To live a consistently constructive life

stairs outside buildingOh, lord… I’ve been caught up in that high-tech mythos that Everything You Do Has To Have Global Impact, or it just doesn’t matter.

Augh! Pressure!

Huh. How ’bout that. I’ve been thinking a lot about how my life has unfolded, and I’ve been feeling badly that I haven’t Made A Global Impact, the way we’re expected to do, these days.

No matter what we do, these days, we’re supposed to Go Big. Especially online.

We’re supposed to “generate content” that gets lots of views / likes / responses.

We’re supposed to “engage” on a global scale, and that’s allegedly going to change things.

We’re supposed to Go Big Or Go Home. And anyone who doesn’t aim for BIGness is a liability and a drain.

Huh. How ’bout that.

As it turns out, even after being in high tech for 25+ years, I’m deeply skeptical of the whole promise around dramatic, lasting global change. If anything, I’ve become more skeptical. Yes, it’s possible to have a global impact. And yes, it is possible to really make a huge difference in the world. But will it last? Will it have the intended results? It’s still too early to tell.

Plus, the way we measure what does and doesn’t matter seems pretty much based on numbers linked to volume (views, likes, sales, etc), and that doesn’t actually show us what kind of impact we really have in the world, qualitatively speaking.

See, the difference I want to make is about quality, not quantity. I don’t want to have to worry about volume of likes and views and shares and whatnot. I just want to do what I do, and have it make a difference. I want to do something constructive, every single day, and see the tangible results of my work.

I also need to provide for myself, pay the bills, and keep the money coming in, so I don’t end up living on the street (that happened to me years ago, and once is enough for one lifetime, thank you very much). That’s been a huge concern of mine. But I just ran the numbers for the trajectory of my financial situation, and it looks like I’m actually going to be in good shape, provided things stay relatively stable over the long-term. The big opportunity for me are the years between when my house is paid off in another 12 years, and when I am slated to retire, another 10 years after that. Once my mortgage is taken care of, I’ll be able to save most of what I earn, and I’ll be doing that pretty aggressively.

Of course, all this is assuming that I continue to be employed… that I can keep earning at an acceptable rate. But honestly, since I’m a little on the low end, earnings-wise, I’m a bargain. So, I get to keep my job. It’s easy to price yourself out of the global job market. Don’t want to do that.

But it’s not just about money. One of the key ingredients of my ongoing employment is making a substantive, positive difference in people’s lives on a daily basis. If I contribute to the well-being and success of people I work with on the job, they have incentive to keep me around, and even advocate for me. Making a constructive difference means I’m contributing. It means I’m integrated into the ecosystem I’m operating in. It means there’s a reason for people to keep me on.

And this is where being Autistic keeps things interesting. See, I didn’t even realize all this until somewhat recently. I’ve been in the everyday workforce for 30 years, and it took me this long to comprehend all this. I mean, intellectually, I understood the principle of making yourself useful and contributing. But it hadn’t really sunk in about how my day job fits that focus in my overall life. I strive to help people I meet outside of work — but helping people on the job? That was of no interest to me, quite frankly. If anything, other people were an intrusion and a drain to be avoided at all costs.

For so many years, I treated my day job as just that — a job, a way to make money to fund the things outside it — the things that really mattered. I wasn’t interested in getting invested in the relationships with people I worked with, because I just didn’t see myself as part of it all. I was too cut off, too separate, too intent on protecting myself and making sure I had what I needed, regardless of how that impacted others.

But now, I realize that what really matters to me, is living in a comprehensively connected way, finding paths to contribute and be a part of something bigger than myself. While I’ve never before considered my job worthy of full investment, now that’s totally changed. It was partly because I was so busy managing my Autistic issues without having a full understanding and appreciation of them, how they impacted me, what impacted them, and so forth. I didn’t have a whole lot of bandwidth to get personally invested in what was going on — especially because so many jobs I’ve had involved long commutes and really tough environments which were loud and open and constantly challenging.

Now, however, I have a job where I can work from home whenever I need to. That means I can often take a nap when I need one. And I get a break from the busy-ness at the office. I don’t have to drive in rush hour traffic. I don’t have to constantly make eye contact and figure out social interactions. I can relax… Even lie down, if I need to, while I read and answer emails on my mobile phone.

And that makes all the difference.

I can take care of myself. And I can take care of my work, my relationships, my future. The thing, too, is that I notice that others I work with are doing better when aren’t stuck in the office 5 days a week, as well. I find that people who work really effectively in a remote environment can be more mature, better at managing their time, more motivated, and more adept at building and sustaining relationships than people who have to be at an office to do their jobs. So, the types of people I’m working with are also more compatible with me.

