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.

 

The meanings of autism

Neo blocking bullets with his handI could have sworn I wrote a post yesterday. But apparently, I didn’t. It must have been Monday Morning fog getting to me… That seems as likely an explanation as anything. Actually, I had a very productive Monday morning – I got a LOT done in a relatively short period of time. Exciting things are a-brewin’… percolating away on the proverbial back burner… and also taking shape.

Woo . hoo.

Anyway, about this “meaning” business… This is an unusually long post for me. Call it longform, I guess. I got started, and the ideas just kept coming… and why stop, if there’s more to come? 😉 Who knows? It may become a longer piece.

The meanings of autism

I think a lot about meaning. What it… means. To me, meaning is all about making sense of life with a cause-and-effect world view. “Meaning” is, well, a means to a cognitive end. It’s how we get from a place of not understanding something, to understanding it. It’s how we interpret a bunch of (otherwise meaningless) dots in the sky as constellations or flocks of birds. Meaning is like the line in a connect-the-dots puzzle. It takes us from a place of chaos to a place of comfort. And it soothes our existential angst — even if the meanings you assign to things are based on flawed assumptions and really bad data.

It’s like we all have this internal compass about which causes lead to which effects. We have our belief structures that tell us what’s good, what’s bad, what’s helpful, what’s harmful. What action will lead to what reaction… what we think we can reasonably expect as a reaction to a certain action or input. And if something interrupts your idea of What’s Supposed To Happen Next, well, that something can make your life seem meaningless.

For example: We all have our preconceived ideas about how a typical human life cycle is supposed to go. Our ideas are formed by our environment, the people around us, what we’ve seen happen again and again. According to many people, it goes like this:

  1. You’re born, you grow up, and you do the adult things when you get there.
  2. You get a job, maybe you get married, maybe you have kids.
  3. If you have kids, then they do roughly the same growing-up activities that you did.
  4. They get on with their own lives, and they have their own kids, who then call you “Grandma” or “Grandpa”.
  5. Eventually, you age out and … die.

If something happens to interrupt or prevent that flow of expected cause-and-effect, that event can make everything seem meaningless. The master pattern that lets you organize your relationship to the world is compromised. Ripped… torn… in some case shredded, seemingly beyond repair.

A beautiful young person in the prime of their life isn’t supposed to die while their parents are still reasonably young. Parents are not supposed to survive their children. The death of a young, vibrant person is especially jarring. They “have their whole life ahead of them”, replete with all the expectations of what that whole life is going to be like. They’ll grow up. They’ll fall in love. They’ll start a family. They’ll get a good job and a nice house, raise the kids, take vacations, and attend high school football games on Friday nights, like the rest of their neighbors. If that trajectory is cut short… it’s just meaningless. Absolutely meaningless.

Now, our estimation of the meaning of a young life interrupted can be completely different, of course — and this is me being cynical — if they’re not white, not middle class, and they live in a locale where violence and early death are commonplace. Then, in some twisted, disconnected way, the death may “make sense” to everybody outside that world. They may have decided (with the help of the media and insular cultural conditioning) that the overriding pattern of “the ghetto” is violence, drug abuse, and kids being mowed down by gunfire. So, a mother burying her child — in that context — is not meaningless for those who expect that sort of trajectory. If anything, the tragedy and injustice just reinforce the underlying meanings people have assigned to those sorts of scenarios.

But if you take a lovely young white person who’s attractive and comes from a “nice family”… subject them to the same fate as a Black young adult from challenging circumstances… then their death can easily become meaningless within the culturally expected context.

Patterns, I believe, are that the heart of our meaning-making. We identify them, left and right. We have patterns for everything. For careers. For family life. For our own individual progression through developing relationships, skill development, and physical experiences. We have templates we pattern ourselves after, and we follow the lead of others whose model we want to emulate. Those patterns “promise” us that things will turn out a certain way. If you do this, then that will happen. If you choose this, then you’ll get that result. Obey the rules, and you’ll get to be part of society. Make sure no one notices what you’re doing, and you won’t get caught or get in trouble. Go to college, and you’ll get a good job. Our patterned expectations let us get through life without having to constantly rethink things, every time we turn around. They’re cognitive shortcuts that let us function along certain lines in the world without having to “reinvent the wheel” every time we come across a novel situation.

