About that Walk…

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.

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I dunno – I just don’t think there’s enough positive stuff out there about #Autism

Not to mention success stories.

Okay, okay, I get it. We need to build support for folks who really need it. But I think at times that our Autistically rigid thinking keeps us aligned with some pretty rigid support possibilities, many of which simply aren’t available to all of us.

The needs of an Autistic kid in a city may be very different from the needs of a middle-aged Autistic woman living in the suburbs, and they may be very different from the needs of a 30-something Autistic man living in a rural area. And then we have our aging population… men and women… who have been through so much, and now face the double-whammy of becoming elderly (a challenge in society, in general) and having those sensory/social challenges which may become even more pronounced in old age.

I’m worried. Anxious. For myself and all my Autistic tribe. And I’m not alone.

The thing is, I suspect that anxiety takes the edge off my creativity. It locks me into rigid thinking. And it erodes my ability to come up with some really inventive solutions.

Personally, I think we Autistic folks are some of the most inventive people on the planet. For sure. I mean, look around — so much of what we have is the product (I believe) of an Autistic person with an intense interest in One Single Subject. That focus has produced some truly amazing things. And that same focus can help us fix our future.

So, the future… yeah. What does that hinge on?

Well, the past, for one. And also… patterns! Patterns, yes. We plot our course forward by referencing patterns — this leads to that, this causes that, if you do this, you can logically expect that. And we gain a sense of where we are in the world by watching other people and seeing how their lives have shaken out over time.

We are constantly learning from other people, “ingesting” their experiences, learning from their mistakes, and taking cues from their stories. Humans are story-loving creatures, and each of us has thousands of stories of our own that we collect over the course of our lives. They can be based on our own experiences, or they can be from our observations of others. Or we can make them up as we go along. But we have them. We use them. We rely on them to no end.

Yes… stories.

Earlier this week, I was chatting with an older Autistic man who spent time with younger Autistic people. He said he was really alarmed at how traumatized those young people were, how harrassed they were, how on-guard and roughed-up by life they were. These were young people who all had the advantage of knowing they’re Autistic, but it was such a burden for them.

😦

Major 😦

I personally don’t think we do a good enough job as a community, sharing our strengths and accomplishments… our joys and ecstasy. Autism for me is every bit as much about bliss, as it is about struggle — equal parts, I’d say. But the discussion so often centers around the struggle, perhaps because I think I’m going to get commiseration and support from others who know how I feel. Unfortunately, that’s seldom the case. If anything, it works against me. And I end up getting sucked down into the Pit of Despair, as I perseverate on the idea that somehow, somewhere, sometime, I might get some help.

I won’t… 93.72% of the time. Now and then, I will, but I spend far too much time working towards that 6.28% that’s occasional and intermittent at best.

So, where does that leave me? Sorta kinda where a lot of queer folks were left, back in the 1990s, when so many of us were coming out, but most of the media about being queer (especially movies) were so full of angst and pain and suffering. Suicide, too. Ugh. How many gay and lesbian movies (long before the concept of being queer took hold) showed us being miserable and downtrodden and better off ending our lives? To be honest, it wasn’t altogether unlike what Autism$peak$ has done. And while I’m not 100% on board with comparing Autistic folks to queer folks, all across the board, there are some pretty pronounced similarities.

• Being different embarrasses our families.
• They try to make us different — more like them.
• If we’re lucky, they fail. If they succeed, we’re twisted into a version of ourselves we don’t understand.
• Ostracism, misunderstanding, violence. Etc.

Anyway, this is a really long-winded way of saying I think the Autistic community could learn a thing or two from the LGBTQ+ community (and yes, we do overlap), especially insofar as the Pride movement is concerned. Celebrating our differences, developing our own culture and community, taking our place in the world just as we are, and having a lot of fun while doing it… There’s real power in that, I believe. And it’s where I hope we go with our Autistic community building.

