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.

 

 

Five-day business trip coming up – pros and cons and #autistic preparation

view of city street with people milling around

So, I’m flying across the country for a business trip. It’s a user conference for a new technology I’m helping to implement at work. The application is on the leading edge of its field, so this is a good opportunity to “peek under the hood” and see what all is there.

It might also be a good opportunity to connect with other people in my field… to see about jobs… I’m treating this like an extended job interview of sorts.

I’m both dreading this trip and looking forward to it. My partner can’t come with me 😦  and I hate traveling without her. She hates it, too, but it just wasn’t going to work, this time.

On the upside, I’m the only one from my work group traveling. Usually, for my business trips, I usually get stuck traveling with my co-workers. It seems to calm them down to move as one group, but I find it a source of irritation. I’d much rather move at my own pace, on my own time, and not be subjected to their non-stop inanity. Seriously, how much blather can a person stand? Apparently, they can stand a lot. And it’s not blather to them, for some strange reason.

Well, that’s not going to be my problem, this trip.

I’ve been preparing in fits and starts. I made my list today — and a very long list it was. Had to turn it into two columns for it to fit on the 4×6″ lined stickie note. I’ve done the vast majority of the things, with a handful of more involved stuff still pending. I’ve got a handful of things I need to do in the morning, too, before I leave at 6:30 a.m. It’ll get done. I just need to make sure I’m up early enough to do everything and not make myself more frantic than necessary.

Well, I’ve gotten plenty of practice at this, so far, this year. This is my 4th flight in 6 months. I flew out to Texas in January and March, then flew to Atlanta in May, and now it’s off to California in June. I’m hoping I’ll find another job before I have to make another trip, but I may need to fly out to Texas again before the summer is over. I’ve learned a lot about how to breeze through all those lines… checking in online, packing super-light (so I don’t have to check a bag)… wearing the proper clothes to quickly and easily slip in and out of shoes and jackets in the security line… figuring out how to get around airports, figuring out public transit, taxis, etc.

Business travel is always so grueling for me, but I do it.  I could probably become an expert at it (actually, in the past, I was approaching expertise, when I had to fly to France all the time). But it still wipes me out and destroys my peace of mind, equilibrium (literally – I get very dizzy and vertigo-y), and it burns up all kinds of resources I need for other things. Especially when I’m traveling for business. I need to be at my best. I’m in unfamiliar settings, dealing with other people who are unfamiliar to me, as well. I can’t stop the steady stream of intrusive thoughts and concerns. Will I mess up? Will I blurt something out? Will I make a fool of myself, or appear untrustworthy or unprofessional?

These are not unwarranted concerns. I’ve done it before, and I may do it again. Just handling those thoughts and managing my anxiety adds a whole other layer of difficulty to it.

I would love to say, “Well, I’m all grown up now, so I’ll just suck it up and do my job.” But there’s more to it than that. And frankly, being autistic and not having a lot of models or examples from others to follow doesn’t help. If anything, it just makes it all worse. Because I should be pleased with having an all-expenses paid trip to San Francisco. Because I should be excited to see the sights and hob-nob with other industry leaders. I should be looking forward to the change of pace.

But I’m not. Not at all. I do feel some of those things, but more than that… just a steady sense of dread. Dread. More dread.

Well, I can’t keep dwelling on that. I need to get ready for the trip. Take care of business. Make some calls. Get a few logistical issues settled. And get to bed early. I’ll have 8+ hours to myself tomorrow, which will be lovely. It will give me time to review the proof copy of my sensory overload memoir that I’ve written and plan to release later this summer. It’s not every day I have that much time to myself, but tomorrow I will. So, that’s good.

Bottom line, I’ll do what I need to, and I’ll try to keep balanced — and focus on the good that may come out of this. It’s just a lot to process, but it’s not all bad.

I’ve done this before. I survived. I’ll do it again.

And when all is said and done, it’ll be more experience for the record.

What does it mean for me to be truly #autistic?

person jumping off a train in a foggy night
Leaving the “regular” world behind can be such a relief. Here I go… into the woods 🙂

I’ve been doing a lot of thinking about how my dreams and ambitions have really suffered and been stunted, because I’ve felt compelled to pursue them along neurotypical lines. I’ve somehow believed that if I followed “the rules” — of engagement, of customary behavior, of social interactions, of the right job or locale — that things would come together for me, and I would be able to follow my dreams as naturally as everyone else outside the autism spectrum follows theirs.

I thought I could go to college, and everything would be fine. I thought I could get a regular job and things would sort themselves out. I believed that if I moved into a certain neighborhood in a certain town, that would confer certain advantages upon me. I was convinced that if I just did a great impression of others, I could connect with them and find a sense of belonging. My family (bless their Aspie hearts) raised me with a strict set of guidelines that were supposedly guaranteed to provide me with a sense of community and connectedness. If you live in their world and do precisely as you’re told, it works. I’ve seen it work for countless people I grew up with, including my family.

Except… I don’t live there, anymore. I never wanted to live there, in the first place. Their Aspie-ness is diametrically opposed to my own rendition. What is life for them, is death for me. We may all be on the spectrum, but I don’t inhabit their quadrant. And the things that bring me to life, really dampen theirs. So, I’ve had to move on.

But I’ve still carried this Aspie-fied devotion to figuring out HowThingsWork and then following that set of specifications to a “T”, in hopes of achieving the expected results in the neurotypical world I now frequent. It hasn’t worked nearly as well for me, as it has for others. In short, I’ve often lost sight of my autistic nature, and that’s limited me. It hasn’t provided me the kind of options and opportunities that non-autistic others have found. What works in one situation with a select group of people, doesn’t necessarily work for me.

Yes, I’ve overlooked myself. I’ve ignored my own individual ways and needs. I’ve discounted my own individual inclinations. And I haven’t made the most of my own individual proclivities. And yes, I’ve neglected developing my own individual skills and talents, which are nowhere near the radar of the NT world.

