I’m not a huge fan of eye contact. It’s painful for me, if I don’t know the person I’m interacting with. It’s a veritable minefield, chock-full of potential disasters, if I “do it wrong” — look at someone too long, don’t look at them long enough, “send the wrong signals”, etc.
You know the drill.
To say I hate making eye contact, would be an understatement. I loathe it. I don’t see why everybody has to do it, to begin with. I know the rest of the world is there, even if I’m not Looking It In The Eye. I can hear without staring at someone’s eyeballs, thank you very much. And it’s just so painful at times…
But still, I “do eye contact”. And it’s for totally self-centered reasons.
See, I’ve found the thing with non-autistic people is that they tend to be driven by unresolved trauma — particularly childhood trauma at the hands of irrational / explosive parents. There are so many non-autistic folks whose every action and reaction is driven by ingrained childhood trauma responses, that they literally think it’s “normal” for them to behave the way they do. After all, if everybody’sgetting freaked out by certain ideas and behaviors… if everybody’s reacting in the same way to ideas and aspects of life that might be threats… if everybody’s jumping on the proverbial band wagon to overreact to their triggers, then that must be normal, right?
I’m not going judging anybody, I’m just making an observation. And considering my own “trauma load”, I can totally relate to others whose lives are so heavily dictated by stuff that happened and/or was done to them.
Okay, back to eye contact.
I’ve lived the last 26 years of my life with someone who has to make eye contact, or she feels immediately threatened. That sense of threat triggers a whole cascade of critical-thought-inhibiting stress hormones that prompt her to react and think about situations in ways that feel correct, but objectively speaking are counter-productive and (dare I say it?) damaging. The threat response kicks off before she can even think about it. It’s instinctive. And while her instincts may have saved her, when she was a little girl, they’ve not really helped her a whole lot in the course of her adult life.
Then again, maybe they have… Because everybody she deals with seems to behave the same way, and because her behavior is familiar to others, she’s wildly successful in a social sense — far moreso than I am.
Anyway, her need for eye contact seems to trace back to her early childhood, when her parents were really dangerous to be around. The main signal that they were about to get scary, was when they went silent and wouldn’t make eye contact. That signaled that they were about to become A Problem. They were about to become hazardous to her health.
If they were making eye contact and being verbal, that signaled that they were Safe.
If they weren’t making eye contact, and they weren’t talking, that signaled that they were Not Safe.
And if they weren’t Not Safe, some pretty terrible things could happen — the kinds of things that scar you for life and get ingrained into your wiring. I’ve been co-habitating with the effects of that sort of wiring for over a quarter of a century, and the more I understand it, the more inclined I am to accommodate my partner and make the eye contact she needs to feel safe.
Even if it isn’t always (or ever) comfortable for me.
I also keep this in mind in the world beyond the walls of my house. There are so, so many people who’ve been traumatized by silent parents who stop making eye contact right before they explode. We have no idea who those people are, and how many of them there are. And when we don’t make eye contact, that’s the rough experiential equivalent of demanding that Autistic people Do make eye contact. It’s painful. It’s frightening. And it stresses people out.
So, what’s the solution? I can’t speak for anyone else, but this works for me:
Compassion for others I’m interacting with. Understanding that if they need eye contact, then they might have gone through some pretty rough stuff at the hands of people who stopped looking at them just before they started to beat the crap out of them.
Accommodating them accordingly. Standing in a way that faces them, holding my posture in a way that communicates I’m friendly and I’m not going to attack them. Using prosody — exaggerating the “lilt” of my spoken language to calm them down, which it actually does.
Accommodating myself. Looking intermittently at their eyes, but not enough to stress myself out… mostly focusing my gaze on parts of their face that are near their eyes, so they think I’m making eye contact, but I’m really not. Stimming in ways that are hidden, yet effective.
Remembering — always remembering — that whatever triggers they’re dealing with, they may not recognize because they’re so commonplace and so “normal”. And as a result, they have practically no awareness of those triggers and the effects they have on people like me.