I’m not gonna tell anybody what to do or how to do it, but I can do something in my little corner of the world. I can talk about my life in positive terms. I can share my triumphs and joys. I can really celebrate the successes of other Autistic folks. I can focus on the good, the strength, the fortitude, the brilliance. None of this takes away from the challenges we have — it’s merely ballast for my proverbial vessel as I sail the high seas of life.

There are so many wonderful, positive things about Autism that get lost in the crisis, anxiety, difficulty, drama, and shame of growing up Autistic. They get lost to parents, they get lost to us. They get lost to society, in general, obscured behind the ignorance and judgment. We go into hiding. Because it’s safe there.

And then, when we grow up, we can be so alienated, so accustomed to hiding, that our actual development isn’t recognized. Or people are so used to looking at us as they remember us, once upon a time, that they don’t give us the chance to shine.

I think that needs to change.

I can’t speak for anyone else, but I plan to change it on my side… do my best to unleash a torrent of writing about how absolutely excellent it can be to be Autistic. It might piss a lot of people off, because it may undermine their message about how we need help and support. But I’m not going to lose the good parts of my life, while I wait around for the government or some organization to meet my needs.

Certainly, it would help… but I think we can do more than that.

Well, I can, anyway.

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

Wow – 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.

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

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.

We’re all autistic, we’re all family… what’s the problem?!

Ugh. My familial disillusionment strikes again. I had hoped so much to be able to connect with my parents, this holiday season. I won’t be traveling to them, so I’ve been hoping we could interact with each other in a mutually satisfying way. I’ve been cherishing the idea that the distance will relieve me of some of the existential angst that used to push me to suicidal ideation this time of year… every . single . year . until I was nearly 50.

Yeah, I know I’m being unrealistic. Everybody’s bothered by family stuff, almost without exception. I know very few people who don’t have issues with their parents, who don’t carry some sort of painful “baggage” about their relationship, who aren’t haunted by unaccountable ghosts that seem to embed themselves in our sinews and make themselves known like so much arthritis when the weather turns cold. And when you’re autistic, family stuff gets even more… interesting. I’m no exception.

So, I’m all spun up about sh*t. And what, pray tell, is it about?

This morning, my father finally responded about a piece of writing I’d sent to him a few weeks ago, to see what he thought of it. He’s seen my writing before, and he hasn’t always had favorable reactions. He’s misunderstood a lot of what I’ve written and said over the years, and he’s lectured me on all sorts of non-issues that he got all worked up about.

I chalk it up to his own Aspergers… that clinical tone he takes, the critical eye he turns to things… he seems to think he’s doing me a favor by telling me where I’ve gone wrong. He doesn’t actually discuss my overall ideas. He looks at specifics, homes in on the things that he thinks are flawed, and then he tells me in detail what those things are… usually from his own dogmatic point of view.

Yeah… thank you, Aspergers. That whole big-picture thing isn’t a strength of his. My mom isn’t much help, either. She also homes in on a narrow slice of something I’ve written, she takes it out of context, and then she gets upset. She’s much more emotional than he is, and she’s been so beaten down by the rampant sexism in her world, that she has a hard time articulating exactly what’s bothering her.

And then I have two of them all twisted up about my work, when all I really wanted to do was share it with them so we could discuss some of the ideas I’ve been thinking really hard about. It’s generally a really tough situation for everyone, and I hate it every time it happens.

Part of their issue is that I don’t have a college degree. Both of my parents have Masters degrees, and my father used to teach at the college level. I’ve got a number of PhD-level academics/researchers in my family — some of them considerably younger than I — and the whole formal education thing is very big in my family. I still get little insinuating lectures from my parents about how inexplicable it is, that I never got my degree. I attended university for four years. I accumulated the debt. I did my time. But no degree. That just rankles them to no end… probably in no small part because of their Aspergers.

