I’ve had some weird, inexplicable pain in my right side for over a week. Pain tends to come and go with me, and I often find myself with strained muscles, pulled sinews, general soreness, etc. It typically goes away after a few days, so I rarely pay it much mind.
That just comes with the territory when you do your own stunts.
But for over a week, I’ve had some pretty intense soreness in my right lower ribs. I haven’t been able to breathe easily, and laughing, coughing, yawning all send a sharp jab of pain through me. It’s been hard to sleep, and it’s been hard to sleep in. I go to bed later and I wake up early, which doesn’t do much for my frame of mind – and body.
Still, I hadn’t been spending a lot of time thinking about it, researching it, or otherwise paying more attention to it, than the intermittent OUCH! that comes after a sigh, an inhalation, a laugh, or a cough. Until the past few days — after the 7-day mark — when the persistent pain just got to be too much.
I called my doctor’s office and made an appointment. And I did some research. I isolated the experience — what hurts and where… when does it hurt… what did I do differently, lately… what makes it worse or better — and I wrote up some notes. I used a version of the Listening to your Body Worksheet over at AuptimaPress, and I added notes about my symptoms and my concerns.
I really hate going to the doctor. I never feel like I do a good job of communicating what’s going on with me, and by the time I actually see the doctor, I’m often overwhelmed by the sensory experience and not thinking very lucidly. But writing everything down (well, the important pieces, anyway) actually helped me.
The main thing is, I just need to make room in my life for this experience, this pain, this thing that needs to be fixed. Ignoring it wasn’t helping me. Paying attention (hopefully) will help.
It’s been a tiring few weeks. Summer is hard for me. Too much sunlight, too much activity, too much… everything. Bugs flying everywhere. Too little darkness. And so forth.
I know I should be happy it’s summertime — and the weather has been beautiful, lately — but it just overwhelms me, at times.
The best thing to do is go to bed early, pace myself during the day, keep with my routine… and remember that I’m not exactly like everyone else, so I need to give myself some more consideration.
One of the most tiring things about the summer, is all the people asking me what I’m doing with my summer “time off”. Am I going on vacation? Did I do something fun this past weekend? In all honesty, my idea of a good time is just staying in with a good book, keeping the house cool and dark, and spending extra time in bed.
But nobody else seems to agree with me. So, I have to “spin” what I say, so it attracts as little negative attention (raised eyebrows, rolled eyes, sighs, probing questions about why?) It’s extra work. It’s worth it, of course, but it’s extra work.
Extra work for the summer.
And I think back to Odd Girl Out, now and then. There is so much to comment on in that book, especially as an autistic woman (er… non-binary individual who was born in a female body). Even though I’ve never felt comfortable identifying as female, my reality in the world has still be shaped by the outside influences which have treated me as a woman.
I haven’t felt feminine, pretty much anytime in my life. But I’ve been treated as such, so I’ve inherited all the invisibility and overlooking and misinterpretation and misdiagnosis that goes along with being an autistic female. I identify much more as non-binary, rather than trans, per se, and my gender identity is fluid. Sometimes I feel almost female — almost. Most of the time, I feel like a combination, a gender “dim sum”, if you will, where I pick the parts of my identity that work best in any given situation.
But still… the issues that autistic women and non-stereotypical males face… those I face, too.
I’ve been thinking a lot about how invisible we are — especially to the typically oriented autism researchers. We’re starting to get noticed — women, non-binary folks, men who don’t “fit” the typical criteria for autistic presentation. But there’s a long way to go, before we’re actually understood.
Heck, there’s a long way to go, before just about anything related to autism actually understood.
But there’s a darker side to this invisibility. Reference the quote from Odd Girl Out above – that the life expectancy of an autistic person is 10-30 years shorter than neurotypicals. Personally, that hasn’t been my experience. I come from an autistic family — a very long-lived autistic family. My Aspie grandfather lived past 100. My very Aspie-fied great aunt lived to 98. Most of my relatives who would easily meet the criteria for autism have lived long and full lives. So, I’m not sure that piece applies to me. I can see how it would apply to many of us — especially because we typically have so much trouble dealing with healthcare providers, and we may be unable to detect troublesome symptoms due to variable pain sensation — and variable sensations, in general.
Personally, I’m ambivalent about the prospect of living 10-3o years less than my peers. On the one hand, I feel cheated. On the other hand, life for an unsupported, unrecognized, marginalized autistic person can be dreary and dismal — especially when we’re so capable of so much more.
