Oh, my heavens. It’s Friday, which is both good and bad. I have a huge deadline tomorrow morning — we’re launching an application at work that’s at the center of a huge political battle. And I’ve been in the thick of it for about a year, now.
When I think about it, it’s pretty amazing that I’m still functioning. This project has torn the living crap out of me and lots of people who worked on it. The main problem is the politics behind it — four six different bosses from three different countries, all at cross-purposes, all using those of us “in the trenches” as cannon fodder to build their empires.
And meanwhile, all we’ve really wanted to do was get the job done. Just get the work finished to our satisfaction and the best of our abilities. The project had to be done. It’s replacing a couple of other software applications that have kept people from doing their jobs for years. Those old apps have made a lot of people miserable / mad / frustrated / apoplectic (me included). So, replacing them with a single “solution” just makes sense.
It’s been expensive. It’s been demanding. It’s been extremely detailed and time-consuming. But it had to get done.
And we were all prepared to do it. We were ready to do it. To make the concessions. To compromise. To collaborate. To do what needed to be done. And we’ve done exactly that.
No thanks to our bosses. If anything, they’ve been the blocking factors. They’ve been the ones who have been making everything harder and more complicated than need be. They all want to hang onto their power and influence and make sure they have a place in the evolving world around us. But it’s been at the expense of the people actually doing the work.
Like me. And the other person doing a job similar to mine in another division, who’s been in lockstep with me, the whole way. She might actually be dying. She’s got COPD and a host of other health issues, and she’s been out sick a lot, over the past couple of months. She’s having surgery next week, and I’m not sure if she’s physically strong enough to survive it. Others on the project have been on extended sick leave, because the pressure was just too great. We’ve all been pushing forward. And the thing holding us back, has been “management”. The people in charge. Who see imminent success on the horizon, and all want to jump in and take credit for it.
Of course, we’ll just be pushed out of the way, as people who had nothing to do with any of it step in and start to crow about how they had a role in the success. While those of us who put on the proverbial brakes and kept people from making really bad decisions are pushed to the side and dismissed.
I just want it to be over with. And then I want to go on vacation for Thanksgiving week and not think about any of this. I won’t be able to, of course. Oh, sure, I can take vacation, but I won’t have all that time off. Partly, that’s okay, because getting this thing launched is pretty exciting, overall.
And when it’s live, it’ll be a thing of beauty.
But man, oh man, am I tired. Just fried. Over it.
And sick of everything.
Well, once this is all put to bed, with all the nagging details settled and accounted for, the next batch of tasks identified and prioritized, and the political wheels put in motion to get those things on the radar of somebody Very Important, I can step back catch my breath, and go back to living my life.
I just have to get through today in an orderly fashion and in one piece.
Then, tomorrow, I can dig in for a few hours in the morning… get this puppy launched… and get back to my life.
And do something other than work 12 hours a day for somebody else.
It’s been a very strange bunch of weeks. I’ve been on an emotional roller-coaster for reasons that aren’t immediately clear to me. I go through my days with a combination of logical efficiency and having to fight back tears.
Take a break… find an empty conference room and compose myself… Or put on my headphones and hunker down in my cubicle till the emotion passes.
Either that, or I’m flying along without a care in the world, dealing with whatever comes up with surprising alacrity and presence of mind.
Or I’m in a numb state of overwhelm that just doesn’t add up, because my life is no more overwhelming than it’s ever been. If anything, it’s less overwhelming, because I’ve cut back on the sheer volume of stuff I do on a daily basis.
Maybe that’s it… maybe I’m feeling the loss of my intense focus and drive. Maybe I’m suffering from a lack of mental activity. I know I do feel unchallenged in my daily life, and my greatest cognitive challenges are not losing my mind in the emotionally, sensorily vacuous political atmosphere I function in, each day.
Come to think of it, I probably have a lot of good reasons to feel sad and bereft — yeah, bereft is how I feel. I can’t list all the reasons here. At the same time, I have just as many reasons to feel positively bouyant… which I do. Back and forth the emotional pendulum swings…
And all the while, I know that things are happening that I should be feeling something about. Something… But I can’t muster it. I can’t summon the sensation. It holds back, it keeps its distance. It’s just not there for the taking, whenever I need it.
Which makes me look cool, chill, sometimes even cold.
I don’t want that. So, I feign emotional responses. A lot. Based on what I see others doing. I do a lot of mirroring and mimicking, these days. And yes, it’s exhausting. Because there’s no room for someone like me who doesn’t feel something on demand, and people distrust others who aren’t like them. And I work with people who are skittish to begin with, what with all the layoffs happening and organizational drama taking place.
