When it all comes together… eventually

person climbing up hill through snow carrying a snowboard

Well, that only took 15 years…

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

And finally it’s all coming together.

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

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

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

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

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

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

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

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

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

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

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

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

In search of my flow state

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

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

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

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

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

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

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

So… no. Not that.

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

It’s a little depressing, actually.

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

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

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

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

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

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

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

And seriously, this is no way to live.

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

{pause to take a breath}

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

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

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

Hm.

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

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

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

So, there is hope.

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

What a delightful week it’s been! Blissfully quiet

And I’m pretty wiped out. I’ve had most of the past week to just do the things I like to do, in the way I like to do them. Which means, a lot of sitting. And a lot of isolating. And a lot of reading and writing and researching and pulling out textbooks, thumbing through them and crying, “Ah-ha!” when I find the passage(s) I’m looking for.

I’ve been immersed in a certain mode of thought I don’t have the luxury for, in my regular everyday working life — where my co-workers are suburban parents who just want to make enough money to put their kids through school and/or climb high enough on the corporate ladder where they can vex more people than those who vex them.

It’s been so much fun, being away from that whole scene, that major drain of a scene. And while I do look forward to getting back to my routine, I don’t look forward to dealing with those people again. It’s been a real pleasure, not having to constantly come to terms with the mixture of sadness, pity, compassion, frustration, and intermittent admiration, that I cycle through each day.

But I have to say, I am pretty tired.

It takes a lot out of me, trying to catch up with myself and the kind of life I want to lead, when I have such limited opportunity. It kind of works against me. Except, it’s my choice, and I can do what I please. And in the end, I’ve got a lot of satisfaction out of the whole deal.

Tomorrow I head back into the jungle.

Wish me luck.

When non-verbal == strength, it’s time to be non-verbal

red and blue dots connected by meandering lines on a field of red and blue static
My process looks confusing to others, but I get where I’m going – in my own way

So, my Major Deadline has passed. It went off pretty much without a hitch.

Just in time for Thanksgiving. I’ve got some time off, next week, but I’ll probably check in on my project to see how it’s going, now that it’s “live”.

It’s been pretty brutal, overall. Really, really taxing. And it’s taken just about a year to get this “15-week” (Hahahahahaha!) project ready for prime-time.

Now it’s out there, and it’s time to step back, think through all the lessons of the past year, and figure out the next steps. Because this sh*t isn’t going to stop. I’ve got another phase of this project just around the corner in less than 2 months’ time. So, get a little rest, and get back into it.

One of the BIG lessons of this has been seeing just how non-verbal I am, when I am in problem-solving mode. Make no mistake, I’ve been mostly in problem-solving mode for the past year. So, I’ve been mostly visual-spatial. Which means I haven’t been thinking well in words — or the times when I’ve had to think in words (and talk), I’ve been at a disadvantage. And the talking has cut into my non-verbal problem-solving.

I’ve known I’m a visual / non-verbal thinker (this blog nothwithstanding) for many years. And I’ve known for just as long that having to switch my mode between words and pictures is a problem and makes both sides more difficult. But not until this past year (or two) have I really seen so clearly just how much of a problem this can be.

In my job, I have to communicate to people.

But communicating just doesn’t happen, when I’m in non-verbal mode. So, I don’t do my full job. And it works against me and the people I work with.

Huh. If I had more energy, I’d dig into this more, but the bottom line is, I need to figure out how to meet the requirements of verbalizing, even while I’m in heavy-duty non-verbal mode. Because the job requires it. And it’s not that I don’t like to do it, or that I can’t do it. It’s just that I need to find a better balance between doing it… and not.

Well, that’s a line of thought for another day. After I’ve caught up with myself and have the time and space to really think it through.

I’ve had a lot of important (for me) insights, over the past weeks, just haven’t had time to note them all down and expand on them. I’ll get to it. Just not yet.

Watch this space, though.

Watch this space.

Haven’t got time for the pain

crane surrounded by cement construction blocks
I can pick from any experience I want to have. I’ve got things to do. I choose to experience strength and capability and accomplishment.

I’m in a fair amount of general discomfort this morning. If I move just right/wrong, I’m in pain. Autumn cleanup time is here, and I’ve also had a very busy bunch of weeks, which has put me off my schedule and pushed me more. So, yeah. Pain.

