Thank heavens. In 48 minutes, it begins again – my regular #autistic routine

shovel standing in a turned-over garden
This is part of my new garden. It’s 8′ x 10′, and it took me 90 minutes to turn over with a shovel. Yeah, I’m a bad-ass 😉

I had such great plans for this past long weekend. But, of course, things turned out very differently than my designs. No surprises there. And yet, I am perpetually surprised when things don’t live up to my engineered ideals.

You’d think I’d learn.

But nah.

I had been hoping / planning / intending to spend my time intentionally. I was in serious need of some relaxing and recuperating after the prior week. I wanted to catch up on my reading, do some gardening, relax, nap, eat interesting food which I’d prepare at a leisurely pace, and have a generally restorative time. Maybe make hamburgers on Memorial Day. Watch a movie on Sunday afternoon. Call my parents.

Instead, I had a busy Saturday morning, got all “socialled-out” by interactions at the community garden, including some faux pas along with some connections. I met some of my co-gardeners in the space we share. We all have at least one 8-foot x 10-foot plot. Some of us have two plots. We’re a diverse group – an elderly Chinese man who only speaks Mandarin, an elderly white hippie-ish couple, a Black woman whose mother helps her out, an Asian-Caucasian bi-racial couple with two girls, and the older white guy who runs the place.

The elderly Chinese man communicates with us by dictating to Google Translate and showing us the text translations. At first, he was showing me Chinese-Russian translations, and I couldn’t explain that I couldn’t read them. Then I got my phone in the action, and after I explained to him that he wasn’t translating to English, he changed his settings, and all was right with the world. I also showed it to the other gardeners, who thought they needed an app to do it. But no – Google will translate text, and you can dictate the text for it to translate, so we were all fully enabled and empowered within a few hours’ time..

The day was bright. I had a lot to do. I was tired from the week. Everybody wanted to talk. Ugh. I mean, yeah – they’re lovely people, and there are worse groups to be around – but after a few hours, I started to wear thin. Especially as people continued to engage with me and discuss their plans. I found myself getting snarky and bitchier than I normally am. Fatigue. Bright sunlight. F*cking mosquitos. Anxiety over my beans, which are being chewed on by something, not to mention the constant threat of rabbits. Fencing. I need additional fencing around my plot, because the overall fence isn’t holding up. Hm. It keeps the deer out, but not the rabbits.

We’ll have to do something about that.

I’d really rather not have to deal with people, when I’m gardening, but I asked for it. I joined a community garden, so that’s what I get. Community. Good lord, what was I thinking, spending 4 hours on a viciously bright Saturday morning, when I was still hungover from all the adrenaline rushes from the week before?

I know what I was doing: trying to Live My Best Life, that’s what.

Well, I gave it my best shot, and I’m sure not everyone will remember me as the snarky, bitchy new kid who gets prickly over the garden politics of who gets what plot (just give the old Chinese man the plot next to him – nobody’s using it, anyway! – why can’t everyone just handle things logically, instead of jockeying for position?)

After my time there, chatting about this and that, I ended up feeling pretty deflated. Everybody wanted to discuss their domestic situation… as if it matters to the seedlings in your garden, whether you have kids or living parents or nieces and nephews, or you love your job. I hate those kinds of discussions. They feel intrusive. And no, I don’t want to announce to the gardening community that I’m a big ole dyke with a disabled spouse who works too-long hours in the employ of the Masters of the Universe. What difference does it make to the health of my peppers and tomatoes? Will that information make my carrot seeds actually sprout? Nope. So, why dwell on it.

I like my conversations topical. I hate schmoozing and connecting over personal details.

Hate it, I tell you.

After I extracted myself from that awkwardness (which I’m sure seemed perfectly lovely to everyone else), I rallied and got my Saturday errands done in pretty decent order. Ran to the post office and mailed out the package my partner left on the counter. Took the trash to the dump. Went food shopping. Did some cleanup around the house. Had some lunch. Took a shower. Got a nap.

The nap helped a little, but more than anything, it reminded me how exhausted I was. What was I thinking, doing all that activity first thing on a long weekend? It wasn’t like I had an overabundance of energy, to begin with. But my Saturdays are often like that. I’m coming off an exhausting week (typically), and I have just a day to get all my most unpleasant errands done… which I do. And then I crash on Saturday afternoon (if I’m lucky). I can usually rally, but last week was pretty grueling.

