More quiet. More light.

person standing at the bottom of a cave with light shining downIt’s been a pretty low-key week for me. I made the mistake of going on Twitter last Monday, and I got caught up in a roiling, churning mass of conflict that ended up in me muting a handful of people I used to follow, but who had become pretty aggressive and dismissive in their attitudes towards people like me.

Yeah, no thanks. I really don’t need to be told I don’t deserve full respect and consideration — not to mention the benefit of the doubt — by people who share my neurotype. To say I was disappointed, would be an understatement. I just couldn’t believe that people who base much of their online identity on measurable difficulties with socialization and communication and (ahem) empathy, would just say whatever came to mind without realizing that their self-proclaimed limitations were in full-swing… and act accordingly. And as for folks who know as a matter of fact that autistic people are intensely sensitive… but still press ahead with hurtful, exclusionary statements (which are obviously opinions) as though they were God’s Truth… I just can’t even…

Buh-bye…

The net effect was that I went underground. Not literally, though I wish I could have. I just pulled back. Stayed out of interactions on Twitter. Muted more people. Expanded my social filter settings to screen out the virtual screaming. And went about my life.

Depressed.

Cold.

Disconnected.

Depleted.

Things haven’t been all that great with me, over the past weeks. I’ve been through a number of upheavals at work and at home, and not getting to go to my nephew’s wedding in 3 weeks is really bothering me. There’s no way I can make the trip down to Baltimore in mid-August (August!), deal with the whole loud crowd of my family, the unfamiliarity of the situation, the social requirements, the logistics around travel and making sure my partner is okay while I’m away. She can’t make the trip, herself — mobility issues, not to mention the overwhelm for her, as well. It just all feels so overly demanding.

And then there’s the conflict around my nephew’s own spectrum-y self. He struggles with many of the things that I do, but I can never seem to get through to him. He seems to be afraid of me. And yeah, I have been a scary person in the past — especially when growing up. His mom (my sister) still has a ton of issues towards me. Old resentments, hatred, conflicts about any number of things I said, did, or simply was, while we were growing up. Her eldest two kids (who seem pretty spectrum-y to me) seem to have inherited a lot of those issues towards me. And they’re either standoffish towards me, or they take me to task.

Everybody in my family seems to enjoy taking me to task. They seem to think I do the “boneheaded” things I do on purpose. Not much tolerance or leeway there. But then… Aspies. With their black-and-white thinking. And God help you, if you stray outside their range of acceptable thought/behavior… which I constantly do. They still criticize me for not finishing college, even though they actually contributed to the issues that overloaded me and sent me into an agoraphobic tailspin for years after I had to leave university. As far as they’re concerned, I’m just lazy. Defiant.

Whatever.

All around me, it seems like people are just living their lives, getting on with things, living up to their potential. And the best I can manage is getting up each day, going to work, keeping up with my responsibilities, and being reasonably effective at the limited range of things I do. I looked into going back to school, a few months back, and it looked promising. Do-able. Even affordable (because my work offers tuition reimbursement). But when I thought honestly about it, the idea of being locked into a certain course, being forced to take courses at a pre-established pace, in a pre-established order… and not having any leeway in terms of taking a break or getting some space to regroup (once you start, you can’t stop for 2-1/2 years)… it just wasn’t possible. From one week to the next, I never know how I’m going to feel, and with all the real-world responsibilities on me — working full-time, caring for a dependent spouse, being a member of a town board, taking care of the house, helping with a variety of extra activities, and taking care of myself with my requisite activities that soothe and center me — there’s just no way I’d have the energy or the resources to add part-time school to the mix.

I will say, though, that it hasn’t been completely dismal for me. There have been some bright spots. I’ve been reading more, lately. Writing more, too. Studying and checking out (free) online courses I can take. For the sheer love of learning. At my own pace. I’ve got some new foci for my intense areas of specialization, and that’s good.

At least I have that.

Well, not “at least”… actually, it’s pretty awesome, these “new” interests, which are really rekindling of old interests. Anatomy. Lots of anatomy. Cellular, too. And biochemistry. For someone who never finished university (four years, but no degree), I know a sh*t-ton about this stuff. Autonomic nervous system. Nervous system in general. It might not do me much good, academically, but it sure comes in handy in everyday life. Just knowing the difference between fear and anxiety has been a huge help for me.

And that’s what it all comes down to. Helping myself. Because others can’t. I’m pretty much beyond help from others, as far as I’m concerned. My needs and difficulties don’t “synch” with others’ expectations of me. I’m slow where others are fast, and blazing fast where others are slow. So, color me out of place. Perpetually. I’m “sub-clinical” when I’m in decent shape. And when I’m struggling, I often feel like such a disappointment to others (who expect me to be “high functioning”) that they just punish me for showing my vulnerability.

Yeah, I’m pretty much beyond help, in terms of other PNT (predominant neurotype) people. The mainstream has no clue what to do with me, aside from blaming and shaming me. So, never mind them. Life’s too short to spend hassling over those folks. I can help myself. In some really significant and meaningful ways.

That’s what I’m dong, these days. Helping myself. Digging into the things I love with all my heart, without getting bent out of shape over not being able to do them more often (or professionally). I’m still not happy about not getting to do the things I really want to do… weddings, university courses, etc… and I shed my share of tears over them. But that shouldn’t stop me from doing — and loving — the things I can do… sequestering myself with my anatomy atlases and researching furiously online … at my own pace, on my own time, in my own way.

It’s not all good, but enough of it is, to make it well worth it.

Making space for my flank pain

pier over the beach, with the ocean in the distance

I’ve had some weird, inexplicable pain in my right side for over a week. Pain tends to come and go with me, and I often find myself with strained muscles, pulled sinews, general soreness, etc. It typically goes away after a few days, so I rarely pay it much mind.