In some ways, alexithymia really comes in handy. It keeps me out of the pit of despair that everybody gets sucked into. But then my empathy kicks in, and I co-experience other people’s dramas, without really knowing why. I don’t sense things in the same way, with the same cadence/regularity that others. So, I have the dubious honor of sharing their emotional states without really knowing why…
And yes, it is exhausting.
So, I curl up in bed at the end of the day and weep. For whatever reason. Reasons I can’t imagine, that I can’t fathom… but which show up, days, even weeks and months on down the line.
Great piece that I can relate to. I’m not in a situation where I can choose to completely disconnect, but I sometimes think of myself as distinctly “Japanese” — maintaining my solitude in the midst of the teeming throngs.
Since the late 1980s, scientists have been tracking a whale who sings at a sonic frequency higher than any other whale of its species: at 52 hertz, just above the lowest note on a tuba. It sings songs no one answers. Internet societies have been following it for years like sad Ahabs, transposing their own feelings on to it, believing they understand it. Alone in their bedrooms they hunt this whale they believe to be lonely just like them. Talk to scientists and they will say other whales can probably hear it, maybe it’s deaf, maybe the whale’s song is the result of a genetic mutation. But it doesn’t matter: the lonely people have taken this whale as their totem. I’ve followed it for years.
In 2015, I tried psychodynamic therapy for what my therapist called “a loss thing”. Months prior, my grandparents collapsed on their bedroom floor and died in hospital, days apart, from the same case of pneumonia. The upshot was that birthdays make me miserable and trailing their twin coffins into the crematorium on my 29th birthday didn’t feel wildly out of sync with my mood. What followed this – one of the rawest experiences of my life but also one of the best attended birthday parties – was pulling the plug on a relationship that had been comatose for years, divvying up not only books but friends, plus the death of a Labrador I got when I was 12. It felt like the things that kept me tied to my youth – a blind dog, the unchanging 1970s blue bathroom in my grandparents’ house, nearly all of my 20s – were disconnecting their carabiners and pushing me out into space. A loss thing.
I was so excited to get my telescope to watch the eclipse a few weeks back. My life seems to be full of ups and downs, these days. Really, really UP for the eclipse… really, really down for my day-to-day life.
Here are some pictures from my recent UP time. Taken with a smartphone positioned just-so over the eyepiece of a modest telescope with a solar lens. Enjoy.
I have time to read. I finished a book I’ve been trying to get read, now, for months. A guy on my team at work loaned it to me, and he’s been wanting to discuss it. I’ve been putting him off, feigning knowledge from the few paragraphs I skimmed over the past weeks. This weekend, I got that done. Now we can discuss it. I liked the book. It’s given me ideas. I skipped a number of parts where the author went into intense levels of detail that I couldn’t follow and didn’t care to absorb. I’m very pleased that I finished reading it, and I can discuss it with my colleague.
Now, I really dohave the day to myself.
Red. Like life. Lifeblood running through my veins. Life coursing through my day.
Uninterrupted, unsullied, untainted life — free of the limitations of the cubicle, the politics, the jockeying for position, the competing agendas, the contrasting working styles.
Untroubled by the existential risk of saying something wrong to the wrong person in the wrong way at the wrong time. Crossing lines that I don’t even see. Drifting into dangerous territory, simply because I seek honesty and truth. Being at a distinct disadvantage because I’m blind to the faces, deaf to the tones, too busy dealing with all the sensory details to attend properly to the subtleties of … whatever it is that the neurotypical folks around me deem essential at any given point in time.
I hate my job, but I love my work. If the people all disappeared or went off to fight amongst themselves in their own separate playground, that would be fine with me.
But why am I even thinking about them? Today is bright red with possibility. A high tower reaching to the sky. The clear, clear sky.
It’s time to celebrate. Time for a walk. On this quiet day, when everyone is Somewhere Else.
And I have the neighborhood — and my life — to myself.
Every now and then, I grow weary of words. Like, every September. Last year, this time, I went non-verbal… seems to be something about this season.
This is one of those times. Again. It’s not because I don’t like words… I love them. They ground me. They help me make sense of things.
But currently, I have to stay focused on a very narrow set of endeavors. Work is incredibly, distractingly, defeatingly busy… all with no real sense of any of it being worth it (though that may be my alexithymia acting up). I have a few top-priority personal writing projects I’m focused on, as well as an ever-increasing workload at my day-job. And then there are the things I help others with.
I have my hands full.
