The UK’s Channel 4 is currently promoting its upcoming series ‘How autistic are you?’.The blurb asks if you “think you might be autistic?” as a precursor to a whistle-stop tour of reasons you might indeed be autistic:
“Struggle with social interaction, maintaining eye contact, or understanding the expressions and gestures of those around you? Do you have difficulty understanding other people’s feelings and managing your own? Or perhaps bright, loud or crowded places make you anxious?”
This isn’t helpful.
When free to create our own spaces for social interaction we form strong bonds and lasting relationships.
I have heard of too many children and adults refused assessment or diagnosis because they can do eye contact.
We are empathetic of others, we just might need them to communicate in a way we understand.
We often know exactly what to do to manage our own feelings, it’s just that external expectations…
Some folks love weighted blankets. I’m a fan of lying under heavy-heavy blankets, myself. And I look forward to the summer, when I can have my air conditioner on full-blast and cover myself with lots of layers. It helps me sleep. Ironically, I can’t do it in the winter, because the heat is up in the house, and I have to use fewer blankets. I just can’t bring myself to run the A/C in wintertime. There’s something very wrong about that idea, in my head.
Some folks love the feel of a firm squeeze. Temple Grandin, for one. Plenty of others, too. Getting a monster hug does some autistic folks a lot of good. Me? I’m on the fence about it.
The pressure I prefer is of the existential type. Having more to do, than I have time for. Having higher expectations of myself than are realistic. Demanding more of myself, than most “reasonable” people would even think to require. Setting impossibly high standards for myself, then pushing myself to live up to it — regardless of my apparent abilities or human capabilities.
I put all kinds of pressure on myself on a regular basis. And it does me good. Most people get a little concerned, when they hear about everything I’ve got going on — which is why I don’t tell many people about everything I’ve got “cookin’ on the back burners” of my proverbial mental cooker. I don’t tell most folks about all the activities I’m involved in — volunteer activities, town government meetings, multiple creative ventures, a variety of in-depth studies that have been going on for decades, a handful of blogs, a whole lot of web domains I manage, various stuff I help others with, events I help produce, and so on.
Yeah, it’s a lot. Looking at it all laid out in linear fashion, it looks huge. But when you overlay everything with everything else, in 3D (or 4D/5D), it all fits nicely. A neatly packed, snug package that is my life.
It’s all so much a part of me, so much a part of my life and my daily flow, I just don’t know what I’d do without all those activities. I pick up one thing, and I love it. Then I pick up something else, and I love that, too. Why not do them both? Why indeed? So, I do. And a few years go by, and I pick up something else. And do that, too. I don’t drop the other things… just keep going with what I’ve already got. And it adds. It builds. The pressure mounts.
Which is how I like it. I swim in such a vast sea of sensory inputs — physical, emotional, mental, psychic — that if I didn’t have a Specific Point Of Focus in my life, I’d spin out. Seriously, I’d lose my coherence, and I’d lose my cool.
All the world is a blur for me, if I’m not focused on a specific point(s) in my life. A specific goal. An intended outcome. It doesn’t matter if that outcome is impossibly out-of-reach. I have to make the jump. I have to push myself. I have to extend myself. I have to leap into the gap, to see if I’ll make it.
Sometimes I don’t. Sometimes I fall short. I often do, in fact. And I’ve learned to come to terms with my shortcomings, my short-falls. Because they’re the inevitable outcome of so many of my over-reaches. The over-reaches that save me. That make life worth living for me. The pressure that thins the thicket of static that’s always around me, no matter what.
I’d never want to get rid of the static. I’d never want to leave the thicket. Many people have encouraged me to “relax” and “not rush”. Okay, okay. Fine. I’ll pretend to not push myself. I’ll pretend to not care with all my body and mind and heart and soul, whether or not things go exactly the way I want them to. I do a great impression of that, even while on the inside I’m pushing and pulling and fretting and vexing myself over every single detail. I need that push-pull-fret-vex mix. It keeps me focused. It keeps me steady.
The times when I am most unsettled, are when I can’t get that pressure. When I’m just settling in for an even-keeled haul, pacing myself, chilling out. Those times, like when I’m just hanging out with my partner, talking about the day, relaxing and keeping “my energy” mellow for her sake, before long, I feel like I’m coming out of my skin. Because I’m open. To everything. Every last little stimulus, every last little piece o’ static that’s flying by. Like dust floating by one of those electrical air cleaners that attracts all the particulates to its surface, and it has to be washed off on a regular basis. That’s the stuff you’d normally be breathing in. Oh, for heaven’s sake… Ick. Disgusting.
