My very ordered “disordered” life

cable span bridge sliced in three sectionsIt always puzzles me, when people call Autism a “disorder”. Seems to me, a lot of autistic folks have a hell of a lot more order in their lives than the rest of the world.

I have my routines. I have my regular stuff done at regular times of the day. I have my regular activities pursued at regular intervals. I have a really great cadence which, unless it’s interrupted, allows me to get a whole lot done in a very small window of time. In the course of an average day, I can have a to-do list that runs off the page of the 4×6″ stickie note I keep in my daily minder. And I will get everything done — and then some — in a seamless flow of “Okay, that’s done – what’s next?”

I tell people what I do each day, and they shake their heads and tell me that I do “too much”. But for me, that’s just how things flow. In fact, everything works better for me, if I have a whole lot of stuff lined up in a seemingly impossible jumble of imperatives.

Something about “juggling” (it’s not that at all, come to think of it) stimulates my visual-spatial thinking, prompting me to see the world in a very different way than the verbal, sequential folks who surround me. My way may look like “controlled chaos” to some, but it’s nothing of the kind.

It’s all very orderly, I have to say.

It might not make a lot of sense to others. Of course it doesn’t. Not if those others are neurotypical. Not if those others are not visually-spatially inclined. Not if those others’ priorities are with skating along in a standard-issue life, doing what they’re told, living up to others’ expectations, and fulfilling the requirements laid out for them by society at large. In some cases, you need only meet the basic requirements of mainstream society, to get by. Assemble the right kind of family. Get the right kind of job. Wear the right clothes. Drive the right car. Buy the right stuff — and make sure everybody knows about it. And you’re set.

That doesn’t work with me. I have priorities other than social acceptance and accruing stuff. Even if I do try to pay attention to those things (and I do try, every now and then), I rapidly lose interest, because they really serve no greater purpose in life, other than to make me feel a little better about my lot. I want to change my lot in life, not make a grudging peace with it and make myself comfortable till the grim end comes.

And so, the rationale and the reasons behind creating certain kinds of “order” in my life evaporate. Because they just don’t work for me.

Now, if you turn things around and turn a lens on the rest of the world from my perspective, all the “disordered parts of my life start to look very ordered, indeed. There’s an excellent reason for everything I do, and chances are, I’ve given it a whole lot of thought before starting to do it. Even the things that I haven’t deliberately put in place, if they’re in my life, they serve a vital purpose. Or they wouldn’t be part of it.

The ritual I follow each morning serves to get me up and going in the morning in an efficient and energizing way, without needing to spend too much time on reinventing the wheel of my morning activities.

The specific sequence I follow to get myself groomed, exercised and fed each morning, I’ve developed over years of practice and trial-and-error. It would take too long to explain each step, to go into it now. Just know that the specific sequence I’ve developed has been for a very good reason.

How I get to work, how I set up for my daily activities, the times I eat, the things I do to perk myself up or calm myself down… it’s all for a reason. For a number of reasons, actually.

If people (friends, family, loved-ones, clinicians, researchers) would look more closely, they’d see the reasons. And if they could spend a day in my shoes, living in my own experience, they’d totally see the logic of it. And they’d congratulate me for coming up with such an elegant system.

Ultimately, I think the origin of at least some of the “disorder” talk is the lack of understanding among researchers. And parents. And loved-ones. And, well, anyone who isn’t privy to the logic of my / our systems. Those who don’t understand Autistic ways and thought patterns. It’s easy to be put off by something foreign and unfamiliar, and (often-times) that would be us.

It would be wonderful if we didn’t have to verbalize everything for folks who see us as disordered… if they could actually experience our lives as we do. Maybe virtual reality will make that possible, someday. I think it already is, actually. But it’s going to take more than a VR session to get people educated and informed.

We’ve got our work cut out for us, that’s for sure.

In the meantime, I’ll go about my business and tend to my systems, my own individual order.

Regardless of what others have to say about it.

Everything has its place, I suppose

line drawing of a laptop and papers hanging neatly on the wall behind it
I like my stuff properly arranged. Of course, not everything is going to line up exactly. A little asymmetry can be creatively inspiring.

Last evening, I saw a handful of folks I haven’t seen in a while.

It was good to reconnect. They’re all a bunch of Aspies, and it was cool to just hang out and talk about what’s going on in our lives. It’s pretty wild, how many similarities there are, with detailed variations, of course. We got to trade tips and tricks on stuff that stumps us. There were some ah-ha! moments that we all enjoyed. And some laughter. And we all got to reassure each other that we’re not completely alone in a world that can’t seem to be bothered to understand us.

It’s Friday! I’m so looking forward to this weekend. Getting back on a schedule, after a week of surprise meetings and stuff not going according to plan. I have to get my routine fix while I can. I’ll be traveling in less than a week to spend time with family in the Atlanta, GA area. It’s crowded there. And hot. And busy. And there’s a lot of family drama going on, which drives me to distraction. People whipping themselves into a frenzy over a perceived slight. Where’s the logic in that? We’ve got three days of that to look forward to (so to speak).

I don’t want to go. I dread it. I really want to just ditch the whole thing, and I’ve shed anguished tears at the prospect of what’s ahead. But there’s no avoiding it. It’s important to go. So, I’ll steel my proverbial nerves and just hang in there. Focus on one small thing at a time. See what I can learn about myself and the world. Treat it as an anthropological expedition — and always-always-always keep in mind that it’s only for a few days. All I have to do is keep steady, keep an even keel, keep a level head, eat right, get enough sleep, and persevere.