I’m doing a lot of writing in other arenas, even if it’s not showing up here. My hands hurt. My head, too, because I can’t get out the ideas that are in there, which are all pushing to get OUT.
And all along… here’s this blog, which I have neglected, pretty much, for weeks, now… months, really. Which I don’t like, but that’s how things have gone.
All the words… all the words…
It’s time for some pictures. Visuals. Time to do something that helps me navigate the non-verbal part of my life. To present something that really communicates about my experience.
We’re so accustomed to having everything be clean and lovely and plentiful, that when things aren’t at their peak, we get piqued.
Once upon a time, kids did not expect to all have the toys and gadgets and entertainments that are so plentiful today.
Once upon a time, a big empty box was the most wonderful thing you could ask for.
I was one of those kids.
I’m short on words today – I’m in a reading mood, not a blogging mood. I want long passages of complex thought, not a few paragraphs of passing impressions.
Those passing impressions are fine and good. I love them for what they are…
It’s dreary and raining, and I’m doing laundry. It’s been a long week.
So, I will retire to my living room and recline on my lovely sofa, and marvel at how much more clean and lovely and plentiful my present is, than my past was… and how much more there is, than I ever dared hope or dream as a kid who just wanted a big cardboard box to play with.
I was going to spend today reading, but I decided to stop by the Vivian Maier website… and now it’s got me thinking. This photograph she took of New York City in 1953 says amazing things about the differences between then and now. There are no cell phones. There are no screens. There are only people watching what’s going on immediately around them, interacting with their world. They are making the world as they live in it… and now we are looking at pictures of them having done that already.
Because now we don’t actually participate in our worlds. We simply film or photograph it for others. Or watch the images others have captured — of the past, distant or recent, which we haven’t participated in. Because, well, we’re looking at our screens.
And it occurs to me that, like classic rock on the radio, our media are suspending us in time by consuming our attention on things that have nothing to do with our present. We’re so busy looking at what used to be, or what we missed, or what may be coming in the future, that our present is deprived. Dessicated. A thin shadow of what the past once was.
And then there’s Vivian Maier… A few years ago, I learned about this enigmatic street photographer whose work was discovered after a storage container sale in Chicago. She had thousands upon thousands of photographs — rolls and rolls of undeveloped film — stashed away. And not until a real estate guy named John Maloof bought the stash and started developing the pictures, did the world realize her work existed.
Vivian Maier is an enigma to most. She focused almost exclusively on her work, taking jobs as a nanny to get room and board and some spending money… while she hauled her charges all over creation and took pictures of the world around her. She had few friends. She was leery of strangers — especially men. She tended to dress in men’s clothing. She was standoffish. Some of her former charges called her “cold” and “cruel”, if I’m remembering the documentary correctly. She had a rich life hidden behind the scenes — close ties to French relatives who loved her, apparently. And her work was exemplary. Prodigious. Prolific. Highly detailed and nuanced.
Without getting into armchair diagnosis of Ms. Maier, I will say that much of what she did, I would fully expect an autistic woman to do. It sounds so familiar, absolutely super-sensical, so logical and well-justified. If photography is your Primary Focus — and it apparently was for her — and you’re fundamentally autistic, then you’re not going to waste a lot of time on needless social interactions, wearing clothing that binds you and holds you back, or taking jobs that detract from your Calling.
Those things that made her what she was also made her a mystery to others. Her former charges, now grown up and well into middle-age, talk about her in tones mixed with annoyance, fear, and puzzlement. Just as I’d expect neurotypically developing children to talk about an autistic nanny. Just as I’d expect any PNT person to talk about an autistic person who spends a lot of time with them, controlling many aspects of their lives.
Four days before the 1947 Broadway opening of A Streetcar Named Desire, the New York Times published an essay by Tennessee Williams on the depression he’d experienced after the success of The Glass Menagerie summarily ended life as he’d known it.
Fame had turned Williams into a “public Somebody” overnight, a crisis that ultimately landed him in the hospital, “mainly because of the excuses it gave me to withdraw from the world behind a gauze mask.”
The sort of life that I had had previous to this popular success was one that required endurance, a life of clawing and scratching along a sheer surface and holding on tight with raw fingers to every inch of rock higher than the one caught hold of before, but it was a good life because it was the sort of life for which the human organism is created.
I was not aware of how much vital energy had gone into this struggle until the struggle was removed. I was out on a level plateau with my arms still thrashing and my lungs still grabbing at air that no longer resisted. This was security at last.
I sat down and looked about me and was suddenly very depressed.
