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I Am More Than My Autism Label

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Having autism isn’t pretty; it’s not a superpower or an advantage. It’s not something I’m proud of, and it’s not anything like what they make it out to be on those TV shows. It’s so much more than someone could ever just act out. So please, I really don’t want to hear about how I remind you of “The Good Doctor.” Don’t try to tell me I’ll grow out of it, because there isn’t a cure. It’s not something I got from a vaccine or from eating poisonous mushrooms when I was little. I did not catch it from some kid at the park.

I’ve had people I don’t know come up to me and say things like, “I don’t know how you do it, and “if I were you I wouldn’t be able to get out of bed.” My response has always been that I don’t have a choice. But I’ve never really thought about it until now. Until it happens to you, you may not realize it’s not about being strong or being Superman, it’s just living. I may be inspiring or someone else’s motivation, but that’s not my purpose or reason for living. If it was you, I hope you would do the same — get out of bed and live anyway. Autism will always be a part of me, so if I chose to let it stop me from being who I want to be, I’m not sure what kind of life that would be.

Autism is a neurological disorder that’s either there or it isn’t; there is no in between. It isn’t just about having a really good memory or being funny all the time. It isn’t just being honest about anything and everything because you don’t understand the point of lying, even when you’re supposed to. It isn’t about being really smart in one specific subject — that’s just a stereotype.

In my experience, autism is only having the ability to see the entire world in black and white when everyone else sees grey. It’s about not being able to understand what you’re supposed to say when someone asks you a question that’s too open-ended. It’s about overthinking and worrying about everyday things before they even happen. It’s about knowing logically how to do something or knowing the way something works, but struggling to get your body to react and respond.

For me, living with autism is almost like if you went to a different country where you don’t speak the language and can’t understand what other people are saying. You get labeled because you’re the one that’s different. You become so frustrated trying to figure out what they’re saying, but you just can’t. It’s hurting and tears and feeling empty inside where those missing pieces were supposed to be. It’s being misunderstood and lost and sometimes not wanting to keep trying.

For me, living with autism is having to deal with comments about how I don’t look autistic and asking if I’m sure that’s what’s “wrong” with me. It’s about not being able to use my words when I want to because they aren’t there.

For me, a meltdown is like trying to breathe again after you’ve fallen and the wind just got knocked out of you. You try to get up, and you realize you can’t breathe — except no one else notices what’s going on around you. You can’t talk or ask for help, so you start to panic. The tears start to build because you’re scared. But no one can just knock the air back in, so you have to wait it out. Eventually you’re able to catch your breath again, and you’re fine. But your face may not be because it got really red and tear stained. A meltdown hits me like a raging storm, and when it finally dies down, it leaves the aftermath. But you can’t make it better or try and hide what just happened. You can only make peace and let it go.

My life with autism is a neverending, raging war, but it’s about getting up every single day and still fighting. It’s struggling in silence, but going on anyway. It’s about being brave, even when I don’t want to be. This road is not one I want to be on, and it’s not one I ever would’ve chosen. It’s long and most days it takes the life right out of me. It gets really lonely sometimes.

So please don’t forget that while it may not mean much to you, your words can do more damage than you realize. It’s easy to say hurtful things and be judgmental; it’s not so easy for someone like me to be judged. People with autism are only human. We still have feelings and things we’re afraid of, just like you. We still need to be loved. We aren’t aliens, robots or science projects. You don’t have to understand, but know we are the ones carrying the colors this world wouldn’t be able to see without us. If nothing else, just love. Just because someone may look completely fine, doesn’t mean they are — so be kind, always. My stripes will always be different, but my heart still almost beats the same.

Getty image by Wildpixel.

Originally published: January 16, 2019
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