Is there an #autistic way of being friends?

four groups of four people, with one person in front
Friendship means different things to different people

I want to take a step back and reconsider something that comes up a lot in discussions about Autism / Aspergers – the concept of friendship. I’m not sure we’re thinking about this clearly. It could be that we’re applying neurotypical measures and values to the criteria for who’s a friend and what friendship constitutes. And I’m not sure it’s serving us. I think it may be causing a lot of us to think we’re lonelier (and more alone) than we really are.

I am beginning to suspect that Autism / Aspergers comes with its own unique brand of friendship. And that distinct “friendotype” is no less valid than the neurotypical type — it can be every bit as fulfilling, and it might just help to make the world a better place.

The sooner we stop measuring our friendships by neurotypical measures — and we quit feeling badly about who we are because we “don’t measure up” to non-autistic standards — the happier we’ll be.

At least that’s what I think.

Let me speak for myself. I suspect others will agree. Hear me out.

Let’s look at the dictionary to see how “friend” is defined:

friend
noun
a person whom one knows and with whom one has a bond of mutual affection, typically exclusive of sexual or family relations.

Most people would not say they “know” someone until they’ve spent a great deal of time with them, been through a number of good and bad experiences with them, and have “gotten to know” them. But most people aren’t autistic. Most people aren’t empathic. Most people aren’t so highly sensitive to others, that they can “pick up” on what’s going on with that other person in an instant.

As for the bond of mutual affection, most people (in the neurotypical model) spend a lot of time withholding their affection. They’re stuck in the idea that they’re separate and apart from everyone and everything around them. And crossing the chasm of interpersonal differences is a monumental effort for many. So, bonds of mutual affection don’t get created for quite some time, until certain criteria are met.

Exclusive of sexual or family relations — that’s actually easily dispatched with many autistic folks, as we don’t automatically interact with others in a sexual way. Unless we’re hypersexual autistics (it happens — I used to be that way, years ago)… then things get trickier. But nowadays, I have no more interest in having sex with random people I meet and connect with, than I have in having surgery. The two seem equally intricate and intimate to me, as well as potentially painful and … fraught.

So, on those three official criteria strike me as particularly neurotypical in nature. And they don’t allow for any autism (or empathy, for you non-autistic empaths in the audience) in the definition. Again, it’s a case of mob-rule assumptions about how people are, how they behave, and what “should” happen as a result.

Now, let’s talk about the “folk” definition of friendship. Friends are people whom you feel you can talk to about anything, who can — and will — step up and support you in your hour of need, thanks to the personal bond you have with them. They’ll come to your assistance, no matter what. And they’ll put up with your sh*t with long-suffering grace, because, well, they’re you’re friend.

And you’d do the same for them.

Here’s my issue with this model:

First, not everyone is completely unable to connect with others, except under select circumstances, after years of history with them.

Some of us can actually connect with others on a deep personal level, regardless of how well we know them or how long we’ve known them. It can happen very quickly. It does happen very quickly for many autistic folks. We can be highly empathic. We can sense our similarities and connections with others. We can co-experience others’ moods and state of mind/body/spirit. And we can establish a really close bond with those others almost instantly. (It’s a lot less wonderful than it sounds, by the way. It can be pretty confusing, frustrating and tiring.)

Because we can empathically connect with others, we actually meet the first official criterion for friendship — we know (yes, literally know) other people on a deeply personal level. And it can happen much, much more deeply than in neurotypical cases.

Second, we actually can have “a bond of mutual affection” with the people to whom we connect instantly.

Not only can we feel a bond with them, but they can feel a bond with us. We see them. We know them. We can co-experience their lives and widen our own in the process. And others may really respond to that sense of connection. People crave understanding. They crave feeling known and recognized. They hunger for the type of acceptance some of us can offer them, and they thirst for that sense of being “seen” as who they are. They get what they need from us, when we’re empathically connected with them. And that can form a close, almost uncanny bond that’s a welcome change from your standard-issue alienation that most folks marinate in, socially speaking.

For the record, this is not a “faux” connection. It’s real. It’s genuine. It’s unique. And for some of us on the spectrum, it can be a way of life. Everyday autistic life.

Of course, empathicness doesn’t necessarily pick and choose between fun people to connect with and the miserable people who cross our paths. So, we can end up inadvertently connecting with and forming a bond with toxic people we should run from — but who feel a deep connection with us, because we’re co-experiencing (and hence supposedly validating) their experience.

And then we come to the absence of family / sexual relations.

This may actually be the crux of why autistic friendship patterns can be so different from non-autistic friendotypes. It seems to me that non-autistic people are much more closely aligned with people who are related to them by blood, or who have had sex with them. In fact, it seems at times as though some allistic folks use blood ties and sexual relations as a way to build their social circle.

