I probably need to get some medical help, but will it even matter? Should I even bother?

Run away! Run away!

Trigger Warning: I will seriously question the wisdom of sticking around in this world in the following post. You’ve been warned.

Oh great. Here we go. I’ve been feeling “off” for quite some time, now. Probably close to a year. My job was insanely busy, for about a year running. I was triple- and quadruple-booked in meetings, day after day after endless day, for months and months at a time, with a very rare 30-minute break every now and then.

My schedule was unreal. But that was the job. My boss’es schedule was like that. My coworkers’ schedules were like that. Everybody’s days were like that, on my team. At least we had jobs, right? And I was driving through on pure adrenaline and determination, the whole time. Just plain grit. Just buckling down and doing the job,  because we were so short-staffed and I was committed to holding up my end of things.

In all honesty, I really wasn’t holding up my end of things. I was attending a lot of meetings. Constant meetings. On the phone, mind you, not in person. That was one blessing. At the same time – and all you Autistic folks out there can relate – it was on the phone, and that was about the nearest thing to hell that I could ask for.

It’s bad enough being Autistic and having to be on the phone, but I also have auditory processing issues. I’ve never been diagnosed with any condition. All the tests come back saying my ears can hear just fine. But I’ve rarely been able to hear things clearly, the first time they’re said. Someone says one word, and I hear another. And then I have to ask for clarification. I ask them to repeat themselves. It’s like standard for me. I always have to ask people to repeat themselves. I can’t imagine how annoying it is for other people to have to say shit over and over with me, till I actually get it.

So, in addition to the non-stop work and thinking and processing and dealing with neurotypicals who care only about their own position (it’s never about the job) and being denied what I consider my basic human right to reach a flow state at least once a week (is it so much to ask?), I had to do it all on the phone.

Lovely.

And it was brutal. I was constantly pumping myself up to get going. Constantly staying on point. Constantly being on alert. And at the same time, my partner has been declining, physically and cognitively. So usually while I’ve been on the phone arguing with offshore managers about whether a job their team screwed up was due to a change in requirements or simply a lack of understanding of the basic requirements, I’ve been taking care of my partner, who is essentially bed-ridden (she can still go to the bathroom herself and feed herself, which is a major plus). And she’s often confused, frustrated, and angry. So, I’ve been juggling Hard Conversations at work with making meals and shuttling needed items to and from the upstairs from downstairs. 

Things have loosened up a bit, over the past months, since we got more help on the team, and I was able to offload a ton of meetings and tasks to another (hapless) coworker. But then we started remodeling our house, and the COVID-19 business kicked in. So, that was fun. We relocated to another place for a few months, while the house was worked on, which has been beautiful – such a lovely place to live for the time being. But managing the contractors, having a tree fall near the house (barely missed it – lucky for us), running interference with vendors who weren’t playing nice with our contractor, and making all these decisions about what needs to be put in place — and picking out stuff online and trying to get it shipped, when hardware and appliances that are supposed to show up on Monday so it can all be installed on Wednesday, suddenly won’t be delivered for another 6 weeks… well, that’s been fun.

And yeah. Running on adrenaline. While my partner calls to me from upstairs about how she needs her breakfast now, or she’s having a health crisis. Or she’s having a panic attack. Or she wants to just talk to me (why would anybody need to “just talk”? that’s puzzling). And I’m getting texted by someone about how something needs to be done, but it didn’t get done right. And oh, by the way, did you send out the check in the mail?

Pushing and pushing and just making it happen… that’s what I do. And I’ve been doing it. With surprisingly few meltdowns, I have to say.

But yeah, it wears thin.

And so have I, it seems. I’ve been feeling very lightheaded for weeks and months, now. My heart activity has been … interesting. Palpitations. Tightness. Feeling sick to my stomach and faint. Irregular heartbeat. I seldom go to sleep without my heart racing. I have to consciously slow it all down, which I can do.

And when I check my blood pressure, it’s usually low – the other day, it was 67/46. I know how to bring my BP up, so I’ve been doing my exercises to do that, but having a consistently low blood pressure (88/54 is another reading and I’m often around 95/65) gives me pause. It’s been even lower than usual. I have an enlarged heart, or so I’ve been told, so I wonder if that’s playing a role.

Okay, this is where the “female stuff” gets mentioned, so if you’re uncomfortable with it, you can scroll past the next few paragraphs. It’s not awful, but some people get squeamish, so you’ve been warned.

# Start of Female Stuff 

In addition, I’ve been having some spotting and cramping, despite being post-menopausal for nearly 10 years. The spotting only happened twice over the past month. I noticed a little bit of cramping, but I didn’t think much of it. Then I noticed the spotting. Not a lot, just a little. But still. That’s not supposed to happen. And the cramps are certainly not supposed to happen. But they’ve been there. I was thinking maybe they were constipation or related to my lower back pain, but these are definitely menstrual-like cramps. I had them intensely enough and long enough, that I know what they feel like. And that’s what menstrual cramps feel like.

Now, I started menopause about 10 years “ahead of schedule”, and they love to tell you that you run a greater risk of cancer or early death, if you are menopausal earlier than what’s usual. There’s precedent for early menopause in my family, so I never worried about it that much. But of course, now I’m flashing back on those conversations with “healthcare workers”, and it’s irritating.

