Getting back to what restores me

code on a computer screen with garden image behind itI’ve had the most wonderful weekend! It was an amazing balance of activity and rest, of hope and self-determination, and laying the groundwork for new beginnings, all around.

I was supposed to spend Saturday driving family and friends to a memorial service for one my partner’s friends who passed away. But it was so hot, my partner didn’t think it was safe to be out in the heat. She doesn’t handle heat well, and she didn’t want to end up sick — which is what happens if she gets overheated. Plus, I couldn’t stay for the event. I’m no good in crowds of strangers who love to hug each other and look searchingly into each others’ eyes. That’s what that group love to do — no thank you. I just couldn’t do it, and she understood.

On top of it all, I would have been dropping her off at the event, then coming to pick her up later, so that didn’t help her anxiety. At all. Nope. No way. Not gonna happen. She cancelled her promise to appear, and that was that.

As a result, I had an actual weekend. If I’d made that trip, I would have been exhausted on Sunday, and that’s no good. I wouldn’t have had a weekend at all. And I wouldn’t have gotten all the things done that I want to get done.

I have a lot of them.

  • Gardening(!)
  • Reading and watching videos about a new kind of astrology I discovered, which answers a lot of questions I’ve had over the years. It fits me so much better.
  • Drafting some writing pieces I’m working on.
  • Coding up a new app I’ve had going for a few months, now.
  • Taking care of assorted chores I let go over the past several weeks.
  • Resting and thinking about where I really want my life to go.

I spent a whole lot of time in my garden, turning over a new plot I was given. Three hours on Saturday morning, and another three hours on Sunday morning. It was too hot to do anything after 9:30 a.m., so I got out there early, both days — about 6 a.m. And I had the garden to myself for a while. Peace and quiet. No conversations. Just me and my shovel and the weeds sunk persistently in the earth.

Spreading the last of the dried alpaca manure on the newly turned-over section. Removing grasses and various invaders from around the peas, tomatoes, bell peppers, beans, carrots, and celery. Checking on the beets and Brussels sprouts, waiting for carrots to appear. Putting in mounds for my cucumbers and seeding and watering them. Weeds on the weed pile, which then got carted to the compost bins. Return trip with the wheelbarrow full of wood chips to put down on the paths between my plots. Lots of work. Lots of weeding. Hauling water, too, so my “babies” get their drink. There are two pumps, so I have to pump and carry it myself, which is fine. Each plot needs its own watering can full. That makes eight trips. It’s fine. It gets easier, each time I go there.

I also harvested lettuce and the first sugar snap peas and little yellow tom-tom tomato of the year(!) All delicious, all alive, all life-giving. Such an awesome experience to have that actual food to eat. Without having to go to the store. Without the burden of knowing that store-bought food comes to me thanks to someone not getting paid a living wage, and countless trucks on the road burning diesel. I won’t call it “guilt-free”, just with a far lower carbon imprint and free of much of the moral residue the rest of my food comes with.

This is the first year I’ve ever been able to do this gardening. I’ve always had a job that required a commute, as well as daily appearance at the workplace. Being in the office every single day, as well as the drive to and from… it’s been an enormous drain on my energy and resources, and I’m surprised I’ve ever been able to do much of anything other than recover in my off-hours, to be honest. But I used to do a lot in my off-hours. Just not gardening. It was all reactive stuff that I did before — activities prompted by my partner, or things I had to do. Or things that eased my distress, like writing.

Nothing pro-active and self-determining, like gardening.

Now, though, I can work from home pretty much anytime I need to, and that’s great. It’s the one reason I stay with my job. Because I’m home, I can finish out the week without being completely destroyed.

And I have time and energy for other things, as well.

Like coding.

I started web development in 1995, when I wanted to publish my own work online without being blocked by editors. I’ve never been comfortable dealing with editors — egos are daunting for me, and I have a hard time communicating with people in general. It just doesn’t work. So, I needed a way to get my work out there, and the web seemed the perfect avenue. Fast-forward to 2010, when I decided to switch my career path to project management, so I could code my own projects on my own time and actually enjoy myself in the process. Corporate web development just depressed the living sh*t out of me, and I wanted to be free to code up what I wanted, the way I wanted.

Of course, things didn’t turn out exactly the way I expected — or wanted. I had a rough time transitioning to the people-focused role of project management… especially since the developers I was working with weren’t as skilled as I was, and they also didn’t have the work ethic I have. That seriously eroded any energy or enthusiasm I had for coding, and the daily commute just sucked the life out of me.