If you’re related, somehow that overrides countless other considerations (is someone an a**hole? are they a predator? a moocher? a problem?) Apparently, there’s some inborn obligation to put up with them, to interact with them, to keep them in your social circle… as long as you’ve got a blood connection with you. Likewise, if you have adopted siblings, others may treat them like they’re not really part of the family. Or if you’ve got a “step-parent”, according to some, they’re not really your parent. It seems arbitrary to me. And it’s based on something you cannot control, you haven’t chosen, something that fate’s pretty much foisted upon you. Maybe you get lucky, maybe you don’t. But according to non-autistic guidelines of who matters and who doesn’t, if you’re connected by blood/marriage, that counts for more than personality and/or what you bring to the dynamic.

And then you have “sexual relations” which are not just just having sex with someone, exchanging fluids, making babies, etc. It’s also about interacting with others in a sexualized way: flirting, innuendo, all those little hints and wink-wink-nudge-nudge vagaries that tend to frustrate and confound autistic folks. It seems sometimes like non-autistic people are constantly “on the make” — always looking for sexual partners, constantly talking about sex, joking and hinting and whatnot. It’s like they use sex as a shortcut to connect with other people… maybe because they can’t (or don’t want to) connect in other ways?

Am I onto something here? Autistic folks connect above the neck… Non-autistics connect below the waist…? Or am I just stereotyping and being unfair? There’s always that chance.

Or perhaps autistic ways of connecting are more… pervasive than non-autistics? We can definitely be more sensitive, more empathic, more connected to our surroundings, and that both facilitates and complicates the relationships we have with people around us… to the point where culturally driven, somewhat chance-driven designations like blood connections and who’s available for mating are eclipsed by the swirling flow of sensory input that override our attention for those social conventions.

Anyway, all this being said, I’m more convinced than ever that autistic folks have different friendship patterns which are not less effective or less desirable than non-autistic friendship patterns. They’re just different from the ways the majority of folks build and sustain friendships.

If we struggle with friendships, it’s not because we’re doing it wrong. It’s because we have different patterns, different priorities, and others can’t accommodate / match us. The problem — again, there’s the social model — is that the relationships we form can become one-sided, lopsided in who’s doing how much work, and who’s actually benefit. An autistic person being drawn to a non-autistic person can be put at some kind of risk if that non-autistic person is incapable of understanding or reciprocating in a decent, humane way. Worst of all, is when the non-autistic person takes advantage of the autistic person, and the autistic person never realizes, because they can’t imagine why someone would do such a thing.

In any case, I’m continuously revising my understandings of things, and friendship patterns are just my latest fascination du jour.

Tomorrow, it might be something else.

I’m sure it will.

But for now, just for today… this is my revised understanding of friendships, on the rebound from my somewhat dismal declarations yesterday.

It’s a process. I never stop questioning, never stop learning. So it goes.

Very friendly… very few friends

person standing along a fencerow with a sunset in the distanceI caught sight of something on Twitter, this morning: A mention of knowing lots of people, but not having many actual friends.

I’m the same way. I know countless people. And even folks I don’t actually know — well I tend to get along with even them. Other people apparently love me, from what I can tell. I’m open, accepting, tolerant, I let them be who they are, and I can find common ground with them, no matter what our differences.

That’s great for the dynamic, but it doesn’t really do much for the actual relationship. I don’t know many people who actually know how and what I think about things, because it’s hard for me to put into words what exactly is going on with me. Writing is easier, but not everybody likes to read, these days, and anyway, social interactions are largely verbal, so…

The long and short of it all is that I have a lot of people who want to be my friends, but I have no interest in reciprocating. My friendliness is the extent of my interest in them. It’s not even necessarily interest in them, rather keeping the social interaction going. The vast majority of people I know would probably be pretty uncomfortable if they knew the truth about me and my challenges, which would end up isolating me a lot more than now. It’s just easier to mask and camouflage and simulate interest in interactions, rather than being authentically myself 100%.

Yeah, I know I should be past that. But seriously, I have a lot on my plate every day, and I just don’t have the energy or the interest in going that proverbial extra mile for the sake of authenticity.

Just get the interaction over without pain and bloodshed. That’s all I really want. I have no interest in being stigmatized, in being pushed aside, in being seen as less-than or disabled (even if I am really struggling, much of the time). And I’m a terrible activist. I lived in that world as a kid, and I’m done with it.

I really just want to get on with my life and do my thing, without having to worry about the fallout from my surroundings.

So, I continue on my way — very friendly, almost no friends. I’m very comfortable talking to strangers and striking up conversations… “connecting” with others in an impersonally personal way. But telling people what’s really going on with me? I’m not there… and I may never be.

So it goes. So it goes.

