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.

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A script for my #Autistic Monday morning

three abstract people figures talking to each otherI am not looking forward to going to work today. I worked from home all week, last week, and it was wonderful. I didn’t move as much as I should have, and I ate more than was healthy, but I got to rest when I needed to, and I wasn’t subjected to inane interactions, like I’m about to be, in a little over an hour.

I detest vacuous social interactions that serve no purpose other than to make other people feel less lonely. It’s a distraction. But I’ll do it.

The good part is, I’ve figured out how to do it without investing a whole lot of energy. If I just follow this script, I’m all set.

This is how it goes:

First, I see someone approaching me. It’s always best if I acknowledge them first, because other people are very reactive. They like having someone else set the tone of the interaction so they can just follow along.

Me (smiling and looking in their general direction): Hi! How are you today?

Them: I’m good, thanks! And you?

Me: I’m great! How was your weekend? Did you have a good one?

Them:  Something – something – something – something – something – something

Me (depending on their response): Oh, wow – that sounds great / frustrating / exciting (sarcasm used, if they had a terrible weekend)

Them: Yeah. Something – something – something – something – something – something

Me (whatever they happen to say): Oh, I know… Right?

Them: Laugh / meaningful look / some comment

Me: Tell me about it…

Them: Okay, well, have a great day!

Me: You too! Happy Monday!

 

And we’re done. That’s roughly how it goes.

Generally, I can get away with a few exaggerated expressions of “Oh, I know!” or “Right?!” that indicate I’m listening (maybe I am, maybe I’m not), and that I care. I do care. I actually do. But it’s a lot of energy, which I often don’t have, to get all invested in other people’s lives.

Especially when I fundamentally disagree with what they do with their free time and money.

I try not to belabor my interactions with judgment. Non-autistic people don’t understand, and it’s not a good use of time.

So, anyway, Monday awaits. I have to go in to the office today — Big Day for a project I’m working on, plus there’s some staff meeting I have to attend. Whatever happens, it won’t be boring. That’s for sure.

Although sometimes, boring would be fantastic.

Okay, off I go…

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.

Rebuilding my life with #AutismAwareness

school building in snow

It’s #AutismAwarenessMonth, and I’m already tired. Ha! Of course I am. Sheesh, the ongoing … onslaught… of misinformation, disinformation, and all these otherwise unaffected-by-Autism people weighing in with their observations… it all gets to be too much.

And yet, I can’t seem to look away. It’s like a train wreck. All month long. And it’s only the 4th of April. Good grief.

One of the really depleting things about this month, is that I become all the more aware of how much more difficult my life has been, because I had no idea about how being Autistic was affecting me, or what to do about it. I spent so, so many years struggling, not knowing what the deal was with me, not understanding that there was literally something distinctly different about me that put me at a disadvantage in some ways (and at an advantage in others). It wasn’t luck or happenstance. It was a structural difference in my makeup that set me apart and introduced specific challenges to me.

I had no idea. I had no awareness. So, I couldn’t manage my situation. I couldn’t adjust. I couldn’t find any patterns, because my mind was so turned around by everything that I didn’t know what patterns to look for. I couldn’t tease out the differences from one day to the next, and did that ever have an impact.

Well, that being said, now I know better. And now I can do better. True, I did not manage to finish college (despite earning 90 credits). Too much going on. Too much to overcome. Too little information on one and, and too much on the other. It’s rarely actually been a huge problem. With a few exceptions, where my advancement opportunities were limited because I didn’t have a degree, I’ve always managed to find good-paying work that let me make the most of my abilities. I have a “nose” for opportunity, and I’m really proactive and a dedicated team player, so I’ve always had that to fall back on.

But now I’m getting older, employers are relying on web-based resume intake systems, and without a degree, I can’t even get pasts the “electronic gatekeepers” to make my case for getting the job. Plus, if I want to change careers, which I’m thinking about doing, after 25+ years in high tech, I need a degree. Because taking credit for building out key features of a leading financial services website and optimizing technology just doesn’t have the same cachet outside this gilded cage of high tech.

I need something else to fall back on.