So, my dream of doing my own coding faded into the background. I’ve worked on a few projects, here and there, and some of them have been substantial — like my Autism/Aspergers Spot-Check Tool and the Auptima Press The Holiday Survival Autistic Stress Gauge, a free online tool to help you measure how you’re doing – and where you need help – during holiday seasons.

I haven’t been completely idle, coding-wise, but I haven’t fully committed to my coding the way I intended, those eight years ago.

Until now.

I’ve got another project “cooking”, which has me pretty excited, I have to say. It’s helping me get clear on where I want to put my attention, coding-wise. There are lot of choices of technologies and techniques, and that’s been the main thing that’s blocked me, along the way. Just not being sure what direction to go — what to learn next, what to focus on, where to invest my severely limited off-hours time and energy. This project is helping me get very, very clear about what I do — and don’t — want to do.

Plus, when I’m done with it, it’ll be a tasty little addition to my portfolio, which I need to update, now that I think of it.

So, that was my weekend. Gardening… working myself to a quivering heap… resting, getting my second wind… then sitting down to study and code for hours and hours of blissful focus and attention.

The more I think about it, the more I realize I need to get back to coding. I may not be able to do it full-time (and I may not want to, since my wrists need frequent rest), but I crave that focus, that intensity of concentration. I just can’t get that with project and program management. Well, we’ll see how things shake out. I have time to study and learn and apply my skills and see where things take me. I’m not in a situation where I feel like I have to get out of here right now, or I’m going to die! I’m fairly secure, job-wise. And I know I need to change. So, I’m using the time to work towards that.

One thing at a time.

One step at a time.

One day… week… month at a time.

I’ll get there. Piecing my life together, bit by bit, I’ll get there.

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About that Walk…

girl walking in the woods

I was supposed to walk, this past weekend. Every single day of my three-day weekend. It was supposed to be glorious. Delightful. Indulgent. Quelle luxe! And inevitable.

That’s what I do on long weekends, when everybody’s off work on a Monday, and things are quiet around town. Families head north to the lakes and mountains for the federal holiday. Those who stay behind either head out to Lowes and Home Depot to pick up supplies for their gardening and home improvement projects, or they throw the kayaks on the roof racks of their SUVs and head to the nearest rivers. They run. Cycle. Hop on their Harleys and roar down the open roads. People scatter on those weekends, and that keeps me close to home.

I have my walking routine down, based on years of experience. Preparation is simple, straightforward. Practical. I change into my favorite walking clothes: a pair of baggy, ripped-up cargo shorts with enough pockets to comfortably hold keys and phone and tissues and earbuds and bug netting and a few pieces of candy… with a soft blue-green t-shirt worn over an even softer white undershirt… all of this over a comfortable sports bra and underwear that won’t chafe or bind. I hang a medical alert tag around my neck to make sure folks know whom to call if they find me collapsed by the side of the road, and there’s my trusty baseball cap pulled snugly on my head. And — at last — my sandals. It’s now warm enough to trade socks and lace-up walking shoes for those sturdy vibram soles strapped to my bare feet with velcro, leather, and some sort of finely netted fabric. I always know that summer is here when I can pull on my sandals. And I rejoice. I grab an apple from the fruit bowl, wash and wipe it dry, grab my small set of keys and maybe a piece of candy or gum for later, and head for the back roads.

I had my routes all mapped out, for the three days. Nothing fancy. Just the usual. With extra time to do the full circuit. I’d head down the road for a mile, past the “McMansions” built on the high hill facing a breathtaking view to the west… careful round the bend at the convergence of three roads where people always take the turn too quickly… walk another two miles under thickening forest… turn left again and walk a quarter mile past the mix of old and new houses, farms and single-family dwellings with their neatly trimmed lawns… up a slight incline, across the secondary road that’s full of motorcycles and bicyclists when the weather is nice… trudge past the town line sign… and disappear down the horse-farm-lined road, where people are too busy working on their gardens or cars or property to notice me passing by. At the stop sign where the road “T”ed into another, I’d about-face and head home. Or I’d get adventurous, take a right and keep going, till so much time had passed that I had to turn around to get home before dark.

At last, after weeks of overwork hunched over a laptop for 10 hours at a stretch, I had enough time of my own to extend my route into an extended adventure — to find out what’s around the corner that’s normally my turnaround point. Enough time to keep going. Keep walking. Sunglasses would block the sun. A baseball cap would shade my eyes and keep the bugs off. And if the bugs got to be too much, I’d have my netting to pull on over my cap and at least keep them off my face and out of my nose and ears. I had three days off work. Time to rest. Time to relax. Time to walk.

