1. Surfacing – Part 3

An excerpt from the book I’ve been working on – tentatively entitled Countdown to a Meltdown. Trigger warning for in-depth descriptions of sensory issues & balance issues, as well as a little bit of interpersonal conflict.

Stepping into on my slippers, I shuffle slowly to the bathroom. My bladder is over-full this morning, which frustrates me as the urine drains from its holding place in my body. Even sitting on the commode, I suddenly become lightheaded and reach out to the sink counter beside me for stability. Focusing my gaze on the lines of the shower tile in front of me… holding my gaze absolutely still… steadies me, and I focus on the straight lines till my bladder is empty. Flowers and lattice-like lines jump out at me from the shower curtain, and pull my gaze away from them, concentrating on the straight horizontal lines of the tile. The floral pattern is too uneven for me, the folds of the fabric are too wavy, the colors are too variable. And I can’t keep them all from intruding on my gaze, so I get off the commode as quickly as I can, balancing myself on the vanity surface as I rise and pivot.

Washing my hands, I relish the feel of warm water running over my skin. It soothes and comforts me, as flowing water often does. But the sound of the water rushing out of the spout is too loud. I adjust the spigot to slow the flow, and let the warmth run over my hands. I “zone out” for a few minutes, feeling more balanced as I lean against the edge of the sink counter. Then I remember where I am and what I’m doing, and I turn off the water and dry my hands on the hand towel to my right.

As comforting as the warm water was, having wet hands afterwards agitates me. I dry them thoroughly, almost obsessively. I cannot tolerate the feel of dampness on otherwise dry skin – especially my hands. I have never been able to tolerate damp sleeves. It distracts me terribly and pulls my attention away from keeping my balance, making me nauseous and irritable. I push the sleeves of my sweatshirt farther up my arms and dry my skin as completely as possible, working my way across the hand towel, in search of drier fabric. The towel is scratchy but dry, and I make sure I have every last bit of moisture off my hands before I brush my teeth. I have to be able to hold the toothbrush. And I can’t do that with wet hands.

Brushing my teeth after I’ve dried my hands bothers me a bit – more water splashing on my skin and coordinating my toothbrush motions distracts me from keeping my balance, and I have to steady myself on the edge of the sink counter. With one hand firmly planted on the level vanity surface, I’m able to immerse myself in the motion of my toothbrush and focus on the feel of the bristles on my teeth. When I was a kid, brushing my teeth used to drive me crazy. The loudness of the scrubbing would echo thunderously in my sensitive ears and all but deafen me. This morning, my ears are sensitive. Very. The thunderous sound of the bristles on my teeth is almost painful. I concentrate on the taste of the toothpaste, though, and run my tongue over the surface of my clean teeth to get my mind off it. I have to brush my teeth; that’s not up for discussion. I want to keep my teeth healthy. I want to keep my teeth. So, I just buckle down and deal with it.

When I’m finally finished, I run my tongue over the surfaces of my teeth to make sure they feel clean. I generally floss in the evenings (as well as during the course of the day, as needed), so I don’t need to concern myself with flossing when I brush, first thing in the morning. And a good thing, too. I’m so off-balance, the very thought of pulling floss from the container, wrapping it around my fingers and working my way across all my teeth makes me a little sick to my stomach. My attention to detail last night pays off today – I don’t need to floss. I did well, the night before. And that helps take the edge off my agitation this morning. As I rinse and spit for the last time and rinse the toothpaste from the edges of the sink, I feel a little more centered.

But something is wrong. I realize that my hands and wrists are wet again, and a sudden rush of irritation courses through me. I reach for the hand towel and try to dry off, but it’s damp from when I washed up before. Agitation and frustration courses through me, and I pat the towel, looking for a dry spot. But I was so thorough before, I used up all the dry areas of the hand towel.

