I don’t know if there’s ever a day I don’t hear that phrase at least once. Sometimes I hear it multiple times a day. You look tired. It used to offend me, but now I just respond with one simple answer: “I am tired.”
You see, I don’t just look tired, I am tired. I’m tired almost every time you see me. My face looks exhausted and my eyes are often red because I’m just so tired. But that’s not such a terrible thing. Let me explain why.
Living with autism spectrum disorder means I live life unfiltered. How I experience the world is completely different, and because of that it requires me to pour an incredible amount of energy into surviving each day.
My life is lived in high definition 1080p, all day every day. You may be in 480p, and that’s being generous. Comparatively, my sensory processing issues mean I see, hear, feel and sometimes smell the world in ways you don’t. Your brain probably filters out most of the noise, and visual distractions, and odd smells and odors because it’s just not important enough for you to have to worry about. In a lot of ways your brain manages all that for you, so you don’t have to be overwhelmed.
My brain… not so much. Every day I wake up I step onto the stage of the greatest production of all time. Every day it’s lights, camera, action as soon as my feet hit the floor. My life is the greatest unscripted show you’ve ever experienced; it’s bigger and brighter than Broadway.
Being autistic means my sound crew, lighting crew, stagehands, makeup crew and camera crew are all pretty much under-qualified and unskilled at their jobs. Every day I step onto the stage, the sound and lighting are so bad that it’s borderline obnoxious and at times just painful to listen to and look at. The lights are often too bright or too dim. The spotlight is never in the right place, the house lighting is terrible and all of that impacts my depth perception and facial recognition. Sometimes that’s why I have trouble recognizing people I’ve already met. This means I visually experience things quite differently than you do. It’s actually a lot of work, and sometimes it’s overwhelming.
So I don’t just look tired, I am tired.
My makeup team is usually missing in action. My face looks worn out because I’m unable to hide behind the masks and makeup so many other performers use to hide their true feelings. My face is naked; it says exactly what it’s feeling. It looks tired because it is tired.
I have no stagehands. My brain doesn’t come equip with people to help me understand cues. I don’t always know where to stand, when to enter the stage, when or where to exit the stage or even when to say my lines. I repeat myself a lot, but I didn’t get my script, so usually my one-act play turns into a unique combination of improv, reality TV and stand-up comedy that feels more like a variety show than a Broadway musical. All of this takes a ton of energy.
So I don’t just look tired, I am tired.
My camera crew is not a crew at all. I have one camera, which means I have only one angle, one shot and one view. I don’t get to see the world through multiple perspectives, and more often than not, you don’t get to see my performance from a different perspective either, so it’s hard for you to see me in a different light. You see someone who isn’t excited and doesn’t want to be here, but you only have one angle, one shot of my performance. There aren’t cameras to capture the other sides of me. Yes, it’s confusing for you, but it’s exhausting for me.
So I don’t just look tired, I am actually tired.
But that’s a good thing.
I’m tired because I’ve fought with the passion and the tenacity it takes to step out on that stage full of sensory overload and social anxiety and put on the performance of a lifetime.
I don’t look tired, I am tired but that’s good because I’m doing the heavy lifting. I’m tired because I choose to engage rather than retreat. I’m tired because I know I have something to offer the world, and to bless the world with my gifts I have to give it everything I have.
I don’t just look tired, I am tired, but that’s because I’ve found the courage to be more concerned about my assignment than I am about my appearance.
I’m autistic, and I have an assignment to show the world, to show autism parents, children and other autistic adults that we have a variety of gifts to give to the world. I show up in the work place and the market place, ready to perform no matter how exhausting it is and no matter how unable I am to hide my fatigue. I show up every day ready to perform because the world needs my voice. The world needs autistic voices. When our voice is absent, a void is present.
So yes, I look tired, and yes I am tired, but I’m OK with that because it means I’m leaving it all on the stage.
I may look tired, and I may actually be tired, but I am tired because I’ve also triumphed. I’ve made it through another performance, and I’m excited about doing it all over again tomorrow.
So kudus to all of my fellow autistic friends, parents, colleagues and companions. Keep going. Keeping pushing. Keep performing. The world needs it.
Break a leg,