Disappearing that way on weekends is one of the things that makes my weeks tolerable. It dissolves the work-week like nothing else. Walking. Just walking. Doing nothing “productive”. Not talking to anyone on my phone, not listening to music, not planning or executing or planning to execute. Not even dictating ideas that came to me along the way for use later on. Barely interacting with people as I passed. Socially isolated from passers-by in my apparent mission to Get Somewhere Soon.

My own little 21st Century heresy. Delicious.

I had it all planned.

And I almost made it.

Except, I didn’t.

Saturday morning found me gardening. The weather was perfect: cool and clear, with a breeze to keep the mosquitoes at bay. Originally, I thought I’d just stop by my community garden for a solitary, contemplative hour. I’d make sure the peas and beans were up, weed a little around the peppers and tomatoes, water the celery, then head home for a shower and a walk. I could do my errands later, after I got back from the road.

As it turned out, other gardeners were tending their plots at the shared space. So, of course we had to talk. Or rather, they had to talk, and I decided to oblige them. That was fine. They all seemed nice enough, and they needed to get to know me. It always surprises me when other people want that. Isn’t it obvious, I’m a wonderful, conscientious person who’s comfortable letting other people be who they are? Is it so hard to tell that I’m generous of spirit and non-judgmental, and people can relax around me, even if they’re not on their best behavior?

Apparently not. And it exhausts me, all these prerequisites for social interaction, as though any of us has the right to condemn another person for a quirk we don’t understand. To my Autistic mind, we should all simply let each other be, give each other space to be who and what we are, provided that we’re not harming anyone else. I don’t need other people’s approval, but others clearly need mine, and it’s so tiring, to convince them that either they already have it, or they really don’t need it from me, to begin with.

What is up with that? It makes no sense.

Figuring people out is an experience in extremes for me. Either I fail fantastically or get it right without even trying. The times when I fail, I am completely clueless about facial expressions, voice inflection, hints and mentions. I don’t pick up on conversational prompts, where I’m supposed to follow a statement with a question. If someone makes a statement, say, “It’s a beautiful day!”, then they make a statement. If it’s true, then no further discussion is needed. We’ve established it’s a beautiful day. And we can move on. To things like practical tips for keeping moths and slugs off my new plantings.

For that matter, I often don’t understand why people even bother stating the obvious. It’s confusing for me. Of course it’s a beautiful day! Water is wet. Wind blows. The earth spins. Big deal. Why in heaven’s name are they so excited about announcing the obvious? Then I have to remind myself that they’re probably socially insecure and they’re searching desperately for a topic of conversation that’s neutral, safe, non-controversial. So they can talk. So their voice vibrates their vocal chords, which stimulates their vagus nerve and soothes their fight-flight response. Some people have to talk, or they quiver with fear. I understand what it’s like to be constantly shaken, so I accommodate their need. And I convince myself to respond “Oh, yes! Just lovely! We’re so fortunate!” so we can have a few minutes of neutral sharing of something positive… and get on with our gardening.

Then again, I can sometimes pick up on other people’s natures right off, with that Autistic “sixth sense” that some of us have. I notice so much, at times, I don’t need to talk myself through the rationale of responding to inane observations. I don’t need to be psychic. Body language, pacing of words, shifting of weight, loudness of voice, personal space, facial expressions, eye contact, topics of conversation… it tells me more about them, than they probably want me to know. It comes in handy — and it sure would have helped, 40-some years ago when I was still learning.

They say Autistic people can’t “read” others. We have communication issues which are the most defining feature of Autism, they claim. Plain and simple.

I say, social interaction is never plain and simple. It’s an overwhelming embarrassment of riches for people like me — there’s so much personal / impersonal data to parse, and there are so many disconnects between what I observe and what people say it means about them, who can make sense of it all? If people simply acted and didn’t provide a running commentary about how they want to be perceived, it would be so much simpler.

So much simpler.

But nah – that wasn’t happening last Saturday morning. And four hours after I arrived, I was exhausted. I’d gotten to know seven of my co-gardeners, heard all about a dispute with the head gardener that one gentleman still resented, and I’d gotten a thorough introduction to the insecure overcompensation of the wife of the family who had the plot beside mine. All while, I did my best neurotypical impression — pro-active, friendly, outgoing, secure, experienced, invested in the community. Gung ho. I know how to do that. I was raised with community and gardening. I do an excellent impression of a seasoned, connected, all-organic caretaker of the earth.