I need to get them completely dry. Wet hands don’t let me felt the world around me. They make my grip slippery. The water wrinkles my skin, which makes it difficult to feel things. I feel my way through my life, although I’m not overtly hyper-tactile. I soothe myself with the feel of my hands and fingers rubbing themselves… fabric… rough tissues… spongy objects. When my hands are wet (or even damp), I feel off-centered and anxious. So, I have to get them dry. I have to. Now.

Turning slightly, I find my bath towel hanging nearby, and I rub furiously at my hands and wrists, anxious to be dried off. I’m irritated that I’m using my bath towel for a hand towel. That’s not the right way to do things, and then my bath towel will be wet when I use it later.

But I have to get my hands dry.

Already this day testing me, and I haven’t even made it off the second floor.

I desperately need some coffee.

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1. Surfacing – Part 2

An excerpt from the book I’ve been working on – tentatively entitled Countdown to a Meltdown. Trigger warning for in-depth descriptions of sensory issues & balance issues, as well as a little bit of interpersonal conflict.

For many people, 5:00 is the perfect time to get up. It’s quiet. The rest of the world is still sleeping. Being up at 5:00 gives them plenty of time to get ready for work and head into the office by 7:00, and get a running start on the day. Many of my coworkers start early and end their day early. They work from 7:00 till 3:30 – and they take a whole hour for lunch. They have kids to get to school and care for. Their lives require them to be early birds.

I, on the other hand, have no children, and I prefer to work a later schedule. I generally get in around 9:30, so I miss the heaviest commute traffic, and then I work I work till 6:00 p.m. or so. Or I don’t take lunch and get to leave earlier.

Starting later means finishing later – not just with work, but with my whole day. Whereas some of my co-workers are in bed and asleep by 9:00 p.m., I’m usually up till at least 11:00 at night. Sometimes later. I try to get in bed at what I consider a reasonable hour (before 11:00), but it doesn’t always work out that way.

Lately there’s been a lot of that. For days on end I haven’t been able to get to sleep till nearly midnight. I’ve been nervous from the pressures at work. I’ve been in pain, with my body locking up from too much stationary sitting. All day, every day, I’ve been sitting nearly motionless at my desk, and my body pays the price in aches and pains. And sleeplessness. Irritation. Agitation. Every day, every night, my sleep deficit increases, and I’m keenly aware of it, as I glare at my alarm clock this morning, begrudging the early hour, anxious to get back to sleep.

I roll over slowly and curl up tight under the covers, trying to move my body into a comfortable position. Eventually I find a position that feels right, and I try to rest, but I cannot relax. I’m dizzy. The room is spinning. Again. And I didn’t even have anything alcoholic to drink last night.

I try another position that feels more stable, carefully moving so that I don’t pull the covers off my partner, who is fast asleep beside me. The silent peace of sleep, the sensation of floating gently on drifting currents, is gone. The bed feels like it’s heaving beneath me like a ship on stormy seas. I have surfaced into what feels like a building storm.

Outside, the birds are starting to sing, and their sporadic symphony of early morning song fills my head. I roll over slowly, feeling the smooth sheet beneath me, trying to quiet my body and mind, but it’s not working. I rearrange my arms… reposition my legs… deep breathe in and out, counting 1… 2… 3… 4… trying to focus wholly on my breath. But it’s not working. I feel acutely fatigued, but I’m unable to do anything about it. Not with the bed rocking beneath me. Not with the room spinning slowly. Not with the sound of the birds. Not with the day before me, as my mind envisions it – planned and plotted out.

Outside, the morning light strengthens, and I look at the clock again.

It’s 6:00 a.m., and I am beside myself with frustration. The room is still, all is silent, and I know the bed is not moving. But I cannot seem to get myself righted. I’ve been trying to think of other things than the virtual movement of my bed – breathing to the count of 4 and back… relaxing y body… running through my lists of the day. The distraction has helped. So has lying flat on my stomach with my arms outstretched to give myself a sense of stability. I’ve tried to close my eyes a number of times, in hopes of getting back to sleep, but when I do that, my head starts to spin again, and I am jolted awake. I feel like if I move, I’ll fall out of bed completely. My stomach turns with sick reaction to something I know is not happening.

