an attempt

so, i’ve been going through a phase of sorts. it’s one where i can’t make decisions, or be confident about anything. i waver with words, double- and triple-checking them in my head, making corrections as i go, rather than letting the failures exist out there and dealing with the consequences/awkwardness. i’m petrified of saying the wrong thing, or living the wrong way.

i’m so indecisive i can’t decide how many spoons of tea to put in the pot, or if i should eat a snack now or later, or if i should read now or later, or what TV show i should watch, or if i should be watching TV at all. my entire life feels up in the air and confused, almost like playing a game. that scares me.

one could say if one were making comparisons (which i have been, to make myself feel better) that i’m in a “better place” than i was a year or so ago at this time. i’m better functioning and not AS depressed, certainly. but i do not know what to label this grayness. this time around, it’s full of awareness that things are unsatisfying and slow. i tell myself, relax. chill out. you don’t have to hop from thing to thing and stay busy all the time. that’s what summer is for. right?

in any case, this feeling isn’t new. it’s been around. only, since school and external purposes have dropped away, the ’emptiness’ (space, silence, peace, call it what you will) of reality is laid bare and all light shines upon it. it’s daunting. i am faced with the days and the task of reconciling them, of constructing something. or of accepting doing nothing. and doing nothing seems often like the better option, because anything i do is not good enough, or somehow feels wrong. i’m not enthused about my options or about the final things i land on. e.x., i’m watching the show community right now with my best friend and while it’s good, i can’t focus on it. even when it’s funny, it’s not funny. nothing is.

when stuff gets like this, people say you should return to the things you love. what things do i love? they don’t satisfy me anymore. all cultural products intended for amusement or entertainment are fleeting and superficial. if i try something new i am embarrassed and give up easily. my brain seems to have surrendered, or something.

i am unenthused about writing this post, even. i only did it because it was written into my journal for today: “draft blog post”. and because i made a commitment when i made this blog.

i just don’t have anything to say that feels worthwhile. it’s all been said before. it all comes out wrong. being misunderstood is painful. i can try to be like someone else, an ideal in my head, but my performance is lackadaisical. i’m not even good at mimicry anymore because my attempts at pretending are half-assed.

i’m tired all the time. so, so tired. fatigued as hell. and i’ve said all of these things in my head so many times that my brain is gritting its teeth and going: “enough already. can’t you just calm down and accept that your life is good and peaceful and you have nothing to stress about and no real problems?”

i’ll end this post here because there’s nothing else to say.

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Exhaustion

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T.S. Eliot, “The Love Song of J. Alfred Prufrock”

Exhaustion comes in many flavors. It can smack like a train collision, lurk in midnight shadows, deceive you into thinking everything is fine and then pull a fast one, numb and deaden, stultify and slow down. In autism discourse, there’s not enough talk about the ways exhaustion takes over life and runs the show, fills your bones like liquid lead and weighs the body down, so that the merest task is like tunneling through an avalanche, where you are the point of nothingness and the other side is clarity.

Think of energy as liquid in a tall glass. Most able-bodied, neurotypical people start the day glass-full, able to go about the day with a reasonable amount of fuel in the tank, to plan and prioritize, and to use background energy to recall past errors and avoid them in the present, thereby improving functioning.

Autistic people wake up with a glass not-quite-full. To take an arbitrary number, autistic people are at 75% or less if the night was particularly fitful — many of us experience anxiety-ridden existences that follow into sleep and cause panicky dreams or nightmares. The sensory operating system doesn’t do a full, clean reboot. We don’t wake up fresh and ready by default although we damn sure do a lot to streamline the day and make existing a bit easier. We have our routines, goals, work, lists, et cetera.

But all of that takes immense effort. Too much existing and I’m back at square one: Exhausted. Sprawled on the bed with eyes closed, unable to speak, unable to be a human. Stuck in the dark and drippy tunnel on the other side of bustling humanity. They are made of lightning and sunshine and I’m inert, slower than molasses, my entire being metaphysically leaden. Gravity presses down with all its might and if not for the laws of nature I’d sink into the floor and the dirt and down into Earth’s core.