In other ways, I’m feeling a bit of pain, as well. Emotionally, psychologically, socially, my life is pretty painful. And it’s gotten to me, over the past weeks. Autumn is often a hard season for me, because so many things are dying. Also, people die. And things change. And the holidays are coming up, which means even more pain.

What to do?

There’s no way I can deny the pain that exists. But I’ve decided that that isn’t going to be my main point of focus. As a matter of fact, I’ve developed a formidable ability to hyperfocus on things of my choosing — and that hyperfocus blocks everything else out.

Including the pain.

So, that’s my choice. That’s my chosen direction. To hyperfocus on things that interest me, things that fascinate me, things that really give me joy and motivation, rather than getting stuck in the pain.

The pain will always be there. I’m not discounting it, not devaluing it. I just can’t let it wreck my life, when I have a perfectly good capability at hand, which allows me to keep functional, despite the pain.

A friend of mine insists that people need to accept and come to terms with their pain, in order to be healthy and happy. I have to understand and make peace with the ways I’m disabled, to fully honor my humanity. I agree. And I have come to terms with my pain. I know my intermittent, invisible disability all too well. I’ve been on close working terms with it all, my entire life. I’m just not a one-dimensional person who only experiences pain and disability, and makes that the center of their life.

I do not want pain to define me.

I do not want disability to define me.

I do not want to center my life around a narrative of less-than status and capabilities.

I’m just not going there.

Because I don’t need to.

I’ll never tell another person how they should relate to their pain and disability. That’s their business. That’s their path.

For me, I can’t do it.  I need to be fully involved in the world I live in, and that means putting the emphasis on my strengths rather than my weakness. That means strengthening the places where I’m strong, not dwelling on the places where I’m weak. I know about the weak places. They remind me, every single day.

But I can’t live in a world where they’re the only thing that matters.

I feel like crap today. My balance is off. My stomach is churning. I’m lightheaded, and I feel like I’m going to fall over, if I stop moving.

So, I keep moving. Ironically, the more I’m in motion, the better my vestibular sense is. Thus, I’m keeping in motion. Till I’m not. Then I sit and hang onto something, so I don’t fall over and get hurt. Then I gather myself and get back into it.

That’s what works for me. Nobody is obligated to agree with me or try to match me or tell me my approach is good or bad. Everybody finds their own way.

For now — and the foreseeable future — my choice is to recognize what’s wrong, but leave that in the background.

What it means to be #autistic and permeable

water pouring on a permeable surface and tricking through the porous material
Everybody else’s “stuff” is always soaking through.

The majority of people I hear talking about autism (from outside our community) seem to believe that autism is about being insensitive, non-empathetic, having no sense of others or the world around us, and being unable to relate. We’re “impermeable” to them — solid blocks of concrete that can’t let anything in.

We’re logical, because we don’t “get” the whole emotional thing. We make decisions with our heads, because our hearts are shriveled up, stunted, and like the Grinch, three sizes too small. We don’t have capacity for the “soft” sides of life, according to some — including leading researchers (who shall go unnamed, so I don’t give them any more visibility).

In a recent post, I proposed that our logic actually stems from the fact that, as autistic people, we are so sensitive — to physical sensations, as well as emotions and empathetic experiences — that we have to learn how to manage the flood of all that sensations that are constantly intruding on our experience… or else.

I know I’m not the only autistic individual who finds life a repeated assault on my senses, with my vision and hearing and sense of touch elevated… even while I tend to have very little sensation of balance and where my body is relation to the world around me, and other senses — like taste and smell and the feeling of striking something so hard I bruise — are subject to extreme variation.

On top of it all — what joy! (not) — the emotional floodgates unleash torrents of sensed experience that drag me from ecstatic highs to the deepest, darkest pits of extreme lows, sometimes in a matter of minutes. That’s how I know not to pay too-too close attention to my mood swings, and not to get too down by my depressive episodes. They pass. I know all too well, how quickly (and inexplicably) they pass. That knowledge has kept me alive, through all the times I wanted to end it all. I’m still here, because I hang onto that transience… and I hold out with curiosity.

That spiky autistic profile is not just about skills and abilities. It’s also about experience. Sensation. Permeability.

