Reading the #Autistic Life

open book with a flaming heart inside
Image shows an open book with a flaming heart inside

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.

Advertisements

Chillin’ out with Austin Shinn’s book “A Flickering Life: A Memoir of #Autism”

"I hate the myth of childhood. The movies and TV love to paint childhood as a time of innocence and purity. You're free after all. You can do what you want. You believe in fantastical ideas. Childhood is a time of whimsy and fun and imagination. Please. Here's the truth: childhood is a nightmarish time where everything is out to get you. Movies and TV terrify you. Darkness terrifies you. You have absolutely no power at all. Your life can be upended at a moment's notice. Everything around you can be destroyed. Childhood isn't a fantasy unless you mean Game of Thrones."
Quote reads: “I hate the myth of childhood. The movies and TV love to paint childhood as a time of innocence and purity. You’re free after all. You can do what you want. You believe in fantastical ideas. Childhood is a time of whimsy and fun and imagination.
Please.
Here’s the truth: childhood is a nightmarish time where everything is out to get you. Movies and TV terrify you. Darkness terrifies you. You have absolutely no power at all. Your life can be upended at a moment’s notice. Everything around you can be destroyed. Childhood isn’t a fantasy unless you mean Game of Thrones.”

This is a quote from Austin Shinn’s book A Flickering Life: A Memoir of Autism, which I’m really enjoying. I started and stopped it a few times, over the past months. But today I spent a longer while with it, just relaxing this morning, instead of running around in hyperdrive mode, like I did yesterday. I really wish there were an audiobook version I could listen to while I’m out walking. Maybe I can get an audio reader… Dunno. I need to look around for one.

As I said, I am really enjoying this book. That’s echolalic because saying so is very true, and it feels good to say it.  I’d say it again, but unless you feel the words yourself, the echo of them may be more annoying than enjoyable.  So, I’ll stop.

Is it wrong to enjoy an account of another person’s pain? There’s plenty of discomfort he talks about, but that’s not why I’m enjoying it. The realism of it, as well as the shared experiences… that’s what I’m enjoying. Not so much the cringe-worthy moments, which bring back my own bad memories of bullying… never being recognized as having specific issues that were blocking me… the trauma of change… school’s negative aspects… This is why it’s taken some start-stop to get going reading it.

Then again, there’s a lot to be gained from seeing that your cringe-worthy moments weren’t yours alone. Someone else on the planet actually went through those things, too. It’s not a sense of schadenfreude I feel — more the relief at knowing, once and for all, I wasn’t crazy or “imagining” those things. And it wasn’t right for adults to blame me because other kids were bullying me.

No, I really didn’t do anything wrong enough to deserve that treatment. Other than being different. I became an insufferable prig, when my family moved from a small city to a very small town when I was 10. I truly did consider myself better and smarter than my rural peers. It wasn’t hard, really. I still do, to be honest… At least, in certain ways. In other ways, I’m a total idiot, and they’re geniuses.

Popular myths about childhood — as it’s portrayed in movies and television — bear no resemblance to my own experience. Except Game of Thrones. Austin is so right about that one. Let that sink in for a while. Probably the most real time I had in school, was when we studied Lord of the Flies in English class. I kept looking around the room wondering which one of my peers correlated with which character.

Well, it’s a lazy day, and I’m low on resources after my hyperdrive extravaganza yesterday. So, I’ll stop here.

More to come. Just wanted to mention I’m reading this book. And you should, too.

🙂

In praise of pressure

vice holding blockSome folks love weighted blankets. I’m a fan of lying under heavy-heavy blankets, myself. And I look forward to the summer, when I can have my air conditioner on full-blast and cover myself with lots of layers. It helps me sleep. Ironically, I can’t do it in the winter, because the heat is up in the house, and I have to use fewer blankets. I just can’t bring myself to run the A/C in wintertime. There’s something very wrong about that idea, in my head.

Some folks love the feel of a firm squeeze. Temple Grandin, for one. Plenty of others, too. Getting a monster hug does some autistic folks a lot of good. Me? I’m on the fence about it.

The pressure I prefer is of the existential type. Having more to do, than I have time for. Having higher expectations of myself than are realistic. Demanding more of myself, than most “reasonable” people would even think to require. Setting impossibly high standards for myself, then pushing myself to live up to it — regardless of my apparent abilities or human capabilities.

I put all kinds of pressure on myself on a regular basis. And it does me good. Most people get a little concerned, when they hear about everything I’ve got going on — which is why I don’t tell many people about everything I’ve got “cookin’ on the back burners” of my proverbial mental cooker. I don’t tell most folks about all the activities I’m involved in — volunteer activities, town government meetings, multiple creative ventures, a variety of in-depth studies that have been going on for decades, a handful of blogs, a whole lot of web domains I manage, various stuff I help others with, events I help produce, and so on.

Yeah, it’s a lot. Looking at it all laid out in linear fashion, it looks huge. But when you overlay everything with everything else, in 3D (or 4D/5D), it all fits nicely. A neatly packed, snug package that is my life.

It’s all so much a part of me, so much a part of my life and my daily flow, I just don’t know what I’d do without all those activities. I pick up one thing, and I love it. Then I pick up something else, and I love that, too. Why not do them both? Why indeed? So, I do. And a few years go by, and I pick up something else. And do that, too. I don’t drop the other things… just keep going with what I’ve already got. And it adds. It builds. The pressure mounts.