There’s a whole lot of me that isn’t acknowledged by the neurotypical world, including:

  • Extreme Empathy — which is so intense that it causes me to co-experience the full range of emotions of everyone around me, including (especially) the negative ones. That impassive presentation everyone sees… it’s a direct response to the emotional upheaval of my milieu. Somebody has to keep calm in the chaos and the storm. I can’t rely on anyone else to do it, so that role falls to me.
  • Profound Productivity — which lets me accomplish more in a weekend than most “regular” people do in a month. Or a year. I can’t even tell most people all the things I do with myself on a regular basis, because they become alarmed at how much I’m “taking on”. It’s not “taking” anything on. It’s simply letting myself be what and how and who I am. I flow. My work flows. The words flow. That’s how I roll.
  • Experience like they wouldn’t believe. Seriously, nobody outside the autism spectrum is gonna have a clue just how much experience I’ve accumulated over the years… what kind of experience I’ve had… what I’ve survived… what I’ve created… what I’ve incorporated into my world view. I’m not alone in that. Countless other autistics have done as much as me — and more. And what we assimilate isn’t this 2-dimensional mind-driven experience of the neurotypical world. It’s a full-spectrum, body-mind-heart-spirit inundation in the world of What It Means To Be Human. We have capacity for it. We take it in. Some of us can handle it, others can’t. But for autistic people like me, it’s inescapable.
  • Resilience, resilience, resilience. To the point where I can sufficiently “self-heal” from a devastating, debilitating meltdown to be reasonably functional in a matter of days. Yeah, I still feel the effects of it, and I’m still shaky for weeks after, but it doesn’t stop me from living my life. No how, no way. I’ve been roughed up and trampled and put through the proverbial wringer for 52 years, now, and it’s taught me a thing or two about how to take care of myself. If I hadn’t figured that out, I wouldn’t still be here. You’re reading this, so I’m still here (by god). And I will continue to be here for the long term.
  • Pain tolerance / indifference of many kinds. “Life is pain! Get used to it!” said Geena Davis’s character in the movie “Long Kiss Goodnight”. And it’s true. My life is chock-full of pain… not that it’s going to stop me. Pain schmain. Life isn’t waiting for me to feel better. It’s not going to pause for me to climb on its metaphorical merry-go-round. Physical pain. Emotional pain. Spiritual pain. Mental pain. Just living in the NT-centric world is an exercise in extreme discomfort. It can be debilitating. It’s definitely disabling. And at the same time that I’ve learned how to handle the pain, I’ve learned how to negotiate my way out of it…. to create a separate space for myself, where I can simply be. See the next point:
  • Independence of mind, spirit, body. I’m on my own — and as an autistic adult, that’s precisely how I like it. Autism is Self-ism. I know there are people out there who would like to help me. They offer. One of them offered just yesterday. But honestly, it’s pretty stressful trying to communicate with them… to express my needs in ways that they can actually understand and act on. Ultimately, it becomes more frustrating than anything else. Managing others is just one more thing I have to do. And I don’t enjoy it. I’d much rather handle things on my own, thank you very much.

To the non-autistics in my current world, those skills / traits / qualities / talents don’t even exist. According to them, they can’t. Because they don’t conform to their way of experiencing things. By allistic standards, they’re often considered pathological.  And that attitude gets a little tiring. Because nothing could be farther from the truth. Seriously. Nothing.

 

Thank God I’m autistic. Praise be.

Because all the things that the neurotypical world considers liabilities are extreme strengths with me. And my sh*tty experiences with non-autistic folks have taught me loads about how to just be true to myself. It’s been a master class in just walking away from a losing proposition and creating a separate reality for myself. I’ve always done that. I always will. So long as there are people who A) don’t understand me and B) feel the need to punish me for not being transparent / energetically available to them, I’ll keep my own interior space well-organized, clean, tidy, and extremely well-appointed. Like so:

  • I bought myself a new bookcase last month. This month I’m rearranging my study, so I have a proper retreat that suits me ideally.
  • I’m not driving in to the office today. I need the extra hour I’ll save by not doing that, to take care of myself and tend to my own interests. I also need a break from their needy dramas.
  • I’m getting some extra rest today, along with getting a massage this evening.
  • I’m cooking my favorite meal, tonight, letting it stew in its savory goodness that feeds my soul as much as my body.
  • I’m spending more time working on my book about an extremely autistic hyper-sensory day.
  • I’m dropping some of my near-future plans, because they would demand more time, energy, and money than I’m prepared to spend… and the payoff wouldn’t necessarily justify the expenses.
  • I’m widening my inner world, and relishing the pace and the flow that is mine, and mine alone.

All these things are mine. Truly mine. There’s much more, but I’m bumping up against my personal blog post limit, and I need to move on to other things. To be truly autistic, in my mind, is to be truly myself, to relish the strengths I have, the abilities I possess, and to make the most of every . danged . thing . that makes me the person I am. The autist I am. The supreme exemplar of me-ness that I can (and should) be.

In the face of a world that attacks what it doesn’t understand and punishes those who step outside their norms, I have a choice. I don’t have to conform. No way, no how. I can step away. I can create my own space. I can follow my own dreams, cultivate my own skills and abilities in ways that no neurotypical institution can recognize, let alone serve.

I can be true to myself, no matter what the rest of the world thinks or does.

That’s my right. Frankly, it’s my obligation. To do less would be such a waste.

Turning the corner into the blissful void :)

triangular skyscraper with blue sky and clouds behind it

Ha! I thought it was Saturday. (It’s actually Friday)

This short week has been so strange.

I had “off work” on Monday, but I had a massive meltdown, following four extremely arduous days with my in-laws (which included a mini-meltdown on Sunday).

I’ve been feeling pretty dismal all week, really “hungover” from the emotional flame-outs of Sunday and Monday, not entirely here, but still able to function really well at work. I guess that speaks volumes about how well I do when I’ve got hard-and-fast routine, and expectations are clearly stated for me. I’ve actually been doing much better at work, than at home.

Which is why I’m going into the office today.

Normally, I work from home on Fridays, but not today. I haven’t been able to swim at all this week, because of deadlines, sudden requirements popping up, things falling apart, and just not feeling up to making the short drive to the building where the pool is located. I’m feeling it, too. I really notice when I haven’t been swimming. I miss it, my body misses it, and the days become interminable and painful.