Yes, permeability. Being open to the world in unseen ways, being affected by it, impacted by it, shaped by it, in ways that no one else can see. That invisibility is partly because I’m stoic throughout. I’ve had to learn to be stoic, because a little girl who acts out, is a little girl who gets punished. Pushed and pulled — which is the equivalent of being beaten, when you have tactile sensitivities. Corporal punishment, doled out at the hands of people who probably had no idea how much they were really hurting me.

The whole world has no idea how much it’s hurting me — and so many others like us.

Second reason is because apparently non-autistic people can’t actually relate to anything that doesn’t have to do with their own personal experience. How strange, that they label us as the empathy-impaired sorts. Untrue. Untrue in the extreme. It’s the other way ’round. I feel everything. I sense everything. I participate in the cesspool of human emotions and experiences, without ever wanting to. I’m permeable. It all gets through. I only wish I were as non-empathic as I’m purported to be.

I have to protect myself. That much is so, so clear, after the past few weeks. It’s been a trying time, and I’m tired. I’m worn out. Depleted. Not only from the constant activity and the increase in social interactions (including a shit-ton of conference calls, reminding me yet again how much I hate talking on the phone). It’s been incredibly painful. But what to do? It can’t be helped. If I want to keep my job, I have to take hit after hit, and keep coming back for more. I have to put on my stoic face, remind myself it’s not forever, and step up… to get slammed. Knocked around. Exhausted, wiped out, drained… and then told I need to give more. Do more. Be more. Be like everyone. Be like normal people. Be a team player. Step up. Step up and take the hit. Everyone else is doing it, so get in line and take your daily medicine of pain. Just like everyone else.

Except I’m not just like everyone else.

I have to protect myself.

Protect myself from their inefficiencies that are making everything So . Much . Worse.

Guard myself against their bad behavior,  their oversights, and especially against their emotional outbursts.

Deflect their emotional neediness, their grasping, cloying need for reassurance (especially with this fucking election going on).

Shield myself from their pettiness, their infighting which makes everything that much worse and prolongs the process of resolution.

Heaven help me, I need to be on constant guard. I’m tired. I’m over-extended. I’m a lot more permeable than usual.

And it’s not just the bad stuff I need to guard against. It’s also the “good” stuff. There are certain people around me who are drawn to me… they have that hungry look in their eye, longing for connection… and they don’t know how to do it without bringing sex into it. It’s a danger. They want to engage in that way. They’re looking to connect. And they want to do it in ways that damages their marriages – and could compromise mine. It happens with men. It happens with women. It happens with just about anyone I know who feels vulnerable and worn out, and looks to me to ease their pain… to fill up a part of them that gets so depleted by the ways they choose to live their lives.

I have to be careful, because the shared sense of connection can fell like I’m sharing it too, when I’m not. It’s easy for me to overlook that phenomenon. And a deep sense of shared connection (which I have by default) can escalate into something more than it ever should be. It’s happened before. I’ve gotten in trouble before. And now I know better. I also know that it’s the kind of thing that I need to guard against, because I’m aware. I’m a hell of a lot more aware than the non-autistic folks who are just oozing a need to connect… emanating their hunger for intimacy that they think can be satisfied by a romantic interlude.

That cannot happen. And as uncomfortable as it is for me, when I realize it, the best thing is to — yes — realize it. And nip it. Nip it in the bud. Keep things professional. Keep things distant. Boundaries, mate. Boundaries. Friendly, but not overly familiar. Keep it clean. Keep it clear. Because I can. And they can’t.

The onus for managing the dynamics between others and myself typically falls on me. The adult in the room is responsible for the behavior of the children, and neurotypical folks strike me — quite often — as children. Immature, prone to peer pressure, and sexually inexperienced — not so much with activity – though that’s often the case – but with their sexuality, in general. They don’t have a lot of inner monitoring or management skills, and so they’re more than a little impaired. To keep myself safe, and also keep things from turning into something that’s oh-so wrong, I have to “ride herd” on the dynamics… steer them in the directions I’m most comfortable with.

