In search of my flow state

stream flowing through forest with the flowing water in focusI’m in the process of resetting for the new year. Resetting my activities. Resetting my priorities. Resetting my activity levels. I typically do this earlier in the year, when I’m swept up in the New Year’s Resolution blitz.

But this year, I haven’t been feeling it. At all.

It’s not going nearly as well as I’d like. Work is weird. My life is weird. It’s all kind of… weird. I don’t feel like I’m fully inhabiting my own life, and I’ve been so busy with everything, lately, I haven’t had time to stim or reach a flow state for weeks… perhaps since the beginning of the year.

It’s maddening. Probably the worst thing about the way things have gone, for the past months, is the ever-increasing level of interruption in the course of each day. It’s absolutely maddening. As in, it makes me really, really mad. I have to be able to settle into extended periods of thought, in order to be effective, and my current job is preventing that on every level.

Distraction kills, and it’s doing a hack job on my performance at work, not to mention my job, overall.

Well, that’s the job, right? That’s “just how things are” in my current professional corner of the world, and anyone who can’t keep up is left in the dust. Personally, I’d be fine with being left behind. Just cut me a check and let me go. Let’s call it a day and say it was an interesting learning experience, shall we? And let’s all move on to other, better things.

But I don’t have a substantial back-up plan. I’ve been putting out feelers for work, but the kinds of work I’ve been applying for… well, it just hasn’t been a good fit. I got a job offer, a month ago, but I had to turn it down because the conditions were, well, crappy. A longer commute. Into the thick of the worst rush hour traffic in the area. Frenetic pace. Frenzied, from what I was told. In a building where they have chemicals that smell and bright lights that blind. An open work space plan. And not more money than I’m making now.

So… no. Not that.

I put in for some other jobs, and I heard back from what looked like a really good opportunity, but after I responded to them, they didn’t get back to me. I need to ping them again. There’s a good chance they took a look at my resume and realized — Hey, she doesn’t have a degree! — and, like many others, decided I “wasn’t a good fit”.

It’s a little depressing, actually.

But it’s got me thinking… About what is actually the best work for me to do. After being a web developer for 15 years, I gradually shifted into project and program management for the past 8 years or so, because it felt like the software engineering world was closing in on me and I was getting crowded out. I felt like I just couldn’t compete with all the lower cost talent with more updated skills… the people who “fit better” with organizations… or who had degrees. The project/program management space seems to be less amenable to people who literally teach themselves how to do things, than the development space. And while that didn’t hurt my prospects in the past handful of jobs I’ve had, it’s starting to feel like it’s closing in on me even more than development did.

bomb emoji with lit fuse looking down
This is about how my “career” is feeling, about now.

And indeed, the lack of flow is a huge issue. Somehow, I seem to have acquired work that I absolutely hate. Tracking other people’s activities. Communicating to everyone who needs to know about program and project status. Navigating political minefields. Battling for my territory. Making nice with people across the organization. Being interrupted every 20 minutes (or as soon as I get into a flow state). Conference calls. Lots of conference calls. With people who have thick accents and/or are on a poor phone connection. And more interruptions. Travel. Regular business travel, which doubles my workload and completely trashes my routine.

It just feels like a setup. I can do it for so long, then I am completely wiped out. Because nobody sees how much I struggle, and I can’t let on, because that would trash my career prospects like nothing else. And I can’t chance that.

The fact that I’m really good at it, is no consolation. At all.

I mean, seriously, I’m really good at it. I’m a fantastic meeting facilitator, I can communicate extremely well to people who need to know. I know how to work effectively with offshore folks (been doing it since 2002). And I can turn on a dime if the situation calls for it.

But man, oh, man, do I pay for it. In a very big way. Of course, nobody else sees how steep the price is, because they rely on me to keep doing what I’m doing, just the way they are accustomed to seeing me do it.

And seriously, this is no way to live.

I need my flow back. I need to settle into a chunk of code and just work my way through it. I need to cozy up with a tasty algorithm and just do my thang. Seriously, I do.

{pause to take a breath}

Okay, so where does that leave me? Or rather, where does that point me?

Realistically, away from where I am now. And back into the development world. In my former life (before I trained my replacements in 2002 and was then told to go find another job in 2005), I was one of the best of the best at my chosen line of work. Web development. Front-end web development. UI coding. Cross-browser. Cross-platform. Proficient in ‘nix flavors and the command line. Not afraid of anything code-related.

And it suited me. In a very big way. Because I could create things and make stuff work, like nobody else. I could convince browsers to do things they weren’t built to do. I was good. I was one of the best. And I was relieved of my duties by the bean-counters who had no idea what the work entailed. All they knew was that I was “too expensive” and they were convinced I could be replaced.

Hm.