That’s me — an electrical environmental cleaner, attracting every piece of floating ambient minutiae to my system, till it gets glommed up with all the static. All the detritus. All the emotional “off-gassing” from my surroundings.
People just do NOT take very good care of their emotional health, lemme tell you.
And I pick up on it all. Unfortunately. Especially from those close to me — like my family. Like my partner. Like the people I work with. They love having me around them, because I clean their environment. I pick up on all their static, glom it onto my system, and they feel so much better when I’m done interacting with them.
Never mind how I feel. That’s not part of their equation. Because they aren’t aware of what an emotional trash fire their lives are, anyway.
Yeah, it builds up. And unless I can get my Daily Dose of pressure to block it all out, it blocks me up.
That’s where intense exercise comes in. If I don’t physically push myself, first thing in the morning, every single day, I pay for it. By noon, I’m an emotional wreck.
That’s where overloading my daily schedule comes in. If I have too much time and energy on my hands, I start to notice things that have nothing to do with me, but I pick up, regardless.
That’s where the unrealistic expectations and over-ambitious undertakings have their greatest value. It focuses me — fanatically — on my Primary Purpose. It lets me build fantastic castles in my mind, looking towards an amazingly glorious set of achievements that only I know about, that only I will ever fully appreciate, and which nobody else in their right mind would even entertain pursuing.
In blocking out everything that has Nothing To Do With My Own Ambitions And Goals, I cut down on the energy I have available to spare on other people’s superfluous “stuff”. I get to focus my attention on myself, instead of being drawn into everyone else’s self-created dramas that are there for entertainment purposes, only. I get to Live, not die the slow death of imagined dramas, slights, insults, barriers that everybody else seems to prize and live on, as though they were oxygen itself.
That slow death is its own sort of pressure, I suppose. People need it. They crave it. It jacks up their adrenaline and helps them block out the distractions of life. It pumps them up and makes them feel more alert. And I can understand that. The thing is, those dramas, slights, insults, and barriers are theirs, not mine. They have nothing to do with me, and I can’t be dragged down into them. I’m too busy getting my own dose of pressure — the never-ending squeeze of pushing a wider vision of life through the narrow gap of what everybody else thinks is possible.
Give me my pressure. Give me my possibilities. Life is waiting. And I haven’t got time for the static.
This post was inspired by Rhi’s lovely post “An Autistic Anniversary“. While reading it, my brain saw a butterfly and chased after it, like my brain tends to do.
Brains these days.
I fully realize that it’s been a year since my Asperger’s/autism spectrum discovery. And while I fully realize that, I guess I haven’t fully processed it. Every time I think I have, some new revelation emerges from the trees. Or the wind. Or the mountainous hills of which I live on the edge, in more ways than one.
Which means I’m still processing, which for me, involves reframing.
I realize that some might be saying, “good lord, girl, enough already!”
And after a year, they’re probably within their rights to say such a thing. Or maybe they don’t have that right, and could only earn that right if they could climb inside my head and hang…
Now, it’s time to get back to my routine, g*ddammit.
Seriously. It really, really is.
I had such great plans for April. I was going to “kick it” on my writing and reading, make some inroads in my posting, finalize my memoir, and lay a solid foundation for Auptima Press, my new venture with Toni Boucher (and a few other contributors). I was going to launch myself into a dedicated exploration of autism in my own life, peering into nooks and crannies where there’s still so much to be learned. I was going to regiment myself carefully, budget my time and energy, and really crank out some quality work, borne of careful consideration and all the motivation a member of a marginalized group can muster during a month dedicated to raising awareness about their “plight” (Oh, we poor dears… 😉
But then… life.
Illness. Industrial-strength. Live-and-death-grade medical condition. End-of-life conversations. Advance directives and living wills and powers of attorney, oh my.
And then… death.
The loss of my obviously autistic aunt — the woman who never, ever would have been missed or mis-diagnosed, had they known then, what they know now. Even in our still-developing state of under-awareness, she never would have slipped through the cracks. Not like she did, when she was a little girl. Nope. Not a chance. Her passing hit me hard. Much harder than I expected. I’m still not fully recovered, to be honest.
And now… life again.
Lots of it. Return to an over-full, busy schedule, a mad dash towards a series of shifting-target goals at work, as well as at home. I have obligations. More obligations than I’d like, but enough to let me know that I am — indeed — a valued part of the community. And that’s fine. That’s all very nice.
