To the person who will assess me for autism
A letter I never intended to send
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This is a letter I never intended to share. I never sent it, nor expected I would. But prior to receiving my formal autism diagnosis last year, I grappled with a lot of anxiety about whether or not my assessor would hear me, trust me, and believe me. I wrote this letter then, before even meeting her, as an exercise in self-expression, and as a way to sort through my own thoughts, fears, feelings, and history. But upon finishing it, I thought perhaps there may be some value in sharing it with the world—in connecting through these stories, whether they be familiar as your own face, or utterly foreign. So here it is. I wish you warmth and wonder as you read!
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To the person who will assess me for autism,
As a part of my livelihood, I write a newsletter called The Daylily. I named it for the flower, representative as it is of the goodness that comes to us quietly, easily missed and here only for a short time. Its description reads, “a reminder of the small, temporary beauties that make life meaningful.” Since seeing my grandmother’s sweet and spiritual connection to the daylilies growing outside her window in hospice, they’ve been among my favorite flowers, a connection to her memory.
We moved into a new house at the end of last summer, and there is much about the landscaping I’m eager to change. Yesterday I had some people by to dig up ribbon grass in our garden. I suspected some neighborhood cats were hiding in it, preying on our squirrels and birds. I advertised on Facebook Marketplace in the morning—free to whomever will come dig it up! A family came out that afternoon. While they worked, I gestured to some other grass growing along our fence. I told them they could take that too if they wanted.
“You don’t want your daylilies?” one replied, aghast. I quickly changed course, offering them only one or two instead (and this only as a way of backpedaling as politely as I could). Of course, I do want my daylilies. But I have not lived here long enough yet to have seen them flower. I didn’t recognize them.
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I write to you now because, sure as those daylilies are daylilies, I am autistic.
I have no doubts about this, though I’m not sure that’s acceptable to say. But I have spent my entire life attuned to myself. Exploring my inner landscape. Unlike the garden in my backyard, I know very well what grows here. I have paid careful attention through changing seasons, in and out of bloom. I have watched, wondered, learned. I know this world now, know all its parts by name.
I don’t know what I might look like to you. Or to anyone, really. Whether my autism appears like flora in bloom, easy to recognize, even for beginners’ eyes. Or perhaps you are a seasoned observer who (like those practiced gardeners) can identify what grows even in the absence of its flower. I don’t know whether you might, by my outward appearance, mistake me for ribbon grass and send me away.
I am autistic, and this is not (as one therapist said) “a concern.” Nor is it not a question. I have wondered, read, studied, pondered, doubted, and learned. I am known to myself. I come to you not as a question that needs to be answered, but as an answer that wants to be believed. I am hopeful that you will see me and believe me. I don’t need validation to ease anything unsettled in myself. But, oh, with so many before who loudly declared me weird and wrong, too sensitive and too emotional, it would be nice to hear someone finally call me what I really am.
Perhaps this letter is superfluous. I’m not sure, I’m hardly ever sure. But after thirty-odd years of struggling, trying, begging, failing to be understood, of course I wonder if I’ve simply failed to explain myself. Maybe if I just said a little more, said it better, said it right, said it completely, those who have mischaracterized me would finally nod their heads in understanding.
Words come slow to my mouth but easy to the page. I am afraid of not being able to say everything I need to say to make a case for myself, afraid of dismissal on the grounds of insufficient evidence, afraid of words catching each other’s edges in my mouth and clogging me up like an old copper pipe.
So, just in case, I will write.
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Long before I thought to call it autism, I explained my experience of the world like that scene from A Christmas Carol—poor Ebenezer, standing in the snow outside a brick house. Through its window he sees happy people gather in a golden glow. He must be so uncomfortable. Some prickly bush at the back of his legs, damp socks, the tepid moisture of his own breath coating his chin at the frost-licked glass. He looks on the long, full table as friends enjoy a meal together. They laugh, tell stories, are nourished. He is so near, so close to feeling the warmth of a fire and a full belly and a cheerful embrace. And yet he watches from the winter-dead garden, cold-nipped, shrub-bitten, and alone.
This is how I’ve felt. Just barely outside that soft place where people seem to so effortlessly gather. I’ve turned up to the party to realize I wasn’t invited only when I knock and no one answers. Or when they open the door with wide eyes and a tight smile, say come on in, but when I do, I see no place set for me. So I spend fifteen minutes perusing the bookshelf before making my excuses and heading back outside. At least there my discomfort isn’t exacerbated by anyone else’s.
It’s been confounding, and still is, trying to discern my place with people. Trying to show them how much I care without crossing into the world of the weird. Trying to make them laugh when the line between with and at has always been smudged and unclear.
I struggle to look back on past manifestations of myself. My wife wants to look at videos from early in our friendship, to my mid-twenties when I let other people choose my clothes and do my makeup. Back when I performed a convincing extroversion and went on dates with boys. No, thank you, I tell her. I don’t want the humiliation of seeing myself try so hard now that I know how badly I missed the mark.
