There Were Words For This
Living with autism after the diagnosis has been… strange.
I still hesitate every time I say the word "autistic". There’s this voice in the back of my mind that says; "This is a trend" "No one is going to believe you" "You’ve made it this far" "Aren’t we all a little autistic?"
I still hesitate to really own this part of me because it still feels like society treats autism like it’s optional. Like it’s some sort of hat you have the choice to put on and take off depending on the day.
And in a way... I understand why people think that. Some of us become such good chameleons that it can seem like we aren't autistic at all. I've been able to function in society for thirty-five years, haven't I? I made it this far without a single person recognizing it. Without anyone putting words to it.
Yea I’ve gotten this far, but not particularly well.
I struggle more than most people know & most people I know. Maybe other people just don’t post about it? Maybe they don’t air their dirty laundry like I do? Maybe. But I can tell you that the level of distress I can experience over things that seem insignificant or minute to the general public has been astounding for as long as I can remember.
This didn’t suddenly appear after a diagnosis. It’s been here my entire life. Before the diagnosis. Before therapy. Before self-help books. Before adulthood. All I could understand was that I was… different.
I didn’t have words for the experience. Just— I’m different. I didn’t know why. I didn’t know how. I just was.
It started with hearing, “You’re weird.” A lot.
The level of excitement I’d have for something was too much. The amount of eye contact I’d make was too much or... not enough. My bluntness was too stark. My honesty was interpreted as rudeness. All the while, I genuinely couldn’t see what was wrong. I wasn’t trying to be offensive. I wasn’t trying to sound fake. I wasn’t trying to hurt anyone’s feelings.
I just kept noticing that people were receiving something completely different from what I intended. It felt like there was a translator missing between my brain and everyone else’s.
Before the diagnosis, all I knew was that I struggled. I didn’t know why. But the feedback around me was almost always the same.
"You’re lazy."
"You should be able to do this."
"If you’re not doing it, you must not care enough."
It must be deliberate. A lack of interest. A lack of willingness. A lack of effort. Just… a lack. As though I could just decide to think differently and suddenly become capable.
In college, theatre school, I remember having days where I felt consumed by rage, irritability or complete mental exhaustion. I’d isolate myself (much like high school lunchtime where I'd hide in the bathrooms to eat alone). I’d hide behind the theatre curtains between classes and slept through a whole class (or two) because I was so impossibly tired I couldn’t keep my eyes open.
Again, it all amounted to laziness. Or not caring enough.
Definitely not the case... If anything I cared TOO MUCH that it would burn me right out.
I didn’t have the language to explain why I was the way I was, so I lost friendships, relationships, opportunities... When you don’t know why something is happening, it’s almost impossible to find solutions. At least not solutions that actually address what you need in order to sustainably succeed.
So I started asking questions. If no one could explain why I felt different, maybe I could figure it out myself. I started paying very close attention to behaviour. Not just my own, but everyone else’s. How are people affected by everyday life?
Why does this reaction happen? Why does that one? How do we all coexist in the same world when we’re all receiving the same information so differently? Observing became my kryptonite. Not only was it fascinating but it became necessary for survival.
It was both the question and the answer.
Everything became about interconnectedness. Patterns. Cause and effect. If I acted this way, I got this outcome. If I acted another way, I got another.
This outcome made me feel ashamed. That one made me feel steady. Noted.
Without realizing it, my life slowly became about preserving energy and making sure everyone around me felt comfortable enough that I could survive.
But more often than not, I didn’t have enough bandwidth to keep it up. So I chalked it up to…
"Maybe I’m just a bitch."
"Maybe that’s just who I am."
Now? I struggle the same. But I have words. I have explanations. I have reasons that finally make sense. That doesn’t mean I suddenly have all the answers.
I don’t.
It just means I can usually identify where the emotion is coming from or how I got there. Old habits die hard, though. I still go about life pretending I have it all figured out. The underlying effort of pushing through, fighting my own thoughts, regulating my emotions 80% of my day, managing my energy, trying to be “consistent”… it gets heavy.
Really heavy.
Because I don’t exactly walk around announcing every second day that; “today I’m struggling to be normal” Even though that's probably exactly what I need.
And I know even writing about being "normal" like I somehow wasn't is pretty harsh.
What I really mean is that there are days I simply cannot operate at the same pace, the same capacity, the same level of ease that seems to be expected.
Those are the days people don’t see. The days where every— single— task, feels like lifting something twice my size. The days where my nervous system waves the white flag while the front facing version of me keeps insisting we have things to do.
Sometimes it feels like I’m living two lives.
There’s the adult everyone sees, and then there’s the real version of me underneath it all. She often feels like just a child. A very vulnerable, fragile, innocent child.
The one who’s scared.
The one who’s overwhelmed.
The one who’s desperately trying to keep everyone happy while wondering why existing seems so much harder than it appears to be for everyone else.
Sometimes all she wants is permission to say…Today’s a hard day.
Today I don’t have enough energy.
Today I need a little more grace.
Consistency has become another interesting one. I always felt like consistency meant one hundred percent. Every single day. No exceptions. If someone tells me they expect consistency, my brain translates that into "perfection". You need to be this way all the time.
That’s not even human! Not for autistic people. Not for neurotypical people either. But my brain doesn’t naturally leave room for nuance. It’s incredibly literal. You said five o’clock? I’m expecting five o’clock.
Not 5:07.
Not “around five.”
Five.
Ironically, while my brain craves precision, I often struggle to produce it myself! My thoughts don’t move in straight lines — talk about hypocrisy. Trust me I'm as annoyed if not more about this than anyone else could be.
Logic, to me, often looks different than what other people call logical. I take the long way around, because that’s genuinely how my brain maps the world. I also want to do everything right. And “right” doesn’t just mean good enough. It means every detail. Every possibility. Every inch and every corner.
Which, ironically, often gets in the way of any real momentum or stops me from starting at all.
After my diagnosis, I can usually recognize when I'm "tisming." I know that's not the clinical term. It's a made-up verb, as if autism is something you do instead of something you are. But some days it really does feel that way. Some days I've masked so well that the "tisming" barely shows.
Sure, I can sometimes catch the spiral before it completely takes over. Sometimes; I can pause. Redirect and ask for grace. Remind myself that my nervous system is reacting before my logic has had a chance to catch up. But I haven’t gotten much farther than that. I’m still learning. And then some days I just can't. Today was one of those days.
One of those days where I’d been holding everything together so tightly, trying so hard to “adult” the way I think I’m supposed to, despite the fear and anxiety slowly building underneath, that eventually the whole thing came crashing down. There isn’t really any hiding in those moments.
And they’re not proud moments. They’re just…real.
The diagnosis didn’t erase the struggle. It also doesn't necessarily excuse it... It just gave the struggle a name. I don’t have the answers. I’m still figuring out what healthy actually looks like.
I’m still learning how to work with my brain instead of spending every ounce of energy trying to outrun it. I’m still unbecoming everything I thought I was. I’m still untangling years of believing I was lazy, difficult, dramatic or simply not trying hard enough.
And maybe that’s the real work. Not becoming someone new. Not fixing myself. Not finally learning how to be “normal.” Maybe it’s not about just trying harder.
Maybe it’s just learning how to be kinder to the person I’ve been all along.