Just hanging in there, till it’s over. No, it’s not pleasant. Yes, it can be pretty damn’ uncomfortable. But very little in my life is simple and straightforward and 100% pleasant, so this is no different from just going about my daily life. The effort is worth it, because it makes it possible for me to work and play and interact with the rest of the world and have the kind of life I want.
So, this trip has been interesting. I have 11 hours to go (and yes, I am counting), till I get to leave the office, get in my car, and drive to the airport. Then, I’ll have yet another bite to eat, board the plane, and fly home.
I can’t wait. I’m done here. I was supposed to have dinner with an Aspie friend, last night, but I ended up having to do a work team-building thing — going out to dinner with my coworkers, and then having ice cream afterwards. It was a good time, and I enjoyed hanging out with them. Just like I’ve enjoyed spending time with other folks, discussing work and other subjects, and everything that goes along with networking for work.
Sure, I enjoy spending time with these people, but when do I get time to decompress? All this peopling has been incredibly taxing. It’s exhausting, no matter how much I enjoy it. There’s too much to take in, too much to process, and all of it’s happening in an environment that’s inherently hostile to me and my sensibilities on a profound level. Everything around me is too too loud, too bright, too frenetic, too superficial, too political, too… everything.
And not an in-depth idea in sight, from what I can tell.
I’ve spent the last four days skimming the surface of life, and it’s about as much as I’m prepared to indulge. Everybody’s saying I should stay longer. I should spend more time. I should even move out here. They like me. I like them. We get along. There’s a fair amount of love between me and my coworkers here, and they enjoy working with me.
But it’s a one-way street, social and mentally speaking. I’m the one working overtime to fit in and adapt to their ways. I’m the one putting out the effort to blend and be a responsible individual who cultivates positive social interactions. I’m the one who’s bending over backwards (metaphorically) and putting a cramp in my back (literally) to adapt to their schedules, their food choices, their priorities, their values.
Very, very little of what goes on here and what people care about appeals to me. Living a classic American conspicuous hyper-consumer lifestyle in ways that support and further the dominant paradigm (as well as the economy), and structuring your life around your popularity, social standing, and political connections are about as far from my main priorities, and you can get.
It’s just so vacuous… I feel like I’ve been living at an extremely high altitude for the past week, with very little oxygen, no trees, and no signs of diverse life to be found.
And nobody around me seems to notice, which worries me.
I mean, I like the people I work with. But at some point, I need to talk about more than office politics, as well as their mainstream lives. I need to discuss more than what people had for dinner the night before, or what the school schedules are. I’m out of place, but I’m the only one who notices, because I follow other people’s leads, and I play to their strengths. It’s much easier to interact with people, when I make them the center of attention. They love it. They love to talk about their lives, their cars, their kids, their hobbies. But very, verylittle of it has anything to do with queer little ole me.
Which is pretty much the story of my life. Not much around me has anything to do with me or my values, my priorities, my interests. Never mind what I would have talked about, if I’d been able to go to dinner with my friend last night. We would have riffed on abstract concepts for hours. But alas… alack… All I have to show for dinner last night is a dessicated, intellectually barren experience, where I’ve worn myself out interacting with people nothing like me at all, doing things that don’t interest me… and there’s always the chance I’ve insulted someone without intending to.
I get to go home today. Back to my books, back to my routine, back to my regular eating and exercise schedule. Back to my house, my partner, my queerness, my nonbinary, noncompliant ways, and the life that I’ve structured exactly the way I want it. Back to my quiet, my peace, my steady cadence. Back to my ideas. Back to a place where I can actually think, instead of being rushed and pushed and cajoled and coerced into meeting someone else’s cookie-cutter social needs, on someone else’s time, according to someone else’s idea about how things should be done.
Well, I’m sure I’ll get some insight from this trip, on down the line, but for now, I’m just really relieved to be finishing up my stay here and going home this afternoon. I’m sure I’ll be back here, sometime in the not-so-distant future, but for now, I’m looking forward to getting my life back to how I want and need it to be.
The day is starting. Let the games begin. Again. For the time being.