That just comes with the territory when you do your own stunts.

But for over a week, I’ve had some pretty intense soreness in my right lower ribs. I haven’t been able to breathe easily, and laughing, coughing, yawning all send a sharp jab of pain through me. It’s been hard to sleep, and it’s been hard to sleep in. I go to bed later and I wake up early, which doesn’t do much for my frame of mind – and body.

Still, I hadn’t been spending a lot of time thinking about it, researching it, or otherwise paying more attention to it, than the intermittent OUCH! that comes after a sigh, an inhalation, a laugh, or a cough. Until the past few days — after the 7-day mark — when the persistent pain just got to be too much.

I called my doctor’s office and made an appointment. And I did some research. I isolated the experience — what hurts and where… when does it hurt… what did I do differently, lately… what makes it worse or better — and I wrote up some notes. I used a version of the Listening to your Body Worksheet over at AuptimaPress, and I added notes about my symptoms and my concerns.

I really hate going to the doctor. I never feel like I do a good job of communicating what’s going on with me, and by the time I actually see the doctor, I’m often overwhelmed by the sensory experience and not thinking very lucidly. But writing everything down (well, the important pieces, anyway) actually helped me.

The main thing is, I just need to make room in my life for this experience, this pain, this thing that needs to be fixed. Ignoring it wasn’t helping me. Paying attention (hopefully) will help.

The adventure continues.

I love my #autistic routine – but sometimes I need to change it up

picture of a bridge leading out to the sea at sunrise, with a bubble in the foreground enlarging and flipping a section of the bridge upside-down
picture of a bridge leading out to the sea at sunrise, with a bubble in the foreground enlarging and flipping a section of the bridge upside-down

I woke at the usual time, this morning – around 6:45. I rolled over and noted my sleep time in my sleep journal – a predictable 7.25 hours. It’s Saturday, but I am still on schedule.

I’ve had my morning exercise, 20 minutes of riding the exercise bike while checking Twitter, followed by some light stretching and juggling to loosen up my upper body. I lifted weights yesterday, so I want to give myself a break to let my body catch up.

I had my breakfast — a single egg whipped into a froth, then poured into a small non-stick pan and covered for about 10 minutes till it rose like a mini soufflé. I also made myself a cup of coffee while the egg was cooking, making only half a cup because too much caffeine triggers migraines with me, and I already have a bit of a headache this morning. When the egg was ready to eat, I sprinkled some salt and pepper on it and ate my little puffy cake in a meditative state. Somewhere between the 2nd and 3rd bite, I downed a few vitamins — B-Complex to keep my system stabile, and D3 to keep my levels up.

After I eat my egg, I usually just put the dishes in the sink and clean them up later. My partner’s not all that happy about that little habit, but I’m usually deep in thought by the time my little breakfast is done, and I have other things to do than wash and rinse dishes. This morning, though, I cleaned up after myself.

I need to change up  my routine. I love my routine. It keeps me going. But I need to change it up today. So, I gathered some stuff I need to work on today and brought it downstairs from my upstairs study where I was storing it. Some of the things I’ve needed to do for over a year and a half — like setting up a new computer for my partner, who needs to do some audio production and has to use the old Mac that’s served us well, but never seems to have enough space on the drive and needs continuous care to not crash in the middle of a recording session. Those crashes are mini-catastrophes, sometimes wiping out 50 minutes of work, when she just needs another 10 minutes — 10 minutes! — to be done.

My partner does her audio work in the wee hours of the morning, when the world is quiet and she won’t be interrupted. So, there have been times when I’ve been woken up by great wailing and gnashing of teeth at 3 a.m.

And that’s never good. Not for her. Not for me. Not for her projects.

So, this weekend, I’m going to fix that.

I’m also fixing up my study, which has been a kind of “holding pen” for the duration of the past fall… winter… spring. It’s summer, now. Time to get back in there and rearrange things. Set things up. Clear away the piles and piles of research and reading and various interesting gadget acquisitions that seemed like a good idea at the time. I’m a compulsive reader and researcher, and with all the new work being done on autism and various neuro-chemical-biological subjects… I get carried away. Especially with the autism stuff.

I’ve got a whole lot of books I’ve acquired over the past year — all of them deeply interesting to me. But I haven’t had time to read them. I’m now in a situation where my study is more like a formal library than anything else. And like the neighborhood library, I haven’t read most of the books on the shelves. But I want to. And it’s my intention to start. Actually, I’ve already started, so I’m making good on my intention. That’s good. I need that.

Truth be told, my routine sometimes stops me from living my life the best I possibly can. It keeps me from doing things I want and need to do because, well, they’re not part of my routine. It keeps me from doing common-sensical things like:

  • Shopping at an early hour in the day, before the crowds all show up.
  • Cleaning my house on a regular basis.
  • Keeping my study organized.
  • Running extra errands that need to be done right away (not months later).
  • Setting up a top-of-the-line computer (a digital audio production workstation, really) as soon as I buy it, and getting that running.
  • Sewing torn clothing.
  • Keeping my garage clear of clutter.
  • Etc.

You get the point. I have my morning routine: rise, exercise, eat, sit down to write for a while… then get on with the day. On weekdays, I’ll often get on a conference call at 8:00 or 9:00 a.m. (after I’m done writing) and then get going to work around 9:30 or so, arrive at the office around 10, then stay till 5:30 or 6:00 or 6:30, when I’ve finished up for the day and/or the traffic has calmed down. On weekends, I’ll write all morning, maybe take a walk, have a little lunch, run the trash to the dump or do some shopping, take a nap, and get up to putter around the house or read some more. Then it’s time to make supper, and my partner and I will have our “dinner and a movie” in front of the t.v.