So, today — as I got all my wretched deadlines handled and “put to bed” last night — I have an easy day. An open day. A day full of … nothing specific. And that’s wonderful. Because I need room to breathe. Room to stretch. Room to just settle into my work, without constant interruption and aggravation, and get something done.

For the time being, anyway.

My job is very non-secure at this point in time. Supposedly, there are layoffs coming in another month or so, and it’s going to be “BIG”. Huh. Whatever. I have scrimped and saved and shaved down my costs of living, so I can save aggressively. And in the past 2 years, I’ve cobbled together six months’ worth of living expenses, which is regal, compared to where I’ve been for years. I mean, seriously, it’s been a loonnnnggg time since I’ve had this amount of money in the bank. Medical issues, job issues, terrible commutes that drained my coffers via my car’s fuel tank (and drained my physical energy as well), and just a long string of bad choices and unmanaged expenses from the pre-Aspie-awareness days… they really sucked the life out of me.

But in the past couple of years, I’ve been able to save (and save and save), and now I have enough money to float freely for six months — six months! And that’s being conservative. But it’s best to be conservative. Not doing that, is what got me in trouble in the past.

Anyway, the way things are at work, either I’m going to get promoted, or I’m going to get a severance package. A package or a promotion — how Aspie of my professional life. I literally have No Idea how I stand with other people, so I just make it up as I go along. And I’ve now reached a kind of  “Office Space” frame of mind, like the main character who sees how things are going with layoffs and decides, “Oh, fck it! I’m just going to play along and not give a sht about the consequences!”

It’s actually quite freeing, I have to say. I mean, I’ve always been so conscientious about my job performance. And for what? Please. I’ve been dragged by proverbial corporate horses for years and years, my foot stuck in the figurative stirrup as the Overlords have done as they pleased. That’s how it works. Anybody who thinks differently is in for a rude awakening. I look around me and see my coworkers all so invested in their jobs, their identity, their roles. Huh. How ’bout that. I can’t see the point. I can see the point of a paycheck, that’s for sure. And having a pool to swim in. That, too. But getting my identity all “interlaced” with this nonsense… yah, that just doesn’t make any sense anymore. At all.

So, whatever happens, happens. I’m going to let it play out. If I get laid off, I have six months’ worth of living expenses in the bank, sitting in a secured account. If I get promoted, that’s fine, too. Whatever. It’s all pretty much of a farce, anyway, which just gives me the freedom to write when and how and whatever I like, without needing to worry about editors and publishers blocking my path. I can schedule my life as I please, do the things I love to do, and hang out during the day with smart people who are also in the Paycheck Continuation Program, and would jump at the chance to go on vacation or spend more time with their kids.

Oh, yes… this is freeing indeed. It totally relieves me of the burden of illusions about what the corporate world is about, these days. It relieves me of the burden of feeling responsible for the Way Things Are, feeling responsible for things that are really out of my control, and feeling like I should be doing something to make everything better for myself and my household.

Nah. That glorious over-optimism is an artifact of my youth, my bright, shining, hopeful youth, when I had no idea how things were structured or organized. That youth has persisted over the years, and it has stayed with me until relatively recently… as has the rigid thinking that stuff is supposed to be A Certain Way, and it’s My Responsibility to make it That Way. Time to split the difference, cut my losses, just let the shtty things be shtty, and not worry about it. Just focus on what I can control and influence, and leave the rest.

One of the great things about my newly liquid financial situation, is that I have living proof that I can live comfortably at my current salary. I’d been thinking that I needed to trade up and make a better salary. Granted, more money would be nice. But the range I’m in right now has a lot more job possibilities in the market, than the higher rate, so I could keep going at this rate and still be relatively solid, money-wise. And I might actually be able to pay for some of the house repairs that are sorely needed.

Oh, all this thinking is getting too involved for me, now. I really need to just chill out and quit fretting about the future. How I’ll get by has been a constant, daily, nagging worry for me, for the past 10 years, which has worn me down.  I’m tired of that. I’ll be celebrating another birthday in another couple of weeks, and it’s true — when you get past 50, you start to get happier. At least that’s true for me.

After so many years of being miserable, driving myself and pushing myself towards MY GOALS, it’s time to just let myself live. All that striving… and for what? For what? Nothing much came of it, really. And I ended up worn out, used up, depressed, melted down, and so forth.

I can do better than that.

It’s perfectly fine if I just let myself melt into the void — in the most proactive way possible. It’s not about ending it all or disappearing, but simply drifting into the Flow that carries us all along… letting good things happen, along with the bad, not trying to control the outcomes the way I have been… finding out what happens when this-or-that happens. I really just want to do science with my life at a very high level — on every level, actually. Drop the judgment and fretting. Observe. Learn. Take the hard lessons, learn from them, and reap the rewards that come with the learning.

Just go with it, see what happens, and let things develop along the way. Let myself be gloriously autistic, let myself be glorious, period.

This dumpster fire of a world has gotten me down long enough. I have a choice. I can suffer terribly, or I can just live my life and glean what goodness I can get from it. And there’s a lot more goodness there, than I generally realize or accept.

Time to change that around. My perceived misfortunes aren’t doing anyone any good, most of all me.

I’m free to come and go as I please. I’m free to do what I need to do with my life. It’s taken me decades to get to this point, but now that I’m here… why not just go with it?

Why not indeed…

Simplifying my life

person jumping into focus

My 52nd birthday is coming in a couple of weeks. I never used to pay it any mind – in fact, I hated to pay any attention to it, at all. It was just another day to me. Just another reason for people to torture me with surprises and constantly bombard me with “well wishes” for a day that I never asked to be born on.

It sounds a little grim, but that’s my outlook usually is, around this time of year. I didn’t ask to be born into a world that cares nothing about me, that doesn’t know me, that doesn’t care about the same things I care about, that is so unbelievably cruel and stupid and has no problem being that way, day in and day out. Even the people who are supposed to be “helpers” are unbelievably cruel in their ignorant stupidity, their hubris and arrogance leading us all straight to hell.

Fck them. Fck the world that would just as soon see me dead. Fck the employers of the world who suck the life out of everyone they fool into working for them. Fck the people who fck everything up and don’t give a sht about it. And f*ck the people who want to cut those people a break, because they’re “just human”. Those dangerous jokers have made a mess of things, and they need to be held accountable, not given a pass because somebody either A) wants to humanize them to ease the existential burn, or B) hopes to join their ranks, someday.