 

Ugh. Spring.

flower growing out of a bookYeah, I’m supposed to be elated that spring is here. I’m not going to capitalize it, because — much as it’s the convention, and being a formal season name and all — I don’t want to give it the “power”.

I’m supposed to be elated, but I’m not. If anything, I’m irritated.

Pollen is coating my car. That’s not good.

I get “gummed up” and mucus-laden.

Everybody’s running around like feral chickens with all this kinetic energy.

The days are (thankfully) not as long as they eventually will be, but they’re longer than I like. I need a better balance between night and day — preferably with a little more night than day. Longer days are a significant adjustment for me, and by the autumn, I’m pretty well worn out with my circadian rhythm skewed towards daylight.

If I had my d’ruthers, it would stay April forever – not because of Autism Awareness Month (heaven help us), but because the length of days and the temperatures and the precipitation are just about right for me.

But I don’t get my d’ruthers in this case, so I guess I’ll just need to be an adult about it.

Anyway, this is all just me being cranky about seasonal changes. Me being brittle about my life. Things have been busy, lately, and I’m feeling pressed and hectic, and I’m off my schedule, so that’s no fun.

I just have to remember that change is a constant, that I’ve dealt with this transition many times before in my life, and as challenging as it is now, I’ll adjust to it and move along.

Until the next big change, of course.

Just get me back to my routine

Herakles and the Hydra Water Jar (Etruscan, c. 525 BC) - Herakles clubs the Hydra, while a crab assists it by attacking Herakles
I feel like I’ve been battling a mythical beast that grows another three heads, every time I chop one off.

It’s been an eventful month.

And yes, I’m fully aware that I’m autistic 😉

Now, it’s time to get back to my routine, g*ddammit.

Seriously. It really, really is.

I had such great plans for April. I was going to “kick it” on my writing and reading, make some inroads in my posting, finalize my memoir, and lay a solid foundation for Auptima Press, my new venture with Toni Boucher (and a few other contributors). I was going to launch myself into a dedicated exploration of autism in my own life, peering into nooks and crannies where there’s still so much to be learned. I was going to regiment myself carefully, budget my time and energy, and really crank out some quality work, borne of careful consideration and all the motivation a member of a marginalized group can muster during a month dedicated to raising awareness about their “plight” (Oh, we poor dears… 😉

But then… life.

Illness. Industrial-strength. Live-and-death-grade medical condition. End-of-life conversations. Advance directives and living wills and powers of attorney, oh my.

And then… death.

The loss of my obviously autistic aunt — the woman who never, ever would have been missed or mis-diagnosed, had they known then, what they know now. Even in our still-developing state of under-awareness, she never would have slipped through the cracks. Not like she did, when she was a little girl. Nope. Not a chance. Her passing hit me hard. Much harder than I expected. I’m still not fully recovered, to be honest.

And now… life again.

Lots of it. Return to an over-full, busy schedule, a mad dash towards a series of shifting-target goals at work, as well as at home. I have obligations. More obligations than I’d like, but enough to let me know that I am — indeed — a valued part of the community. And that’s fine. That’s all very nice.

But I just need my routine again.

I’m peevish and irritable. I’m still recovering from poison ivy that’s not terribly itchy or painful, but gums up my routine, because I have to apply cream… and then the cream makes my hands feel weird, which I hate. I need to feel things with my hands — dry and firm and un-slippery. And that hasn’t been possible, what with all the lotions and potions I’ve been applying. Not to mention the weird ways that absorbing corticosteroids and Benadryl (even in a topical cream) have been screwing up my sensory processing.

Augh! I need a break.

Clearly.

But for me, a break isn’t just about checking out of the day-to-day. Far from it. For me, a break involves going back to my standard routine and being able to follow it to a “T”.

  • Get up when I’m no longer tired — around 6:00 a.m. or so.
  • Ride my exercise bike while I listen to electronica music and check in with Twitter, followed by some light weight lifting.
  • Fix my breakfast and eat it in peace, taking my vitamins 2/3 of the way through.
  • Sitting down to read and write and blog and check email and center myself for the day.
  • Get ready for work — and NOT have to decide what to wear, because I’m back to my usual weekly “uniform” of certain clothes on certain days.
  • Drive to work at a steady pace, after rush hour is over, and the traffic is more civilized.
  • Work my day through, getting in a 30-minute swim, around 3 p.m.
  • Head for home around 6:15, stopping to shop for supper on the way home.
  • Put supper on the stove to cook/stew, while I sit down to read/write some more.
  • Chat with my partner about her day.
  • Go to bed. Do some yoga poses, then lie there for a few minutes, till sleep comes.
  • And then do it all over again.

Is it so terrible, to want this exact same sequence to happen, day in and day out? I think not. Is it so much to ask, that I have this same routine, each and every workday? I can’t see why it should be.