I’m good at persevering. It’s what I do. It’s a much-practiced skill.

So, this upcoming trip is just another test. Another chance to learn a thing or two. I still have to do some basic things — like reserve a car at the airport. Figure out what to pack. I’m less concerned about the car situation, since, well, it is the airport. I need several hours of free time to sort through my options and pick the best one. And after I figure out my part, the overall logistics have to be figured out and solidified with my partner and her family, so we know where to go, what to do, and in what order.

The dysfunction of family dynamics is so tiring. I’m trying to not pay much attention to the lying, cheating, sneaking-around people who are trying to manipulate the whole event. That’s fruitless. I’ve learned that over the past 26 years. I’ll just go with the flow and enjoy myself as best I can. If nothing else, this will be character-building.

Just think how much character I’ll have at the end of it all! 😀

Oh, and then I have another trip to San Francisco less than a month later. That’s for work. A conference. Learning and working and — most importantly — no family involved. It’ll be a challenge, because it is travel, it involves business, and I’m headed into unfamiliar territory.  I used to live in northern California, years ago, so I may see some of my old “stomping ground”, but probably not much. I’ll be traveling alone, pretty much, which is fine. But that means I’m probably not going to range far and wide and see the sights like I used to, when my partner was with me.

Or, I may see some sights with my co-workers. Who knows? I’ll need to figure that one out, I suppose.

Anyway, so it goes. I’ve got a nice empty schedule today. And my 8:30 meeting just got moved to Monday, so that gives me even more flexibility today, to catch up with everything I haven’t been able to get done this week.

And have a little routine. Get to the office around 9:45, settle in, eat some cereal at 10:15, respond to pending emails and prep for my noontime meeting, have some lunch, do some more work, go for an afternoon swim, then finish up the day with getting outstanding stuff sorted out. Sounds like a plan.

Oh, and plan. Plan. Plan some more. Things rarely turn out exactly the way I anticipate, but having a plan helps me organize my thoughts and at least have the general impression that I’m prepared for whatever comes along.

It’s all good. It’s Friday. I get to move at my own pace. Quietly. Swiftly. With everything in its place. As it should be.

Oh, sweet peace.

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:

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.

I have to wonder, what’s going to happen to me when I get older?

old woman with face in hands
It worries me, to be honest

I was talking to a couple of different folks over the past few days, and the question of aging came up. I’ve got a birthday in another month (exactly), and I always think about my “trajectory” ’round about this time of year.

How have I been doing over the past year? Am I happy with my progress? Where could I have done better? I can always do better, so where can I make some positive changes?

And while I’m actually doing really well with myself, right now — I’m healthy, I’m happy, and I am so much better able to manage, now that I’ve got the whole Autism mystery identified — I wonder what it will be like in the future.

How will I get along? I don’t have many friends. My family isn’t in any position to take care of me. My nieces and nephews don’t seem to realize I exist, unless I’m standing right in front of them. I have no kids who can take care of me, when I’m older. And how long will I be able to work?

There are a lot of unknowns for me.

And the thing that concerns me most, is probably how I’ll handle myself in medical situations in the future. I notice myself becoming “more autistic” as time goes on, less inclined to communicate, stumbling more, shutting the world out more. While that’s all very well and good while things are going well, what about when I need help?

Will I even be able to articulate how and why I need help? Or to what degree?

I just don’t know.

And I need to figure something out. Because the unfolding pattern of that thought isn’t particularly encouraging.

When the little #autistic components of life click into place

picture of two people facing each other, person on the left has a gray brain, person on the right has a rainbow colored brainI had a very nice chat with someone today about how autism affects my life. And in the process, I realized some things that hadn’t occurred to me before.

Namely (and I may think of something else, eventually), I don’t really lose a lot of sleep or get terribly agitated anymore about social “gaffe-ish” situations. I’ve got my stock set of responses to social / interactive situations that confuse and puzzle me — especially those which seem pretty useless, e.g., when they center around mindless jabbering while eating cake.

I’ve got a standard way I react to people, a standard way I hold myself and I echo / mirror other people’s behaviors. I have a stock set of responses (“Seriously!” or “Really?!” or “Oh, I know!”) which I generally rattle off without even knowing what I’m reacting too. It takes time for me to parse the information that’s coming it, translate it to pictures, make sense of it, generate new pictures, and then translate it back to words that may or may not mean anything to others. I usually don’t have that kind of time to respond genuinely, so I just spout out this mindless blather. I miss a lot. Including the point of being there. But oh, well. So it goes.

And you know what? I don’t care. Because the vast majority of what’s going on is vacuous and inane. It’s generally not anything I care about. But I still need to be around people. If I don’t interact with others on a semi-regular basis (God help me), I become suspicious and mistrusting, caught up in my own internal dramas that may or may not have any basis in reality. I need feedback from other living, breathing people to help me steer myself in the proper direction – not off a conceptual cliff.

So, I get what I need — some interaction. But I don’t pay much mind to most of the content. Especially when people are hanging around in a crowded, noisy space (why do people like places like that, anyway?). Then, it’s purely a matter of socially getting by. Doing the bare minimum. Satisfactorily completing the social interaction in ways that don’t harm me — and may actually add to my own social cred.

I do what I have to, reap the rewards, and move on.

I just don’t expect much from it. And so, I am seldom disappointed.