In fourth grade, a psychiatrist told my parents that I have Asperger’s Syndrome, a disorder included on the autism spectrum that is considered high functioning. My parents, who did not know much about autism, did a great deal of reading on my disorder and suddenly many of my quirks made sense to them. While they may not always understand why I do something they will always know the underlying reason behind it. I was truly lucky to have parents who loved and cared for me so much that they worked with me every day to try and help me understand how I should interact with people. I was also lucky to receive psychological help which helped me to come to terms with myself and my disorder and to learn to adapt to the world.
In fourth grade I can admit that I was a mess of emotions such as confusion, and sadness. Depression had taken over my otherwise happy nature because the other kids never seemed to want to be around me. I could never understand why either. I mean, I tried to talk to them, to play sports with them, but they just never seemed to get me. In my own head everything I was doing was normal and I did not see it as something strange but to them it was. Sometimes even my own parents gave me strange looks when I would do something that was “abnormal”.
For nine year old me however, I did not yet understand that every kid does not have an extreme fear of stepping on cracks, and no, not every kid would count incessantly to fifteen in their head to calm nerves. I did not see that other kids sat still while I fidgeted around because I wanted to “get the germs off me”. I also could not understand why I could not interrupt my teachers when I had something important to say. I would get in trouble, and my parents would be contacted because I was disruptive.
It was not until I finally started to receive therapy that I understood what I was doing was not normal. It was also at this time that I realized that I would never fit in with the rest of the crowd just simply based on the fact that something in my brain was functioning differently than the rest. For a kid, that was a hard revelation to deal with.
Through the years I have learned how people are supposed to interact with one another, I have developed some semblance of what personal space is, and also that interrupting people is not polite. Slowly I have gotten rid of many of my nervous ticks, although under extreme times of stress they all come back in a rush and I lash out in ways that scare me. Though the biggest thing I have in my life now is friends and family who love me and work with me through those tough times when my whole world seems to crumble.
I have found though, that many people I meet either seem not to understand me or they dismiss that I am autistic because “I look normal”. All I can ever really think when I hear this is what is an autistic person supposed to “look” like. Often I will continue the conversation as such and they’re left stuttering “well um…well you talk normal and stuff”. I try and explain that speech has nothing to do with my particular disorder, that Asperger’s is a disorder that effects my social interactions and yet they still seem confused. I also emphasize that the reason I act “normal” is because I had many years of help in how to act in social situations. While I can not always control it, the older I get, the easier it has become.
The main reason I am writing this though is to try and explain in some way how I see the world around me every day and hopefully it will help shed a little light on what it is really like to live with Autism.
Starting with the biggest part of it, social anxiety is something I battle with every day. It does not matter if I am going to the store or a family reunion, the anxiety takes hold and I become quiet and reserved. I will ignore pretty much everyone I am in the car with and leave myself with my thoughts which will go to every possible bad scenario that could happen once I get where I’m going. While it is not so bad that I can’t even leave my own house, it does seriously impede my ability to be excited about certain events.
While this is not as much of a problem as it used to be, sometimes my senses do get overloaded with too much information at once. Bright lights, loud noises, itchy clothing, all of these things affect my mood drastically. If I come near bright lights, such as the sun, I turn away and close my eyes. I can not see, even if the day is overcast, the tiniest bit of sunlight makes me cringe. Loud noises, like car horns, and ambulances hurt my ears terribly. These noises will instantly make me cringe and when I was little I would hide myself and plug my ears singing incesently so the noises would stop. Irritating clothing is also something I never did well with, any piece of clothing that even remotely made me feel itchy and I was instantly moody, I would get anxious and sweaty and want to take the clothing off right there.
Again, not so much of a problem today unless I am under extreme stress. When I was little though I would blink swallow and turn my head all in patterns of fifteen. What brought this on was if I accidentally touched anything I did not want to touch. In my mind these ticks would get rid of the germs. I would also sometimes shake my whole body if another person touched me, again in an attempt to get rid of the germs. Sometimes I would kick, and if for some reason I was not able to complete the cycles of fifteen I would become very anxious, I would sweat, be very uncomfortable in my skin, and become angry. While therapy has helped a lot with this one, for my younger self it was an uncontrollable urge that controlled my life.
I’m going to leave it there as these are the biggest things in my mind to understand, but there are many many more symptoms besides these but these three are the ones I fight with the most. Another thing I did want to address though is those who have some assumption of what they think autism looks like. Unless you live like this every day there honestly will never be a moment when you understand what it is truly like but assuming that it is not as bad as it is can be offensive. Saying things like you don’t look autistic can be offensive because to someone who has it, it completely undermines the struggle gone through every day. And don’t ever ask an autistic person if they wish they could be cured, while there are many days I wish I could be normal, at the end of it, there is not one single thing I would change about myself. To me, there is absolutely nothing wrong with me and that is how I like it.