And no one can hear me scream.

Sigh.

So much for my morning.

I walked out of the garden in a kind of stagger. It caught me as soon as I was past the garden gate and was able to drop the making act. The sun was hot. The mosquitoes were swarming. My head was swimming with all the interaction, along with a nagging sense that I’d said a few things wrong to people. Their intermittent sidelong looks told me I was veering off course, but damned if I could tell what I’d said or done that warranted the stink-eye. My mouth just kept going. Whatever you do, I tell myself often. Just stay in character. Carry on as though it’s all completely normal, and they’ll follow your lead. Just keep on keeping on. And I did. Like I usually do. Until I can’t.

Fortunately, I cleared the garden gate before I imploded. Lucky. Practiced. Shaking.

I drove home slowly, my head spinning, hands shaking, taking the long way back to avoid having to turn across dangerous lanes of oncoming traffic. No way could I go for my long road trek in this condition. Not on the back roads that are full of cyclists and power-walkers and drivers taking their classic convertibles for a spin while the weather is perfect. I’d have to have my wits about me, to get far enough down the road to disappear. And that wasn’t happening.

Not yet.

Run the errands. Eat lunch. Nap. I’ll walk later. That’s what I promised myself. And that’s what I did. Mostly. Mailed the package at the post office. Took the trash to the dump. Picked up some food at the farm stand down the road. Put stuff away around the house. Ate my lunch. Took my shower, then my nap.

But when I woke up, I was still shaky, and I just didn’t feel like going out on the roads. Not so late in the afternoon, when all the bugs were starting to come out en force. Bicyclists. Walkers. Joggers — sorry, runners. Drivers. And bugs.

No thank you. Tomorrow. I’d do it tomorrow, I promised myself.

And that’s what I’ve promised myself for weeks and months, now. I’ll take my walk after I get everything else done that needs doing. I’ll get out on the roads for a leisurely roam, once things are put in order at home. I want to. I really, really want to. With all my heart.

But it never seems to happen. At least, not the way I want, or even plan. The rest of my life demands my attention. Things have to get done, and if I don’t do them, no one else will. I don’t have the energy to explain to people how to do them properly — shopping and cooking and cleaning and gardening and making repairs around the house — and cleaning up after them is more tiring than doing those things myself. I’m tired, so tired, from the week’s work that’s so social, so “engaging”. I’m tired from keeping up, from working at not lagging, from all the role-playing and forced positivity that others reward so well. It’s the price I pay for inclusion. I pay the price directly, while it costs others indirectly, with my reduced ability to pretty much deal with anything. Anything at all.

Walking far enough to disappear… well, that’s become a luxury that my stingy, obligatory life doesn’t want to make room for, these days. Every now and then, I manage it… just a quick 20-minute walk in the morning, or a 10-minute stroll around the parking lot at work. But those long, meandering saunters… who knows when I’ll be able to do them next?

Something else will have to give, and that something shouldn’t necessarily be me. I’ll figure something out, of course. I always do.

If I can pass as neurotypical, I can do just about anything.

Stoic on the Spectrum: Consider how quickly all things are dissolved and resolved

arrows in all directionsToday’s brief note comes from from Marcus Aurelius’ Meditations

IX. Consider how quickly all things are dissolved and resolved

… the bodies and substances themselves, into the matter and substance of the world: and their memories into the general age and time of the world. Consider the nature of all worldly sensible things; of those especially, which either ensnare by pleasure, or for their irksomeness are dreadful, or for their outward lustre and show are in great esteem and request, how vile and contemptible, how base and corruptible, how destitute of all true life and being they are.

So, things come and go. Pain comes and goes. Energy and vigor come and go.

One day, I’m fine. The next, I’m pretty much disabled. That, too, comes and goes. And there’s really no way to predict how things will be. I’ve tried. Oh, how I’ve tried. Doesn’t work. Best thing is to just stay loose and roll with it, so to speak.

“Consider the nature of all worldly sensible things…” All of them are ultimately resolved. They, too, shall pass. And if I wait for that to happen before I go on with my life, I’ll never get anything done. I won’t have a life worth living.

So, today, as my bones ache and I have less feeling and coordination in my arms than usual, I’m easing into my day… Doing my exercises that ease the pain and increase movement, so I can at least do the bare minimum… drinking plenty of water… getting some good food in me… doing less of a workout, this morning, but a workout nonetheless. And reading.

Reading things I love, that lift me up and brighten my day.

That’s certainly something.