Just follow the patterns laid out by others, and you’ll be fine. Others have been here before, and it worked out fine for them. As long as things go as expected, it all makes sense… to us, as well as to everyone else like us who shares our belief in the validity of those patterns, and uses them to make sense of the world in general.

Now that’s all very well and good. But it’s also a somewhat fraught aspect of life. Because what if someone latches onto a certain pattern that’s actually not validated by facts and real-life experience? What if someone with a budget and a marketing department decides to invent their own patterns, their own interpretations of how the world works? And then what if a gazillion other people (who may be looking for a pattern to help organize their own thinking) latch onto that… and the pattern gets propagated across a wide population, offering a fundamentally flawed framework for avoiding really thinking about stuff? Well, then you have a problem.

Then you have the Autism Industrial Complex.

Our current popular (and supposedly scientific) definitions and interpretations of autism seem to be little more than a deeply flawed set of manufactured-and-well-marketed meanings overlaying outmoded (or not-always-applicable) assumptions about the human condition. Infants are supposed to reach certain milestones in their first years. Children are supposed to talk and play a certain way. Teens are supposed to behave and develop along certain lines. Adults are supposed to be interested in certain things, behave certain ways, interact along certain lines.

And if you don’t fit in that mold, you’re a threat. Not only to the people around you who rely on your compliance to make their world feel less intimidating, but to the science and the cultural guidelines which rely on all our compliance for their ongoing authority. If you don’t fall into an acceptable range, you’re a problem.

But the real problem is the hidebound, autocratic dictates of “normalcy” which dictates what The Only Acceptable Developmental Path is for children, as well as adults. So we don’t talk by a certain time, walk by a certain time, react in certain ways, interact in certain ways… So what? Those preconceptions and (let’s admit it) artificial dictates don’t always apply to everyone all across the board, especially autistic people.

We most certainly can (and do) develop in our own ways that allow us to be quite functional in unique ways. Autistic folks have been contributing to societies and cultures since the beginning of time. You’re welcome. Yet current assumptions about what all our non-compliant development, behavior, and interests means still strikes fear in the hearts of our parents, families, healthcare providers, government agencies, educational institutions, and larger communities. We don’t fit their pattern. We don’t slot neatly into the pre-ordained compartments that we’re assigned. And our lives, our realities, our ways of being become meaningless to everyone who doesn’t understand us.

If you Google “autism meaningless“, you’ll get about 408,000 results.

Indeed, seem to come across that term “meaningless” a lot when I read about autism. It’s like there’s some phantasmagorical mystique about us that’s utterly mind-boggling, intimidating, yadda-yadda, that’s just too juicy for the mainstream to resist. We walk on our toes. We talk endlessly about a narrow range of subjects. We make strange motions with our hands. We repeat certain sounds or phrases. We don’t do small talk. We struggle with holding down jobs and dealing with the police.

We don’t fit. We don’t conform. And the rest of the non-autistic world goes on high alert. Because not only do we not fit and conform, but we challenge their most fundamental assumptions (fondly identified and sanctioned patterns) about what it means to be “human”.

Of course, it doesn’t help that leading researchers are telling the world that autism makes us less than human. That’s not helpful at all…

But our non-compliance, our meaninglessness serves a larger purpose, actually has a place in the larger world — albeit a twisted one. Our obvious differences normalize” the rest of the non-autistic world, by right of our very existence. When they call us “abnormal”, they implicitly re-validate the standards of “normalcy”. When they label us “wrong”, they reinforce their own ideas of “right”. When they declare us “disabled”, they more firmly cement in their minds what constitutes “abled”. We serve a conceptually valuable purpose for non-autistic folks, in that respect — though it’s more to their (questionable) benefit than ours.