Well, anyway, my plans for a lot of reading and relaxing didn’t exactly materialize. Sunday and Monday were rainy, which was fine. That’s normally a relief for me. But I was thrown off by the long weekend, for some reason. My pacing was off. And I was really tired and irritable with my partner, resulting in too much friction, too much arguing, a little yelling, a bunch of tears. I really hate when that happens, especially when it’s pretty much centered around my meltdowns. It’s like my meltdowns are whirlpools in the rapids of my life, and as I sail downstream, paddling wildly, I keep getting sucked into them… pulled down into the roiling darkness, as I’m flailing madly, trying to keep upright, trying to keep from tipping over or getting pulled into the Darkness.

The worst thing is, it often feels like my partner is sitting in the back of the boat, commanding me to keep the craft righted (not bothering to pick up a paddle, mind you). But that’s another blog post for another day – still working my way through understanding how to better handle that type of situation.

Anyway, my weekend ended up much more active than it should have been. I lost sleep, didn’t catch up on it. And the things I’d been planning on doing… well, most of them fell by the wayside. I did read a lot, though. I’m working my way through Katherine May’s The Electricity of Every Living Thing, and it’s a real pleasure – I’m nearing the end, and that saddens me. 😦

I got some writing done. I got some sleeping done. I got my exercise. But rest and recuperation? Nope. I’ll have to see if I can work that into my upcoming week — my typically structured week with the usual routine, which is so important for my regular maintenance and mental health. Three days off was a plus. But I’m glad it doesn’t happen all that often.

P.S. On a bright note, we did manage to get one of our rooms partly cleaned out and tidied up. We’ve been getting increasingly boxed in (literally) by all this stuff that we haven’t managed to either throw away or put away. Executive dysfunction, combined with exhaustion and bare-minimum interest, isn’t the most domestically beneficial state to live in. But yesterday, we actually did something about that. Bonus.

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Six reasons I frequently end up in bad relationships

people arguing with a splattering of dark around the borderI just read a great post about Gut Instincts and Autistics getting bullied or taken advantage of by people. This post is an expansion on what I commented there.

I’ve been in bad relationships (either intimate ones or friendships or working relationships) that really took a toll on my standing in life. At times, they were emotionally abusive and set me back that way, but more often, they reflected poorly on me in the eyes of others, and that undermined my reputation with other people. They took me for a fool and dismissed me in untold ways.

That can be an even bigger problem than self-esteem or self-perception issues. You can always fake your way through crappy self-esteem. But if you’re not esteemed by others, then the problems are even worse.

Anyway, I’ve thought a lot about this over the course of the past years of coming to terms with being Autistic. And I’ve realized there are some really compelling reasons I find myself in (or actively seek out) bad / abusive / challenging relationships. Some other reasons I’ve done that over the years are:

  1. Alexithymia – I can’t tell how I feel about a situation. I literally can’t tell how I feel about a person and how they’re treating me. If I don’t know they’re being mean to me, how can I address it? How can I learn to recognize their behavior as abusive or negative? How can I ever hope to defend myself? Fortunately, being clueless about the harm actually protects me from it. For example, if someone insults me in a language I don’t know, I’m not going to be hurt. At all. I don’t know they were being nasty, so … meh.
  2. Slow processing speed – I’m often too busy parsing the environmental cues to realize someone’s yelling at me all the time. This is a real thing with me. People, I literally don’t have the bandwidth to manage all the sensory input — the lights overhead, the feel of a breeze on my arm, the scratchy seams in my shirt, the background noise of people talking or moving stuff around or making the floor vibrate when they walk by — to “get” that people are making fun of me or getting short with me. I’m usually just barely keeping up, so by the time it sinks in that someone’s being mean to me, the conversation / situation has moved on. La la.

  3. Auditory processing issues – I often can’t tell right away that someone is being mean to me, because I can’t actually hear everything they’re saying to me. Again, it’s like someone swearing at me and calling me terrible names in another language, when every other word drops out of their sentence. I sorta-kinda get that they’re upset, but I can’t tell what they’re going on about. So, I generally ignore that sort of thing. It’s like when a friend of mine (who’s deaf in one ear) decides she’s had enough of people and she lies down on the side of her “good ear” (as she calls it). She effectively blocks out the rest of the world, and she can rest.