Yeah, as it turns out (having managed a lot of projects involving developers who weren’t even close to as good as I was), I can’t be replaced. My skills are still needed. And my interview and subsequent job offer this past December (for a developer job) tells me that I still have a future in that realm. I tend to get pretty rigid about things and get convinced that since I’ve almost exclusively done project/program management for the past 3.5 years, so I’ve been telling myself that I have to stay in that space. But I don’t. I can shift back to development. I’m the only one who’s blocking myself, at this point.

Plus, I can do my own “thang” in the process. Build tools. For mobile. Just build things that show people what I do — like Temple Grandin recommends. I’ve actually got a pretty impressive portfolio, and it’s not even complete. I need to get focused on completing it, and lift myself up out of this increasingly wretched state I’ve been in, for the past year and a half, when it first started to dawn on me that this was probably not the best job choice for me.

There’s a lot I can do about my situation, right now. I can build my own apps. I can build my own websites. I can do a lot that shows how I work. And I can put the finishing touches on some projects I started over the past years but lost the energy to do them – because I was too wiped out from my day job to keep up with it all.

So, there is hope.

But for now, it’s time to go move some snow. We got a bunch of it overnight, and I need to shovel it before the temperatures start to rise. Heavy snow is no fun.

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What a delightful week it’s been! Blissfully quiet

And I’m pretty wiped out. I’ve had most of the past week to just do the things I like to do, in the way I like to do them. Which means, a lot of sitting. And a lot of isolating. And a lot of reading and writing and researching and pulling out textbooks, thumbing through them and crying, “Ah-ha!” when I find the passage(s) I’m looking for.

I’ve been immersed in a certain mode of thought I don’t have the luxury for, in my regular everyday working life — where my co-workers are suburban parents who just want to make enough money to put their kids through school and/or climb high enough on the corporate ladder where they can vex more people than those who vex them.

It’s been so much fun, being away from that whole scene, that major drain of a scene. And while I do look forward to getting back to my routine, I don’t look forward to dealing with those people again. It’s been a real pleasure, not having to constantly come to terms with the mixture of sadness, pity, compassion, frustration, and intermittent admiration, that I cycle through each day.

But I have to say, I am pretty tired.

It takes a lot out of me, trying to catch up with myself and the kind of life I want to lead, when I have such limited opportunity. It kind of works against me. Except, it’s my choice, and I can do what I please. And in the end, I’ve got a lot of satisfaction out of the whole deal.

Tomorrow I head back into the jungle.

Wish me luck.

The #autistic feel of the words

paper with quill pen and inkwellI’ve been immersed in an intense and overdue writing project for the past week, and it’s been eye-opening looking at passages I wrote months ago, but didn’t get a chance to re-read until recently. It’s been tough going. What I thought would be a pretty straightforward exercise is taking me 2-3 times as long to get done. But at least I’m making progress.

I’ve noticed something really interesting about my writing, that’s only come into focus over the past year, since I got formal confirmation that I’m on the autism spectrum.

Namely, that I’m way more repetitive, even palilalic, than I realize.

And I do it in writing, as much as I do it in spoken words.

Palilalia is apparently a “sibling” of echolalia (which is where you repeat back words from other people (or movies or other quotes). Palilalia is where you repeat yourself.

According to Wikipedia (sans the “disorder” language):

Palilalia (from the Greek πάλιν (pálin) meaning “again” and λαλιά (laliá) meaning “speech” or “to talk”),[1] . . . is . . . characterized by the involuntary repetition of syllables, words, or phrases. It has features resembling other complex tics such as echolalia or coprolalia, but, unlike other aphasias, palilalia is based upon contextually correct speech.[2]

It was originally described by Alexandre-Achille Souques in a patient with stroke that resulted in left-side hemiplegia,[3] although a condition described as auto-echolalia in 1899 by Édouard Brissaud may have been the same condition.[1]

Apparently, Messrs Souques and Brissaud didn’t have much contact with #ActuallyAutistic folks like me, or they might have encountered it sooner. And not only in stroke survivors. Which might have helped avoid the pathologizing tendency (one can hope, anyway).

I am very, very, very palilalic. I repeat myself. A lot. And as I’m editing my work, I’m finding lots of sentences — even whole passages — that are basically repetitions of what I’ve said before, in different words. I do it so much, I sometimes literally remove every other sentence, and end up with a paragraph that says what I meant to say, to begin with — just in more succinct terms. While falling asleep the other night, it occurred to me that I could write a script to remove every other sentence from the book, and it would read much better.

Automated editing. But I have to suppress the urge to do more “hobby programming” until I actually finish this piece. It’s gone on for far too long.

Anyway, back to my palilalia. That’s my new word for the day, and I want to better understand the mechanisms of it. It’s like I tap into a concept, and that delights me. I have a visceral experience of the idea — an actual physical sensation. A form of synesthesia, perhaps? It’s like I’ve found a sweet-spot of sensed meaning. And in my joy and delight, I need to explore that concept from every . possible . angle, to make sure I’ve explored the full spectrum of the concept. I want to dwell in it… really let it sink in… and bring it home. And I also want to share it with others.