But I just need my routine again.
I’m peevish and irritable. I’m still recovering from poison ivy that’s not terribly itchy or painful, but gums up my routine, because I have to apply cream… and then the cream makes my hands feel weird, which I hate. I need to feel things with my hands — dry and firm and un-slippery. And that hasn’t been possible, what with all the lotions and potions I’ve been applying. Not to mention the weird ways that absorbing corticosteroids and Benadryl (even in a topical cream) have been screwing up my sensory processing.
Augh! I need a break.
But for me, a break isn’t just about checking out of the day-to-day. Far from it. For me, a break involves going back to my standard routine and being able to follow it to a “T”.
Get up when I’m no longer tired — around 6:00 a.m. or so.
Ride my exercise bike while I listen to electronica music and check in with Twitter, followed by some light weight lifting.
Fix my breakfast and eat it in peace, taking my vitamins 2/3 of the way through.
Sitting down to read and write and blog and check email and center myself for the day.
Get ready for work — and NOT have to decide what to wear, because I’m back to my usual weekly “uniform” of certain clothes on certain days.
Drive to work at a steady pace, after rush hour is over, and the traffic is more civilized.
Work my day through, getting in a 30-minute swim, around 3 p.m.
Head for home around 6:15, stopping to shop for supper on the way home.
Put supper on the stove to cook/stew, while I sit down to read/write some more.
Chat with my partner about her day.
Go to bed. Do some yoga poses, then lie there for a few minutes, till sleep comes.
And then do it all over again.
Is it so terrible, to want this exact same sequence to happen, day in and day out? I think not. Is it so much to ask, that I have this same routine, each and every workday? I can’t see why it should be.
I don’t want to stop the routine. I want to get back to it. That’s my “break”. That’s my relief. Knowing that my life is on track, and I’m making progress in meaningful ways. That’s what matters most to me.
And slowly but surely, it’s getting back to that… though none too soon.
“Ah, the actress,” the psychic said. “Yes, I am an actress,” I replied. “Oh, no,” she corrected. “You’re a writer. But you’re an actress in your day-to-day life. Always performing. No one really knows who you are. Not yet, anyway.”
Eight years ago, at the time of that reading, I didn’t know I was autistic. I had no idea that the way I experienced life was different from the way others did. Nor was I aware that, in order to cope, I had become exceptionally skilled at playing the role of someone else – to the point that I had even fooled myself.
I am writing this at half seven in the evening of what has been a fairly productive Monday. I was unsure when I woke up just how productive I would be able to be today because once again I am coming down from an overload. This particular overload lasted two full days; two days where I was unable to do anything, hardly even watch TV. I want to use this blog to talk a bit about why I was overloaded, and how getting this overload each time I go out to try and do something outside of my routine makes me feel.
So what brought on this two day overload? As you may or may not know – depending on when this blog goes up, and how closely you follow my blog – I went to an autism-friendly Mayoral Hustings on Thursday of last week organised by the Greater Manchester…
Rather than the body being
collateral damage in
this process of awakening,
it is instrumental.
The biggest shift in the entire
process of Waking Up to the
new reality is realizing
the body is the vector
for enlightenment. It is
literally the delivery mechanism
by which we experience
the vastness of
who we really are.
I’m not sure why more isn’t discussed about the physical autistic experience. Maybe it’s because the folks getting funding aren’t aware of how big a role our physiology plays in shaping our psychology. Maybe they don’t know how much their own bodies affect their thinking.
Maybe their creed prohibits them from admitting it, and they take as gospel the disavowal of the body for the sake of the soul — never asking, never plumbing, never peeking beneath, what the source, the root, the base of that rejection might be:
The kind of pain-discomfort-overwhelm that overrides the will, that injects the sudden need to think something – do something – imagine something – block something into the process of living, even before conscious thought has a chance to form.
The kind of unsettlement that blocks the awkward thought even before it has a chance to register, which protects us from our own silent suffering with a blanket of unawareness. Distraction. Something Else to think about that has Nothing To Do with what’s happening now. Right now. In the body. In the system. In the vessel, the container, the vehicle for our daily lives.
Autism is like that — at least, for me. It’s a never-ending stream of impressions and sensations and clues and cues that my body cannot ignore. And it doesn’t want to. Waves … Yes. Waves. That. Those. The continuous connection to All That Is, in every conceivable way — especially those that have nothing to do with what the average block-of-wood body walking around freely admit exist… numbed and succumbed as they are, in the ways they can tolerate.