I don’t want to stop the routine. I want to get back to it. That’s my “break”. That’s my relief. Knowing that my life is on track, and I’m making progress in meaningful ways. That’s what matters most to me.

And slowly but surely, it’s getting back to that… though none too soon.

It’ll come. It’ll come. I keep telling myself.

It’ll come.

 

True #AutismAwareness from past to present

I have no words for how wonderful this poem is. I keep playing it for myself. Thank you, Rhi!

How ironic — or rather, how fitting — that during “Autism Awareness Month”, I should have an up-close-and-personal encounter with Simone Weil, the iconoclastic philosopher of the World Wars Era who found a strong footing in mysticism. I’ve quoted her before, I’ve admired her from afar, and I’ve wondered about her. But until I made the autism connection, I didn’t quite “get” her.

Now I have. Now I do.

Simone has got to be one of the most (if not the most) autistic thinker / philosopher I’ve ever heard about, let alone read. I mean, seriously folks, this woman was an Autist Extraordinaire. Of course, her over-the-top exuberance of Self was augmented by her Frenchness — and certainly no offense to the French. Quite the contrary. That 100% passionate expression of Self is one of the things I’ve learned to love about my Gallic cousins. And in fact, my ancestors were French, as well, so there’s something of that in me, as well.

Last night I read a paper by an (apparently neurotypical) academic who explored a bit of Simone’s “autism” — dealing mainly with her perseverative focus and nonlinear thinking. She also explored Emily Dickinson’s neurodivergence a bit, but to be honest, I just skimmed through that section. I was most interested in Simone; Emily was out of the range of my own narrowed focus.

I finished the paper feeling decidedly un-sated, if not a bit indignant. First of all, Nothing About Us Without Us – that is, don’t be writing stuff about autistic folks, unless you actually talk to us to do a reality check. Second of all, considering Simone’s broad and deep expressions of hallmark female phenotype autism, the author picked out the two most obvious (and most easy) parts of Simone’s presentation, and didn’t seem to think it important to spend much time on any of the other many, many aspects of her autistic experience, let alone expression.

Further, the author seemed to think that Simone’s way of being was essentially performed for a utilitarian purpose — essentially “using” her autistic traits as a means to an end: reaching a different state of consciousness.

The whole paper made my head and heart ache, to be honest (so I’m not linking to it here — you can DM me on Twitter if you want to know the details.

But that visceral assault aside, this calls up a wide array of opportunities to Speak Truth to Power — to confront the ignorance and presumption of formal academics who appear to think they’ve got the right to pass judgment on their social science subjects: autistic individuals. What’s more, it really highlights the need and the necessity to enlighten some folks about what this autism business is all about for folks who aren’t 8-year-old white boys rocking and lining up their collection of cars, or 20-year-old fanboys who sit in front of their gaming consoles and PCs all the live-long day, making snarky comments about women and using Asperger’s as an excuse.

I have to wonder — in this day and age, when communication is so quick and relatively easy (easier than it was back in the day, when you had to hand-write a letter and hope that the postal carrier would get through hostile territory to your intended audience), when science is being thrown wide open, and more and more is being written and discussed about “atypical autism” — especially among women — how is it even possible that these misconceptions persist?

Okay, okay, the paper dates back to 2013, and work on the female phenotype is still relatively recent. Appallingly recent. And awareness about the female / atypical autistic experience is only now approaching what I consider a critical mass (tho’ I could be wrong, being in my little rarified world, here). But still. The rank ignorance and presumption that oozes from the paper… ugh.

But let me be positive about this. Let’s look on the bright side. Light shines brightest in darkness, and there’s a ton of darkness about autism in the world. So, the lights we shine might actually be noticed. One can hope. The fact that someone even wrote a paper about Simone Weil’s autism… that’s encouraging. Even if it’s partial, it’s a start. And it’s an annoying enough start to motivate me to do something about it.

So, that’s good.

It’s really good, in fact. ‘Cause I’ve been wanting to write up some extended blog posts — perhaps even publish a book — about the interior view of Simone Wei’sl autism, and I’d been thinking, “Well, there’s not a huge need for that…” Then I read this paper. And now I’m pretty well convinced that, yeah, there’s a need.

And this ties in with the rest of my work, as well, incidentally. It ties in with my memoir Into the Deep, which I’m finishing up and will be publishing this summer. It ties tightly in with my narrative there, because (for God’s sake), people need to get it through their heads that autism is not some social construct, it’s not some utilitarian means of subverting the dominant neurotype, it’s not an affect we choose, but rather, it is part and parcel of who we are and shades every aspect of our being (watch Rhi’s poem above again, please — it does a soul good).

Being autistic isn’t some invention. Nor is it an unfortunate result of a drug reaction. It’s a fundamental aspect of who we are — for me, at least, The One Most Critical Defining Aspect of Who I Am and How I Am, which is just as inseparable from my nature, as it was from Simone Weil’s.

