An Autistic Considers Impermanence
Accepting a life shaped by change, loss, and death.
A partner and I have seen each other for going on three years. At the outset of the relationship, our sexual connection was the strongest I’d ever known. We’d fuck five or seven times in a single day back then, pulling one another away from the kitchen stove or a work meeting to collapse into the bed, dampening the sheets with our sweat.
We would have sex for hours sometimes, our bodies drilling away and ignoring the leg cramps, my mouth pressed into their lap for whole run-time of Morbius. It was kinky, all-consuming sex, during which we traded words about possession and eternal love.
It’s not like that anymore. Few relationships are for long. Even back then, I realized what a blessing it was for the intensity to last more than a year, and I recognized the practical limits of our 24-7 power dynamic. In its time, the relationship settled into something far more comfortable and realistic.
We became more independent, spent time apart and then rejoined one another, established a pattern of salmon and broccoli for dinner on Monday, and Dunkin Donuts for breakfast on Fridays. They cared for me after top surgery, and I rushed to the hospital when a student punched them in the face. We played Fortnite on the couch on weekdays evenings and partied at different clubs on the weekends. We were not passionately engulfed in one another anymore.
I didn’t know how to cope with it. I never do when things shift. I observed their every change of breath and wondered who they were talking to every moment they reached for their phone. I imagined the sex they must be having with other people with jealousy, as the intimacy we shared became more sporadic. For a while I had crying meltdowns, draped my body over the furniture in sad attempts at bewitching angles, and picked fights so I could get the reassurance they didn’t want to go away.
One morning not to long ago, I tried recapturing the magic of our early days together because I couldn’t stand the thought of change. I slithered across the bed as alluringly as I could, lavishing my partner’s body with little nips and kisses as they slowly woke up. My mouth worked its way all over their torso, taking ages to slide down between their legs.
When we used to fuck, my mind would spiral into some nether space where our souls appeared to meet. Hours passed like minutes, and without any pain or concern. It wasn’t like that this time. The right side of my jaw immediately began to ache. I couldn’t position my arms into a comfortable angle. My tongue fumbled around, spit sticky on my chest. When we finished, we unceremoniously debated whether to clean up the mess with a towel or some used underwear laying on the floor.
I had none of my old fantasies of my partner becoming my forever-owner and purging my life of all complex responsibility. The sex wasn’t magic, it was just a fumbling on the bed that delayed my morning workout.
Was the most satisfying sexual period of my life already behind me? And what had I done to kill the chemistry we’d had? Was it something I’d said, some change in my body or my presentation? I dragged myself around town despondently all day, mourning what had been lost. On top of the sorrow, I also felt cheated — as if the past had promised me a carefree, passionate life and then taken it away.
I just wanted everything good to last forever, and for nobody to ever change. Was that too much to ask?
Autistic people famously struggle with change. A disruption to our daily routine can provoke a shrieking meltdown; when a dear friend moves away or a favorite shop closes, we may be laid out in despair for many weeks. The non-autistic people around us call us rigid because we desire clear expectations in a world where nothing is ever spelled out, and lash out when those expectations are violated by overlong meetings, canceled flights, and breakups.
We don’t resist change because we enjoy people being frustrated by us, or because we’re pathological. We do it because we process the world in a slow, effortful, bottom-up fashion that easily leads to exhaustion and overwhelm. Many non-Autistic people can pass through their days on an efficient sort of autopilot, hopping on the bus, rushing into the coffee shop, and blowing through meetings and appointments without attending to everything around them. They already know what to expect from most situations, and all the small details that clash can fade to the background.
Autistics lack that kind of adaptive filter, and so we take in many of the sensations and cues others easily ignore. A task as simple as a trip to the grocery store is vastly more disruptive and unpredictable to us than it is to many non-Autistic people, who usually won’t be bothered that a cereal they don’t even eat has been placed somewhere new on the shelf. A broken overhead light, a change to the cleaning solution used on the tile, a different way of queuing for the self-checkout line — we tend to notice these changes, and be disrupted by them, because it’s novel data we must process anew. And so we reach out desperately for some source of constancy.
