When it all comes together… eventually

person climbing up hill through snow carrying a snowboard

Well, that only took 15 years…

I’ve been working on a set of ideas — all related, each with great potential — for over 15 years.

And finally it’s all coming together.

That’s one of the reasons I haven’t been blogging on here a whole lot. Finally… finally… things have gelled with me enough to actually take shape in a form that actually works.

I know I’m being cryptic (and I have to be, because I’m in “stealth mode” with this project), but basically, I’ve written and conceptualized a whole lot of stuff over the past 15 years that I can now actually put into action.

The ideas all work together. And they’re useful to a whole lot of people. And I have access to the technology and skill (and customers) to make this fly.

And that’s how it goes with us Autistic folks, sometimes. We’ll have all these great ideas… very detailed, thorough, grounded, practical, transcendental… and it can take us years and years to finally fit them all together into a way of being, working, thinking, living, that’s superlative. Super fantastic. Transcendental.

But it takes time with us. And we have to have the right conditions to work under. If we don’t have the time and proper conditions, it can kill off our ideas, our drive, our ability to think. Sometimes it kills us, period. However, if we’re given the right support and the right environment… well, the sky’s the limit.

Yeah… I’m not sure “support” is the word I’m looking for. It makes us sound dependent. Needy. Like we can’t do it on our own.

Look, we Autistic folks can do a vast amount of things on our own. If the world isn’t constantly trying to kill us. If it’s not dead-set on destroying us, because we’re different.

I was fortunate to grow up in an Autistic household, surrounded by Autistic friends and neighbors. It wasn’t “weird”. It was how we were. And neurotypical people were the “weird” ones. I’m lucky that way. I grew up knowing how to love my differences and let my freak flag wave wild and high. I also didn’t give a good goddamn what anybody else thought about me, my ideas, or what I did with my life. So I had that going for me, as well.

But I know an awful lot of Autistic folks get stuck growing up in the mainstream, surrounded by people who are bound and determined to make them pay dearly for being different. That’s pretty sucktastic. And as soon as I got away from my family and the area where I grew up, I ended up in that world, too. It can be awful. So, when I talk about things being sucktastic, I know whereof I speak.

Anyway, I have to get back to working on my Grand Plan (I love planning!), so I’ll cut this short.

Bottom line is, with Autistic folks, it can take us a long time to develop… ourselves, our skills, our knowledge, our expertise, our understanding of the world. But when we do… Look out. We are a force to be reckoned with.

Okay, that’s enough for today. Now, go out there and do some good in the world for yourself and others.

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Getting back to what restores me

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

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

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

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

I have a lot of them.

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

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

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

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

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

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

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

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

Like coding.

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

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

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

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

Until now.

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

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

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

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

One thing at a time.

One step at a time.

One day… week… month at a time.

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

When being #Autistic was a very, very good thing

child standing in front of a body of water, looking out at sunset with rays of light showering down
I wasn’t alone in my wonder at the wonder of it all

It’s been an incredibly busy past 4 weeks… or has it been 6? Business travel, deadlines at work, projects not turning out the way they should, people making excuses, left and right, and the very people who are making a mess of things taking control of all the projects.

Ah, me… I’m at a loss, as are many of my co-workers. It’s incredibly dispiriting. But at least I’m not alone in my despair. I have plenty of company (fortunately or unfortunately).

One of the benefits of being too busy to think about much, is that I find out what matters most to me. Because that’s the stuff that bubbles to the top of my thought process. That’s the stuff that works it way out, like rocks emerging from the soil in the New England spring. All the rest of the stuff I’ve been thinking about is apparently compost… it will go through its decomposition and melt back into the background of my life. But some things have “sticking power” and won’t go away.

It’s those things that I’ve been thinking about.

