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:

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.

 

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.

A place for everything in this busy life

interwoven mesh of different colors and shapes
Everything fits with everything else.

I have a lot going on, these days.

And it’s all good.

There are people in my life who encourage me to “slow down”… “take it easy”… not push myself too much.

The thing is, when I’ve got my proverbial “plate” full of all kinds of things I’m doing, I’m actually much better off, than if I’m pacing myself and not pushing my limits.

See, the difference between how I do things and how others do things, is dimentionality. That is, I don’t do things in a linear fashion. I can’t. I load them in on top of each other, and they fit together as different dimensions of the same types of activities.

It’s easier for me to write three books at one time, than do one, finish it, then start another. I have a bunch of books (more than three, actually) in the works, and I’ve been stalled for the past few months — mainly because I was under the impression that I had to take them one at a time… and not start the next, till I was done with the last. Huh. Yeah, that hasn’t been working. At all.

Likewise, at work, I’ve got a handful of different initiatives happening, and they’re all quite “exciting”… and not in a good way. Stuff keeps getting messed up, the different teams keep veering off course, and I’m not happy about it. The problem is, I’ve been trying to handle them, one thing at a time. And that’s not working. At all. I can’t stop things from happening at the same time, nor do I do well when I try to manage one project at a time. I need to “load up” and move everything forward in parallel.

I’ve really been doing myself a disservice, by trying to manage my projects and my overall workload in a sequential manner. That’s not how I work, it’s not how I function best. It’s a drain, in fact. And it frustrates me to no end, when well-meaning people urge me to “back off” and not push myself so hard.

News flash — I’m NOT pushing myself. I’m going with the unending flow of creative process. That’s where I need to allow myself to “be”. That’s how I need to allow myself to work.

If other people don’t have the capacity for this, it’s none of my business. But they also shouldn’t hold me back, thinking that I work exactly the same way that they do.

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