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.
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?
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.
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 shoulddifferentiate 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.
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.
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:
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.
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.
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.
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.
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.
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.
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.
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:
Direct mail coordinator
Web dev / project mgr
Web dev / team lead
Web dev / team lead
Web dev / team lead
Web dev / team lead
Web dev / project mgr
Web dev / project mgr
Web dev / project mgr
Web dev / project mgr
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.
The news isn’t good, especially for those who have seen Asperger as an under-the-radar resister to genocidal fascists, a kind of light in the general darkness, whether it was WWII or the cluelessness that’s dominated discussions about Autism, lo, these many years. His descriptions of Autistic kids have been called out as perceptive, even appreciative, and his name has been associated with Autistic folks with a certain profile of abilities and support needs. But… he was allied with the Nazis.
The paper is open access, and you can either read it online or download a PDF. I skimmed through it yesterday. The text itself is over 30 pages, and then there are 10 pages of endnotes (which is fun for some of us – you know who you are 😉 It’s no small task to wade through paragraph after paragraph of carefully woven narrative, citations, references, and so forth, which go directly against the prevailing perception of the once-favored Herr Doktor.
Asperger never joined the Nazi party, apparently. But he did plenty to appear compliant. ‘Beginning in 1938, he took to signing his diagnostic reports with “Heil
Hitler”,’ and he described some of his partly-Jewish-descended patients as “Mischlings” (“mixed Jewish blood”, which was literally damning, for those times). This is just not good:
On 27 June 1941, 2 months before her third birthday,
Asperger examined a girl at his clinic named Herta
Schreiber (Fig. 6). The youngest of nine children, Herta
showed signs of disturbed mental and physical development
ever since she had fallen ill with encephalitis a few
months before. Asperger’s diagnostic report on Herta
reads as follows:
Severe personality disorder (post-encephalitic?): most
severe motoric retardation; erethic idiocy; seizures. At
home the child must be an unbearable burden to the
mother, who has to care for five healthy children.
Permanent placement at Spiegelgrund seems
absolutely necessary.95 (Fig. 7)
Herta was admitted to Spiegelgrund on 1 July 1941. On
8 August, Jekelius reported her to the Reich Committee
for the Scientific Registration of Serious Hereditary and
Congenital Illnesses, the secret organization behind child
“euthanasia.” In the form he sent to Berlin, Jekelius
pointed out that Herta had no chance of recovery but that
her condition would not curtail her life expectancy—an
In the end, Asperger did have blood on his hands. As did everyone who actively cooperated with Nazis at that point in history.
Now, before you start thinking I’m an apologist for this sort of thing, rest assured, I’m not. I’m seriously reconsidering referring to myself as an Aspie, or talking about Aspergers Syndrome at all. I’ve never been 100% comfortable with referring to myself as having a “syndrome”, anyway. If I have a syndrome, then the rest of humanity does, too — and they’re far worse off (not to mention more dangerous and impaired) than I am, thank you very much.
Here’s the thing, though… So much of our completely justifiable outrage doesn’t account for how things were, back then. I often wonder why — why?! — any Jewish or otherwise non-Nazi doctor or professional would have wantedto stay and work in Vienna, in those days? It was their home… okay. They were settled there and had their roots there, and nobody was going to push them out. Okay. I understand that perspective. But if things are going south… or even smelling like they’re going to… why stick around?
I say this as someone who grew up in an environment that literally wanted to destroy me. As a woman, as an intelligent person, as a non-binary queer. I’ve moved a number of times in my life, and for the past 23 years, I’ve been settled in a place where I can peacefully exist without constantly looking over my shoulder or worrying about being attacked or losing my job or being pushed aside, just because I’m different.
I also lived in southern West Germany from 1985-87, in an area that had a lot of children of hardcore Nazis. Even some surviving Nazis. Around midnight in the pubs, when the televisions signed off for the day and the national anthem played, all the old-timers who were out late drinking would be mournfully silent during the song, then their stories would turn to the “old days”, for example, when they worked in concentration camps. Hmm. Something about sitting a few tables away from someone who might have had a day job at Auschwitz … well, it makes you think.