So, of course I’ve been thinking a lot about my childhood and how it set me apart. When I was younger, I was tempted to believe that my lot was terrible, painful, horrible. That it was too punishing for words, and oh, how I suffered. It’s true. I did suffer. But that’s just what happens, sometimes, and I’m through with thinking that suffering is a sign of aberration, of something being amiss. Nope, sometimes that’s just how things go. And the magical part of it is, I get through it. All of it. Just because it’s uncomfortable, even painful, doesn’t mean it’s necessarily a bad thing. Because, after more than half a century on the earth, I now realize that pain is very much a part of life — but suffering is something I make worse, myself. By judging and resisting that pain.

It’s much more productive to take a Meh attitude — a Meh-titude, if you will — and get on with it. Get my mind off the anguish (much of which I’m causing myself) and just get on with living.

My childhood, in retrospect, really worked in my favor. It prepared me for the world as an adult. It made me into the person I was. And it was full of wonder… precisely because I grew up in an autistic household which absolutely, positively accepted my Autistic traits for what they were and revelled in them, rather than pathologizing them.

Don’t get me wrong. It wasn’t all delight and bliss. My childhood was, in fact, extremely difficult, both inside and outside the home. My family got a lot of things really wrong. But the parts that my family got right, they got really right. And I’m a better person for it. So many of the “disordered” behaviors — repetitive motions, echolalia, alternative play styles, talking a “blue streak” about passions, having passionately focused interests at all, even my frantic energy — they were all recognized and welcomed as the things that made me what I was.

My Mom, in fact, loves to talk with exuberance about so many of my behaviors that qualify me as Autistic. Singing a song to myself over and over and over for days at a time. Dismantling a toy vacuum cleaner that was given to me, so I could play with it my own way. Immersing myself in Native American studies, learning about trees, animal tracks, animal scat. Talking, talking, talking some more about the things I cared so deeply about. And running wild, all over the place, making my Mom nervous, but never actually getting hurt.

My parents remember those things as wonderful. Because they were me. They could also relate. And for all the things I did wrong and was punished for, at least — at the core — they recognized and loved me for who I was. Because that was me. And they’d both been punished enough as kids for their own Autistic traits, that they never wanted to do that to their own kids.

That’s one thing they certainly got right.

And I’m glad I can see it now. Because for years, I got so hung up on the things they got wrong, for their shortcomings, their failings, their neglect and abuse, that I missed the ways they were so good for me, so healthy, so helpful and supportive. And although I’m still at odds with the community of my upbringing (they still seem a bit cultish to me, to be honest), I can still see there was a lot of good in it for me, that helped make me who and how I am.

It helped make me healthily Autistic, in so many ways. So much so, that I have to just look at people (or shake my head when I’m online) when they talk about Autism only being a problem. Or only a disorder. It can be problematic. It can be disordering, even disabling. But in and of itself, Autism is not the enemy. And it’s not only one thing.

It’s not only one thing at all.

It’s many things. And we can choose for ourselves what we’ll do with the full spectrum of experiences. That much is very clear to me.

With that being said, it’s a gorgeous day. I have an all-day conference call I need to attend — and no, I’m not looking forward to it. It’s part of the job. It doesn’t happen every day. I’ll survive. Plus, I get to work from home while I’m doing it, and I can sit out on my deck and enjoy the breeze and sunshine, which is wonderful and delicious today. There are worse ways to make a living, that’s for sure.

So, off I go…

About that Walk…

girl walking in the woods

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

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

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

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

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

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

My own little 21st Century heresy. Delicious.

I had it all planned.

And I almost made it.

Except, I didn’t.

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

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

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

What is up with that? It makes no sense.

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

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

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

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

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

So much simpler.

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

And no one can hear me scream.

Sigh.

So much for my morning.

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

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

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

Not yet.

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

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

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

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

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

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

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

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

at last – my cup of really good, really strong coffee

overhead view of cup of coffee beside laptop keyboard on a wooden tableI spent the past four days on a visit with my parents. I didn’t spend the entire time with them, because my partner and I didn’t meet up with them till late afternoon on Friday, and then we had the weekend with them, and they drove home early yesterday morning.