Never mind the fallout that blankets our lives in a socio-economic version of nuclear winter. Never mind the impact on us. The dominant paradigm has been supported and validated. Woo hoo. </end sarcasm>

The reason that autism seems so “meaningless”, as I see it, is not so much that we’re stepping outside the expected range of acceptable behavior. Rather, the range of what’s expected and accepted is way too narrow for modern use. Our manufactured-and-marketed vision of what is beneficial, what is acceptable, what is harmless, has gotten pretty cramped. Insular online communities have contributed to this narrowing, allowing people to hang out with only those who think and believe as they do, who will gleefully join in with the mockery and example-making of people Not Like Them. Our meanings are exclusionary, not inclusive. Our patterns are restrictive, not expansive. Our interpretations are tied up in misconceptions, half-truths, and propaganda served up by popular media (including social media) that serve no one except those who profit from clickbait. And — let’s be honest — the world has gotten so overwhelming and dangerous for all of us, most people don’t have a ton of extra energy for thoughtfully exploring the deeper sides of life.

And that happens all across the board — whether you’re autistic or allistic… whether you’re a parent of an autistic child… or a grown-up autist with/without autistic/allistic kids of your own. Politically, people have split into factions that don’t have anything to do with each other. Neighborhoods and locales are sharply divided across socio-economic/ethnic lines. And our pattern-finding and meaning-making just harden the cement of our intransigence, as every interaction serves to confirm our biases, rather than challenge them.

All this narrowing comes at a cost. And where the Internet and globalization have promised for decades to make us more cosmopolitan, more inclusive, our non-machine aspects have yet to expand enough to usefully encompass a wider set of meanings around much of life — especially autism.

So, what do we do? What can we do? Do we ditch all our preconceived notions and wade into the morphing reality field with a completely open mind? I think not. We need some sort of structure, some sort of pattern, to order our thinking and make sense of the world. We need our frameworks to understand what we should think, how we should think, and what to do with the thoughts rattlin’ ’round in our heads. We can’t hope to take action, unless we can map an actual path to follow. If we don’t have a direction, if we don’t have a deliberate aim, we just wander in circles.

And that’s how people fall prey to the meaning-makers (like Auti$m $peak$) who offer an “official line” of thinking that’s a seemingly solid alternative to the conceptual malaise that bogs us down in all things autistic. Their official version of what the hell is up with that child/adult promises relief from confusion and fear. It seems to clearly map the cause-and-effect landscape of autism… or at least try to. They’re looking high and low for a cause. They’re chasing after a cure. Please make your tax-deductible check payable to ____________.

What organizations like that promise — with their oversimplifications, their perfunctory declarations of Eureka! interspersed with bouts of fundraising — is the thing people crave: Meaning. Sense. A way to understand the past and present, so that the future can be charted. They identify valid human needs for sense-making, and they promise to meet those needs. They don’t do it the way we autistics need them to, but that’s beside the point. They dive into the gaps between what-is and what-makes-sense, and promise to fill them, carving out a niche by defining their own set of hard-and-fast meanings and making them widely available to a populace that’s hungry for reassurance.

The thing that solidifies their position is the perception of meaningless in autism, the lack of understood neurodivergent patterns, and the misapplication of cause-and-effect thinking. They take advantage of popular ignorance, and they overlay that ignorance with a potent combination of FUD (fear, uncertainty, disinformation) and ideas that feel accessible, that seem to make sense. They tell coherent stories, they keep their accounts consistent with their party lines. And because they’re so seemingly coherent, so forceful, so convinced of their rightness, people trust them. They trust the “sense” of them, the aura, the inspiration of confidence. Parents and other people with so much on their plates really appreciate any help in understanding what’s going on with their autistic loved ones — even if that help isn’t 100% accurate. Even if they’re being lied to.

It’s really about the feels.