Sidebar

Please Note: I’m Autistic. Way Autistic. And contrary to the popularized definitions of Autism, I do want to share. I do want to reach out to others. I do crave a kind of connection with people outside my immediate circle of me-myself-I. So, let’s just get rid of the idea that Autism is about not wanting / needing to share. I do. We do. It’s just that others aren’t particularly interested in going the extra mile to make room for my Autistic ways.


Of course, my delight in having a sense, an experience of a concept isn’t necessarily shared by my readers. Maybe the Autistic ones… but certainly not the neurotypical ones. Non-autistics seem surprisingly happy to leave many, many conceptual “blanks” in their communication, sacrificing accuracy and thoroughness for speed. Non-Autistic exchanges generally feel like a frenzied experience of Let’s just get to the next idea, shall we? Never mind that nobody understands what’s really being said. 

Of course, there’s nothing I can do change the sensibilities of others. People tend to be generally fine with their own ways of perceiving things (heaven help us), so it’s up to me to speak to them in a way that makes sense to them, as well as what expresses my ideas. It’s deeply frustrating, because I want to convey what I’m experiencing, and I want to do it fully. Thoroughly. Intensively. Using different words to say just slightly different things about the same thing, so there’s a comprehensive representation of what I’m not only thinking, but also feeling.

I want my readers to have as much delight as I do.

But that’s not going to happen the way I want it to. Because not everybody is palilalic. And a lot of readers don’t get the nuances between different words. Truth be told, I need to be careful about using all those different words, because sometimes I have a completely different understanding of what a word means. I learned a lot of my vocabulary from books, when I was growing up, and I frequently mixed up meanings I derived by contextual inference, rather than explicit instruction. But I still used the words, anyway. And I still do. So, sometimes I have the wrong meaning. But it feels right, so I go ahead and use it — to the detriment of my writing.

Yeah, I have to be pretty careful about my writing and editing. And realizing just how palilalic I am, how good repetition feels to me, how intent I am on exploring all the facets and vagaries of concepts… it gives me a much-needed pause. It makes me a better writer.

Still, I have to wonder… is there in fact an Autistic way of writing? Do we have our own styles? Our own syntax? Our own pacing? I wonder… Just like people who speak certain languages may write a certain way in other languages, maybe Autistic folks have a “language” all or own, which then shades how we express ourselves in the written word.

It’s an idea.

But enough rhapsodizing. Gotta get back to work. And cull all that repetition. It’s the kind thing to do for my intended audience.

The resurgence of thought

Ice pillars in northern CanadaIt’s Saturday evening. I got about 2 1/2 hours of sleep this afternoon, topping off my 24 hour total of about 9 1/4 hours. I’ve needed to sleep like this. It’s been a rough bunch of weeks. Or rather, months.

After months of stress, including some really distressing changes to routine, I have finally found some balance. I’m finally back at a place where I can actually think complex thoughts. For some, not being able to string together highly complex thoughts might not be that big of a deal. For me, it’s brutal. It’s as bad as not being able to get up and move freely around the space, my back and legs cramping with intense pain. I’ve been there many times, physically, and it happens mentally as well.

Not that anybody notices. My low level functionality is more than adequate for the people around me every day. But it’s not for me. When I’m living at low-level functionality – that is, on the same level as most of the people I interact with on a daily basis – it’s as painful for me as the chronic, crippling pain was for me, 25 years ago.

But this isn’t about feeling sorry for myself. It’s actually celebratory. Because now I can get back to being me. No I can get back to doing the things that bring me joy on a daily basis.

I can pick up those books again, that I bought six months ago, and actually dive back into them. I can work on the writing pieces that I started last spring, and hope to actually complete them. I can dive into the kinds of mental and cognitive exercises that really do make me who I am, and live the joy that is my autistic life.

And I don’t have to be stuck in the conceptual equivalent of a sitcom or a vacuous reality show, slogging through each day, just trying to get to the end of it, so I can collect my paycheck and go home to collapse.

I can pull the manila folders out of my filing cabinet, open them up and rifle through the notes that I made, on and off, over the past four years, and actually make sense of it all. I can pick up where I left off, and as long as I can forgive myself for being susceptible to the exhaustion and overwhelm, I can actually make some progress.

I wonder sometimes what will become of my writing, when I’m gone. Will any of it makes sense to anyone? Will anyone care? Or will all the words just disappear into some shredding pile, or warm someone’s house as a firestarter in their fireplace?

I spend way too much time wondering about that. I need to just let it go

Because radio, right now, the only thing that really matters is that I’m able to work again. I’m able to think again. I am able to reattach the thoughts and concepts into a coherent stream, and make some sense of it all. I’m able to bring things through to completion, even as my outside life rages on with So much complication and conflict – most of it unnecessary.