After spending three months witnessing inequities that felt wrong in a luxury hotel, let alone in a functioning democracy, Williams sought salvation from fame’s spiritually-bankrupt life of leisure, hoping to distance himself from a toxic setup he believed hurt everyone it touched:
This quite a long read – started while on my walk down the road and back, yesterday. I dictated the majority of it while surrounded by trees, so I think that helped. It’s something I’ve been thinking about a lot, lately, as I work my way through books by and about autistic people.
What does it take, to read the autistic life? Literature about us abounds, written by psychologists, psychiatrists, parents, and various other experts. And yet, the volume of work by autistic writers … lags. There are plenty of autistic people in the world, and some of them are excellent writers. So, if we’re to build up Autistic culture, we need to support our writers as best we can. Signal-boost. Read and comment and share. The thing is… that’s easier said than done. In this long piece, I discuss the experience of reading the Autistic life, how it affects me, how I do it, and how / why I don’t do it as much as I’d like. I fall short of my own hopes and expectations. But that’s for a number of excellent reasons.
Finding Myself in the Pages
Lately, I have been trying to read more books by and about the autistic experience. Reading is one of my “big stims” — it calms me like nothing else, and I do a lot of it. The thing is, most of my reading is research papers, with endless abstracts, discussions of methodology and data, conclusions and discussions swirling around in my head.
There’s nothing like a good research paper to ease the existential angst of daily life. There’s a discrete beginning, middle, and end, and most papers I read don’t last past 10 pages. It’s really wonderful to have access to this amazing research (via Google Scholar, especially), and when I’ve come across papers I couldn’t afford to purchase, some researchers have actually sent me copies of their work. That’s a very significant experience for me – akin to having a rockstar ask me to tune their guitar. It may sound like I’m overstating it a bit, but only if you don’t understand just how highly I regard researchers and scientists and really value the work they do. When I was a kid, all I wanted to do was become a researcher. It was my dream. But I found another way in life, which may have actually worked out better for me, personally. (More on that later.)
But increasingly, I feel the need to hear about real life people and real life situations, in all their anecdotal glory. That goes for autistic people and autistic life. After all, this is my tribe, my community, my shared reality. Why not listen to what others have to say about it? I also really believe strongly that autistic individuals absolutely need to support their own culture, so as best as I can, I try to read books by other autistic writers – especially stories about their lives. If I can buy a book, I do (usually through http://www.abebooks.com, so I can support independent booksellers). If I can find it at the library, I check it out. If I think the library should have a copy, I sometimes suggest a title to the acquisitions people.
It’s so rare — so, so very rare — for me to see my own experiences replicated on the printed page. To say that seeing my life experiences mirrored in the words of another person is good for me, is an understatement. I’m not sure what sort of statement would suffice, because frankly it’s hard to describe exactly what that experience is like. It’s putting a non-verbal, visceral experience into a format that exists in a parallel universe. It’s trying to describe tasting a food you’ve never eaten that has tastes and textures you’ve never before experienced. It’s like translating hieroglyphics into Latin. Some meaning, at least, will be lost. But I’m gonna try. I always try. That’s what I do.
For me, reading about the lives of other autistics is a very stop-and-go undertaking for me. I start with heady exuberance, picking the book I will disappear into, and then devouring paragraph after paragraph, highlighting the passages that seem to jump off the page at me – sometimes whole pages turn bright yellow with almost-straight lines of highlighter creating a jagged right margin of light – and I move from page to page with eager abandon.
Then I have to put the book down and step away for a while – and hour, a day, sometimes a week. Sometimes a month or two. I have to let it sink in. I am so accustomed to being invisible to the world… so acclimated to constantly translating the lives and sensibilities and experiences and values of others into something that is recognizable to me… that finding fluidity while parsing an experience that mirrors my own is a bit like trying to walk on your own two feet after balancing atop a galloping horse for four days straight, hanging on for dear life, your legs clamped tight around the heaving belly of the beast. When I “dismount” and step away from the steady stream of words, I’m wobbly on my feet. It takes practice to get my everyday mundane balance again.
You see, I’m not used to this. I’m not used to seeing myself on the page. I’m not accustomed to recognizing things at first glance when I read them in coherent, continuous sentences. I’m so accustomed to piecing myself together in fragments, looking for brief flashes of recognition to light my way, that to have one uninterrupted expression of autistic experience is, to be honest, almost blinding.
I blink. And I stumble. I put the book down and walk away, just as I used to put down the wide sweeper I used to clear my neighbor’s driveway and walk away, when the dust and the bright sunlight and the noise of the world around me got to be too much.
I fall back into literate silence.