All of this keeps me moving forward predicatably. But sometimes it also blocks me, and I have to change things up. Sometimes I need to do more than the usual. Sometimes I need to do something very different from the routine. And I think I need to break things up a bit more, actually.

Like last weekend, my partner and I went to visit a friend in the hospital. We ended up having a really good day of it, and we had a nice little take-out dinner from a cool little cafe we found a few months ago. Unfortunately, I had a bad reaction to the food, and it’s taken me all week to tame down my system and get feeling relatively normal again, but it was really fun while it lasted.

Like for the past few weeks, I’ve been getting an earlier start than usual, getting in to the office around 8:30 or 9:00, instead of 10:00 or 10:30. It really makes a difference in how much I can get done, having those extra couple of hours in the day at the office (instead of at home). Of course, I’m completely . wiped . out . after the full week, so I pay a price.

Like, last night, instead of sitting down to read and write, I proverbially put my head down and “made a run at” my study, rearranging and removing stuff and getting the books on the shelves and the notebooks into a box (that’s more appropriate for my notebooks). I was amazed to see just how broadly I’ve been spreading my interests and efforts, over the years. I get fixated on certain ideas that I think will be great — just great! — but I tend to fixate on too many at the same time, so none of them actually ever come to fruition. That’s a habit I need to change, and looking through all my old notebooks was a great wake-up call for me, last night.

I made good progress, last evening. And it was good. Dinner was late, and I got to bed later than I should have. But still. It was a really productive time, and now I can go back in my study without triggering a panic attack and feeling like a total loser and waste of space. Not managing my own space has a really negative impact on my self-esteem. I actually have a study of my own, packed full of all the stuff I love the most. After growing up in a crowded house where I had no space that was all my own, where we kids were “stacked” on top of each other, and there was literally just a square meter-and-a-half in the middle of my shared bedroom to move around in… after several years of living with a partner who was controlling in the extreme and demanded silence and total obedience… after living in one space after another that was smallish and didn’t always have a door on my workspace and certainly didn’t have the amazing view of the back yard and wildlife that I have now… it’s not something to take for granted.

I don’t take that for granted. At all. I just haven’t done a very exemplary job of stewarding my space, my time, my energies. I mean, I’ve managed. But making the most of it all? That, I have not done.

I’m not being irrationally hard on myself.  I know I have executive function issues. And I get so tired… But I’m also a grown-up who knows how to handle problematic situations when they arise. And my routine has become a problem.

So, I’m doing something about it. I’ll finish this blog post, then head out to run errands that need to be done. Or maybe I’ll crack open the box of that computer and — after 18 months of sitting idle — boot it up, at last. I know the 1-year warranty has lapsed, and I don’t know what kind of support I can get for it, but if I get in a jam, I’ll just check online. Or give someone a call.

Whatever I choose to do first, I’m going to do it. And get moving. Get into the day. Give myself a running start and settle unfinished business. It’s important. To me. To those who depend on me. And I haven’t been doing a great job of keeping up with the variety of things I need to do. I’ll move past the embarrassment about this, move past the dismay that such “simple” things tend to be so challenging for me, just shrug my shoulders at the fact that I’ve let so many important things slide. And do what I can.

Because I can.

And I should.

And I shall.

I do love my routine. But it doesn’t always love me back the way it should.

Embracing the rigour of the #autistic life*

Every day is strenuous for me. I’m constantly testing and pushing myself. Does that make me disabled? I don’t think so. It makes me different in ways that are more demanding than the average person experiences.
Every day is strenuous for me. I’m constantly testing and pushing myself. Does that make me disabled? I don’t think so. It makes me different in ways that are more demanding than the average person experiences. – Quote from The #autistic medical model makes me sick

* Note: I’ve spelled “rigor” with a “u” (British spelling) because it actually feels more rigourous 😉 Ha ha! Just having a little semantic fun on a Friday.

This is another one of those dog-tired days, when my mind is spinning and I have no idea how I’m going to get through the day. I’ll get through it, of course. It’s what I do. But in one piece? In a good frame of mind? I dunno.

I have to deliberately remind myself of the fact that I’m tired, because I tend to lose sight of that. I get so tired, I can’t figure stuff out — including what sorts of emotions I’m having, and what I should do about them. I get physical weariness confused with depression and low self-esteem. It probably sounds strange, but a lot of different emotions feel like each other to me, so I have to sort them out logically, scientifically, objectively, in order to not get dragged down into an emotional hole. Once I figure out what the emotions are really about, I can get on with my life without quite as much suffering.

Come to think of it, I think that’s why blogging helps me so much. It helps me sort out my emotions — literally — and figure out how I’m truly feeling.

Anyway… I’ve had a heavy week of peopling, and it’s taken a toll. I had a lot of meetings, some of which felt like utter failures, but which were actually okay. Nobody seemed as horrified by my performance as I was. They all seemed to think everything was fine, while I was convinced I was careening towards disaster. I know where the disconnect is happening. My emotions are getting jumbled up, and I don’t have the presence of mind to sort them out, sometimes. I haven’t yet gotten back in good shape from my business trip, last week… and last night, it felt like the whole world was falling down around me. I just wanted to crawl into a hole and leave everything behind. I really wanted everything to just end. My marriage. My job. My mortgage. I wanted to take the money I’ve saved, get in my car, and keep driving till I didn’t recognize anything around me.

Start fresh. Leave all the overwhelming and inescapable responsibilities in my rear-view mirror. Literally. Stop it all. Just stop. And start fresh. Run away! Run away!

Run away! Run away!
Run away! Run away!

I knew I was tired… logically, I knew it. But the whole alexithymia thing was dragging on me (as it often does). I knew I’d had a highly interactive week. And I also knew that I had fallen behind in a lot of my work. But I was really unclear about how I was supposed to feel about that. Was I supposed to be proud of myself for making it through at all, or frustrated with myself for not doing everything I’d intended to? Was I supposed to be depressed because I didn’t live up to my promises, and I’m putting my team and projects at risk? I wasn’t clear about all the stuff I’d actually gotten right — it just felt like everything was wrong. Again, emotional confusion based on my physical state… bone-tired weariness….