I have never been good at handling changes, particularly in my close relationships. Like many disabled people, I use my loved ones as an anchor to help me feel safe in the world. But when even my anchor proves to be a complicated and ever-changing human, I feel exposed by their unpredictability, and then I flip out.
When my last serious relationship began to change, I wasn’t even interested in coping with it. All I wanted was to bring the past back.
My boyfriend had been a gentle, self-effacing boy of twenty-two when I’d met him. But a decade of life had rendered him cynical and world-weary, just as it had made me neurotic and mad. I stared at his sleeping body e each aning, willing him to become the lovestruck, naive person who’d smile in astonishment at my presence every morning when he woke up. In the privacy of my mind, I raged at him for taking that sweet young man with a surfeit of free time away from me, and replacing him with a working adult.
I kept banging my head against the problem of how we had changed and finding no solution. Maybe if I grew my hair out long like it had been when he met me? What if I wore that old dress that used to hug my hips? If we played the video games that defined his childhood, would he feel young again around me? One night before the end, I cried at him for hours while he stared across the kitchen table, dumbfounded.
I just feel like things are different, I said, as if that were the greatest tragedy in the world. Things are different, he said tentatively. But they are good, too.
I ended things not long after.
In season 4 finale of Mad Men, a newly remarried Betty Draper complains to her ex-husband, Don, that her new marriage isn’t all that she hoped it would be. “Things aren’t perfect,” she declares to him tragically, as if it were ever possible for things to be.
Betty feels that she is owed perfection, in much the same way I imagine I am owed permanence. We both upend our lives in the pursuit of that impossible ideal, only frustrating ourselves with our outsized expectations. And in our lowest moments, we punish other people for failing to live up to our earlier dreams.
I am always clutching to my idealized reality firmly with both fists. Whenever my hair looks good in a photograph, I immediately get to stressing about the fact that my hair has already grown some imperceptible amount since when the image was captured. Then I cut it, hoping to restore it to its former perfection — and my head gets completely mangled by my clippers and shears. I deny myself my favorite foods and drinks sometimes, knowing that the meal will too quickly be over. The moment someone begins to love me is when I start picturing them dead.
Many late-realized Autistics develop relational patterns that therapists label codependent, controlling, or Borderline. I wonder how much of our supposedly dysfunctional attachment can be attributed to our desire for constancy, and our attempts to impose stability on a reality that forever shifts. For Autistics, most social interactions are mystifying and seem to play out on their own, largely beyond our control. Possible rejection hides in every corner, much of it unforeseeable to us.
Doesn’t it make sense we’d try to control what we can?
When a partner remarks that he’d like to get a bigger mattress, I want to chop off the sides of the bed to force our bodies closer. I want to hiss at every new person that enters the friend group to scare them off. Though all my queer loved ones are enlightened polyamorists, whenever someone I love starts texting someone new I fantasize about slipping away with their phone in the night, unlocking it, finding the new contact, and blocking the threat into oblivion.
I don’t do any of this, of course. But in my selfish, rotted heart, I want to be like Hannibal Lecter, drugging his patients and hypnotically conditioning Clarice to be in love with him. When I learned that Jeffrey Dahmer drilled holes into his lovers’ heads and filled the cavities with hot water and bleach to keep them from abandoning him, I could kind of understand it. And I hated myself for it.
I don’t actually have the stomach to be violent. My war with reality happens only inside. Besides, I know that if I were actually to try and control another person’s life, it would just send them running away. I learned that the dozens of times that I completed boyfriends’ homework for them, paid their rent, wrote cover letters for friends’ job applications, and inserted myself into fights that weren’t mine. I have tried to pull at others’ strings to keep them all happy and around me, but it only ever sent them running away, sad tangles of threads left round my fingers.