Also, I’ve had a cervical polyp in the past, and I believe that caused me some cramping and spotting. It was benign. Sometimes women get these little “tags” of growth on their female plumbing, and it’s a simple thing to just reach up there and snip it out. Not painful at all, and the cramping and spotting stopped, right after I had that done.

So, this could be a polyp. No big deal. Or it could be something else. I’ve just been feeling so off, for months now… I honestly can’t tell what the hell is going on with me.

#End of Female Stuff

When I say off, I mean I’ve been feeling woozy and wiped out and feeling like I’m about to fall over, day after day. Exhaustion? Maybe. I mean, life is exhausting enough for me, without all this extra stuff, and there’s been a lot of extra stuff, lately. I know how to push through. I know how to keep going. I know how to prop myself up, so I don’t fall over. I know how to do a great impression of a highly functional individual who’s got it covered.

No need to worry about me! #IGotThis

That’s how we’re supposed to be, right? In America, you’re supposed to be positive and proactive and confident and bold. You can’t have misgivings. You have to always be ON, always be Convinced That We Will Prevail, No Matter What. It’s a sin, in this country, to have reservations, to doubt, to question, to not have faith. It’s anti-American blasphemy, and you’re sternly punished, anytime you show weakness or misgiving. So, despite having a distinct lack of all of the requisite attitudes, I’ve learned how to simulate all of that. Because it keeps people off my back, and I can just go about my business and do what needs to be done.

But feeling like shit, every waking moment of the day… well, that gets old, after a while. It’s kind of my default state, and I’m used to it. But this level of shitting-feeling has been noticeably higher over the past months. And now I have spotting and cramps on top of it.

So, what do I do?

I’m insatiable, when it comes to information, so I guess I’ll reach out and talk to someone. I’ll get on the phone with a TelaDoc later this week, when I’m away from my partner — we’re moving back to our house in a week, and I’m going back for a few days to get the house ready, before we completely move back in. Then I’ll be able to speak freely without worrying that she’s listening and I’ll then need to assauge an endless, relentless borderline-panic-attack that she can’t manage herself (story of my life). 

Based on that information, I’ll decide what to do from there.

But I have to admit I’m really torn about what I’ll do. The healthcare system and I are not on good terms. I’m a woman over 50, so I fit the profile of their standard-issue concept of a woman who’s just looking for attention. I’ve gotten that, tons of times, over very real concerns I had about health issues I was having – but nobody took very seriously, nobody explained well, and everyone just dismissed. They didn’t get it at all that I am both highly sensitive in some ways and not sensitive in others, so I have to have a professional opinion to help me make sense of what’s going on, so I don’t inadvertently die. I’ve been on the verge of pneumonia, as well as having an eardrum burst, because I couldn’t tell what was going on in my body, so there’s precedent.

In much larger ways, I’ve been so close to losing everything – and I mean everything – because of health issues that needed to be managed, that nobody took seriously. At all. I had to fight, tooth and nail, to find someone to help me, and then insurance wouldn’t cover it, but I didn’t care, so I nearly bankrupted myself getting help. Same story as a lot of people. And yet, here we are in 21st Century America… Why am I surprised? 

But I digress.

Anyway, I’m thinking through my algorithmic process for how I’ll handle things. Of course, without the correct information, I can’t make a firm decision, but I’m doing heuristic analysis at a high level, just considering my options. I have to think it all through carefully, because I’m the sole caregiver for my partner, and she is Extremely High Risk for COVID-19, so I have to add in an extra layer of caution in Everything I Do.

How will I handle getting tests done, if they’re needed? How will I get to the hospital? How will I tell my partner?

How will I deal with the results? If they’re fine, do I just stop thinking about it, and pretend it’s not an issue? If they’re not good, do I go with invasive procedures, or do I just settle into making the most of whatever time I have left?

That whole question of whether to pursue extreme measures or not is a big concern for me. I’m not sure how worth it, it would be. For others, sure! They love me and depend on me! No shit. I’m a fucking asset to the world – no joke. I’ve turned becoming indispensable into an art and a science, and there are so many people who love me. But what’s in it for me? Everyone asks way more from me than they give back. And I seem to be surrounded by people who are ninja-level Takers, but haven’t the faintest idea how to give unconditionally with an open heart. And anyway, they’re not interested.

Nobody is.

All anybody cares about is themself and their own corner of the world. There are some who think they care about others, and maybe they do on some level, but ultimately, everybody’s just trying to stay alive, while the world burns down around us and we do less than nothing to stop it.

All of our “leaders” are killing us. They just are. The companies that crank out all that trash of “packaging” that is now settling to the bottom of the ocean… the manufacturers who over-produce all kinds of shit we will never need and rarely use, just because they can, and because it will line their pockets… the community and government managers (I won’t say “leaders”) who refuse to put any regulations in place to protect us from those predatory manufacturers and marketers because it might impact the economy… the people in charge of police forces who just carry on as they always have, no surprises there… and the people telling the rest of us that the police forces can or will ever change, which I have no confidence can or will happen.

We have been well and truly betrayed by everyone who holds any form of power, and they show absolutely no sign of acting in the best interests of us or our planet. They are legitimately deficient in logic, reason, compassion, and conscience, and they have no accountability to anything or anyone. We wouldn’t be in this situation, if that weren’t the case. If any of them cared enough to actually act – if they cared more about principles and the survival of others – they’d take action. But they don’t. So they won’t. And here we are.

