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LETTER: What is (my) autism like?

Letter writer says most people would not guess that he is neurodiverse until they spent a day with him, and even he struggles at times to understand ‘his autism’
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EloraFergusToday received the following letter from reader Corey Parish, a social service worker and pastor at Grace Christian Fellowship, for World Autism Awareness Month in April.

A Saturday morning in late March saw me perched on the front steps of a small stage with a guitar in hand. I preferred that spot to the alternative of standing centre stage, where dizzy spells and stage fright get the best of me. Though I also wanted to be closer to the flurry of small hands and feet taking shakers and bells beside me to join in the music.

We were gathered together for a cleverly designed egg hunt for children and families with special needs, providing me with the unique experience of being part of the majority. I am autistic, and so were many others in the room that morning. Granted, as I scanned the sometimes bouncing, running, and vocalizing crowd around me, I felt a tinge of ‘otherness’ even then.

You see, my autism doesn’t stand out quite as much, nor would most people guess that I’m neurodiverse (until they spend a day with me!). And even I struggle at times to understand ‘my autism’ among the array of children and adults exhibiting far more ‘obvious’ signs of our spectrum. As I sat and strummed, I pondered, “What is my autism like? How would I explain it to others?”

What follows is a small attempt to give words to those questions.

Let me start with this exact moment: the moment when I begin to write and every single feeling bubbling in me no more than five minutes ago now seems so far away. Or else buried down in some recess of my mind that I can’t get back to – at least not voluntarily. This is one of the first things I notice most days: there are a thousand bubbles in me, but when it comes time to address them with care and precision, they pop or float off before I can get to them.

I know they will bubble up again, but I also know that when they do, the familiar popping and floating will carry them off before I can fully describe their roundness, shine, scent, and clarity. This is part of my experience. There are so many bubbles but so few moments I can capture and keep them. So, I begin at this moment with an endless cycle of bubbles.

Bubbling. Popping. Floating. Bubbling. Popping. Floating

I don’t need to look outside this moment to notice something other than bubbles. Pinpricks are also here, all around me. They come as unexpected creaking, voices, lights, textures, and even laughter. Laughter of all things!

It’s the surprises that prick against an otherwise manageable moment. Others describe the “loudness” of the world, and I certainly agree. But I would qualify the “loudness” with “sharpness” in my case. It’s a sharp loudness that comes unexpectedly. A light I wasn’t expecting to be so bright – or so dim. A voice I wasn’t expecting to be so loud – or so quiet. A touch I wasn’t expecting to be so hard – or so soft. Each one is another pin causing recoil, retreat, and recentering.

Pricking. Recoiling. Pricking. Retreating. Pricking. Adjusting

But then, what’s on the other side of this moment? To be honest, I’m not sure. But it often feels like the edge of something — something unknown. That edge can feel exciting sometimes, but it is mostly very frightening. I don’t quite know what pinpricks or bubbles are waiting. Just that an edge stands just before me, and, with it, the chance for pins and pops I will feel but not capture.

Feelings to be overwhelmed by but watch float away before my words can touch them. Where the unknown looms, familiarity helps.

Returning to the same edges that have proven not-so-pointy, where similar bubbles form again and again, allows me to recognize and say something about them. At least these pinpricks and these bubbles are known, manageable, and survivable. But what about all those unknown edges? They take a lot of careful steps.

Tiptoeing. Preparing. Imagining. Visualizing. Rehearsing…

When one of the new edges turns out different than expected, their sharpness and clarity are startling but sometimes strangely comforting. At least then, I’ve discovered something new: and edge and ground to return to.

But then, when an old and well-trodden edge turns out different than expected, that unexpected sharpness pricks and pops and causes bubbles I can’t begin to capture. “This is not the way it’s supposed to be! This edge was not supposed to be new! It was supposed to be the same as before, inviting me from one moment to the next without pricks and pops.”

Retracing. Remembering. Questioning. Grasping. Re-rhythming…

Bubbles, pins, edges, and questions. Reaching, recoiling, rehearsing, and grasping. Sometimes finding words, softness, success, and sameness. Often left wordless, pricked, preparing, and arhythmic. Avoiding new faces, sounds, eyes, and expectations. Walking in circles and looking for someone sitting still, whose bubbles float openly and slowly enough that I can see them, step over their edge and learn to remember them, return to them, expect them, and share rhythm with them.

Seldom finding this in others, and often settling for other things – books, chairs, instruments, work, writing, and river trails. But even the trails change, and so do the rivers beside them. So I keep speaking without the bubbles in hand, retreating where pins prick less, rehearsing at edges I’ve learned well enough, and hoping I am enough – but not too much.

These are pieces of me. And I get the sense I am not so unlike others who share my experience of the world.

Corey Parish