I’m ready, I think, but I have no idea where to begin. No “red thread” of narrative has revealed itself. The topic overwhelms me; it will take multiple essays just to introduce, and there’s no obvious starting point that I can see.
In her 2014 memoir, Cynthia Kim wrote that since her diagnosis, “In a way, I’ve been forced to relearn how to be me.” That feels right. The facts of being me have not changed, but since my diagnosis, the meanings of those facts have undergone a great shift, “a sea-change, into something rich and strange,” to quote famous lines from The Tempest.
I still don’t know what to make of this shift, now a year after diagnosis, a year of reading about the autism spectrum, talking with multiple therapists and a small inner circle, and considering this all in written words that will remain private.
Speaking for no one but myself, I might say that the one constant in the autistic life is alienation. Maybe I should start there. And for me, alienation has almost always been accompanied by symbols. So. Alienation and symbol.
It’s rare that I can forget how different I am from the people around me and how much that has hurt at every stage of my life. When you have a neurobiological disorder that affects just 1% of the world’s population, you will feel unlike most everyone you come across almost all the time. And meaningful relationships—those time-honored antidotes to alienation—can be, in a cruel irony, difficult for people on the spectrum to achieve and maintain per the very nature of our impairments.
How, then, am I alienated? Let me count the ways.
Social settings, from the simplest hello to a small dinner to complex, manifold gatherings full of strangers, can induce wildly disproportionate levels of anxiety. I’ve learned to fake an appearance of relative normalcy but I’m often crawling out of my skin—not because I don’t want to be there, but because I don’t know how to be there.
My senses are unusually deft, and combinations of sounds, smells, and sights can put me into sensory overload quickly. I may get confused or say something truly awkward. I can almost never make eye contact, or, if I can force it, I’ll drop it at a weird, jarring moment. If you see me someplace and call out my name—or, God forbid, touch me—I will be startled to an unusual degree and probably not process who you are for a few seconds, leaving us both embarrassed.
If I can bring myself to enter into conversation, I may fidget and writhe around, my head and back and shoulders saying I’m not interested, I’m angry, or nature is issuing a strong call. I’ll try to hide my impatience with small talk and polite banter; my impulse is to cut to the things I obsess over, without transition: What are you reading? What are you writing? What moves you? Say things that are true and beautiful now. Be what I need you to be, not what you are. Listen as I prattle about obscure big band era musicians or the history of baseball. And if you hurt my feelings I may retreat into absolute silence for long stretches.
If I haven’t pushed you away yet, I might when I blow on my knuckles, one hand at a time, left then right, then tap my legs or chest with slightly closed fists. This one I will try, try so hard, to suppress. But it might happen. I understand if it freaks you out—it freaks me out, too.
I don’t call my family or best friends. I don’t answer the phone when it rings.
I can’t “just relax,” as I’ve been told to do my whole life. I’m generally unsure how to engage with anyone; I use intellect and imitation in place of the missing intuition, leaving me mentally and emotionally exhausted.
I carry an acute envy, and sometimes hatred, and sometimes admiration, for those who navigate the social spheres fluidly, easily, naturally—anyone who becomes energized by it, not depleted and demoralized.
For me most social interactions are like putting together a puzzle where the pieces are many and tiny; where you get the feeling early on that any number are missing; where the sky in the corner—all the pieces form white clouds and look exactly the same—has somehow grown larger in the time it took you to fit together a very obvious section of the border (for which you felt unduly proud).
I have no spatial sense. I hate puzzles. So I often give up or never begin.
It’s reasonable, then, that writers on the spectrum—no matter the ultimate subject matter of their work—tend almost universally to create metaphors, symbols, and narratives that represent or explore profound estrangement. These symbols bring some order and meaning to the loneliness of being on the outside, misunderstood, and often rejected.
One of the symbols I developed in my first book—long before I was diagnosed—is a small and odd fruit tree trying to survive in a cold climate. When I was a kid, a single plum tree graced the edge of my grandparents’ field on Vickerman Hill Road, high above the Mohawk River Valley in upstate New York.
Though not unheard of, any fruit tree other than apple is certainly delicate for the place, an idiosyncrasy in the world of harsh Leatherstocking Country winters (California dominates plum growing in the US).
My grandparents’ plum tree died. I loved that tree as one loves and admires the unusual, the improbable; I missed it when it was gone.