It still makes me ill, to recollect.
And what I remember so clearly from those days in rich, well-appointed, idyllic West Germany was how hush-hush everything “unpleasant’ was, and how incredibly screwed up a lot of people were. Heavy, heavy drinking. Domestic violence. Just a ton of dysfunction simmering under the surface of what was an otherwise prosperous and well-run society — the most prosperous in Europe, at the time. It was seriously messed up. If everything was that twisted under excellent economic conditions in times of peace, I can’t even begin to imagine how screwed up it was back in Asperger’s time.
Now, I wasn’t a professional in Vienna in the 1930s, so I can’t know for sure what I personally would have done at that time, but in my own life I’ve relocated over less dangerous circumstances, and I seriously doubt I would have stuck around. Maybe it’s because of the lessons from that relatively recent history that I’m so willing to relocate — I’ve learned what happens when you “stick it out” even though things are clearly developing against you. In any case, I’m pretty sure I would have booked passage and gotten the hell out of Europe, if I’d had the chance. Hell, even if I hadn’t had a chance, I would have done my best to get out of there. Of course, that wasn’t always possible, especially if you were Jewish, but Asperger wasn’t Jewish. He probably would have had far fewer barriers to leaving. He had more of a choice than most. He chose to stay.
With this in mind, my attitude has always been that Dr. Asperger did a deal with those devils. In fact, I feel like pretty much anyone who stayed behind and continued to be installed in their position in Nazi-occupied areas, had to collaborate at least a little bit, to keep practicing their profession. Think… Vichy France. And a little bit of collaboration could morph into a lot without even realizing it. It’s not hard, under those conditions, to get swept in, even if you are trying to find a balance. The vice was so tight, the control was so pervasive, and everyone and everything was so scrutinized by the Nazis’ machine, that I firmly believe there was no way anybody could have practiced professionally — especially medicine — without furthering the Nazi agenda to some extent.
There were some Schindlers in the crowd, of course, but the vast majority were not… making increasing concessions as the years wore on, to stay in the game, till the pendulum of history swung back around and they could get back to their non-Nazi-fied lives.
Does this vindicate Asperger or any of his other contemporaries who went along (er, like thousands upon thousands upon thousands of everyday people), hoping the bad dream would finally pass? Not even close. But it does put things in perspective.
And whenever we look at history, I feel we must view it in light of how things were, back then. Not how they are (or should be) now. That’s extremely hard, these days, because the world we live in (and lots of young people have grown up in) is so very, very different from how things were in 1930s Vienna. Or the 40s. Or the 50s, for that matter. Things that used to really suck have been turned into consumer commodities, with the rough edges buffed off to make them more saleable. The 1950s have morphed into the “mid-century” with stylish furniture and television shows (e.g., Mad Men) extolling that “simpler time”. But some of us still remember just how completely screwed up that time was, with women not being allowed to have their own credit cards without their husband’s approval, and homosexuality being a jailable offense. The 1960s have been cast in a counter-culture light, but for many people they were just an extension of the oppressive 1950s, with the Vietnam War taking place of the Korean Conflict. I know my own upbringing in the latter half of the 60s was every bit as oppressive, sexist, classist and exploitive as the 1950s were for others. We look back through the lens provided by a market economy that has everything to gain from us reveling in the good, while setting aside the bad.
The whole 20th century was a bit of a sh*tshow, as far as I’m concerned. And yet, it was an improvement on the 19th. Indoor plumbing. Electricity. Internet. Every generation has its disgraces that it can never get free of. And when we lose sight of that, we lose the ability to think critically and assimilate the lessons of the past.
So, no, Asperger has never had a “get out of jail free card” from me. I’ve always known he was culpable. Especially for the stuff that wasn’t documented.
Plus, beyond the times he lived in, he wasn’t the only medical / psychiatric professional whose practices were suspect. Let’s not forget how young the psychological field is. It’s been around for just over 100 years. Not a long time, really, and in many ways, it’s still in its infancy (despite what the Psy.D’s of the world would have us believe.) Especially with regard to Autism, pretty much most medical professionals have been barbaric / sadistic in their treatment of people like me… And many still are. It’s not so different from the treatment of queers when I was growing up was. If you were a homo, you could get shipped off to a psychiatric facility, given the early version (ugh) of shock treatment, be beaten, killed, lose your job and your home… you name it. And there was nothing you could say about it, because those were the norms of the day. If you were really that different, that’s what you could reasonably expect.