People like me must be why Autistics have a reputation for being cold-hearted, unfeeling, and unable to recognize the interiority of anyone else. I’m an anarchist in principle and a lover of my own freedom, so I would never wish to impose my will onto another person. I am terrified of the urges for control and permanence that lurk inside me. I’m afraid of where they might take me, and so I never give voice to them — In fact, I rarely give voice to any of my desires at all.
I let people do what they will without ever voicing my opinion. That’s the only way to truly avoid becoming the Dahmer in my mind. My method of control is to ask nothing, and give everything, hoping that one day another person will notice and choose to be devoted to me.
But even then, they’d change on me. It’s in the nature of all living things.
For many years, psychologists believed that Autistics failed to form enduring relationships because we lacked any social drive at all. According to Social Motivation Theory, Autistics are “insensitive” to social cues because we do not prioritize other people, and do not experience any emotional benefits to socializing. Our problem is not that other people reflexively dislike us, in other words, it’s that we fail to show adequate interest in them.
This theory has been widely debunked, with a massive body of evidence demonstrating that Autistics are in fact profoundly socially motivated much of the time. Many of us ache to connect to others but are unable to because non-Autistics don’t notice or appreciate our attempts. Still, the theory persists, because non-Autistics misinterpret our body language, eye movements, and conversation patterns as signs of disengagement, even when we’re trying to open up to them as strongly as we possibly can.
The scientific literature on Autism is filled with these kinds of projections on the part of neurotypical people. The non-Autistic find our “flat” voices dull, so they assume we must not have emotions. When we “info-dump” about our favorite subjects they find it boring, so they conclude we haven’t made any real attempt to connect. And they cringe at our chewed lips, swaying bodies, and stretched-out, comfortable clothing, turning away from us while complaining we aren’t giving them enough attention.
We remain so isolated that even our loneliness is not seen.
How do we cope with our fears of abandonment? Many Autistics do so by clinging to every connection that we can get, no matter how costly. Aaron is an Autistic server who makes very little money, but he tells me he’s generous to his very last dime — all with the hope that it will keep people around.
“It was my friend Julia’s birthday last month, and I bought everybody in the party drinks. Shots all night long,” he says. “My bill was five hundred dollars. I had to pawn my stereo to make rent.”
When I ask him why he’d give the last of his savings away, he says, “I want people to like me, and be the life of the party. Julia’s friends are too cool for me. I try to make myself useful, keep the vibe up.”
Fatima says that for years she ignored the mockery coworkers hurled her way, telling herself that she was “in” on the joke. Surely she was building deeper friendships with them by being so understanding, the thought.
“They made terrible comments about me looking pregnant because I gained weight, and they ask me really personal questions about my childhood and background and laugh at my answers,” she says. Even her boss joined in on it.
Fatima couldn’t stomach the thought of finding a new job, because it would only mean more uncertainty and disruption. “I have to keep the peace. I barely have the energy to do this job, I definitely don’t have the energy to start a whole new life right now.”
Other Autistics avoid confronting change by retreating into fantasy. Luna is a Swiftie, and says revisiting their favorite Taylor Swift songs transports them away from their surroundings. Each track is the same every time they listen to it, the lyrics revisiting familiar subjects and struggles. Even the soundscapes that Swift & producer Jack Antonoff create have striking similarities across albums.
“I can’t bear to think about growing older,” Luna says, “I’m not ready. I still feel like nothing in my life has materialized yet the way it should, but it comforts me to hear Taylor singing about the same things. Taylor says she feels frozen at the age she was when she became famous, and I feel frozen like that, too.”
Like many Autistics, Luna’s life hasn’t evolved at the pace others expect it to. They have no career ambitions, and see no possibility of getting settled down or married. It’s easier to imagine themselves as a pop star crystallized in amber than it is to worry about their future or the demands of her parents, who want her to “grow up.”
Escapism is a common strategy for coping with change among Autistics — still others use substances as their means of avoidance..