Collusion. I’m so tired of collusion. Excuses.

Yep. This time of year is pretty dismal for me. Grim. Because yet another year has passed, and it’s all the same sh*t as last year, same old pains, same old suffering, same old dramas that suck the joy out of every breath. The pain never goes away completely. It just moves around. It’s boring in its predictable unpredictability.

And here I am… a little farther down the road, not feeling as though I’ve actually accomplished anything of objective value. Still working job that pays the bills and has some interesting aspects to it, but is pretty much a dead end and doesn’t lead anywhere I want to go.

On the other hand, I’ve had a pretty productive blogging year. I’m not sure why I have such a hard time assigning objective value to the things I create. In the past year, I’ve written a whole truckload of blog posts, and some of them have been pretty good according to others as well as my own estimation. Other posts, not so much, but output variability is the price you pay for greatness, I s’ppose 😉

Maybe the valuation part is because I’m not earning any money at this writing, for all the work I put into it. Don’t get me wrong – I don’t believe that money is the only measure of value for things I write. But for all the effort I put into it, an “emotional paycheck” is not the only thing I want to get out of it. It’s at a point, where I need to do better than that. I need to do more. And the writing really needs to start supporting itself.

It’s like I’m a single parent and my writing is a 20-something just out of university who’s been hanging around the house, eating all the food, taking up space, adding to the laundry loads, and not making an effort to go out and get a job. It’s unsustainable. It really is.

So, what do I do about it? What indeed?

Well, I have a handful of options.

  • There’s my Patreon, of course. I started it, nearly a year ago, with the best of intentions. But I just haven’t kept up with it. I haven’t been able to square the need for free #ActuallyAutistic writing with “the money thing”. I really, truly believe that we need to make writing by autistic folks accessible to the wider world. Our voices, our stories, need to be out there. And not everyone has the money to regularly support writers — especially folks who are over-extended by their efforts to deal with autistic difficulties. We can be “underemployed”, underpaid, and generally short on cash, and we need to lower the barriers to sharing our stories.

At the same time, I also believe it’s critically important that we as an Autistic community place a larger value on our work. We shouldn’t just give it all away for free. Countless scholarly journals charge $35/paper, or hundreds of dollars for a years’s subscription, lots of them earning a whole lotta cash off studies of our existence. It’s the most blatant example of rank social and economic injustice. And funding is constantly going to research institutions that are locked onto the target of eradicating people like me from the planet.

We have to change how we move our money around. We have to change who gets money, and why. I’m willing (and eager) to devote my life — yes, my life — to the documentation and analysis of the Autistic experience, explaining a whole lot that baffles the world, especially with regard to women and girls on the spectrum. But I can’t do that, if I can’t pay my mortgage. I can’t do that, if I go hungry and can’t provide for myself and my partner and take care of the other people in my life who need taking care of.

That all beings said, I’m changing how I handle my posts on this blog. My new policy is to post here for free — for a week. And then move the posts over to Patreon, behind a modest paywall. A minimum of $1/month will get you access to all my posts. You can pay more, if it’s worth it to you. That’s always welcome! I’ll figure out some other pay level schemes to offer (including thematically grouped and lightly edited collections of posts, personal chat sessions with me — especially for researchers who would like to discuss aspects of autistic life with me, and other offerings I have yet to think of).

  • Another option is to publish selections of my work (in eBook and print book) format, and make it more widely available for a small charge on Amazon.com and other online outlets. That’s actually a pretty easy thing for me to do. I’ve been publishing, myself, for years. And I can offer the pieces at different prices and in different formats. This could work. I love to format documents and publish them out, and it’s my hope that others will get even more out of it, than they would on this site.
  • And then there’s simplifying my blogging. I have a bad habit of starting new things on a whim, thinking I can commit to them, and then realizing after a week that it’s never going to work. I’ve started more blogs over the years than I care to think of, and only two of them have stood the test of time. I’ve done it with Tip of My Aspergers (no, I’m not linking to it), and like so many other blogs I’ve started, it petered out, because the theme I was so passionate about, several months ago, has melded into the overall landscape of my life, no longer a distinct blog with its own presence. The posts I’ll move over here. And leave it at that. So I have fewer things to think about and process, when I sit down to WordPress each morning.

Focus is good. I need more of it. Too much on my head, too much that’s confusing, too much that demands my processing… well, that just drags me down, and then I end up staying in a persistent state of borderline meltdown for days on end. Sometimes weeks.

So, yeah, this is it. Time to channel that “F*ck You” attitude into something constructive, and see where that takes me. It’s no good, letting it “back up” on me and make me miserable. My birthday is coming. I can’t just let it arrive, without having done something substantive to move myself in the direction I need to go.

It’s gonna take me a while to move all my posts over to Patreon, as well as publish out the pieces I deem Amazon-worthy. But it’s a great direction for my energy.

Time to move. Time to make a move.

A “Sample Sensory Diet” of Common Sense

a picture of a number of cherry picker lifts in a storage yard

Some years ago, I found this:

A Sample Sensory Diet

The following guidelines represent a kind of sensory diet for one particular child. Keep in mind that every child has a different regulatory and sensory profile, and that these activities are not appropriate or useful for every child. You should get guidance from an occupational therapist or other individual who is experienced with sensory integration.

In this particular example, the child would become disorganized on a regular basis. Although this has meant different things at different times, this child shows disorganization primarily by:

  • being extremely silly and unresponsive
  • laughing uncontrollably
  • losing control of his body–getting extremely limp and/or clumsy
  • becoming either hyper- or hypo-sensitive to pain and other physical stimuli
  • getting aggressive–pinching or spitting, usually in a taunting, almost maniacal way
  • humming and clicking while wandering around aimlessly

Engaging this child in sensory activities on a frequent, regular basis seemed to help him to remain engaged, focused, and in control more often. When this child does get disorganized, these activities help him to find himself again.

Great resources for sensory integration information:

Kranowitz, Carol Stock. The Out-of-Sync Child: Recognizing and Coping with Sensory Integration Dysfunction. 1998. New York: The Berkley Publishing Group.

