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.

 

All the community I can ask for

faces behind cobweb

Well, yesterday was interesting. My partner needed some help getting home from her event, yesterday. Her colleague, (who originally planned to travel back with her so they could hang out for a day or so after that), connected with another participant who had a business opportunity to discuss. So, business took precedent over pleasure. And that was fine, since my partner was totally wiped out by the event.

It was a good one, but it took a lot out of her.

And I can so relate.

So, I drove the 90 minutes to help my partner get safely home. It was actually pretty good for me, because I got to see a lot of people I hadn’t seen in some time. I used to be involved in my partner’s business (before I started to overload and melt down, and I realized I needed to back off and take good care of myself). I miss the folks I got to see, yesterday. I’ve missed hanging out with them.

At the same time, I notice more and more, every day, just how one-sided my interactions with people tend to be. They don’t seem to expend much energy at all, when they interact. In fact, they seem relaxed and at ease. I, on the other hand, am all twisted up inside. And the repeat hugs, the constant reaching out to make contact… Oh my God… it got to be a little much, after a while.

On top of it, there were so many people there, milling around — something like 30 people, some I knew, some I didn’t, some I knew but didn’t recognize, some I didn’t know but thought I recognized. How confusing! It was like stepping into a hall of funhouse mirrors… very “trippy”… very “swirly” and totally overwhelming… I become partly blind, when I’m in those situations. I literally can’t see what’s not right in front of me, as everything spins around me, making me a little sick to my stomach. I have the vague sense that everyone and everything else is there, but I can’t  distinguish anything specific in the wild flow of energies and colors and movement… like one big blur, and there I am in the middle of it, just focusing on staying calm in my center. (Thank you Stoics, for giving me a solid frame of reference to help ground me.)

So, I’m spinning and spinning and just barely able to focus on one “Hi! How are you?! Oh, my gosh! I haven’t seen you in so long!!!” at a time, and here I am, just trying to get my partner packed up and brought home in one piece… Augh! (but in a fun-chaotic kind of way). To keep myself grounded, I focused on one person at a time, one conversation at a time. Just ignore the nausea. It’ll pass. I also focused on helping my partner gather all her belongings (she took a lot with her), and get them in the car without forgetting something important. I had some help from some of the other attendees, but again, sometimes it’s more difficult for me to communicate with others and tell them what should be done. I’m highly visual-spatial, so when it comes to getting stuff done (especially packing), I think in pictures and feelings and flow, rather than words. Being pressed for words just makes things harder.

But no biggie. I figured was only going to be there for a short time. Maybe an hour, tops. But there were so many people, and there was so much going on… and 1 hour dragged into 3 hours… and before I knew it, we were being invited out for dinner with a bunch of folks afterwards.

Cue the panic. Smiles. Laughter. Nodding. “Sounds great!” I heard myself saying. “We’d love to!” And the whole time, behind the scenes, I’m starting to lose my sh*t. Freaking out — ever so demurely, of course… wondering how the hell I was going to get out of that. I mean, I really liked each one of the people we were going to go out with, but all together… in a noisy restaurant… Someone explain to me the attraction. To this day, I don’t get it.

Anyway, long story short, my partner saved me… because she was exhausted, and she didn’t even realize it till we were headed down the road to join the others. We had to pull over twice, so she could rest and get her bearings. She was so apologetic and felt terrible about “making” us miss the get-together. But in all honesty, it was an enormous relief for me.

The ride home took 3x as long as expected, between both of us being tired, the bad weather with poor visibility, as well as stops along the way. Plus, we both got turned around and ended up on an unintentional detour that involved a close encounter with a federal prison guard. Don’t ask. It was all very exciting.

But at least we made it home in time.

Plus, I got to look like I was being ultra-social… and still got off the proverbial hook, anyway. I survived. And that’s the important thing, right?

Done with that autism spectrum “disorder” business

outlines of people in different colors

I woke up a bit irritated, today. I’m happy for the weekend, but the weather is dreary, and my shoulder hurts. There’s a whole lot of stuff I want to do, while I have the free time. But I didn’t sleep quite as much as I’d wanted to, which is problematic. Oh, well — I’ll get a nap later. It’ll cut into my plans, but so it goes.