Which is how I like it. I swim in such a vast sea of sensory inputs — physical, emotional, mental, psychic — that if I didn’t have a Specific Point Of Focus in my life, I’d spin out. Seriously, I’d lose my coherence, and I’d lose my cool.

person jumping into focus
The pressure helps me focus – otherwise, I live in a blur

All the world is a blur for me, if I’m not focused on a specific point(s) in my life. A specific goal. An intended outcome. It doesn’t matter if that outcome is impossibly out-of-reach. I have to make the jump. I have to push myself. I have to extend myself. I have to leap into the gap, to see if I’ll make it.

Sometimes I don’t. Sometimes I fall short. I often do, in fact. And I’ve learned to come to terms with my shortcomings, my short-falls. Because they’re the inevitable outcome of so many of my over-reaches. The over-reaches that save me. That make life worth living for me. The pressure that thins the thicket of static that’s always around me, no matter what.

I’d never want to get rid of the static. I’d never want to leave the thicket. Many people have encouraged me to “relax” and “not rush”. Okay, okay. Fine. I’ll pretend to not push myself. I’ll pretend to not care with all my body and mind and heart and soul, whether or not things go exactly the way I want them to. I do a great impression of that, even while on the inside I’m pushing and pulling and fretting and vexing myself over every single detail. I need that push-pull-fret-vex mix. It keeps me focused. It keeps me steady.

The times when I am most unsettled, are when I can’t get that pressure. When I’m just settling in for an even-keeled haul, pacing myself, chilling out. Those times, like when I’m just hanging out with my partner, talking about the day, relaxing and keeping “my energy” mellow for her sake, before long, I feel like I’m coming out of my skin. Because I’m open. To everything. Every last little stimulus, every last little piece o’ static that’s flying by. Like dust floating by one of those electrical air cleaners that attracts all the particulates to its surface, and it has to be washed off on a regular basis. That’s the stuff you’d normally be breathing in. Oh, for heaven’s sake… Ick. Disgusting.

That’s me — an electrical environmental cleaner, attracting every piece of floating ambient minutiae to my system, till it gets glommed up with all the static. All the detritus. All the emotional “off-gassing” from my surroundings.

People just do NOT take very good care of their emotional health, lemme tell you.

And I pick up on it all. Unfortunately. Especially from those close to me — like my family. Like my partner. Like the people I work with. They love having me around them, because I clean their environment. I pick up on all their static, glom it onto my system, and they feel so much better when I’m done interacting with them.

Never mind how I feel. That’s not part of their equation. Because they aren’t aware of what an emotional trash fire their lives are, anyway.

Yeah, it builds up. And unless I can get my Daily Dose of pressure to block it all out, it blocks me up.

That’s where intense exercise comes in. If I don’t physically push myself, first thing in the morning, every single day, I pay for it. By noon, I’m an emotional wreck.

That’s where overloading my daily schedule comes in. If I have too much time and energy on my hands, I start to notice things that have nothing to do with me, but I pick up, regardless.

That’s where the unrealistic expectations and over-ambitious undertakings have their greatest value. It focuses me — fanatically — on my Primary Purpose. It lets me build fantastic castles in my mind, looking towards an amazingly glorious set of achievements that only I know about, that only I will ever fully appreciate, and which nobody else in their right mind would even entertain pursuing.

In blocking out everything that has Nothing To Do With My Own Ambitions And Goals, I cut down on the energy I have available to spare on other people’s superfluous “stuff”. I get to focus my attention on myself, instead of being drawn into everyone else’s self-created dramas that are there for entertainment purposes, only. I get to Live, not die the slow death of imagined dramas, slights, insults, barriers that everybody else seems to prize and live on, as though they were oxygen itself.

That slow death is its own sort of pressure, I suppose. People need it. They crave it. It jacks up their adrenaline and helps them block out the distractions of life. It pumps them up and makes them feel more alert. And I can understand that. The thing is, those dramas, slights, insults, and barriers are theirs, not mine. They have nothing to do with me, and I can’t be dragged down into them. I’m too busy getting my own dose of pressure — the never-ending squeeze of pushing a wider vision of life through the narrow gap of what everybody else thinks is possible.

Give me my pressure. Give me my possibilities. Life is waiting. And I haven’t got time for the static.

Not today.

Not ever.

The body is the vehicle – vessel – the path

Rather than the body being
collateral damage in
this process of awakening,
it is instrumental.

The biggest shift in the entire
process of Waking Up to the
new reality is realizing
the body is the vector
for enlightenment. It is
literally the delivery mechanism
by which we experience
the vastness of
who we really are.

– Lori Ann Lothian

#Autistic Body #Autistic Brain

electricity voltage sparking across gapsI’m not sure why more isn’t discussed about the physical autistic experience. Maybe it’s because the folks getting funding aren’t aware of how big a role our physiology plays in shaping our psychology. Maybe they don’t know how much their own bodies affect their thinking.

Maybe their creed prohibits them from admitting it, and they take as gospel the disavowal of the body for the sake of the soul — never asking, never plumbing, never peeking beneath, what the source, the root, the base of that rejection might be:

Pain.