* Note: I’ve spelled “rigor” with a “u” (British spelling) because it actually feels more rigourous 😉 Ha ha! Just having a little semantic fun on a Friday.
This is another one of those dog-tired days, when my mind is spinning and I have no idea how I’m going to get through the day. I’ll get through it, of course. It’s what I do. But in one piece? In a good frame of mind? I dunno.
I have to deliberately remind myself of the fact that I’m tired, because I tend to lose sight of that. I get so tired, I can’t figure stuff out — including what sorts of emotions I’m having, and what I should do about them. I get physical weariness confused with depression and low self-esteem. It probably sounds strange, but a lot of different emotions feel like each other to me, so I have to sort them out logically, scientifically, objectively, in order to not get dragged down into an emotional hole. Once I figure out what the emotions are really about, I can get on with my life without quite as much suffering.
Come to think of it, I think that’s why blogging helps me so much. It helps me sort out my emotions — literally — and figure out how I’m truly feeling.
Anyway… I’ve had a heavy week of peopling, and it’s taken a toll. I had a lot of meetings, some of which felt like utter failures, but which were actually okay. Nobody seemed as horrified by my performance as I was. They all seemed to think everything was fine, while I was convinced I was careening towards disaster. I know where the disconnect is happening. My emotions are getting jumbled up, and I don’t have the presence of mind to sort them out, sometimes. I haven’t yet gotten back in good shape from my business trip, last week… and last night, it felt like the whole world was falling down around me. I just wanted to crawl into a hole and leave everything behind. I really wanted everything to just end. My marriage. My job. My mortgage. I wanted to take the money I’ve saved, get in my car, and keep driving till I didn’t recognize anything around me.
Start fresh. Leave all the overwhelming and inescapable responsibilities in my rear-view mirror. Literally. Stop it all. Just stop. And start fresh. Run away! Run away!
I knew I was tired… logically, I knew it. But the whole alexithymia thing was dragging on me (as it often does). I knew I’d had a highly interactive week. And I also knew that I had fallen behind in a lot of my work. But I was really unclear about how I was supposed to feel about that. Was I supposed to be proud of myself for making it through at all, or frustrated with myself for not doing everything I’d intended to? Was I supposed to be depressed because I didn’t live up to my promises, and I’m putting my team and projects at risk? I wasn’t clear about all the stuff I’d actually gotten right — it just felt like everything was wrong. Again, emotional confusion based on my physical state… bone-tired weariness….
And now I can’t find my power cord for my work laptop. That’s unfortunate. I’m working from home today, and I’ll need to plug in. For a while, at least.
Well, I always have my mobile phone to use in a pinch. I can do just about everything I need to do on that device. I’ll just be judicious with how I spend my power. And I’ll order a new power cord from facilities.
Or, I’ll drive to the office and get the cord I have there — no, come to think of it, I’m not doing that.
But I digress. I started out wanting to write about how an autistic life is a rigourous life, by its very nature. In my piece about how the autistic “medical model” makes me sick, I talk about how just because autism can be demanding — even depleting — that doesn’t make it wrong or disordered, in and of itself. It’s demanding, yes. But it also has a whole lot of advantages, and I wouldn’t trade it for the world.
Wanting to “cure” autism, in my mind, is like wanting to cure fair skinned people who live in sunny climates. Should “ginger” folks who burn at the slightest exposure to the sun be forced to expose themselves to sunlight without any skin protection so they can get used to the UV rays. That’s never going to work. We all know that. It’s just going to harm them. Burn them. Make them miserable. Possibly give them cancer, eventually.
Or another analogy: forcing kids who are allergic to nuts to eat peanuts, so they “get used to” them, and refusing to give them a shot to counteract the anaphylactic shock. That makes no sense. No parent in their right mind would do that to a child they love, and countless schools jump through all kinds of hoops to keep allergic kids away from nuts. But they won’t make accommodations for autistic kids who are suffering — often (like me, once upon a time) in silence.
“Exposure therapy” for autistic people is a ridiculous concept. And yet that’s what autistic people are expected to pursue — “suck it up” and just get used to the equivalent of burning sunlight on fair skin… or metaphorically eat a handful of peanuts (with no Epi-pen in sight), to acclimate their bodies to the substances that make them swell up in life-threatening ways.