  4. Memory issues – This is a huge factor. I don’t have great short-term working memory (I’ve been tested, and it sucks), so a lot of stuff just gets forgotten… sometimes before it can even register. My slow processing speed makes things register later, while my auditory processing issues only allows some stuff to get through. And then, either the situation evolves to something completely different, or I forget the details of what was said or done, and life goes on as it has been. On good days, I’m blissfully unaware that people are acting terribly towards me. On bad days, I’m like, “What just happened?” When my memory is particularly bad (when I’m tired or agitated or overwhelmed by everything else), I’m lucky if I can remember that something actually did happen. It’s not nearly as awful as it sounds. Believe me, much of what happens in my relating with other people isn’t worth remembering.

  5. Being yelled at and treated badly wakes me up – I often feel sluggish and brain-foggy, and that makes me feel terrible about myself. But when someone is being mean to me, it makes me more alert. Even if the circumstances are hurtful, at least I feel like I’m awake and I feel like “myself”. So, it doesn’t seem so awful. It actually feels engaging. Of course, the standard-issue position on being yelled at is, It’s Terrible And Should Never Happen – If It’s Happening, Make It Stop. But in my case, being yelled at doesn’t always actually hurt me. Sometimes it wakes me up in important ways.

  6. Logic, logic, logic – I tend to click into logical mode, in challenging situations, so I don’t really feel emotionally impacted, every single time. Sometimes I am, but not always. Sometimes it’s just an objective thing that happens, and I don’t get emotional about it. Of course, other times I do. It’s variable. But when I am really hurt by something that’s said to me, logic comes to the rescue again. Objectively speaking, I’m a wonderful person with so much to offer. I’ve been told that often enough by people I trust, that I’m inclined to believe it. My sample size is big enough to be statistically viable. So there. If someone is being mean to me, I can be objectively certain that it’s about them, not about me. And I can move on without taking it personally.

On the whole, I think the mental health / relationship standards that apply to the general population don’t necessarily apply to me. Stuff that impacts others, doesn’t impact me the same way. Sure, it would be great to not be abused by the people I consider friends, but people are people, and frankly, I often can’t tell if people are actually being mean to me, or not. If I can’t detect it, it doesn’t affect me, so it’s far less of a tragedy for me than it is for others who are deeply impacted.

Maybe I’m sounding all denial-y, but that’s how I see it. That’s my experience. I’m still here, I have a really positive self-image, I’m able to care for and protect myself, and I’m living a far better life (for myself) than I ever dreamed possible. I’ve somewhat figured out — from experience — how to spot “problem people” and avoid them. But mostly, I avoid people when I can, because it’s so exhausting to have to figure everyone out, always on the lookout for danger signs, and constantly weighing all the variables and considerations. Sheesh, who has the time and energy for that? Certainly, not I.

So, I spend a lot of time alone.  And that is wonderful and delightful. The most interaction I have on a regular basis is social media. At least I can walk away from that (literally) anytime I’m feeling overwhelmed, and it’s not going to jeopardize my life, like walking out of my job or home would.

In the end, we all have to figure out what works for us and what doesn’t, and take steps to make the most of what works, while trying our best to keep what doesn’t work from ruining our lives. It’s an art. It’s a science. Life goes on.

#Autism and its $TAKE-HO£D€Rs

man carrying briefcase and fistful of money
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
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

three people sitting at table looking at blueprintsBack 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

woman walking down a long road 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.

Short-Form, Long-Shot – When the usual path to literary greatness is… cut off

Minoan bull leaping - three humans jumping over a charging bullI’m dictating this as I drive in my car, on my way to buy supper that I have to cook at 7:03 PM.

I stayed in bed too long after my afternoon nap between 4:15 and 6 o’clock, because frankly lying in bed under heavy warm covers, reading through Twitter, finding what’s there, discovering which voices are saying what about their lives, is about the most pleasurable thing in my life, these days.

Don’t get me wrong, there are plenty – and I say plenty – of enjoyable experiences in my day. My life is never without them. But lying in bed, idling away, my mind afire with ideas from people who think on purpose, in a warm, weighted space is about the closest thing to bliss I can imagine, these days.

And reading the words of others, I think about my own voice. I think about my people. I think about all the Autistics I know and have known, and I think about what we bring to the world. Everybody knows what we bring, but very few people know that we’re the ones who bring it. And they certainly don’t know how we do it or why we do it. There’s no point in trying to explain. They think they have this Autism business all figured out. Some assholes with influence and power have decided it for society at large, and who are any of us to question that?

And I think about this writing. “Blogging” they call it. Makes it sound so simple. Makes it sounds so trite. An exercising in ego. Just a few words barfed out on the screen, in the hope that anybody’s listening… regardless of whether anybody cares.   Ego-casting. Vanity. That’s how it’s often been seen, and sometimes we earn that reputation.