It sounds unfairly burdensome to me. It probably does to you, too. But what’s the alternative? To seize each “teachable moment” and evolve the neurotypicals around me, to better acquaint them with what’s really going on inside them, train them to notice when they’re being “emotionally incontinent”, and shepherd them along the path to self-enlightenment? Not gonna happen. Also, consider that when I’m in the thick of it, I’m over-taxed. And that means my processing time is slowed. And I stop being able to verbalize. I stopped verbalizing the other day, when I melted down over a particularly challenging series of events. Seizing teachable moments only works if you’re not prone to selective mutism.

So, I take things as they come. And I remind myself repeatedly that “It’s not me. It’s them,” when I’m feeling rushes of emotion and reaction that do not seem consistent with my own perspective. It happens. I’m permeable. I have to remember that, so I don’t lose myself in the sea of other people’s runny emotional muck. Because shutting myself down is not an option. If I do that, I lose my most reliable connection to the world around me — my orientation, my advantage.

If you want the highs, you have to manage that lows. If you’re going to be permeable (and we don’t always have a choice), you have to recognize the dangers, the risks, and learn to work with them.

So they don’t work against you.

My disadvantage is … different

trees down on a road after a storm
I may be temporarily blocked, but I can still climb over obstacles and go on my way

Austin Shinn has another nice post about The Problem of Privilege. And I wanted to chime in, as well.

I’ve been thinking about this a lot – especially lately, in light of my complexifying relationship to autism. Do I call myself “disabled”? Do I accept it as a condition that limits me? Why am I so reluctant to just adjust to that, and integrate that as part of my experience and identity? I’m deeply ambivalent.

I think part of it has to do with how I’m not permanently disabled by autism. My Aspie life is more akin to running a marathon on a bad day, and a 10K minimum on a good day. It makes things more challenging for me. It saps my energy. And many times I feel like I’m wobbling around after a mile-long sprint up a very steep hill. But it passes. I do have enduring executive function issues. But I know how to fix them. I’m working on them — as well as the rest of my life.

I guess I feel like calling myself “disabled” does a disservice to folks who truly are struggling with many, many aspects of their lives on a regular basis. I know I’m not supposed to compare myself to others, but when I do, I come out looking not at all disabled. I mean, seriously, if I just take good care of myself and get enough sleep and eat right and keep exercising, use my supports, and learn as I go, I can have a great life. I in fact do have a great life.

That’s not to say that I don’t have issues which are temporarily disabling. I have huge problems with communication, at times, and meltdowns (while rare, nowadays) are a force I need to reckon with. I don’t get jokes. I have trouble figuring out when to talk on the phone. I hate the phone, period. And some days, the best I can do is just muddle through… or go back to bed and rest till I’m functional again. I am at increased risk of exploitation, because I can be so trusting and naive and mis-read social cues. I’m sure I have over-paid for just about everything I’ve ever bought, because the thought of negotiating never occurs to me in the moment. I’ve really had a terrible time, in the past, and I’ve had to work through a whopping case of PTSD as a result of the “excitement” and “adventures” of my youth.

Autism for me can be disabling at times. It has brought me up short many, many times. But am I disabled? I wouldn’t say that — in fairness to people who truly are.

I’m one of the few people I know who actually understates their difficulties. Most people I know have an “enhanced” view of their own struggles — even the folks who appear to have the most advantage, the most skills, the most money, of the population.  And it makes me wonder about the nature of our difficulties, and how we see ourselves as advantaged, disadvantaged, privileged, oppressed. I can’t speak for anyone who’s not in my demographic … so that limits how much I can responsibly say. But I’ll say what I can, because I think it’s important to consider — especially when we talk about privilege, disability, and the assumptions we make about How The World Is.

There’s all kinds of talk going on about white privilege these days, which is refreshing to me. On the other hand, I know a lot of white folks who absolutely bristle at the idea that they are any more privileged than others. The very suggestion really offends them. Even though it seems quite obvious to me, they take deep (and sometimes incensed) exception to the very idea that they have an advantage in life.

After all, they have difficulties. Their lives are not a cakewalk. They really struggle with certain things, and I don’t doubt they experience a great deal of pain as a result. I think what obscures our vision, sometimes, is that our difficulties may make it seem as though we’re not favored or advantaged (privileged) in the ways we most long for. We wish we could get special dispensation from the world, but things are tough all around, and we don’t see any evidence of that being the case.