I am tired… so tired. And I’m not getting back to sleep.

This is pointless

Frustrated, I decide to just get up. If I’m going to be sick on my stomach, I might as well get on with my day.

I try to rise, but my body isn’t cooperating. My arms and legs aren’t doing what I tell them. With a heave of my weight to get some momentum, I clumsily stumble out of bed. When my feet hit the floor with a loud thud, my partner stirs and complains gruffly that I’m too loud.

Too loud!” she exclaims, startled from her deep sleep.

Her voice sounds first faint, then reverberates in my head, and I try to think of something to say. But my head is spinning, and I have to quickly reach out to the wall to keep myself from falling. Steadying myself with one hand on the cool plaster, I try to locate my slippers with one foot while I steady myself on the other, and mumble, “Sorry…”

Too loud!” my beloved says again. “You shouldn’t just throw yourself out of bed! You need to move more slowly in the morning!” Then she turns over and pulls the covers up around her ears.

She often grouses when I “throw myself out of bed,” worried that I’m not being gentle with myself. Plus, I’m waking her up. I don’t always rise with such noisy force, but today is one of those days.

I want to tell her that I can’t move slowly, because if I don’t heave myself up, I won’t be able to get up at all. I’m dizzy. The room is spinning. My arms and legs aren’t cooperating. The only thing in my favor is the weight I can push in a certain direction that might – just might – land me upright beside the bed. But the words don’t come. Only a flash of nauseous temper flares up in me. I pull on my “knockabout” sweatshirt – the same one I pull on over my pajama top each morning, when I get up – and push up the sleeves. The feel of fabric on my wrists – especially cuffs with seams on the inside – chafes and irritates me, and I pull the elastic up around my forearms, just below my elbows.

I need to just get into the day. Just get on with it, already, I think to myself. I have a lot to do, and even if I am in rough shape today, I just have to do it. I try to move quietly, so I don’t wake up my partner any more than I already have. But she’s rolled over and gone back to sleep, and as I hear her breathing deepen, a pang of envy shoots through me, that she can relax so easily.

She’s always been able to just roll over and go back to sleep.

I have never, ever been so lucky.

1. Surfacing – Part 1

An excerpt from the book I’ve been working on – tentatively entitled Countdown to a Meltdown. No trigger warnings yet. That comes later.

Surfacing

jellyfish-risingAs though emerging from beneath a deep pool of dark, silent water, I feel my mind starting to wake. Upward I float, from the murky depths of sleep… my heavy horizontal body losing its sense of anchoring density, a light shimmering above me, drawing me up, drawing… drawing… coaxing me to the surface. I rise like a jellyfish… gently rising to the light above me, my tentacles hanging loose and wavy in the currents of receding sleep.

The first thoughts that push at the edge of my awareness are faint, but persistent. Indistinct. Noncommittal. Steadily building. Murmur… Mutter… Mumble… They echo like lone footsteps in a distant, empty hall, and I cannot make out any distinguishing features among them, any train of deliberate thought that grabs my focus.

Gradually, the thoughts come clearer. The day awaiting me. The day ahead. No words… just images. Feelings. Sensations. The flow of the day – like the flow of all other days – taking shape tangibly in my cinematic mind.

What I have to start today as a computer programmer at a small local eCommerce company. What I have to get done. Tasks at work. Meetings to attend. How my day will likely evolve, given the duties I have and the responsibilities I must fulfill. It all plays out in my mind like a long-familiar documentary that’s both historical and predictive.

It’s prescriptive, too. I sense the things I did not wrap up the day before. Now… I must complete my coding… I must finish that documentation… I must test the results of my work…. I must check in with the boss about my progress.

The images give way to thoughts. The thoughts became louder, sharper, more intent. My list of tasks acquires sub-tasks:

  • Documentation.

  • Finalize the summary of the problem statement.

  • Double-check the step-by-step flow of the program I’m designing.