Discomfort.

Overwhelm.

The kind of pain-discomfort-overwhelm that overrides the will, that injects the sudden need to think something – do something – imagine something – block something into the process of living, even before conscious thought has a chance to form.

The kind of unsettlement that blocks the awkward thought even before it has a chance to register, which protects us from our own silent suffering with a blanket of unawareness. Distraction. Something Else to think about that has Nothing To Do with what’s happening now. Right now. In the body. In the system. In the vessel, the container, the vehicle for our daily lives.

Autism is like that — at least, for me. It’s a never-ending stream of impressions and sensations and clues and cues that my body cannot ignore. And it doesn’t want to. Waves … Yes. Waves. That. Those. The continuous connection to All That Is, in every conceivable way — especially those that have nothing to do with what the average block-of-wood body walking around freely admit exist… numbed and succumbed as they are, in the ways they can tolerate.

I am not like them. I am not like most people. 67 other people, for every one of me. IF the numbers can be trusted, which I’m not sure they can.

I am not the sort of person who can block all that out, or pretend it doesn’t exist. I’m not the kind of human who can ignore the signals I pick up — even if I wanted to, my body is tuned to them, attuned to them, always able to sense and decode and interpret and then pick up some more again… a never-ending stream of electrical impulses running through my system — body and brain — shaping me, connecting me, affecting me.

It doesn’t stop.

It never stops.

Even when I sleep.

If you wish to plumb the depths of the autistic brain, look to the autistic body. Consider the effects of traumas — large and small, starting from the very moment we begin to become aware. Consider the effects of stress — of every ilk, including the “stuff that shouldn’t matter”. Because it does. It most certainly does. To those of us who cannot block it out — who tried, for years and years with drugs and alcohol and all-consuming passions and self-abnegation… and now (once we’ve acclimated and discovered Better Ways to modulate it all) wouldn’t, even if we were given the chance.

The autistic brain starts with an autistic body.

Before the mouth says strings of words that make coherent sentences.

After the mind learns how strings of words made into sentences — whether spoken or read — can soothe the burn of the Surround.

Before the expectations of Everyone Else are decipherable as express demands, they register with us as wordless wants.

After the Tyranny of the Collective makes itself known as that indecipherable amalgamation of arbitrary caprices, all of which have thorns that prevent us from grasping — at-tall — they pre-register with us as a looming storm cloud flashing with electric threats — will that pinpointed fork of searing failure strike close or far? will it strike us at all? or can we obliquely slide on past with pre-rehearsed stock answers to questions we barely hear and cannot interpret before the askers need our Reponse?

The brain, the body — both work so tightly in concert with one another, it’s impossible to separate them. Not for us. Not for anybody. But for autistics, it’s inescapable. We’re wired. We’re connected. Within. Without. To ourselves. To everyone and everything else, God Help Us.

Seriously, neurotypical world, you’re a mess. Clean up your act. Why do you think we’re so autistic? Because we have to deal with your trashy, unkempt psycho-emotional lives, the trashed-out world you force us to live in, the detritus of your egos, the flotsam and jetsam of your latest attacks on whoever appears to be floating by your panic-stricken hair trigger lust for destruction.

You’ve declared war on your own bodies, and consequently, ours. And the results… well, just look at them. You don’t much like them. But rather than addressing the issues you’ve caused — pollution, destruction, malnutrition, indentured servitude at every level of society — oh, no — you’d rather “cure” us. Eradicate us. Send us off to be electroshocked, or ply us with junk food till we comply with your selfish, self-centered, self-delusional versions of “what should be”.

That shouldn’t be.

Nor should we be subject to your whims and wishes. You’re a trash fire, you neurotypical head-cases. Cutting yourselves off from your bodies, cutting yourselves off from the natural world, cutting yourselves off at the neck, and pretending nothing exists below.

. . .

Ah, never mind… what is… well, that is. That rant is just the corticosteroids talking. I’ve been on a topical application for poison ivy for two days, and I’m experiencing an interesting mutation of “roid rage”. I’ll stop now. Take a breath. Remember, that’s my body amping up my mind.

Again.

. . .

Where was I?

Oh, yes — autistic bodies, autistic brains.

Long story short — the foolishness about how autism is All About The Brain needs to stop. The hallmark of our essence is an all-pervasive connectedness with everything. Everything, I tell you. You cannot separate the autistic brain from the autistic body, and you cannot solve the mysteries of our being, unless you look at our physiological state — first and foremost. The body, its pre-conscious, anticipatory, protective instincts are what compel and propel many of us in our own unique ways. And until you wrap your heads around that, you’re never going to “get” us. Nor will you accept us. Nor will you accept yourselves.

Autistic bodies — autistic minds.

Come to terms with us and our reality, and you might just learn a thing or two about yourselves

Okay, NOW I can blog

pencil on paperI’ve had a week and a half off my regular full-time job. That means, I’ve been able to actually SLEEP during the day when I am exhausted, instead of pushing through by any means necessary. I can’t drink a lot of coffee, because it triggers migraines with me, so I generally resort to (well-concealed) feelings of anger / rage / irritation — stress. The stress hormones “perk me up” and keep me going.

But it’s hell on my system. Mental health included.