Ultimately, it feels to me like we’re fighting a losing battle against these forces. As long as we operate in the manufactured-and-marketed realm, the mass market of information, the consumer culture where doctored numbers are commodity for sale, we’re going to be outmatched by these people. They have the whole dog-and-pony-show “down pat”, and they speak in a way that everyday consumers can hear and appreciate. Organizations like A$, researchers at leading institutions, and everyone who’s cashing in on the Autism Industrial Complex have cornered the market. Because to them, it is a market. A means to an end — their own profit and continued agendas.

But taken individually (we’re autistic, after all), there’s more we can do that’s got real potential for some transformational change. Nobody can force us (or others) to believe something against their will — and against their sense of self-preservation. And those of us who are able, who are making sense of what autism means to us, are in a pretty enviable position. We can identify our own patterns and live them. Freely. On our own terms. We don’t have to run around with “Look at me! I’m Autistic!” t-shirts and accessories, but we can certainly live true to ourselves in our own ways — thinking independently and sharing those thoughts with others in ways that get them to stop and think.

I really believe that’s what a lot of people want — and need. Especially allistic / non-autistic folks. They’re constantly being herded in one direction or another, baited and switched, attracted and duped, treated like just another target market. And they don’t always like that. In fact, it’s often been my experience that they relish interacting with people who are free thinkers, who allow them to think freely, themselves. When I speak my mind and let others speak theirs… when I share what I love and then listen attentively as someone responds in kind… when I say out loud what a lot of people are afraid to, without expecting / demanding that everyone agree with me… well, there’s freedom in that.

So often, people turn to others for meaning. They look to the dominant paradigm, they peer out their windows to see what the neighbors are doing/buying/saying. And sometimes that may work. It may make the world seem less overwhelming, less intimidating. But in the end, I believe we’re all responsible for our own meanings, or own sense of what’s what. And I also believe that, within each of us, there burns a flame that seeks the oxygen of freedom, and it flares up a little higher, a little warmer, a little more brightly, when it encounters that freedom.

Meaning is truly in the eye of the beholder. So, rather than allowing others to define it for us, rather than accepting what’s been foisted onto others, by being true to ourselves — our deeply autistic selves — let us find our own meanings in the true details of our lives, the patterns we recognize, the progression of healthy causes and effects, as well as the lessons from choices that didn’t go well at all. And as we become stronger in our own beliefs, our own representation, our own presence in the world, our example may just help others to step out of the matrix of the manufactured-and-marketed concepts of the Autism Industrial Complex, to make up their own minds. To find their own meanings. And yes, to find a deeper humanity they can’t find anywhere but inside themselves.

Improving research about us, with us: a draft framework for inclusive autism research: Disability & Society: Vol 0, No 0

dark silhouettes of people in the distance with bright flashes of light crossing them
Who’s on the outside? Us or them? Or both? We’re so divided from autism researchers, through systemic barriers that are, sorry (not sorry), just ridiculous.

It always gives me the creeps, when I read research / studies about autism written by clearly neurotypical people who haven’t an ever-loving clue what it really means to be autistic. I firmly believe that this tendency stems from the social sciences, which dictate you must have some distance from the subject(s) of your studies to be objective and unbiased. Anthropology demands it. Sociology, too. Psychology and psychiatry seem likewise inclined.

The only problem is, studying autism and autistic people isn’t like studying the Yanomamo in the Amazon. Or Lakota of the Rosebud. Come to think of it, those folks never should have been shunted to the margins of the studies about them, either. I would hazard to say that, actually, the whole idea of excluding “subject populations” from active participation in studies about them is fraught with … er… stupidity and hubris. People on the outside often have NO idea what’s actually happening in the scenes they observe. And yes, while personal involvement can cloud your vision, so does ignorance and presumptuousness.

Not to mention treating living, breathing, feeling human beings like subjects.

On the bright side, it always heartens me a bit when I see research being done that includes autistic folks and/or advocates more inclusion of an autistic point of view. I mean, seriously, who could ask for a better “target population” to help inform studies about us? Our very natures can be highly objective, scientific, insightful, sensitive far beyond the capabilities of neurotypical researchers. And we understand what things mean to us. What they mean in general. We’re ideal test subjects, so why wouldn’t researchers line up to recruit us?