I’ve been looking for degree completion programs for years, but none of them were accessible for me. Either they were too expensive, or they were too time-consuming and the pace was dictated by the institution. I was expected to carry a consistent courseload for two years straight, which — if you’re me — is a clear warning shot across the proverbial bow. There’s no way I can commit to that workload with absolute certainty.

Can we say meltdown? ‘Cause that’s where I’d be — probably frequently — while scrambling to keep up / catch up. Call it Executive Function issues. Call it inconsistency. Call it what you will. It’d wreck me, for sure, what with my full-time job, caring for my dependent partner, serving on town boards, keeping my own interests alive, and keeping myself healthy and fit… on top of a degree completion program.

But I believe I’ve found a solution. I found a program that’s self-paced, that gives me credit for what I’ve done, and it lets me earn a degree in what I’ve been doing for the past 25 years. And it costs a fraction of what a traditional degree completion program would cost.

I’m a grown-up, with adult responsibilities and a full life. And I’m Autistic. So, I need to choose and act accordingly. I need to be constantly aware of my strengths and my limitations, to accommodate myself and not take things for granted. I took so much for granted, when I was younger, thinking that if I just kept pressing on in the same ways, I’d be able to eventually succeed. But I was doing things the way I saw all the neurotypical people in the world doing it. I tried to mimic what they did, and how they did it, assuming that I could just power through.

Untrue. I burned myself out, over and over. I overloaded myself, pushed myself to one meltdown after another, drank too much, got pulled into the wrong crowds, took the wrong jobs, stuck with the wrong schedule, and I got hurt. I crushed myself. And that was no good.

Now, I actually have a chance to turn this around, and that’s what I’m doing. I started the exploration process a couple of weeks ago, and I started the application process last week. I’ll work on my application some more today, since I have some time. And I’ll gear up for this process, the start of this new journey, with my limits clearly in mind.

It’s not that I’m going to let my limitations define me. Far from it. I’m just going to factor them in and manage them accordingly. If I know about my limits, and I know how they block me, it’s up to me to figure out how to either adapt or avoid them. If I’m in a position to actually do something about my situation (and I am), it’s up to me to handle things properly.

If my energy levels are dropping, I need to step away and recharge — and then bring myself back on point in the future.

If I’m getting overwhelmed, I need to step away and take steps to get myself un-maxed-out again… then resume what I was doing before.

If I’m able to work faster than the “norm”, then I need to kick it into high gear, because at some point, I may need to slow down. So, I have to plan and act accordingly, so I can keep ahead of things and make the most of my up-times to offset my down-times.

And so, I shall. With Autism in mind. Awareness. Acceptance. And action.

This next step (going back to school) has been a long time coming. I’m gonna make the most of it.

My #Autistic Social Advantage

Picture of ground half covered with snowThe snow is finally melting, in my corner of the world. It’s warm today, 50°F and 10°C, and it’s raining a little bit. Mist is rising up from the snowbanks as they melt and evaporate. The process always fascinates me, because it seems like it should take more energy or more heat to turn water into steam. And yet, here we are, surrounded by fog.

I’m so glad it’s Friday. It has been a really long week, and everybody I talk to at work feels the same way. We are all very happy the work week is nearly over, and since this is Easter weekend, a lot of people have even more time off. So, that’s good. Things should be pretty quiet today, especially this afternoon, so that means I can concentrate on my work without distraction. I might even get into my zone, if all goes well.

I’ve been thinking about how being autistic has helped me over the years. With Autism Awareness Week, the theme seems to be, how many people have been left behind and are not being helped as they struggle through life. I’ve had plenty of struggles, myself, and being denied a diagnosis for years really complicated things in my mind. However, objectively speaking, Autism has also been a huge advantage for me. And not necessarily in ways you would expect.

One of the biggest and most helpful ways, is how it makes me pretty much oblivious to what other people think of me. Now, in some cases, that is a real drawback. It doesn’t help me when I am in touchy social situations where I need to read people properly to get by. It also didn’t help when I was growing up and all the other kids were sending out magical signals about what they did and did not like, what they would and would not tolerate. I was persona non Grata a bunch of times throughout my childhood, and that really hurt.