I was also irritated about the whole designation of “disorder” that goes with autism. I got my proverbial mental wheels spinning last night, thinking about Roy Grinker’s assertion that autism is a social construct. Gah! When I think about it, it just seems like yet another straight, white, neurotypical man getting pissy about being left out, and wanting to say that a group he can’t belong to doesn’t exist, rather than accepting that he’s not part of it, and will never be, so he can’t have access to all the energy and attention he’s come to expect from the world. I hate feeling uncharitable, but honestly, the whole idea that academia can “invent” something as fundamental as the autistic neurotype… it’s both laughable and supremely irritating in ways I can only articulate in writing.

And about this whole “disorder” business… Actually, I do agree with Dr. Grinker in the sense that neurotypical society has concocted a disordered perception of autism. I believe it has more to do with society’s narrowing range of choices in terms of work, activities, etc., effectively stigmatizing, penalizing, or getting rid of the things that used to really help us live our lives as productive members of society.

Once upon a time, you could do hard physical labor all day and be a respected member of society. Farming, factory work, and other manual labor activities which help us manage our sensory issues and channel our prodigious energy, were all respected — and compensated. Now, you’re lucky if you can break even, doing many of those kinds of work. Once upon a time, you had to get up and walk… you didn’t just get in a car and drive somewhere. Once upon a time, kids played independently outside, ranging far and wide… now they sit in front of video game consoles and screens, or they’re herded into organized sports (which all seem like farm teams for pro teams, if you ask me). Once upon a time, everybody was on a schedule, and you could reliably count on things happening at pre-appointed times. Stores and other businesses were open at certain hours. Whether you were in the country or the city, you got up along with everyone else and went about your business in a predictable manner. You worked for the same company your entire life. There were structures and standards everyone lived by, and that was that. It wasn’t perfect (in fact, it caused massive amounts of suffering — and death — for people who didn’t fit the mold), but it was pretty predictable.

Now, things are different. And lo and behold, autism is popping up everywhere. Surprise, surprise. Autism and more… Disorders to the left of me, disorders to the right, thanks to the DSM. And to make matters worse, the world around us is truly, literally disordered — lack of predictable patterns, lack of standard structures. But is the problem with society and the way things are set up? Oh no! It’s autistic people! It’s mentally ill people! It’s diagnosed people! We’re to blame for making things so… uncomfortable for the “normals” in the room.

Yeah, I’m in a mood. Why not? It’s a crappy, rainy day (I know, I know, we need the rain), so why not match the weather with my frame of mind? I’ll get over it, eventually, just as the rain will pass.

Okay, back to it. Disorder. Dread Dis-Order.

Yes, I understand that autistic folks can have a whole lot of challenges (I definitely do). It can be really debilitating. And it is for me, at times as well. Yes, I get it that there’s a whole lot of suffering that happens with autists and Aspies. I get it that society has a long way to go before it’s fully inclusive (or even has a clue about us).

Nobody likes to be in constant pain from bright lights and loud noises and constant physical contact from a world that can’t seem to function without those features. Nobody likes feeling out of synch with, well, everything, and ending up each day in a depleted state. Nobody likes to walk on eggshells and constantly play catch-up.

Here’s the thing, though…

Disorder is so often in the eye of the beholder. And a lot of times, the root of problems isn’t about how you are, but rather how people perceive you… Whether or not they accept you… How they cope with your anomalous behavior / traits.

What makes it most awful for me is not so much the pain and discomfort of the condition. Hell, life is painful and uncomfortable for me, Autism or no. But the sheer volume of judgment around it adds insult to injury, and the psychic toll is far greater than any physical difficulties I experience. Yep, it’s no picnic to be in constant pain. It’s no fun to have to constantly re-jigger my plans and not be able to plan for anything, because I may have nothing left over for “extra-curricular” activities beyond my day-to-day responsibilities. It’s not much fun to have no energy left for those rare social occasions when I actually want to do something, but can’t, ’cause… well, I can’t. And living in a state of arrested development, because I haven’t had the same levels of access to information and interaction that just come naturally to the neurotypical majority, isn’t my favorite thing.

But I can deal with all that. I can manage my pain. I can manage my symptoms. I can wade through the confusion, the frustrations, the anomalies. It’s just when people around me start behaving badly, that things work my last nerve.