What they can’t seem to get their heads around is that my “issues” were severe and cumulative in college… to the point where I had a serious drinking problem, I was in trouble with the law, I’d “acquired” a stalker, and I literally couldn’t complete my coursework in a timely manner, so completing the whole gauntlet just wasn’t possible. They’ve always felt it was my fault. I just didn’t do a good job of… anything. I’ve embarrassed them. And what right do I have to write anything that sounds like I know what I’m talking about, when I’m clearly such a loser?

So, when I’m presumptuous enough as to write something for others’ consumption (they don’t know about this blog), they get all up in arms. Because they think the things I write about require years and years of study at accredited universities, to qualify to speak about them. If I haven’t done the coursework, I can’t use my voice. I’m not qualified. I’m not vetted. I’m just some upstart making noise. And I’m making noise in ways that might embarrass them, if other people find out. I’m making noise that embarrasses them simply by right of me making that noise. It has no order for them. It has no sense. Because I haven’t ticked all the boxes that tell the world I’m allowed to say the things I say.

And for this very reason, I am incredibly grateful that I’m not traveling to see them for Christmas. We were going to try to travel down, but… nah. It’s winter. Officially. There’s snow on the ground and too much traffic on the roads. Better to stick close to home, and just settle in with my books.

My comfort.

 

On my terms.

In my own way.

That’s not “wrong” at all.

Not by a long shot.

Working… waiting… working… hoping… working.

Oh, my heavens. It’s Friday, which is both good and bad. I have a huge deadline tomorrow morning — we’re launching an application at work that’s at the center of a huge political battle. And I’ve been in the thick of it for about a year, now.

When I think about it, it’s pretty amazing that I’m still functioning. This project has torn the living crap out of me and lots of people who worked on it. The main problem is the politics behind it — four six different bosses from three different countries, all at cross-purposes, all using those of us “in the trenches” as cannon fodder to build their empires.

And meanwhile, all we’ve really wanted to do was get the job done. Just get the work finished to our satisfaction and the best of our abilities. The project had to be done. It’s replacing a couple of other software applications that have kept people from doing their jobs for years. Those old apps have made a lot of people miserable / mad / frustrated / apoplectic (me included). So, replacing them with a single “solution” just makes sense.

It’s been expensive. It’s been demanding. It’s been extremely detailed and time-consuming. But it had to get done.

And we were all prepared to do it. We were ready to do it. To make the concessions. To compromise. To collaborate. To do what needed to be done. And we’ve done exactly that.

No thanks to our bosses. If anything, they’ve been the blocking factors. They’ve been the ones who have been making everything harder and more complicated than need be. They all want to hang onto their power and influence and make sure they have a place in the evolving world around us. But it’s been at the expense of the people actually doing the work.

Like me. And the other person doing a job similar to mine in another division, who’s been in lockstep with me, the whole way. She might actually be dying. She’s got COPD and a host of other health issues, and she’s been out sick a lot, over the past couple of months. She’s having surgery next week, and I’m not sure if she’s physically strong enough to survive it. Others on the project have been on extended sick leave, because the pressure was just too great. We’ve all been pushing forward. And the thing holding us back, has been “management”. The people in charge. Who see imminent success on the horizon, and all want to jump in and take credit for it.

Of course, we’ll just be pushed out of the way, as people who had nothing to do with any of it step in and start to crow about how they had a role in the success. While those of us who put on the proverbial brakes and kept people from making really bad decisions are pushed to the side and dismissed.

I just want it to be over with. And then I want to go on vacation for Thanksgiving week and not think about any of this. I won’t be able to, of course. Oh, sure, I can take vacation, but I won’t have all that time off. Partly, that’s okay, because getting this thing launched is pretty exciting, overall.

And when it’s live, it’ll be a thing of beauty.

But man, oh man, am I tired. Just fried. Over it.

And sick of everything.

Well, once this is all put to bed, with all the nagging details settled and accounted for, the next batch of tasks identified and prioritized, and the political wheels put in motion to get those things on the radar of somebody Very Important, I can step back catch my breath, and go back to living my life.

I just have to get through today in an orderly fashion and in one piece.