A Life Continuously Translated
It’s not that I don’t want to finish the books. I do. With all my heart, I do. It’s just that it’s overwhelming. My inner life is like a desert in many ways – spare and clear and clean. It’s devoid of a lot of the cognitive “undergrowth” that seems to typify the neurotypical world. Where the average person — those other 67 people not on my spectrum — have a host of interactive relationships and confidantes and hobbies and activities (many of them relating to their kids) and plenty of opinions that get expressed and evolved on a regular basis, that’s not my reality. Their inner life seems to be the equivalent of an effulsive rain forest filled with drama and exuberant growth; mine in comparison strikes me as a desert with sand and scrub brush and cacti as far as the eye can see. An odd lizard or scorpion or snake… And not much rain. But there is life here. Beneath the surface, and under conditions that must consider in hospitable, there is life. And lots of it.
My outer life is very much like that inner life. As I look around, I don’t see a whole lot of “me” reflected in the ways and means of the world I inhabit. I know I’m quirky. I know I’m unique. But it never ceases to amaze me, just how unique others consider me. In my own eyes, I’m really no different from others in the ways that matter — I’m just really, really interested in some things. I just really, really get caught up in stuff that other people glance at briefly before moving on. And it never ceases to amaze me, just how little of the world actually resembles something I’d consider acceptable. The thoughtfulness, kindness, compassion, depth, empathy, meritocracy, abundance of libraries, good music, nutritious and tasty food, fresh air and plenty of time to enjoy it, nuanced variety of culture, and comprehensive start-to-finish recycling programs that all seem bare minimum prerequisites for civilization… where are they? What the hell, people? Where are they?
It’s not easy, having excruciatingly rare access to things that I consider fundamental to living a decent life. It’s not easy, rarely seeing your own values, your own sensibilities reflected or even recognized in the world around you. And it’s no wonder to me that non-autistic people are horrified at the prospect of autistic existence. To never be reminded of who you are, to never see yourself mirrored in the world around you, to never have any products or services or food or activities or inventions that suit you praised and “upvoted” for the good and useful things they are – except in the occasional case where some necessary implement of artistic sanity is hawked as a novelty, a fad, a doodad to pass the time – I can’t imagine that neurotypicals would survive for long in the world I inhabit.
As a queer non-binary person, also, I can pretty clearly say that my version of life would probably drive neurotypicals to the edge of sanity. My marriage is not so very different from straight people’s. Yet, it is different — and we’ve constructed it that way on purpose. My gender and the ways I express it are something my straight peers acknowledge only after they’ve gotten a few drinks in them and they’re feeling a little… uninhibited, if not curious. My marriage rarely comes up in casual conversations at work, unless I jump into the conversations — and then the discussion doesn’t last long. I’m most welcome when most of me is invisible. If I didn’t have to put up with this to make a good living (and make sure I don’t die destitute and dependent on a government that already wants to kill me), I’d never bother.
Most neurotypical straight folks I know have no stomach for this kind of life. To never see people like you on television, movies, or in popular media conversations, except to make fun of, or to be called out as an example of what you should never, ever become – that sort of invisibility, or worse, animosity… I’m sure that drives a lot of marginally straight neurotypical people to adhere with all their might to heterosexual arms. I don’t want to be unkind, and I hesitate to over-generalize — and of course there will be exceptions to these rules I’ve concocted — but I’ve been watching all this long enough to detect repeated patterns.
All around, I am a desert, compared to my rain-forest friends. As well as I may appear to blend, at the core, I do not fit. If my life’s essence were translated into a single sentence, it would be expressed in 50 different languages, including sign language, Morse code, pictographs, and the symbols of some alien race that appeared on earth for a few decades 10,000 years ago, then left when the locals got hostile. In nearly every aspect of my life, I am continuously translating what others say and do and model into something that might – just might, if I’m lucky – work for me.
And, more importantly, I am continuously translating my own experience into terms and conditions that non-queer people of all neurotypes can relate to. It’s essential to me that I meet people mid-way in creating the dynamics between us. It’s non-negotiable that I try… even if they do not. Ironically, I tend to translate myself so well, others don’t realize I am being translated. Except there’s just this one little thing or two that’s “off” about me. Like when I lived in Germany from 1985-87 and my German was devoid of any American accent. People guessed I wasn’t German, but they were certain I wasn’t American. A European of some kind. Maybe Danish…
It’s not that I am so terrible at being myself. It’s not that I’m ashamed of my queer autistic self. My queer autistic self is awesome! It’s not that I am so terrified of getting my ass kicked – although the prospect does come to mind, at times. It’s that I literally see myself as a perfectly valid thread in the intricately woven tapestry of life, and I have my place as much as everyone else – just as they have their place. We all do.