I am not like them. I am not like most people. 67 other people, for every one of me. IF the numbers can be trusted, which I’m not sure they can.
I am not the sort of person who can block all that out, or pretend it doesn’t exist. I’m not the kind of human who can ignore the signals I pick up — even if I wanted to, my body is tuned to them, attuned to them, always able to sense and decode and interpret and then pick up some more again… a never-ending stream of electrical impulses running through my system — body and brain — shaping me, connecting me, affecting me.
It doesn’t stop.
It never stops.
Even when I sleep.
If you wish to plumb the depths of the autistic brain, look to the autistic body. Consider the effects of traumas — large and small, starting from the very moment we begin to become aware. Consider the effects of stress — of every ilk, including the “stuff that shouldn’t matter”. Because it does. It most certainly does. To those of us who cannot block it out — who tried, for years and years with drugs and alcohol and all-consuming passions and self-abnegation… and now (once we’ve acclimated and discovered Better Ways to modulate it all) wouldn’t, even if we were given the chance.
The autistic brain starts with an autistic body.
Before the mouth says strings of words that make coherent sentences.
After the mind learns how strings of words made into sentences — whether spoken or read — can soothe the burn of the Surround.
Before the expectations of Everyone Else are decipherable as express demands, they register with us as wordless wants.
After the Tyranny of the Collective makes itself known as that indecipherable amalgamation of arbitrary caprices, all of which have thorns that prevent us from grasping — at-tall — they pre-register with us as a looming storm cloud flashing with electric threats — will that pinpointed fork of searing failure strike close or far? will it strike us at all? or can we obliquely slide on past with pre-rehearsed stock answers to questions we barely hear and cannot interpret before the askers need our Reponse?
The brain, the body — both work so tightly in concert with one another, it’s impossible to separate them. Not for us. Not for anybody. But for autistics, it’s inescapable. We’re wired. We’re connected. Within. Without. To ourselves. To everyone and everything else, God Help Us.
Seriously, neurotypical world, you’re a mess. Clean up your act. Why do you think we’re so autistic? Because we have to deal with your trashy, unkempt psycho-emotional lives, the trashed-out world you force us to live in, the detritus of your egos, the flotsam and jetsam of your latest attacks on whoever appears to be floating by your panic-stricken hair trigger lust for destruction.
You’ve declared war on your own bodies, and consequently, ours. And the results… well, just look at them. You don’t much like them. But rather than addressing the issues you’ve caused — pollution, destruction, malnutrition, indentured servitude at every level of society — oh, no — you’d rather “cure” us. Eradicate us. Send us off to be electroshocked, or ply us with junk food till we comply with your selfish, self-centered, self-delusional versions of “what should be”.
That shouldn’t be.
Nor should we be subject to your whims and wishes. You’re a trash fire, you neurotypical head-cases. Cutting yourselves off from your bodies, cutting yourselves off from the natural world, cutting yourselves off at the neck, and pretending nothing exists below.
. . .
Ah, never mind… what is… well, that is. That rant is just the corticosteroids talking. I’ve been on a topical application for poison ivy for two days, and I’m experiencing an interesting mutation of “roid rage”. I’ll stop now. Take a breath. Remember, that’s my body amping up my mind.
. . .
Where was I?
Oh, yes — autistic bodies, autistic brains.
Long story short — the foolishness about how autism is All About The Brain needs to stop. The hallmark of our essence is an all-pervasive connectedness with everything. Everything, I tell you. You cannot separate the autistic brain from the autistic body, and you cannot solve the mysteries of our being, unless you look at our physiological state — first and foremost. The body, its pre-conscious, anticipatory, protective instincts are what compel and propel many of us in our own unique ways. And until you wrap your heads around that, you’re never going to “get” us. Nor will you accept us. Nor will you accept yourselves.
Autistic bodies — autistic minds.
Come to terms with us and our reality, and you might just learn a thing or two about yourselves
I nearly disclosed my fairly recently officially confirmed autism to my family, last week, while I was with them. We were discussing my nephew and the ongoing challenges real struggles he’s faced, making the transition from high school and living at home to landing in a vast academic jungle of an Ivy League university in the crowded northeastern US. I stressed that he really is a “textbook case” of Aspergers, and if he can just get a clear understanding of his issues, he stands a much better chance of managing them. And getting his life back.