So much more achievement.
So much more contribution.
So much more emotion.
So much more participation.
So much more experiencing, period.
Even if my life isn’t “lived out loud” and in full view of the rest of the world, my overall experience is curtailed by the constant dealing with innately hostile situations — draining my energy from “peopleing”, standard-issue “adulting”, navigating the nonsensical, illogical, arbitrary world that tends to violate most of my sensibilities with impunity. Yeah, even though I do a fabulous job of shielding myself from the mindlessness of the world around me, and I’ve constructed an internal life where I am supremely comfortable and incredibly productive, I still feel cheated by the constant drain of my energy, time, attention, on things that are — frankly — beneath us all.
So, does the idea of spending 10-30 years less in the midst of this stupid mess really bother me? I’m not sure. I just hope the end isn’t too painful.
On the other hand…
Will I let the stupidity of the world stop me from living my life? Will I allow the mindlessness of others throttle my joy? Why should I? Why should I settle for less?
I shouldn’t. And I don’t intend to. I keep to myself for a reason. Because the way things are in the mindless world is far too brutal and pointless to be worth my time, energy, and attention. I’m constructing my own world in parallel, laying in the scaffolding, the infrastructure for my own happy existence.
I’m doing everything I can to constrain the amount of personal investment I expend on the neurotypical world, which makes no room for me. I’m using the time and energy that saves me to create my own space, my own environment, where I am wholly and fully myself. Regardless of what the rest of the world has to say about it.
I was raised in a community that was “streng getrennt” from “the world”. They kept themselves separate and apart from the mainstream, because they saw what a tremendous trap it was, for people like them. After decades of questioning the value of creating that type of world, I now see the point of it. And I’m drawn to replicate that in my own life — just not as part of a religious community.
It’s all a work in progress. And it’s work that needs to be done.
Because regardless of what the neurotypical mainstream world thinks of me and wants for me (mostly, what it wants from me for itself), I have value and merit in and of myself. I deserve to live. I deserve to thrive.
I’ve had a really busy and really productive weekend. Things have really flowed for me, and I’m pleased with the outcomes.
So far, anyway.
The thing about my past 48 hours is that they’ve been the culmination of months and months of inactivity. I finally got some real work done on a project that had been languishing for many months. And it flowed. It really flowed.
I also re-connected with an old coding buddy of mine who has a startup thing happening. It sounds like a fantastic opportunity, but of course they’re just starting up, and I need a regular income. So, we won’t be working together much unless / until he gets on his feet and can compensate me for my time.
It could work.
It’s just not fully formed, yet.
I’m looking ahead to the coming week with great expectation. The three people who have been making my life extremely difficult with their competing agendas and conflicting information are both going to be away. One is on vacation for two weeks — woo hoo — one is getting married and won’t be back till August, and the other one is traveling all next week.
At last! Some peace and quiet at work. So, I can actually focus in and get some work done.
I’m really looking forward to it.
Of course, I have to replenish after this weekend. It’s been pretty arduous, to be honest. And I expect to feel it keenly, tomorrow. But tomorrow evening I have my autistic adults support group, so that’s going to be fun. And I’ll get to see my new friends again, in an environment that actually works for me.
A little muse tapped me on the shoulder today to let me know that somebody out there needed to read this today. Naturally, when that muse speaks, I oblige. Because somehow, somewhere, she’s usually right.
So come on over and have a seat, and let’s talk.
You’ve just come from the psychologist’s or pediatrician’s office. They said the A-word. In connection with your child. Or rather, they dropped it on you and it might have weighed a ton of bricks.
You might be devastated, grieving for a child that will never be like you imagined. You might have felt all your dreams evaporate and vanish, like ghosts.
Relax. Seriously, it’s OK. You’ve got this. And even though you might not feel that way yet, you will.
I’m here to have the conversation with you that you need to have. The one that all the medical…
I’ve been banging on about Autistics needing Autistics for ages, but it was only when I went to the Speaker’s Day (you can read about that here), that I actually realised just how much.
I was talking about it with an Autistic friend at the weekend and she said, “It made me really angry. This is what we should have had. This is what socialising should be. This is what it is for everyone else.”
She was right. I’m angry too. Angry that I had to wait until I was in my late thirties before I could sit around a table with a bunch of virtual strangers, and not worry that I was missing something.