But still… it seems unfair.

The blogging medium has been mine for almost as long as it’s existed. I knew, right away, how powerful it could be. I’ve turned friends on to the practice, and some of them have become extremely successful at it, gaining followers and fans, professional connections and book contracts and staff positions as writers with publishers like Conde Nast. Pretty sweet. It’s way more than I’ve ever been able to accomplish, but I like to think my input made a difference.

Most of the time, that’s about the best I can ask for, anyway.

As for me, I just don’t have the energy to do much more than I already do. I don’t have a working partner to support me as I pursue my dreams. I don’t have a life that lets me spend hours and hours on refining my craft. And I certainly don’t have hours and hours to spend reading the words of others, as much as I’d like to. People put down the short-form reading and writing that abounds these days, but it seems to me that some of us can’t afford anything other than short-form.

We don’t have the time, we don’t have the money that makes that sort of leisure possible. You know — the stuff the people used to just take for granted – cozying up with a long book on grey, rainy day, sinking into it for hours at a time, becoming one with the material, being one with the story, feeling as though the author has crept into your cells and reconfigured them from the inside out. Who has the luxury of that, these days?

If you’re not chronically ill and trying to hold down a full-time job while you support your disabled, dependent spouse and keep your house in order, yeah, I suppose you would. If you don’t end up exhausting yourself jumping the horns of the 9-to-5 bulls in the Minoan circus ring of modern day society, yeah I suppose you might. If you don’t completely destroy any semblance of functionality in the course of just getting by on neurotypical terms, day in and day out, yeah I can see how that would be possible.

But me? Nope. That’s not the world I live in. And that’s not what’s possible.

So, I blog. I read blogs. I follow links on Twitter and I see what’s there, preferably something that’s a little bit longer than a 20 minute read, but not too much longer, because I have stuff to do. And I have to get it done, because nobody else is going to do it for me. I really don’t feel like dying.

It’s really easy to die when you’re Autistic. It’s really easy to just lose it. I lose it regularly. I usually can get it back, but it comes at a cost. It takes hours, days, weeks, sometimes months to get it back.  Yeah, I can totally right myself again. But not like other people think I can. And that like I wish I could.

It’s taken me, what — 35 years? — to figure it out. I’ll say 35 because it sounds nice and it digits out to eight, which is the signifier of eternity for me, which is what pretty much everything feels like to be, half the time. Eternity. Infinity. Endless possibilities, with no end in sight… fortunately… unfortunately.

And as I pull into the supermarket parking lot, I’m happy. Because it only took me 13 minutes to get here, there was no traffic, the light rain is keeping people off the roads but not making my life that much more difficult to navigate, and I know exactly when I’m getting when I walk in the grocery store. I wish to God I had the time and the energy to write more.

But I don’t.

So I won’t.

#Autism and #suicide – what keeps me alive

bookshelf packed with books

I’ve been thinking a lot about how I’ve lived my life, thus far. My birthday is coming up in less than a month, so my thoughts turn to retrospectives on the past year, as well as my life. I’ve only been around for ~53 years (compared to the 100+ years my elder relatives usually live to), so relatively speaking, I feel like I’m just getting started.

I know, I know, Autistic people are supposed to die something like 16 years before their neurotypical peers, and I’m sure many do. But all the Autistic folks I’ve been related to and have known, have all lived extraordinarily long lives, and they’ve been active and engaged in the world until the last few years.

So, I’m planning on being around for at least another 53 years — probably longer, since I’m in better shape than most of my peers, and I live my life intentionally, with future strength and stability in mind.

Anyway, I’ve been thinking a lot about the choices I’ve made in life, and how I haven’t really achieved everything I hoped to, over the course of the years. I’ve had so many dreams, so many plans, so many good intentions, and they all came to nothing. Because I couldn’t sustain the level of effort required to make it happen. I ran out of metaphorical steam. I got worn out. I worked to excess, then I crashed, and I never fully recovered. Basically, my life reads like one failed experiment after another.

And yet… I’m still here. And thinking about suicide and death and mental health, these days, I realize just how much of my life has been structured around keeping myself alive and mentally healthy, as everything around me has seemingly conspired to do the opposite.

I live in a profoundly hostile environment, full of social land mines and ample opportunities for faux pas that carry a heavy social toll. I’m active in my world, but I’m not at all comfortable in it. And while I do contribute, and there are a lot of people who really love and care for me, if I could leave it tomorrow for a destination that suits me and who/how I am more comfortably and healthily, I would — without a second thought.