That sheer volume work has conditioned me to forever view my world through a lens. A filter. A prism of sorts that breaks out the light around me into distinct phases of the full spectrum, so that I can understand it better and do something with it. The bulk of that work falls to me, as I’ve rendered my uniqueness essentially invisible to the normalizing forces of the world. But it must be so, lest they try to rub me out and force my square size into their round hole – see Sonya Boue’s excellent piece for more. Getting my ass kicked is not nearly as violent as the imperative that we all conform. Nor is it as threatening. Frankly, I’d rather be beaten than part with my essentially autistic self.
Preserving my own autistic self while inhabiting everyone else’s world requires that I constantly apply a filter… and then act accordingly.
They said ______________.
What I think they meant is ____________, but what they really meant was ___________.
If I were in their shoes and I meant __________, what would I want to happen next?
Really? Who would want that?
But based on past experience apparently, they do, so just suck it up and act accordingly. It’s what they need. It’s what the situation calls for. Who cares if it makes no sense to me? That’s what’s required under the circumstances.
Suck it up, and move on to the next nonsensical situation. And forget yourself and your standards in the process. If all goes well, you’ll reach the end of the day without turning into collateral damage.
If I don’t apply the filters and react according to what I’ve learned, I run the risk of coming up short. Setting someone off. Making something nervous in ways that they don’t understand, but which somehow trigger them to intensity, even violence. I have failed socially more times than I can count, in ways that to this day I don’t even fully understand. All I’ve had is a sense – an empathic sense, a co-experience of roiling, uncertain, intimidated emotions — from the other side of the space separating me from my interactive counterpart.
I did it wrong.
I said it wrong.
I didn’t answer right.
I didn’t reply the way I was expected to.
And so follows the inevitable pulling back of that once hopeful but now distant other who is confused – and rightfully so – because I broke a rule of engagement that everyone knows must be obeyed. Or worse, I’ve bent to the rule into an unrecognizable shape, so that the original is no longer useful, recognizable, or desirable. I’ve turned it into something else, which makes my faux pas even more subversive, even more dangerous than a simply broken rule.
Looking Directly Into the Light
So when I read stories about autistic lives and autistic experiences that mirror in my own, it is with a sense of trepidation and a little dread. I must drop my filters. I must put down the lens. I miss look at these things without my skewed-by-design vision – the kind of skewed vision that in non-queer non-autistic spaces keeps me safe. I have to not just look, but experience these stories as my own. For they are. I have to take in these accounts of feelings as the person I am — as the whole of me. Viewing them as a distant “other” makes them unreadable, for the language becomes a polyglot mishmash of terms I can only understand from within them. Taking a cool, distant look at them… treating them as a subject to study, rather than to experience puts me in league with Francesca Happé, who said our “accounts are intriguing, [but] it might be a mistake to take what is said at face value”. (see Happé, Francesca. 1991. “The Autobiographical Writings of Three Asperger Syndrome Adults: Problems of Interpretation and Implications for Theory.” In Autism and Asperger Syndrome, edited by Uta Frith, 207-242. Cambridge: Cambridge University Press.)
Putting some distance between myself and the other autistic writer may seem like a safer thing to do (I know it seems that way to me), but in doing so, I find myself unable to decipher the multilingual, multi-modal ways of thinking and understanding that are native to me. To make sense of what I’m reading, I must accept that I understand what’s being said. I must drop the protective shield and let the stories in, where they strike notes and pluck chords that are usually only mine to play in the secure silence and secrecy of my own autistic soul.
And it angers me. It frustrates me. Here I am, sitting down in the privacy of my own home, and the safety of my own cocoon, and I cannot seem to let myself relax. I cannot sustain attention long enough to make the most of these precious experiences, these personal accounts which have been entrusted to me and I cherish as a part of my own people, my tribe… the living, beating heart of my own culture. I cannot seem to get myself the leeway to sit with these things for more than an hour or two. What is wrong with me?
Actually, there is nothing wrong with me. There is everything that is right with me. But that everything has gotten the shortest of shrifts, when it comes to actual practice in the outside world. Looking directly into my own reflection on the printed page is similar to looking directly into a stranger’s eyes. It’s too much. Literally. So much emotion. So much recognition. So much uncertainty. So much to process. So, so much. Who is this stranger I see? Who is this … me … speaking loud and clear?