I’m not saying it was right. I’m saying that’s how it was. And it was even worse in prior decades and centuries. When we lose sight of that miserable fact, we stop being able to have a rational conversation about Asperger, Autism, difference, and human nature in general.
So, no, the whole “Asperger was a Nazi collaborator” trope hasn’t ruined my day / week / month / year / life. I’ve always figured his record was far more besmirched than anyone guessed. Just the fact that he was able to keep practicing medicine after the Anschluss, and throughout the reign of the Nazis, always seemed clear evidence that he was compliant in ways that killed off people like me. We just didn’t have documented proof, till recently.
To which I say, “Meh. So what else is new?” People have been trying to destroy me, my entire life. They haven’t succeeded. Yet. They will keep trying. I don’t take it personally. I see them for what they are, and I act accordingly. I live my life — in places where I can live safely. I avoid people who wish me harm, and I try not to give them my money. I don’t take their sh*t, but I know my life force is worth more than hassling with people like that. I have things to do. I have another world to create. Asperger being ID’ed as a Nazi accomplice doesn’t make his work any less useful — for the good it’s actually done. It just makes our understanding of him — and the human species — a little more complete.
As it turns out, it really doesn’t make sense for me to go back to school, at this point. I looked at the numbers for how much it’s going to cost me, and I checked around to see what other people’s experience has been like with the program I chose. Reports are mixed. Some people love it, some hate it. Being totally realistic, when I think about my time commitments, my money situation, and the general trajectory of my life, if this is gonna be expensive and time-consuming, going back to school is definitely not at the top of the list.
I tend to think about restructuring my life on a semi-regular basis, especially when I am tired and overworked. I end up charting a whole new big course for my life, forgetting about the things I already have happening. And I lose the plot of my life. I’ve been feeling like that’s been happening a lot, lately. Losing the plot, forgetting what my priorities really are, overlooking the things that I love and that mean so much to me, and just getting caught up in distractions.
So, while I like the idea of having a degree, finally, unless it is absolutely, positively critical for me, and it’s fast-tracked and not expensive, it doesn’t make sense for me to sink the time, energy, and money into that whole endeavor.
So, back to my original programming. Focus on my writing, focus on my day-to-day life, my responsibilities, my obligations, and do my best by them, instead of getting wrapped up in a change that I’m somehow convinced is going to dramatically alter the course of my life.
I really have to stay fluid with this. Everything feels like it’s shifting and changing around me, and I need to not lose the plot on my writing. I’ve become increasingly concerned with the end-game I’m caught up in right now. Getting a degree for the sake of professional advancement doesn’t necessarily make sense, if I’m going to age out of the 9-to-5 workforce in 10-20 years. My age is a factor where I work, and people my age are usually shown the door before too long. Early retirement… I’ll be eligible in less than 5 years, which seems just so bizarre to me. If that happens – and I sincerely hope it will – that means I’ll get severance pay, and that’ll be a bit of a buffer to float me. It probably won’t cover me for long, but it will be something. And that is what I am holding out for.
So, yeah… end-game. Not in terms of the end of my life, but in terms of the end of my standard-issue mainstreamed life. I own a house with a mortgage that will be paid off in less than 12 years. After that, my need to make boucoup bucks will decrease dramatically. I’m also setting myself up for greater self-sufficiency — getting a plot in a community garden, setting up my own home for greater energy efficiency, streamlining just about everything I can manage, buying big-ticket items now, while I can still afford them, and generally cutting down on my dependency on whatever I can — especially the expensive shit.
As for income, ideally, I’ll be self-supporting via my writing, in another 12 years. It may sound like a stretch, but I need to get my act together with this, do the work I need to do in order to write the best work I can and really contribute. For all my complaining about the need to promote myself, that’s just a part of the whole for anyone who wants to be self-sustaining. I just need to find the proper tools to get myself some exposure and connect with people who actually want to read my work.