To unpack the symbol, let me talk briefly about men in the Mohawk Valley. My dad worked at the Union Tool Company, in a forge by an open fire, making pitchforks and snow shovels and other implements with clear and practical purposes. He came home with burns on his calloused hands.
Most of my friends’ dads worked at the Remington Arms Company, the longtime largest employer in the Valley. My uncles took apart and rebuilt cars, trucks, motorcycles, lawnmowers, furnaces, hot water heaters. This was the primary milieu of male identity in my home place. Though I played a few sports at an acceptable level and had some friends and went to parties, I knew from a very young age that I was not like everyone else, and that I would never grow up to be like the men I knew.
There was something deeply different about me, something I could never quite put my finger on. Like the tree, I was out of place, didn’t belong. I would chalk it up to my sensitive artistic temperament; I did, after all, become a poet. But with my ASD diagnosis, the symbol of the plum tree took on another layer of meaning.
Though it began as a personal image, I hope it has some universal import. I see the next generation, some of whom by temperament, interests, sexual orientation, physical or mental or neurobiological matters, or other circumstances may find themselves alone in the Valley like a plum tree in a field. They will not catch footballs on the gridiron to their fathers’ delight; they will not squeeze into booths at the pizzeria; they will not make out in Chevys by bonfires on the back roads. Maybe the plum tree can stand for them, too.
I continue to read clinical books on autism and memoirs of lives lived on the spectrum. As a poet and fiction writer, one of the most important studies I’ve found is Writers on the Spectrum: How Autism and Asperger’s Syndrome Have Influenced Literary Writing by Dr. Julie Brown. The authors Brown studies, were they alive today, could easily be candidates for Autism Spectrum Disorder consideration, as the records indicate clear correlations between autism and the details of their lives and work.
I’m not the least bit interested in defending the author’s inclusion of this writer or that; the obvious fact is that we’ll never know for sure about any of them. (But read the book in its entirety before commenting.) Yet having looked at the evidence, it is at the least very interesting to me to consider Yeats, Dickinson, Lewis Carroll, Melville, and others in light of autistic characteristics. Their stories are filled with awkward social moments, eccentric and obsessive behavior, retreating from sensory overload, and, sometimes, entire lifetimes of loneliness.
Brown discusses the constant found in the writing:
…a theme of alienation prevails in these stories. [The authors] know that something about them is different. They feel that there is something wrong with them. They may or may not try to fit in, but if they do try to make a friend, they find that it isn’t easy. There’s no ignoring the messages of loneliness, sadness, or despair…One thinks of Hans Christian Andersen’s cold, wet, frozen characters struggling against the elements with no one to help them. One thinks of Bartleby, dying of a broken heart, all alone, in prison. Or Alice [in Wonderland], swimming in a lake of her own tears. One thinks of Sherwood Anderson’s sad, oddball characters sitting by themselves in dilapidated shacks and upstairs apartments. The underlying message, again and again, is this: I am different and the world has rejected me.
Ironically, this passage gives me a feeling of warmth and camaraderie, assuaging my own alienation in a peculiarly autistic way: though we’re clinging to narratives with themes and symbols of isolation and despair, we’re doing it together—if not actually together. We take refuge in images which become supremely important to our thinking, be it Dickinson’s small boat lost on a vast sea or Yeats’s famous lake island, a trope suggesting, among other things, apartness. For me it’s a plum tree.
Still, while I find consolation in the symbol, I don’t want to cling to it or see it in merely one dimension. I want to work toward greater hope. Perhaps I can come to see the very planting of the plum tree as the optimistic gesture it surely was—an earnest and intentional attempt to cultivate something fragile, almost decadent, to counterbalance an exacting landscape. Those of us on the spectrum will always deal with loneliness and alienation. Over time, though, maybe we can nurture the space to survive, even thrive, wherever we’re planted.
For my mother, the directions were gospel; for my father, suggestive. He would stare at the highlighted segment of roads, and then improvise to find alternative routes to our destination. Ones that might take us closer to a historical site or through a “scenic byway.” To my father, the maps could be both guide and reference.
I've had climate change anxiety since college, but bringing a baby into the universe intensifies it. My anxiety no longer only extends the length of my lifespan. I tell my husband Taylor I regret having a child because I can't stand the thought of Jackson in pain. He holds up our son’s wiggly, plump body. "You really wish he didn't exist?"