On the other hand, now that I look back, I see that being on the outside didn’t actually stunt me the way you might think. It didn’t ruin my ability to bounce back, didn’t keep me from becoming resilient. In fact, being on the outside taught me many important lessons, and it really became an advantage for me. Because those experiences taught me how it feels to be on the outside, which I would never want to make another person feel. It made me a lot more sensitive to differences in the want more excepting of limitations, all of which have helped me connect better with the world around me.

Plus, I was really, truly happy being by myself, and I took so much obvious pleasure in the things I was interested in, and I devised a way of life that worked for me, so other people were intrigued, and they actually responded favorably to me after a while.

In fact, over the years, my outsider status has often worked in my favor. I have been outside the “in group” More than I have been on the inside, but because I’m actually fine with it and I seem happy and content and fulfilled in it, it piques the interest of others who want to enjoy life the way I do. They see me enjoying myself, being happy, being content, and they want to know what all the excitement about. I will happily share what fascinates me, any old time, and one thing I seem to have learned from my autistic grandfather, is how to translate my passion into excitement for other people. So, my geeky nerdy obsessions with obscure stuff really truly helps bridge gaps between me and others. Anybody who’s looking for a little tidbit of trivia they can use to impress people a cocktail parties is welcome to ask me for my input. Invariably, I can find something they can use later to improve their social status.

Everybody wants to be happy, everybody wants to be accepted, everybody wants to feel like they belong. It never really mattered to me that I didn’t belong to certain groups, or that I was not the most popular kid in the class or at work or in town. What did matter to me, was that other people felt welcome, appreciated, even loved, when they were around me. I learned how to transfer my sensitivity about being left out along with my deep interest in life, other people, and how things work to the social scene around me. And because I was Autistic and could not read negative reactions from people, I found myself able to be open to others in ways that most people can’t.

I can’t emphasize enough how helpful this has been. Alexithymia, or the inability to sense emotions, has actually worked in my favor, in that I have defaulted to openness and acceptance, if I needed to fill in any blanks about what people thought about me. In fact, there have been many, many times when other people have approached me with anger, judgment, aggression, or other negative emotions, and because I could not sense them, I just assumed they were friendly, and I treated them as such.

The amazing thing is, those other people backed off their negativity and took my positive lead. They realized that I was not intimidated by them, I was not put off by their behavior, I was not going to fight with them or stir up more trouble, and I really just wanted to interact with them like decent human beings. Because I had a better and frankly more enjoyable solution to the dynamic, they followed my lead.

I sincerely doubt any of that would have been possible if I were neurotypical. If I were able to read the aggression the other people feel, if I were able to respond to their emotional state with a response like what they were putting out towards me, I’m sure my life would’ve become very different and taken many darker turns. But the fact of the matter is, people look for leaders, and they look for better solutions in life. And if you lead them in a way that steers them away from their bad behaviar, on an individual basis, In personal encounters, change can actually happen.

Of course, I can’t speak to systemic inequities, as well as racism, classism, bigotry, and all the other isms that drive modern human behavior. Those are larger, more complex issues that deserve a deeper discussion. But in my own personal life, I have found that Autism actually gives me an advantage when it comes to dealing with people. Provided that I take the lead and I set the tone, really positive changes can happen whenever I encounter people who could potentially be a problem.

It’s not for everybody, and not everybody has interest, or wants to develop the skill, but I can tell you that it works. I can also tell you, I didn’t learn how to do this overnight. I didn’t magically receive divine dispensation of this glorious secret. The set of skills was hard-won over many decades of trial and error. But right now, in my current life, it works for me.

And that’s plenty good for me and my life.

Refresh connection with Facebook? Hmmm…. maybe…

Message from WordPress to refresh connection with Facebook
This message comes up, every now and then, when I’m on WordPress.

Before you hit Publish, please refresh the following connection(s) to make sure we can Publicize your post:

And again, I need to consider whether I actually want to reconnect with Facebook.

I’ll admit, I’m reluctant. For all they’ve done (and not done) in the area of privacy and protecting their users, part of me just wants to drop them permanently and walk away.