So, if I get bad news, why would I stick around? Why would I bother making myself even sicker, in hopes of prolonging the agony of being in the world that neurotypical and autistic assholes have created. Whatever your neurodiverse location on the grand spectrum, assholes are assholes, and their numbers are legion.

Why would I subject myself to the violation of the American healthcare system, which has rarely done me much good, anyway, and has ridiculed and dismissed me and my pain and discomfort time after time after time? Why would I fucking bother? If I have to leave, I might as well do it with my dignity intact, you know?

Plus, prolonging the agony of being around all this… I just don’t know. It’s too much. All of it. It’s relentless. It never stops. People are assholes.  Uncompassionate, self-centered, planet-killing assholes. If they really cared at all, and they had any intention of doing what’s really right for the planet, they would walk way from all the plastic-using, manufacturing-produced, poison-infused shit that props up our modern life, and live off the land, off the grid, with zero impact. Quit driving the fucking Priuses and cars in general. Quit buying shit on Amazon that’s so wasteful and exploitive of fucking everything you can think of.

But nobody wants to do that. It wouldn’t be comfortable. It would be inconvenient. And we need our retail therapy. We need our … stuff. Yeah, you can have it all. But you have to do it differently. Very, very differently. And unless you’re 100% not impacting the planet — or other people — negatively, you’re still a problem. You’re a liability and a threat. It’s pretty binary, actually. Either you’re a problem for the planet, or you’re not. I don’t know of anyone who’s NOT. Including me.

Hell, just by typing this on my ancient laptop that’s sucking electricity, I’m a problem. I now sit at a table that was made from artificial materials and wood from some hapless tree… with a lamp that’s also sucking electricity… in a house that’s built out of all kinds of shit that’s either toxic itself or was manufactured with highly toxic processes…  I’m a problem. I know that. And all my online venting is just adding to the burden I’m placing on the planet. Yay, me…

So, why stick around in this failed experiment? If I’m going to go, I might as well do it on my terms. Why deal with the medical establishment that practices medicine (and has yet to master it) and uses us all as test cases? I know, I know… they can deal with extreme cases, sometimes. And their extreme measures can sometimes be successful (I’ve seen the promotional ads with smiling survivors). But I’m feeling a bit like Planet Earth — all used up, abused, neglected, taken advantage of by uncaring and unfeeling narcissists. And since I can’t do the wildfire, earthquake or tsunami thing, all I can really do is determine my own fate. Kind of.

All that being said, I do think there are many other things I can do for myself to help my situation. Really take care of myself and what my body and mind need. Quit worrying about shit. Get more exercise. Eat right. Focus on what’s right in front of me. Mind my own business. Get on with it. And see what other options I have that don’t involve anything that doesn’t have anything to do with what I love and value in the world.

I don’t know exactly what’s going on with my health, and I can’t draw any conclusions till I get some more info – if I ever do.

In the meantime, I’ll just focus on what’s in front of me. I feel like crap, so what else is new?

When have I ever not felt like crap?

Occupying that space between…

This past week, I was on a business trip, and man, oh, man… straight people can be pretty extreme about their gender compliance. And they can be pretty demanding, when it comes to others’ compliance, as well.

I spent four days in a row with my workmates, who are all profoundly straight and gender-norm-conforming. And what a pain in that ass that was. Talk about masking. I mean, seriously… I kept things pretty much under wraps. It wasn’t worth tangling with their fragile sensibilities. Their gender rigidity was intense. And they were definitely not open to any sort of divergence.

The new woman who’s joined our group is friendly and motherly and a long-time engineer. She’s also extremely traditional in terms of male and female roles, and she was quite keen on “the girls” sticking together when we traveled. There were three women in our group of nine, and she was always keen on keeping the women and the men separate. She’s new. We wanted to make her feel welcome. So, we went along with it.

But it was strange not to hang out with the guys. It was definitely a different dynamic, this time. On other trips, I’ve been the only “woman” in the crowd, which has been kind of strange, because the guys always treated me like a woman… although I’ve rarely felt even remotely “female”. Erg. Please. This is definitely not the group to go all-out Queer with. They spook easily, and frankly, I need to work with them.

So, on goes the mask. And I “tone it all down” in the way I do.

People might think I’m capitulating, that I’m not being true to my whole self. Yeah. No kidding. Thing is, I have to make a living. And this job has been the best deal going for me, for pretty much the past 15 years. Maybe longer. So, I make my concessions. At least they’re not assholes, which is more than I can say for most of the other gender norm-compliant people I’ve had the great misfortune to work with in the past.

Well, whatever. It’s all a grand adventure. It just makes me more keenly aware of how queer I really am… and how much I value what freedom I can find to just be myself, as myself, in the privacy of my own home… even if I can’t get it anywhere else.

I don’t consider myself transgender. I’m not sure I consider myself non-binary, per se. I’m just gender non-compliant. Fluid. Just being me, independent of any gender norms.

Whatever specific label and territory people have marked out… I don’t belong anywhere within their boundaries, no matter how queer they may make those boundaries.

Maybe I’m just boundless. Yeah… I’m boundless.

Trading one type of conformity for another? Notes on not belonging anywhere.

Whatever road I choose seems to lead me nowhere.