Huh?

Oh, I can think of a reason — our issues. Like anger. Like rage. Like pain. Like all the things we experience on a daily basis that are incredibly difficult for someone outside our sphere to accept, or even grasp. Those of us on the inside have these intense experiences that people on the outside often dramatize and make into a horror.

Case in point: I sent my Dad a fantastic longform piece “Every Body Goes Haywire” about what it’s like to live with chronic migraine. He doesn’t have migraine issues. He’s got pain from his own illness, but he has never dealt with it over the long term. Not like me. He didn’t even realize I was having migraines, all those years.

I thought the article was great! Such a fantastic read. I thought he’d appreciate it. But then he calls me on the phone and tells me how grueling a read it was, how depressing, how painful to imagine. He’s highly empathetic and very sensitive, himself, so maybe that’s to be expected. I just realized, this morning, what a difference it makes to read about something as a participant, rather than an onlooker… to identify with something, rather than hear about it from a distance.

That’s one of the hurdles that plagues autism research, I think. Neurotypical researchers may get a bit secondary trauma while talking / working with us. They come up with their own interpretations of what the autistic experience “must be like”… and it’s just not good. So, we get crowded out, as a result, ’cause really, who wants to be burdened unnecessarily by experiences that just bring you down and cloud your logic?

Who indeed?

My hope is that autism research will have us all come together, bridge the gaps, and actually make some progress in terms of better understanding the autistic experience and teasing out the joys from the horrors. It’s not all awful. Even if others think it is. It’s a challenge, that’s for sure. But that just keeps us sharp and invested.

Now, here’s what I originally wanted to share:

Abstract

It is both epistemologically as well as ethically problematic if the autistic voice is not heard in relation to social scientific research seeking to further develop knowledge of autism. Ever since autism first emerged, it has remained medicalised and almost exclusively the preserve of non-autistic researchers. More recently, autistic individuals have begun to contribute to autism research. However, the vast majority of research in autism is still undertaken on autistic people, rather than with them, and is often not concerned with improving the day-to-day lives of people with autism. We discuss the concepts of participatory research and emancipatory research before presenting a draft framework for what we regard as truly inclusive research in autism. Our proposals are firmly based on ideas developed by the members of a university-based group of autistic adults (the Asperger’s Consultation Group) as well as the knowledge and experience of the other contributors.

Source: Improving research about us, with us: a draft framework for inclusive autism research: Disability & Society: Vol 0, No 0

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.

#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.

#AutismAwareness Month – What others think of me, is none of my business

Herakles and the Hydra Water Jar (Etruscan, c. 525 BC) - Herakles clubs the Hydra, while a crab assists it by attacking Herakles
It’s much easier to not even engage. Or is it?

It’s April. There’s a ton of mixed information about Autism churning through the aethers.

Lord help us.

I was getting all spun up about it, over the weeks leading up to April. Bracing for the onslaught. Girding my loins for war. Bristling at the thought of how often I’ve been told I can’t be autistic, frustrated at the lack of information — and the disinformation that’s being spread by ve$ted intere$t$ out to make a buck. Getting tweaked about what others think of me, or would think of me, or how they’d respond to me.

I have to say, I would love to rectify a lot of this, myself — inject some elightenment and enhanced autism awareness in the general populace. Even in my own family.

The thing is, a lot of what I think other people think / feel / assume about me, is inaccurate. Let’s face it — autism, in my case, is accompanied by social cluelessness and a really compromised ability to interpret what others are saying / thinking / feeling on the surface. Plus, I’ve got a supremely heightened awareness of what people are saying / thinking / feeling beneath the surface.  So, in some cases, I know more about them than they do. And that just leads to more confusion and “crossed wires”, when I try to engage with them.