Exhaustion means I can’t take the same number of classes as my schoolmates nor can I experience dorm life like a typical college student. Many days I’m too zapped by 3 P.M. to drive to the store five minutes away for groceries. I’m a 50-year-old trapped in a 21-year-old body and the worst is knowing there’s nothing that can fundamentally change. There’s no miracle cure. I’ve simply got to make do with what I’ve been given, even if it means watching as a fictive gap widens between me and others my age.

On the darker days I, or more accurately, that little mean voice in my head (LV, to borrow Samantha Craft’s metaphor) excels in persuasion and I am almost convinced that I want to be like them. Then I remember I have never wanted to be a fish among other fishes just like me. Once upon a time I burnt every bridge there was because the people in my life were toxic. I did everything in my power to escape their demands and judgmental eyes. That was long ago. I’ve grown.

Today, I refuse to compromise my unique existence so I can be a little more ‘normalized’ and gain a second of approval in the fleeting, fickle attention spans of the people who live by making constant binary judgments of approval/disapproval. I don’t abide by their rules. Human nature(s) is (are) too complex for that.

The exhaustion of autism — combined with the exhaustion of innumerable chronic issues — often feels like a punishment. Let’s see that it is not. No, this isn’t bullshit optimistic nonsense. Think about it. Tiredness/shutdown/the sudden depletion of energy are as natural as the wind. They’re the body’s way of keeping equilibrium. Rivers rush in some spots and are unbelievably still in others. I don’t have to be a torrent all the time, nor will I be. I’m given this corporeal frame and no other. What I do with it — how I care for it — is my prerogative.

Condemning the tiredness gets us nowhere and is as good as wishing away the present. Sometimes I slip so far down the negativity slope that escaping the present takes on the mask of a reflex, suffocating my sense of the Real. The braver thing is to accept the hard facts of reality. This is a tired body unusually susceptible to gravity: Clumsy, uncoordinated, weighed down; the limited energy I have needs to be conserved.

I have lofty goals and amazing ideas and extreme ambition and everything I want exceeds my abilities. I’m not too proud to admit that. So I overshoot and end up completely worn out. Exhaustion is a precondition of my existence. Resting is the ongoing antidote. And as someone very brave and wise in my life frequently reminds me: Rest is a part of the work.

Rhythms

There is a popularized (and debatable) notion that autistic people are ‘naturally’ adherent to rigid, repetitive routines and structures, as if the implication is that we are automatons without feelings, that our valves are closed to beauty and variance.

I question this notion. It’s completely wrong for me. I’m not naturally drawn to inscribed routines and timetables. In fact, I’m afraid of living by the clock (I don’t understand the significance of it, or how to plan my life around it). I get major anxiety about the passing of the hours. Appointments make me writhe with the agony of anticipation. I don’t like calendars.

I have no notion of time discipline. “Time discipline” is a term that arose during Western industrialization, when the proletariat (mainly factory workers) were increasingly expected to obey the authority of clocks. The organization of people’s lives around the hours changed how they viewed themselves and fellow beings; clocks came to ‘regulate’ people, instead of people regulating their own daily schedules according to the flux of Nature (as they did on farms).

Which brings back to my original point: Autistic people are not robots.

I think we can (and should) re-conceptualize our innate desire for comprehension as a need for flows, not structures; and view the way we tend to repeat the same actions over and over not as repetitive, meaningless, and robotic, but as deeply meaningful, a way of creating rhythms. Think of a farmer living by the seasons. Nature is not scheduled out to the last minute and neither are we. It is colorful, varied, with many different synchronized tempos that weave together and harmonize. It’s beautiful!

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To put it another way: I do not wish to create “order”, in the hierarchical and authoritative sense. Order is dehumanizing and forced; it is a temporary way of superimposing a desired outcome on top of the real life that’s already there. Order is connotative of imposition and is a disturbance, limiting creativity and self-expression. Order is not regenerative; it is a norm, limiting the range of acceptable activities, feelings, and behaviors.