Here #IFixedIt – Ian McClure’s truly bizarre riff about #Autism

bored emoticon mehIt’s been a strange day. Apparently, an eminent psychologist went on about Autism in some pretty bizarre ways — all the more bizarre, because apparently he helps determine direction for agencies(?)

He repeatedly talks about “autism” like this — see the transcript here. And I couldn’t just sit back and not say anything. Seriously, conflating “autism” with environmental or sensory distress experienced by Autistic people is very mid-20th century. And it’s got to stop.

I’m on a “tear” about how we need to stop referring to environmental/sensory distress experienced by Autistic people as “Autism”. It’s not Autism. It’s the result of external circumstances hobbling us as Autistics.

Take a look at what he says below, and note just how nonsensical his ideas sound, when we consider them in the true light of the Autistic experience. Italic emphasis  is mine. For effect.

 

Ian McClure (IM): The question I am trying to ask here is does it help us when we are trying to work with autistic people in environmental or sensory distress to actually say maybe this person is emotionally stuck at the level of a two year old, just hold that (inaudible) in your head for a bit

IM: and ok so we are coming back in hopefully, we are coming back to this thing about egocentricity, now what I, I have been wondering about is, if we did think about autistic people in environmental or sensory distress as egocentric in the sense of a toddler and if we do remember this whole phenomenon of regression, emotional regression. That suggests that maybe there would be a process for a n autistic person in environmental or sensory distress, right at the beginning of their life, which was very stressful. Ok so I want you to just sort of entertain that idea in your head. We’ve got somebody that right at the beginning of their life, that something really stressful happened to them that means that they cannot move forwards from that emotional regression stage, from that egocentric phase, and so the question is what could that be? What I am wondering about is, is it possible, that autistic people who end up in environmental or sensory distress, in that first year of life, they are not much different to everybody else? Is that possible? And that what we have got is a situation where something happens in that first year of life which does then change the way that that infant is developing. Maybe environmental or sensory distress in a way is a social coordination disorder there’s something about the way that we coordinate ourselves socially, the cerebellum is doing that. We know that autistic people in environmental or sensory distress often have difficulties with these systems but we don’t really know why. Maybe it goes back again to something to do with maybe two different human species came together and what you’ve got is a genetic mess that isn’t quite right, that something is not quite right.

IM: So I am wondering about whether we should think about the idea of what I call a kind of internal exponential trauma caused by the sensory and the neurological challenges in the brain of the autistic person in environmental or sensory distress one of the reason I am so keen on this idea is, this idea which I think a lot of us have who work with autistic people in environmental or sensory distress, is that somewhere inside that person is a, dare I say it, normal person and this is the experience of parents, the desperation (inaudible) is I know there’s somebody in there if I could only just get at them and reach them. Now I know that that has been dissed a lot and people say oh you’ve got to move on from that, that’s just emotional, you know, it’s just the emotional (inaudible)

….

IM: Maybe we need to go right back to what people like Freud and Bleuler and Kraepelin and have a look again at what they were thinking because what happened in the 1950s was that whole thing got chucked out and DSM and so on and all these other things are just not interested in it. And the way it is going forward now is that the research that is being done by psychiatrists by academic psychiatirsts in places like London and America and stuff like that is very focused on looking for drugs. They are looking for drugs to answer these behavioural differences, and that is what they are doing they’ve got this magic bullet idea, if we can get a drug for that just think how much money we can make. And that’s a big motivator. And I know I am sounding very cynical but I’m afraid, you know, that’s going on.

IM: Ok so I am just going to summarise, In environmental or sensory distress my experiences as a clinician has been that the thing that is really challenging is this own agenda behaviour, that’s not in anyway minimising all the other stuff, but what it boils down to is time after time you know in the clinic this person is causing havoc because they won’t give up on their agenda. So then I started to think, could that be about egocentricity? And then I started to think, hmm, what about, what about something has gone wrong that has meant that that person has got stuck in the egocentric phase. Does that help us, think about it? what could that be? What could that be? If that was true, what could it be? We’ve got clues, we know that autistic people in environmental or sensory distress are in some way experiencing the world differently and that can be incredibly distressing for them. We don’t know a lot about it but we’ve got some clues and could that be enough as an internal stressor and are we having possibly a traumatic encounter there which is exponential because of the massive development that is taking place in the first year of life.