“My surroundings right now are generally very tumultuous,” one anonymous Autistic tells me. “[I have a] shaky living situation, et cetera. Getting the same high consistently mimics a familiar environment to me. Even if my external stimulation is in constant flux, my inner goings on remain constant. I don’t recommend this at all, by the way.”
I relate to the avoidant and escapist Autistics perhaps most of all. Many changes feel so unbearable to me that I’d prefer to just shut them out. I can’t tolerate the thought of my mother dying, for instance. It hurts and confuses me to visit home and see a hitch to her walk that wasn’t there before, and to hear a tiredness in her voice that deflates all her old jokes. My grandmother stopped dyeing her hair years ago, and I’m still shocked by the snowy white on her head every time. My fear of what is already happening sometimes keeps me from facing it.
There’s nothing inherently wrong with seeking comfort, of course. But it becomes a problem when the disconnect between life and fantasy gets so strong that the fantasist can no longer process tough facts. Many high-profile Autistic influencers still refuse to acknowledge the genocide in Gaza, for instance, because they worry consuming upsetting news will fray their already tenuous grasp on happiness. Others pretend as if levels of COVID in the wastewater aren’t rising, because they can’t stand the thought of bearing lockdown again.
I’ve lived in a similar way before, suppressing all thoughts of unwanted news and refusing to adapt my life to changing geopolitical realities. It was then that I was actually at my most neurotic, dodging potential threats everywhere that I went. I’ve found it’s far better to let go of my entitlement — to good things, to youth, to eternal life, to permanence — and accept that change is coming for me, whether I like it or not.
I saw a flyer recently for a local queer dance party that read: If you are coming here to escape, your problems will find you again as soon as you leave. The alternative is to choose to stay in reality, and to take action and build relationships in the world I’ve been given, rather than retreating to the one I wish I was in.
One way that I force myself to accept change is by pre-empting it. I start telling people I am 37 mere days after my 36th birthday. I think of death and loss often, mourning them prematurely in my bed. When I share a lovely moment with my family, my mind immediately jumps to the fact that it will end.
Some would call this borrowing the future’s trouble, or worshipping the problem instead of our love. That can be true. But I have always found that when disaster does strike or the end I’ve feared comes, I have mentally rehearsed it and have several contingencies in place. If I get fired, I already know how to file for unemployment. If I collapse into a depression, I already have a few months of blog posts queued up.
Preparing for loss does cause me sadness and anxiety, but these emotions can be adaptive. A life without worry is not my aim. I survive, and I do not believe I am owed happiness, and I have found that keeps me from being frozen or outraged at life when the hard times come. They will come.
I also invite necessary changes into my life slowly. I started taking hormones in tiny doses; it was almost three years before I’d worked my way up to a full dose. I get apartment leases that overlap by a month, eating the cost so I can carry my possessions from one place to the other slowly, in small trips. I never quit a job without having dozens of side-hustles lined up.
These days I also try to find some aspiration that’s worth changing for. That’s a new one for me. But I’ve learned that if I can expend tons of energy fretting about the future and retreating into fantastic worlds, then I can at least try to create some positive vision for my actual life. Instead of fearing an apartment move, I can draw up room layouts and pick out decorations. Instead of raging about travel, I can research the city’s public transit system and find some museums to check out.
Even aging can be planned for and fondly anticipated. I’ve been meaning to read Homestuck for ages. Maybe I’ll finally find the time to do so when my body slows down. I’m always so busy, so frantic and frenetic. Maybe one day I’ll find that a little loss is exactly what I needed.
I can also find gratitude for what I do have, gorging myself on the present instead of trying to lock down the past. Tal, an Autistic bunny owner puts it this way:
“When my bunny was in the bunny hospital, I was really scared to lose her, but I reframed it as, ‘wow, I really care about and am grateful for her, that’s awesome.’ I spent my energy thinking about how grateful I am for her instead of how scared I was.”