Try as I might, I just can’t seem to fit into any type of community. I fit into all of them, to some extent. Enough to make others feel like I belong.

I mask and blend extremely well, after all. It’s one of the advantages of being Autistic — learning how to survive, even thrive, in all sorts of conditions. Being able to play my part, support others, be a productive participant whose contributions are valued.

I’m a member of the community gardens in my town. I’m also on one of the town boards. I’m a valued contributor at work, and people seek out my input. I’m loved by my family. I’m also a member of an Autism support group for folks over 50 years of age, and they miss me when I can’t attend.

All this is great. For them.

But I never seem to fit well enough to be truly comfortable myself.

This is especially true of the whole new gender / sexuality scene. There are so many “new” words for different ways to be, I can’t even keep up. And while I can relate to a lot of them, I don’t find myself neatly fitting into any one catgory. Ace. Aro. Demi. Pan. Enby. Queer. Gender Fluid. I probably fit into any or all of them, at some point during my life — or day — but nothing ever “sticks” for me very long.

And I’m sure there are plenty of other definitions and categories that I’d fit into, here and there, as well.

But nothing really fits me 100%. Even if it seems to, it rapidly changes. And then I don’t fit anywhere.

Again.

That’s one of the reasons (I think) that I haven’t been blogging that much here, lately. The whole Autism landscape feels like such a minefield, and anything anyone says can be weaponized against them — or someone else. Even honest mistakes or lack of information get lobbed back at people like they’re deliberate attempts to harm others. Maybe they are, maybe they aren’t. Or (given what I know about human nature) they’re a combination of both. There’s never an easy answer.

But that seems to be what so many people are looking for, these days.

Easy answers. Clear delineations. Black-and-white categories to define who’s in, who’s out, who belongs, who doesn’t, and so forth.

A lot of that seems to be coming from the younger generation(s), it seems. Maybe I’m wrong (it’s been known to happen), but the pattern I see is folks who are young enough to be my children doing their best to make sense of the world with new categories, definitions, re-definitions, and unique identities. And I don’t fit into any of them. I understand the desire to do that. I did it, myself, when I was in my 20s. But I just don’t have the spare energy for that, these days… especially considering what how impermanent my “final say” assertions about the world turned out to be.

Plus, I have a lot on my proverbial plate. I’ve been working insane hours. Not getting enough sleep. Keeping my garden going. Driving my partner to and from her events. And trying to keep my own projects going. There’s so much happening in my life, I just don’t have the resources to keep up with all the new ways of thinking about people.

Or of thinking about myself.

Back about 20 years ago, I lived as a man for some 4.5 years. I put my female body into male clothes, a male role, a masculine way of moving through the world. I was pretty serious about transitioning, at that time. And then I ran into the buzz-saw of Community Requirements, and the types of behavior and acceptable conduct felt even more restrictive to me than outside the circle I was hoping to join. Nasty comments on online forums. Getting sized up and dismissed.

I didn’t feel free. I felt even more restricted than I had before. And I realized that I didn’t belong there, either.

Everybody’s got their “stuff”, of course. And who knows why people interacted with me the way they did. 20 years ago, the trans community was going through a lot of changes, growing pains, just getting started. And not everybody was sweetness and light.

Rather than getting into it and stirring things up, I dropped the whole transition thing. There was really no support for me, personally, and the costs outweighed the benefits. Everybody’s different, and everybody has their reasons. There are plenty of people who see more benefit to shifting their place in life, and I’m glad they have a place to go to.

But for me, there doesn’t seem to be any one place where I’m 100% comfortable. Except with a very few friends, and also in my own company.

I guess that points to me being Autistic. Of course it does. And of course, it’s not a deficit in and of itself. If anything, it’s a strength. Because the rest of the world is pretty much  a big old mess. And even the parts that aren’t a mess can be so distressing to interact with, that it’s only logical that I (and others like me) would pull away and not want to have anything to do with it.

That goes for Autistic corners of the world, as well. Those of us who are hyposensitive can be painful for those of us who are hypersensitive. I should know. I was raised by a hyposensitive mother, whose interactions with me were the equivalent of her beating me on a daily basis. She didn’t realize it. It wasn’t her fault that she couldn’t sense where her body was in space, or she had to over-contact every single thing and person in her life to experience them. It’s not her fault, and I quit blaming her, years ago.

But that doesn’t change the fact of the effect of her behavior on me. I’m still stuck with the enduring trauma. I’m still convinced, deep down inside, that I’m a bad person who deserves to be punished, because I felt “punished” every single day of my life in her house, and I’d been taught that you only get punished if you’ve done something wrong, or if you’re a bad person. No matter how unaware she was, I’m still tasked with recovering from it, every living day of my life.

Then again, those of us who are hypersensitive can be pretty intolerable for those of us who are hyposensitive. We’re picky, we’re persnickety. We’re so demanding. We need a lot, to function, to feel at home (if we do at all), to feel safe… if even for a moment. I pitch fits. I freak out. I snap. I meltdown. I collapse. And that’s not helpful for anyone, especially me. But that’s where I’ve landed. That’s how I am. And it’s my job to figure out how to live with it in ways that don’t harm everyone around me. I harmed a lot of people around me, for many, many years. And I’m tired of it. I’ve devoted much of the past decade to learning how to not do that, anymore.