Anon (Name to be added if they give permission): My name is (deleted), I am a clinical psychologist and Ive spent most of my working life asking autistic people in environmental or sensory distress what they think and feel, I’m also neurodevelopmentally challenged myself and I really found thinking of myself as a different species and a genetic mess, I’m also a mother of a son who is a genetic mess, if we don’t have autistic people in environmental or sensory distress and people with dyspraxia and dyslexia and adhd in our society then it would be much less rich. The reason that those things were thrown out many many years ago is that they were wring. And to start to move back to things like refrigerator mother and prevention of environmental or sensory distress, I think is not appropriate.

(Lots of applause)

IM: Shall I respond?

IM: I never said anything about refrigerator mothers and I acknowledge that that was a dangerous area that went, you know, clearly wrong but I think it is great that I have had this response actually, because I think it is important to get a reaction like that and I’m pleased that you have reacted like that. All I am doing here is asking questions, I don’t know the answers to these questions. What I am trying to do is I am trying to make sure that we don’t get stuck in a silo mentality, I want us to keep our eyes open about environmental or sensory distress and I do not mean to cause any offence by saying the things I have said but it’s a free country, last time I checked it’s a free country and we are allowed to say what we think and I am basing this on my experience with my patients over twenty years so you know that is just my experience. I am worried that these people are being traumatised by something that is going on in side their minds, that’s all I’m trying to say to you, so thanks a lot (applause)

So, yeah… If you look at Autism just as something that occurs in the brain, you get these kinds of ideas.

But if you understand Autism as something that shapes your every experience in a physical, mental, emotional, and spiritual way (with an emphasis on the physical which can lead to a ton of distress), that changes it, doesn’t it?

It changes everything.

Which is where I’m hoping the Autism research community goes. Away from the “egocentricity” idea. Away from the “own agenda” concept. Away from the belief that meltdowns are “tantrums” which we choose to leverage to get our own way. “Creating havoc” and all that.

The good part is that people are speaking up about this.

The bad part, is that we have to.

 

Sickness and lameness and hindrance, oh my…

grid of four people rolling stones up hills
Just keep going. Just keep working.

My stoic meditation of the day comes from The Enchiridion By Epictetus

9. Sickness is a hindrance to the body, but not to your ability to choose, unless that is your choice. Lameness is a hindrance to the leg, but not to your ability to choose. Say this to yourself with regard to everything that happens, then you will see such obstacles as hindrances to something else, but not to yourself.

10. With every accident, ask yourself what abilities you have for making a proper use of it. If you see an attractive person, you will find that self-restraint is the ability you have against your desire. If you are in pain, you will find fortitude. If you hear unpleasant language, you will find patience. And thus habituated, the appearances of things will not hurry you away along with them.

Indeed. I tend to lose sight of the fact that all my sensitivities don’t prevent me from choosing what to do with my life, and finding ways to deal with them. The simple fact of my life, which is my guiding principle, is that if I can identify that something is a problem for me, and I know what alternative I want in its place, then it’s incumbent upon me to do something about it.

I’m pretty resourceful, when it comes down to it, so I can’t very well make excuses for my life going the way it has, when I’m actually capable of A) seeing when I’m going off the rails, and B) coming up with alternatives.

Now, certainly, it’s no fun to have to constantly navigate a world that’s designed for people completely unlike me. But one of the reasons I left my parents’ house and took off on my own, was precisely because I knew that out there in the world, I could fashion my own environment that suited me. I know what bothers me, I know what makes my life difficult. And with that knowledge, I can design a life that works for me.

Of course, not everything is going to be suited to my liking all the time. But so what? The times when things are extremely challenging, are the times when I build up strength. Provided I give myself time and space to recover and assimilate all the lessons, the challenges just make me stronger. More resourceful. More determined. Maybe it’s just my character. Or maybe it’s because of how I was raised. Whatever the reason, when I look back at the worst times I went through, those were the most valuable lessons.

In some cases, you get what you pay for. And I’ve paid dearly, I can tell you that.

It’s all been worth it. Some of my experiences have felt like they tore me to shreds, but you know what? I’m still here.

So there.

And I’m going to stick around. There is no way I’m going to succumb to the dire predictions that I’ll die 20 years earlier than my non-autistic peers. That’s just ridiculous. We get to choose what we do with ourselves, what choices we make, what direction we take. And if I choose to do things that I know are not good for me — like avoiding certain foods because of the textures, but not supplementing my diet in other ways, or like avoiding exercise because I don’t have the energy — I have only myself to thank for vitamin deficiencies or poor physical condition.

Some magical being in the ethers isn’t going to descend to earth and save me from myself. If there are things I have to do, because the laws of physics and human anatomy require them, then one way or another, I’ll do them. It’s my choice. And I have the capacity for reason, discernment, to find alternatives, if one way doesn’t work for me.