Then, tomorrow, I can dig in for a few hours in the morning… get this puppy launched… and get back to my life.

And do something other than work 12 hours a day for somebody else.

Maybe immerse myself in Joy.

#Autistic joy – it’s a thing. And we should have more of it.

Agora Theatre Wall – isn’t it lovely?

This morning, during my morning exercise bike ride, I read a piece by John Elder Robison about My Life With Asperger’s

Sex, Lies, and Autism Research – getting value for our money

How to get tangible benefit from the millions we spend on autism science

The US government is the world’s biggest funder of autism research.  For the past decade I have had the honor of advising various agencies and committees on how that money should be spent.  Sometimes I’ve been pleased at our government’s choices.  Other times I’ve been disappointed.  Every now and then I turn to reflect:  What have we gotten for our investment?

Autistic people and parents agree on this:  The hundreds of millions we’ve spent on autism research every year has provided precious little benefit to families and individuals living with autism today.  Over the past decade the expenditures have run into the billions, yet our quality of life has hardly changed at all.

You can read the full piece here. It’s worth it.

And of course it got me thinking… along similar lines to yesterday’s post, wherein I pondered the irregularity of autistic joy.

Returns on investment. Getting our money’s worth. Having something to show for our investments… What a world it would be, if all the money spent were going to opening up chances for good to flourish, rather than some “war on autism” dedicated to <begin sarcasm> hunting down and eradicating the dread disorder that “steals” perfectly healthy and happy children from their families and tearing apart everything their parents hope for and hold dear </end sarcasm>.

Now that we’re all triggered, let’s take a deep breath and step back from that hijacking of the collective consciousness by ve$ted intere$t$ and pause to actually recognize and laud the truth of Autistic joy.

If there’s one thing that seems to set Autistic people apart from non-autistics, it seems to be the capacity for joy. Honestly, looking at the neurotypical world, all I see is pain. Frustration. Anguish. Predators and prey. And the best that most non-autistics I know can hope for is just a temporary relief from their pain. Drinking. Drugs. Facebook. Yes, they have their friends and family, their careers and reputations. But even those joys seem so fraught with danger and conflict, there doesn’t seem to be much purity there at all. And the times that my non-autistic friends and associates are happiest, are when they’re numbing their pain with a stiff drink or distracting themselves from their pain and fear with some form of entertainment.

Truly, it’s such a dreary world they inhabit. Where’s the joy? Where’s the ecstasy? They don’t seem to have much capacity for it, and they treat my (and other Autistics’) capacity for unbridled joy like it’s a disorder. A condition that needs to be fixed.

How does that work, exactly? I just don’t get it. I would imagine it’s a little like being a really tall person during the 1700s, when people were considerably smaller than they are today.

The thing is, I don’t think non-autistic people are completely devoid of the ability to feel and experience ecstatic joy. I think they have as much capacity as we Autistics. They’re just not allowed to experience it by their milieu. They’re smacked down. Held back. Shamed and blamed and pressured into being certain ways because that’s “normal”. Huh. How ’bout that.

Meanwhile, it just holds them back. It cripples them, not only in their own lives, but also in how they relate to us.

It’s a little like the inexplicable conditioning of women to not really move that much in their lives. I’m noticing this more and more, these days, as I continue to move and be fairly limber and spry and strong, compared to my female peers. I take stairs two at a time. I lift 40-pound water bottles on a semi-regular basis. I rake my own lawn. I shovel refuse into my wheelbarrow and push it to the dump pile down the road. Even though I have issues with chronic pain and scoliosis, I get up and move around with pretty decent mobility.

Meanwhile, my female peers — friends and family — move a lot more slowly than I. Their joints are giving out on them, and they just don’t move as well or as freely as I do. In some cases, I realize it’s because they’ve been focused on being “good girls” for their entire lives, and good girls don’t jump up and run across the room. Good girls don’t take stairs two at a time. Good girls don’t stretch their backs and necks to get them to crack. They might go to yoga. Or take a pilates class. But they don’t really move freely in the course of their everyday lives.