So, all in all, I had about 67 hours with them, with additional time tacked on, before and after to prepare… and then decompress.

It’s a lot to take in. My parents are very much on the Autism Spectrum, and that means they’re alternately delightful and exasperating when it comes to interacting with them from my corner of the Spectrum. They have their ways of doing things, which are (of course, to them) the Only Right Way To Do Things. And everyone who doesn’t do things that way — especially if it’s us kids — is Wrong and Must Be Corrected.

So, I spend a lot of time around my parents on the defensive, never sure what I can or cannot say, because they’re so enthusiastic about promoting and defending their Proper Way Of Doing Things — and punishing everyone who doesn’t comply.

Ugh, it’s exhausting. I love my parents, and we’re getting along better than we ever have in my 52-year relationship with them, but it takes so much out of me.

Plus, when I’m around them, I can’t do my regular routine. They’re so locked into their way of doing things, they have to constantly hijack me to get me on their schedule. And their pace is grueling and break-neck — always going at top speed, always with the brain dumps about their special interests, always talking, talking, talking… which is utterly exhausting when I’m tired and non-verbal. The more tired I am, the more non-verbal I become, so you get the idea…

Now that’s over. My parents went home yesterday morning, and my partner and I had the day to decompress yesterday. The weather was amazing. I actually got to walk the beach and explore at my own pace. And there was no pressure to stick with my parents’ schedule, because their anxiety won’t let them do anything different.

We got to decompress. I got to relax. I had to do a conference call for work, yesterday afternoon, but that was fine, because it was familiar and got me out of my head.

And today, I woke up in my own bed, I got to have my exercise — first thing — I’ve had my breakfast… and now I get to drink my half mug of extremely strong coffee.

Everything’s getting back on track, and that’s a very good thing, indeed.

 

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

human silhouette on beach with sunsestNot 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.

Raised #Autistic – Lessons Learned

books hanging from bookstrapAll the talk about how Autism diagnoses have skyrocketed in the last 30 years, overlooks one key factor:

Once upon a time, the Autism Spectrum wasn’t pathologized. It was developed.

It was very much a part of life, and there were institutions and mitigators in place to help weave that neurotype into the overall fabric of life.

I was raised in an area that’s chock-full of Autistic folks. Is this abnormal? Not on your life. In fact, it’s the norm. And every aspect of growing up is/was geared towards training individuals how to be responsible members of the community. It helps that it’s a rural area, where everybody has to pitch in, no matter what, so nobody gets a pass to completely drop out of society because of any difficulties they may have. Society needs them, it’s made clear. And whatever they can do — in whatever measure — is not only needed, but required.

Take my aunt, for example. She just passed away last year, and she was probably one of the most “obviously” Autistic persons I’ve ever met. All the classic behaviors, all the classic traits… that was Aunt M. She definitely did not have an easy life, but she lived by a code that placed others first at all times. She had a quote on her dresser that effectively said, “Whatever sufferings I may have, others have it even worse. And in the end, the question is not how much I’ve gotten out of life, but what I’ve given to those who are struggling more than I.

That’s the ethos I was raised with overall, and I can tell you that Aunt M personified that, each and every day. She had her challenges, of course. My mom had to constantly watch out for her, from the time they were both young girls, till the day she died. She was bullied, she was threatened, she was abandoned. And she had intense issues with anxiety and social interactions.

But she lived her life. She lived by principles. And in the end, he had such an important place in life, her funeral was attended by close to 100 people, many of whom relied on her for many things throughout the course of her life.

I was raised in the same way — principles. Be a responsible member of society. Put others first. Realize that others have troubles, too, and rather than thinking about what I need to get out of the social equation, I need to put myself out there and be as helpful to others as I can. It’s not about me. Yes, I have intense suffering and challenges at times. Yes, my life is a non-stop parade of pains and joys — often so intermingled, it’s hard to tell which is which. But in the end, what I contribute to the world is far more important than what accommodations I get to secure my own happiness.