The narrow-minded lack of respect.

The ridicule — particularly the kind of light-hearted (but incessant, relentless) criticism of autistic / Aspergers traits that borders on really bad taste, even outright persecution of Big Bang Theory.

The lack of imagination — good gawd! the sheer lack of imagination and inability to accommodate any differences at all!

The lack of freedom, the constraints and requirements… the looks you get from people. Sheesh.

The most draining thing of all for me is just the sheer volume of social static I get from people over things as fundamental and uncontrollable to me as my sensory issues, chronic pain, and the overload I have to navigate every livelong day.

So, all that being said, here’s my basic attitude, which has been in effect for years and years, and will continue to — even moreso, now that I’ve got my autism diagnosis all sorted, April is over, and the year is ramping up:

I just don’t care what others think about me. I don’t have the time, can’t spare the energy, can’t be bothered with their static.

I’m not going to wait for them to realize I need to be accommodated. I’m telling them what I need, and I’m going to either get it, or ditch them.

I’m not going to dignify their ignorance and stupidity with any attention. If people are with me, they’re with me. That’s great. Or maybe it’s not so great. If they’re not with me, I’m not wasting my time on accommodating them. I have no time left for assholes.

Now, sure, you can think, “Well, that’s fine for her, but I’m in a different situation. I’m more dependent than she. I’m less able / connected than she. I can’t just turn my back on the world and expect to survive. She lives in America. I live in ____. That means the rules are different for me.”

And you can think anything you like. That’s your prerogative. As for myself, this all comes from a combination of things I’ve done over the 50+ years I’ve been around, carrying on in my own unique way, regardless of what others thought of me. It also comes from the wonders of menopause, which has drained the estrogen and progesterone from my body and has effectively rendered me hormonally independent.

Estrogen and progesterone are notorious “tend and befriend” seekers, and they complicated my life tremendously, biologically compelling me to seek out the company of people who really couldn’t deal with me very well. I think the same may be true of many other autistic folks (especially women) who are biochemically inclined to be more socially connected. In fact, if you want to truly and honestly examine the differences between the male and female autistic phenotypes, look at the biochemistry — and that goes for all the non-binary / trans folks, as well. Just ’cause you come into the world with a certain body that’s recognized as “male” or “female” by society at large, doesn’t mean your chemistry is going to mirror that.

I’m over-simplifying to some extent, of course. How we’re wired, and the biochemistry we “marinate” in, each moment of our lives, is far more complex than that. But it’s worth considering, even cursorily.

So, where was I? Oh, yes — I’m pretty much over the whole accommodations thing. I’m done waiting for others to figure out how to help me. And I’m done asking for their consideration. I’ve got to take responsibility for my own well-being and my own needs, and if that means I: A) engage less, or B) engage more in some unforeseen ways, then so be it.

What other people think of me is none of my business. So, I just have to go through life as I see fit. If others don’t understand or don’t appreciate my point of view, fine. Why should that affect me? What do I care, what other people think, anyway? If they’re right and/or they agree with me, that’s fine. If they’re sympathetic to me, wonderful. Then again, it might not be so wonderful, because people who think they’re sympathetic or (heaven help us, “empathic”), or who go out of their way to be that way, can get it all wrong and have no clue just how terribly wrong they are.

What is my business, is how I react to them. If someone is not intending to be an asshole (and they are trying to be just the opposite), but is coming across that way to me, I need to check myself and not meet their supposed assholery with my own deliberate assholery. People are clueless, when it comes to things outside their personal experience. So how am I supposed to expect someone who’s not autistic, not queer, not a woman, and not privy to my own highly unique range of experiences, to have a fucking clue how to deal with me?

They can’t. They can’t, and they won’t. But that doesn’t mean I need to be mean-spirited to them — even if it feels like I’m defending myself and my honor. If someone doesn’t mean to be a jerk to me, but their “sin” is one of omission and/or ignorance, I can’t get all up in arms about what a terrible person they are. Because they’re NOT a terrible person. They’re an ignorant/uninformed/clumsy person trying to do the right thing. Even if their choice of words is awful. Even if their choice of imagery is wretched. They’re still often trying to do the right thing.