Get my Patreon refined. Actually make that a thing.
And put my energy into that, rather than getting a degree which I may or may not need, in the grand scheme of things.
If I need it, and it’s easy and doesn’t wreck my life, I’ll go for that degree. But quite frankly, I’ve been dancing around getting my writing out there for quite some time. Fits and starts. Fits and starts. And it’s getting a little old.
So, time to turn my prodigious focus to the task of figuring out this writing business, figuring out how I can get some income coming in about it. There are a lot of micropayment options out there, and if I build up enough of a following, that could sustain me, most likely. It’s just a matter of connecting with people who can and will contribute — complete the circle of creation, to keep it going.
Well, we’ll see how it turns out. Always an adventure.
I’ve never been a fan of the whole TGIF thing. Seems to me, if you’re really that unhappy with your life — so unhappy, that the best day of the week is when your regular life is about to go on hold — you should really do something about your life, in general. Why stay stuck, if you can make a change? It’s not always easy, of course, but it can be done.
I still feel that way.
But today I’m really grateful it’s Friday.
‘Cause truth be told, I’m kind of stuck in the job where I am now. It has its high points and its low points, like any job, but I know it’s not where I want to be for the long term. I’m just sort of tolerating it right now.
And I’m in that state of mind that’s all about just getting through this last day and then taking a break from it all and getting back to my own sort of experiences.
Thank God It’s Friday, indeed.
Actually, I’m incredibly lucky, in some ways. I’m able to work from home when I need to. So, I’ve been working from home most of this week. I’ve only been in the office one day, that I can remember. Or maybe it was two? Can’t recall. And that’s nice. It’s when I can remember each and every moment of a week, that I know I’ve had a hard time.
But when I can’t remember… that means I’ve been in a bit of a flow state. And the sh*t that’s hit the fan hasn’t stuck to anything.
That’s a great state to be in.
And here I am.
Well, speaking of work, I should get to it. Just really glad to be here, today.
I had dreams of being able to kick back and do next to nothing today. That’s going to have to wait till tomorrow. I’ve got too much to do before the day is out, to kick back and do nothing.
Drop off a letter at the post office. It has to go out today. It should have been sent out a few days ago, but life got the better of us.
Take the recycling to the dump. I’ve been taking the trash down pretty regularly, but there are cartons and bags of recycling that still need to get out. I also need to get rid of old clothes and a bunch of books that were impulse purchases, years ago, and haven’t weathered the test of time. There are donation bins at the dump. I spaced out last week and forgot to drop off the bags of stuff in the back seat of my car. So, this week, I’m making a specific point of it.
Return books to the library. I don’t know why I keep getting books out. I have plenty at home. But I can’t resist, somehow. There’s so much to read, so much to explore.
Pick up my car from the garage. It’s been an extra week that the worked on it, and it’s high time we got it back.
Food shop. Because we need to eat, and when I go to the mechanic, I’ll be near the grocery store that has good fish for sale. We need to eat more fish, so I’ll pick up some, along with some frozen mango. I make a really great piece of cod with honey mustard sauce and mango. It’s really tasty! My mouth is watering.
Get my hair cut. I meant to do that last weekend, but I couldn’t get there in time. I’m looking pretty shaggy, these days. Gotta fix that.
Clean up around the house more. Do laundry. Reduce the piles of papers, break down the boxes. Sweep out the garage. Move the pieces of the artificial Christmas tree into the basement, to make room in the garage for the car when it comes home from the mechanic. Just get things in order.
Collect my tax return supplies, so I know where to find them. I have a folder I started back in January, when all the forms started to come in. So, I’m ahead of the game there. Now I need to get my computer files in order — download bank statements from 2017 so I can calculate the profit/loss of a couple of businesses I’ve had going.
Take a nap. This is non-negotiable. I need at least an hour this afternoon. Preferably two. I’ve been getting a lot of exercise, lately, and my body needs to recover. From that, and the rest of life.