People generally aren’t in touch with whats’ really going on inside of them, and when you interact with them on a deeper, more authentic level, it scares them. Because they can invest a whole lot of time in overlooking, denying, avoiding what’s really going on inside of them.

And it occurs to me, maybe this is really the crux of “social disconnects” between autistics and non-autistics — we autistics relate to how people really are, on the inside, while non-autistics expend huge amounts of energy avoiding how and what they truly are, deep down inside. And autistically authentic interactions scare the crap outa them.

Hmmm… maybe I’m onto something here… Well (shrug)… whatever.

Anyway, here’s the thing — I’m not getting spun up over all the ignorance and discrimination towards me, this month. Yes, it bothers me tremendously that there is still so much ignorance and lack of acceptance. Yes, I know it causes pain. The thing is, I’m not going to let it cause me more pain than it really does.

As in, I’m not going to fret over the rest of the world not “getting” me, not accepting me, not recognizing me for who I am. The rest of the non-autistic world frankly has no clue, and they have no reason to get a clue. They’re wrapped up in their own self-centered worlds, their own limited visions, their own officially sanctioned versions of reality. I have no control over that. And I’m not going to make myself miserable, living in constant reaction to that.

I have to advocate for myself.

I have to make it plain what I need from life.

I have to take responsibility for caring for myself, managing my environment and situations so that they don’t make me miserable.

I have to do my part to minimize my misery, to tell others what I need from them on a case-by-case basis, to not expect them to read my mind and anticipate what I need — because that’s so very different from what they expect and assume.

I have to put my “big girl pants” on , and deal with it. Because no one else will do it for me. Sorry. No government agency, no charity, no organization, no support group, no team of helpers is going to come to my rescue. They’re just not.

And that’s not necessarily a terrible thing.

When it comes to the whole autism awareness / acceptance thing, it seems to me that people assume certain things are going to result from an up-tick in both those things. That people will be more considerate. That they’ll understand more. That they’ll be more accommodating. That they’ll be more open and receptive.

I must be living in a very different world, because I expect none of those things to happen. People are self-centered — especially non-autistic people. They feel overwhelmed and put-upon in general, and they (from what I’ve observed) make every effort to surround themselves with like-minded people with similar characteristics and personality profiles.

And that doesn’t include autistic people, for the most part. Unless they have no clue that you’re autistic. Then you can be their friend.

Maybe that’s a Terrible Thing. Maybe it’s not.

Anyway, where that leaves me is with a divine indifference to the opinions of the general populace, when it comes to me and people like me. That also extends to opinions of the autistic “community” (such as it is), who may or may not agree with my point of view. I’ve been attacked. I’ve been blocked. I’ve been criticized and called “irritating”. Okay, fine. People are free to believe what they like. In then end, we all find out if what we think actually works. If others want to devote their lives to anger and outrage, that’s their lot. Not mine. I’m certainly not devoting my life to their anger and outrage.

It’s quite freeing, really, to let it go — to not get spun up over what others thing (good or ill). Not worrying about the drastic dip in my blog stats (“Augh! Nobody’s reading my stuff! Boo hoo!”) or the lack of follow and likes on Twitter and Facebook (“Oh no! Nobody’s noticing me! I’m so alone!”) … letting go of those standards lets me really, truly concentrate on the work itself, the writing in and of itself, the projects I’ve got going that add so much to my life and help me live the best way possible — for me.

I’m considering going for a whole week without checking my stats… not sure I can do it, but my stoic practice my require it. We’ll see how that shakes out.

Anyway, when it comes down to it, getting twisted up over what others think of me, is a recipe for despair. I have no control over it. I have no influence over strangers’ opinions. Everybody believes what they believe for very, very good reasons, very few of which I can discern. So, it’s best to let that go. Live my life. Write my words. Put them out there for others to read (and hopefully benefit from)… without getting too invested in a specific outcome.

It sounds a bit zen-like, and maybe it is.

At the core, however, it’s logic. Just reasonable logic. And I like that. Logic works for me.

When all else fails — including my estimation of others’ states of mind.