It’s a win. For everyone. Especially me.

So, while I’ve been feeling a little “slacker-like” for not having turned the world upside-down with my dramatic innovations and whatnot, I’m finding that I’m much happier just tooling right along, taking care of myself, taking care of my relationships, taking the pressure off. Just living my life… Doing something meaningful each day, wherever I am, whatever I’m doing.

It all matters. It’s all connected. And after so many years of stress and strain, I’m finally really getting it on a deeply felt level.

And that’s a good thing. A very good thing, indeed.

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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.

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.

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.

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.

“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?

Do #Autistic people *have* to die earlier than non-autistic folks?

New York Skyline with ice floating in riverYesterday I came across a really thought-provoking piece by Sarah Kurchak, I’m autistic. I just turned 36 — the average age when people like me die.

The stress of living with autism is exhausting.

On March 21, 2017, CNN published an article on a new study from the American Journal of Public Health that found the average life span of an autistic person is 36 years. I wasn’t shocked by this news. I know how dire things can be for so many of us on the spectrum, but that number struck me for a very specific reason. I had just turned 35 the previous month.

Since I learned this news, I’ve been anticipating the milestone of turning 36 with a mix of confusion, dread, and a host of other feelings I can’t quite articulate. I’ve had more existential episodes than usual, brooding about the meaning of life. It’s been a lot like a midlife crisis — except that (I kept thinking) my own midlife might have happened as long as half my life ago. The average age of death for autistic people who live to adulthood might be older than 36 (and as of now, there is still no age-specific data). Still, the figure from the research journal haunted me.

At some point between that moment and now, I made a pair of promises to myself:

1. I had to make it to 36.

2. Once I did, I needed to do something to mark this morbid accomplishment — perhaps writing something to help the next generation of autists approach their own birthdays just a little easier.

{Read the full article here}

And while I’m really glad that she wrote it, it signals a number of massive gaps that I really feel we need to address — and that I, as a 52-year-old Autistic woman who grew up around many, many, other Autistic people and relatives, many of whom lived to a very advanced age (try 103… my uber-Autistic college professor grandfather lived out his days with joy and purpose). And their quality of life was not shit (sorry Grandpa, I had to swear).

Frankly, it kind of depresses me that all the news coming out about us is bad. And it also depresses me to think about how many truly useful hours we spend trying to fix shit that’s just plain wrong, instead of living our lives to our best, enjoying ourselves, finding purpose and meaning, and having the kind of superlative quality we can have.

Yeah, living Autistic in today’s world is no picnic. Seriously, it’s incredibly stressful and defeating at times. The problem, from where I’m standing, is not that things in general are not to our liking, but that we expect them to be… and when they’re not, we’re caught off-guard.

This is a problem. For everyone. But mostly for us. Yes, the world is failing us. The rest of the world is neglecting to shield us from neurotypical aggression and unrealistic non-autistic expectations. People are mean-spirited and cruel. There’s a lot of pain, and too many people are more than happy to pass their pain along to others — especially if we seem weaker or more vulnerable than they.

But guess what? That’s the deal. That’s how people are. This is not news. And just as you wouldn’t necessarily light candles and hold a vigil for someone who saw all the warning signs around a tar pit, ignored the calls of others to stay out, crawled over a fence, and proceeded to wade into the muck and sink into it to their death… I’m not altogether inclined to weep bitter tears for people who are clearly able to see what’s what in the world, but keep pushing for things to be other than what they are.

Maybe I’m old and cynical, but the world can be a brutal place. So, we need to gird ourselves. And we need to spend far less time trying to change others… while we spend a whole lot more time on setting ourselves up for success. Seriously, the world is so full of amazing wonder and joy for Autistic folks — far more than for neurotypicals. We’re wired for joy, and we should bask in that as much as humanly possible

One of the most painful experiences in life is clinging to unrealistic expectations and non adjusting accordingly. I’ve done it plenty of times, myself, and yeah — it’s excruciating.

At the same time, one of the most wonderfully liberating things, is to accept things for what they are, and just get on with living your life, always working towards changing what you can — and understanding the difference between what can and cannot be changed.

To whit: My job situation.

I mean, it just sucks. It seemed like a good idea, when I first got it, and by many accounts I have done very well in it. But Autistically speaking, it’s a total setup. It’s not at all suited to my Autistic personality. It’s overwhelming, exhausting, and it requires that I be able to read other people and interact politically, communicate regularly, navigate social situations, and be on the phone with people on the other side of the world several times a day. How horrible! I haven’t bitched and complained about it as much as I could have over the past couple of years, but I’ve been suffering intensely from it.