It’s absolutely pointless. And it’s counter-productive in many ways. Accepting that an autistic life is an exceptional life, which requires greater rigour than the neurotypical mainstream way of life, is — to my mind — core and critical to understanding autism, in the first place. And that acceptance needs to happen on two fronts — 1) with the autistic individual (who probably already knows it), and 2) in the broader world outside, which has a lot to learn about how to A) stop hurting us, and 2) make the most of our talents and abilities.
See, it’s not easy accommodating us. It’s not easy getting accommodations in the first place. In my case, alexithymia keeps me from seeing and sensing clearly what I actually want and need. I literally do not know, at times, just what that is. And then I need to figure out how to express those wants/needs in a way that makes sense to neurotypical folks. It’s not easy. And I often just “bag it” — leave myself and my own wishes/needs out of the equation, so I can live my life more simply. Once I get what I ask for, I then need to navigate using it properly and managing the situation to make sure I’ve gotten it right. Hm. That’s certainly not easy! And I need to give feedback to people about whether I’m all set or not — yet another challenge.
For the rest of the world, it’s even more confusing. They don’t understand how I function, they don’t understand what I need or why I need it. And they often don’t know whether things are working as desired.
Fer-example: People I work with don’t understand why I sequester myself in my cubicle, more often than not. They think I should be socializing with them, chatting for extended periods of time about this, that ‘n’ the other thing. They don’t seem to understand why I wander off when I’m overwhelmed, and they don’t get why I sometimes chase them out of my cube. They don’t understand why I’m not a big fan of going to loud, busy bars after work to socialize and eat food I shouldn’t be eating, surrounded by people who are drinking things I dare not drink. I’ve tried to explain, but it falls on deaf ears. I’m in the minority. My job is to “catch up” with the rest and conform. For the sake of the team.
My boss seems particularly mystified by me, even though I’d bet good money on the chance he’s on the autism spectrum, himself. He’s got a very Aspie-fied approach to understanding people, and social interactions seems to be his #1 area of specialized focus. He makes the effort to include me, to get me involved in things, then he’s confused when I’m not all whoop-dee-doo! about participating in things like business trips to Las Vegas, or wading into receptions and social “mixers” with complete strangers.
The thing is — and this is what I think gets lost in the whole autism accommodations discussion — when I (and others) are provided the different circumstances we need, in order to be at my/our best, the results far, far outweigh the costs, in terms of overall value/expense. There’s a massive “ROI” on letting me (and others like me) function the way that best suits my/our autistic nature.
That’s why the general concept of “accommodations” kind of irritates me. It’s too disability oriented for my taste. It feels like it’s all about managing deficits, preventing meltdowns, and doing the equivalent of replacing all the divots on the golf course, so somebody else can play through without disruption. It feels to me like it’s too much about avoiding disaster, and not enough about making possible the amazing, remarkable, unique results we can provide… if we’re just allowed.
Yes, autistic folks DO have issues with environmental aspects that are best avoided/mitigated. Yes, we DO suffer terribly, when we’re not accommodated and we’re forced to “suck it up” and just power through. The thing is, when we live and operate in a world that is exactly the way we need it to be, amazing things can happen. I’m not just talking about inventions and discoveries and cultural creations that move the human race forward. I’m talking about an extraordinary quality of life and humanity that can emerge to widen the understanding of what it means to be human, what it means to have a soul.
There are plenty of autistic people who don’t seem to have any particular skill or talent that sets them apart from the neurotypical crowd. And those people have value, as well. The ones who have learning difficulties or disabilities. The ones whose IQ scores are lower than expected. The ones whose burning passion is a select class of inanimate objects that most people don’t give a second thought to. And then there are the ones who have no burning passion at all, who don’t know what they’re feeling about anything, who feel no joy or elation, who frankly don’t know why they’re even here. Those autistic people have value, too — in ways that very few people can understand, but still matter. Very much so.