What was special about that table? It was round, that’s probably symbolic. Nicely Arthurian, no one was sat at the head of it. No hierarchy.
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.
****All images in this post should be accessible and coded with alternative text. Please let me know if you have difficulty.
Auditory processing refers to the way that sound is processed after it is heard. A person with Auditory Processing Disorder may have difficulty interpreting sounds they hear–often related to speech. The structure of the ear can be typical while the person experiences varying degrees of difficulty making sense of the sound.
I’ve been giving a lot of thought to raising happy and safe Autistic children. Happy and safe children make parenting them a lot less stressful. So I’m raising a topic that I think plays a major role in the lives of many Autistic children (and adults) unbeknownst to the parents.
It is important not just because it affects communication abilities but because it can lead to extreme frustration and other emotions which can result in unexplained behavior.
Absolutely beautiful. Just what I needed to read this morning – and I missed it, till now. I’ve been reading accounts by autistic folks, wondering why on earth it’s taking me so long to get through the books.
These are my life, too. These are all about my life, too…
But I stop. Stutter. Have to walk away, take a breath… and more. Let it all sink in, like rain in the desert that first sheets off into arroyos, flooding the gullies and washing to rivers, before the soil becomes damp enough to hold the water.
Piecing my life back together, after being so deliberately fragmented, so intentionally segmented, compartmentalized, sequestered… this is not an easy thing to do.
‘You’ll get used to it.” They said, and I waited. I waited for that Cat on a Hot Tin Roof click in my head that would mean it had settled into background noise.
But it never came.
Not for the seams on my socks, or the band of my bra, or the brace for my teeth or the glasses on my nose. Not for the elastic on my arms, or the lump in my sole. Not for the small pains or the big ones.
“You’ll desensitise with time.” They said.
So I gave it time.
More and more ticks and tocks, I poured them all into the deepening, widening hole of time. I gave it a year, then ten, then twenty, then thirty, and more. I gave it patience and space. I used distraction and all my tricks.
Hear me out, before you click away in disgust. I’d like to declare a conceptual “truce” with autism researchers. Way too much energy goes into rebutting and refuting often-well-meaning individuals whose stated (or implied) goals are to relieve the suffering of (autistic) humanity. I think we’re in the midst of a needlessly tangled mass of confusion which can be addressed and made right by a basic change of terminology – which in fact signals a refinement in how we approach autism in general.
This proposal is about more than semantics. It’s about the very roots of how we conceptualize autism, and where we put our energies in addressing its challenges and redeeming its experiences.
A few weeks ago, I was in discussion with several autistic women, and one of them brought up the idea of “curing autism”. Another one of the women was not amenable to that word at all — and I mean NOT. She got so upset, she almost left the conversation, and we spent a fair amount of time trying to help her calm down.
She did calm down, eventually, but the detour in the conversation was a stark and startling reminder of just how charged the concept of “curing autism” is for many people.
I’m not comfortable with it, either. I consider myself fundamentally autistic in nature. My family is all quite “spectrum-y”, and I grew up in a world where many people met the DSM-IV criteria for Aspergers. They’d also meet the DSM-V criteria for Autism, if anybody looks… but since that’s the “normal” way to be in that part of the world, nobody thinks to wonder if it might be “disordered”.
I don’t consider myself disordered. I’m just of a different neurotype than the other 67 people around me at any given point in time. When I view them honestly and without the customary masking, my well-concealed traits and qualities align neatly with the standard-issue descriptions associated with Autism. And when I talk about my life, I synch up nicely with the descriptions that other autistic folks provide of their lives – in both positive and negative respects. Fundamentally, I am Autistic. I am part of an Autistic community and culture. And like so many others on the spectrum, I wouldn’t change it for the world.
So, when someone talks about “curing autism”, it sounds to me like they’re trying to get rid of me… to eradicate the very qualities that bring vibrancy and enthusiasm to my life, as well as imbue me with the mind-boggling (to non-autistics) ability to get a whole lot of sh*t done in a short period of time, and do it better than just about anybody (except an autistic person) would reasonably expect.
Yes, autism can be challenging. Living in a non-autistic world as an autist is a pain in the ass, much of the time. I don’t see why I should have to be “fixed” or “cured”, when the rest of the non-autistic world doesn’t seem to be doing that fabulous a job of stewarding the planet and caring for its inhabitants. Why would anybody want to “fix” a collection of traits and abilities which have actually moved humanity forward?
