, and I have no knowledge of who my father is. My mother doesn't like to talk about him at all, so I don't demand that her explain much to me and I don't ask. Mother gets angry if I interrogate her so I resigned myself to living without knowing his identity, although it doesn't affect me much because I am really happy being alone with her.
Relationships? People aren't really interested in any kind of relationship with me. And you know why? Well, now I'm about to explain that part. The most important one I think.
One significant thing is that I am Aspie, that is, in technical and scientific terms, Asperger Syndrome. Or, to put it another way, I have HFA/SD, which means High-Functioning Autism Spectrum Disorders. Let's just say I'm often considered a weird girl, with few friends (although I would like to have more! only sincerely I don't know how to do it), a little rude on certain occasions (something that is totally false, because I am very respectful of others, but sometimes I find it hard to understand the stupid social rules that govern everyday life).
This is not a disease, but a neurological condition, so it is for life. An organizational condition of my brain that makes me different from others. Most people are neurotypical. Neurotypical (NT) is a neologism widely used in the autistic community as a label for people without autism spectrum disorders. In its original use it referred to anyone who is neither autistic nor has an autistic-like brain. These are some of the characteristics of the NT: they have a hard time being alone and always need to be with other people. They're intolerant of differences between people. Poor ability to analyze details. Their interests in life are to improve their status, impress others, etc.
How did it all start? When I was little girl, I already knew I wasn't like the others, but I didn't know the reason. When I was eight years old I was diagnosed, and then I understood why others seemed to me to be from a different planet than mine.
I was always different from the rest. When I was a child I always woke up in anguish asking for the specific day of the week, the month and the number. Every morning I would ask the same question and then I needed to know whether or not I had to go to school that day. It was also very important for me to keep to a schedule. Whether it was something that had to happen on a specific day and at a specific time, or something that simply had to happen every day. But if it didn't happen, I'd just get too anxious and have a tantrum without hesitation.
During my childhood, every morning my mother prepared a small portion of porridge with banana slices for my breakfast. I liked the smooth texture of the porridge. And at lunchtime, I liked to eat ham sandwiches, but the bread had to be without the crust. And at night, anything was fine, although the different ingredients were not to touch each other. I wouldn't eat the food if the different kinds of food touched each other. As for dessert, chocolate was my favorite or also flan, also for its soft texture.
Although I started speaking a little later than other children, my language was very correct, although I always used to talk about my favorite topic at the time, "the dinosaurs" and it was very difficult to change the theme of conversation. I was a very smart girl, I learned to read by myself and I loved reading dinosaur books. Did I say that before, didn't I? My favorite tale was one that told the story of a dinosaur that didn't fit and that other animals didn't understand. Just like me.
It was difficult for me to use my excellent language to share with my mother the things that happened to me at school or the things that worried me. I didn't seem to feel the need to share experiences or feelings with the people around me. While other kids preferred to color, paint, and interact with kids their own age, I wasn't interested in games typical of my age and spent most of my time disassembling toys and reassembling them. My mom didn't like me doing that because she said it was expensive to buy new ones. I was fascinated to know how they were made and what was the mechanism that made them work. Once I found out, I would place the toy on its shelf and never touch it again.
I had a very personal world and it was difficult for me to share it with other children. At school my teacher had already shown concern for me. Despite my intelligence, I had no interest in schoolwork and my academic performance was not as expected as it was very difficult to get me to work in a group. In the schoolyard I was always alone and when I occasionally tried to join the game of my peers, my way of acting was so "clumsy" and naive that I made others laugh at me and make fun of me. I didn't like to be laughed at, so I would turn around and leave the place to sit away and be alone with myself. I began to feel isolated when everyone made groups of friends and I was always left out.
To them, I was the girl who spoke strangely and acted strangely. I was the typical girl who knew the names of rare animals, and the not-so-typical girl who ate grass to find out how her fellow herbivores felt. I was angry about the bad things they said about me, like calling me "retarded girl."
Something obvious is that what is not known inspires fear, and with fear comes discrimination towards that "other" that raises questions and mysteries.
Then came the questions from me, "Mom, is something wrong with me? Am I sick?"
Although I wasn't an aggressive child, in some situations I showed strong temper tantrums and inappropriate behaviors such as throwing objects or shouting. Particularly difficult was the Physical Education class, in which I showed high levels of anxiety, difficulty following the norms and little understanding of the basic rules that govern team games and sports. If I was forced to participate in these activities, strong anger would appear and the headmaster would always end up calling my mom.
Although my mother already described me as a peculiar little girl before I was 4 years old, she didn't start to be alarmed until the moment she brought me to school. I was always very bright and excellent in reading and math. My attention to detail was extraordinary, as was my memory in certain areas. The great difficulties in interacting with my classmates, the attention problems in the classroom and the low school performance were, among others, the reasons that prompted my mother to seek help.
After several consultations with different professionals in the fields of education, medicine and psychology, and after receiving such disparate diagnoses as Attention Deficit Disorder, or emotional and behavioral disorder, they finally informed my mother that I was presenting what I just explained, Asperger's Syndrome.