And by Wednesday afternoon, I’m done. Completely Done. I wonder if any able-bodied folks out there can imagine what it’s like to try to function in a zombie state 2/5 of their working lives… and then spend an extra day (usually Saturday) trying to recover?

Huh. Prolly not.

Well, the abilities of others are not my concern. I’m my concern.

And right now, I’m absolutely delighted that I’ve made good progress on a book I’m writing. I’ve had it in my mind for nearly a year, now, and I’ve made intermittent progress on it, over the past months. But this past week, especially, I’ve had the opportunity and the space/time to really focus on it. Put everything else aside, including my blogging and hanging out on Twitter, and focus on this Work.

I’ve got a lot of Work I’ve started, on and off, over the years, and I spent some time this past week categorizing and organizing and prioritizing. I’ve got my list of projects down from 70+ to <20. And I’ve crossed off a handful of the less pressing ones (I can do them later). So, I’m really down to 7 books. That’s real progress for me, the Queen of Creative Over-Commitment.

And that feels great. Because it’s attainable. It’s achievable. And a number of these projects actually interconnect with each other, so I can cross-reference them and use each to build on the ideas in the other(s). They become an interlocking framework of a larger corpus of work that’s been coming to conceptual life in the back of my head for … decades, now. Seriously. Some of the pieces have been incubating for 20 years. And now completing them is actually in view.

Glory be.

Another cool thing happened to me, this past week. My partner actually told me that she thinks I’m the healthiest I’ve ever been. I was talking about how I’ve lost 20 pounds in the past year (just cutting out junk food, chocolate, riding an exercise bike each morning, and swimming for 15-20 minutes a couple times a week has done me a world of good). I was saying how I didn’t feel as strong as I’d like to be, and she told me she thinks I’m doing so much better than I’ve ever been. I’ve only had a couple of intense meltdowns / blow-ups in the past 12 months, where I used to have them every month or so — sometimes more often. I’m healthier, I’m happier, I’m more calm. I’m also more focused than ever on the top priority writing projects I need to complete. I’m doing better at work than I have, probably ever. I’m being much better about managing my life, overall.

And it occurred to me that it’s no coincidence that all this has really come together in the latter 1/3 of the year. I finally got an Asperger’s assessment from a qualified professional at the very end of July, and although I’ve known for many, many years (since 1998) that I’m squarely on the Autism Spectrum, having an official DX has actually made a huge difference with me.

It’s helped me finally get validation that I’m not confused about who I am and what I’m about. I’m not making things up to get attention and/or sucker others into taking pity on me or offering me assistance (financial, medical or otherwise). I would never want that, anyway — I hate attention (especially the medical kind), and I hate having people expend any extra energy or money on me. Society at large could never notice me, and I’d be fine with that. Just fine. Plus, I can make it on my own fairly well. I’m fiercely independent, which none of the medical professionals seem to understand when I talk to them about how I want to manage my health.

But always, there’s that implied accusation of attention-seeking or resource-grubbing that comes up, when people question autistic folks’ intentions around getting DXed. Like it’s a sign of pathology, rather than an earnest desire to understand yourself and do a better job of managing your issues.

Getting an official Asperger’s DX has helped me understand my situation in terms of an overall meta-pattern that places me in a context that makes sense. I’m neurodiverse (thanks Judy Singer for coming up with that term!). I’m not the same as every other neurotypical out there. And I shouldn’t expect myself to be. I’m not in any kind of a competition with anyone, and I am finally officially (I have the letter) relieved of the imperative to “keep up”. Screw that. The only person I want to keep up with, is myself. And that means dropping (wholeheartedly) out of the rat race of allistic over-achievement. (Plus – note to the world: Unless you’re one of the Overlords, or you fashion yourself to emulate them 100%, you’re going to end up roadkill, like the rest of us vulnerable folks who aren’t paying attention and let down our guard at the wrong time.)

Having an Autism Spectrum DX puts me in my own space, my own individual condition. It carves out a niche for me to fill — by myself, for myself. And it gives me the license to unleash my Royal Aspieness in all her radiant glory. I don’t have to work overtime to keep pace with the non-autistic world. I’ve shifted into my parallel universe — and parallels, by definition, never intersect.

And that makes me so, so happy! Because trying to wedge myself into the non-autistic world all these years, has just visited showers of hellfire and brimstone upon myself and everyone around me. Truly, it’s made us all miserable, from childhood on up. And from here on out, as of 5 August, 2016 (when the DX letter came about a week after my assessment), I don’t have to do that anymore.

I don’t have to live with the sneaking suspicion that I’m really full of shit and just looking for my own special way to be my own special “snowflake”.

I don’t have to contend with the creeping doubts that make me question my motives and my judgment.

I don’t have to pretend up “up for” things, when I am so wiped out from just dealing with the world that all I want to do is curl up in a ball and weep in a dark room for days.

I don’t have to bother pushing myself for no good reason.

I don’t have to put in a performance extraordinaire to be mediocre at crap I don’t even care about, whilst completely overlooking the ways I can be bright-and-shining brilliant, superlative, over-the-top wonderful.

I can let that shit go. I can focus on being happy and healthy and guarding my light, so it can shine all the brighter.

And bonus – the rest of the world gets to benefit, too.