I’ve said a number of times how difficult summer can be for me, in times like this, when I start to come out of my sunlight/heat/busy-ness-induced fog, I get yet another reminder of how true that is. Autumn is in full swing. We’ve changed our clocks, so it’s cold and dark, just the way I like it. It won’t be long before snow starts to fly, they will find myself out of my driveway, yet again, pushing the white fluffy stuff around. People will withdraw. Hibernate. And my mind and I will be free to do the work we need to do.

There’s part of me that wants to conceptualize this pernicious debilitation at the hands of overwhelm as a disability. And in some ways, it is. But in other ways, it’s just more background noise. It’s just another aspect of my life that adds texture. At least, I can keep working my paying job to keep things afloat, while I struggle to find balance in my own life.

If I were unable to earn a living, while this is happening, I don’t know what I would do. But that’s not one of my problems. There are other things that keep me on my proverbial toes.

For now, I just need to be immensely grateful that I’m able to think again in the ways that I want most to think. That’s a lot to be grateful for, and I really, truly am.

Meh, so I throw up. Meh, so I melt down. So what. Who cares.

bored emoticon mehWhat a horrible week this has been.

Work is just so unbelievably stupid, it’s astounding.

I’m behind on what I owe people, since — ta-da — I’m doing the work of 5 different people. Seriously. Look at the distribution of roles and responsibilities. I’m literally fulfilling the roles of 5 different people on the other side of the organization.

And that’s only for one of my three projects.

On my other two projects, I’m doing the work of three people, and two people, respectively.

Meh.

So what.

I thought I was going to throw up, today, after a conference call that was all about inept people trying to cover their asses and pin the problems on me.

Meh.

So what.

And then my boss comes by — Mr. Agitation — who really seems to thrive on chaos.

Meh.

So what.

The dumbest thing about this whole business is now simple it is to fix it.

The work is so easy, it’s not even funny.

I just haven’t had the time to do it.

Because I have to have my sleep.

And I have to eat regularly.

And I have to protect my sanity and my health.

The work will get done.

And even if I do throw up or melt down or whatever…

Meh.

So what.

I’ve been here before, and I made it through in one piece.

La la.

Feelings, feelings, more #ActuallyAutistic feelings – and what I can do about / with them

Odd Girl Out page screenshot

A few months back, I went on a “jag” about Alexithymia (click here to read posts I’ve tagged for the topic) — the inability to recognize your emotions. I’d taken an online test about it, out of curiosity, and when the results came back, it got me thinking.

And thinking

And thinking some more.

And then, while recently reading Odd Girl Out by Laura James, it didn’t take long for the topic to come up, altho’ obliquely. There’s a lot in the book that she touches on briefly and then moves on — which works for the flow of the book, especially if you understand what you’re looking at and can relate to it. For others, though, I think some gems can easily get missed. So, my plan is to (intermittently) follow along “after her” and put a little more explanation / context to the book. If you read it carefully and stop to consider what’s on each page, you’ll get a pretty damn’ good primer for what the interior world of an adult, late-diagnosed autistic woman is like.

But of course, people aren’t necessarily going to understand the significance and meaning of what they’re looking at. So, that leaves it to autistic folks to help put some context around it. I actually hope more late-diagnosed women (and men) do the same and post some interpretive commentary on their blogs, because this is a great opportunity to enlighten the mainstream about our issues. It’s an open door, so let’s not hesitate to step through.

Anyway… where was I? Oh yes… Alexithymia. Emotions. Not doing well with them. At all. Getting overwhelmed by them — good or bad — and not being able to name them. Needing words to sound like they mean. And wanting (more than anything) a neutral life that simply flows.

No sudden movements. Just the steady unfolding of days, predictably and quietly.

Sounds like nirvana to me.

Seriously, it does. As much as I want to believe I can push myself at the pace of the rest of the world, as much as I want to keep current with everything that’s happening, to not stand out as a “problem”.

Good feelings really can be as overwhelming as the bad. They still demand surges of energy to process and experience. Even if the surge of emotion is “good”, it still makes my adrenaline spike. And when that happens, my biochemistry makes it well nigh impossible to process information with higher thought. Everybody’s body does the same thing. That’s how we’re built, pretty much — stress hormones shunt energy and capabilities away from higher thought and focus them on raw survival.

That’s not usually a problem for (neurotypical) others, but it’s a big issue for me. Because I rely on higher thought processes to get through my day. It’s how I interact with life. It’s how I make sense of things. It’s how I stay safe. So, when emotions run high and my thought process gets dragged down into realms of oversimplified brute survival, it’s like chopping off a finger while I’m trying to type up a sensitive legal document that can land me in a whole lot of trouble if I mess up. Other people apparently feel invigorated by drama and stress, but I get so “turned around” and confused and disoriented, it makes everything worse.

I am not at my best, when there’s unwarranted drama — especially the kind that is illogical and purely for entertainment purposes. A whole lot of people frequently create drama to make themselves feel better, God help me. When that happens, I get dragged down into a pit of despair and disorientation that heaps even more stress on me and makes it even harder to think and process my surroundings.