It’s painful looking back further too—to childhood, adolescence, early adulthood. To my fifth-grade class Halloween party when I came in a costume I didn’t know was too childish until I entered the room wearing it. To the times I wrote letters or bought gifts for people I wished might be my friends, not realizing this was more intimate than circumstances called for until I placed my offering in their hands.
I’ve been laughed at and lauded, often in the same breath. This makes for a complicated relationship with nostalgia. I thought it was funny, ironic, charming even, to come dressed as a Jedi to my high school’s semi-formal dance. Someone wrote an article about it for the school newspaper. To this day, I’m not sure whether it was making fun of me.
I later joined a culty church in Hollywood that demanded a great deal of conformity. They told me early on that my self-presentation wasn’t up to snuff. Even as a gifted musician, I couldn’t be seen on stage like that. I spent three years and a lot of money I didn’t really have trying to meet their ever-shifting standards.
I thought I was doing quite well. Then one day from the pulpit a pastor used me as the brave example of someone who “doesn’t care what anybody thinks!” I smiled and laughed like I was in on the joke, all the while wondering what I didn’t know I wasn’t doing.
I was relentlessly teased for my clothing. Perhaps that was it. A friend threw my sweater in the garbage. I found out days later. She was kidding, or she was doing me a favor. Either way, it was gone. They said I am ugly but could be pretty. No, I am pretty, but wouldn’t be single if I wore better clothes. No, what I’m wearing is fine, but I’m too intense, and can I tone it down? They’d solve one problem only to discover another. The bar moved constantly.
People with ideas of who I could or should be got me dressed-up and dolled-up, and for some reason I accepted this at the time. But even for all that effort, they could never make me un-myself enough to be truly embraced. I was potential and sabotage. The bright new canvas and the stubborn stain on it. Time and again, I was a problem with a thousand contradictory answers. I think of the old Buddhist folktale about the blind men and the elephant. (I am the elephant.)
I was told I should cry less but be more open. I should try harder, and I should not try quite so hard. The “healthiest” version of me is the more apathetic one, someone actually said. It makes me look so easygoing, so much less bothered, when I do things I just don’t care about. I couldn’t stop my longing, but I learned if I chipped away at my edges long enough, I could bury it under the rubble.
And I tried.
I tried for years. But the demands on my mind, my time, my body, my feeling—they were more than I could juggle, and I was out of breath from the effort. After a particularly traumatic social season, I spent a year with a mysterious illness. I missed months of normalcy and lived with chronic, clawing abdominal pain. When I wasn’t asleep by 8 o’clock, I would cry from worry, fearful my time to rest was slipping away faster than I could absorb it. I now recognize this as autistic burnout. It is backbreaking work to keep up with expectations communicated in a language I don’t speak.
I could feel it before I could name it. Something wasn’t working.
So I let my social circle get smaller and smaller. I moved farther away from the bustle of noisy big cities. I took on less responsibility, said yes to fewer events. I took longer walks and wrote more poetry and started feeling attuned to my own rhythm. I began excavating, recovering my longings. I came out and married a woman who embraces the whole of me. I had a baby. I put my softest clothes on. I began building a life to be content with. I began seeking peace wherever it can be found. I started sitting quietly with the person I am. The one I have always been.
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As a child, I’d forget my shoes at my best friend’s house several times a week. I infuriated my mother the many early mornings I didn’t have shoes to wear to school. I loved being barefoot. I would slip my sneakers off whenever I could to feel the grooves in the pavement on the soles of my feet, the dew of the grass on my ankles. I explored the world this way, feeling weighted, so connected. Real. I’d sit alone by the pond and watch the ducks and the herons catch fish, the geese flap their mad wings at passers-by. I’d squat to watch tiny turtles as they swam in the shallows. I’d walk the path from one end to the other, eating candy cigarettes from the general store and singing aloud.
As I grew older, those moments of rootedness grew fewer and further between. I still felt it when I had music in my headphones and the windows down in the backseat of a moving car, or when I sat beside the bay alone on a quiet, chilly Michigan morning, or when I walked through the forest and listened to the trees and the birds conspire. I felt it in the early mornings when I sat in the candlelit dark and thought about God, back when that’s something I did. When I played guitar and sang songs. When I handwrote poems in my journal.
But between those moments were days or weeks or months of feeling adrift in a world that didn’t make sense. I could almost see the connective wires running between the people around me—sending data, making bonds, linking them to one another and to some indiscernible source—but I couldn’t seem to plug myself in. As the social pressure around me increased and I put greater effort into dialing into this invisible network, the fuzzier things became. The static around me was loud and harsh and played tricks on my eyes. I’ve lived like this for decades. I’m exhausted.
In March, I picked up a book by an autistic author—Katherine May’s The Electricity of Every Living Thing. I was only a few paragraphs into the Author’s Note when I sensed I was on the cusp of a revelation. It was a twinge of recognition, a mirror found in someone else’s words. I had never heard someone describe feeling different in a way I recognized. And here it was. Page by page, I followed her journey into self-discovery like a trail of Reese’s Pieces through a dark wood. Then I picked up Hannah Gadsby’s Ten Steps to Nanette, Joanne Limburg’s Letters to My Weird Sisters, Devon Price’s Unmasking Autism. I read books and more books, sought articles and podcasts and threads. I chased stories. I saw… myself.