And after decades of being demure, it’s taken a toll. They can’t just hop up and run across the room. They can’t dart out of danger, if something is flying towards them. And they run out of energy pretty quick, pumping themselves up with carbs and sugar and caffeine.

I’m not talking about disabled people who are dealing with physical limitations. I’m talking about healthy, non-disabled people who have actively limited themselves with their choices and behaviors. Because good girls don’t move quickly. Good girls aren’t physical. Good girls don’t take stairs two at a time. That’s not normal. And it’s certainly not free.

I have no idea why some people can’t deal with freedom. Or joy. Or ecstasy. But that’s not really my problem. My job is to make the most of my own freedom, my own joy, my own ecstasy. And to protect and shelter it in the face of all the people who covet it but refuse to allow themselves to experience it.

Autistic joy is a thing. Today, for me, it’s about getting back to my routine, which allows me to do so much more than I could if I had to re-design the schedule for my day, each morning.  I have a lot to get done, and my routine allows me to focus on the new and exciting things that interest me, even while I can consistently complete the basics that form the foundation of my life.

With my routine, I can get myself out of bed, wash my face, brush my teeth, and get myself downstairs with relative ease. With my routine, I can get my daily exercise, catch up on my online reading, have my breakfast, and get some writing done before I start my day-job work. With my routine — which other people might consider mind-numbingly consistent — my mind is freed up to do more interesting (and far more complex) things than figure out how to fix my breakfast. With my routine, I can get a whole lot of things done, that most people wouldn’t think are even remotely possible. And there’s a lot of joy to be had in the doing. Having four(+) projects going at the same time, and seeing them all coming to fruition in their own times and their own ways, is a rare treat that isn’t even on the radar of most people I know.

Autistic Routine — as much as it’s pathologized by the diagnostic establishment — is the very thing that makes it possible for me to function at higher-than-average levels.

And it’s something that brings me joy, which should be more than enough reason to depathologize it.

So, yeah. Rather than getting hung up on all the downsides of Autism (and don’t get me wrong — there are a lot of challenges that can make your life really miserable), maybe we need to focus more on the joy that seems to come part-and-parcel with  Autism.

Autistic Joy is a thing. Let’s have more of that!

Through the river locks of #autistic joy

I’m coming ’round to my desired routines again, getting back to some narrow interests that have drawn me in and held my keen interest for years at a time. I’m finding myself able to think again, after a months-long hiatus of all-consuming DO-DO-DO–GO-GO-GO. I’ve been so busy “upping my output” that I’d lost touch with the simple act of taking in.

I had all but forgotten about some of those vital interests — the books I’d bought to read (devour, really) and ingest and think on, long and deeply, got stashed in my office and I haven’t spent much time there at all for months… the papers I’d downloaded to take in and consider also ended up in piles in my office… the theories and philosophies that have lit up my life so brightly for so many years, faded into the background of my day-to-day rush to Get Things Done…

Yeah, I got busy. And necessarily so. All of it was important. All of it held my interest and taught me useful things.

But as with any all-consuming effort that flames up in a series of inner fireworks, there’s a price to be paid, and that price was the steady flame of joy from what’s held my interest in a steady, rapt embrace.

I think perhaps this is a distinctly autistic feature of mine. I tend to be so completely consumed by what I’m doing at the time, I lose sight of everything else. And then my best-laid plans to do such-and-such a thing in such-and-such a timeframe… well, that all flies out the window like a caged bird that’s realized the keeper left its door unhooked. At the same time, my “interim” interests (intellectual sprints in the midst of my conceptual marathon) tend not to last long. Maybe a few weeks, maybe a few months. And I can lose interest in them rapidly, so that the full roster of Productive Activities I’ve earmarked for doing… well, that just gets lost along the way, too.