Now, you might dismiss this as being some lofty approach by someone who’s not impacted all that heavily by Autism. But you’d be wrong about that. Everything I have, everything I can do, it’s all been hard-won and paid-for at a steep price. And I’ve been around long enough to realize what a toll it’s taken on me, over the years.

Does that toll matter? Nope. The bottom line, for me, is what I add to the overall human equation. I’m responsible for my corner of the universe. I have to keep it clean and orderly and do my best to not be a liability towards others. I have to keep my own suffering out of view, because what I have to give is far more important than anything I feel I need to take.

All those years, when I was in excruciating chronic pain and some days couldn’t get out of the bed… the short time I was homeless… the times when I’ve had to quit jobs and move on, because the environment was so painful I couldn’t tolerate it anymore… Through all the meltdowns, the shutdowns, the touch-is-pain moments… The one thing that kept me going was that it wasn’t only about me. I had to get up and go to work to support my household. And if I couldn’t manage a full-time job, then I had to find a regular source of income that let me work part-time and still make enough to pay my rent.

The thing that carried me through all those years of intensity and hardship, was my upbringing by parents, grandparents, and a wider community who were all Autistic. Who knew what it meant to struggle, and who still pressed on and pushed me to deal. They didn’t let me off the hook. They kept at me, and kept reminding me of what was Right, what was Wrong, and urged me to do the Right thing. Even when it was impossible, they still demanded that I do my best. No excuses. Just get on with it. Yes, life is painful and awkward, but that’s what teaching and training were all about. I had to learn. I had to be taught. I had to be raised.

There was never the assumption that kids already inherently knew the right thing to do. There was the assumption that adult life is challenging and requires skill, and like any skilled endeavor, that takes training and practice and continuous discipline. The skills I have now, which have allowed me to live a really full life and experience so much that many people only dream about, they didn’t magically emerge from my pristine primal state. They were abilities that were identified, prioritized, and emphasized as the sort of thing that all adults do.

And there was no argument.

Yes, it was tough. Yes, it was challenging. Yes, I still have leftover “stuff” from all those years of training. I was enculturated into an Autistic society, and there were Rules and Regulations for everything. It was rough, at the time, but all the hard lessons have made it possible for me to live my life… regardless.

The skills I developed at just getting on with things, for putting others first, for making the effort to be a contributing member of society — even when I was disabled — made all the difference in the world. Society has a way of looking out for those who support it and contribute, and that’s always been my “safety net”, if I even have one. I make myself useful to others. I contribute. I’m not perfect, I’m pretty weird at times, I’m Autistic, I can be pretty off-putting at times. But in the end, my goal is to make myself an asset to the world around me, not only devote myself to getting my needs accommodated.

That’s all because I was raised by Autistic folks. Those were the Rules.

’nuff said.

“Say what?”

hand near ear with vibration

Well, this is interesting… I’m realizing more and more, just how much my hearing difficulties have affected my day-to-day life, interactions with people, my willingness to engage with others, socialize, try things, and get an education.

I mean, yeah, my overall sensory issues have had a really … dampening… effect on me. Experiencing light touch as pain can be a source of constant distress. Balance issues put me in a constant state of hypervigilance, when I’m “off”. Light and sounds can be painful, too. There’s a reason I go food shopping every day — so I only have to be in the store for 10 minutes at a time (and yes, it works!). All of that can add up over time to a pretty significant trauma load. Even the little traumas, if they aren’t cleared out of my overtaxed system, build up to something bigger and badder than the individual elements, themselves.

And then there’s my hearing. Such as it is. Most of what I hear, if I’m not listening intentionally, is a muffled mmmmmfffftgrrrrlllllnnnnb. And yes, it is maddening for people who deal with me to have to repeat . themselves . every  . single . time . they . say . something . to . me . unannounced. I really feel for them. Because sometimes you just want to feel like you’re being heard, without having to repeat yourself every . single . time.

But what can I do? Unless I’m paying attention to what someone is saying to me, I don’t pick it up. I just don’t.