I was so relieved when I got my diagnosis... Finally I wasn't just a weirdo, I actually belonged to a group of people who were just different. It gave me clarity, belonging, tranquility and support.
My psychologist helped me a lot to understand everything related to this, to understand my reality, to learn to identify, to regulate and express my emotions, to understand that my senses are more acute and that, because of that, there are certain sounds, smells and sensations that I do not tolerate, and to accept the difficulties that I have to organize sometimes the information in my mind. It also helped to foster my development, how to help me socialize, how to stimulate my skills based on my condition.
I, now, have already adapted to having a different brain than most. And I don't think it's a disability, I think it's a difference. The problem is that the world accepts differences very badly. Neurotypics think the only valid brain model is theirs. But they're wrong. Autism is not a tragedy; tragedy is ignorance. To be aspie, in my opinion, is not something that should be tried to eliminate or avoid, but to appreciate and value as one more richness of human diversity; in this case, specifically of neurodiversity. Simply a personality or a different way of being; with its impediments, but also with its own values. The problem is not autism itself, but rather the rigidity of those who are not autistic. I wish people understood that, but they don't. That's why I was only labeled as the weird girl from my old school, as well as other nicknames, like a bookworm because I spent a lot of time there reading.
It's not a disease, it's a condition.
I'm not crazy, I'm not freaky. My way of perceiving things and processing information is different... that's why I may look different, but I'm just any girl, with dreams and illusions like any other. Sometimes I just want to be understood.
Right now, through the loudspeaker of my cell phone, a light classical music was playing, Mozart's sonatas filled the whole atmosphere. You can call me old, but this kind of music relaxes me. I always listen to it with my headphones when I'm somewhere public. Not too high, because I can't stand loud noises. In fact, one of the things that terrifies me about neurotypical parties is that they need to turn the music to full volume. Why do they do it? That makes me nervous. I hate loud noises. I don't like parties either because I don't like crowds. I didn't like being pushed, hit, or touched.
Suddenly, three blows took me out of my self-absorption and a female voice goes through the closed door to invade the stillness in which I found myself.
"Rachel, dinner's ready," says my mother. "Come eat and come down before it gets cold."
I looked at my watch and it was already 8:04 p.m. I had been thinking for 28 minutes.
"I'm coming now, Mom!” I whispered in a slightly loud tone for her to hear through the closed door and the music. I got up from the chair, turning off the cell phone and placing a marker in the book, between pages 100 and 101 of a thick volume of red spine. I had spent the whole afternoon reading.
I just sighed thinking about what was coming. Tomorrow would not be an ordinary day, tomorrow a new year would begin in a new school. We had moved from Detroit to Jump City, all because my mother had found a new job with a much better salary than she had before. I didn't really like what's new. I didn't like to experience the unknown, at least not when I couldn't learn about it first. I was hoping that I could at least make some friends, and that the school would have a good library so that I could spend my free time.
When I came down the stairs, Mom was already sitting at the kitchen table waiting for me. She wore a long checkered dress covered by a white apron that had three grease stains, two large and one small. Dinner consisted of roast beef, broccoli and mashed potatoes and carrots and everything was arranged on the plate so that nothing was touched.
"Rachel, what have you been doing all this time, baby?" she asked.
"Just reading the book you bought me, it's very interesting," I replied simply.
"I'm glad, dear," my mother says and then sighs to continue her speech. "Rachel, as you know, tomorrow is your first day of school and it's the beginning of a new life, moving to a new city must be difficult for you," she pauses, but then continues with her point. "I know it will be difficult, but I want you to know that no matter what happens, good or bad, I will always be with you.”
Yes, everything would start tomorrow and I was nervous, being as shy as I was, I'm sure that being the new girl in such a small town, I would be the center of attention and I was very afraid of that. I had hoped to meet half-decent people and there was a chance that this city would be a little better than the previous one. Or so I hope.
"I know, Mom," I said.
Dinner ended after my mother told me about her new job and how excited she was to start.
"I love you, Rachel," she told me before I climbed the steps back to my room.
"I love you too, Mom," I replied.
She raised her right hand and opened her fingers in a fan. I raised my left hand and opened my fingers and made our fingers touch. It was like a ritual of ours. We do that because sometimes Mom wants to hug me, but since I didn't like hugs when I was a little girl, we did that instead, and that's how she told me she loved me. Although I honestly don't mind she hugging me now, this action stayed between us.
Then she approached me slowly, as if I was going to move away, and kissed my forehead, then turned around to go wash the dishes.
I started walking to my bedroom until I reached the third step and my mother spoke again, capturing my attention.
"Good night, baby. Rest," she spoke as she scrubbed a dirty dish with a yellow sponge.
"See you tomorrow, Mom."
I slowly climbed the stairs, finally arrived and put my hand on the doorknob.
Rest. That would only happen if the anxiety allowed me to sleep.