And now I can’t find my power cord for my work laptop. That’s unfortunate. I’m working from home today, and I’ll need to plug in. For a while, at least.

Well, I always have my mobile phone to use in a pinch. I can do just about everything I need to do on that device. I’ll just be judicious with how I spend my power. And I’ll order a new power cord from facilities.

Or, I’ll drive to the office and get the cord I have there — no, come to think of it, I’m not doing that.

But I digress. I started out wanting to write about how an autistic life is a rigourous life, by its very nature. In my piece about how the autistic “medical model” makes me sick, I talk about how just because autism can be demanding — even depleting — that doesn’t make it wrong or disordered, in and of itself. It’s demanding, yes. But it also has a whole lot of advantages, and I wouldn’t trade it for the world.

Wanting to “cure” autism, in my mind, is like wanting to cure fair skinned people who live in sunny climates. Should “ginger” folks who burn at the slightest exposure to the sun be forced to expose themselves to sunlight without any skin protection so they can get used to the UV rays. That’s never going to work. We all know that. It’s just going to harm them. Burn them. Make them miserable. Possibly give them cancer, eventually.

Or another analogy: forcing kids who are allergic to nuts to eat peanuts, so they “get used to” them, and refusing to give them a shot to counteract the anaphylactic shock. That makes no sense. No parent in their right mind would do that to a child they love, and countless schools jump through all kinds of hoops to keep allergic kids away from nuts. But they won’t make accommodations for autistic kids who are suffering — often (like me, once upon a time) in silence.

“Exposure therapy” for autistic people is a ridiculous concept. And yet that’s what autistic people are expected to pursue — “suck it up” and just get used to the equivalent of burning sunlight on fair skin… or metaphorically eat a handful of peanuts (with no Epi-pen in sight), to acclimate their bodies to the substances that make them swell up in life-threatening ways.

It’s absolutely pointless. And it’s counter-productive in many ways. Accepting that an autistic life is an exceptional life, which requires greater rigour than the neurotypical mainstream way of life, is — to my mind — core and critical to understanding autism, in the first place. And that acceptance needs to happen on two fronts — 1) with the autistic individual (who probably already knows it), and 2) in the broader world outside, which has a lot to learn about how to A) stop hurting us, and 2) make the most of our talents and abilities.

See, it’s not easy accommodating us. It’s not easy getting accommodations in the first place. In my case, alexithymia keeps me from seeing and sensing clearly what I actually want and need. I literally do not know, at times, just what that is. And then I need to figure out how to express those wants/needs in a way that makes sense to neurotypical folks. It’s not easy. And I often just “bag it” — leave myself and my own wishes/needs out of the equation, so I can live my life more simply. Once I get what I ask for, I then need to navigate using it properly and managing the situation to make sure I’ve gotten it right. Hm. That’s certainly not easy! And I need to give feedback to people about whether I’m all set or not — yet another challenge.

For the rest of the world, it’s even more confusing. They don’t understand how I function, they don’t understand what I need or why I need it. And they often don’t know whether things are working as desired.

Fer-example: People I work with don’t understand why I sequester myself in my cubicle, more often than not. They think I should be socializing with them, chatting for extended periods of time about this, that ‘n’ the other thing. They don’t seem to understand why I wander off when I’m overwhelmed, and they don’t get why I sometimes chase them out of my cube. They don’t understand why I’m not a big fan of going to loud, busy bars after work to socialize and eat food I shouldn’t be eating, surrounded by people who are drinking things I dare not drink. I’ve tried to explain, but it falls on deaf ears. I’m in the minority. My job is to “catch up” with the rest and conform. For the sake of the team.

My boss seems particularly mystified by me, even though I’d bet good money on the chance he’s on the autism spectrum, himself. He’s got a very Aspie-fied approach to understanding people, and social interactions seems to be his #1 area of specialized focus. He makes the effort to include me, to get me involved in things, then he’s confused when I’m not all whoop-dee-doo! about participating in things like business trips to Las Vegas, or wading into receptions and social “mixers” with complete strangers.

The thing is — and this is what I think gets lost in the whole autism accommodations discussion — when I (and others) are provided the different circumstances we need, in order to be at my/our best, the results far, far outweigh the costs, in terms of overall value/expense. There’s a massive “ROI” on letting me (and others like me) function the way that best suits my/our autistic nature.

That’s why the general concept of “accommodations” kind of irritates me. It’s too disability oriented for my taste. It feels like it’s all about managing deficits, preventing meltdowns, and doing the equivalent of replacing all the divots on the golf course, so somebody else can play through without disruption. It feels to me like it’s too much about avoiding disaster, and not enough about making possible the amazing, remarkable, unique results we can provide… if we’re just allowed.

Yes, autistic folks DO have issues with environmental aspects that are best avoided/mitigated. Yes, we DO suffer terribly, when we’re not accommodated and we’re forced to “suck it up” and just power through. The thing is, when we live and operate in a world that is exactly the way we need it to be, amazing things can happen. I’m not just talking about inventions and discoveries and cultural creations that move the human race forward. I’m talking about an extraordinary quality of life and humanity that can emerge to widen the understanding of what it means to be human, what it means to have a soul.

There are plenty of autistic people who don’t seem to have any particular skill or talent that sets them apart from the neurotypical crowd. And those people have value, as well. The ones who have learning difficulties or disabilities. The ones whose IQ scores are lower than expected. The ones whose burning passion is a select class of inanimate objects that most people don’t give a second thought to. And then there are the ones who have no burning passion at all, who don’t know what they’re feeling about anything, who feel no joy or elation, who frankly don’t know why they’re even here. Those autistic people have value, too — in ways that very few people can understand, but still matter. Very much so.