So, we can think of ourselves as struggling in significant ways without a safety net, when in fact we do have a lot of privilege to fall back on. In my case, I’m a queer woman who’s been intermittently disabled over the years, working hard to make ends meet without a college degree to back me up. I’ve been broke, I’ve been well-off. Now I’m just barely above the “broke”line again. So, that’s not always easy. It makes me vulnerable. But my vulnerability is very, very different from others’.

Case in point: I was technically homeless in the winter of 1990. I walked out of a bad relationship with a duffel bag of clothes and the friendship of one person I could rely on. I was walking around the snowy streets of a major city (in a fairly drug-infested neighborhood), looking for a doorway to sleep in, in case my one contact couldn’t help me. I got lucky. They were home, so I didn’t have to spend the night in a doorway. I was officially homeless for a few weeks, while I looked for my own place. Had that one friend kicked me out, I would have been looking for another doorway.

The thing is, my homelessness was very, very different from that of a Black woman whom I and some friends helped to a shelter, where she was going with her three young daughters. She was apparently leaving a bad situation at home, as well — and it seemed to me that she’d hung in there as long as she could, for the sake of her kids. No, she did not want to talk about it. At all. It seemed clear that she had to go to a shelter, because of her situation. She couldn’t just take her little girls with her out onto the street. God only knows what became of her family. I, on the other hand, was able to pick up and leave a bad situation, just a month or two later, with a sense of elation and hope, not dread and desperation.

My situation was a passing inconvenience, and I knew that because I was a young white, middle-class woman who nobody guessed was gay, I could expect special consideration from others — especially from white men middle-class men who may have seen me as a potential partner. Not that I was taking advantage of that, but I was always so very aware that my homelessness and my difficulties were temporary hardships, at best, which others (white others) would jump at helping me solve. I got my divorce for free, because I worked at a law firm. I got a few pieces of furniture for very cheap, because someone at work told me about a going-out-of-business sale that was happening elsewhere in the office building. I could fall back on an informal network of white folks who looked out for each other (especially attractive young white women), and get the support I needed. I used that network to find a room for rent in a nice house in a safe (white) neighborhood. And I could walk around late at night without too much concern, because young white women especially were protected in that area by men and elderly women who kept a watchful eye.

This is why I am reluctant to call myself disabled or disadvantaged — because beneath the surface, there are forces which look out for “their own” and mitigate the impact. And those forces tend to favor people who look like me. That’s something that precious, precious few white folks are aware of. It’s not that we all have it easy and cushy and whatnot — there is just a whole lot more that we can take for granted… and often never suspect that others can’t.

I can also take for granted that, even if I’m wearing very thin and am having trouble balancing, tolerating light and sound and touch, can’t make myself clear (or can’t even talk at the moment), and I can’t understand what anyone is saying to me… if I just take care of myself, rest up, and use my tools, I can restore my functionality to acceptable levels. I am not permanently knocked out of the perpetual competition that can be life. I just usually feel like I’ve just run a 10K; I’m wobbly, sore, weary, and I don’t have a ton of energy to spare on fruitless pursuits.

My disadvantage is far more of a difference, than it is for many, many people. And while my situation may be intermittently disabling, the last thing I want to do, is compromise their position because I’m showing up calling myself “disabled“, when I can clearly take so much for granted, than they ever could.

#Autism – Not a puzzle, but a key

Four keys with an "A" for the part that unlocks a lock
Knowledge and understanding about Autism is the key which can unlock trapped lives. And of course, there are many different variations. It’s never boring.

I continue to be amazed by how much superstition and confusion and really, really bad information there is about Autism and Aspergers.

I don’t do much Googling of autism, because there is just so much one-sided information that has a whole lot of money behind it. And I don’t go on Facebook hardly at all, because there are so many neurotypical people who are affected by it, who all seem to be in a state of perpetual high-alert… and yet I don’t see a lot of effort made to understand autistic spectrum conditions at the very core. Maybe it’s happening, but I don’t see it.

And I don’t have the energy to seek it out. That’s what Twitter’s for, I guess.

But I’ve had to stay off Twitter more, lately, as I just get too drawn into it, and I lose track of everything else that I need to be doing. It’s a vicious cycle. Plus, Twitter on my tablet has somehow slowed to a desperate crawl and it’s hard to use. So, I un-installed it, and now I can listen to music without the constant interruptions from other apps connecting in the background.

