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What 'the A Word' Means for Me

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Growing up, I always felt a little bit different. I looked at myself as if I were another person; like I didn’t really know myself. I was the outsider looking in. As I would stare at my reflection, I often found that I truly didn’t understand who or why I was.

Don’t get me wrong, I was an active and relatively happy kid who was involved in as much as any other child: soccer, dance, gymnastics, volleyball… I just found myself to be emotionally distant from my peers when it came to getting along with them. Things seemed so easy for them in areas where I struggled everyday just to try and understand why they did silly things, like smile for no reason in particular. I had friends, but I questioned whether or not they actually liked me. Were they just being nice because they felt bad for the socially awkward little girl? Were they just taking advantage of my loyalty and careful, mother-like tendencies? The anxiety was consuming. What could I do?

I had no idea who I even was apart from my reflection in the mirror. It was like even I couldn’t reach the words that I so desperately wanted to speak. Instead, I played the role of the overly-emotional “tantrum” thrower. It didn’t matter where I was. I screamed and cried at home because I was told to do something I didn’t want to do. I punched the kids at school who got in my way, and then I proceeded to melt down when I got into trouble for it. I was the problem child, the one who had to go see a social worker at school once a week to talk about how to behave. I was the pack a bag and run out of the house in my nightgown type of kid. I was that kid, and deep down I really couldn’t control it, because even I didn’t understand it.

That being said, the one emotion I’ve never struggled to express is love. But even in love, I love deeper than any other person I know. It takes me a while, but once I love someone they basically have no choice but to be my best friend for life. Unfortunately, it seems like other people either can’t or won’t love like me, and I get hurt by that more often than I would like to admit. I like to think I am a warrior, considering all I have been through, but in reality, I’m more like the cowering private who just realized he does not have what it takes to deal with what he just signed up for. I’m sensitive to everything. Criticism sends me into a downward spiral because I’ve done something wrong yet again. This time I was talking too loud in Sam’s Club, next time it will be that I said something inappropriate to the conversation topic.

Up until a few months ago, none of this made any sense to me at all. I constantly found myself wondering why at 21 I still struggled with unbearable anxiety, acted as if I had never heard of a social cue, and could never quite seem to catch the joke on time. I thought it was normal to take hours to fall asleep at night, have no ability to shut off the mind, and have a strict routine to stick to so as not to be frightened by any changes. That was me.

Now, five months after starting to see a psychiatrist as well as a clinical therapist the pieces are beginning to fit together and they have a lot to do with the “a” word. Autism. I have autism, and it took nearly 22 years for me to find out. My mom knew I was different, but didn’t want me to think I was different. My peers sensed my differences. But I never quite understood.

What was that? “But you don’t look autistic.” Yeah and I also don’t look sick until you pull up my shirt to reveal the scars, a feeding tube, and a central line poking out of my chest. I don’t look sick, and I don’t play the sick card often but I will use my wheelchair despite your dirty looks if it means I will have more energy to stay out with friends longer.

Just as with my physical illness, autism does not have a look. Every person with autism experiences it differently. For me, I have some pretty annoying social deficits, and my senses are always in hyperdrive. I am constantly watching, constantly obsessing over one little detail that doesn’t seem quite right to me. I hate overhead lights, have to sleep in a cocoon of about seven different blankets and a huge U-shaped body pillow with the fan on every single night, and when I get past a certain point of upset, there is often a lot of tears, screaming, and scratching or biting myself, followed by running off to hide in one of my “safe places.”

I don’t know what autism looks like for you, but as I am navigating this world and learning the why of the things I do, I begin to understand more and more about who has been hiding inside of me for all of these years. I am Tristan, I have autism, and that does not define me.

This story originally appeared on Tristan’s blog.

Originally published: April 11, 2018
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