Autism is by its very nature rigourous. And when you accept that, welcome it, even embrace it, you’ve got yourself a pretty interesting life, I have to say. For me, the rigour happens every day. And by the end of it all, I’m wiped. Just done. By the end of a work week, I sometimes don’t even know my own name or recognize myself in the mirror. But I pull myself together and keep going, regardless of whether or not I’m on good terms with my reflection.
Because there is work to do. And I choose to do it.
For today, I won’t withdraw all my savings from the bank, hop in my car, and drive away to leave it all behind. There’s a good chance I won’t do that tomorrow, either. Or the next day or the next day or the next… It’s enough to recognize that that’s what I’d absolutely love to do, because this life-ing stuff isn’t easy. It’s rough-and-tumble, and it hurts like hell, sometimes. But that’s the deal. Joy and pain. Sunshine and rain. It’s all part of it, and yeah, it’s worth the trouble. Every bit of it.
Autistic rigour. I wouldn’t have it any other way.
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Education is all about teaching and learning. Well, it should be all about teaching and learning, however, for all teachers to teach and all learners to learn, it must also be about equality of access. From my perspective, as a member of The Autism Centre, equality of access, through the genuine inclusion of autistic students – which sometimes means adaptation, and sometimes means making reasonable adjustments under the Equality Act – always means that practice should be based on a good understanding – not necessarily of autism per se, but of how autism impacts on the student, within his or her own specific environment, at any given time.
But where is the starting point for all this understanding? What are the building blocks upon which to develop educators’ understanding, which might lead to good teaching and successful learning, and reduce risk of inequality for autistic learners?
Instead of viewing people with ASD as “socially awkward” individuals who need to be “fixed,” we should instead conceptualize them as socially creative. They may not do things the “right” way, but they do them their way.
Note: This piece is about me — and only me — it’s my deeply considered opinion, based on my own personal experience of inhabiting this planet for over half a century. You’re free to believe whatever you like about the true nature of autism. But this is my stance (right now). If you disagree, write a better blog post and tell me about it. 🙂
Lately, I’ve come across a number of bloggers talking about how autism is more than just a “difference” for them. It’s a genuine disability. They suffer from it. They have family members who appear to suffer intensely from it. Autism is the source of tremendous pain and struggle for them and their loved-ones, and there is no way they’re ever going to sanction autism as a “difference”. It’s too disruptive a force in their lives, for that to ever happen.
I also had a brief exchange with someone last week who actively embraces the idea of autism as a disability, and they align themselves with the disability rights movement. They have the best of intentions, I believe, and from a philosophical point of view, I can agree with the value in doing that.
There are a lot of autistic people who are disabled. There’s a whole lot they cannot do, and my never be able to do, because of their issues and traits. I know a handful of autistic folks who wouldn’t last a day in the working world I inhabit. I’ve also known some autistic folks who do extremely well in my work environment, but struggled terribly with other issues. Autism is no joking matter, when things are at their worst. I’ve been through the proverbial “wringer” many times, myself, and I have to continually make conscious choices for or against things, because of the effect I know they’ll have on me.
One day, I can be completely laid out by my issues. The next, those very same issues lift me to sublime heights. If I remove the causes of my pain, I remove the source of so much inspiration. It’s all a matter of degrees with me.
For the record, I don’t consider myself disabled. Yes, autism can be a disabling influence in my life, but its effects are temporary and mutable. It’s like being a sprinter who has to run a marathon, every single day of my life. My routine exhaustion and need to remove myself and recharge (lest I begin to implode from overwhelm and sensory overload) is conceptually no different for me than the results of a strenuous workout. Every day is strenuous for me. I’m constantly testing and pushing myself. Does that make me disabled? I don’t think so. It makes me different in ways that are more demanding than the average person experiences.
Is a thoroughbred racing horse disabled, because it can’t eat the same types of grains as other horses? Because it is so high-strung and hypersensitive that it develops inexplicable white spots on its legs? Is it disabled, because it’s temperamental and prone to outbursts? No. It’s a thoroughbred. It’s a unique and different kind of horse, and when it’s allowed to do what it does best, you’d never ask it to be anything different.