Lots and lots of people (neurotypical or otherwise) tend to lack skill in many areas where I have expertise. I’m special that way 😉 and I need to get a grip and not get my hopes up about how well they’ll perform around me. Chances are, they’re going to be really clumsy — just like I get clumsy when I haven’t slept, I’m distracted, and my sensory issues are pinging off the register. But I need to exercise some generosity of effing spirit and give them the chance to be the best person they can be at that instance.

I firmly believe that people genuinely seek to be successful — especially socially — and when they screw up with me, it’s often because they’re out of their depth. They’re trying to move up to a new level, and their initial attempts are blundering at best. Yes, sometimes they can be mean-spirited assholes. But what does that have to do with me? Nothing. I just don’t have to meet them halfway — or meet them anywhere.

Regardless of what folks are doing outside of myself, I have to tend to what my interior experience is like. I’m responsible for my own interpretations of things. And I’m responsible for coming up with my own solutions. Ironically, I learned the most about how to advocate for myself from my late mother-in-law, who was very ill from a very young age. She knew how to make sure she got what she wanted and needed, and I learned all about how to interact with able-bodied people as a disabled person, from watching her tear through life like hell on wheels. She didn’t settle for being treated as “less than” by anyone — man, woman, or child. She stood up for herself. She was fierce. And she was severely limited, physically. She was an invalid. But you know what? She Tore . It . Up. She never settled for less. If anything, she pushed everyone around her to do better, be better, and also make sure she got what she needed.

I swear to god, I need to write about her, sometime. She blew away all the presuppositions about what it means to live disabled in the world.  She was disabled, but she was more able than a lot of non-disabled folks. She moved the world from her place in it — like FDR in his wheelchair. She didn’t wait for anyone to offer things to her. She decided what she wanted, and she got it. Heaven help you if you stood in her way.

So, I’m done with internalizing the messages about “disorder”. I’m done with even worrying about my “disordered” state. Please. Don’t even start with me. Look around — who’s disordered here, exactly? Nobody like me would ever have created the circumstances around us, and autism-and-all, chronic-pain-and-all, underemployment-and-all, near-bankruptcy-and-all, I’ve been putting my proverbial shoulder against the wheel of social change and justice pretty much my entire life.

A lot of shit that tweaked me, months ago, I realize was not worth the investment of energy. Getting tweaked about others’ dramas is not worth the soul-sink. I’ve put filters up on Twitter to block out obnoxious wailing and gnashing of teeth about THE END OF THE WORLD AS WE KNOW IT, as well as the dire predictions of ALL THE PEOPLE WHO WILL DIE. Sheesh. First of all… No, never mind. I’m not going there.

There are so many other places to “go”, and I need to take leave of the old, worn-out thinking that by increasing my own suffering, I’ll somehow reduce someone else’s. You can think that if you like, but I differ.

If you agree with me, then great. Or not. Doesn’t matter.

At the end of it all, what matters most is that my life is my own, I’m responsible for my own thoughts and experience and expression. The rest of it… it’s being taken care of by others who own their piece of it. If they don’t do right by their part, that’s too bad. But it has nothing to do with me — not their conceptions of disorder, their ideas of what’s right and what’s wrong, their devotion to a constellation of meanings that’s literally in a different universe than my own.

So it goes. The weekend is here. It’s time for my Saturday morning walk.

Is #autism a purely cultural construct?

A few months back, I watched this video, and I found it very thought-provoking.

Essentially, what I hear Dr. Grinker saying, is that the concept of “autism” is a cultural creation, laden with all the criteria and aspects which the dominant culture deems important.

As someone with a cultural anthropology background, this idea intrigues me. I was a German-Anthropology double-major at uni, studying for 2 years in the US and 2 years in Germany at the University of Tuebingen (which — I discovered years after I left –has a pretty solid reputation in terms of anthropology). So, cultural context and the ways that the dominant mindset interplays with and fosters phenomena in people’s minds and lives is always in the back of my mind.

Heck, I’m an autistic woman, so of course I’m going to be intrigued by this stuff. If you want to get stereotypical, autistic boys are “little professors” and autistic girls are “little psychologists”. Of course, there’s bound to be overlap — you can cross that gender divide any ol’ way you like, and it’s perfectly fine by me.

