Every day I live with and struggle to compensate for my autism. It pulls at my brain’s strings like an invisible puppeteer, controlling every mental and physical move I make, affecting the way I communicate with others, and gives me very little information back regarding my surroundings. At 23 years old, I now recognize most of the strings, and I move more freely, but I also know that they will never completely go away.
I think it is hard for other people to understand these struggles within me and the restrictions they put on me because I do not exhibit many of the visible signs one would typically associate with a disability; I do not “look” disabled. So, I thought it might help if I describe some of the more “invisible” aspects of my life to help people better understand me and autism in general.
For instance, as I am writing this, every so often my attention is drawn away from the computer for reasons which I cannot fathom and which only make sense to me when I am in the moment. During one of these “mental breaks,” I find myself lost in thought about nonsensical, abstract ideas and it is hard for me to break away from them. Many times someone has to bring me out of my deep thoughts by speaking to me. During these “breaks,” I am truly alone in my world without knowledge of time passing or my immediate environment.
I also have other issues with losing focus. While I pride myself on being able to recognize small details others may not notice, this sometimes causes me to lose track of things I should be concentrating on. I might get stuck on one particular idea, thought, or step and temporarily forget about the rest of the task or activity I am engaged in. At these times, I either remember the other concept much later than I should and then act on it, or other people need to remind me of what I have yet to do. Either way, it puts me way behind with my main goal of completing the task at hand.
Furthermore, my autistic mind is especially concerned with perfection and having a controlled environment. If something is out of place or in a position that I do not like, I notice it right away and become anxious over it until that detail is put back to the state I desire or until someone can convince me that the alternate state is okay to have. Outside environments drive me nearly up the wall. They are chaotic to me, and even though I can sense a natural order flowing through them at times, I do not always feel I am a part of it. The wind and insects bother me. Sometimes the mere openness of it all is too much for me, and the unpredictable nature of nature itself can make me anxious. I do not like to be surprised by things I cannot control. I much prefer a perfectly orderly environment, but I also understand that I will not always have it.
An area that severely affected me when I was younger was my hypersensitive sensory system. Most people are able to handle being bombarded with many different types of stimuli because their brains have the means to process it all. As a child, I had no such means and it could be extremely overwhelming. To me, it felt like the Energizer Bunny beating his drum directly into my ears, an MTV music video hypnotizing my eyes, and a perfume store’s contents wafting continuously into my nostrils with a fuzzy caterpillar crawling all over my body biting down on certain parts of me at the most undesirable times with the force of a ballistic missile—all at the same time and with no way to rid myself of any of these sensations on my own. With the help of many different therapies though, I have been able to compensate for many of my sensory issues, and I do not suffer from as much sensory overload as I did as a child. I can imagine that others with sensory struggles have experienced many of the same sensations as I did.
Another unseen aspect of my life is that I have issues deducing hidden meanings in other’s facial expressions and body language even though I have learned what the proper social signals are. I cannot always put the signals together with a particular facial expression, body stance, or gesture; therefore, I might not understand what someone is trying to express to me unless they specifically state what is on their mind. When I miss others’ signals, they may think that I am being rude, but this is not the case at all. I love conversing with people; it is just that the ability to unravel any unspoken or heavily implied message may fail me at any given time. I realize that, in a lot of ways, my view of the world is shaped by my own misconceptions and missed information. Viewing my environment through an autistic prism makes it harder for me to understand information that others find quite easy to infer. To me, this is the biggest manifestation of my autism as a disability; even though I have physical issues I have to deal with that are visible, the bigger issue is that autism hinders, and sometimes prevents, me from seeing the world in the same way that others see it. I can push through, but I need a great deal of information in order to fully understand what is being presented to me; especially in a social setting.
My autism has been a significant factor in how I have led and continue to live my life. I am learning to compensate for and, in some cases, overcome the limitations my autism has caused me. I have often heard people with physical disabilities say that when they became limited in one area, it opened a means to excel in other areas. I would like to think that this is true for me as well. I can have a limited understanding of the world around me and how it works, but I can also voice my perspectives through my writing and help others to understand how my mind works. My autism is an “invisible disability,” but I am not invisible.