And I come back to it again, is autism itself THE disabling thing?
I’m not so sure. I mean, being autistic predisposes me to overwhelm, hyper-sensitive pain and discomfort, as well as the occasional meltdown/shutdown. Much like having fair skin predisposes you to getting sunburned, if you don’t use sunscreen. In the case of fair skin, the solution is not to change your skin, add more melatonin, or convince yourself the sunburn doesn’t really hurt. It’s to take steps to avoid sunburn.
And that’s where I see the medical model of autism going afoul of my autistic person. According to the medical model, autism itself (or in the above example, fair skin) is the root of the problem, and it needs to be eradicated. It’s a disorder. It’s a dysfunction. It’s an aberration that — for the sake of smoother functioning of society — needs to be changed in some way, if not gotten rid of entirely.
Classifying autism as a diagnosable disorder (and I’ll freely admit, the idea of diagnosis appeals to me, not because of the medical overtones, but because of the science — Science! – cue Thomas Dolby) makes it a “thing” that needs to be fixed, that needs to be addressed. It removes it from me, as a person, and turns it into the cognitive-behavioral equivalent of a tumor, a mass, a growth of some kind. Maybe the “mass” is benign, for the most part. Maybe it just causes occasional discomfort. Or maybe it impinges on nerves and causes me unspeakable pain. In any case, it’s something separate and apart from me that arises from a physical cause and is addressed as a distinct (but disposable) aspect of my life experience. According to modern medicine, this condition, this disorder can (and should) be treated.
The thing is, it’s all more complicated than that. Yes, my body is differently “tuned”. Yes, there are experiences that others take for granted, which are unbearable to me. Yes, there are many aspects of my life which are physiologically uncomfortable, even painful, and depending on my state of body and mind, those aspects may be more or less extreme. But is a physical/medical approach the one and only approach I should take, when it comes to managing my situation?
Is changing the essential makeup of fair skin the only way to avoid sunburn?
Obviously (to me, anyway), there’s more to it. There should be more to it. Because what parts of life are ever that simple? Few, if any.
There’s the whole environmental thing. And the whole social thing. And the whole accommodations thing. And the whole pro-active self-care thing. There’s me taking care of myself, and there’s having other people to help watch out for me. There’s my diet, there’s my exercise, there’s my social circle (or lack thereof). There’s my inner state, my outer circumstances, my interactions with the world around me… That all comes into play in an intricately interconnected dance, so that I cannot possibly ascribe to only the medical model as a way to explain and address my autistic experience(s).
It’s all very well and good to seek physiological explanations for why things are like they are with me. I tend to turn to biochemistry and neurobiology for explanations about why people behave like they do, and in some cases, they offer greater clarity. Certainly more quantifiable data.
But to look at those quantifiable data in and of themselves, with no connection to the outside world and the artificially created circumstances… that’s just asking for trouble.
Because then the problem originates in my system. It says there’s something wrong with ME, my physiology, my own personal context. It seems to absolve the outside world of any kind of credit or culpability and treats my system as a self-contained, hermetically sealed entity that has a mind of its own and does what it pleases… just ’cause it feels like messing with me.
To overlook the effects of environment, as well as human-made complications and challenges, does my physiology a disservice. It makes it sick. It makes ME sick. It makes us out to be disordered, in and of ourselves, rather than in relation to hostile circumstances.
Expecting me to just motor through life, carefree and happy-go-lucky, regardless of extenuating conditions is like, well, expecting a fair-skinned individual to walk across the Kalahari Desert without any cover-up or sunscreen, and not be sunburned. It’s like running a thoroughbred hard, putting them up wet, and then repeating the process again the next day — or that very same afternoon — and doing it again. And again.
So, that’s my “take” on the medical model, as it applies to me. I’m sure I’ve missed some important nuances, and I am probably over-simplifying things, here and there. Or maybe I haven’t, and I’m spot on, all across the board.
Bottom line: the medical model may work for some things. But my autistic nature and experience? Nope. Doesn’t do the job on its own.
And I’m sick and tired of being treated like I’m sick and it’s all my (and my autism’s) fault.