It might sound like a lot, but this is a standard Saturday for me. And once I get going, everything just flows. Because I’ve been practicing this for years and years, and I’ve built up skill in all these areas. Believe me, it hasn’t come easy, and I’ve made a lot of mistakes along the way, worn myself out, messed up, fallen to pieces, and put myself back together again. But now I can pretty much put myself on autopilot and just motor through everything. So, all the hard work has been for good. It’s paid off. Hasn’t been easy or pleasant at times, but it’s paid off.
So, I’ll drink my coffee and change my clothes and head out to the dump, where I can bid adieu to the paper, cardboard, plastic, and glass that’s been sitting in bags and boxes in my garage for weeks. Adieu! Adieu! Then on to the next thing.
Most of all, I can’t wait for that nap! A reward for work well-done.
Ever since I was a kid, I knew I didn’t want to live like my parents lived. I didn’t like their friends, I didn’t like their values, I didn’t like how they behaved, I didn’t like their life choices. Everything — from food to clothing to how we worked (we did a lot of that) to what we did in our free time — was at odds with what I wanted for myself.
I didn’t want to eat their greasy, fatty, carb-filled meals at 7:15, Noon, and 5:30, that left me feeling worn out… and tied my gut up in anguished knots of pain every single day. I wanted to eat a leisurely continental breakfast, followed by a mid-morning snack (second breakfast!), a light lunch, a mind-afternoon munch, and then a solid dinner, preferably late in the evening (Spanish style).
I didn’t want to “rough it” camping in campgrounds with bathhouses that reeked of disinfectant and bug spray… going on long hikes with loud gangs of people, in the process getting all sweaty and covered in bug bites and various scratch organic matter… sleeping on the ground in a tent that didn’t keep out the noise or the mosquitoes. I wanted to spend my days on a university campus, preferably in the library, reading… studying… writing… and taking solitary walks through the silent woods or along an isolated beach.
I wanted to be free. Free of their small-minded limits. Free of their food choices. Free of their priorities. Free of their roughness. Free of their fear.
And my ticket to freedom was work. Getting jobs that would pay me enough that I could do what I wanted, when I wanted, how I wanted, as much (or as little) as I wanted. Getting out in the world and finding out how other people lived their lives. Coming up with my own ways of doing things, based on what I learned from others.
I left home at 18, going off to college in a state that bordered Canada, which had heavy Canadian influence. Most of the television, radio, and news were Canadian. This was in the early 1980, before there was cable and internet and DVDs and whatnot. The world was much bigger then, and it was easier to get away.
So, I got away. I took off and got the hell out of there. I was going to school out-of-state, and because I’d gone directly against my parents’ wishes, my parents cut me off financially. They wanted me to go to the Christian college they’d both graduated from, because then I could get a scholarship – a kind of family discount – but there was no way I was doing that. You had to sign a “morality agreement” saying you wouldn’t do certain things. But everything I actually wanted to do in college was on that agreement — drinking, smoking, dancing, loud rock music (a-la big-hair 80s guitar bands — rock on!) So, yeah, ix-nay on that college choice.
Because I went out-of-state (I couldn’t get away fast enough), I paid higher tuition. Now, mind you, that means I paid $8,500 a semester, versus $25,000 — times have changed — but when you have limited funds, and your family has cut you off, that’s a lot of money for an 18-year-old to come up with.
But I did it. I shopped my typing skills around, making extra money re-typing bought papers for my peers, who didn’t feel like writing them, themselves. I tutored a local kid in German. I did work-study programs during the school year and over the summer. I worked it out so I could stay in-state for the summer between freshman and sophomore year to get my state residency and get lower tuition the following three years. It worked.
Unfortunately, I got myself in a bit of trouble over that summer. And the following year was pretty rough, with me dealing with police and the law and a stalker. But again, the thing that saved me was finding work. I went to Germany for a “semester abroad” and liked it so much, I got a job with an American translator and was able to pay my way to stay a full 2 years.
I did get extra help from friends, who paid for more dinners than I could count. I generally paid for my breakfast and lunch — which cost next to nothing for students, in those days. I could get a full lunch meal for less than $2.00, so long as I wasn’t picky about what went into the “Eintopf” — a stewed mix of whatever was leftover from the day before. I had to eat. I didn’t have the luxury of picking and choosing. And the dinners I made for myself were vegetarian, because meat was expensive, and I could get all the nutrients I needed from veggies and rice.