To be honest, it feels like all that autism-cure research and the people producing it are “out to get me”.
Maybe I’m just being literal — it wouldn’t be the first time.
Then again, maybe that’s exactly what non-autistic researchers and scientists are hoping to do: cure autism, stop it at its root, weed it out from the general populace, so countless parents, families, teachers, and other allistic members of society needn’t be discomfited by our existence.
Here’s the problem, as I see it — they’re not really trying to cure autism. They’re confusing symptoms of social/biological/cognitive dynamics with a fundamental quality of life. They’re doing the equivalent of trying to change fair skin so it doesn’t burn so easily in direct sunlight… relieving suffering for “ginger” people with the palest of pale skin who suffer a lot from sunburns. That may be a noble goal, but some people are simply born with fair skin, and they like it. Or, they may not like it so much at times, but that’s what makes them who and what they are.
There are common-sense ways to address getting sunburned all the time. Like A) staying out of the sun at peak hours, B) covering up, and C) putting on some danged SPF-30 sunscreen. You don’t remove someone’s skin, or chemically change it, so they don’t burn. That’s a ridiculous thought. And yet, that seems the equivalent of what autism researchers are aiming for. They seem to want to get rid of my autism forever — the equivalent of flaying me alive “for my own good”.
Or do they want to get rid of autism? I’m not so sure. They want to get rid of suffering, and they believe that autism is the cause. Hmm. I suspect many such researchers are confusing their concepts. They’re thinking that extreme symptoms like rocking in withdrawn silence and refusing to interact are autism. They’re mistaking behaviors like stimming, intensely focused interests, and social “quirks” for autism itself. They’re operating within an elaborate network of reinforced false equivalencies that are skewing their understanding of autism and conflating our autistic ways of being with a widely varying mental disease.
They just don’t realize it.
And because everybody in the non-autistic autism-research community is agreed on their fundamentally flawed concept of autism (or they’ve agreed upon the general use of the admittedly misunderstood term for their common purposes), they’re reinforcing its misuse through practice, discussion, and funding. They’re inadvertently perpetuating cycles of counter-productive, highly problematic (some would say abusive) attitudes towards autistic people which not only harm us, but also prevent those scientists from even understanding what it is they’re researching.
But I think there’s a different way to conceptualize their work — and if they shifted their own frames of mind (and terminology) about what it is they are really doing, we might be able to make some headway in terms of relieving the suffering of so many autistic people and their non-autistic loved ones.
Rather than trying to understand Autism… What autism researchers are actually doing is trying to understand the root causes of the suffering that autistic people experience.
They’re not researching the Causes of Autism. They’re researching the Causes of Autistic Suffering.
What’s more, they’re looking for ways to mitigate those causes, so we (and everyone around us) can lead happier, less painful, more productive lives. They’re hoping to find the cause for our behaviors and symptoms, which are just that — behaviors and symptoms.
Those signs of distress and discomfort — the meltdowns, the blocking out of any human contact, the extreme repetitive behavior which may actually be self-harming in some cases (and yes, I’ve done it — from a young age, I used to be a head-banger and hair-puller who scared the crap out of my mother more than once)… I do think it would be useful to better understand how to avoid and manage the causes of those things. I do think it would help a lot of people on (and off) the Spectrum, to get some data about what eating a certain diet does to your highly sensitive system. I do think it would be useful to understand the biochemical nature of meltdowns and find ways to “nip them in the bud” before they turn into full-blown blow-outs which reduce many people like me to a faded version of themselves for days (even weeks) afterwards. I do think it would be useful for parents to better understand what prompts their children to withdraw and/or not speak, so they can A) give them the space to do what they need, B) not worry so much about it, and C) help their kids have more self-determination in how they interact with the world and develop into happy, healthy adults.
When we stop talking about “curing autism” and start talking about “relieving autistic suffering”, the research takes on a whole new direction. When we stop using the cognitive shortcut “autism” and start describing the exact problematic behaviors and traits that are experienced as a result of environmental, physiological, or social factors which form the substrate of their autistic distress, we may actually start having productive conversations about autism — and the dollars sunk into all that research might actually get somewhere.
Personally, I think the term “autism” is a red herring. It’s a conceptual catch-all that means whatever people want it to mean. It’s like the word “crazy”. People use it all the time, to avoid being more specific about what they really mean. Rather than saying “That man was deeply frustrated by what was going on, and his behavior became erratic and unpredictable in ways that scared everyone around him,” people say “That guy went crazy.” It’s quick, easy — too easy — and everybody thinks they know what it means. But they don’t. Not really. And that choice of words does unintentional (iatrogenic) harm.