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Masking of autistic traits and behaviors is common among women and men on the spectrum. Your stereotypical autistic boy, who doesn’t make eye contact and sits in the corner playing with trucks, is not the only type of autistic person in the world.
A lot of us mask how our traits and our difficulties, hiding the truth of our experience from others, often to our own detriment.
So, why do we do it?
For me, one of the big reasons that I mask is to avoid the pain of others’negative reactions. Autistic folks can be so extremely sensitive to others’ reactions, and that’s especially true of negative reactions. It’s almost like someone else’s discomfort gets amplified 1000 times, L\like feedback between two loudspeakers, to the point where it’s absolutely unbearable.
Neurotypical reactions to autistic behavior are seldom comfortable or accepting, let alone celebratory, hitting me hard – like a punch in the gut – and amplifying as time goes on. Just like those proverbial loudspeakers facing each other with the vibrations and frequencies amplifying to earsplitting level, other people’s reactions to my stimming, lack of eye contact, repetitive movements, and holding forth on my favorite subjects, are physically painful for me.
So, I protect myself by masking. I just don’t show people what is going on with me, I don’t let on that I need help, and I don’t let anyone know what is really happening with me.
The net result is that I look great on the outside, and inside I feel like I’m dying. This happens numerous times each day, to the point where I hardly even notice it anymore.
No, I don’t let anyone know that I’m confused, that I’m frightened, that I lost the train of thought of our discussion about 20 minutes ago, and I’m literally just guessing at what I need to do next. As a result, I look great on the outside, and inside I feel like I’m dying. This happens numerous times each day, to the point where I hardly even notice it anymore. But when I think about it, it nearly brings me to tears.
We were supposed to have an awful, terrible winter storm yesterday. It was supposed to shut everything down for two days in the area where I live. Driving home from my parents’ place in Pennsylvania on Monday, we passed one sign after another on the highway warning about blizzard conditions for both Tuesday and Wednesday.
Well, it’s Wednesday, And it’s a bright sunny day, with beautiful blue sky and white puffy clouds floating around. There’s snow on the roads in places – especially on the back roads – and the sides of Main Street are piled high with plowed snow. But in terms of Snowmageddon, this was pretty much a non-starter. If anything, it was just another winter storm like many we see in New England. In fact, it was one of the less dramatic ones.
We’ve had storms in the past that dumped 27 inches on us in the space of a day. We’ve also had years where one storm after another dumped several feet of snow on us, day after day, and the snow was so high, I couldn’t see many of the big rocks in my backyard. I know we’ve had a lot of snow, when my backyard is a flat white surface. That rarely happened this year, and it certainly didn’t happen after Winter Storm Stella yesterday.
All of the drama and all of the anxiety about Stella reminds me of the drama and the crisis that often gets spun up around autism. I just spent four days with people who are very spectrum-y, and not once did I feel like there was something wrong with me when I didn’t make eye contact, or I stimmed, or I flapped my hands. This was true both inside my parents’ house and outside. My quirky nature has always been seen as just who I am in the place where I grew up. That doesn’t mean it was easy growing up there, but it does mean that all of my characteristics which the mainstream considers dysfunctional are simply considered attributes of my personality, which needed to be adjusted or mitigated or managed in some creative ways, to make it possible for me to interact effectively with my family and the larger community.
It seems to me, that the drama around autism is roughly akin to the drama the people in southern states feel when they get 6 inches of snow. All hell breaks loose, everything grinds to a stop, and the regular flow of life is completely disrupted. For those families who are not comfortable with the characteristics of autism, or who have different standards of behavior and being, I would imagine having a child who does not conform, does not comply, and seems to ostensibly have no capacity for doing so, would be roughly the equivalent of living in a tropical climate and getting 6 inches of snow in a day’s time.
For those of us who are familiar with heavy snow storms, we take a 27 inch storm in stride, and to have the equipment and the attitude and the skills to handle heavy snow falls, it’s really no big deal. Likewise, when you understand the rigors that accompany autism, and you can read the signs, you can adapt, and you adjust accordingly. It’s not at all a horrible epidemic pox that brands you and your family as rejects for all time.