And yet, there’s something to be gained from this. It’s been a fantastic experience, all the pain notwithstanding. And I’ve learned a lot. The biggest lesson has been that this is not the job for me over the long-term, and I have to get the hell out. I’ve “taken my medicine”, as they say, and I’m getting a lot in return. Street cred. A killer addition to my resume. Connections. And the pity of strangers, when they hear where I work 😉

Ha!

So, yeah, I could wail and gnash my teeth about how “ableist” and “discriminatory” my employer is, by creating this kind of environment. No shit. They are. But that’s a terrible use of time, because all my marinating in that pain isn’t going to change anything, and even if it did change for the moment, it’s not going to alter over the long-term. So, I take what I can get, emphasize the positives, and keep plugging along.

And I use every . little . thing I learn along the way to create a world that works better for me. Because that actually is something I have control over. I cannot possibly expect the rest of the world (non-autistic as it is) to shape itself to my needs. The government is not my friend. Legislation comes and goes, lest we forget. My employer doesn’t want to know I’m Autistic to better help me — they want to know, to shield themselves from a lawsuit. Authority figures are not in the business of tending to my needs. Servant leadership is all very well and good, but the vast majority of people and entities are just struggling to survive, and the people with the most influence are often the ones who feel most exposed and vulnerable. (My rant about our generally childish and 2-dimensional 21st Century view of “power” will come in a later post.)

The world is chock full of opportunities to make more of myself than I am today. I’m taking those opportunities, as chock full of risk as they may be. I’ll wade into the pain. I’ll pay the steep price. Yep, being Autistic is incredibly stressful, if I only inhabit the non-autistic world and chafe under all its myriad restrictions. But when I allow myself to simply BE Autistic, I accommodate myself, I arrange my life in ways that work for me, and I take care of my own shit, things get a whole lot sweeter.

It’s a new year. 2018. Year of the Dog. Last month of the Western astrological calendar. I’m tired of the same-old-same-old from the past couple of years. Time to keep getting more real every day, prioritize myself, my joy, my life, and focus on what really works for me.

Read Sarah’s full article about how sucky it can be to be Autistic in the world here. It’s a good one 🙂

Oh, how I would love to talk about ideas…

sunrise behind clouds over the oceanSo, this trip has been interesting. I have 11 hours to go (and yes, I am counting), till I get to leave the office, get in my car, and drive to the airport. Then, I’ll have yet another bite to eat, board the plane, and fly home.

I can’t wait. I’m done here. I was supposed to have dinner with an Aspie friend, last night, but I ended up having to do a work team-building thing — going out to dinner with my coworkers, and then having ice cream afterwards. It was a good time, and I enjoyed hanging out with them. Just like I’ve enjoyed spending time with other folks, discussing work and other subjects, and everything that goes along with networking for work.

Sure, I enjoy spending time with these people, but when do I get time to decompress? All this peopling has been incredibly taxing. It’s exhausting, no matter how much I enjoy it. There’s too much to take in, too much to process, and all of it’s happening in an environment that’s inherently hostile to me and my sensibilities on a profound level. Everything around me is too too loud, too bright, too frenetic, too superficial, too political, too… everything.

And not an in-depth idea in sight, from what I can tell.

I’ve spent the last four days skimming the surface of life, and it’s about as much as I’m prepared to indulge. Everybody’s saying I should stay longer. I should spend more time. I should even move out here. They like me. I like them. We get along. There’s a fair amount of love between me and my coworkers here, and they enjoy working with me.

But it’s a one-way street, social and mentally speaking. I’m the one working overtime to fit in and adapt to their ways. I’m the one putting out the effort to blend and be a responsible individual who cultivates positive social interactions. I’m the one who’s bending over backwards (metaphorically) and putting a cramp in my back (literally) to adapt to their schedules, their food choices, their priorities, their values.

Very, very little of what goes on here and what people care about appeals to me. Living a classic American conspicuous hyper-consumer lifestyle in ways that support and further the dominant paradigm (as well as  the economy), and structuring your life around your popularity, social standing, and political connections are about as far from my main priorities, and you can get.

It’s just so vacuous… I feel like I’ve been living at an extremely high altitude for the past week, with very little oxygen, no trees, and no signs of diverse life to be found.

And nobody around me seems to notice, which worries me.

I mean, I like the people I work with. But at some point, I need to talk about more than office politics, as well as their mainstream lives. I need to discuss more than what people had for dinner the night before, or what the school schedules are. I’m out of  place, but I’m the only one who notices, because I follow other people’s leads, and I play to their strengths. It’s much easier to interact with people, when I make them the center of attention. They love it. They love to talk about their lives, their cars, their kids, their hobbies. But very, very little of it has anything to do with queer little ole me.