Ayres, A. Jean, PhD. Sensory Integration and the Child. Western Psychological Services: Los Angeles, 1979.


At the critical times during the day, plan on activating the child with these activities.

NOTE: Spin the child at every activation phase. Spin him in the swing 10 complete revolutions each direction, with a 20-30 second pause in between. Spin firmly and quickly. Do not repeat.

Warning: For some children, spinning is not useful, and can be overstimulating and dangerous. Before engaging in any of these activities (and spinning in particular), please consult a professional who has a solid understanding of sensory integration principles.

Chase Games

  • Tag
  • Follow-the-Leader
  • Obstacle Courses
  • Red Light/Green Light
  • Running Races

Exercise Games

  • Simon Says
  • Obstacle Course
  • “If You’re Happy & You Know It”

Incorporate:

Jumping Jacks
Stretching
Situps and Pullups
Tumbling/Head Stands
Balance Beam
Standing on one leg
Wheelbarrow

Swinging/Bouncing

  • Inside swings
  • Trampoline
  • Hang-bar
  • Tire Swing
  • Outside swings
  • Outside trolley
  • Exercise ball

Squeezables

  • Nerf balls
  • Gak, floam, flubber, silly putty
  • Play catch with any ball

Incorporate those activities plus others listed in the box below into as many of your games as possible. Be sure to work in a sensory activity at least every half hour.

EVERY HALF HOUR AND ANYTIME

Other Sensory Stimulation

Everything on the other list plus:

  • Smelling Scents Game
  • Rubbing/Brushing (brush firmly and consistently–avoid stomach)
  • Rolling Up In Blanket
  • Crawling through a “caterpillar” (long tube of stretchy fabric)
  • Dragging/Sliding Around Room
  • Silly Walks (e.g., crab walk)
  • Ball and Bat
  • Imitating Songs
  • Hand Games
  • Stilts/Roller Skates
  • Jump Rope

CALMING ACTIVITIES

8:30AM Bath, Brushing, Deep Pressure

3:15PM Child’s choice (e.g., biking)

6:30PM Supper, Bath, Deep Pressure, Free Play, Stories, Bed

Now, a bunch of things come to mind, when I read this.

The first is, Why is this considered a “sensory diet” that needs to be specifically detailed to parents? I thought that’s just how kids were/are supposed to occupy themselves when they’re kids!

I mean, seriously – why is this a plan of action that is called out as something special, something artificial? Why is this something that is seen as out of the ordinary? When I was a kid, this is just what we did — we played plenty of “Chase Games” like tag, follow-the-leader, obstacle courses, red light/green light, and running races. And we played plenty of “Exercise Games” like Simon Says, creating and running through obstacle courses, and singing “If You’re Happy & You Know It”. And we didn’t need a trained expert to “instruct” us how to do it.

Am I the only one who thinks that this “professionalized” approach is a bit silly? For people who are too busy to tend to their children and are eager to plop them down in front of the television or the DVD player or the computer, it might be necessary to detail exactly why kids need to play games like this, but it’s a sad, sad commentary on modern American life, when parents and adults need to be explicitly told to create conditions in which their kids can play tag, follow-the-leader, and red light/green light.

I really think there’s something in kids that instinctively knows what they/we need, in order to mature and grow up strong. When I was a kid, we instinctively did jumping jacks, stretching, situps and pullups, tumbling/head stands, balance beam, standing on one leg, and wheelbarrow. We didn’t need “guidance from an occupational therapist or other individual who is experienced with sensory integration.” We just did it. We ran around and played. We raced each other and tested our physical limits and worked our tumbling and balancing into the course of our play. We skipped rope. We climbed, we jumped, we did all sorts of things that kids apparently don’t do anymore, unless they’re specifically ordered to do so by trained professionals or parents who have been coached by experts.

How did we get to this place? How did the domain of child’s play become the exclusive domain of qualified and certified professionals? I have no doubt that the work authors who describe in detail (for overwhelmed adult minds) the tangible benefits of kids just being kids has made a contribution to the developmental health and well-being of lots of challenged kids. But what the hell is up with parents, that they need to be explicitly told that their kids need to play at, physically and socially, in order to develop properly?

WTF?

The next thing that comes to mind is, Holy smokes, the top part really describes me to a “t” when I was a kid. I wonder if my parents knew/noticed any of this stuff.

It’s really interesting to think back about how I was when I was growing up — really hyper and hard to control, and sensitive on top of it. And when I look at the list of issues kids can have:

  • being extremely silly and unresponsive – CHECK
  • laughing uncontrollably – CHECK
  • losing control of his/her body–getting extremely limp and/or clumsy – CHECK
  • becoming either hyper- or hypo-sensitive to pain and other physical stimuli – CHECK
  • getting aggressive–pinching or spitting, usually in a taunting, almost maniacal way – CHECK
  • humming and clicking while wandering around aimlessly – ??? could very well be

All of this stuff just fits me so well, except for maybe the last one, which I don’t really recall. Not that it would have been unlike me. I was an “unusual” child, to say the least, and I probably would have considered wandering around aimlessly while humming to myself to be quite a useful and productive use of time – no joke.

When I look at the list of Sensory Processing Disorder symptoms over at http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html, I’m really struck by how well a lot of them fit me, and how well they fit my mother. Whoah. This puts Mom’s behavior in a whole new light.

The problem when I was growing up was that she was on the opposite end of the spectrum than I — she was hypo-sensitive and sensation-seeking (like the proverbial bull in a china shop, always loud and high-contact and rough and not very good at figuring out physical boundaries, etc., etc.), while I on the other hand was hyper-sensitive and I had really bad reactions to touch and being pushed and pulled and treated like some rag doll.

It’s so wild to think about this, now — it really puts things in perspective. And it makes me a lot less angry with her.

It puts my whole family into perspective, in fact. My siblings had issues. I had issues. We all had issues.

And my parents made sure we grew up in an environment where we had a “rich sensory diet”. But I’m not sure they were consciously aware of all this. I don’t think my mother really understood the nature and the impact of her behavior — she still doesn’t, from what I can tell. My dad did things, too, that tied in with “sensory richness”, like building a hanging bar for us kids to play on, and always encouraging (and pushing) me to test my physical balance limits, like with my skateboard.