That all being said, with autism awareness month is right around the corner, it seems like everyone is gearing up for yet another version of winter storm Stella. For those of us who know how to handle these things, it’s not always that big of a deal. Of course, it’s not easy, sometimes it’s damned hard, and it takes concerted work, just like clearing 1.2 metric tons of snowfall from your long driveway. But it can be handled. We can deal with this. It’s not the sort of thing that happens every single day to every single person, and we all handle ourselves with greater or less or degree is a facility, but still, it needn’t be a catastrophe, when it does show up.
As for me, today I am enjoying the snow. I am enjoying the last throes of winter. I am really enjoying the fierce cold snap, which makes my internal thermostat kick in and warm up, and I know from experience that whatever Mother Nature sends my way – whether in the form of snow or my autistic tendencies – I can deal with it. It’ll take some work, and it will take some doing, but it can be done.
I consider autism itself to be a distinct neurotype, which has been very well-concealed over the aeons, because societies in the past provided ways for all members of a community to contribute according to pre-set guidelines. As we have seen those “exoskeletons” of social conventions dissolve, our “endoskeletons” of individual identity – our strengths and weaknesses, our diagnosed conditions and disorders – have become increasingly pronounced, to replace the social exoskeletons of customs and conventions which used to define where our relative strengths and weaknesses lay.
Of course, within the context of considering autism a distinct and commonly occurring neurotype (rather than anomalous disorder), the question comes up about what purposes the DSM-V actually serves. That manual of diagnostic conventions, so useful when it comes to insurance billing and so revered when it comes to identifying issues that need to be addressed, effectively pathologizes autism as a disorder, rather than identifying it as a specific aspect of the human condition.
Of course, getting rid of the DSM and or removing autism from its listing, has a slim-to-none chance of happening. But if we’re stuck with it (for the time being – after all, homosexuality was eventually stricken from that record) might there not be another practical use for that manual? Might it not actually come in handy in certain ways?
From where I’m sitting, on this bright snowy morning, 40 miles west of Boston, Massachusetts, it seems to me that the DSM and the degree to which artistic people “meet the criteria” can actually help to determine where society itself is breaking down in regards to its treatment of its autistic members.
If we consider that problematic behavior is actually a symptom of individual distress in the face of essentially mutable conditions, rather than a sign of permanent personal dysfunction, we can measure the degree of the different criteria and how they occur in an individual to identify where the community at large is failing them.
If extreme sensitivities are noted, that could indicate a heightened degree of environmental stress, whether from noxious scents, chemical excess, or extreme social pressure that is completely inappropriate for that individual’s personality and innate tendencies.
If repetitive or stereotypical behavior is noted, it could also indicate heightened degrees of stress, which require some sort of adaptive or relief-oriented behavior (stimming), to offset the impact.
If lack of eye contact is noted, that can actually indicate hyperfunctionality in terms of processing information, where the individual is actually focusing intently on the subject at hand, rather than engaging in the social back-and-forth of eye contact, expressly so that they can reply effectively and appropriately. The more eye contact is noted as a deficit, the more it’s an indicator of needed training by the person who’s complaining about that behavior. They need to be educated about what goes on when we are not looking them in the eye, and their anxiety around that behavior (which keeps them from dealing effectively with us) needs to be dealt with.
That is to say, they need to deal with it, not put the onus of that effort on us.
All in all, I think that autism shows up much less as a disorder, when you’re in the company of like-minded people with comparable neurotypes. Within the company of your autism spectrum peers, you’re not going to be considered dysfunctional or disordered – unless your behavior wanders into the fringes and disrupts community interactions and cohesiveness.
All in all, I think that including autism in the DSM-V is problematic, but since it’s already there, and since there is almost no chance of it actually being removed in the near future, we might as well make use of that.
It may be grasping at proverbial straws… but until things change for the better, and autistic people are relieved of the stigma and drama around the official definitions of “autism”, we might just be able to wring somebenefit from that sodden rag of medically induced hubris, after all.