When the possibility of change fills us with dread, it’s worth asking ourselves what it is that we’re coveting. And when a terrible loss rocks our world, we can search for what’s precious and fleeting in the new reality that remains.
After our lackluster hookup, I was certain my partner had been just as unimpressed as I was by the encounter, and that no doubt was feeling disillusioned with me. Blasé sex was just yet another source of threat, one more way in which I failed to be worthy of love and would one day be abandoned.
Instead, my partner interrupted me at the doorstep, pulling me in close for a long embrace and a kiss.
“Thank you so much for this morning,” they said enthusiastically, leading us both to the couch. “I really needed that, I didn’t even realize how much. I was so stressed.”
They told me that after our power dynamic had shifted, they’d worried I could no longer see them in a sexual light. The way we used to have sex, they were the God and I was the eager supplicant — but it was hard for them to keep viewing me that way after I’d been such a competent, stable presence in their life. I had lent them so much strength. They’d never been able to be so vulnerable with another person, never told another person the secrets they’d told me. To lose a submissive sexual partner and gain a lifelong friend and trusted advisor was well worth it to them. To discover that we could still be sexual in a more tender and casual way had been a lovely discovery.
They hung off my body then, saying affectionate things — but not of the mind-searingly hot variety they had when our relationship was new. No, this time they just told me how much they loved me, and how much they valued living together, and how delightful it was to keep discovering new ways to be with one another.
With that, all my self-doubts instantly dissipated. I didn’t have to constantly titillate a partner to keep them around me. I didn’t need to reenact our old Tantric, bed-staining sex. I could simply live life as myself alongside them, sharing in meals and chores (and sometimes, orgasms), and however that looked, it would be enough. I could love reality instead of the fantasy I’d been hurting myself with.
My partner loves me as the man who cries easily and leaves snippets of hair on the bathroom floor. And I love them for the way their eyes cross when they get high and start thinking about snacks. We love one another for the conflicts we have weathered, the daily rituals we practice, and the brand-new people that we constantly become.
There is no purpose in chasing after what’s gone. The present is precious exactly as it is — not as an unfaithful copy of the past.
A thing that fascinates me about how I deal with uncertainty is that I'm far worse about the potential of what can happen, than dealing with whatever actually happens. I won't necessarily be happy about it, but once it does, I usually manage. It's like the fractal-like possibility tree that branches infinitely with every possible permutation gets radically pruned down. In effect stopping you from endlessly traversing the tree and catastrophizing, and thereby drastically reducing its mental load. And heaven knows that in times like these that tree gets mighty heavy. (In addition to having mentally rehearsed the Event helping pre-digest the outcome, which, as much as I dislike the pessimistic saying "prepare for the worst, hope for the best", pretty much encompasses.)
Dealing with a shitshow of an occurence sucks, but as long as it's a Known Thing, it's not an ungraspable infinitely morphing shadow on the ceiling of a nightmare riddled dark night.
Also, I have to cosign the lack and/or difficulty for autistic people to establish relationships contributing to this fear of change. Not limited to the fear itself, but also because the lack of substantive relationships, the grounding effect thereof isn't there. To put it plainly, the future is a whole lot less scary for starters when you're solidly embedded in a social group.
(Lastly, ouch, that part about asking nothing and giving everything in the hopes that you'll be noticed and liked is too dang real.)
Thank you for writing such a vulnerable piece. I've never felt so seen by anything before, and if I was still capable of crying it would have made me sob (as it is, I have shed 1 tear, which is quite an accomplishment). I felt like I was reading about my own life, except unlike this story, my loss didn't have a happy ending. I'm still clinging to the past, thinking every single day, "I just want things to go back to the way they were". I've accepted a lot of monumental change in my life, most notably the loss of my health and employment due to chronic illness - for some reason I can accept that, but not the loss of the most intense and perfect relationship I've ever had (and of my last anchor/safe person). I don't know if the preconditions exist in my life to be able to accept that particular loss. I will have to think about and probably reread your post a lot.