Autism is by its very nature rigourous. And when you accept that, welcome it, even embrace it, you’ve got yourself a pretty interesting life, I have to say. For me, the rigour happens every day. And by the end of it all, I’m wiped. Just done. By the end of a work week, I sometimes don’t even know my own name or recognize myself in the mirror. But I pull myself together and keep going, regardless of whether or not I’m on good terms with my reflection.

Because there is work to do. And I choose to do it.

For today, I won’t withdraw all my savings from the bank, hop in my car, and drive away to leave it all behind. There’s a good chance I won’t do that tomorrow, either. Or the next day or the next day or the next… It’s enough to recognize that that’s what I’d absolutely love to do, because this life-ing stuff isn’t easy. It’s rough-and-tumble, and it hurts like hell, sometimes. But that’s the deal. Joy and pain. Sunshine and rain. It’s all part of it, and yeah, it’s worth the trouble. Every bit of it.

Autistic rigour. I wouldn’t have it any other way.

Otherwise (autistically) engaged

broken window looking out at sky
Beyond the break, there is wide open freedom.

It’s Thursday. I’m tired. No, more than that. I’m exhausted. Dragging. Dulled down in a very uncomfortable way for me. I hate this. But there’s no escaping it, so I might as well make the best of it.

It’s going to take a while for me to recover from my business trip last week, And I’m not happy about it. Being this tired makes it hard for me to stick with my routine, but of course I need to do that. So I modify it somewhat. I shorten my work out. I spend less time on things like preparing and eating my breakfast. I set lower expectations for myself at work.

Work has been extremely demanding for me, lately, and I’m not happy about that. I keep falling behind in things, and that makes me incredibly uncomfortable. But then I realize that everyone is falling behind in their work, so that’s some small comfort. Even if I have a really hard time with it, I’m surrounded by people who still support me, who struggle with the same sorts of issues, and who aren’t about to chase me out the door because of it.

All in all, I really do like my job a lot. It’s just exhausting. I’m wiped out by Wednesday afternoon, and then I’m pretty much of a zombie for the last two days of the week. That’s where I am today. Fortunately, I can work from home tomorrow, and I can take a nap in the afternoon, which will be a help.

I don’t mind the challenge of my job. I welcome it. I could just do without the exhaustion. I think I’d enjoy it so much more if I could just stay rested.

The one thing that would change everything for the better, is being able to take a nap mid-day. If I could only lie down for an hour, each afternoon, I would be so much more productive. And I need to do that every single day, so I don’t fall behind.

I have talked to people about my trouble sleeping, and they have all encouraged me – even urged me in the strongest of terms – to not disrupt my sleep-wake cycles with naps, because supposedly that will throw off my circadian rhythm. But these people clearly have no idea how exhausted I am by the end of the day, and they don’t know what it’s like to have that cumulative effect of one exhausting day after another.

I’ve been thinking a fair amount, lately, about how I engage with the world. There of been a lot of conversations on Twitter, lately, about eye contact – and I shared a paper, recently, that pretty much says what we already know, albeit in scientific terms and with data to back it up. Also, people are talking about memory, and why we as autistic people remember things differently. My head is spinning with all these great ideas, and stuff is “gelling” in my head… just in chunky form. I’m sure there’s a common theme there… somewhere…

My understanding of memory is that it is a complex thing which is made up of a number of different components. In order to have a memory, first you have to create it. Certain parts of your brain have to be engaged to really make it salient – to make it stick. And then, you need to be able to retrieve it.

That might be why so much of my prior life is a blank. I’m otherwise engaged in the world around me, and I’m noticing things on a much more detailed level, than those big “meta” concepts and experiences.

I can’t speak for anybody else, but when I am in the thick of a situation that is innately challenging / hostile to my autistic character, I spend more brain and body cycles on navigating all of the sensory details and trying to sort through what it all means, rather than making specific memories about specific things. If somebody is talking to me about something I’m not particularly interested in, or I’m stuck doing something I don’t like, that also has an effect. I won’t necessarily invest the brainpower and really experiencing that fully enough to make any sort of enduring memory. Maybe it’s sticks, maybe it doesn’t, but there’s really no guarantee of anything.

And if someone is interacting with me or I’m experiencing life in a way that is completely overwhelming to me – someone is wearing too much perfume, the lights are too bright, the temperature is not hospitable, there’s a lot of background noise, someone feels the need to keep reaching out to touch me… or any number of other sensory inputs or intruding on my attention – there’s a slim chance that I will retain that in my memory banks. Detailed memory is probably not going to happen.

So, where does that leave me? I have huge gaps in my recollections about what went on in my life in the past days, months, and years. My family typically start conversations with me with a question “Do you remember…” and as often as not, my answer is, “No.”

I’m not sure anybody outside my head – except for the autistic folks who read this and my friends on Twitter – fully understands this phenomenon. I’m so busy parsing everything around me, that I can’t really engage fully with what’s in front of me.

Then again, I am engaged. I am involved. It might not be with the same things that everybody around me is engaged in, and I might not be making the same sorts of memories as the people around me, but I am engaged. Chances are, I am wrapped up in my own thoughts, parsing through data which I find a heck of a lot more compelling than what’s happening right in front of me, or I’m thinking about things in a completely different way than most people around me.

That’s really my strength – and when it works out – especially when I’m not exhausted. It’s a thing of beauty. I can live and interact in a world filled with people completely unlike me, and still bring my own unique perspective to the situations we are in. I can find profound joy and relief in my own particular interests, even while the rest of the world is operating in some parallel universe. They have their space, I have mine.

