Reflections on Living with Autism
Sometimes autism feels like a peculiar bargain written into the body, the kind you don’t remember signing yet spend years paying for in small daily instalments. It’s as if someone decided you would be unusually tuned to patterns, quick to learn, capable of holding complex systems in your mind with a kind of effortless clarity—and then, with the same casual hand, decided you would also be overwhelmed by things other people treat as background. Noise wouldn’t just be noise. Light wouldn’t just be light. Smells wouldn’t just pass through you. Movement wouldn’t simply happen “out there.” All of it would arrive with weight. All of it would register. And when enough of it accumulates, the body would respond as if you’re in danger, even when nothing is wrong, even when you are safe, even when the room is ordinary.
That’s the strange part to explain to people who haven’t lived it: the distress is not always tied to meaning. Sometimes it isn’t about what was said, or what happened, or what you’re thinking. Sometimes it’s just signal—too much signal, too quickly, for too long—and your nervous system reacts like an alarm that cannot distinguish celebration from threat.
In that context, social life can become paradoxical. It isn’t that you don’t like people, or that you want to be alone out of disdain. It’s that social interaction has a cost that isn’t visible from the outside, a cost that becomes heavier when your baseline is already elevated by sensory load.
Even the smallest exchange can feel like something you must prepare for, like stepping onto a stage where you have to hold the right expression, the right timing, the right tone, the right degree of eye contact, all while processing the room itself—its brightness, its chatter, its overlapping movement.
And if you’re already stretched thin, the idea of one more interaction can trigger stress, not because the interaction is bad, but because your system is already near capacity.
People often assume anxiety requires a narrative—what are you worried about? what’s wrong?—but there are days where the answer is simply: my body is saturated. My senses have been collecting the world too loudly, and now I’m trying to keep myself from tipping over.
The body piece matters more than most casual conversations about autism allow. Alongside the social and sensory dimensions, there’s this quieter physical layer that you end up managing like a private logistics operation: digestion, gut issues, and the way stress and over stimulation can echo into the stomach and bowels.
Over time, I learned that if I wanted to function, I couldn’t treat my days as a generic schedule that I should just “push through.” I had to start treating them as something designed around my actual nervous system and my actual rhythms.
That meant timing when I eat in a way that supports me rather than sabotages me. It meant regulating my toilet needs and bowel movements with intention, not as a random detail but as part of the architecture of staying well. It meant learning—sometimes the hard way—that if I don’t create space to reset, my body will take that space anyway, often in the form of shutdown, irritability, exhaustion, or physical discomfort.
So I started allocating time away from everything and everyone, time that is just mine, time with no performance required, time to let my nervous system settle back into itself. It sounds simple, but it’s one of the most important adaptations I’ve made: treating regulation as maintenance instead of treating it like failure.
Then there’s the emotional side, which is often misunderstood in a different way. For some of us, the struggle isn’t a lack of emotion but a kind of translation problem: feeling things intensely while not immediately knowing what they are, or feeling multiple things at once with no clean labels, or having sensory overload masquerade as emotion and emotion masquerade as sensory overload.
Add to that the difficulty many autistic people describe around dopamine and motivation—the brain that can become a laser when something truly grips it, and a fog when it doesn’t—and you get a life where routine becomes more than a preference. Routine becomes scaffolding. Not because you’re afraid of living, but because predictability lowers the cost of existence. It reduces the number of variables you have to process.
It keeps the world from being endlessly expensive. When the world is expensive, you become an accountant of your own energy whether you want to or not.
And somewhere in the middle of all that, without necessarily naming it, you start learning how to blend. You learn how to look fine. You learn how to seem normal. You learn which parts of yourself invite confusion, and you quietly file them away when you’re around other people. You learn scripts. You learn timing. You learn how to modulate your intensity, how to laugh at the right moments, how to keep your face in the right shape, how to hold yourself in a way that won’t draw attention. You learn, over time, to perform a version of yourself that the room can understand.
Eventually you discover the word for it: masking. And masking isn’t lying in the dramatic sense—it’s translating yourself into something more socially legible, sometimes for comfort, sometimes for safety, sometimes simply because you don’t want to be misread. But the cost is real. If you do it long enough, you can become fluent in being acceptable and less fluent in being yourself. You can begin to experience your own natural state as something that must be edited before it can be witnessed.
I think about a moment at university that crystallised this for me in a way that felt both tender and unsettling. I was out with friends, socialising, doing what I did in those years: showing up, participating, contributing, laughing, holding the thread—until the accumulation reached its limit.
And then, as I often did, I stepped away from the group and went outside by myself for a while. It wasn’t a dramatic exit. It wasn’t a statement. It was a pressure valve. It happened often enough that people started to treat it as a quirk, the way you accept that one friend always needs a breather. It became “normal” to them, which is almost funny, because for me it was not personality—it was regulation.
On one of those occasions, a friend of mine, Tori, followed me outside. She said she wanted fresh air too, but it was gently obvious that she was also curious, not in a nosy or malicious way, but in the way kind people are curious when they’re paying attention.
She wanted time to speak to me privately about my autism and the patterns she’d noticed, about the way I moved through social spaces, about the way I seemed to switch modes, about the little strategies she could feel even if she couldn’t yet name them.
And then she told me something that stayed with me: she’d interacted with another autistic colleague who didn’t share the same masking approach I did, and it was only after knowing him that she could see my masking at all. It wasn’t that I was hiding some secret life—it was that I had become good at appearing seamless, good at smoothing the edges, good at making the effort invisible.
Her contrast revealed the pattern, like holding two versions of the same picture side by side. In that moment I felt seen in an unusual way—not just seen as a person, but seen as a person who was constantly managing themselves, constantly balancing between authenticity and acceptability, constantly paying a quiet tax to participate.
When I look back now, what I wish I’d understood earlier isn’t a list of “tips,” but a softer truth: the goal was never to become indistinguishable from everyone else. The goal was to become sustainable.
I wish I’d known that leaving the room wasn’t rude if it was what kept me intact. I wish I’d known that being praised for coping can sometimes become a trap, because “high functioning” often just means “high masking,” and people applaud the appearance of ease without noticing the exhaustion underneath it. I wish I’d known that routine wasn’t something to be embarrassed about, that it wasn’t childish or rigid, but often a wise way of reducing friction in a world that already asks too much. I wish I’d known that rest isn’t a reward you earn after proving you can survive the day; it’s part of what makes survival possible in the first place. And I wish I’d known that it’s okay to design a life around your nervous system instead of constantly punishing your nervous system for not matching the default settings of the world.
Autism is often framed in extremes—either tragedy or superpower, deficit or gift, burden or brilliance—and my experience has rarely fit cleanly into those narratives. It has felt more like living with intensities and trade-offs: a mind that can lock onto ideas and see structure where others see mess, alongside a body that registers the world too sharply and too continuously, alongside an emotional landscape that sometimes arrives without subtitles, alongside the strange social labour of appearing “fine.”
There is grief in that, at times, because it means you can’t always access the world the way others seem to access it so casually. But there is also clarity in it, because it teaches you—if you let it—to honour what is real rather than what is expected.
And if there’s a final note I keep returning to, it’s this: you don’t have to earn your right to take space. You don’t have to justify every boundary with an essay. You don’t have to become a perfect performance of normal to deserve belonging. Mask if you must. Learn the scripts if they help. Survive the rooms you need to survive. But keep a room somewhere—inside your day, inside your life—where you can take the mask off without consequences, where regulation is allowed, where your natural rhythm isn’t treated like a flaw. Not because you are broken, but because you are real. And real is not something you should have to edit into existence.