I just finished a really decent draft of Chapter Four of my developing book (two more chapters and a conclusion to go!). And I’m happy. Tired, wiped out, shaky… but happy, so happy.

Now I can blog, hang out on  Twitter… and go have a nap.

It’s all good. And that pleases me greatly.

Woo hoo! 150 pages of intermittent trigger warnings

Image of person walking with streaks around them
It’s walking a fine line, here…

So, I’m working on “Into the Deep“, my memoir about the experience and impacts of a super-sensory day, and I have to say, the thing is chock-full of trigger-warning type situations. Not every single page, but there’s something in just about every chapter to warrant a bit of a warning.

I’m conflicted about how best to handle this.

I mean, I don’t want to be a jerk about it and not tell anybody what they should watch out for. Some of the stuff I talk about is relatively “mild”, according to some, while other passages still set me off a bit. Indeed, the whole point of the book is actually to both “take you there” — to relate the experience in ways that are intimate, experiential, palpable… to make people more than a little uncomfortable in places… and to explain the source of the discomfort.

Indeed, what’s the point of explaining the discomfort, if I don’t make it clear how… uncomfortable it is?

It’s hard to know how to handle this. I guess I’ll offer a potential trigger warnings listing in the introduction, for those sections that seem a little edgy to me.

I don’t want to overestimate people’s ability to handle this stuff.

But at the same time, I don’t want to underestimate the impact of what I’m writing.

It’s all a careful balancing act, I suppose.

This week in the laboratory – Week of 17 July, 2016

microscope front view looking into the eyepieces

Lab Notes Recap: 17-24 July, 2016 : My special interests tend to be intense for a few months, then fade to the background, when another special interest comes up. My skittishness gets more pronounced when I’m under a lot of stress and duress. And interestingly, I can get so consumed by a new interest that I completely forget about past passions, no matter how intense they were. I can also swing from one extreme to the other — probably because my passionate devotion exhausts me, which then sends me spiraling down into an abyss of Why-The-F*ck-Bother?

This week has been an exercise in that.

I’ve gone from being on a full-force mission to obtain an official Aspergers diagnosis — setting up an appointment for late September… to realizing that I have neither the time nor the money to work with that particular provider… to finding another provider who is more accessible… to wondering why I should even bother, if I’ve been trucking along in okay Aspie form, all these 18 years. At this point, isn’t it almost superfluous?

I’ve gone from having extremely detailed ideas about what I want to document in my Aspergian life to share with others… to feeling like that exercise would be less than pointless, and everyone just needs to fend for themselves and be done with it.

I’ve gone from rekindling my old intense interest in the Resistance to the Nazi regime and coming up with guerilla tactics to block the rise of fascism in this country of mine… to scouting out available real estate in the Canada maritimes where my partner and I can relocate if El Trumpo gets into office.

I’ve gone from despairing of every writing anything decent again… to figuring out how a new approach on a book I’ve been working on, for quite some time. I now know what direction to take with it. Exciting! This unblocks me on a project that’s been near and dear to my heart for nearly 20 years. Now I need to find the review copy I had been working on, months ago (it’s got to be here, somewhere), and go back to marking up my changes. This could work… this could really work… I could have it finally finished by the end of the summer. Then again, do I really want to bother?

I’ve also re-discovered the roots of a passionate special interest that never died with me, just go buried under the detritus of everyday hassles and distractions. And I bought myself a tasty stack of books for a very low price (averaging $3.50 per book!), which should be arriving on my doorstep next week.

I’ve gone from wanting to cancel my Facebook account completely… to wanting to un-friend all the hate-spewing connections (I won’t call them “friends”) I have… to deciding to just keep my account but not check it that much, except to message the actual friends I have there.

I’ve gone from wanting to drop out of Twitter permanently… to realizing I have some healthy and helpful connections there, so maybe I should just check in on the little DM chats I’ve been part of. Blocking some folks. Muting others. Trying to figure out how to mute the hate and contentiousness, while maintaining connections that add to my life and happiness and sense of purpose.

And so it goes… up and down, ’round and ’round…

I just need to take care of myself — and also remember that I need to re-train myself out of the “marketing mindset” I’d adopted in my work, over the past years. I work in technology, and I’ve also been part of digital marketing divisions for years, so because of my day-jobs, I’ve adopted this perspective of needing to poll everyone else about what they want, what they think, what they are looking for, so I can tailor my offerings to them.

For my own creative process, this is murder. Murder, I tell you. I can’t live like that. I can’t create like that. I need to write and draw and paint and compose freely, without concern for what others think.  Non-commercially. Without getting all wrapped up in what others are looking for and/or will pay for. It’s a stifling pox on my mind and heart, and I don’t want to do it, anymore. That’s why I have taken the jobs I have, over the years — to free myself and my art and writing from commercial constraints and the need to please others, lest I fade to nothing in their eyes and cease to be a “viable” creator in the estimation of others.

And that will never work.

These things take time. Re-training myself takes time. Allowing myself to be actually autistic on my own time, whenever I need to… that takes time. I tend to put others first — but not for unhealthy reasons. I just think that relationship and interaction deserves something higher and better than what we typically give it. There’s an art to relating, and that’s important.

At the same time, though, I still need a good dose of autism in my life.

Some self-referencing, some self-absorption to the exclusion of all else. So I can actually think.