So, I end up with a lot of things started, and not a lot finished in the intended timeframe. Ultimately, I do finish things. But it’s years after the original plan. One of my books took nearly 20 years to complete. While others took me maybe 6 months, tops. Other works have been under construction for a couple of years, and they still don’t feel like they’re ready to be done.

I guess I do need to let my imagination “off the lead” and let it run around wildly for a few weeks/months at a time. It re-invigorates me, when I’ve reached a point of overwhelmed ennui, and nothing I’ve been working on makes any logical sense anymore — not because it has no sense, but because I’ve pushed myself to the point of not being able to reason, to think, or to draw anything useful out of what I’m pondering.

It’s cyclical. It needs to be. And yes, it doesn’t conform to the usual timeframes of the neurotypical world. How do those people live that way, anyway? I don’t get it. It seems both forced and dessicated, as though there’s no room for anything human at all. Just a mechanization of our creative impulses.

I can say this (and complain bitterly about it), because I make my living as a Program Manager at one of the planet’s largest high-tech companies. I see (and have to live) this forced, artificial, mechanized way of doing things every moment of my professional life, and I don’t like it. I’d love to toss a wooden shoe in the whole works and grind the teeth off the gears. Stop the whole machine from working that way. But alas, ’tis not in the best interests of my ongoing employment to do that. I like to eat. I like having a roof over my head. I like being able to afford to live my life. So, I keep those gears turning.

It’s a master-class in Everything Not To Do, If You Want To Keep Your Spirit Alive.

Well, so it goes. Railing against the imperfections of the world is all very well and good, but it’s much more productive to counteract it.

And I guess that’s what I do, when I move at my own speed and meander through my personal projects. Like a boat moving between two bodies of water that are at different levels, I need to progress gradually through the “locks”, letting the waters flow in/out and lift (or lower) my proverbial vessel, as I move from one level to the next.

Maybe, just maybe, that gradual way is my own way reclaiming my own autistic identity and reinforcing my own “organic” process (much as I hate that expression). The daily grind really does show me how I do NOT want to conduct my own affairs. And while it does grind me down, and there’s a big part of me that wishes I could make a living doing what I love to do, rather than doing what others will pay me to do, because they’re under the impression that it “needs” to be done… I’m not holding my breath. I’m an inventor and a builder, not a marketer, and I’m not going to waste my time trying to force myself to work in a mode that doesn’t suit me.

So, the day job remains in place. Until I can make a living otherwise.

Well, the day awaits. I have a bunch of things I need to do, and I’ve got a social afternoon ahead of me. I’m looking forward to it. Hangin’ with another Autist. It’s always a pleasure and a relief.

Till Monday rolls around, and it’s back to the same old…

In the meantime, though, I’m good, just going along at my own pace, piecing things together as I go, and keeping my spirit alive and lively.

With joy.

All that joy.

Into the weekend

I’m working from home today. My first conference call is in 10 minutes, so I just “dash off” a quick post to get myself in the mood for the day.

I got a lot done, yesterday, actually. Finished three really daunting tasks, some of which have major political implications and may spark some in-fighting (which I hate). I just took care of it. Because it had to get done, and I was on deadline.

I’ll let the captains of industry duke it out. I did my part, sending out the emails and notifying people of stuff. And I’ll do some more today.

The weekend is looking promising. It’s not going to be easy, but it will go. Some good things. Some sad things. And errands. Always the errands.

An old friend of mine lost his wife to illness a few weeks ago, so there’s a memorial service tomorrow night, which I’m attending.

I took care of the biggest chores last weekend, so I won’t need to work on them this weekend. I will have time to write and read and relax and make some progress on some of my side projects.

I’ve found some good podcasts, and I can listen to them.

And rest. Nap. Catch up on my sleep. I’m a little behind.

But it’ll go. It will all go — who knows if it’ll happen according to plan, but it’ll go.

Dropping back – then stepping forward

It’s been a while since I blogged here. There’s a good chance people have forgotten about me, or they figure I’ve moved on to other things.