And it’s getting to be more and more of a pain in the neck. As time has passed and the high tech industry has evolved, I’m finding myself in more and more “leadership” positions, where I’m directing a bunch of lower-paid folks (often on the other side of the world). I’m also responsible for communicating progress to higher-ups. And yes, this is a massive pain in my hind-parts, because those are the least-capable parts of me — phone calls with people who have thick accents over bad internet connections… distilling all the details of the past week in can-do Powerpoints that press all the right “comfort buttons” in hyper-controlling people at a higher pay grade than myself… Keeping lines of communication open with people of all types…

What did I do in a past life to earn this steady stream of demoralization and practically built-in failure?!

I ask you…

It really is kind of funny, if you think about it. Either that, or cruel. Good thing I’m post-menopausal and no longer hormonally inclined to fret about not getting everything right. Good thing I care a lot less about what other people think, and I’ve lived in my body/brain long enough to know not to trust all the terrible things I say about/to myself. They haven’t fired me yet, so I guess I’m doing okay. Plus, I’m ahead of the game, because even at my worst, I do a better job than a lot of non-Autistic folks do when at their best.

So, I’ve got that going for me.

The only problem is… I can’t hear for shit, sometimes. Seriously, I can’t. I don’t think it’s gotten worse for me than it was when I was younger. It’s just that now I have to talk to people a lot more. For something like 15 years, I was a developer, so I could just communicate with my computer and code. Not worry about the people stuff. And I wasn’t saying “How’s that? Can you repeat please?” every 1o minutes.

Ha! I should count how often I do that, these days. Might be eye (and ear) opening.

Anyway, I realize more and more, these days, just how much my hearing difficulties have affected my life. I avoid all kids of stuff because I might not hear properly, and I might A) make a fool of myself, B) get into trouble, or C) actually be in danger.  I can’t do work that involves other people and power equipment, because I might not hear a warning, and I might lose a finger… or an arm. That’s a bigger loss than I like to admit, because I love manual labor. And I would love to be able to support myself while working with power equipment. But at this point, I don’t think that’d be safe.

I also don’t go out much, because I might have to interact with people, and the only thing more lonely than being around people who aren’t trying to connect, is being around people who are trying to connect, but I have no idea what’s going on, because I can’t hear them properly. Sure, I can cue the canned greetings and response, but I’d really like to be able to do more than that. But people just don’t have the time. And when I keep asking them to repeat themselves, they seem to get tired of dealing with me.

I’ve been thinking about talking to my doctor about this. I probably should, because maybe there’s something to be done. I really worry about interactions with the police and other first responders, not to mention other authority figures. Having trouble hearing is a great way to get shot by the police, based on recent history, so yeah — in the interest of living a full life, I should probably look into this.

I just have to prepare properly. I think I’ll write up a description of my symptoms for my doctor, describe my difficulties, and ask her if there’s anything to be done. It might be nice to have some sort of assistive device that could block out all the ambient noise, so I can concentrate on what’s being said to me. The idea of wearing a hearing aid worries me, first because of the distracting feel, second because it can call me out as vulnerable and people might try to take advantage of me, thirdly because I really don’t want people to pity me and treat me differently.

But other people deal with that all the time, so maybe I should quit being so squeamish.

Anyway, that’s my latest “thing”. The hearing situation. Or inconsistent lack thereof. I’m going to learn a little bit of ASL, I think, because I’ve been wanting to do that for some time, now. It’s something to add to my overall skillset. I need skills. And I also need to widen my world a bit.

It’s all an adventure, isn’t it?

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

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

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

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

Something must be up in the world.

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

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

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

Me? I want to actually accomplish something.

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

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

In search of my flow state

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

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

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

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

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

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

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

So… no. Not that.

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

It’s a little depressing, actually.

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

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

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

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

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

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

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

And seriously, this is no way to live.

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

{pause to take a breath}

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

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

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

Hm.

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

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

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

So, there is hope.

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