In fact, the processing isn’t just about thoughts and emotions. It’s about sensory details. We autistic folks can be so “tuned in” to every sort of input around us, that we need every shred of higher reasoning we can spare, just to navigate the basics. So, when we’re inundated by stress hormones that shut down those faculties, we can literally be endangered — unsafe — threatened. Because in our diminished state, we can misinterpret clues from the world around us. Walk in front of a bus. Get mugged. Be lured into dangerous situations. Get taken advantage of, preyed upon, laughed at, even beaten up.

It’s no joking matter. Having our faculties impaired in any way literally puts us at risk. And when you’ve been through enough of those kinds of experiences (as so many autistic adults have), you develop a zealous love of sameness, neutrality, equanimity. The peace of mind and calmness of body that some people think is optional (or that you just do at a zen retreat) is not optional for us. We must have it. Or the real-world consequences can be severe.

So no, stress is not good for us. Emotional upheaval can be a problem.

And that goes for good kinds of upheaval, as well as the bad. Basically, anything that pumps up your system with drama hormones is a liability. It’s something I strive to avoid — and how ironic that I live with a bit of a drama queen. Laura James’ descriptions of the discrepancies between her temperament and her husband’s… well, that sounded familiar.

So, yeah — emotions. Wild fluctuations (which seem to be the norm, these days) are not my friends.

Plus, half the time, I can’t figure out what the heck I’m even feeling. Seriously, I have this pretty intense disconnect between what’s going on with me emotionally and my awareness of it. I’ve never really given it much thought, despite my partner’s repeated complaints that I’m “emotionally shut down”, and multiple therapists’ insistence that I must be deeply wounded, to be so “out of touch” with my emotions. I developed a bit of a complex about it, actually, taking everything they were saying to heart, and believing them. After all, they were the experts, right? And with one therapist after another telling me the same thing — almost like they’d been consulting with each other on the side — I figured they knew something I didn’t.

Actually, they didn’t know half of it. They knew far less than half. Maybe 1/67th, tops. And there was really no reason for me to develop a complex about it. Because how I process information from the world around me is just different from how they do it. I’m not damaged. I’m wounded, yeah, but in ways completely unlike what they think. I’m not “shut off” from my emotions. I just process data from the world around me in very different ways. And it takes a whole lot out of me, when I have to work overtime at processing under stressful conditions. Fatigue makes everything worse, and one thing leads to another… and before you know it, I’m in a state. They didn’t relieve my existential distress by poking and prodding at how I process emotion. They actually made it worse — which was great for them, because it locked me into a cycle of repeated problems that they were so convinced they could fix.

They weren’t fixing anything. They were creating problems. And I still resent them for it.

Well, I can’t get all tweaked over what others do. I’m Autistic. My Aspergers is in full-swing, in all its neurodivergent glory. Rather than relying on others to figure stuff out for me, I need to take matters into my own hands, figure things out, sort them out, and keep my life operating in ways that suit me. And I generally do.

I’m bumping it up a notch, too, developing some tools I can use to better manage my life, as well as sort out the emotional stuff I’ve got going on. I’m developing a system of Dynamic Strengths Mapping (DSM for short – mwahahaha) where I have a list of my strengths and a list of my relative weaknesses, and I “map” my specific strengths and abilities to my challenges.

I’m still mulling over the exact approach. I’d thought about creating a drag-and-drop web app. But that’s not visual enough for me — too much would be hidden. Then I thought about using index cards, so I can match many discrete strengths to my complex challenges. But that seems like it could get out of hand — too big, too hard to manage — and it would be really easy to duplicate information and confuse myself. So, I’m back to the spreadsheets idea, with some color coding thrown in for good measure.

I know I’ve got challenges on a regular basis. And I need a more efficient way of handling them. This DSM approach makes a whole lot more sense to me than just marinating in my misery, making myself feel awful — just awful — because I can’t figure stuff out. That’s ridiculous. Figure stuff out is what I do best. So, it’s time to work through this, come up with a workable approach, and then share it out to others who may find it useful.

Who knows? Maybe others are already doing this. I Googled “Strengths Mapping” + autism and found a lot of different approaches, but so far nothing that’s really dynamic, like this, applying specific strengths to varying circumstances. Well, whatever. I need this tool, and others might, too.

So, I’ll build it.

And the answers will come.

If you haven’t read Odd Girl Out, you really should. And take note of the details. There’s a lot in there that can slip by, if you’re not paying attention.


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Sharing: When your #autistic sensory issues shut down your communication | from Auptima Press

I talked last time about how sensory issues (hyper- and hyposensitivity) can make life… interesting. The thing is, they don’t just complicate our own lives. Sensory issues also make interacting with the rest of the world very, very challenging.

Some researchers, like Olga Bogdashina, have been advocating that the mainstream take a closer look at our sensory issues and see how they are actually affecting our ability to interact with the world — and communicate. A recent “autism awareness” campaign showed the point of view of a young boy in a shopping mall who was overwhelmed by sensory input and just shut down. To the outside world he had become a “behavior problem”.