Actually, I have been doing other things for the past few weeks. Good things. Challenging things. Draining things. Restoring things. I’ve been writing a lot, researching a lot, thinking a lot, which means I have to cut down on the amount of input from the outside world. That means less blogging, less getting on Twitter, because there is so-so much that is distracting (and distressing), and I can’t afford to be pulled in all those different directions.

I think something may be “up” with my parents. I haven’t heard from them in a number of weeks. My mother’s cards come on a regular basis, but my dad has stopped calling me every Saturday. That’s a change. I need to check in with them. He hasn’t been in good health, for the past year or so, and despite surgery that looked wildly successful, he’s still got additional issues — including diabetes, which will do a number on your brain function, if you don’t control your sugar.

I kind of dread it, actually. But I should call. I’ll find some time. I’ll make the time. It’s the right thing to do.

I’m not sure why, but the last couple of weeks have been pretty intense. Well, there was the big event a couple weeks ago, that had me leaving the state and “peopleing” with strangers and finding my way around an unfamiliar college campus (while I was nervous that my car would get ticketed or towed because I parked in the wrong spot without knowing it).

There was the doctor visit with my partner, who’s extremely anxious around doctors, and the new meds prescribed to her, which I needed to research (I found what I needed to avert some likely serious side effects).

And then there’s been the whole work thing, with the Big Project I’m on being generally doomed, from the top down, as managers battle for territory, and the underlings get the brunt of their poor thought process. If we were left to our own devices and didn’t get dragged into their territorial disputes, we’d have the whole thing sorted, by now.

But no. They have to jockey for position. Racing for the front and pushing each other against the rail. It’s tiresome. I feel like a horse that’s been ridden hard and put up wet.

We all do. And I wonder how long it will take, till we just throw the “riders” who are whipping us to go faster.

Maybe never. People need their jobs. I’m tired of this. I’m tired of the whole thing. It’s futile. It’s pointless. And I’m traveling down to HQ in a couple of weeks to continue the pointlessness. I hate business travel. It throws me off. It steals precious time and energy away from me, and it puts me in the middle of throngs of strangers who will trample me, if given a choice. Heck, they do it by default.

Well… what-ever.  I’ll just make the best of it.

Actually, I’m doing better than making the best of it. I’ve given up caring. I don’t give a damn, one way or the other, how things turn out. Oh, sure, I want the thing to work perfectly, but it’s literally impossible for that to happen, so I’m encasing myself in a protective shell of divine indifference and just getting on with my life, regardless of what happens around me.

Seriously, I’m beyond caring. I’ll do my part. I’ll pitch in and participate. I’ll fulfill my duties and my role to the fullest extent possible. But I’m not attached to the outcome, one way or the other. I didn’t ask for this project to happen. I got shoved into it by default, basically forced to turn a sow’s ear into a silk purse, and I’m expected to make it all work to everyone else’s specifications, even though I advised against it from the start, “raised red flags”, documented the risks, and so forth. I did my part. Nobody listened. At least, nobody at the top.

Maybe this works out. Maybe it doesn’t. What. ever.

I frankly have no personal interest in the whole thing. I’m not invested in the outcome. I’m oblivious to whether or not things are to others’ liking. All I care about is if I’ve done my best under the circumstances. I’m just “doing my thing” to the best of my ability, playing my part as is required, and letting go of any outcomes. It’s out of my hands.

So the project is doomed? So what? Who cares? Certainly not I.

And it’s wonderful.

So, yeah, I’ve dropped back a bit from life… Pulled back into my own little autistic experience… To work on some projects I’ve got going, and finally make some progress. I’m quite pleased with one of them. It has real potential. And there are several others that look promising, as well. Sweet. And these are all things I can do, myself, while I go through the motions of my everyday day-job, making a living, collecting a paycheck, getting what I can out of the situation.

Here, have a silk purse.

I have extra, from all the proverbial “sow’s ears” I have lying around.