But no matter how I try, I’m not sure I’ll ever really get to a place where I really feel comfortable. Anywhere. It probably has a lot to do with me being as sensitive as I am, which makes it hard for me to fit in over the long term. I’m most comfortable by myself, and that’s okay. And at this point in my life, I’m getting used to the idea of piecing together community where I can get it — and not relying on any one group or any one category to provide a safe haven or a sense of identity for me.

In some ways, it feels dangerous. On the other hand, it feels safer. More realistic. None of the labels fit me completely. None of the identities feel like they’re a good match for all of me. I almost envy people who feel like they do fit into a category, like they do belong in a certain group.

Almost.

But not quite.

Well, it’s Monday morning. I have to get to work. I’m officially out of time, for today, for thinking about this stuff. Maybe later, when I’ve caught up on some sleep.

#Autism and its $TAKE-HO£D€Rs

Earlier this month, there was a conference on Autism research in Rotterdam, and out of that came some discussion of how to fundamentally change how we talk about Autism, as well as how we identify who’s playing what role in the discussion. There’s Autism Community (those of us on the Autism Spectrum), and there are Autism Stakeholders — researchers and clinicians who build their careers around studying us.

Cos (@autismage) on Twitter proposed

I’d call any #autism researcher or clinician a ‘stakeholder’, unless they’re #ActuallyAutistic. have an #autistic relative/partner, or do participatory work with #autistic pple. Those exceptions are ‘community’. Therapists (with same exceptions) are ‘stakeholders’. Very simple

And that got me thinking…
Of course it did.

At first, it seemed to me that anyone who’s Autistic would be a “stakeholder”, because we have a “stake” in the discussions, the research, the ongoing developments, and so forth. We’re directly impacted by them, and we stand to gain or lose, depending on how those develop.

I use the term “stakeholder” all the time at work when I talk about projects, and the meaning we have for it, is someone who is directly impacted by the outcomes of those projects. They’re invested. They’re affected. They have a lot to gain or lose from the results. Just like Autistic people who are deeply affected by all the developments in research and policy and public discourse.

We’re stakeholders, right?

Well, maybe…

Taking a closer look at the etymology of the word, it struck me that the original meaning of the word was the exact opposite of how I was hearing it used.

Folks on Wikipedia say:

Per Webster’s 3rd New International Dictionary 1: a person entrusted with the stakes of two or more persons betting against one another and charged with the duty of delivering the stakes to the winner 2: a person entrusted with the custody of property or money that is the subject of litigation or of contention between rival claimants in which the holder claims no right or property interest

So, the idea of a stakeholder has nothing (originally) to do with the actual stakes themselves. They’re basically an “escrow agent” of sorts, with no personal investment in what’s going on.

And then there’s the popular conception of stakeholder as “someone who holds a stake in the ground to claim territory”. That’s something I’ve heard a number of times in the course of meetings at work, and the spirit of it carries through, as though we were in the Wild West (per the NY Times🙂

… when Western land was made available to those who would work and live on it, a stake became a section of land marked off by stakes and claimed by the farmer. By extension, a grub stake was money advanced for food, or grub, as an investment or loan.

And here’s where it gets interesting to me, and it becomes more apparent to me that we really should differentiate between the Autism Community and Autism Stakeholders.

First, the idea that stakeholders don’t actually hold a direct interest in the Autism Community. True enough, I believe. They’re interested in us, and they make a career off us, earning a living thanks to our “puzzling” existence (sarcasm). They’re stake-holders, not invested parties with personal issues at stake.

And then there’s the second “Wild West” definition of stakeholders — which seems even more apropos to me, considering the colonialism at its core. The West was “opened” by displacing Indigenous peoples from their ancestral lands, and if you could get your hands on a stake, you could get a piece of the action. The DSM-V and other diagnostic tools pathologize and marginalize us, and they’re used to clear us out of the territory of our own lives in a very real way.  And then the “settlers” — people who have taken courses, completed degrees, and gotten certifications — have moved in to profit from our marginalization.

Just as Nestle moves into an area and commandeers all the potable water, then sells it back to the rightful inhabitants, so have the “Autism professionals” moved in on our lives, declared us “unfit”, and then devised all sorts of for-profit paths to “rehabilitate” us in the image they desire — as often as not using violence in its many forms to achieve the goal of “normalcy”.

If that’s not colonialism, I don’t know what is.

And in a very real sense, the people who are profiting from explaining our existence to the world — after they’ve completely confused everyone, to begin with — are stakeholders. In the financial sense. In the territorial sense.

So, yes, Cos — we should differentiate between the Autism Community and Autism stakeholders. That distinction is more than semantic. For some of us, it’s life and death.

How I got my #Autistic start in the working world

Back in 1987, I was stuck. I had just come back to the United States after studying in Germany for a couple years, and I had to find a job. Not just any job, either. I had to find a real job.

I had four years of college – two in the U.S. and two in Germany – but I didn’t have a degree. I also didn’t have much real-world 9-to-5 working experience. Running a paper route, tutoring students, typing manuscripts for an automotive industry translator, and doing manual labor in greenhouses, restaurants, and styrofoam cup factories, on and off, since I was 12 years old had all been great work experiences and instilled a great work ethic in me, but they hadn’t prepared me for the adult-world realities of finding — and keeping — steady 9-to-5 work.