So, with that said, it’s time to get on with my day. I find out what the deal is with my job — new paths are being charted for us at work, and the direction we’re taking actually makes a whole lot of sense for me.

Maybe I don’t have to leave my job, after all… Even so, I have a video interview for another position on Monday. It’s all a dynamic process.

Of course it is.

It’s life.

Something must be up in the world… but I wouldn’t know.

man in a boat on a lake with mountains in the backgroundWow – people are on a tear tonight.

All kinds of feisty, racing around, slamming into each other… the cops are out en force, and I’ve seen plenty of people pulled over, sometimes with lots of extra emergency vehicles around them.

Traffic on the way home was crazy tonight, with people flying all up in each others’ tail-lights, beeping, roaring… you name it. And this is even more than usual.

Something must be up in the world.

But you know what? It’s been 2 days since I looked at the news, and I have no idea what bees might be in their bonnets. Nor do I care. I mean, I care, but not so much that I’m willing to sacrifice my own well-being for others.

And I realize, that’s what I’ve been doing, lo, these many years that I’ve been paying attention to what other people do in the public arena. What a poor use of time. It’s useful to keep in touch with who votes in my favor, and it’s a good idea to participate in positive change. But all this other… crap that’s all over the news… yeah, it just doesn’t make sense to follow any of it.

Especially when nothing really seems to change much, even after all the upheaval and drama. There are so many other more constructive uses for my time and energy, than “following” the antics of people who are all into the drama for drama’s sake.

Me? I want to actually accomplish something.

So, I do. I’ve been reading a lot, lately. Spending far less time online. Chillin’. And it’s good.

Have a lovely evening — or day, if you’re reading this in the morning.

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.

It’s easier if people aren’t nice to me

Man Thinking, Looking Out Over Foggy Harbor - Photo by Phoebe Dill on Unsplash
Photo by Phoebe Dill on Unsplash

This is going to sound strange, but it’s actually easier for me, when people aren’t nice to me.

When they don’t say and do nice things for me, befriending me, and so forth.

I find it confusing. And the reciprocity thing makes my head feel like it’s spinning.

And I’m going to get it wrong.

Either I’ll get too close, too fast, or I’ll keep my distance when I’m not supposed to.

They’ll expect me to hug them. And that’s no good. I’m a terrible hugger, objectively speaking. I don’t know how to get the right pressure, and I always seem to dig my chin into the other person’s shoulder, which is a weirdly intimate thing to do, when I think about it.

They will say things and expect me to respond in kind. But my brain doesn’t work at their same speed, so I’ll end up saying something stupid or coarse or reflexive that’s unconsciously meant to push them away.

It’s better, if people aren’t nice to me.

That’s not to say I don’t like people. I do! I really enjoy their company, and I like to spend time chatting about things that interest us. Even the dreaded small-talk is fun for me, at times. Banter. Witty banter. Laughs. Ha-ha-ha. 😀

But other than superficial fun times, I prefer that people are objective and a little cold towards me. Matter-of-fact. Because facts really matter a lot to me, and it’s more important for me to handle things in the correct manner, than it is for me to “exchange energies” with potentially needy others.

I don’t mind the chill. I prefer it, in fact.

Just don’t be rude.

Rudeness I cannot countenance. Standoffishness, yes. But rudeness, no.

And that’s what I have to say about that tonight.

Whoah – now *this* is a welcome change!

autism journal cover before after showing old puzzle piece and new circles motif

So, this is refreshing!

It’s not everyday we #ActuallyAutistic folx get some good news, especially from within the realm of research. But it’s a new year, and it appears that — somewhere, somehow — people have been listening. And what’s more, they’re willing to act.

But lo and behold, this is exactly what’s happened. Just got the news yesterday from the journal Autism:

A new era for autism research, and for our journal

… autism research is a shared endeavour. Precisely because it is a common endeavour, autism research requires the participation of that broad community on fair terms. It is not right that one group holds all of the influence and power. If any group, or collection of groups is unattended or their opinions discounted, then they are being treated unfairly and in a way that does damage to autism research itself. The core ethos of this journal must include ensuring that everyone who participates in autism research has their views taken into account.

This takes us, of course, to the symbol that used to occupy the cover of this journal – the puzzle piece. Others have written at length about the history of that symbol, how it was initially deployed by the UK’s National Autistic Society (NAS) in 1963, and how it has become increasingly controversial as the years have progressed (Grinker and Mandell, 2015; see also Gernsbacher et al., 2017). But what has become much clearer recently is that autistic selfadvocates and many who support them have not only felt that the puzzle piece does not capture their view of autism itself, but that the failure of organisations such as this journal to act in response constitutes a core disrespect, as if their voices and opinions did not matter equally to other people’s (Brook, 2016).