I did a lot of stuff, this past weekend. Pretty much off my schedule. And it kind of blew up in my face with a couple of meltdowns on Saturday morning and Sunday evening. I’ve been melting down more frequently, in the past several months, and I need to do something about that. I know what things lead up to meltdowns, and I need to actively manage them, for my — and my partner’s — sake. She’s back to being afraid of me again. It’s been years, since she was really afraid of me, but apparently, my behavior has been intimidating enough for her to feel like she has to constantly walk on eggshells around me and “manage” me.

This is not a good feeling.

At all.

So, what to do? Well, first off, I need to realize just how much this summer is kicking my ass. It’s HOT a lot, which means my clothing is uncomfortable — any clothing is uncomfortable. Tempts me to join a nudist colony. Also, I’m not sleeping all that well. I crank up the air conditioner, but it doesn’t always work. I sometimes lie in bed for an hour, trying to get comfortable, before I can “get down”.

Aside from the heat, there’s the light — and activity. Bright sunlight flashing at me from every reflective surface, especially when driving, really sets me off, as I’ve become painfully aware, lately. Running errands on Saturday morning, it was a freaking gauntlet, dealing with sunlight glinting off every chrome bumper or shiny glass windshield / window. I really noticed it more than usual. All the motion, all the movement… traffic, people on bicycles and motorcycles and walking along the road, birds flying around and singing/calling and rabbits running across the road… You’d think they didn’t have anything better to do, than just be and do what they wanted to be and do.

And of course, I ended up frazzled and frayed, and then I talked to my disabled sister about old family stuff that she’s dealing with. She’s got a ton of health issues and she’s waiting to hear back from the judge about her Disability claim, which is stressful for everyone, because she’s on the verge of losing her home, if she can’t get some financial relief. I helped her out a little bit — enough to keep her afloat. That was the least stressful aspect of our connection. Doing a retrospective on how our parents did such a terrible job of taking care of us, beyond keeping a roof over our heads and food on the table… well, that was pretty grueling. And I’m still feeling the burn on that one.

The main thing that made my childhood and youth and early adulthood so demanding, was the total, utter lack of information about autism — as well as the comprehensive dearth of understanding that most of us were / are on the spectrum. I look around at people today who have access to autism information, who have diagnoses, who have resources at their disposal — if not social services, then at the very least social media support and an internet chock full of information from ActuallyAutistic people about what it’s like to be on the spectrum… what helps, what hurts… etc.

And I’m confused. Because growing up on the spectrum sucked supremely at times, because there was no awareness. And I wonder what kind of a difference it would have made, had we known then (40 years ago) what we know now. My mother could have understood that her intensely impacted sister was not just trying to be difficult throughout their childhood — she needed help and support and understanding. My mother might have gotten a clue about her own sensitivities and needs for support and more actively managed her situation. She might have realized that I was in a different “quadrant” of the spectrum, in terms of sensitivities, and not been as rough with me all the time.

I might have been more cognizant of my balance issues, my vestibular instability, and not taken as many chances with climbing and jumping and doing all that stuff that got me injured. I might have had a way to understand why I was melting down the way I was, and found ways to not humiliate myself on a regular basis. And school… what might that have been like, had people realized that my talents were starkly “uneven” for a reason other than laziness? My fearful siblings might hate me less, than they do today. And my one sister I talked to the other night might have gotten more consideration from my autistic parents, if they’d realized that they had difficulties coming to terms with intense emotion and could factor that disability into their interactions with her — with all of us.

Just a little information can go a long way. We didn’t have any, back then.  None. Zip. Zilch. Nada.

And I look around me, now, at people who have worlds’ more access to info and insight than we ever hoped to have, back then, and I wonder — What The F*ck is up with that?

It’s never easy, of course, and I’m in no position to blame or judge. But seriously, there’s something amiss, when so, so many ActuallyAutistic people are talking in detail about their lives, offering insights and information, and there are organizations and researchers who are pursuing productive lines of investigation (outside the whole vaccination controversy) about how autistic lives can be understood and supported… and yet, we’re still “lighting it up blue” and praying for a “cure”.