Balance, balance… it’s all about balance. Well and truly.

This life of mine is still a work in progress. Should be interesting to see what next week brings.

 

Taking a more positive direction with my work / writing

3-dimensional rendering of a building interior with high walls and arches
My plans only look confusing from the outside. Inside my head, they are all very well structured and interrelated.

I’ve got a number of projects in the works.

The main writing project I’ve got going is Into the Deep (tentative title, which I’ve changed a number of times) – a memoir of a sensory day, wherein I describe my amped-up sensory experiences and overload… which ultimately culminates in a meltdown. Sorry for the spoiler, but knowing how it ends up is actually an important part of the entire book leading up to it. It dates back to circa 2008, when I was diving into my Aspergers and sensory issues with gusto. My focus, over the years, has been on describing the stresses and strains that accompany extreme sensitivity, coupled with environmental and logistical demands of just living your life.

I’m also working on compiling criteria for assessing the prevalence and impact of Aspergers / autism in a person’s life. I’ve compiled hundreds of different criteria from a number of well-known and trusted sources, and I’m in the process of grouping them into meaningful categories which pertain to the AS experience. I was full-speed-ahead with that one for weeks and weeks on end… then I ran out of steam, lost focus, and I’m getting back to it again. I’ll produce several different tools out of this — a spreadsheet with some calculations, so I (and others) can record and also chart issues in childhood, teen years, adulthood, and elder years… as well as an online version that will generate better-looking charts and have the ability to print out what’s been entered.

I’m also refining the AS “Spot Check” tool I built a few weeks back. I have a number of features I want to add to it, and I can think of additional ways it can be tweaked.

I’ve got some other writing projects in the back of my mind — especially relating to how women (and non-stereotypical men / non-binary) folks experience and present when they’re on the autism spectrum.

And of course, there’s always my own self-assessment work, which I’m doing partly to console myself about not having access to an Aspergers assessment, partly to get clear on my situation so I can manage my life more effectively, and partly to prepare for an eventual assessment which I will definitely be pursuing, as soon as I can get the money together and spend it without jeopardizing my health and welfare.

It only looks like a lot if you’re not in my head. Inside my head, everything fits nicely into an overall schematic that’s like the blueprints of a large and sprawling building. It’s very 3D, this schematic in my head — no, 4D, because it involves the passing of time, as well. I can literally see how things will evolve and develop over time, expanding from a framework of ideas into a real and literal thing. It feels awesome to have a clear view of what I’m doing and how it’s evolving and what it may eventually be (with some modifications, of course).

Something has been missing, though. And I realize that I’ve been paying far too much attention to the Aspie “issues” I’ve been dealing with, at the expense of the really wonderful things about being on the autism spectrum. There is so much joy, so much light, so much brilliance and enjoyment that comes from uniquely autistic living, why get bogged down in the issues? It’s not like I’m looking for services or assistance. It’s not like I need to prove my Royal Aspieness to anybody else. I’ve learned how to “pass” in the NT world, while knowing all along that I’m nothing — but nothing — like the people I’m emulating. And that’s okay. It’s like being fluent in a foreign language, so you can comfortably live abroad for six months out of the year. It doesn’t make me less of who I am. It makes me more, actually.

So, yeah. I’m letting go of the intense need to have an official diagnosis for Aspergers, and I’m just getting on with my life. And I’m reconsidering the approach I’m taking with my writing and other projects.  I want them to be more accurate, more truly reflective of what my experience is like on a daily basis — which is not the kind of continuously excruciating that I hear others discussing.

It’s awkward, yes, at times. And it’s lonely. It’s confusing. It’s consternating. But that’s life.

The “flip side” (imagine a record being flipped over on a turntable – if you can conjure that image from the dusty, distant past) is that I have so many wonderful, blissful, ecstatic experiences of unbridled joy, richness, intuition, grace, and just plain fun, that it totally, utterly cancels out the pain and frustration. And it does it in ways that make me never, ever, ever want to forfeit my Royal Aspieness.

Cutting the pain of autistic separation from the “allistic” world (I learned a new term in the past few days — “allistic” which equates to “neurotypical”, from what I gather)… solving the problems of Aspergers by reducing my autistic tendencies… it’s just not worth it to me. I’d rather have the pain, if it means I get to keep the joy. To be honest, the joy far outpaces, outsizes, outstrips the pain — a thousand times over.

I’ve written before about wanting to bring out the joys of Aspieness. But that’s not entirely true. What I want, more than anything, is to be 100% honest and show the full spectrum of Aspie life. Not just the struggles which are detailed to justify funding. Not just the problems that are raised in hopes of crafting solutions. Not just the ways we are put down, disadvantages, and disabled by societal norms. But the flip side of that, as well — the parts of my / our life that are so vibrant with irrepressible life, that we wouldn’t trade our autism for all the money or social acceptance in the world.

“Spectrum condition” is right. There’s far more to tell. So, in a sense, back to the drawing board, to chink the proverbial gaps in the structure I’m building in my life.

What places me

gedmatch-eurogenes-pie-chart

One of my special interests is analyzing my DNA.  I’m a GEDMatch junkie, compulsively running my numbers on a regular basis, then looking up the 200+ cultural influences that have helped make me what I am.