And in exploring these aspects, in teasing out the subtleties and learning to recognize them — both in the living and the long-gone — we can learn a bit more about the human condition, get to know the proverbial canaries in the coal mine who have a differently intimate perspective on what the world is about, and expand our appreciation of just what it means to be human, what it means to be alive.

I’m still trying to figure out how best to go about this project. I’ll meander through it, I suppose, in fits and starts. I always do. I’ll follow  a thread and then double back to see what else is there. And I’ll dig a whole lot deeper than most might think is necessary (or even appropriate). It’s not just about coming up with an easy explanation of why some long-gone genius was as quirky as they were. It’s about reclaiming the autistic experience as a thread that’s woven through our history, and tying it to our present experience in an uninterrupted theme. It’s about better understanding the atypical / female autism phenotype through the words of someone who left a legacy of thousands upon thousands of pages of observation and insight, being brazenly who and what she was, regardless of what anyone thought.

Every once in a while, we happen upon a treasure that’s been locked up too long. Simone Weil’s autistic experience and presentation is one of them. People haven’t had the proper key to open that treasure chest, but now — guess what? — we do. And I’m about to turn her academic crypt into an autistic greenhouse.

Expatriating myself. Again.

I’m now sailing for distant shores

Almost three months ago, I wrote this:

February 7, 2017

Last week was surprisingly difficult. My parents are having some health problems, and I’ve been working overtime in my head…

My intention was to fill in the blanks and discuss how all the demands and pressures of my daily life have been exponentially increased, thanks to the added pressure of my parents’ medical issues. But really, that was just the beginning.

Things have become even more demanding, since I first drafted those lines. My parents have been finding their way through the proverbial brambly thicket of Big City healthcare (they’re going to a leading hospital in a major metropolitan area nearly 2 hours from their rural home, instead of the less sophisticated – and less capable – options around them).  They have help from a friend who’s a medical doctor, who speaks the medicalese of the world they’re traversing. He drives them to and from appointments, talks with the doctors, and also examines the lab reports to interpret them in lay terms. That’s a huge advantage, because neither of my parents are comfortable interacting with doctors — especially when it’s a life-and-death situation. They trust this friend. And in true Aspie/Autist fashion, they are looking to him as an Authority in these medical matters.

I’ve done some travel to my parents’ place, making the 9-hour drive with my partner in March, and helping her manage her pain and mobility issues. I got their paperwork squared away and got complete copies of the legal docs to my siblings and myself, and I also helped my partner recover from the trip, which really set her back, physically.

Things had settled down with regard to my parents, but then my aunt MG died — the one obviously autistic member of our family who was very much a part of all our lives. She was fairly impaired, socially and communications-wise. That’s not ableist. That’s a fact. She had trouble understanding what was going on socially, and she had an almost debilitating stutter and speech pattern that made it so difficult for her to say what was all going on in her mind. She was smart. But it was well nigh impossible for her to show it.

Her death was a real blow to me, for some reason. It was hard for us all, but I think the autism part is what got to me the most. Just that sense that, had she / we only known about autism earlier, we all could have taken steps to help her live her life the way she wanted to  — and to show the world just how smart and dedicated she was.

At her funeral service, however, I discovered that she’d actually had many friends who really valued her for who she was and what she offered. The people who showed up for the viewing, spending time talking to the family standing in a line beside her open casket, all spoke so highly of her and were truly hurt by the loss of her presence in their lives. They knew her as loving, dedicated, principled, a hard worker, and a real asset to their lives and the wider community. There were about 75 guests who showed up.

We’d been expecting less than 20.

So, that was a positive development. Of course, being in close quarters with my family for 3 days in a row, and being off my schedule for over a week (because I’d been on vacation, the week before) took a lot out of me. This past Wednesday was a day for rehashing all the old hurts and kinds of slights that my parents and sister (probably unwittingly) practiced towards me. I was always the difficult one. The combative one. The one who spoke her mind, which was fine, but did it in a way that didn’t soften the blow of my observations. I’ve never seen the point in sugar-coating my conversational points. It takes so much away from the words and the meaning. But my family got too caught up in their old perceptions of me as an unfeeling, brusque oaf, that it was hard to interact with them at all on Wednesday.

Then again, we were all tired. We were all off our regular routines. And that’s never a good thing, when you’re a bunch of Aspies / Autists trying your best to peacefully co-exist in the space.