I had to find a job, though. I was an adult, and at last I could legally get away from my parents. We’d had a difficult relationship for years, and I was sick and tired of the constant pressure to conform to their religious, heteronormative, homogenized way of life. I could never do anything right, in their eyes, even though I knew my own way of doing things was the perfect way for me. I was queer (though I was a bit fuzzy on the details at age 22). I wanted to be a writer, an artist, an explorer. I didn’t want the drab, boring, predictable life they were constantly pushing me towards. All I’d ever wanted, since I was 12, was to be independent… to get up and go to sleep whenever I chose, to write books, make art, find out what the world had to offer. I needed to carve out a place that was all my own. And since I was (finally) of majority age, I was in a position to do just that.

I was setting up house in suburban New Jersey, and the rent needed to be paid. Of course, with an unfinished double major in German and anthropology, I’d been told that I’d never find good-paying work. To do well for myself, I’d have to have an advanced degree in a specialized profession. But I was out of money for school, and I needed to get on with my life, degree or no degree. I needed a car, I needed new clothes, I needed to put food on my table and pay my bills. But after searching the newspapers for days and weeks, I wasn’t finding any work that appealed to me, and I was having no luck at all with sending out my rèsumé.

I was at my wits’ end.

Then I remembered a guy I’d known when I was in high school. He’d been a few years older than me, and he’d been living on his own for a while. He didn’t have a “regular” job, but he always provided for himself in perfectly legal ways. How? He’d signed up with a temporary employment agency, and when he felt like working, he’d pick up the phone and give his agency a call. Sometimes they’d have a couple of days of work for him. Sometimes they’d have a couple of weeks’ worth. He wasn’t the kind of guy who really liked to work (he was pretty lazy, actually, and he admitted it), but he sure did like to make money. His employment agency kept him working pretty much whenever he wanted to.

So, I thought I’d try that, too. Not knowing what to expect, I went down to a branch office of the same national temp agency he’d used, and inquired about getting work. I could type, I could file, I could do just about any office task you put in front of me.

It worked! Within days I was working and earning a regular paycheck. And the jobs just kept coming. I worked at various and sundry offices around the area — hospitals, industrial distributors, and general offices. I don’t remember many of the details about my first assignments. They were pretty boring, as I recall. And that doesn’t matter. The most important thing was what happened as a result of those assignments.

You see, my temp agency offered free computer training if I worked for them for two solid weeks. What a great opportunity! Now, remember, this was in 1987, before computers had taken over the world (how times have changed!), but I had a feeling I should get as much training and develop as many skills as possible to make myself as marketable as possible. So, I put in my hours (I can do just about anything for two weeks) and signed up to learn a popular word processing program through a self-paced tutorial at the agency’s office. As a result of my increased skills, I got assigned to progressively more challenging assignments, and each experience offered me a little more opportunity to learn than the last.

The rest, as they say, is history.

Over the course of the past 30 years of working in the 9-to-5 world, the longest I’ve ever been out of work against my will was two weeks. I’ve taken time off, like the month I took off in 1992 to move across the country, the month I took off in 1995 to move back, and the first six weeks in 2006, when I started my own publishing company. I’ve changed jobs a bunch of times (as one does in this economy), and I’ve chosen to work part-time when my health was poor or I was perpetually burned out. But I’ve never had trouble connecting with great opportunities.

This is all because I got my start doing “temp work”. As maligned as it is, temping provides a huge number of benefits and advantages, especially for folks like me who have chronic health issues, problems with Autistic Burnout, and who get just plain sick and tired of dealing with neurotypical people, day in and day out. Time and again, I’ve parlayed my experience at short-term assignments at big and little companies into long-term positions, including lucrative full-time employment. With the right combination of social observation, practical skill, and an eye for opportunity, I went from being a jobless college dropout without much of a future, to earning six figures at a multinational financial services firm. And I did it in just over ten years, as my three-month temporary assignment turned into nine years of building technology with a leading financial services firm.

Temping made it all possible. In fact, I think it’s safe to say that if I hadn’t been temping most of the time between 1987 and 1999, it might never have happened. In the coming weeks, I’ll discuss why that was, and how I did it. I’ll lay out the kinds of steps I took to “trade up” from temp jobs to a steady work in a field that’s got plenty of opportunity. And I’ll lay it all out in common-sense terms that I hope you can apply in your own life. If I managed to do this, maybe you can, too. With the right attitude, approach, and techniques, I’m convinced other people can do it, too.

Bottom line, I wouldn’t be where I am today, without temping.

Countering #suicide and #Autism with #Autistic Career Hacks

It’s so important to talk about Autism and suicide, and it’s important to talk about things that can substantially make our lives better. Things that can keep us fed and housed and connected to the rest of the world in constructive, mutually beneficial ways.