  • Fill in the blanks in the code samples and double-check my logic.

  • Testing. Of course. Testing.

  • Make sure that my development environment is fully updated from source control, so I’m not testing the wrong version of the code and solving non-issues.

  • Write down my step-by-step process for future testing.

  • Log the bugs I find in the database.

  • Make sure I go from start to finish in my testing cycles without interruption.

  • Check in with the boss.

  • Make sure he has an updated list of all that I’ve accomplished this week.

  • Email him the list and make sure to follow up over the course of the day so it’s on his radar.

  • Make sure he knows why it’s taken me this long to complete the documentation.

My orienting list fleshes itself out in my mind, and the day ahead unfolds in my head, fully textured with clarity of thought and rich sensory detail. I see my cubicle awaiting me at the technology company where I work, I see myself walking through the motions of the day. I feel the intermittent flow of hot/cold air from the HVAC duct above my desk. I feel the floor underneath me bounce, as someone passes me in a hurry. I see my boss striding hastily across the office and hear myself calling to one of my coworkers who sits across the way. I hear the overhead sounds of white-noise air conditioning and the buzz of fluorescent lights… the hurried bustle of the sales team… the sound of the company president’s voice booming from my corner office not far from where I sit. I see the room flooded in bright, unsparing light… I see myself standing up and looking out the window on the other side of the 5-foot-high oatmeal-colored fabric-covered wall of my cubicle and catch glimpses of the outside world that’s been there the whole time, unbeknownst to me.

I haven’t yet stirred from the bed, but already my day has begun.

I open my eyes, and the bedroom slowly starts to come into focus. I look over at the clock on the bedside stand, and a sudden surge of irritation rushes through me.

It’s only 5:00 a.m. I need to get back to sleep.

Inclusive autistic traits

This is another great list of autistic traits.

autisticality

Problems

Autism is big and messy and confusing, and no-one really understands it. It’s difficult to make a good summary and description of autistic traits, because generally no-one can agree on what autism actually is. But even taking that into account, I’ve never read a satisfactory article or leaflet summarising and describing autistic traits.  Every description I’ve ever read suffered from at least one of these problems:

  • Wrongly weighted. So many descriptions of autism written by neurotypical people focus completely on social traits. Often autism is described as an entirely social thing, and any other differences are considered incidental if they’re mentioned at all.
  • Vague. The “triad of impairments” is the worst offender here. It divides social traits arbitrarily into “interaction”, “communication”, and “imagination”, but there is absolutely no clear distinction between those categories. They’re meaningless and useless divisions that are don’t remotely simplify the description, and so they serve no useful…

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Here’s the thing – I can’t afford to waste time, or have someone get it all wrong

medical-diagnosisI’m piecing together my approach to obtaining and official AS diagnosis, and it’s pretty nerve-wracking. I’ve tried before in the past, and people didn’t just dismiss me, they actually blocked me. And these were trusted friends and healthcare providers.

I’m not sure what all the drama was about with them. You’d think I was asking to get a bunch of face piercings and tattoos.  I’ve got nothing against face piercings… or tattoos. They’re simply very noticeable and semi-permanent. But not everyone feels as neutral about them, as I do.

So, if I were to get a bunch of face piercings and tattoos, that would turn me into a “marked woman” of sorts.

Maybe that’s what my supposedly well-intentioned friends/providers were thinking about. Either that, or they were just burdened by their own biases and prejudices and they didn’t want me to be “like those other people”.

What they didn’t seem to understand at all, is that the research had long since outpaced their knowledge, by far – it had moved far beyond their limited views, which was quite evident to me.

And now it feels like I’m back at that place again. But this time even worse off, because I know what it’s like to be shushed and rebuffed and dismissed, and I don’t want to go through all that again.

I need to find someone who can help me navigate this — and explain to people that what I find in an AS diagnosis is NOT stigma and disability, but community and commonality… a way to understand myself in the context of a larger continuum of human experience and expression.