Mom and Dad did appear to do things instinctively to address my issues, such as spinning me around and making sure I was always physically active and encouraging me to do lots of things that developed my balance and coordination. I was a dorky kid, with a lot of problems balancing, and I have distinct memories of my parents — especially my mother — going to great lengths to get me to participate in activities that would help me develop those. But I’m not sure they consciously chose or planned to do these things. It wasn’t like they had a formula for making sure we kids developed adequate proprioceptive and vestibular viability. It wasn’t like they consulted with experts about how best to address my sensory processing dysfunction.

At least, I don’t think so. It could be that they did talk to child psychologists and what-not, and they just hid their methods from me (which wasn’t hard to do, when I was an innocent and all-but-clueless kid). Mom did have a copy of “Dr. Spock” around, and she consulted it a lot, but so much of what my parents did, other parents in our area did for their kids, as well. It was just how things were done in the world I grew up in.

This part of my post dovetails nicely with the first part — that is, what is up with parents today, and why do they need to have these things explicitly told to them?

This really, really puzzles me. Is it because there has been so much emphasis put on “professionalization” in the past 50 years (since the USA rose to a position of global domination and the parallel veritable explosion of higher education and proliferation of specialists), that we as a society are invested in our experts? Is it because we as a society have put so many of our eggs in the basket of developing “professional expertise” that we’re now obligated to dip into the pool of professional knowledge, in order to do anything, anymore? Have we become so enamored of our “advancement” that we’ve made it all but impossible to live our lives? I smell the scent of another extended blog post, for another time… but the burning question with regard to this issue within the context of this post, is, are parents so dependent on professionals for guidance, that they are afraid to just parent? And are they so distanced from the varieties of life (sitting in their homogenized cubicles in their standards-driven office environments), that they fear even the slightest deviation from “normality”, as it’s defined by the qualified professionals of the day?

Seriously, when I look at the organizations dedicated to stamping out the “autism epidemic,” I’m struck by the corporate backgrounds of these individuals. How many of the folks sitting on the boards and doing the research have actually experienced what it’s like to be outside the acceptable range of “normal” behavior and human experience? Where’s the diversity? I wonder. The unfamiliar makes people afraid. Fear makes people do rash things. Fear makes people start and/or send money to organizations and initiatives that promise to relieve their fear.

I think one of the big reasons that my own parents could create situations where I was active and had the chance to develop coordination and balance, was that they themselves have sensory processing issues, themselves and they grew up in an environment where sensory issues and autistic spectrum behaviors and tendencies were/are actually a “regular” part of life.

Anybody who says that autism is a “new” epidemic has never spent time with my family, my extended network of relatives, and the insular communities of faith in the neck of the woods where I grew up. Most, if not all, of my relatives (including third cousins twice removed, whom I actually did grow up around), as well as most of my friends and acquaintances and people I went to church with, could easily be placed somewhere on the Autistic Spectrum. Where I grew up, all you have to do is go buy a quart of milk at the local convenience store, to bump into people who — in private or unguarded moments — exhibit plenty of signs of “autistic spectrum-ish” behavior. I’m serious about this. We’re built differently, where I grew up. If you head into that neck o’ the woods (and I do mean woods), I can all but guarantee any aspiring student of the autistic spectrum will find a plethora of examples of folks all along the autistic spectrum and/or with significant sensory processing issues, who are “recovered” or at least sufficiently rehabilitated to function fully as mature adults in the big, bad world. (I won’t say where that neck of the woods is, for the sake of privacy and retaining the human dignity of possible targets of “autistic diagnosis”.)

Does this mean that the land where I grew up is chock full of behaviorally challenged individuals who need special intervention, just to get along in the world? Hell no. It just means that this so-called “autistic epidemic” might, to some extent, be a fabrication of people who have become so distanced from the flow of natural, organic life, that

A) they don’t realize that their kids actually need to run around and play, in order to grow up capable and strong and well-adjusted to the social and the physical world,

B) they can’t make a move without consulting with a trained professional expert, and

C) that the phenomenon we call “autism” may, in some cases, actually be an extreme and underdeveloped expression of what may be perfectly normal part of life — a part of life that certain folks know how to integrate into their daily lives, over the course of their constantly evolving life experience.

Now, I can sense that I’m drifting off-track with this post. And I may be courting a great deal of controversy (even wrath from the “autism epidemic” proponents). I’m finding more tangents, and my associational mind is going wild, here, and I’m sure I’m not being very diplomatic, so I’ll get myself back on track and speak to these issues more, later on. For now, let’s return to the “Sensory Diet” web page.

Under the Activities, I find even more “regular and normal” parts of my childhood experience:

Swinging/Bouncing

  • Inside swings — we had a front porch swing that we kids often sat and swung on. It wasn’t “therapy”, it was fun, and it was what we did on summer nights.
  • Trampoline — our town had one at town hall for us kids to jump on during summer vacation. I think they may have removed it, due to safety concerns, but it was one of the best parts of summer, to head over to town hall and jump on the trampoline, while the Bee Gees were playing on the radio.
  • Hang-bar — my dad installed one in our back yard, and we played on it constantly. It was just something that we had. I don’t think a doctor or expert told him to put one in. It was just seen as something that was an essential part of growing up.
  • Tire Swing — my grandparents had one of these, and when all the cousins would gather, we would all just achingly pine for our chance to get on that swing. It was one of my favorite parts of visiting my grandparents, and it was a really vital element in me keeping my cool, during visits. My grandparents’ house out in the country was full of strange and strong smells that my city nose didn’t recognize. It was easy for me to get sensorily overwhelmed, so I spent a lot of time on the tire swing.
  • Outside swings — see above. Also, I and my siblings and my best friends, loved to swing on the playground swingsets, long past the time when we were supposed to “grow out of them”. We’d head over to the park and sit in the swings and twirl and spin and do all sorts of things that “normal” people would probably consider aberrant. But we were by ourselves, and we didn’t get crap from anyone, because no one was watching us. And if they had been, we would have told them to “shove off!” anyway.
  • Outside trolley — ?? what’s this?
  • Exercise ball — This is a newfangled thing, so I can’t speak to its place in my childhood development.