It’s just kind of embarrassing, to tell the truth. The U.K. (and much of northern Europe) seems decades ahead of what’s going on in the U.S.  Okay, so France has a bad habit of committing autistic people to mental institutions, and since I don’t live in Europe anymore, it’s no good to rant about it. But it seems like the U.S. is stuck in the dark ages, still. And people in a position to change that, don’t seem to realize it — or realize that it needs to change.

But it does. I’m so sick and tired of reading accounts from people who have been misunderstood, poorly served, marginalized, and disenfranchised from their own lives, simply because their brains work differently than others. I’m sick and tired of hearing people wail and moan about the awfulness of autism, when they’re actually making the problems worse by not paying any attention to what their kids are clearly telling them. I’m sick and tired of people stressing us out constantly with the nauseating perpetual motion machine of hype and hyperactivity, the non-stop adrenaline push, the incessant noise and light and activity… the verbal bias that rules the mainstream world… and then wondering why, oh why, we melt down.

We know so much more than we used to. Why is that knowledge not modifying any mainstream, neurotypical behavior? In some places it is, with some grocery stores offering quiet hours in the U.K. But in the vast majority of places, nobody seems to really care at all that they’re creating toxic, needlessly taxing environments for people who are more sensitive than they are.

It’s just so irritating. And it’s needless. Especially for people who live with autistic folks, who flatly refuse to adapt their behavior or their environment to the ones who may need anywhere from just a smidge of accommodation to full-on re-configuration of the environment to feel human and function at their best.

I’m in a terrible mood. This summer is interminable. There are at least five more weeks left of it. August is my least favorite month of all. Even less so than March, which truly sucks in this part of the world.

Enough. I’ve ranted enough. Time to find solace in my routine.

Today I am here – very focused on my special interests… isolating

as-spot-check-results-7-5-16
I really don’t feel like going to work today. I spent the last three days in blissful solitude, only going out into the company of others once — on Friday night for fireworks. It went pretty well. For the first time, I took my earplugs, and the experience was a LOT better than ever before. But my partner also got to chatting with some people who were nearby, and that always puts me on edge. Because I’m expected to interact.

Please. Go away.

It’s not fair to my partner, of course, because after a few hours with silent, predictable me, she needs to interact with social people. She’s friendly. She likes to connect. She likes to promote her activities and bring people into her social circle. Quelle horror, is all I have to say about that.

Looking at the graphic above, I can see that my sensory issues have NOT been acting up as much as usual. That’s a blessing. And I think it really has to do with how active I’ve been in pursuing my special interests — coding up my Asperger’s Autism Spot Check Tool. It’s been a really fun weekend. I’ve been having a grand time, refreshing my memory about the web development work I used to do all day, every day, for about 15 years. I’ve missed it. And it’s whetted my appetite for more. 

In terms of Sensory aspects, I have been having a little bit of trouble with tactile defensiveness — touch feels painful to me, especially water on my skin — but actually less than usual. I noticed that this morning, as I was making my breakfast. The biggest sensory impacts have been with noise sensitivity, sensing where my body is in space, my balance, and my sense of time. I’m tired — I haven’t been sleeping that well, thanks to being off my schedule. But I’ll be able to remedy that in the coming days and weeks, now that things are back to normal.
as-spot-check-entries-7-5-16-sensory-social

In terms of Social aspects, I have really just wanted to cocoon myself away… keep people at bay, so I don’t have to bother with figuring out their “stuff”. I really just want to finish up my system — upload the new help files, refine the text, take care of the details that need addressing… and also do some blogging about this tool and how it’s helping me.

The main thing is really that it’s giving me a high-level visual of how I’m doing, what aspects of my royal Aspieness are factors in my daily life, and pointing me towards areas where I can make some adjustments to even things out a bit.

Behavior-wise, I’ve been doing pretty well. (Oh, I see that the placement of the quadrants is backwards in the input form – I need to switch that, so it matches the graphic – that will be in the next release.) I love – love – love my routine, and I’m very dependent on it. So, yes, vacations and time away from my regular schedule can be a problem (and make me more inclined to isolate and pull back from the rest of the world).
as-spot-check-entries-7-5-16-behavior-thinking-emotion

Ironically, I haven’t really been stimming that much, lately. Or have I? I think maybe typing is a form of stimming. And I did go on a “jag” the other day of running in circles around the house, racing in a big circle through the living room and kitchen and dining room a bunch of times, so that was a form of stimming. But this morning not so much, so it gets a low score today.

