The meanings of autism

I 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.

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.