Thursday was a relief. We all felt better, knowing we were getting back to our routines was reassuring, and we were all able to deal with each other as civil human beings who were already missing each others’ company. In the morning, we had a brief chat about one of my nephews, who has been struggling in school for years, dropped out a couple of times, and has been trying to finish up, so he can get on with his life. He’s a “textbook case” of Aspergers, practically plucked from a Tony Attwood book, but his parents haven’t been able to pin down just what his problem is. Sitting across from my sister, as she talked about how he couldn’t get things done on time, how he isolated, how he would rock in his chair at family gatherings… how he spent time alone in a darkened room, how he wasn’t outgoing in public, how unaware of his behavior he was, etc. etc., it took me completely by surprise when she said, “If only we could understand what’s going on with him! It just doesn’t make any sense!”

I replied, “Well, there’s always Aspergers.”

She paused for a split second, then pretended she hadn’t heard me. She continued to fret about his issues, and I spoke up again.

“Have you read anything about Asperger Syndrome?”

She shook her head “No,” and I was… off to the races… brain-dumping a bunch of observations about my nephew, along with references to how sensory overload is a huge piece of things, and if he could only see that’s what was going on, he could manage his issues and also find others like him. He’s so definitely NOT alone in this world — except, he is. Because he doesn’t have a thorough understanding of his condition / issues / traits, he can’t address them at the root level. I blurted all this out in a rush that left me physically shaken. My hands were trembling, when I looked down at them, and my voice quavered.

But at least I said something.

The timing wasn’t great, however, because then it was time for me to leave for home, without getting to discuss this topic in greater detail. Still, it was a huge relief for me to get on the road and just leave. Being around my parents is pretty demanding, because they are so set in their ways, and they are also pretty merciless, when it comes to critiquing others — which they do with great gusto and self-confidence. I try to blend with them, when I’m in their midst. There’s no sense in sticking out from the crowd, because like the nail in one of my steps at home, whenever you stand out from your surroundings, you get hammered back into the hole you’re supposed to occupy. It’s not malice that drives them to it — it’s anxiety. That visceral, anguished surge of panicked pain at the sign of anything that’s out of order.

My life is completely out of order, in their view, whenever I show it to them in all its rogue glory. And I have better uses for my time, than fending off the hammer. So, I keep myself “in line” while I’m in their house.

It is their house, after all.

So, what does all this have to do with expatriating myself? Quite a lot, actually. Driving home, I listened to an audiobook biography of Simone Weil, and I was struck with how much her life really paralleled mine. Not socio-economically, because I wasn’t raised in an upper middle class Jewish household in France, and I never did manage to get my degree, let alone receive accolades from my intellectual peers and/or stand out as a champion of the working class. But there’s something deeper and more pervasive about her that struck a nerve with me — and continues to, days later.

Regardless of our cultural and temporal differences… regardless of my lack of formally recognized education that pales in comparison to hers… at a personal level, there’s a whole lot I feel in common with her. The mysticism. The pain. The suffering. The connections to the workers, the manual laborers. The drive, the need, the anguish, the shrinking from human touch, and the transcendence of rapt attention that cannot be broken by anything. By anything at all.

And it’s at that experiential level I consider her an older sister, an instructing peer, a member of my autistic tribe, who I only wish had realized the reasons for her anguish. She was not disgusting. She was not a reject. She was not deserving of punishment. She was autistic. A different neurotype. A different phenotype of human. Had she realized that, while still alive, I wonder what a difference that understanding would have made for her.

So, I’ve emailed my sister information on Neurotribes — a nice thick book that’s just the kind she loves to devour. That should keep her busy. And it should jog her imagination a little bit — depathologize autism… get her thinking about how her son presents, how his difficulties have played out, and possibly see that he actually does have a community waiting for him, if he wants to join us. It would be completely awesome, if he could put things together for himself, and have that singular sense of having everything “fall into place” after years and years of pain and struggle and suffering.

It’s a different world we autists inhabit. That much I know. We have our own culture, as Sonia Boué has said a number of times. We have our own sensibilities. We have our own priorities and best practices. And that world, that way of being, is always there for us, anytime we wish to enter into it. We can enter with others. Or we can enter alone (autism being, essentially, alone-ism). We’re not necessarily lonely. Unless we’re surrounded by those who do not understand us, who make no effort to learn about us, who diminish us by insisting we “can’t be autistic”, and who take great comfort in not being able to recognize us as residing squarely on the autism spectrum.

It is to that autistic world, I increasingly expatriate myself. I remove myself from non-autistic (and autistic-but-won’t-embrace-it) company, when I can. Yes, I reside and work in a neurotypical world. I participate in mainstream activities, fulfill my professional duties in a neurotypical (well, sort of) workplace. And I read mostly neurotypical writers and researchers, because that’s mostly what’s available.

But that’s changing. Because it can.

I’ve got Laura James’ book Odd Girl Out lying on the table beside me. It’s heavily marked up — nearly every page of it — with yellow highlighter calling out lines that resonate with me. A whole lot resonates with me. Or it strikes a completely opposite — but still very spectrum-y — note, which calls out our similarities even in light of our dissimilarities. It’s a spectrum, this autism business, after all. So, there will be variations our shared theme. And those differences (with my recognition of them), make our unique spectrum all the more accessible to me.