Oh, my… I’m feeling a little choked up, actually. The fact that people in positions of influence have actually been listening… and have taken substantive, public action… that’s huge.

What’s more, the new design makes total sense. They say they developed the design with input from Autistic people, which in itself is amazing. And the red circles — overlapping, yet separate, similar yet slightly different… that pretty much says it all to me.

Plus, no blue. #Redinstead. Always a nice change.

So, I’m feeling like I can breathe a little easier. Not until I saw the new design, did I realize just how I hold my breath and brace for a conceptual … infringement… whenever I encounter official outlets for Autism research and thinking. Even with publishers and organizations who are very much “on our side”, I brace myself, every time I read their tweets or publications. I’m always on the defensive with the official outlets, no matter how well-intentioned they are. Because they so often just don’t get it… and I have to go to considerable lengths to rectify everything in my mind and convince myself — yet again — that they are not the enemy, they just don’t get it 100%… yet… and they’re trying.

Of course, the bulk of the conceptual work is on my shoulders, because I’m in the minority and on the receiving end. I don’t have the time and leisure and money and stature to do much of anything about it. Me taking the giants of the Autism industry to task about their unwitting slights and oversights, is like piloting a jet-ski through an iceberg field, trying to avoid the chunks of floating ice out of the way so I don’t wreck on them… as well as trying to nudge them out of the way, so others less speedy and attentive than I don’t run into them and wreck themselves.

The peril of poor word choices and dismissive language, I feel, is so much more severe for Autistic individuals, because we can experience language so viscerally, so physically, so deeply. Handing over Autism vocabulary to non-autistics, is a little like handing a gangly teenager a razor-sharp katana. They just don’t have the coordination and maturity to handle it well. And somebody’s gonna get hurt. Of course, the person wielding the weapon(s) isn’t going to suffer. They won’t feel a thing, when they draw blood from others.

And that’s precisely the problem. Because, well… double-empathy. Yet again.

For a less gruesome comparison, how ’bout this — asking non-autistics to research and address Autism on their own, is like asking a color-blind person to pick out a coordinated outfit out of your wardrobe of colorful prints for your big job interview. Nothing against the color-blind person. They’re still valuable and valid as a human being. But you’re better off having someone who can detect a lot more colors in the spectrum, if you’re going to present your best for The Big Job.

Fortunately, it looks like things are shifting. Changing. With any luck, improving. Big thanks goes to the researchers who have been raising the alert about how … er, screwed up, er, incredibly deficient , er, lacking the old route has proven. And hey — how ’bout all these profoundly insightful Autistic adults who know firsthand what it’s like to actually BE Autistic… mightn’t they have something to contribute.

We might, indeed.

So, I’m supposed to be resting today. Reading. Taking a break. But hell, this is big news, and I’m not about to sit this one out, when there’s so much to be lauded about it.

I could go on for hours about how the circle motif makes SO . MUCH . MORE . SENSE. But I’ll leave that to another blog post, after I’ve regained my strength. I’m still struggling after last week. And on top of that, I had a big get-together with 16 very chatty friends (old and new) packed into a 10×10 foot space.

Can you say sensory overload? Uh… yup. I will definitely blog more about my experience of hearing seven simultaneous conversations at top volume for four hours… and my ensuing glee that I didn’t completely melt down in the  mist of it.

Oh, but I digress. Let the record simply show that I approve of this new direction that the journal Autism is taking. And I suspect a lot of other Autistic people like me do, as well.

Oh, except for those who hate it. We’ll always have some of those 😉

Sharing from ‘Autism’: A new era for autism research, and for our journal

No more puzzle piece used on the cover of the journal 'Autism'

Big news – The journal Autism will no longer be using the puzzle piece on their cover.

Plus, they’re shifting their approach to research:

… Precisely because it is a common endeavour, autism research requires the participation of that broad community on fair terms. It is not right that one group holds all of the influence and power. If any group, or collection of groups is unattended or their opinions discounted, then they are being treated unfairly and in a way that does damage to autism research itself. The core ethos of this journal must include ensuring that everyone who participates in autism research has their views taken into account.

This, in my view, is huge.

And it’s a welcome change. I encourage you to read the whole announcement. It’s not long, but it’s chock-full of encouraging signs.

Read it by clicking here.