Those of us on the autism spectrum don’t need experts and non-profit organizations to tell us that sensory issues impact our communication. Some of us have been trying to bring that point home to the non-autistic world for quite some time — to no avail. ‘Cause seriously, it’s tough to sustain the levels of energy necessary to get people’s attention and get them to understand why they should even care / believe you, when the stress of doing so is spiking your own sensory issues… which then impedes your own ability to communicate.

Read the rest of the article: When your #autistic sensory issues shut down your communication | Auptima Press

Sharing: Sensory Issues – Hyper and Hypo-Sensitivity are Real Issues for #Autistic folks | from Auptima Press

Sensory issues are a funny thing. They can be our greatest joy, or the source of our greatest pain.

And yet most people just take them for granted – at least, neurotypical folks do. The five main senses – taste, touch, smell, hearing, sight… well, those are just how we interact with life, right? And the additional senses like balance, pain sensitivity, sensing whether or not we need to empty the bladder or bowels, and sensing where your body is in space… well, those should just work. Right?

Read the full article: Sensory Issues – Hyper and Hypo-Sensitivity are Real Issues for #Autistic folks | Auptima Press

What it means to be #autistic and permeable

water pouring on a permeable surface and tricking through the porous material
Everybody else’s “stuff” is always soaking through.

The majority of people I hear talking about autism (from outside our community) seem to believe that autism is about being insensitive, non-empathetic, having no sense of others or the world around us, and being unable to relate. We’re “impermeable” to them — solid blocks of concrete that can’t let anything in.

We’re logical, because we don’t “get” the whole emotional thing. We make decisions with our heads, because our hearts are shriveled up, stunted, and like the Grinch, three sizes too small. We don’t have capacity for the “soft” sides of life, according to some — including leading researchers (who shall go unnamed, so I don’t give them any more visibility).

In a recent post, I proposed that our logic actually stems from the fact that, as autistic people, we are so sensitive — to physical sensations, as well as emotions and empathetic experiences — that we have to learn how to manage the flood of all that sensations that are constantly intruding on our experience… or else.

I know I’m not the only autistic individual who finds life a repeated assault on my senses, with my vision and hearing and sense of touch elevated… even while I tend to have very little sensation of balance and where my body is relation to the world around me, and other senses — like taste and smell and the feeling of striking something so hard I bruise — are subject to extreme variation.

On top of it all — what joy! (not) — the emotional floodgates unleash torrents of sensed experience that drag me from ecstatic highs to the deepest, darkest pits of extreme lows, sometimes in a matter of minutes. That’s how I know not to pay too-too close attention to my mood swings, and not to get too down by my depressive episodes. They pass. I know all too well, how quickly (and inexplicably) they pass. That knowledge has kept me alive, through all the times I wanted to end it all. I’m still here, because I hang onto that transience… and I hold out with curiosity.

That spiky autistic profile is not just about skills and abilities. It’s also about experience. Sensation. Permeability.

Yes, permeability. Being open to the world in unseen ways, being affected by it, impacted by it, shaped by it, in ways that no one else can see. That invisibility is partly because I’m stoic throughout. I’ve had to learn to be stoic, because a little girl who acts out, is a little girl who gets punished. Pushed and pulled — which is the equivalent of being beaten, when you have tactile sensitivities. Corporal punishment, doled out at the hands of people who probably had no idea how much they were really hurting me.

The whole world has no idea how much it’s hurting me — and so many others like us.

Second reason is because apparently non-autistic people can’t actually relate to anything that doesn’t have to do with their own personal experience. How strange, that they label us as the empathy-impaired sorts. Untrue. Untrue in the extreme. It’s the other way ’round. I feel everything. I sense everything. I participate in the cesspool of human emotions and experiences, without ever wanting to. I’m permeable. It all gets through. I only wish I were as non-empathic as I’m purported to be.

I have to protect myself. That much is so, so clear, after the past few weeks. It’s been a trying time, and I’m tired. I’m worn out. Depleted. Not only from the constant activity and the increase in social interactions (including a shit-ton of conference calls, reminding me yet again how much I hate talking on the phone). It’s been incredibly painful. But what to do? It can’t be helped. If I want to keep my job, I have to take hit after hit, and keep coming back for more. I have to put on my stoic face, remind myself it’s not forever, and step up… to get slammed. Knocked around. Exhausted, wiped out, drained… and then told I need to give more. Do more. Be more. Be like everyone. Be like normal people. Be a team player. Step up. Step up and take the hit. Everyone else is doing it, so get in line and take your daily medicine of pain. Just like everyone else.

Except I’m not just like everyone else.

I have to protect myself.

Protect myself from their inefficiencies that are making everything So . Much . Worse.

Guard myself against their bad behavior,  their oversights, and especially against their emotional outbursts.