When I reached the end of my 4 years of college, I was out of money and out of options. I didn’t have a degree, yet, because I had lost touch with my home university and didn’t pay close attention to the requirements. I didn’t care about academic requirements! I was an artist! A writer. I was going to write novels and poetry. What good would a math class do me?
Back in the 1980s, you could still get by without a college degree, so I went back to the United States and proceeded to figure stuff out. My life was a lot more complicated and messy than I can describe here, but the one thing that kept me going through it all was work. Having a job. Having a regular income. No matter how screwed up I was, or how messed up my choices were, or how much life seem stacked against me (in terms of crippling chronic pain and coming out as a lesbian in the days when even saying the word “lesbian” out loud could get you beaten up, fired, or cast out of your circle of once-cozy friends)… as long as I had a job, I had choices. I had freedom. I could move. I could grow. I could make art. I could write.
As long as I had a job and kept working with a steady income, I was good.
And I knew that as well as anyone. I’d worked since I was 12 and had a paper route. I’d worked tons of sh*tty jobs in back kitchens of restaurants, at nurseries transplanting hundreds of tomato seedlings (I got paid per piece), delivering meals and meds at a nursing home, and I’d supported myself a number of ways through various illicit activities (selling speed out of my locker and procuring booze for classmates in high school , for example, as well as retyping contraband papers in college). No matter how crappy the job was, every single one taught me something. And I learned as I went.
Work was my ticket to independence, to creating my own safe Autistic haven from the non-autistic world. The money I made allowed me to make choices with how I was going to live, where I was going to live, what I was going to do with my free time, and if I had free time at all.
So, I was super-motivated to always have a job. No matter what, I always had a job. Working full-time, whenever possible. More, if possible. And I’ve typically worked extra gigs on the side, even while working full-time. This has been going on for 30 years, and I’ve never, ever been under-employed. If anything, I’ve been over-employed, with barely any time left to just catch my breath. But that’s my choice. That’s by design. And it’s worked for me.
I mean, look at me — virtually, of course, since you can’t actually see into my life, right now. I live in a 2100 square foot garrison colonial house in one of the most affluent towns in my county, with woods surrounding me and an amazing view of the western mountains from the front of the house. I’ve got to cars in my garage (well, one’s in the shop right now, but it will be back this coming week). I sit on a town board and participate regularly in my town’s government. I used to volunteer at a local botanical garden (till my life got too busy). I have a 6 month financial safety net in the bank, and this month I get two bonuses from work that will allow me to renovate two of the bathrooms in this house.
I’m presently sitting on a nice burgundy colored sofa with a cushy, soft grey pillow behind my back, with my favorite Samurai-design mug of coffee on the t.v. table to my right. Beside it is a ripe banana that looks really tasty, and beneath it is a woven place mat with a folded paper napkin beside it. To my left is my mobile phone, which is playing my favorite tunes, a full box of tissues, a pile of comfy, cozy blankets I can wrap around me if I get cold. Across the room is the fireplace which is built from cobblestones retrieved from a historic district in Boston. You can see chips in the stone where horse-shoes probably struck them.
I’m surrounded by comfort — the two Amish-made rocking chairs in front of the fireplace with an engraved copper coffee table my aunt brought back from Africa between then. Lovely rugs on the floor, a basket filled with Christmas cards from friends and family, an entertainment center with t.v., DVD player, VCR, and cable box… and many, many knicknacks my partner and I have collected over the years. To my right is a bookshelf full of books and papers, and the desk and main computer & printer we use for all-purpose activities. And across the room, the bay window looks out on a woodlot where firs and hardwoods sway in the wind, as hawks circle and call to each other overhead. Upstairs, my partner of 27 years is fast asleep. Later, she’ll get up, and we’ll touch up her graying roots with a “touchup kit”. I’ll do a bit of work for my day job. And I’ll take care of some other stuff for another business we have together.
I’m not listing all my blessings to make anyone jealous. For every nice thing I have, there’s been a lot of pain I’ve endured. But I am listing all these great things to make a point.