Which is pretty much the story of my life. Not much around me has anything to do with me or my values, my priorities, my interests. Never mind what I would have talked about, if I’d been able to go to dinner with my friend last night. We would have riffed on abstract concepts for hours. But alas… alack… All I have to show for dinner last night is a dessicated, intellectually barren experience, where I’ve worn myself out interacting with people nothing like me at all, doing things that don’t interest me… and there’s always the chance I’ve insulted someone without intending to.

Ah, well.

I get to go home today. Back to my books, back to my routine, back to my regular eating and exercise schedule. Back to my house, my partner, my queerness, my nonbinary, noncompliant ways, and the life that I’ve structured exactly the way I want it. Back to my quiet, my peace, my steady cadence. Back to my ideas. Back to a place where I can actually think, instead of being rushed and pushed and cajoled and coerced into meeting someone else’s cookie-cutter social needs, on someone else’s time, according to someone else’s idea about how things should be done.

Well, I’m sure I’ll get some insight from this trip, on down the line, but for now, I’m just really relieved to be finishing up my stay here and going home this afternoon. I’m sure I’ll be back here, sometime in the not-so-distant future, but for now, I’m looking forward to getting my life back to how I want and need it to be.

The day is starting. Let the games begin. Again. For the time being.

Just a few more days, till I can get back to my routine

pocket watch on map with sandOh, Lord, the inside of my head sounds ungrateful, right about now. A still, small voice has gradually been getting louder and louder… bitching and complaining about the lack of routine in my days, this past week and a half. And that voice is eager to get back to the familiar routine of the everyday.

I can’t remember the last time I had nearly two weeks off for the end-of-year holidays. I don’t think I ever have. So, in some respects, it’s been blissful. No structure to strangulate my creativity, no outside demands (other than Christmas shopping and the odd errand) to cramp my style. I’ve been able to get up when I wanted, go to sleep when I wanted, pretty much nap whenever I please, and so forth.

Yeah, in many respects, it’s been delightful.

To just let time drift, without having any deadlines, without having any requirements, without coming down to the wire on something… it’s been glorious. My everyday life is structured pretty much around deadlines, due-dates, timelines, and so fort. It all feels so contrived to me. I have a different relationship with time than a lot of people, but that actually makes me more productive. I get more done in a few hours than a lot of people do in a week. But still, I absolutely hate deadlines and standard-issue definitions of time.

Not having that holding me back has been wonderful.

But in other ways, it’s been pretty hard.

The combination of lack of routine, plus unusual activities produced a couple of meltdowns — one in a bookstore bathroom, the other at home. And a handful of commitments I said I’d do, haven’t “materialized”. I’m using that word to get myself off the proverbial hook, because the failing hasn’t been due to some amorphous outside influence — it’s been all me.

And my need to just withdraw and shut down for a week.

Oh, the holidays are funny things. Not ha-ha funny, but weird and absurd in ways that make me laugh, for some reason. I’d been so looking forward to having nearly 2 weeks to get some things done that I’d been putting off… but once I got into holiday mode, it was like I skipped over to a parallel universe, where precious few of my interests or activities intersected with my original plans.

pug looking sidewaysParallels by definition don’t intersect, so there I was, on my separate track, looking askance at my best-laid plans… feeling faintly guilty… but not too much.

More than anything, I just wanted to be what and where I was — a normally highly efficient individual… free at last.

Which is all very interesting to me, because few things give me more satisfaction than getting things done, creating, building, producing.

And yet, there’s that intense need to NOT do any of those things, every now and then.

It’s like there’s this dynamic back-and-forth between the DOING and not-doing, that balances out my life. And considering how much I’ve been doing for months, now, I really needed that time of not-doing, to reset.

Which makes me really look forward to getting back to my regular routine.

Yeah, as much as I enjoy floating in some amorphous cloud of whatever-ness (and I do!), there’s still a big part of me that just loves-loves-loves my productivity. My predictability. My ability to Get Things Done. I love surrounding myself with the results of my work, and I love the process of getting to those results. I love having my set sequence of steps I follow to a “t”, with so much expertise, I don’t even really need to think about the steps. I just do them. Because I do them every single day, and they’re very much a part of me. Some days, it feels like they are me.

So, in a way, getting back to my routine will be getting back to myself.

And that will be good — every bit as good as taking time away.

It’s all a balance, in the end, a continuously alternating back-and-forth between two extremes. I’m autistic. I know all about extremes. And I also know how to make the most of them.

And for today, and the next day, and the next day, I shall.


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