Somehow, I’ve figured out how to make peace with that — and make my differences work for me. I’ve adopted a persona, which I have refined over the course of decades, which works in social situations. I’ve developed a role – a performative mantle if you will – which secures a place for me in social situations. Neurotypical people seem to be comfortable with roles and performance of specific behaviors. So I’ve figured out how to do that in a way that is positive, constructive, and true to myself. Am I masking? Of course! Am I camouflaging? Of course! Everybody is, in the neurotypical world, and I think that’s something that autistic people tend to lose sight of – if we have sight of it at all, to begin with.

It’s a careful balance, of course. Balancing performance with actual essence, meeting the social requirements that will keep me out of trouble… along with being true to myself. Engaging with the world on my terms – albeit while making concessions to the larger whole. It’s not easy. And sometimes it’s not fun. And it’s exhausting. But there are enough rewards that it’s worth it for me.

I may be otherwise occupied while the rest of the world spins around me, but I am still engaged.

Sharing : The Autism Definition Debate – Language Matters

Autistic individuals share a neurological type, which is qualitatively different to that of non-autistics, and which will necessarily impact, both positively and negatively, on aspects of their thinking and learning; sensory processing; social relational experiences; and communicative style, abilities and preferences. An autistic person’s experience of and ability to be successful in the world, will be dependent on the closeness of compatibility, between their individual profile of skills and requirements and their physical and social environment. Levels of sensitivity to environmental factors vary between individuals, and within the same individual over time, so that the presentation of autism is ever changing. A person’s neurological type, however, remains constant, and being autistic is a lifelong identity (Leatherland, 2017).
Quote reads: Autistic individuals share a neurological type, which is qualitatively different to that of non-autistics, and which will necessarily impact, both positively and negatively, on aspects of their thinking and learning; sensory processing; social relational experiences; and communicative style, abilities and preferences. An autistic person’s experience of and ability to be successful in the world, will be dependent on the closeness of compatibility, between their individual profile of skills and requirements and their physical and social environment. Levels of sensitivity to environmental factors vary between individuals, and within the same individual over time, so that the presentation of autism is ever changing. A person’s neurological type, however, remains constant, and being autistic is a lifelong identity (Leatherland, 2017).

Here’s another great contribution by Luke Beardon (and others) — The Autism Definition Debate – Language Matters

Education is all about teaching and learning. Well, it should be all about teaching and learning, however, for all teachers to teach and all learners to learn, it must also be about equality of access. From my perspective, as a member of The Autism Centre, equality of access, through the genuine inclusion of autistic students – which sometimes means adaptation, and sometimes means making reasonable adjustments under the Equality Act – always means that practice should be based on a good understanding – not necessarily of autism per se, but of how autism impacts on the student, within his or her own specific environment, at any given time.

But where is the starting point for all this understanding? What are the building blocks upon which to develop educators’ understanding, which might lead to good teaching and successful learning, and reduce risk of inequality for autistic learners?

Read the full piece — The Autism Definition Debate – Language Matters

The #autistic medical model makes me sick

iceberg floating in water
There’s more to my autistic self and experience than the medical model can conceptualize

Note: This piece is about me — and only me — it’s my deeply considered opinion, based on my own personal experience of inhabiting this planet for over half a century. You’re free to believe whatever you like about the true nature of autism. But this is my stance (right now). If you disagree, write a better blog post and tell me about it. 🙂

Lately, I’ve come across a number of bloggers talking about how autism is more than just a “difference” for them. It’s a genuine disability. They suffer from it. They have family members who appear to suffer intensely from it. Autism is the source of tremendous pain and struggle for them and their loved-ones, and there is no way they’re ever going to sanction autism as a “difference”. It’s too disruptive a force in their lives, for that to ever happen.

I also had a brief exchange with someone last week who actively embraces the idea of autism as a disability, and they align themselves with the disability rights movement. They have the best of intentions, I believe, and from a philosophical point of view, I can agree with the value in doing that.

There are a lot of autistic people who are disabled. There’s a whole lot they cannot do, and my never be able to do, because of their issues and traits. I know a handful of autistic folks who wouldn’t last a day in the working world I inhabit. I’ve also known some autistic folks who do extremely well in my work environment, but struggled terribly with other issues.  Autism is no joking matter, when things are at their worst. I’ve been through the proverbial “wringer” many times, myself, and I have to continually make conscious choices for or against things, because of the effect I know they’ll have on me.

One day, I can be completely laid out by my issues. The next, those very same issues lift me to sublime heights. If I remove the causes of my pain, I remove the source of so much inspiration. It’s all a matter of degrees with me.

For the record, I don’t consider myself disabled. Yes, autism can be a disabling influence in my life, but its effects are temporary and mutable. It’s like being a sprinter who has to run a marathon, every single day of my life. My routine exhaustion and need to remove myself and recharge (lest I begin to implode from overwhelm and sensory overload) is conceptually no different for me than the results of a strenuous workout. Every day is strenuous for me. I’m constantly testing and pushing myself. Does that make me disabled? I don’t think so. It makes me different in ways that are more demanding than the average person experiences.

Is a thoroughbred racing horse disabled, because it can’t eat the same types of grains as other horses? Because it is so high-strung and hypersensitive that it develops inexplicable white spots on its legs? Is it disabled, because it’s temperamental and prone to outbursts? No. It’s a thoroughbred. It’s a unique and different kind of horse, and when it’s allowed to do what it does best, you’d never ask it to be anything different.

And I come back to it again, is autism itself THE disabling thing?

I’m not so sure. I mean, being autistic predisposes me to overwhelm, hyper-sensitive pain and discomfort, as well as the occasional meltdown/shutdown. Much like having fair skin predisposes you to getting sunburned, if you don’t use sunscreen. In the case of fair skin, the solution is not to change your skin, add more melatonin, or convince yourself the sunburn doesn’t really hurt. It’s to take steps to avoid sunburn.