My family has always been interested in genealogy, especially my grandfather, who worked with a bunch of his cousins to compile as complete a genealogy of their family as they could, back to the earliest ancestor they could reliably identify. The book sits on the “Ancestry” section of my 5th bookshelf. It strikes me that the task is considerably easier if you’ve got a bunch of Aspie traits… all that work, all that focus, attention to detail… not just anybody can do that. There’s a reason why I never thought of myself as particularly weird when I was around my family — because we ALL were/are!

Someone asked me a few weeks ago why I’m so interested in my genetic history. They seemed befuddled by my exuberance about it… talking about my distant ancestors, like they were aunts and uncles I met with regularly. Why should it matter to me? they wanted to know. Isn’t being here, now, enough?  Personally, I couldn’t fathom how they couldn’t be fascinated by their past, especially considering that they’re a refugee from their home country. Wouldn’t they want some connection with their past?

It seemed like they didn’t. It seemed like they just wanted to move on. And I had to really think about why I care as much as I do about my bloodline. I have no children. I’m on good terms with my biological family, but I don’t feel a strong sense of connectedness with them or their family traditions and ways. My grandfather passed away several years ago, so apparently only I — the only one in my family with no kids — is actually intensely interested in this “stuff”. Why does it matter so much to me?

Well, I’m not the only one. Every now and then, I’ll come across someone who’s as fascinated by history and cultural legacy as I am. One of my staunchest comrades in this regard was a guy I’ll call N, who I worked side-by-side with (literally) for a number of years at a pretty cool job. We were both fascinated by our European cultural legacy — I by my German, Italian, Swiss, French roots, and N by his Irish/Celtic roots. We compared a lot of notes over the years, and we’ve kept in touch, probably because that was such a strong connection we shared with each other — and with just about nobody else.

Thinking about our shared deep interests in genealogy and cultural heritage, I am struck by the ways in which we were both so similar, and yet so different. The same kinds of things drew us to connecting with our histories – however distant – and not until I sat down and thought about it, did it start to make sense.

Both of us had been rejected by our parents. Both of us had been erased from our legacies — not once by several times, not completely, but in a hundred different symbolic ways.

You see, N was one of the former altar boys who had been abused by Catholic priests, so many years ago. He was one of the claimants who received a monetary settlement from the Catholic Church. He was one of the ones who was never believed as a boy, whose parents punished him for saying — even suggesting — that a priest would do such a thing. His father never forgave him for saying anything, let alone suing the Church. His life was an ongoing struggle for dignity and self-affirmation (not to mention trips to doctors for his entire life to manage the diseases the priests passed on to him).

As for me, I was in a different spot. I had chosen my separate path by myself. It was never foisted on me by a sick, twisted adult and then erased by denial and violence. I had simply chosen to live my life in a way that my parents could not accept. For years. Nor could they speak about me to others, because of the shame… and also the danger.

You see, my father was a founder of a struggling non-profit and the entire family was 95% dependent on my mother’s income as a public school teacher to survive. It was bad enough that I had married a man my parents didn’t approve of, and then divorced — my mother could not discuss my very existence in her own church and community, because of the shame and disgrace about my life choices. But when I came out as a lesbian, I wasn’t just threatening my own soul. I was threatening the well-being of my whole family.

My mother didn’t dare admit that I even existed to other people — not as I was. She could not introduce me in public to friends she ran into when she and I went out shopping during holiday gatherings. I’d stand off to the side, quietly waiting for her to finish talking, taking the cue from her turned back and her voice suddenly getting high and loud, that I needed to make myself scarce. If I was there, she’d have to admit that she had a lesbian daughter (who didn’t look very feminine, on top of it). And as a public school teacher, that put her job at risk. If she couldn’t be trusted as a mother to raise a heterosexual, straight-looking daughter, “What would she do to her students?!

My presence put everything at risk. For her. For my family. For my parents’ retirement. For their safe and healthy future.

My parents’ refrigerator was always covered, top to bottom, with pictures of the kids and grandkids, friends, and other relatives. But not me. Not my partner. There was no sign of us in the photos, even though my mother always took a lot of pictures of us, when we got together. My partner and I were invisible. We didn’t even show up separate, in photos on different quadrants of the fridge. And even when we came to visit, there was never an attempt to change around the pictures to make us feel welcome. Or wanted.

My elderly relatives, who had always loved me so much, turned their back on me, when I demanded they acknowledge my long-time partner’s existence. After 20+ years together, great-aunts who had once been my favorite aunts, refused to acknowledge my legally married wife, and one of them literally turned her back on me at a family gathering and never said another word to me. I was told in no uncertain terms to not contact people who had once meant so much to me. Not after I’d left the only acceptable way of life they were convinced I should follow.

Family aside, I am out of place in general. And the subtle erasures happen constantly. The hetero-normative assumptions about what should and should not matter to me. The assumptions that my wedding ring means I’m married to a man. The assumptions that, as a female, I would want to wear dresses and behave like other women. My gender differences have been glossed over / erased, since I was a kid, surrounded by pink things, girls’ toys, forced segregation putting me in an oversized dollhouse to make tea and arrange pink household replica toys, while the boys all ran and played. I left my mark as who I really felt I was, as a kid — I took my Mom’s Magic Marker and penned my real name — Billy — on the wooden frame of the family bulletin board. It’s still there. Indelible ink. It was the one way I had to say, Nobody could erase Billy — the identity I wanted to live back then. Not ever.