Deflect their emotional neediness, their grasping, cloying need for reassurance (especially with this fucking election going on).

Shield myself from their pettiness, their infighting which makes everything that much worse and prolongs the process of resolution.

Heaven help me, I need to be on constant guard. I’m tired. I’m over-extended. I’m a lot more permeable than usual.

And it’s not just the bad stuff I need to guard against. It’s also the “good” stuff. There are certain people around me who are drawn to me… they have that hungry look in their eye, longing for connection… and they don’t know how to do it without bringing sex into it. It’s a danger. They want to engage in that way. They’re looking to connect. And they want to do it in ways that damages their marriages – and could compromise mine. It happens with men. It happens with women. It happens with just about anyone I know who feels vulnerable and worn out, and looks to me to ease their pain… to fill up a part of them that gets so depleted by the ways they choose to live their lives.

I have to be careful, because the shared sense of connection can fell like I’m sharing it too, when I’m not. It’s easy for me to overlook that phenomenon. And a deep sense of shared connection (which I have by default) can escalate into something more than it ever should be. It’s happened before. I’ve gotten in trouble before. And now I know better. I also know that it’s the kind of thing that I need to guard against, because I’m aware. I’m a hell of a lot more aware than the non-autistic folks who are just oozing a need to connect… emanating their hunger for intimacy that they think can be satisfied by a romantic interlude.

That cannot happen. And as uncomfortable as it is for me, when I realize it, the best thing is to — yes — realize it. And nip it. Nip it in the bud. Keep things professional. Keep things distant. Boundaries, mate. Boundaries. Friendly, but not overly familiar. Keep it clean. Keep it clear. Because I can. And they can’t.

The onus for managing the dynamics between others and myself typically falls on me. The adult in the room is responsible for the behavior of the children, and neurotypical folks strike me — quite often — as children. Immature, prone to peer pressure, and sexually inexperienced — not so much with activity – though that’s often the case – but with their sexuality, in general. They don’t have a lot of inner monitoring or management skills, and so they’re more than a little impaired. To keep myself safe, and also keep things from turning into something that’s oh-so wrong, I have to “ride herd” on the dynamics… steer them in the directions I’m most comfortable with.

It sounds unfairly burdensome to me. It probably does to you, too. But what’s the alternative? To seize each “teachable moment” and evolve the neurotypicals around me, to better acquaint them with what’s really going on inside them, train them to notice when they’re being “emotionally incontinent”, and shepherd them along the path to self-enlightenment? Not gonna happen. Also, consider that when I’m in the thick of it, I’m over-taxed. And that means my processing time is slowed. And I stop being able to verbalize. I stopped verbalizing the other day, when I melted down over a particularly challenging series of events. Seizing teachable moments only works if you’re not prone to selective mutism.

So, I take things as they come. And I remind myself repeatedly that “It’s not me. It’s them,” when I’m feeling rushes of emotion and reaction that do not seem consistent with my own perspective. It happens. I’m permeable. I have to remember that, so I don’t lose myself in the sea of other people’s runny emotional muck. Because shutting myself down is not an option. If I do that, I lose my most reliable connection to the world around me — my orientation, my advantage.

If you want the highs, you have to manage that lows. If you’re going to be permeable (and we don’t always have a choice), you have to recognize the dangers, the risks, and learn to work with them.

So they don’t work against you.

My disadvantage is … different

trees down on a road after a storm
I may be temporarily blocked, but I can still climb over obstacles and go on my way

Austin Shinn has another nice post about The Problem of Privilege. And I wanted to chime in, as well.

I’ve been thinking about this a lot – especially lately, in light of my complexifying relationship to autism. Do I call myself “disabled”? Do I accept it as a condition that limits me? Why am I so reluctant to just adjust to that, and integrate that as part of my experience and identity? I’m deeply ambivalent.

I think part of it has to do with how I’m not permanently disabled by autism. My Aspie life is more akin to running a marathon on a bad day, and a 10K minimum on a good day. It makes things more challenging for me. It saps my energy. And many times I feel like I’m wobbling around after a mile-long sprint up a very steep hill. But it passes. I do have enduring executive function issues. But I know how to fix them. I’m working on them — as well as the rest of my life.

I guess I feel like calling myself “disabled” does a disservice to folks who truly are struggling with many, many aspects of their lives on a regular basis. I know I’m not supposed to compare myself to others, but when I do, I come out looking not at all disabled. I mean, seriously, if I just take good care of myself and get enough sleep and eat right and keep exercising, use my supports, and learn as I go, I can have a great life. I in fact do have a great life.

That’s not to say that I don’t have issues which are temporarily disabling. I have huge problems with communication, at times, and meltdowns (while rare, nowadays) are a force I need to reckon with. I don’t get jokes. I have trouble figuring out when to talk on the phone. I hate the phone, period. And some days, the best I can do is just muddle through… or go back to bed and rest till I’m functional again. I am at increased risk of exploitation, because I can be so trusting and naive and mis-read social cues. I’m sure I have over-paid for just about everything I’ve ever bought, because the thought of negotiating never occurs to me in the moment. I’ve really had a terrible time, in the past, and I’ve had to work through a whopping case of PTSD as a result of the “excitement” and “adventures” of my youth.