Then again, I don’t really spend much time on FB, and it lets me get some of my writing out to a broader audience. So, it serves a purpose. It certainly does that. And I have so little actual personal information on there — nothing that I don’t already put on WordPress and Twitter — that whatever they may want to do with my info… good luck to them.

I think I may be Facebook-inoculated, because I’ve been in the high tech / online scene for so long. I worked in financial services for years, building websites to let people manage their money online, and I still, to this day, don’t think it’s a bright idea to do any of that stuff online. The fact that more people aren’t robbed… well, that surprises me daily. I’ve worked in online marketing, have built websites intended to be super-secure, and I know how the stuff is put together behind the scenes.

It’s never been nearly as secure as they say it is, and it’s always been a bit of a fools’ paradise (note the s-apostrophe, meaning all of us fools), so I’m not overly rocked by all this. Plus, it’s not like anyone didn’t already know Facebook’s “default mode is sharing”.

D’oh.

As in D’ohn’t come crying to me, when you finally realize that we weren’t just whistling in the wind about your life being up for grabs on social media.

Oh, is that mean-spirited? Non-compassionate? Maybe so. But seriously, it’s time to put the big-kids pants on and take responsibility for all this. Not just wail and gnash our teeth over crap we’ve been warned about, but chose to ignore.

Sigh.

Well, anyway, I’m having a lovely Sunday inside, looking out at the crows trying to unhook the suet cage from my bird feeder. They figured out how to get it off before, so I used a carabiner to hold that sucker in place. And since then, they haven’t been able to do more than perch on the top and peck at the suet. Frustrating for them, I know, but the woodpeckers thank me.

Yes, a lovely Sunday… I’ve got my fuzzy blanket thrown over my shoulders, and I’ve got my music on. Cozy, warm, and relaxing with some really wonderful reading I’ve been doing. An old, long-lasting interest of mine has cropped up again — iconoclastic Zen practitioners of the 16th and 17th centuries in Japan — and I’m digging into old Samurai stories with a gusto I haven’t felt in quite some time.

How pleasant. How incredibly pleasant.

And then, because I did so much yesterday and got a lot of errands out of the way, I can lie down and take a long nap this afternoon without needing to set an alarm. My favorite kind of nap — also good, because if I don’t set my alarm, then my mobile won’t be beside my bed, so I won’t spend an hour scrolling through Twitter, when I’m supposed to be resting.

I’m spending less and less time on social media, these days, including Twitter. It’s all turned into a cultural battleground, which is tiring. Seriously, they need better filters. I support the changes taking place, and I support the people standing up for their lives, but sometimes I just need a break, and social media has provided me with that in the past. Breaks are coming fewer and farther between, though, which is unfortunate.

Or is it? I need to unplug more, these days, anyway. I’ll just treat it as a great opportunity to chill and give all the fight-flight a rest.

Oh, you know what?

That got me to thinking… Maybe my decreasing ardor for Activist Twitter is due to my decreasing hormonal inclination to give a damn about stuff that used to drive me. Menopause seems to be cutting me a break.

That could explain a lot, actually.

But now it’s time to retire again to my cave-y little corner of the world, ensconce myself in a heady enclave of histories, myths, legends, and conjecture about what was going through people’s minds, on the other side of the world, 400 years ago.

Fun!

Catch you later.

Maybe on Facebook 😉

Why this #Autistic person bothers with eye contact

microscope front view looking into the eyepiecesI’m not a huge fan of eye contact. It’s painful for me, if I don’t know the person I’m interacting with. It’s a veritable minefield, chock-full of potential disasters, if I “do it wrong” — look at someone too long, don’t look at them long enough, “send the wrong signals”, etc.

You know the drill.

To say I hate making eye contact, would be an understatement. I loathe it. I don’t see why everybody has to do it, to begin with. I know the rest of the world is there, even if I’m not Looking It In The Eye. I can hear without staring at someone’s eyeballs, thank you very much. And it’s just so painful at times…

But still, I “do eye contact”. And it’s for totally self-centered reasons.