Billy’s long since gone… dissipated into the ethers and integrated into the core of my being in myriad small yet pronounced ways. But the erasure continues… with subtle hints that maybe I really am interested in feminine things and pastimes, I’m just repressed and feeling pressure from the lesbian milieu I travel in. Because what woman wouldn’t want all those things — pretty dresses, nice shoes, jewelry, a hairstyle (not just a haircut)? What woman indeed? I must just be emotionally stunted or somesuch. How can you defend against that never-ending stream of pressure that masquerades as “gentle suggestion”? They mean well. I’m sure they do. They want me to have the kind of happiness they have. They just don’t realize they’ve erased a little more of me, with their assumptions, and I haven’t got the energy (or inclination) to restore that picture of me that may or may not make a bit of difference in their minds.

I have precious little space in the immediate world that actually appeals to me as it is. I must always modify it, edit it, tone it down, or amp it up, look for some redeeming quality that acts as a saving grace, in order to inhabit it. It’s too loud. It’s too bright. It’s too painful to the touch. It either smells like nothing, or it smells like too much of what it is. I either can’t taste it, or the taste is overwhelming. And the space I move in leaves me with bruises that I don’t remember getting — I bump into things, and move on. I barely feel it, half the time. Sometimes not at all. And the next morning after a long work session, I can see where I stumbled, where I slammed my knee against the door frame, where I misjudged the distance and marked up the insides of my forearms with the blunt ends of tool handles.

The world as it is — immediate and with its own set of ideas about how things should be — doesn’t exactly make room for me. And even as it erases me, it smiles in a friendly way, with supposed good nature — it’s all “for my own good”. Because it cares and it wants to help. It only wants me to be happy. But it knows precious little about me. And it doesn’t care to find out. Because ultimately, it really only cares for its own good. To be perpetually re-inforced and supported in all its flawed and dangerous assumptions.

And so I lift up my eyes and look to the distance — behind me, where are the patterns? Where is the place that people like me come from? Where is the place that the aggregate of history I call “mySelf”, comes from? I have no way of knowing where exactly life will take me. Unlike my siblings (and my friend N), I don’t follow the path laid out by my immediate predecessors. I have no children to add my existence as a meaningful part of the unfolding human experiment… No children to even prove I existed, generations from now. My own particular version of my bloodline ends with me. This is it. And there it is. My siblings have ensured that our line will continue with a bunch of kids. And I find comfort in the fact that — perhaps because my one sister and my brother and their respective marriages are near exact replicas of our parents’ — my niece and nephews are turning out so, so similar to me, with the same sorts of sensitivities, the same sorts of disturbances, the same sorts of convictions, the same sorts of in-your-face defiance that does what it feels is right. They’re much more like me, than they are their parents. And that comforts me in a disquieting way.

And that legacy will go on. Through them.

But that offers me nothing. Not personally. Not directly.

I lift up my eyes and look to the past — far, far into the past that most have forgotten about, because they can afford to. They don’t need it, so I’ll take it. I look to the legacies that were left behind by who-can-say how many influences. And I examine the parts of the world that each of the 200-some ethnic influences in my DNA hails from. I roam around the internet, uncovering independent researchers who geek out on this stuff for fun, saying online on their own sites and blogs, what the universities will never pay (or allow) them to say on the job. I find others looking through GEDMatch.com who are every bit as fascinated as I, and are overjoyed to connect with a clear distant cousin who shares so much of their genetic building blocks.

In the patterns, in the textures, in the warp and wend and weft of the fabric of all humanity, moving, moving, moving… without ceasing, without end… we weave, we weave, and sometimes we mend.

Of course, my friend N and I have always wanted to connect with our histories. Because our world has so often refused to fully accept us. Our own pasts sought to erase us, to tell us we were wrong, to subtly and grossly discount our lives and our versions of our lives, so that we wouldn’t upset the status quo… keep things progressing per usual. And our presents aren’t nearly as accommodating to us, as it would be if we would just behave and do as we’re told.

N married years ago. My partner was the DJ at his wedding, and he’s now got two sons. And he still has his legacy, his history behind him, to raise him up and move him forward.

I have my raw DNA data. I have my books. I have my bookmarked online tracks I have left, each of them providing markers that point me back to the North Atlantic, West Asia, the Baltic, Mediterranean (East and West), South Asia… and points beyond – even to the Red Sea.

eurogenesLa-Brana-1 is there — a protoEuropean man with both European and African DNA.

Irish. Orcadian. French Basque. Catalunia. Galicia. Troublemakers, traditionally.

Algerian. Tadjik. Mozabite Berber. Chechen. Tunisian. Moroccan. Nogay. Afghan Pashtun. Ossetian. Punjabi Jat. Brahmin from Uttar Pradesh.

It’s all there. It places me. It grants me residence in territories where I could never belong in person, right now. In places where I’d be killed. Or worse. It places me. It gives me the right to be there. To be here.

And no one can deny it, or take that belonging from me.

 

If you click the image below, it will show up in your browser, where you can enlarge it, if you like.

gedmatch-eurogenes
Click this to see the full listing