Anyway, the more I think about this concept that “autism is a cultural construct”, the less I agree with it. I’ve long been convinced that we autistic folks have our own culture, our own ways of being, and the things we find compelling and meaningful are likely to appeal to us because we are autistic. We aren’t autistic due to the neurotypical identification of our “condition”, any more than species in the Galapagos Islands were invented by Darwin when he first documented their existence.

Let’s not get confused about this, people. Just because you identify and name something, doesn’t mean you have rights to it, or you own it, or you get to define it. All you’ve done is identified it, placed a label on it, and granted it (dubious and frankly unneeded) permission to occupy your thoughts in a systematic way.

Autism isn’t something that was invented by Asperger or Kanner, or even the other guy (Eugen Bleuler) who apparently coined the term “autistic” in … what?… 1911. No, Kanner wasn’t even the inventor of the term, nor was he the discoverer of autism. He was some dude who had a knack for recognizing the value in obscure but useful concepts, and turned that raw material into his own gold. ’nuff said ’bout that guy.

Autism wasn’t invented by anyone. Nor is it the domain of anyone who thinks they can (or should) cure it or fix it or do whatever with it. Autism has always been. It just hasn’t always been recognized. Just ’cause a bunch of people have been staring at their shoes for aeons, then suddenly they look up and notice the beautiful sunset, doesn’t mean they get to decide what the sunset means, what to do about it, or who has access to it.

Likewise, the idea of anyone declaring autism a cultural construct is telling. It’s telling that it comes from a straight, white, neurotypical male in academia. How presumptuous. And how clueless. He may have an autistic daughter, and he may have written some book(s) about the subject and studied autism in different contexts, but seriously… calling a distinct neurotype a veritable invention of the dominant milieu… yah. No.

I am especially convinced of this, as I did a couple of family visits with my autistic parents in a very autistic part of the United States, where they’re just starting to understand autism as something other than an extreme, mentally debilitating condition. My father is ill with a still-to-be-diagnosed condition, and both of my parents (being under duress) have become increasingly autistic along the way. But to them — and their friends — they are wholly and entirely normal. They behave “the way people are supposed to behave” and that’s that, as far as they’re concerned.

I spent a fair amount of time, on one of my visits, discussing an article about autism which my parents read and discussed with their (ultra spectrum-y) book group. In no conversation, other than one about my aunt, did the idea of anyone in our family being autistic come up. I haven’t discussed it with them. They hew to the classic, post-WWII understanding of autism. Frankly, they’ve got enough on their minds that needs processing.

Knowing what I know, seeing what I’ve seen, I firmly believe that autism is a specific neurotype. It is, in itself, not necessarily disabling. Now, what the dominant paradigm considers “autism” is actually the symptoms of the condition, exacerbated by a number of factors (genetic, environmental, social, cultural, interpersonal, etc). I also believe, having grown up in an area where autistic behavior and traits were/are the norm, rather than the pathologized exception, that even in the face of acceptance, the autistic neurotype still retains its distinguishing characteristics. It still lays the foundation for the classic issues that arise (and are pointed out in the DSM-V). However, in an environment where autism is the norm, there are specific cultural supports and accommodations which are naturally extended to individuals. Those supports are every bit as remedial as are found outside the community, but they’re not extended as part of a specialized response to a pathological disorder, rather just something you do for someone to help them out.

In the area where I grew up, in my extended family, as well as our immediate rural community, autism is simply another way of being. And there are specific supports and responses to its challenges, which are woven into the fabric of the subculture as part-and-parcel of that way of life. It’s not pathological, it’s not embarrassing. It’s just how people are with each other and the world around them.

But if you view it from a distance, the characteristics are every bit as autistic as any you’d find identified outside the normalizing context.

Based on my upbringing and the last 20 years of actively exploring the nature of autism in my own life, I believe that autism is actually very much “a thing” in itself. When it’s accepted as simply another way of being, autism retains its nature and characteristics (and challenges) — but the community incorporating it is transformed.

So, it’s not a question of a culture inventing autism. Rather it’s a culture learning to recognize a part of itself that it may have never noticed before… putting a name to it, trying to understand it, and figuring out how to incorporate it (or, sadly, in some cases, eradicate it). It’s a question of culture creating a disorder — which should never be confused with the autism, itself.

Is autism a cultural construct?

Nah. But autism does a great job of constructing culture.

