See that photo up above? If you don’t, pop into your email or onto TylerKnott.com and find this Signal Fire: The Sunday Edition and take a second to look at it. I think, without knowing it at the time, Sarah managed to snap a photo of me that represents my soul, my being, more than any other. In the middle of absolutely nowhere, on my own weird journey, leaping without ever doubting I’d make it safely to the other side, without ever testing the depth, the width, or the sinking should I fail. This is me, this is autism, and the two are one and the same. As today is the first day of Autism Awareness Month, I figured this is the perfect time to discuss it, to discuss the elephant in every room that some people treat like a disability and avoid talking about, whilst others treat like a superpower and love praising it. I did a post like this last year, but there’s a lot of new faces, and Autism Awareness Month is a brilliant time to dive back in, especially as I wish to discuss one major aspect of it, and how it can affect those on the spectrum. Here we go:
My name is Tyler Knott Gregson, and I AM Autistic.
I Don’t have Autism, it’s not a disease, it’s not some rash that I picked up from cuddling with frogs in Belize, I Am autistic, it’s part of the fabric of my soul, the sinew, the meat, the synapses, the water that keeps it all floating inside. It’s not a diagnosis, though I did receive one, it’s a description, just like my eyes are hazel (though they too change from day to day), or my hair is dark blonde, or that I stand 6 feet 1 inches tall. I am autistic, and for those that just meet me, it can sometimes explain a lot, whilst other times come as quite the shock. Wanna know why? Masking.
*I just read a wonderful article on Healthline on precisely this, on Masking, the what the why the who and the how it comes across. If you wish more information than I am imparting at the conclusion of this here Signal Fire, maybe pop over and check it out.*
Masking when it comes to autism, is basically as the above article says, a social survival strategy. It is a form of compensating that happens, sometimes consciously, sometimes (and I am this almost completely, nearly always) at a subconscious level. It can manifest in a dozen dozen ways, from forcing eye-contact and literally counting the seconds until you look away (I do this, the whole time I’m talking to you, yes, really), to trying to mimic or imitate facial gestures or smiles, to burying emotional responses, to hiding our passions (or at least as much as we can), to forcing ourselves to push through absolute sensory overload that can come from noise, light, crowds, textures, smells, tastes, environments, weather, etc, etc, etc, etc, on towards infinity. Often these are done for the benefit of the person on the receiving end of an autistic person’s company or time, often it’s done for the benefit of the autistic person, so they can make friends, make a romantic connection, not be fired from a job, not stand out in the crowd they hate, not draw attention, or to avoid bullying or mistreatment. Whatever the case may be, here’s the simple truth of it all:
Autism masking is fucking exhausting.
Imagine doing advanced calculus, while wearing underwear made of coarse wool, while running a marathon backwards with spotlights shining in your eyes, down a course lined with 3 million radios all turned up to full volume on different channels, with skunks spraying the air every 2 minutes, while having, or attempting to have a conversation with someone you love. This is how it feels to be in my shoes a lot of the time, this is what I am constantly dealing with when I just make my way through a minute of an hour, of a day, of a week, of a month, of a year. This is every day. This is masking, to me.
Funny thing is, my late diagnosis meant that I didn’t receive the tips, the tools, training, or therapy to help me deal with this. My masking was invented out of thin air, conjured up out of necessity, I am a million coping mechanisms all happening at the same time, invisible to all but those who know me very, very well. For everyone else, I might seem just a bit weird, a bit quirky, to some, I might seem completely and totally neurotypical. Depends, I guess, on the person, on the day, on the mood I find myself in. Depends.
I believe wholeheartedly, my creative masking, my adeptness without even knowing I was adept at all, at masking, was half the reason for my delayed diagnosis. On the surface, I was still waters in some sunset light, maybe not always, but often, but beneath, down lower than almost anyone ever dove, I was an earthquake. I was volcanic in my constant creation, my constant destruction, my constant flowing of mental heat and fire and lava and stone. Was, is, will be always. This is me, and this is what it is to be me.
The strangest part, and it’s always been the strangest bit for me to comprehend, is that I don’t do this for anyone else, not really. I don’t do it to seem “normal” because really, what’s fucking normal anyway? I don’t do it because I’m afraid of what people will think of me, I’ve never cared of this. I don’t do it because I want to be liked, or accepted, or find approval or admiration. None of the reasons for masking that I read of explain why I do it, where it came from, so I had to find my own. Quite simply, to go back to the basics, I mask because it is how I survive a day. I mask because it’s easier to do that most often, than it is to exhaust myself further trying to explain a why in my behavior that doesn’t have an answer, it’s easier than trying to apologize for something I don’t even think needs apologizing for, it’s easier than trying to clean up the mess that autism creates, because autism doesn’t fit where everyone wants it to fit, it doesn’t dress the same or act the same or sound the same or eat the same or any other same there is to same. I learned to mask because I didn’t have any help, not really, and so I dug myself out. I created little routines that only I knew about, little totems only I carried, little reminders going on constantly behind the scenes. At all times there’s a voice inside, sometimes whispering, sometimes shouting, sometimes singing. It’s there though, and it guides me through myself.
It should be said, I consider myself lucky. Autism is a spectrum, big and wide and a billion colors across. I am lucky that my autism manifests itself the way it does, and that I was able to be somewhere on that spectrum that allowed for a form of masking that soothed me, that allowed me to live a life alongside neurotypicals, that allowed me to travel, to write, to create, to communicate, even though sometimes I struggle. Some people who are autistic aren’t where I am on the spectrum, some cannot mask, some cannot make it through a day the way I can.
Strange this spectrum, this wide river of color that is autism. I love where I am on that rainbow bridge of neurodivergence, but I will never lie and say it is easy, that it is a simple task to even be me for a day. We all have our hurdles, I believe this, and I believe even people who are not autistic wear a million masks just to endure their own trials and tribulations, just to feel safe and comfortable in their own skin. We all wear them, some just weigh a bit more, some just take on a little bit more difficult a shape.
This Signal Fire is simply about awareness, and what better time than the kick off of Autism Awareness Month? My only hope and advice is, it starts a conversation, a dialogue about all this, about masking, about neurodivergence, about how we endure the minutes of being who we are. I hope, I hope.
So, ask any questions you may have, offer up any insights or commentary you might feel, be they similarities in your own experiences, or difference. All is welcome, and if we’re all just a little more aware, what magic can come from it.
Thank you, for loving me as I am.
The masks that we wear
to survive inside our skin
can exhaust our souls.