When I sink myself into the experience and relish it fully — as I must — I am not only internally overwhelmed, but also propelled in 100 different directions. In the space of one page, even one paragraph, I can relive the vivid memories from my own life that match what I see on the page.
For every one mention of bullying, 12 different recollections pop up in my mind – both from my own experience and from instances I’ve heard about from others like me. I have to stop and ask myself if perhaps I was actually bullied a lot more than I think I want to see. I have to wonder if I miss read all those social situations where I thought I was fine and I thought people were my friends, but they were actually being cruel to me.
My life has been peppered with people who I thought we’re good for me, but who were actually very bad for me. I now know why I chose to develop relationships with them – the very fact of their meanness woke me up in a way. They kept me on my toes. They charged up my brain anyways that I needed for the sake of sustaining attention. Part of me needed to be around people who didn’t treat me right, not only — as the psychologists tell me — because it was familiar to me from a lifetime of mistreatment, but because the stress hormones stimulated my ability to be ON and be fully engaged with my own life. I wasn’t just a sucker for punishment. My system knew what I needed to stay charged up, and mean-spirited people who treated me like crap offered just the occasion to do that.
Of course, there was the inevitable confusion about what the social cues minutes – in the midst of all that sensory overload – the bright lights, loud noises, the quick movements, and the perpetual fatigue the dampened me in so many respects. The trauma, the drama that I hardly noticed, but “sank in” days, weeks, sometimes years later, and which still took a toll on my bio-chemistry and neurological wiring while it was happening. Alexithymia has been both a friend and then getting me in that respect.
The kinds of sidebars and tangential explorations of the past two paragraphs consume much of my internal time and attention, whenever I read Autistic lives. Just a mention of being bullied, just a paragraph about a social misunderstanding followed by ridicule will be set off an associative cascade that sidetracks me for hours, days, sometimes weeks… even months. I know that now. I didn’t before, when I was struggling to finish an eBook I’d downloaded back in 2016. I sensed it vaguely, but it’s taken me quite some time to understand that’s what’s happening.
Cue the Flash Flood
It’s not just dropping the filters… lowering the shields… that intimidates me. It’s also the open floodgates of information – all of it highly detailed, much of it carrying an emotional charge – that turns my reading of Autistic lives into the start-stop exercise… and trying to remember where I last left off in the book, and promising – challenging – chastising myself throughout the process.
I have to cut myself a proverbial break. I am not used to this. My desert life is not accustomed to this level of recognition and ease of empathy. I’m accustomed to jumping from conceptual rock to rock, while crossing the rapids of non-queer, non-autistic life. It’s fraught. It’s perilous. But it’s what I know.
Now this… this recognition. This unleashing of pent-up information I’ve categorized and tucked away in the back of my mind for future reference — lessons learned to keep me from re-committing crimes of social omission and commission that I still don’t fully grasp. This release of data points serves no protective purpose. What good can it to do me, aside from reminding me of my challenges, difficulties, and lack of place in this un-me-like world?
Like sudden storm in the desert, directly reading Autism sets off flash floods emotion, association, the re-experiencing of things I never thought I wanted to experience again. I am not used to this. The rain has nowhere to go when it hits the parched, cracked surface of my rock-hard shields. My earth cannot take it. I cannot absorb the sheer volume of all that liquid unleashed in such a short time. The veritable rainfall goes where it will, draining to the arroyos, building and building and flowing and growing, sweeping into the canyons, washing out gullies that have been blissfully dry for years, sometimes decades. The flash flood carves crevices into my understanding of who I am, who I was, who I can become, eroding assumptions, undermining my characteristic understanding what my identity should be. Here’s another Autist, apparently just like one-in-68 me, speaking of things that neither of us ever wanted to happen. We cannot turn back the clock, we cannot undo what’s been done, we cannot un-see scenes that were forced upon us in the unfolding drama of our lives. It’s just there, this shared fund of unwanted knowledge. It’s all just there. And it’s bearing down on me like a high wall of flash flood filling a space that I thought was just another neatly carved out hiking trail.
So, I jump out of the way. I scrabble up the side of the gully and pull myself to safety, waiting for the flood to pass. I put down the book. I turn off the tablet. I go do something very different for a while. Maybe I even forget I was reading the story, to begin with. I want to read it. I need to read it. Just not all at once. Eventually, I’m sure, the water level will recede, and I can continue on my journey. Maybe I dip a toe in the passing water, testing the temperature. Maybe I try to wade across. Maybe I decide to go for a swim. But the fact of the flood is there. Inescapable, the only thing I can do is engage.