I’ll be reaching out in the coming weeks to folks who I hope can help me. A local AS org chapters, for one. I really need help with this – particularly with making my case and explaining to my current healthcare providers what the diagnostic deal is with me – and also to add validity to my perceptions.

I’m pretty stressed about it, in many ways. But I can’t let it get to me. I’ve just got to keep on track and be systematic about it… and be prepared for what comes down the pike.

I really can’t afford to waste time – especially on botched diagnoses and focusing on comorbid conditions. I have a lot on my shoulders and a lot on my plate, and I need an ally who is up on the latest research and insights. I can’t go traipsing off on a medical or psychiatric adventure. God only knows what they might come up with. I’m a variable person. I have a ton of contradictions and inconsistencies, and I can’t afford to “manage” medical people who are chasing down the wrong trajectory in search of something they know very little about.

I’ve spent nearly 51 years dealing with this by myself, and I’m a little sick of it.

And I don’t want to have to deal with nitwits on top of my own issues.

So, let’s get this right, shall we?

Meltdown… or shutdown… or both?

Meltdown Bingo Autistic Edition Scorecard
Meltdown Bingo: Autistic Edition – Image Description: A “bingo” card listing many different contributors to an autistic meltdown – see https://silencebreakingsound.wordpress.com/2015/12/21/meltdown-bingo-autistic-edition/ for details.

Recently, I came across a statement that 70% of autistic folks shutdown, rather than melting down.

I’ve been having an ongoing discussion with some of my Tweeps (Twitter buddies) about the distinctions between the two, and we seemed to concur that meltdowns and shutdowns can be two sides of the same coin. OR maybe they’re really variations on the exact same thing.

In any case, what happens to us is a result of total f*cking overload. We can’t escape it — or think we can’t. We’re trapped, overwhelmed by both external stimuli, as well as internal thought processes that aren’t working in our favor. Triggered. Traumatized. Fight-flight-freeze response set into high gear, with nowhere to go with it. Freaked out. Without any apparent recourse.

And it turns in on us — whacks us out and sets in motion an internal flood — like a tsunami, as one person described it — that you can’t stop… just watch it come in, and stand in a mixture of dread and horror and dismay and desperation, as it tears apart the fragile balance that you’ve managed to put in place.

It takes a while for it all to settle down again. It’s taken a week for me to get back to feeling even remotely normal again, since my last meltdown last Tuesday, and I’m still not back in decent shape, yet. Still shaky. Still not sleeping well. Eating more junk food than usual. At a very low ebb. Not particularly productive at work — not even able to focus on what’s in front of me and follow through. Depressed… sort of… Or maybe that’s really what it is.

In any case, I need to take care of myself as best I can, to ensure this doesn’t continue to happen — as a result of negligence on my part, or the part of others around me. My wife woke up this morning with all sorts of updates about political churn that’s being created to heighten the drama of the U.S. election. That’s not what I need, first thing in the morning, when I’m still recovering from a meltdown.

So, I simply sat quietly and focused on my breathing, nodding and commenting, here and there, and then reminding her that it was still early, and this is my Final Day Off, so I really want to spend it in peace and quiet. She’s got her own perspective, and it’s important to her. I can’t just push her off, demanding peace and quiet. For all the times I’ve tried that in the past, it really doesn’t work.

Nor does it help me to learn how to handle these kinds of situations. And rather than focusing solely on controlling my environment (as I tend to do), there’s the opportunity to develop skills to help me see my way through the onslaughts, the tidal waves, the earthquakes… the lot of it, that is my life.

I simply can’t expect the rest of the world to accommodate me in every respect, and there will always be those times when I cannot have my d’ruthers. I’m an adult, living in a demanding world, and I need to meet it halfway. That means not only minimizing my exposure to pointless drama, but also cultivating the coping mechanisms that help me see things through and stay stable in the face of demanding challenges which are unavoidable — or which are just part and parcel of being married to someone with strong opinions and a burning need to interact.

Like political uproars, first thing in the morning.