Squeezables like nerf balls and silly putty were a really important part of my childhood experience. No trip to the pool was complete without a nerf ball to throw, flinging water in all directions. And nerf footballs were the only acceptable kinds of footballs to have. I remember many a game of football, with all us kids squishing and pressing and worrying the nerf football, till it started to literally fall apart in our hands. We loved our nerf footballs to death, picking absentmindedly at the surface, squeezing and pressing and throwing and catching.

We really played catch with any ball we could find. Soft squishy balls, hard softballs, tennis balls, baseballs… Run-down was a particular favorite, as we could play it in limited space and race back and forth between the bases, coordinating our motions and actions.

And we didn’t need to have trained experts show us how to do it, or tell our parents to allow us to do all this.

We just did it ourselves. Our parents expected it. And they created space and opportunity for us to do it.

This wasn’t all considered a “special sensory diet” — it was just the process of growing up. It was The Way Things Were Done.

This being said, the last thing that comes to mind is, What is up with this web page, with the “scheduling” of these kinds of sensory diet activities? How contrived — and artificial — is that?

I mean, come on, people — You have seriously got to be kidding me, that you’d actually “work in a sensory activity at least every half hour” as though it’s some part of an official agenda. What’s wrong with just spontaneously allowing these things to happen? What’s wrong with just creating an environment where kids are allowed to do all this on their own, at their own pace, in their own ways? I firmly believe, from my own experience — and my own fully functional nature — that even the most impaired kids (if given half a chance) have the innate capacity to identify the activities and the pastimes that will strengthen their weak points.

They/we just have to be allowed to do so. Without being ridiculed. Without being pitied. Without being considered “abnormal” or “defective”. Without being bullied and tortured and treated like freaks.

Maybe I’m being overly negative-Aspie and insensitive to the needs of SPD/Autistic kids, but to me that having adults organize and participate in these sorts of activities with special needs kids seems a little dumb. Adults just don’t have the imaginative range or the endurance or the flexibility (in terms of time and attention) that kids have, and they’re (in my opinion) much too “temporally bound” — as in, too aware of time schedules and deadlines — to give kids the quality of attention and activity that they need.

Why not just turn off the television and unplug the DVD player and computer, and get the kids to play? Why not just “chase ’em outside” like my mom used to do all the time, and create places where they can indulge their every SPD-rehabilitory activity to their hearts’ content? Why not just gather a bunch of kids together and teach them to tolerate differences and recognize each others’ strengths? Teach them to let the kid who can’t hit the ball to save his life keep score and organize the league. Teach them to be patient and not tease and taunt just because one of the kids picks his nose or flaps his arms when he’s agitated.

Why not just let kids be kids — and teach them to let other kids be… other? Without sanction. Without punishment. Without shame and ridicule. That seems to be a more fitting solution, than contriving all these carefully scripted and scheduled and choreographed and adult-driven activities that are poor imitations of the “real thing.” And it might just train the emerging generation of NT folks to tolerate diversity and not be mean-spirited bastards to those of us whose worst, most heinous crime is making others nervous.

How about just not treating developing kids like we’re abnormal… simply because they’re still developing?

We are all works in progress, and the sooner we stop pathologizing diversity and learn to let each other just be (and give us ugly ducklings the time and the chance to become the swans we truly are), the better off the whole planet will be.

That’s just my opinion, but I don’t think I’m wrong.

Oh. My. Lord. What a quick, strange trip it was.

telephone pole with lots of connections
I think all my connections have been maxed out, at least for now

So, I’m back home again.

Back from my marathon trip to a major metropolitan area to see my niece graduate.

Back from the constant onslaught of noise-noise-noise, busy hustle-bustle, and sensory overwhelm.

Back from the social overload… combined with an utter dearth of abstract, complex thought.

Back from an exclusively neurotypical world, populated by self-congratulatory buffoons who think their scent-filled, climate-controlled, germ-ridden, sexist world is the pinnacle of Western syphilisation. Woo fucking hoo. Like that massive, upscale outdoor mall crawling with cologne-soaked mainstream “fashion” afficionados is the crown jewel of their glorious empire. Good GOD, spare me.

Back from the brink of feeling like I was going to lose my mind, nearly every waking moment of the time.

I have a whole day off work to recover. I’ll need it. In fact, methinks I’ll need the whole month of June. That’s fine. I’ll just lay low, keep my activities to a bare minimum, and focus on getting enough sleep.

Hahahahaha! Who am I kidding? The whole point of being back home, is getting to “uncork” yet again, letting my mind and physical vehicle roam wild and free, without the mindless devotion to acquiring stuff and showing it off to everyone around me, like a rooster among mynah birds. Writing wildly, with more than a few minutes of uninterrupted thought at my disposal. Getting back to my daily routine of waking early, exercising, having my breakfast, writing for a few hours, going to work, just barely tolerating everything there, then coming home, having a nice dinner, watching a short t.v. show, and going to bed at a decent hour, so I can get up and do it all over again.

I didn’t get hardly any of that, since last Thursday, and it took its toll. Left me in a weeping zombie meltdown in Terminal D of the Hartsfield-Jackson International Airport… walking behind my partner with tears rolling down my face, as those oh-so-familiar internal voices kept prodding me to “Buck up“, “Get it together“, “Hold your shit!” All to no avail, because once the meltdown starts, the only way to get to the other side, is let it all just melt — withdraw to a protected corner (a bathroom stall), fall to pieces (weep uncontrollably), then wash off my face and get myself back into the swing of things by listening to some music and reading something moderately challenging.

Seriously, the most draining part of the whole four days was that there was so little intellectual challenge. So little flow. So little opportunity to get off the domesticated leash. And there was precious little outlet for my energy. Getting out and really moving wasn’t part of the scheduled activities. Sitting in one loud, chaotic restaurant after another… that was on the docket.

It was like sitting through a72-hour demonstration of a trendy, high-priced, extremely LOUD blender, while being forced to do “quiet hands” and keep absolutely still. Anguish. Pure anguish. And it doesn’t help that my partner just doesn’t get why I need to actually get up and move (at a pace that’s very quick for her, but just moderately steady for me) on a regular basis. She says I make her “swirly”.