And I have my Simone Weil books on the way. I  ordered a stack of them on abebooks.com, without wrecking my bank account, which is in itself priceless. I’ve got my printouts of papers on specific aspects of her experience and writing. I’ve written some posts about her, as well. Discovering her is about more than finding a contemporary female philosopher/mystic’s voice. It’s an experiential portal opening up to a commonality between her and me, which extends out across the whole of terra autistica… climbing into the hollow trunk of a tree with a vast network of roots that connect us autistics in countless ways that the mainstream, allistic world cannot detect.

We’re under the surface. Under their radar. Well-hidden, expertly concealed. But we’re here. And we have a world all our own.

It’s to that world I now take myself increasingly. Yes, I pass as neurotypical. It spares me the wasted energy on trying to get others to recognize and understand me. Yes, I camouflage. Yes, I blend. In my own subversive way that undermines the primacy of the allistic model, by the very act of living my life as I am, how I am, how I wish — and even more importantly, how I am compelled, by forces beyond my control and ken.

That world has always been there. I’ve always inhabited it, to some degree. Only now, nearly 52 years into this earthbound experiment, I’m doing so with full awareness and a conscious choice.

Because – as Simone said – I can.

Therefore, I am.

#SheCantBeAutistic – Because women are supposed to be neurotypical culture-carriers?

pictures of diverse women - fuzzy pictures
Autistic women are rarely – if ever – seen. And then we’re suspect.

Something occurred to me this morning, while I was working out. Something about women and culture and autism diagnosis. And the intense isolation / loneliness that so often accompanies autism throughout our lives.

Maybe I’ve thought of this before, and I’ve just lost sight of it. If I’ve blogged about this before, I apologize for repeating myself. Anyway, I was pondering why there seems to be so much resistance to women being diagnosed as autistic — both in the healthcare community industry, as well as in our social milieu. The standard tests don’t include us. Doctors and therapists have a thousand reasons to tell us we’re not autistic. And even if we do get an official diagnosis, it can be pretty dicey with our friends and family and everyone else either telling “You’re not autistic!” or just plain ignoring us whenever we try to discuss it.

It’s just a little infuriating. Off-putting. Dismissive. And also detrimental to our health.

So, why? Why is it like this? I need to understand for myself, and maybe it can help someone else, too. Dunno.

I’m traveling down to see my family tomorrow. My Aunt MG’s funeral is Tuesday, and I’ll be traveling deep into proto-Aspie territory there. It’s a tough environment, to be honest, because it’s very rigid, very black-and-white-thinking, very challenging in every sensory way. The hyposensitive autistic folks tend to dominate every aspect of life – and you know how persistent we can get, when we need something like our lives depend on it. That part of the world is very proscribed and circumscribed by a dizzying array of rules and unspoken expectations. For those who think “Planet Autistica” would be a wonderful place to be, lemme tell ya — it’s not. I grew up there, and it was tough. Very, very tough.

When I was a kid, my grandfather came to Sunday dinner. This was while he was still windowed, before he married his last wife (he outlived two wives before he married a woman much younger than himself — which, since he was such an Aspie, really worked for him). He was holding forth with one of his uber-autistic monologues about how women are different from men. “Women have to be better,” he said. “Because they carry the culture from one generation to the next. They have to make sure we stay civilized, and hold the men to higher standards. Men — ” he shook his head regretfully, “are not as good as women.”

I didn’t quite know what to make of that, quite frankly. I mean, there he sat, announcing that he and all his gender were basically exempt from holding themselves to higher standards. And women were supposed to step up and keep them in line. Like we had nothing better to do with ourselves. I believe I was 15 or 16 at the time, and although I was inclined to respect his opinion, it still didn’t seem fair. Or honest. But that was his belief, and out of respect I said nothing.

A good 35 years later, I still think back on that conversation. And I wonder if maybe that underlying bias isn’t one of the culprits behind women not being diagnosed — that there’s this expectation that we’re going to somehow turn out “better” than men/boys, that we’re going to be tasked with perpetuating the culture we live in (neurotypical culture, that is). And so it’s incumbent that we be normalized as much as possible in the course of our childhood, youth, and adulthood.

I know, for me, the pressure to conform has always been intense. And it’s always come from other girls, other women around me, who have always seemed to take it upon themselves to “police” me. My tone, my behavior, my clothing, interests, my… everything. I would imagine the same holds true of boys, to some extent. But growing up around girls, under that constant pressure… it shapes you in specific ways, which you never quite escape. It’s burned into your experience, embedded in your mind.