And that’s where I see the medical model of autism going afoul of my autistic person. According to the medical model, autism itself (or in the above example, fair skin) is the root of the problem, and it needs to be eradicated. It’s a disorder. It’s a dysfunction. It’s an aberration that — for the sake of smoother functioning of society — needs to be changed in some way, if not gotten rid of entirely.

Classifying autism as a diagnosable disorder (and I’ll freely admit, the idea of diagnosis appeals to me, not because of the medical overtones, but because of the science — Science!cue Thomas Dolby) makes it a “thing” that needs to be fixed, that needs to be addressed. It removes it from me, as a person, and turns it into the cognitive-behavioral equivalent of a tumor, a mass, a growth of some kind. Maybe the “mass” is benign, for the most part. Maybe it just causes occasional discomfort. Or maybe it impinges on nerves and causes me unspeakable pain. In any case, it’s something separate and apart from me that arises from a physical cause and is addressed as a distinct (but disposable) aspect of my life experience. According to modern medicine, this condition, this disorder can (and should) be treated.

The thing is, it’s all more complicated than that. Yes, my body is differently “tuned”. Yes, there are experiences that others take for granted, which are unbearable to me. Yes, there are many aspects of my life which are physiologically uncomfortable, even painful, and depending on my state of body and mind, those aspects may be more or less extreme. But is a physical/medical approach the one and only approach I should take, when it comes to managing my situation?

Is changing the essential makeup of fair skin the only way to avoid sunburn?

Obviously (to me, anyway), there’s more to it. There should be more to it. Because what parts of life are ever that simple? Few, if any.

There’s the whole environmental thing. And the whole social thing. And the whole accommodations thing. And the whole pro-active self-care thing. There’s me taking care of myself, and there’s having other people to help watch out for me.  There’s my diet, there’s my exercise, there’s my social circle (or lack thereof). There’s my inner state, my outer circumstances, my interactions with the world around me… That all comes into play in an intricately interconnected dance, so that I cannot possibly ascribe to only the medical model as a way to explain and address my autistic experience(s).

It’s all very well and good to seek physiological explanations for why things are like they are with me. I tend to turn to biochemistry and neurobiology for explanations about why people behave like they do, and in some cases, they offer greater clarity. Certainly more quantifiable data.

But to look at those quantifiable data in and of themselves, with no connection to the outside world and the artificially created circumstances… that’s just asking for trouble.

Because then the problem originates in my system. It says there’s something wrong with ME, my physiology, my own personal context. It seems to absolve the outside world of any kind of credit or culpability and treats my system as a self-contained, hermetically sealed entity that has a mind of its own and does what it pleases… just ’cause it feels like messing with me.

To overlook the effects of environment, as well as human-made complications and challenges, does my physiology a disservice. It makes it sick. It makes ME sick. It makes us out to be disordered, in and of ourselves, rather than in relation to hostile circumstances.

Expecting me to just motor through life, carefree and happy-go-lucky, regardless of extenuating conditions is like, well, expecting a fair-skinned individual to walk across the Kalahari Desert without any cover-up or sunscreen, and not be sunburned. It’s like running a thoroughbred hard, putting them up wet, and then repeating the process again the next day — or that very same afternoon — and doing it again. And again.

So, that’s my “take” on the medical model, as it applies to me. I’m sure I’ve missed some important nuances, and I am probably over-simplifying things, here and there. Or maybe I haven’t, and I’m spot on, all across the board.

Bottom line: the medical model may work for some things. But my autistic nature and experience? Nope. Doesn’t do the job on its own.

And I’m sick and tired of being treated like I’m sick and it’s all my (and my autism’s) fault.

Mission accomplished – now I get to go home again

sunrise over a mountain with a barn and field in the foregroundI wrote this yesterday morning, then my day got busy, and I had to get myself home. I’m home now – and very glad of it.

22 June, 2017

So, the trip has actually turned out okay in the end. This actually isn’t a surprise, because that’s always how it happens. The thing is, it’s so damned costly, in terms of energy, attention, peace of mind, etc.

I’d do this more often, but that’s like saying, “Oh, I’ll eat cheesecake for every meal!” or “I think I’ll spend every penny in my bank account on a regular basis — drain my coffers as soon as they start to fill up — and see how that works out.”

Short-term, it’s fun and exciting. Long-term, it’s absolutely brutal. And for the record, it makes no difference whether the expenditure is on something fun and uplifting, or something miserable and obligatory. It’s all expenditure. And now I’m looking at another couple of weeks of recovery… I just need to take it easy for the next while.

I’m glad I came, though. I made some good connections with actual peers. I work in pretty much of a bubble at work. Due to staffing cuts, I’m the only one in my “group” who does my kind of work. There are others who sorta kinda handle the same stuff I do, but I’m “an army of one” in my particular domain. It has its advantages, but it can also be isolating.

I’m running out of energy to keep writing, so I’ll leave it at that.

It was good to connect with others — and in my own very autistic way, actually. I had a few “bumpy” experiences at the start, and I began to feel down on myself about it. But I decided to ignore my sense of social failure — it could be wrong, after all, given my sometimes acute alexithymia which gets very confused about what’s really going on and how I’m really feeling.

In the end, it was a good idea to ignore my sense of social ineptitude, and just keep going. I ended up making some good connections, and I got some good information. And for that, I’m grateful.

Now I’m home again. And very grateful for that. Now, to get back to my regular routine, and my regular life.

It’s a beautiful day today.

This afternoon and tomorrow I get to be myself

girl walking down forest pathI can feel the relief just about to break. This is the last day of my conference, and after 2 days of super-saturation — no, make that 3 — I’m more than ready to turn tail and run home. It’s Wednesday. The last day of this professional networking extravaganza. The last day of alternating between making the best of things and making a run for it.