Having a job and/or finding meaningful work is a big part of what keeps me going. As much as I complain about my job, and as much as it exhausts me, it provides me with the following necessary elements of my life:

1. Structure. I know where I’m going to be, each weekday (pretty much). And I know what’s expected of me. The corporate world is very much an institutional environment, and that suits me. Behaviors are regulated. Interactions are prescribed. There are guidelines for everything. And expectations are made clear.
2. Predictability and Routine. My days and weeks have a predictable rhythm. And even if it’s exhausting and depleting, at least I know what to expect. I not only know what to expect from myself, I also know what to expect from others — when they’ll be around, what they’ll be doing, etc. That’s so important and helpful for me.
3. Social interaction. Even though I absolutely dread dealing with other people, and I avoid it whenever I can, at work, I can’t NOT interact with others. I’m forced to. But the interactions are all structured and defined by our roles at work, and I can very easily leave a conversation under a completely believable pretext: I have work to do. I can interact with other people — both Autistic and non-autistic (I work in high tech) — on a regular basis, but I can always get away. And they understand. Because they’re supposed to be working, too.
4. Community. This is more than just social interaction. It’s a sense of belonging, of knowing others and being known, and finding commonality and shared purpose. It’s about being part of something bigger than myself. Even though I would never personally choose to hang out with 98.72% of the people I work with, I’m still part of their “tribe”, and they seem to like me. I like them, too, within the work context. No, it’s more accurate to say we all actually love each other. That sounds strange, considering the work environment, but there’s a loving-kindness and comaraderie we share that I haven’t found anywhere else. Someone out there cares about me. And that helps immensely.
5. Money. Obviously this is a big deal. For me, more than many others. Being Autistic puts me in an extremely vulnerable position, with all my social and communication difficulties that can literally get me killed (either slowly or quickly) in the outside world. But “money talks”. And when I am in a financial transaction with others, giving them money, they have to be nice to me. Or they don’t get my money. Money is very much a “crutch” for me. It opens doors that would otherwise be shut tight — and crush me like a bug under a steamroller.
6. Status and Social “Lubrication”. I’ve made a point of working for Big Name Companies for years. I learned back in the late 1980s that, for some reason, people are impressed by certain “brands” and they cut everyone slack, when they are associated with them. Score! And it works. I’ve literally been in social situations that were going terribly, until I mentioned where I worked — and people were so impressed (huh? whatever…) that they started treating me like a human being. So, I’ve actively sought out a series of jobs with big, recognizable names. Like money, that paves the way through social situations that I’d otherwise not fare well in.

Those are six big things that I get from having steady work. There are more, but I have to get to work, so I’m running out of time. I’ve sacrificed a tremendous amount, over the years, to get where I am now, and it has not been easy. It’s driven me to the edge, more times than I can count. But I’ve always come back from the edge. And one year after another, for over 30 years now, I’ve made progress.

When I hear about how only 16% of Autistic people are fully employed, I have the same reaction as “the ratio of Autistic men to Autistic women is 4:1”. Bad data. Incomplete data. I’ve worked around tons of Autistic folks in the past three decades, and all of them have been more than fully employed. There are lots of tips and techniques that we all just used to find out organically — because different generations actually talked to each other, and we passed survival information from one to the other. I can’t even count the number of conversations I’ve had with folks much older than me who I now would ID as Autistic. They gave me lots of info about how to deal with the working world, they propped me up and helped me sort things out. And they let me know, I was not alone in my suffering. They were suffering, too, but they’d figured out how to deal with it.

Of course, today, it’s much more en vogue to sequester yourself in your own generational peer group, so tons of info doesn’t get passed along. Maybe that has something to do with it? Or maybe it’s about expectation. Back in my early adulthood, it was simply expected that I’d find work — whatever position I could find — and work my way up in the world, just like everyone else.

The world has changed, needless to say, but some things don’t change.

It’s just that nobody’s telling others what they need to know nearly as freely and completely as they used to.

Oh, but I’m digressing. Time to go to work. More to come.

Figuring out this work flow thing… eventually.

I need to discern patterns to live effectively. Sometimes it feels like it takes forever to figure it out.

Ha! I’ve finally figured a few things out. I’m a “late bloomer” in many ways, developing skills at a different rate than other non-autistic people — social skills, logistics skills, and just figuring things out at a different rate than other people seem to expect.

The crux of it all is that I’m a heavy-duty pattern-thinker, and it takes me a while to identify patterns — including exceptions to rules. It takes me years of observation, sometimes, before I get to a place where I’m feeling expert enough to predict what’s going to happen… where my anxiety is at a manageable level… and I can just relax and settle into my life.

I’m currently at this place, in terms of my day-to-day responsibilities. I’ve got a full roster of activities at work, and I’ve finally figured out that I don’t have to attend every single meeting on my calendar. Yeah, I know — you’d think that I’d get that, by now, but I can be extremely literal and rigid when it comes to my obligations. And frankly, my determination to keep every single commitment I make has worked in my favor many times, over the years.

But as I look at my calendar today, after 2 days off work and hundreds of emails to catch up on, I realize that some of that stuff is optional.

Plus — major development — I realize now that I don’t need to be fully engaged in every single meeting I attend. Many meetings I attend cover a variety of topics, and I don’t have anything to say about some of those topics. Or they have nothing to do with me. Or they’re informational only. So, I can actually be doing other things at those moments. Like catch up on emails. Like browse through Twitter. Like do a little web searching for subjects that fascinate me. Walk around. Get something to eat or drink. I’ve perfected my technique for calling in to conference calls with my mobile phone, while doing conferencing on my laptop.

Balance is good.

So is realizing that I don’t have to be 100% ON, 100% of the time.

That’s just exhausting, and I’m tired of being so exhausted every single waking moment.