Keeping working with a steady income made all this possible. If I hadn’t been able to keep working, very little of this would be possible.
By no means am I vastly wealthy. Far from it. But because I’ve had steady work — a steady income — all this is now possible. It’s been a long and winding road, and to date (over the past 30 years), I’ve had something like 20 employers. Some of them (temporary employment agencies) were simultaneous. That was by design, because I couldn’t afford to be out of work. At all. If I had to sign up with three different agencies and play them off against each other, that’s what I did. And worked for me. Looking around at my life now, I can see just how well it worked.
Personally, I think people are really messed up about work, these days. Everybody seems to think you need to find a career and stick with that, from Day One. Er, not exactly. I’ve had four distinct “careers” in the last 30 years, and they all just happened organically. I learned different things at each job, and then I applied what I’d learned to the next one… and the next one… and the next one.
To say that my parents were horrified by my… meandering “career path” would be an understatement. I can’t even count the times they openly despaired of my future — usually in front of other people, so they could vindicate themselves and avoid public shaming.
But you know what? It worked for me. And although my future is far from guaranteed, I am a heck of a lot happier than most people I know, I have a life that really, truly works for little ol’ Autistic me, and I have the things I value most in life — Books, books, and more books… and the leisure time to read them, write, and truly enjoy myself.
Because I kept working. When one job didn’t work out (and there have been lots of them), I moved on. I cut my losses, learned my lessons, learned to portray it to others in a light that made me look like an opportunity-seeking winner, not a loser fleeing my last failure in a long string of screw-ups. I learned how to work the system and find exactly what worked for me. I didn’t hang around longer than I had to, if things got sour. And I never shed a tear about moving on. As a matter of fact, I’ve been actively interviewing for other jobs, so I can keep my hand in the game. I actually turned down a really great offer at the end of last year (because I could), and I have another interview on Monday, which I’ll probably ace, but plan to turn down, because their schedule requirements already look like they suck, compared to what I’m doing now.
Most people I know would get a little green around the gills, if they followed my path. It’s not for everyone. The point is, it works for me. And it’s paid off in some very big ways.
It boils down to the following set of non-negotiable rules I have for myself:
Always work. Never don’thave a job. Keep the income coming in. If possible, get more income coming in. If your day job doesn’t fulfill you, pursue your passion on the side and let that fill in the blanks of your spirit.
Never, ever talk disparagingly about past work experiences, but emphasize the positives. Always look for the benefits and things that other people value, and emphasize them.
And whatever you do, always, always, always work. I don’t care if it’s a crappy temp job shuffling papers for personal injury attorney — I did that for a while, and it was horrible, every single day, but I still showed up and did my best. Even if it’s a seasonal gig selling Christmas trees or lemonade on the corner… even if it’s delivering newpapers or putting flyers on people’s windshields at the mall… always, always, always work. Even if it doesn’t suit you. Even if it’s exhausting. Even if it’s demeaning. Doing shitty work is required, if there’s no other work to be found.
That’s been my secret. Tolerating awfulness and learning from it. Turning it into something better, on down the line. Not getting stuck in lost causes or beating myself up because things didn’t work out. I experience, I learn, I transform, I move on. And I move up. Because I can. And lots of other people can, too.
These days, it seems like everybody has such high expectations from the workplace. Careers. Professions. And so forth. You get out of college, and it’s all supposed to be set up for you (Pro Tip: it’s not, by the way). On the other hand, some of us have to work our way up in the world. And I’ve observed tha those of us who do, who have all those rough experiences we learn from, are worlds ahead of the rest of the entitled set-up crowd, when it comes to long-term prospects… not to mention general happiness and satisfaction with our work and life situation.
When you’ve slogged through the muck, you appreciate and value the clean, well-lighted places like they’re your ever-renewing lease on life life.
Because they are.
So, that’s my riff on working while Autistic. There’s plenty more to say, but I’ve gotta go get some things done in my own clean, well-lighted sanctuary.
Hi I'm Mike. I am 27 and I was diagnosed with "high functioning" autism as an adult at age 25. I live for music, nature, and technology. I'm still trying to figure out what it means to be autistic. This is my story.