See, I’ve found the thing with non-autistic people is that they tend to be driven by unresolved trauma — particularly childhood trauma at the hands of irrational / explosive parents. There are so many non-autistic folks whose every action and reaction is driven by ingrained childhood trauma responses, that they literally think it’s “normal” for them to behave the way they do. After all, if everybody’s getting freaked out by certain ideas and behaviors… if everybody’s reacting in the same way to ideas and aspects of life that might be threats… if everybody’s jumping on the proverbial band wagon to overreact to their triggers, then that must be normal, right?

I’m not going judging anybody, I’m just making an observation. And considering my own “trauma load”, I can totally relate to others whose lives are so heavily dictated by stuff that happened and/or was done to them.

Okay, back to eye contact.

I’ve lived the last 26 years of my life with someone who has to make eye contact, or she feels immediately threatened. That sense of threat triggers a whole cascade of critical-thought-inhibiting stress hormones that prompt her to react and think about situations in ways that feel correct, but objectively speaking are counter-productive and (dare I say it?) damaging. The threat response kicks off before she can even think about it. It’s instinctive. And while her instincts may have saved her, when she was a little girl, they’ve not really helped her a whole lot in the course of her adult life.

Then again, maybe they have… Because everybody she deals with seems to behave the same way, and because her behavior is familiar to others, she’s wildly successful in a social sense — far moreso than I am.

Anyway, her need for eye contact seems to trace back to her early childhood, when her parents were really dangerous to be around. The main signal that they were about to get scary, was when they went silent and wouldn’t make eye contact. That signaled that they were about to become A Problem. They were about to become hazardous to her health.

If they were making eye contact and being verbal, that signaled that they were Safe.

If they weren’t making eye contact, and they weren’t talking, that signaled that they were Not Safe.

And if they weren’t Not Safe, some pretty terrible things could happen — the kinds of things that scar you for life and get ingrained into your wiring. I’ve been co-habitating with the effects of that sort of wiring for over a quarter of a century, and the more I understand it, the more inclined I am to accommodate my partner and make the eye contact she needs to feel safe.

Even if it isn’t always (or ever) comfortable for me.

I also keep this in mind in the world beyond the walls of my house. There are so, so many people who’ve been traumatized by silent parents who stop making eye contact right before they explode. We have no idea who those people are, and how many of them there are. And when we don’t make eye contact, that’s the rough experiential equivalent of demanding that Autistic people Do make eye contact. It’s painful. It’s frightening. And it stresses people out.

So, what’s the solution? I can’t speak for anyone else, but this works for me:

  1. Compassion for others I’m interacting with. Understanding that if they need eye contact, then they might have gone through some pretty rough stuff at the hands of people who stopped looking at them just before they started to beat the crap out of them.
  2. Accommodating them accordingly. Standing in a way that faces them, holding my posture in a way that communicates I’m friendly and I’m not going to attack them. Using prosody — exaggerating the “lilt” of my spoken language to calm them down, which it actually does.
  3. Accommodating myself. Looking intermittently at their eyes, but not enough to stress myself out… mostly focusing my gaze on parts of their face that are near their eyes, so they think I’m making eye contact, but I’m really not. Stimming in ways that are hidden, yet effective.
  4. Remembering — always remembering — that whatever triggers they’re dealing with, they may not recognize because they’re so commonplace and so “normal”. And as a result, they have practically no awareness of those triggers and the effects they have on people like me.
  5. Just hanging in there, till it’s over.  No, it’s not pleasant. Yes, it can be pretty damn’ uncomfortable. But very little in my life is simple and straightforward and 100% pleasant, so this is no different from just going about my daily life. The effort is worth it, because it makes it possible for me to work and play and interact with the rest of the world and have the kind of life I want.

It’s not for everybody. But this works for me.

And again, it’s worth it.

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

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

IX. Consider how quickly all things are dissolved and resolved

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

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

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

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

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

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

That’s certainly something.

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

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

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

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

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

 

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

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

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

….

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

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

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

(Lots of applause)

IM: Shall I respond?

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

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

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

It changes everything.

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

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

The bad part, is that we have to.

 

Sickness and lameness and hindrance, oh my…

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

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

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

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

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

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

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

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

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

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

So there.

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

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

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

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

Of course it is.

It’s life.