Huh.

If I don’t move — fast and vigorously — for at least an hour a day, everything falls apart. My bad, that I didn’t work that into my schedule, as there was a fitness center at the hotel where I could have worked out… as well as a pool where I could have swum. My bad. Then again, by the time we left, I was so overwhelmed with stupid work shit, it was all I could do, to meet the bare minimum of required activities.

Well, anyway, I’m done with that little descent into hell. I made the round trip, and my worst fears were realized, then absorbed, and now they’re turning into something useful. As in — a whole raft of lessons about being an autistic woman in a world which cares absolutely nothing about me, and wishes I would just go away.

Not gonna happen, that going away stuff.

Then again, maybe it is. Maybe I will just go away… From its interests, its agendas, its ways of doing things. Maybe, just maybe, I’ll remove myself from that parallel track I’ve been trying to negotiate with my life, lo these many years, quit even worrying about accommodating anyone, extending myself to anyone, making an effort for anyone who’s not going to return the favor.

I swear to God, I have wasted so much time and energy in trying to meet other people half-way, and what has it gotten me? Not a whole lot. Not a whole fucking hell of a lot. Except over-extension. Except one-sided interactions that leave others thinking that they have so much in common with me, when the truth is that I’ve suppressed my own ways and interests sufficiently to convince then that they don’t even exist. That I don’t even exist.

So, screw it.

I need to just keep busy living my life and doing a fantastic job of everything I decide to do. Never mind what the rest of the world is doing. Why should I be unhappy, just because others have no imagination, no insight, no empathy, no insight, no compassion, and no apparent interest in developing any of the above? Why should I be any less autistic, just because everyone else has chosen to be NT-centric, exclusive of any- and everything different from them?

I’m busy doing my own thing, in my own way. Now, more than ever. If others want to join me, then great. But if not, they’re seriously not worth my time. It’s not like I’m going to live forever. It’s not like I have a lot of time to waste.

So, never mind all those narrow, unimaginative people. Never mind their ridiculousness. The past four days have illustrated, loud and clear, what happens when I’m trapped in an exclusively neurotypical world that’s congratulating itself for destroying everything in sight and building a replacement that’s pathetically poorly made and, frankly, a piece of crap.

Never mind any of it. We all make our choices. I’ve got better things to do, and very different choices to make.

And so, I shall.

🙂

My very ordered “disordered” life

cable span bridge sliced in three sectionsIt always puzzles me, when people call Autism a “disorder”. Seems to me, a lot of autistic folks have a hell of a lot more order in their lives than the rest of the world.

I have my routines. I have my regular stuff done at regular times of the day. I have my regular activities pursued at regular intervals. I have a really great cadence which, unless it’s interrupted, allows me to get a whole lot done in a very small window of time. In the course of an average day, I can have a to-do list that runs off the page of the 4×6″ stickie note I keep in my daily minder. And I will get everything done — and then some — in a seamless flow of “Okay, that’s done – what’s next?”

I tell people what I do each day, and they shake their heads and tell me that I do “too much”. But for me, that’s just how things flow. In fact, everything works better for me, if I have a whole lot of stuff lined up in a seemingly impossible jumble of imperatives.

Something about “juggling” (it’s not that at all, come to think of it) stimulates my visual-spatial thinking, prompting me to see the world in a very different way than the verbal, sequential folks who surround me. My way may look like “controlled chaos” to some, but it’s nothing of the kind.

It’s all very orderly, I have to say.

It might not make a lot of sense to others. Of course it doesn’t. Not if those others are neurotypical. Not if those others are not visually-spatially inclined. Not if those others’ priorities are with skating along in a standard-issue life, doing what they’re told, living up to others’ expectations, and fulfilling the requirements laid out for them by society at large. In some cases, you need only meet the basic requirements of mainstream society, to get by. Assemble the right kind of family. Get the right kind of job. Wear the right clothes. Drive the right car. Buy the right stuff — and make sure everybody knows about it. And you’re set.

That doesn’t work with me. I have priorities other than social acceptance and accruing stuff. Even if I do try to pay attention to those things (and I do try, every now and then), I rapidly lose interest, because they really serve no greater purpose in life, other than to make me feel a little better about my lot. I want to change my lot in life, not make a grudging peace with it and make myself comfortable till the grim end comes.

And so, the rationale and the reasons behind creating certain kinds of “order” in my life evaporate. Because they just don’t work for me.

Now, if you turn things around and turn a lens on the rest of the world from my perspective, all the “disordered parts of my life start to look very ordered, indeed. There’s an excellent reason for everything I do, and chances are, I’ve given it a whole lot of thought before starting to do it. Even the things that I haven’t deliberately put in place, if they’re in my life, they serve a vital purpose. Or they wouldn’t be part of it.

The ritual I follow each morning serves to get me up and going in the morning in an efficient and energizing way, without needing to spend too much time on reinventing the wheel of my morning activities.

The specific sequence I follow to get myself groomed, exercised and fed each morning, I’ve developed over years of practice and trial-and-error. It would take too long to explain each step, to go into it now. Just know that the specific sequence I’ve developed has been for a very good reason.

How I get to work, how I set up for my daily activities, the times I eat, the things I do to perk myself up or calm myself down… it’s all for a reason. For a number of reasons, actually.

If people (friends, family, loved-ones, clinicians, researchers) would look more closely, they’d see the reasons. And if they could spend a day in my shoes, living in my own experience, they’d totally see the logic of it. And they’d congratulate me for coming up with such an elegant system.

Ultimately, I think the origin of at least some of the “disorder” talk is the lack of understanding among researchers. And parents. And loved-ones. And, well, anyone who isn’t privy to the logic of my / our systems. Those who don’t understand Autistic ways and thought patterns. It’s easy to be put off by something foreign and unfamiliar, and (often-times) that would be us.

It would be wonderful if we didn’t have to verbalize everything for folks who see us as disordered… if they could actually experience our lives as we do. Maybe virtual reality will make that possible, someday. I think it already is, actually. But it’s going to take more than a VR session to get people educated and informed.

We’ve got our work cut out for us, that’s for sure.

In the meantime, I’ll go about my business and tend to my systems, my own individual order.

Regardless of what others have to say about it.