I know this may not strike you as anomalous, considering we are in the age of relatable memes and “it me.” But I have very, very seldom seen myself reflected from without. And this seeing, for me, was illuminating. A dawn broke in me, and in the new light I found hidden doors and secret tunnels, answers to long-asked questions etched into the walls. I placed my palms against them, ran my thumbs along the scrawls and scratches. After all these years of grasping, finally something I can touch.
I have long ached to feel real again. I don’t mean sincere, be yourself, I’m the real deal real. I mean Velveteen Rabbit real. Cold air in my lungs on the first proper fall morning real. Dipping my feet in Lake Michigan real. Snowfall that sticks real. Barefoot by the pond with a heron and a candy cigarette real.
I want, have always wanted, a life I can wrap my arms around like a smooth old sycamore shedding its bark in late summer. Not one I pass through like fog.
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I know some will say autism is the fog. I will disagree.
In fact, I will say the opposite. This new self-knowledge is like a warm sun rising over the morning brume, clearing the way, bringing the world around me into sharper and more vibrant color. For all the years I’ve spent floating, detached and indefinite, recognizing myself as autistic has been enrooting. A homecoming. I am returning to myself.
I am sensitive, sometimes debilitatingly so. An exposed nerve. I would not change this. It’s why I care about the living things around me. It’s why my garden is full of bee habitats and bird baths and pollinator plants. I am absorbent. I would not change this. It’s why my house is full of books, my mind is full of information, my body is full of feeling. It’s why I appreciate silence in the way I do. I am curious, analytical, serious. I would not change this. It’s why thinking is so much fun, why my friendships are deep and full of conversations about unanswerable questions I can’t help but ask.
I am a little lost a lot of the time. I don’t think I’d change this either. The world is a marvelous place, and from a bit off-course I get a spectacular view.
I stand in the woods and wonder at the living things I pass. The way honeybees communicate and collaborate with their colony is astounding. They’re a clever, coordinated species, and together they do so much good for the earth. But the leafcutter bee is also a marvel. She works quietly, solitarily, building homes from flower petals, doing good for the earth too as she goes about her simple, necessary tasks.
And it would be a delight to be a sparrow among sparrows, flitting about in the treetops, singing and bickering and playing, flying in easy formation, guided by sharp and ready instinct. But perhaps it’s more like me to wish to be the tree itself. Growing slowly, quietly, communicating purposefully through sturdy roots and soft earth.
Nothing in this forest is deficient. Nothing at all.
(But I’d condole with the tree that was reviled for not being a sparrow instead.)
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I am autistic. Sure as daylilies are daylilies, I am.
I don’t know whether you will give me the diagnosis I’m asking for. I hope you will because I want to be understood. I want to be believed. But either way, I know it’s true. And I know what it means for me is good.
It means I’m reconstructing, for one. Some big changes, like taking the pressure off myself to be the pastor’s kid I was, eager to perform my social duty for the so-called greater good. I care that people feel safe and comfortable. I always want to be kind. But I won’t strive to be the most welcoming person in the room today. I don’t want to be gregarious.
I’m reframing too. Suddenly those photographs of a younger me are not merely a humiliation, but context, feedback, wisdom from the past. Suddenly so many times I’ve been misjudged were not because I was flawed, plain as that. They were the results of mutual misunderstanding, speaking together in a language we thought was shared but was, in fact, not.
I am also fine-tuning. I am turning down the noise where I can, literally and figuratively. I am learning to notice my body when she tells me my surroundings are too loud. I am finding ways to kindly step away. To let my senses settle, like ripples do in a deep pool.
I am making space for myself. Now I wake at dawn and let the quiet of the morning seep into my skin. I sit on my porch in the brisk purple air and let the chill tell my body I’m here, now, feeling, learning, discovering. I sip the coffee I poured with my hands, and my belly is warm. A squirrel next door makes an angry fuss, and I feel the sound like wind on my face. A cheerful, chatty goldfinch lands at our feeder as mourning doves coo from the grass and robins whistle in the trees. I feel their music in my chest like an ache, like delight. A gentle wind sighs, and I feel myself breathing more consciously. Through the open door, I hear my son’s voice. It carries down the stairs. He is singing to himself in his crib, and soon he’ll be calling for us, ready for the day. I take in the quiet for another moment, letting it center me, soothe me. Then I place my bare feet back on the cool ground and smile.
I’ll be ready too.
About the Creator
t.r.h. blue
torri r.h. blue is a writer, poet, artist, photographer, and advocate. She writes poetry from West Michigan, where she lives with her wife, Alex, and their son Auden.
www.notesontheway.com
Comments (2)
Thank you! I find myself in a parallel dilemma, with all its pains and joys: feeling like a stranger at the banquet. Very inspiring--keep writing! 👏
This is beautiful! What an amazing journey of self discovery and self appreciation! Thank you so much for sharing and I wish you continued joy as you continue to learn more about yourself and fill your time with the things that bring you joy and comfort ❤️