Living to Read… Reading to Live
Small wonder, it takes me so long to read these books. Once upon a time, before I knew the first thing about why I was the way I autistically was, long before I even needed to know – I was a kid, what difference did it make? – I could read for hours. And I read fast. Book after book. Sometimes the same book over and over. In retrospect, I don’t think I understood everything I was reading (for all the times I spent on Lord of the Rings, I grasped only select parts that meant something to me). But total comprehension was not the point. The point was to read. To drag my eyes back-and-forth across the page and there with make the kind of movement that would soothe my frazzled nerves and give me a sense of consistency, show me pattern I could follow, grant me I cadence that was mine, all mine, and place me with in the safe embrace of the sound of turning pages.
Now, things are very different. It’s not just soothing I seek in my books — it’s something more. Something decidedly un-soothing. In reading Autistic lives, I must read for comprehension, God help me. I must do it for my community, I must do it for myself. I must do it, to lift something common from a place shared across space and time, to elevate it into the public view. To read, and then to write. To share and share some more — between myself and the writer, between the writer and the rest of the world. Culture doesn’t create itself. It needs human interaction as a delivery agent. Even if that interaction is sequestered to a book-lined upstairs study somewhere in Central Massachusetts. Culture does not live on its own — it lives through us, and I am a willing gateway.
And so I read Autistic lives. I keep my select set of books near to hand, with my highlighter and my odd sticky notes, and I read what I can when I can. I load up my eBook copies on my various devices – phone, tablet, laptop, desktop – and I email myself screenshots from the marked-up passages. I copy text and send it to myself. I blog about it. I think about it. I’m not sure that I’ve ever really cried about it, but that they may yet come.
Try as I might, it’s still hard for me to come closer, to fully engage with those words on the page. There is always this distance between me and the depicted world – a residual stamp left over from all my dealings with a non-autistic world that is nothing like me. There is still that habitual distance I keep between myself and others, because I am – after all – other. I am that by default and by choice. I don’t think it’s bad, I don’t think it’s good, I think it just is.
And being other doesn’t completely stop when I read the words of autistics. When I take in the accounts of others’ experiences which are so much like my own, I cannot help but compare and contrast. I cannot help but make myself an Other. Perhaps being “one of them” exposes me too much. Or maybe it’s more honest and accurate, to acknowledge that no matter how much we may have in common, we are still separate and distinct. Being surrounded by autistic folks, as I am now and then, I can still feel every bit as lonely as I do when I’m with allistics. Maybe there is no such thing as unity, and maybe even though we share core experiences, we are still too different from one another to truly connect in the ways that so many wish and hope to.
Part of me feels disqualified. So much for unity. But I know that my autistic brothers and sisters probably won’t hold that against me. Because they too are Other. And perhaps the greatest kindness anyone can do for us is to accept us as Other and simply accept it. Let that be. To allow us the space to be different, to be unlike the norm, to distinguish ourselves as wholly unique – all our fragments making up a series of loosely associated whole humans… The most separate being the most human of all.
And so this long piece brings me to a point of grudging acceptance – that it is unrealistic to expect myself to simply breeze through all of the readings about Autistic life and experience, as though it were just another research paper. These are excavations of hidden lives, archaeologies of autistic spirits, and each of the items pulled from the thick, protective dust of variously pulverized souls must be handled with care, like any artifact of prized antiquity.
We Autists are as ancient as ancient can be, and our fragmented lies are so deeply hidden. Should we not treat them as treasures? Should we not treat them the same care, caution, protectiveness that we would give a shard of pot, a piece of jewelry, and inexplicable item of adornment which surely must have been so very important to someone who wanted to wear them on their journey to the other side.
These are treasures which cannot just be back-hoe-d out of a pit and tossed onto a pile. They must be carefully, ever so carefully, lifted into the light of day, dusted off, examined, and yes – loved – into their full usefulness. They are not the sorts of artifacts that should be placed in a case in the basement of a museum. Rather, treated like the set of perfectly wrenches that got dropped by accident a long time ago, and which can be restored to usefulness with the proper attention and care.
What we find in these stories has worth. It has use. And so I must tread carefully as I mix my metaphors and wade across the sloshing arroyo of these stories, careful not to slip, respecting the power of the current, and knowing that for all the flood bearing down on me now, there could be even more close behind.
All these things need caution. All these things cry for care. And so I will allow myself that space… that freedom… to fully and completely commune. In the privacy of my own life, in the security of my own cave, and the silence of my half-healed mind where an entire universe lives and breathes and has its being.
And maybe, just maybe, the pent-up tears will come.