I’m strongly list-dependent (which is a love-hate thing for me), in no small part because I’m highly impulsive and impatient and distractable. I’m also feeling highly visual — not really wanting to talk much (see Non-Verbal above). Of course, when my wife appears from her bedroom, first thing in the morning, I have to kick into “NT-gear” and be all chatty and conversational, because that’s how we roll. But it takes effort on my part. It doesn’t come naturally. I just do it because it’s what the situation requires — and it’s a whole lot more pleasant than pissing her off with being taciturn and grumbly, first thing in the morning when she wakes up.

It’s all a part of meeting people half-way. And the best part is, she goes back to bed feeling good, and I get to return to my work without a lot of angst and wondering what I did wrong this time.

The best part about my AS “Spot Check” self-assessment this morning, is that “Meltdown” is nowhere to be seen. It’s not exactly non-existent, but it’s so way-way low, that it’s not taking up a lot of energy from concern. And that’s a very good way to start the day.

Oh… My hands are tired. And it’s time to go to work. So, that’s it for now.

It’s a spectrum, after all.

Square of many colors, stripes, angles, pointing in different directionsToday is a good day, right from the get-go.

I don’t have to go into the office.

That means I don’t have to deal with constant interruptions of sound coming from people clunking leftover binders on the shelves of the cabinet outside my cube.

That means I don’t have to deal with people coming up behind me to interrupt me “for just one minute” that turns into 15 minutes of blather which completely throws me off my train of thought and trashes the past 30 minutes of concentration.

That means I don’t have to deal with:

  • the high-pitched whine of a malfunctioning thermostat beside the coffee maker
  • the intermittent mechanical groan of an automatic paper towel dispenser that seems to be possessed and keeps spitting out more paper towels on its own
  • the spray of room deodorizer that shoots out of the overhead dispenser at unpredictable intervals in the ladies room, either showering me in offensive, inescapable scent, or forcing me to hide out in the stall until the scent has dissipated enough to (almost) avoid
  • the gaggle of empty-headed nitwits clad in clothing two sizes too small for them (or anyone over the age of 14, really) who report to the guy in the office next to my cube, whose primary goal in life seems to be purely to breed — their interactions are stereotypically “look at sexy, sexy me!” and they roam around in a perpetual cluster of giggled clouded by a haze of flirty, hormonally propelled jokes that are even more annoying than the pounding of their footsteps on the floor (I’m not a fan, in case you hadn’t noticed)
  • the sound of the people next to me who are on conference calls pretty much all day
  • co-workers on the other side of the planet who take advantage of their distance to say and do things they know I can’t just reach out and choke them over

I can actually work in peace and quiet today. And the thing that gets me about the work situation, is that I can’t reasonably ask for accommodations to get people to shut up, leave me alone, or even get Facilities to fix that damn’ thermostat, because my issues aren’t reliable enough to be predictable. And it’s not every day that I am as sensitive and irritable as I am today.

My poor partner. She has to live with my perpetual ups and downs, without knowing for sure how I’ll be at any given moment. Sometimes, I don’t even know how I’m going to be, from one day to the next, one hour to the next. It’s not easy for me, either. It’s one of the things that makes me nuts about being on the spectrum — so much is unpredictable and iffy. I can’t always determine the trajectory of my state of mind/body/spirit/emotions. So, I’m kind of playing catch-up a lot.

Stimming to take the edge off. Dealing with balance issues. Sensory issues. Frustrations. Stresses. All of which serve to heighten some traits — and lessen others. Augh! It’s so confounding — especially with my pattern-seeking mind. I can’t always detect patterns behind what I’m experiencing. And that’s even more stressful and disorienting.

That’s something I hope to remedy with my AS traits chart I’ve been working on. I’m hoping it will help me get a better grip on my issues. Understand them better. Have a more visual approach to handling them. Since I’m so visual, to begin with.

And yes, I am ready for a long weekend. I’m so looking forward to doing as little as possible, as often as possible.

I need a break.