Likewise, with autism, people talk about “children with autism” when they really mean:
autistic children who withdraw from sensory stimuli in ways that non-autistic individuals don’t understand
autistic children who experience physically, mentally, emotionally intense episodes of uncontrollable outbursts in the face of sensory overwhelm
autistic children who repeat words and motions to self-soothe in the face of sensory and cognitive overwhelm
You could argue that “autistic” covers all of the issues above, but that generalizes the situation too much. It chooses to focus on something that can’t (and shouldn’t) be changed — the autistic nature of the individual, making the individual essentially responsible for their own distress. More problematically, it glosses over the impact of external influences which actually CAN be managed and mitigated and totally misses the opportunity to understand the fundamental nature of the challenges faced — as well as the myriad ways those challenges can be productive and effectively addressed.
But when we change the words we use… well, that changes how we think… and how we approach the situation.
Here’s a quick example for you — below, you can see what a conceptual difference a simple change in terminology can produce. I’ve pulled the abstract from the paper Evaluation of Intestinal Function in Children With Autism and Gastrointestinal Symptoms and changed some key terms — substituting references to “sensory distress” for blanket-term “autism”. I’ve also removed the biochemical references for readability. You’ll get the point.
Objective: Alterations in intestinal function, often characterized as a “leaky gut,” have been attributed to children who are on the autism spectrum. Disaccharidase activity, intestinal inflammation, and permeability were analyzed in 61 children with autism and 50 nonautistic individuals with gastrointestinal symptoms.
Results: Some children with autism had mild levels of mucosal inflammation on intestinal biopsy. <snip>
Conclusions: The present study supports the observation that children with autism who have symptoms of gastrointestinal disorders have objective findings similar to children without autism. Neither noninvasive testing nor endoscopic findings identify gastrointestinal pathology specific to autism, but may be of benefit in identifying children with autism who have atypical symptoms.
Objective: Alterations in intestinal function, often characterized as a “leaky gut,” have been attributed to autistic children who withdraw from interactive contact and/or engage in repetitive, sometimes self-injurious behavior, as a result of heightened sensory distress. Disaccharidase activity, intestinal inflammation, and permeability were analyzed in 61 autistic children with behaviors related to extreme sensory distress and 50 nonautistic individuals with gastrointestinal symptoms.
Results: Some autistic children in sensory distress had mild levels of mucosal inflammation on intestinal biopsy. <snip>
Conclusions: The present study supports the observation that autistic children reacting to sensory distress who also have symptoms of gastrointestinal disorders have objective findings similar to non-autistic children. Neither noninvasive testing nor endoscopic findings identify gastrointestinal pathology specific to autism, but may be of benefit in identifying autistic children in sensory distress who have atypical symptoms.
To me, that second abstract reads very differently. And the results of such a reworded study might actually prove useful when thought about in different terms. Whereas the generalized designation of “autism” doesn’t shed much light on the precise nature of the issues, or the interconnected cause and effect, being more specific about exactly what’s at stake does serve to enlighten… not obscure.
Again, autistic reactive behaviors and sometimes disturbing traits are not autism. Rather, they can be signs of autistic suffering — something that most of us would like to alleviate.
I firmly believe that a relatively simple conceptual jump towards greater specificity in what exactly is meantand what exactly is being studied could align us, not continue to divide us.
Some might say it’s just a different choice of words.
I say, it’s a gateway to a whole different way of conceptualizing autism research — and a bridge to actual progress that can involve a whole lot more collaboration… not to mention productive results.
Photo by Stu Allsop – at RE:collections exhibition 2016 with my installation.
And lo, it came to pass that one day in the later decades of my life I experienced a touch of the ‘normals’.
But please don’t worry – I am quite okay. In fact I’m more than okay. I’m frankly energised in ways I don’t yet fully comprehend.
And again – don’t worry – I haven’t been ‘cured’ of my autism or gone all typical overnight. I am still emphatically me, only I’m suddenly a me with a growing sense that there are others quite like me, rather than me being a somewhat ropey version of you (you – for the purposes of this post being the non-autistic reader).
You see this typicality runs very deep in our culture. It seems to me there’s always a best and correct way of doing things – indeed our whole learning…