Of course, this all takes time to work out. And sometimes I get so wiped out by the situation that I can’t continue long enough to really figure it out. I have to change jobs, because I’m in danger of failing so catastrophically that my “career” (as it were) could be derailed and I’d never be able to hold my head up in the field where I work. Those times are the worst — a horrible in-between place where I’ve gotten far enough down a path to partly understand my situation, but I’m not far enough to  really get it. And being so depleted and disoriented, that I’m incoherent in job interviews.

Ugh. So horrible.

But every now and then, like now, I get to a point where things “click” into place, and I actually have the sense that I understand my situation and I “have a feel” for it. And parts of the whole become second-nature to me.

Like right now… as I blog while half-listening to a conference call that doesn’t have 100% to do with me and my work.

Autism as an adaptive common variant pathway for human brain development – ScienceDirect

Autism as an adaptive common variant pathway for human brain development – ScienceDirect
— Read on www.sciencedirect.com/science/article/pii/S1878929316300743

My very #Autistic “career path”

I’m putting “career path” in quotes, because I can’t say that I’ve ever really had a career path. More like, looked for opportunities and followed them where I found them.

In setting myself up for success, I’ve used temping / contract positions regularly to get a foothold in certain industries. I also used it to get free training, as well as support myself during times when I could not — NOT — handle working 40 hours a week, for 50 weeks out of the year. Whenever I’ve needed to take a break from the political nightmares of full-time employment (and for this Autist, they are nightmares), I’ve just bailed out of the full-time scene and switched over to contract / temp work.

Irononically, it tends to pay better — see the spike in 2014 when I was making significantly more than in the years before and after? That’s when I was on a contract with a company just 10 minutes from my home. So, why did I leave? Because I couldn’t stand those people. They treated me like an idiot, even though I was more experienced than they. The whole environment was deeply infantilizing, and they acted like they were doing me a favor, tolerating my presence. Oh, please. More like the other way around. The money wasn’t worth it. Plus, I was approached by someone with a really great position — less money, but more influence, and the chance to really feel like my work was making a difference in the world.

This is how it’s always been with me. I haven’t deliberately set out to get certain kinds of jobs — they’ve just come to me, actually. It might sound weird, but here’s the thing:

If you set yourself up with all the right external props to cue employers about your intrinsic value, you can “engineer” your work life to sync up with good opportunities. And they will actually come to you.

In other words, if you make sure you have all the right pieces in place, the industry of your choice will make room for you. It’s not magic. It’s science. And art. And doing a handful of things in a considered, deliberate way.

Sound unlikely? That’s been my experience for 20+ years, and it keeps happening. And this, while I’ve been without a college/university degree, I’ve been chronically ill, absolutely wiped out by the demands of the neurotypical world on my Autistic self, and supporting a disabled spouse.

I haven’t had the time or energy to map out a “career path”. So, I’ve arranged to have it mapped out for me.

My system is basically a “career hack”, if you will. And it saves me considerable time and hassle — because I just don’t have the time or energy or even the confidence to come up with a career plan and expect it to work out. It just never has for me, so I’ve had to do things differently.

Oh, I’d intended to post the first part of my “insider’s guide to using temp / contract jobs to get ahead as an Autistic individual” here, but I’ve gone down a tangent…

Well, I’ll start posting that in a little bit. It needs some cleaning up, since I wrote it 12 years ago, and some things have changed, since then. Not a lot, but some.

More to come…

 

My very #Autistic earnings trajectory

Talk about an uneven developmental trajectory… Here’s my earnings history over the course of the past 32 years. Here are the jobs I’ve had:

Year	Job
1987	Office temp
1988	Direct mail coordinator
1989	Legal Secretary
1990	Legal Temp
1991	Legal Temp
1992	Tech Writer
1993	Tech Writer
1994	Temp
1995	Staff Supervisor
1996	Staff Supervisor
1997	Web developer
1998	Web developer
1999	Web developer
2000	Web developer
2001	Web dev / project mgr
2002	Web dev / team lead
2003	Web dev / team lead
2004	Web dev / team lead
2005	Web dev / team lead
2006	Web developer
2007	Web developer
2008	Web developer
2009	Web developer
2010	Web dev / project mgr
2011	Web dev / project mgr
2012	Web dev / project mgr
2013	Web dev / project mgr
2014	Project manager
2015	Project manager
2016	Program manager
2017	Program manager
2018	Program manager

And my earnings have changed significantly, over time – particularly when my health took a turn for the worse, or I picked up new skills that matched the market demand.

I’ve never had a “career path” in the sense that others do. I’ve basically just gone where the opportunity is, where the need is, where the money is… and what I know for sure I can do. People say that I’m too hesitant about taking on work I’m not 100% sure I can do, but frankly, the stress of not being 100% proficient at something actually erodes my capabilities, so it ends up being a self-fulfilling prophecy. Plus, working as a woman in STEM, there’s a lot more pressure on me, as it is, so that also factors in.

I do want to write more about this later, but given how flat-out busy my life has been, of late, I’m not sure when I’ll be able to get to it. I do feel, though, like I’m approaching another point where I need to take a lower-paying job to take some of the pressure off and give myself a chance to catch up. I’ve been saving money really aggressively, and I have over 6 months worth of living expenses saved up. So, if I do change jobs and make less, I can offset the “hit” I take. For a while, anyway.

That, and keeping expenses down…

Well, gotta run. Work awaits.