More useful is an understanding of time (lived and perceived time, not clock time) as composed of repeating rhythms — waking up and having breakfast; birdsongs as temporal cues (birds at the bird feeder in the morning, and the lull in the evening when they fly back home), the rise of sun, the waxing and waning of moon, the movements and the moods of the weather, the growth and decay of plants.

I instinctively and viscerally feel the cycling of fresh, new morning into lazy, sleeping, snoozing afternoon. I don’t need a clock to tell me that; in fact, I’m better off without the tension of constantly glancing at it. If only I never had to. I wish I could flourish as my rawest being, a being who engages with places and environments and understands these intuitively (but remains uncomprehending about why people willingly follow and perpetuate damaging social mores and conventions). To understand the world, I witness how everything continues, ages, and blooms, and feel the best when I am one with these natural patterns, not living in a mind-created artifice.

For us autistic people, each day is both continuity and a fresh start. We re-make ourselves every morning in amazing shows of resilience. I see my so-called ‘routines’ more as sacred rituals of marking life, as they are my body’s way of ‘tuning in’ and engaging with the days. This is how my brain breathes — it seeks, as best as it can, to be connected with life and not detached from it. This is how I seek natural balance.

This is Hell

(In honor of Autism Acceptance Month.)

Living life as an autistic person is an exercise in contradictions, every minute of waking. Life feels as though it were an elaborate game designed specifically to torture you.

Life says:

Give her heightened senses and an above-average appreciation of beauty; let her find it where no one else seems to — and then punish her by giving her sensory overload and meltdowns.

Give her a burning, aching desire to connect with other people, an endless capacity to feel their pain, sorrow, joy, and hope — and then punish her by making her literally incapable of crossing the veil into their world.

Give her excellent language skills, an intuitive grasp of the English language, and a quick wit — and then punish her by giving her social anxiety. Make her verbally incompetent, anxious, and unable to articulate herself without stuttering or wavering, no matter how hard she tries, or how many times she rehearses.

Give her a radically open mind, one that sees the boundless possibilities of human connection; let her see all of the ways in which people can come together and live in societies that are full of love and real connection — and then punish her by making her live in a country that harshly sidelines any variance, that stigmatizes it by calling it disability, and entrap her in a hetero-patriarchal, capitalist system that thrives on the exploitation of the innocent without apology.

Give her boundless hope, resilience, optimism, and the ability to treat each day like a blank canvas — and punish her by giving her executive dysfunction, autistic burnout in heaping doses, and fatigue her so that it will take her years to catch up to her peers.

Give her the ability to understand what suffering humans are going through, give her the qualities of nurture, honesty, unconditional love, and empathy — and punish her by making her unable to understand how everyone around her keeps a relationship. Make her unable to read the body language of those she desperately wishes to help. Constantly place her in scenarios where she is humiliated by those who have been conditioned to mock the different.

Give her all this, and punish her by giving her: trauma, poor motor skills, a vitamin D deficiency, a convergence insufficiency, and a whole mess of other obstacles that would have been easy enough to prevent and treat, were not everyone around her — adults and family members, doctors and teachers — so quick to stigmatize, so quick to call her a liar, not believing her, every day implying or outright saying that she is just incompetent, lazy, and exaggerating her struggles.

Make her brain and entire being radiate with light. And then attempt to snuff out that light with each new day that comes.


This is what life seems to tell me, every single moment, and in my darkest hours, I believe it utterly. I believe that I am a walking paradox designed to fail and ride through the bleakest waves of depression, the most heart-rending pangs of anxiety, the most painful chokes of trauma.

And yet: When I wake up and begin anew, no matter how hard it might be to get out of bed and meet with the day, there is something in me that perseveres.

Even given this brain that is considered defunct in the world I inhabit, I find the simplest thing — a bird singing in my backyard — proof positive that I exist for a reason — no predestined reason created by God, or any utilitarian reason — but for a reason glowing in the deepest part of my core. I meet with the world in that moment of stillness, and the world extends itself to me.

And my nihilism wavers; the deep, hardened sadness and disappointment dissipate like vapor, just for a brief moment.

Call it a life instinct, obliviousness, or blind hope. I continue.