I may be a bit different from other folks who invest a fair amount of time in fostering change in the world to make more room for them. I’ve now and then tried to foster those kinds of changes, myself — asking healthcare providers to not make so much noise when I see them, so the racket doesn’t add more stress to an already challenging situation… asking my partner to give me some space and not overwhelm me with her frenetic concerns about what might happen in November, before I’ve finished my cup of coffee… asking for family gatherings to be a bit more scheduled, so I can mentally prepare for what’s comin’ down the pike.

I can do all these things. I have done them. At the same time, it’s sometimes actually harder for me to navigate those changes, myself, than just go with business as usual. Pain and discomfort and predictable overwhelm has the advantage of being, well, predictable. And the people I deal with don’t have to get all socially awkward in trying to accommodate me.

It’s all a trade-off, really. I’ve never been very good at asking for help. I get confused. I don’t even always know what it is that will make things better for me. Everything is so variable, and when I do ask for help, I often get push-back, so then I need to navigate an already difficult social dynamic with yet more confusing factors. That’s not a big “win” for me.

In some ways, I’m happiest just sucking it up and dealing with it. Bracing for the “hit”. Holding my tongue. Staying still. Blending in. I don’t see it so much as capitulation or complicity, as I do a simplified (albeit frustrating and energy-sucking) way of dealing with the world, where I consult exclusively with the one expert on my needs — myself.

I like people. I really do. I like interacting with them – up to a point. And after 50+ years of learning how to “speak NT” and be fluent in the ways I can relatively seamlessly interact with them, it’s just a lot easier for me to do that, than try to educate them, advocate for myself, and foster change in long-standing, institutionalized systems and modes.

Maybe that makes me a bad autistic person. Maybe that makes me implicitly complicit in my own oppression. It probably does. But some days, I’d rather just have some peace and quiet, than even think about how things might be different.

In any case, when it comes to meltdowns and shutdowns, the causes are pretty much the same. The effects are very similar. And I need to take steps to protect myself and advocate for myself, no matter how challenging that may be.

At the very least, I have my bingo card. So, I can “play” with the people who are pushing me towards a meltdown — without realizing it, or without appreciating the long-term effect it will have on me, my life, my job, my survival.

It just might help.

Here’s hoping.

Meltdown Bingo: Autistic Edition

Meltdown Bingo

Ah, this is so great! It really expresses things well. I’ll be referencing this frequently on my blog. Thanks for posting it.

Silence Breaking Sound

TW/Content note: Abuse of autistic people; demonstrative use of disability slur; self-injury; in-depth descriptions of being in the middle of a meltdown.

UPDATE: The article on The Mighty that led to this post has been taken down.

UPDATE 2: It has been suggested to me that I note that the author of the piece, while writing as a parent, is also autistic, and that the original piece was co-authored by her autistic son.   I take issue with aligning oneself with an outside-looking-in perspective in how one writes about a marginalized group’s experience while also wanting to be seen as part of that group, but the main discussion should be about the experience and framing of meltdowns from an autistic perspective.

The Bingo Sheet meme has existed as a way for marginalized communities to catalog and make fun of the bad things they experience.  This usually takes the form of quoting…

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Still Don’t Grasp the Social Model of Disability? Try DST!

This is quite briliant. It’s what I’ve been thinking about a lot lately, but didn’t have the words to fully express.

Dani Alexis

Daylight Saving Time is quite possibly the best real-world example of how the social model of disability works that I have yet seen, as this past weekend has painfully reminded me.

Like a lot of people, I spend a week or more after the time change dragged out, sleeping poorly, unproductive, and with wildly varying moods.  Even people who don’t consciously notice the difference to their own health or mood express it in their behavior: studies show that productivity tanks, people argue more, and the number of fatal accidents increases due to the time change.  In other words, DST does a real number on our quality of life – at least temporarily.

What does this have to do with the social model of disability?

The social model of disability states, essentially, that while we may be impaired by conditions that have a medical, bodymind-based cause, we are not 

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