No more forcing myself into community

four groups of four human figuresYears ago, my partner and I hung with a Wiccan crowd and we did a lot of social things with them. Something about the gatherings with the routine and ritual soothed me and gave me a great sense of connection.

Unfortunately (and this is by no means true of all Wiccan groups), I realized my social naivete had landed me in the middle of a bunch of really wounded people with a lot of ulterior motives, and rather than using their magick for the benefit of all, they were trying to use it to basically get their own way in the world. The leader of the group was a “stealth” alcoholic, and when we discussed her just the other week, my partner informed me that the leader was always trying to come onto me – especially when drunk. Apparently, she had the hots for my androgynous ass (back when my ass was a lot more firm and not sagging so close to the ground), and she made multiple attempts (in front of my partner) to seduce me.

This was news to me. I think? I honestly have very dim recollections of my interactions with that woman, and I never really picked up on that vibe… I think. Interestingly, that leader did actually seduce another member of the group — an autistic man who fit all the standard-issue criteria for the spectrum. He identified openly as an Aspie, and he had three kids who were all autistic. He apparently picked succumbed to her seductions, one thing led to another, and she ultimately had him wrapped around her little finger, doing her bidding and whatnot.

The group itself kind of imploded after that. I’m not sure what ever happened to that guy and his family — if his wife ever found out, or whatever. Not my business. Not my problem. Fortunately.

Anyway, I’ve been thinking a lot about community, lately. Where we find it. Where we create it. Where do we find comfort? Where do we find solace? Where is our tribe?

Online, we can find people we connect with, especially on social media or blogs. Offline, it’s always a challenge. This weekend is a great example, in my case. I am home by myself for a few days, while my partner and a colleague of hers attend a community event for the weekend. It’s an annual thing, and I’ve never had any interest in attending. In fact, my partner has asked me in the past to not attend, because she doesn’t want the added work of dealing with me, while she’s there.

That might sound harsh, but it’s totally true. I’m terrible at long events. I can’t “hang in there”, as everyone encourages me, till it’s over. Anything longer than a few hours is pushing it for me. I used to attend all-day community gatherings (Wiccan and otherwise), but they took such a toll on me, I went underground for weeks after.

Spending an extended period of time with my family does that, too. I can’t just flit in and out of their company like a feather on the wind. Nor can I spend more than a day with them without starting to feel a meltdown coming on. My last visit, when my aunt died, was my limit.

And when I’m surrounded by a bunch of strangers, it’s even worse. I start to shut down after a few hours. And if people are very tactile — touchy feely types who want constant contact and find that soothing — my “tolerance window” is even shorter. So, my partner has to rescue me from interactions that are overwhelming me, she has to make sure I’ve got access to a safe space, she has to answer a lot of questions from folks about why I’m acting the way I am — what’s wrong with me? — and what people can do to help.

It’s just too much.

For me. And for her.

And it’s not fair to anyone.

Over the years, I’ve done less and less of the types of community activities that used to be run-of-the-mill for us. I’ve gotten less tolerant of the stress and demands, over time. And I’ve gotten more reactive. I’m either less able or less willing to put up with additional demands on my senses. I’ve also got less patience for people who test me, and I’m less interested in “toning down” my autism to make others comfortable. (Unless, of course, they are guests in my house — then the rule is that I will cater to them, because they are guests.)

I have very low tolerance for NTs who take advantage of autistic folks to meet their own social needs — which pretty much seems like the case, when they’re crowding us in search of contact. I understand and appreciate the desire to connect, but what if I have no interest in doing so? What if I’m perfectly fine, just the way I am? What if I don’t need their community as much as they need mine?

That’s the thing I’ve really come to see, over time. I’m fine by myself. I prefer to be by myself. I don’t think it’s pathological or problematic. It’s how I’m built, and that’s perfectly fine. I don’t rely heavily on contact with others to keep my center, to keep myself emotionally balanced. Yes, it helps to have some contact with the outside world, but not nearly as much as NTs seem to need. And much of the time, I’m fine with having very little at all. But the feeling is seldom mutual — with NTs, anyway.

But that’s not a problem for the next 72 hours.

This weekend I get to stay home. Thank GOD.

I’m just counting my blessings — and there are a bunch of them to count.

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