And if you’re not “normal”, it’s a problem. If you’re not neurotypical, people freak out — I should know, they did it a lot with me. If you don’t fit in, you’re a liability, and you’re made to feel that way. As a girl, I made peace with that, because frankly it was way too much work to try to fit in, and every time I tried, I … failed.

So, I went for the “quirky” effect and I carved out my own niche being myself… and making room for everyone else who wanted to just be themself around me. It really did wonders for my ability to peacefully co-exist around others, because all the other girls (and boys) and – later – women and men who were overtaxed and exhausted from trying to keep up with everyone else… well, they always had a place with me, where they could just be themselves. And it was magical for them, as well as me.

In adulthood, things have actually been more challenging — especially now that I’m active in mainstream life, with a “career path” (LOL), a mortgage, an SUV and a minivan in the garage, a long-term marriage, local government responsibilities, and so forth. I blend much better now, in part because I don’t really try, in part because people just assume that I’m just like they are.

Just like they are… that’s a good thing to them, because it means that I’m adhering to their values, I’m supporting their choices, I’m continuing their culture. I’m a woman, and I’m playing along… As far as they can tell, anyway. I can hold a conversation (though it’s hit-or-miss, in terms of whether I know what it’s about or remember what we discussed, just a few minutes after). I can hold down a job (though my weekends are spent in major Recovery Mode, which leaves almost no time for anything else). I integrate really well with my surroundings, and I don’t stand out as a “weirdo” (thanks to, oh, 45+ years of practice — yeah, you learn a thing or two, over that amount of time). I’m a fine example for young(er) women around me, to show them what’s possible in life. I’m a walking, talking exemplar of “normalcy”, as far as anyone who’s not autistic can tell.

Those are the facts.

But the truth is something very, very different. I go along with everything, because I don’t feel like dealing with the fallout. I’m not sure I’d last, if I didn’t have these bogus structures in place. There are countless benefits to “passing”, and I’m frankly not self-sufficient enough to make a go of it without those benefits. Call me a coward. Call me a fake. In fact, I’m actually quite impaired, outside the “institution” of my artificially constructed everyday life. I have no confidence that I can put food on the table and keep a roof over my head, and once a year spend a few days by the ocean, without my voluntary institutionalization. And anybody who begrudges me my “passing” has no idea how hard it is for me to function just on my own, outside those parameters.

As long as I’m toeing the proverbial line of social acceptability, upholding the values of the dominant culture around me — woo hoo! I’m set. But the minute I start pushing the limits and stepping outside the bounds that are set for me — as a woman, as a culture-bearer — I find out about it. Those awkward silences. Those criticisms. Those comments. Those sidelong looks. Autistic people can in fact be excruciatingly sensitive to our environments, and I get a full “dose” of corrective reactions from other women, when I stray outside the bounds of their expectations.

We have a job to do — and that’s to continue the culture we live in. Women bear the children. Women do the majority of child-rearing and caretaking in the world. The world sorta kinda hinges on our willingness to play along, in order to perpetuate the culture — whatever culture we’re in.

So, if you turn up autistic, which in itself is poorly understood by … pretty much everybody who hasn’t made a concerted effort to study and understand it … that’s a violation of your contract as a woman in the world. Turning up at the doctor’s (or therapist’s) office, announcing you think you may be autistic is a violation of social / cultural trust. Because:

A) You’re in touch with your own individual experience enough to know there’s something different about you (which should have been trained out of you, years ago),

B) You’ve spoken up to call attention to the fact (which everyone knows is a no-no for women, who are expected to sit quietly while other people – men – make all the noise and draw attention to themselves),

C) You’re saying you know as much as — if not more than — the healthcare provider sitting across from you (which is the ultimate affront to socially/culturally approved authority structures) , and

D) You’re expressly saying that your own interests are every bit as significant (even moreso) as the dominant culture’s (which flies in the face of everything you’ve been taught as a self-effacing woman).

When you show up as a woman, saying “I’m autistic”, you’re stepping out of the role you’ve been trained for — a role which the world depends on you to uphold. You’re saying out loud that you’re not … adhering… and that people need to make some adjustments to make room for you in their lives. A lot of people can’t. A lot of people won’t. On a deep (and usually well-hidden) level, it strikes at the very heart of what they believe a woman should be / do, and how they should relate to you.

So, yeah – color me radical. Autistic women pose a significant “threat” to the status quo on so many levels, not least of which because we’re the ones who are expected to carry on the norms of our host society.

Some of us can’t. Some of us have no interest in doing so. And some of us may seem to on the surface, whilst behind the scenes — and beneath the surface, where no one ever bothers to look — it ain’t necessarily so.

On that note, I leave you to go off to my non-compliant, self-serving day, where I can remember — once again — who I truly am… versus what the rest of the world thinks I should be.