While I was making the case, I didn’t say “when he understands”, I said “when we understand”. Or something like that. Something not only about him, but about US. Because I swear to God, he is One Of Us.
How could he not be? Impossible, I say. Impossible.
But the conversation was cut short. I had to start towards home, on my 9-hour drive across several states, from one major region to the next. Across mountains and valleys and rivers and streams, long stretches of highway flanked by ravines with beaver dams and lodges in the swampy bottoms. I had to go. I had to conserve my energy. And anyway, my family didn’t want to discuss it. They barely acknowledged it. Said, “Oh, I’m pretty sure I’m dyslexic.” Or “I’ve got ADHD.” Or ” — ” silence. Crickets would have been louder.
So, I let it go. I got in my car. Jumped out again and gave them all one more round of hugs to make up for the quick embraces I pulled away from so self-consciously just minutes before. Then headed up the road. Till I got home.
I’ve been home for nearly a week, now, and I’m still not “all here”. I haven’t been able to type very well. The words get turned around, the letters get jumbled. And all the while, I feel like I’m coming out of my skin. Being back in this cubicle, having these work conversations about work subjects with work colleagues… it all feels so strange to me, so distant, so peculiar.
Of course, it doesn’t help that I’ve been on meds for poison ivy that really knocked me out. Benadryl does that. And now I’m using a topical steroid creme that’s absorbed into my system, even if I’m not eating it. I can’t take steroids of any kind. Prednisone turns me into someone I don’t recognize, and it’s rarely a positive development. Dr. Jekyl / Mr. Hyde. I’m sensitive. What can I say?
Anyway, since returning from my aunt’s funeral, I’ve been noticing an awful lot of things. I’m tired. I’m taxed. My system is overloaded on many fronts. And that makes me even more sensitive than usual. It’s a recursive, self-referencing sort of noticing, too — I don’t just notice more things. I notice that I notice more things. And more things. And more things about more things.
I notice how much I’m bothered by all the noise and light in the cafeteria at work when I’m standing in line for my food.
I notice how clumsy I am – so clumsy that my soup spills all over my desk, and I need to go back — yet again — to stand in line to get something that (this time) won’t spill, if I drop it.
I notice how I start to twitch and shake, as I stand before the counter, all the fluorescent lights over and around me blinding me — hold still, hold still, stop twitching and jerking… just look at your phone — and the deafening roar of overhead exhaust fans causing me to withdraw, slow down, abandon words — tell the deli woman your order in a loud, clear voice, and hold onto the counter so you don’t tip over…
… the way I wobble as I make my way across the teeming room to the line of cash registers — steady, steady, keep your gaze locked on the sign hung on the wall — the way my ears betray me, so I can’t understand what anyone is saying to me — just pull out the slip that has the order written on it, so the cashier can wring up the order —
… the way my fingers fumble and falter as I pull out my ATM card to pay for my sandwich — did she notice? No, I don’t think so. I think I’m fine. I’m fine. I’m really fine. Now go — Head for the door and get upstairs to your cubicle where you can sit down and eat something.
Steady… steady as I go.
I notice this. I notice it all. Usually, I’m so rote-inized (think routinized without thought involved) and my movements are mechanical, automatic, so I can shut off my senses and just motor through without too much disruption.
Not today, though. I’ve been away…. out of this routine… out of this element. Suddenly (after such a short period of time) everything seems strange and unfamiliar and faintly threatening. Unsettling. Like I’ve stumbled and fallen through the veils that usually hang between me and the world in which I live and move and make my daily wages… reaching out to clutch at them as I fall… I pull a few of them down. Rent. Spent. And they can’t be hung up again.
Not right now. Not till the drugs get out of my system… which could take days, if not weeks. Yep, this is gonna take a while.
At the same time, this unsettlement is nothing new. It happens sometimes. It’s happened lots of times before, and it will probably happen again.
There’s no sense in getting worked up over it, losing my cool over it. I just need to keep up on my sleep and remember this is what happens, sometimes. Just hang in there and keep steady, as the input keeps washing over me, setting me off-balance, sending me careening in all directions, spilling soup, making a mess, turning my head around and making me woozy and wobbly. I just need to be extra careful about things I do, and how I do them…
Take care. And don’t get thrown off by everything I notice.
Hi I'm Mike. I am 27 and I was diagnosed with "high functioning" autism as an adult at age 25. I live for music, nature, and technology. I'm still trying to figure out what it means to be autistic. This is my story.