Seriously, how do people do this? Oh, I know — they’re neurotypical. And they drink. That’s how they do it. I don’t qualify as either of those, so…

I’m too tired to elaborate.

Anyway, the whole thing is over by 2:00 today. Then I get to be myself. Sigh. I get to hang out with people who live here, wander around some of my old “haunts” (I used to live in this area, over 20 years ago), and see how things have changed. I’ll go for a long walk down at the waterfront. Have some dinner… Just enjoy myself. Then, tomorrow, I get to hang out with a friend whom I haven’t seen in something like 20 years. We used to be close. We used to work together a lot. It was a great time, but she’s here, and my partner and I are on the other side of the country, so…

Anyway, it’s just about time for breakfast. I nearly missed it yesterday, because I didn’t read the program schedule properly. I’ve been to plenty of these conferences, but for some reason I missed that whole breakfast thing. Not today. I’m hungry. I need fortification. And according to my internal clock, it’s nearly time for my lunch. So, better get a move on. Get my shower, get myself dressed, and head on over to the excitement.

I’m just so looking forward to this all being done. So, I can go back to my regular life and not have to worry about all this … stuff. Just to be able to relax, to not be “on” all the time, and chill out. Stim a bit. Talk to myself a bit. Wear the clothes that I want to wear, and be done with it. Just be done.

And then… go home.

Sweet relief.

They get some, I get some, the situation gets some

telephone- ole with lots of connectionsI have a little under half an hour, till I need to get on a conference call with my work. I’m traveling this week, with a user conference on the other side of the country – literally. My sleeping schedule is pretty much thrown off — for here, that is. My body is still keeping with the time zone it’s used to, so I’m waking up at 4:30 a.m. instead of 7:30. And I’m ready for bed by 8.

I haven’t been doing a very good job of getting to bed by 8, but at least I haven’t gone much past 10:00. That’s some victory. I’m pretty much resigned to the fact of being “dog tired” all this week, and I’m living accordingly. Not expecting much of myself in loud and busy situations, not expecting myself to be able to sustain attention for more than an hour at a time.

Yesterday I was in an all-day training which wasn’t very well designed. So, it was hard to pay attention, especially during 2-hour blocks of time. I kept losing my place, then catching up… spikes and troughs, peaks and valleys. Just like me. Plus, my boss was messaging me during some of the presentation, so my attention was divided several times. By the end of the day, I was wiped out.

But (of course) they had a reception at the end of the day. Two hours of milling around with people who were drinking and becoming progressively louder. Incredibly awkward. For me, anyway. I can’t stand those kinds of things, but to me, it’s obligatory, because that’s where people are “relaxed” (after getting a few drinks in them), so they feel more comfortable opening up.

Not a good use of time for me. Pure obligation. I was so… challenged, last night. I was tired. So, so tired. Overwhelmed. Super-saturated. Couldn’t hear properly. Couldn’t talk smoothly. Couldn’t interact the way I wanted to. I worked overtime to compensate with my deliberate (feigned) curiosity about other people’s lives, got stuck in a fewe extended monologues on things that mattered to me (of course they were fascinating! 😉 ), and mumbling and bumbling when put on the spot. I seriously cannot put words together when I’m tired, can’t hear, and a group of people (who were seamlessly talking about themselves and their lives just a minute before) turn to me and say, “What about you?”

Ugh. It’s just not my skill. Sometimes I can do it, other times not. Last night, I couldn’t. Oh, well.

I was supposed to go to dinner with a “select group” of attendees who were hand-picked to talk about some special aspect of this special technology. And I was totally going to go. I had agreed to go, so my system told me, Go. When you commit to something — especially when you’ve accepted a gift that’s kind of an honor — you follow through. So, I was going to do the right thing and stick with my Plan.

But when I got back to my room to wash up and change, I thought, “What the hell am I thinking? I can’t deal with those people now! Especially after they’ve had a few drinks in them.” People tend to get louder, when they’re drinking, and my hearing was not up to par. I felt like I was swimming under water, and everything around me was muffled, dampened, without clear, distinguishable sounds. Plus, when I can’t hear, I have to get close to people to distinguish their words, and that either makes them uncomfortable, or it gives them “the wrong idea” and they seem to think I’m interested in them. When I’m listening intently, I can be very interactive, and I’ve noticed that with me, it elicits an uncomfortable “vibe”, and with women, they seem to draw away from me.

I don’t mean anything by it. I’m just trying to hear what they’re saying and understand what they mean. I’m not looking for a date. But apparently, that’s what people do on business trips? I’ve heard about something like that… Not me, though. Nope. No thanks. Infidelity is not for me.

So, instead of going to dinner with the crowd, I went to dinner by myself. It was very nice. I got to a restaurant that a friend recommended. And I’m going to leave my options open tonight, in terms of what I do. There’s a customer appreciation event after the conference today, so I’ll go for a little while. But I can’t stay late. I’ll set some alarms for myself, so I look like I’m getting a message or a text.  Then I can excuse myself. And retreat.

I don’t expect to be as wiped out tonight as I was yesterday, though. Today and tomorrow, the conference will be at a pace I’m more comfortable with — a keynote opening with speakers selling an hour-long burst of information download, followed by a short break to catch my breath, then another info download, a break, more info… lunch… more info… break… more info… then the event.

After tonight, I’m “off the hook” for all that socializing. The conference ends tomorrow afternoon, then I’m staying in town till Thursday, so I can catch up with friends I haven’t seen in 20-some years. Fun! And it’s my pace.

So, in the grand scheme of things, everybody gets their “piece” of my energy and attention. The event itself, the people I’m with, the dynamics we have, and me. Last but certainly not least — me.