During Autism Awareness Month, I will usually write something about all the things I have overcome despite being on the spectrum. Although I feel those things are very important and have a place to be shared, I also feel I need to speak to the struggles of being on the spectrum to help educate others.
When I tell someone I have autism, they usually respond with disbelief. “No way, I never would’ve known.” “Oh, it must just be a mild case,” or “I know someone with autism, but theirs is much more severe than yours” are just a few of the common things I hear.
I understand these people are trying to compliment me; they are trying to tell me how capable I am. But when people say things like that, it discounts the difficulties I face. As someone whose autism is less visible than others, I can tell you I face many struggles; you just don’t see them.
I understand that I am different. Every move I make, I have to think, “is this the neurotypical way of doing things?”
If I’m in a group I have to tell myself, “don’t bring up one topic too many times,” “don’t say anything weird,” “stop fidgeting,” “don’t rock back and forth,” “speak clearly,” “make eye contact,” “make sure your body language shows you are listening and you care,” “don’t interrupt,” “wait for your turn to speak — but how do you know when it is your turn?”
I am constantly trying to decode what everyone is saying through the sensory noise of fluorescent lights, chatter from other groups of people, the sound of shoes walking across the ground, humming of fans and utilities in the building, and a million different other sounds that all change depending on where I am. Not to mention trying to decode all the analogies and metaphors you neurotypicals use! Can’t you guys just say what you mean rather than implying it? Ha.
I don’t want to toot my own horn, but yes, I am fairly bright and I do have some awesome talents. I see the world from a very unique viewpoint and I am very insightful. I can thank my autism for that, that’s for sure! But my life on the spectrum isn’t easy, it’s so incredibly challenging and sometimes way too difficult to understand.
I do speak. What many people don’t realize is that I spent the first five years of my life in complete silence before I said my first words, and to this day my speech is the first thing I lose when I am in a stressful situation.
I am in all “regular” classes at school. But I still leave each class five minutes early to avoid the busy hallways and I constantly need extensions to decode what I am being asked to do.
I can have a “normal” conversation. I am great at in-depth conversations, but if you want to have small talk, I am not the person. Plus, if you’re a fairly wordy person, expect me to only pick up on half of what you’re saying.
Even though I face these challenges, I wouldn’t change my autism for the world. It’s intertwined into each part of my being. It is a large part of who I am. It makes up my quirks and my challenges, but it also makes up my talents and my successes.
I just ask that you please remember, autism is autism. We all experience it differently. We are each faced with our own set of challenges. I don’t have “mild” autism, it’s just less visible to you.
Ask questions. Educate yourselves. Be kind.
Getty image by Lekcej.