Autism for me can be disabling at times. It has brought me up short many, many times. But am I disabled? I wouldn’t say that — in fairness to people who truly are.

I’m one of the few people I know who actually understates their difficulties. Most people I know have an “enhanced” view of their own struggles — even the folks who appear to have the most advantage, the most skills, the most money, of the population.  And it makes me wonder about the nature of our difficulties, and how we see ourselves as advantaged, disadvantaged, privileged, oppressed. I can’t speak for anyone who’s not in my demographic … so that limits how much I can responsibly say. But I’ll say what I can, because I think it’s important to consider — especially when we talk about privilege, disability, and the assumptions we make about How The World Is.

There’s all kinds of talk going on about white privilege these days, which is refreshing to me. On the other hand, I know a lot of white folks who absolutely bristle at the idea that they are any more privileged than others. The very suggestion really offends them. Even though it seems quite obvious to me, they take deep (and sometimes incensed) exception to the very idea that they have an advantage in life.

After all, they have difficulties. Their lives are not a cakewalk. They really struggle with certain things, and I don’t doubt they experience a great deal of pain as a result. I think what obscures our vision, sometimes, is that our difficulties may make it seem as though we’re not favored or advantaged (privileged) in the ways we most long for. We wish we could get special dispensation from the world, but things are tough all around, and we don’t see any evidence of that being the case.

So, we can think of ourselves as struggling in significant ways without a safety net, when in fact we do have a lot of privilege to fall back on. In my case, I’m a queer woman who’s been intermittently disabled over the years, working hard to make ends meet without a college degree to back me up. I’ve been broke, I’ve been well-off. Now I’m just barely above the “broke”line again. So, that’s not always easy. It makes me vulnerable. But my vulnerability is very, very different from others’.

Case in point: I was technically homeless in the winter of 1990. I walked out of a bad relationship with a duffel bag of clothes and the friendship of one person I could rely on. I was walking around the snowy streets of a major city (in a fairly drug-infested neighborhood), looking for a doorway to sleep in, in case my one contact couldn’t help me. I got lucky. They were home, so I didn’t have to spend the night in a doorway. I was officially homeless for a few weeks, while I looked for my own place. Had that one friend kicked me out, I would have been looking for another doorway.

The thing is, my homelessness was very, very different from that of a Black woman whom I and some friends helped to a shelter, where she was going with her three young daughters. She was apparently leaving a bad situation at home, as well — and it seemed to me that she’d hung in there as long as she could, for the sake of her kids. No, she did not want to talk about it. At all. It seemed clear that she had to go to a shelter, because of her situation. She couldn’t just take her little girls with her out onto the street. God only knows what became of her family. I, on the other hand, was able to pick up and leave a bad situation, just a month or two later, with a sense of elation and hope, not dread and desperation.

My situation was a passing inconvenience, and I knew that because I was a young white, middle-class woman who nobody guessed was gay, I could expect special consideration from others — especially from white men middle-class men who may have seen me as a potential partner. Not that I was taking advantage of that, but I was always so very aware that my homelessness and my difficulties were temporary hardships, at best, which others (white others) would jump at helping me solve. I got my divorce for free, because I worked at a law firm. I got a few pieces of furniture for very cheap, because someone at work told me about a going-out-of-business sale that was happening elsewhere in the office building. I could fall back on an informal network of white folks who looked out for each other (especially attractive young white women), and get the support I needed. I used that network to find a room for rent in a nice house in a safe (white) neighborhood. And I could walk around late at night without too much concern, because young white women especially were protected in that area by men and elderly women who kept a watchful eye.

This is why I am reluctant to call myself disabled or disadvantaged — because beneath the surface, there are forces which look out for “their own” and mitigate the impact. And those forces tend to favor people who look like me. That’s something that precious, precious few white folks are aware of. It’s not that we all have it easy and cushy and whatnot — there is just a whole lot more that we can take for granted… and often never suspect that others can’t.

I can also take for granted that, even if I’m wearing very thin and am having trouble balancing, tolerating light and sound and touch, can’t make myself clear (or can’t even talk at the moment), and I can’t understand what anyone is saying to me… if I just take care of myself, rest up, and use my tools, I can restore my functionality to acceptable levels. I am not permanently knocked out of the perpetual competition that can be life. I just usually feel like I’ve just run a 10K; I’m wobbly, sore, weary, and I don’t have a ton of energy to spare on fruitless pursuits.

My disadvantage is far more of a difference, than it is for many, many people. And while my situation may be intermittently disabling, the last thing I want to do, is compromise their position because I’m showing up calling myself “disabled“, when I can clearly take so much for granted, than they ever could.