But I can’t leave. The supports I’ve got, which I’ve worked so hard to put into place, are just now starting to “bear fruit”, as it were. After years of really scary precarious living, I’m finally in a place of stability that I can build on. And I have a household to support, including a disabled partner, so I’m not going to ditch my job anytime soon, unless something equal or better comes along.

That being said, I realize it’s been this way for my entire adult life. I’ve made my choices, and I’ve situated myself in life in the most economically advantaged position I can get, at a great cost to my mental and physical health. So, I need to go to extra lengths to keep myself viable.

That means… books! That means… taking the whole weekend off and decompressing… writing, reading, researching. That means, surrounding myself with stuff that brings me pleasure, whether it’s artwork I’ve made or pictures I’ve taken or art and photos I’ve bought from other independent artists. My home is full of many, many relatively inexpensive things that I love, which I (and my partner) just happened upon in our travels. A little figurine that cost $2. A Chinese hand fan that was given to us by friends whose wedding we DJ’ed. A giclee of a painting of a scene not far from my childhood home, by an Autistic woman I know. Pottery I threw many years ago, which I still love.

And my research… My special interests have varied and been in flux, over the past 10 years, but I still have the books. And when I dig into them again, I realize just how much they have helped me, over the years. All that reading, all that journaling, all those notes… they may never come to anything in the big, wide world, but they’ve kept me sane. They’ve kept me healthy. They’ve given me the outlet and the self-expression I needed, away from the pressures of professional performance.

And that’s a beautiful thing.

So, as my birthday approaches, and I start to slip into regret over all the things I never managed to accomplish, I have to remember — I’ve been very, very active in the field(s) of my choice over the years, and I’ve made some pretty amazing contributions to those fields within the sphere of my own personal life. It’s kept me alive, and it’s created something beautiful in my life — as well as indirectly in the lives of others who I’ve helped because my intense “special interests” made it possible for me to function.

That should count for something, to me. And it does. Just because nobody else knows about it, doesn’t mean it didn’t happen.

If a tree falls in the forest, and I’m the only one who hears it, yes… it does make a sound.

A very loud sound, indeed.

#Autism and #suicide / suicidal ideation… for starters

Trigger Warning

For the record, I’m not sure where this blog post is going to go, so if you get triggered by talk about Autism and suicide, it’s probably best not to read this. There are so many other really great things written on the blogosphere. I encourage you to seek them out instead of losing time here.

Camouflaging may be an autism specific marker for suicidality.
Camouflaging may be an autism specific marker for suicidality. Pretending to be neurotypical may literally be killing us. Wow. #INSAR2018  From Sara Luterman  ‏@slooterman

So, Autism and suicide. Apparently it got a lot of attention at the latest INSAR conference in Rotterdam, last week. And a lot of people on Twitter have been talking about it, since.

I have mixed feelings about suicide. I’ve dealt with suicidal ideation since I was a teenager. I can’t recall having that issue when I was younger — I think I was way too overloaded all the time to spare much thought about anything being different for me (i.e., not having to endure a miserable life). Then again, as challenging as my childhood was, there were ample opportunities for me to decompress and experience the ecstasy of special interests — and, well, just be and autistic little kid.

My mother actually loves to talk about what a little scientist I was, when I was younger. She thinks it’s hilarious and fascinating (not pathological) that I dismantled “girl toys” that were given to me, to see how they worked and use them for different uses, rather than playing with them as they were originally designed. All the stuff that would have qualified me for a DSM-V autism diagnosis and pathologized me within an inch of my life… well, those were all just quirks I had. They were the things that made me… me. And both my parents really loved and enjoyed that.

Of course, home was one thing. School was another. I was bullied intensely all during 5th and 7th grades, and I really struggled in many ways. But I ever thought about ending it all. When I got into high school, that changed. And I have to say, looking back on my four years there, I did engage in self-injury… but in the form of cross-country running. I ran myself ragged. Wore myself down to a rail, with my intense workouts. But I was fit, and I was winning, so it didn’t stand out at all.

I also started drinking in high school, and that took the edge off my intense discomfort. But it took me down some very dark roads, and when I re-emerged from my drunken haze(s), things were even worse than when I’d picked up a drink the night (or afternoon or morning) before. Drinking, ironically, may have saved my life at the start, because it helped me take the edge off the intense discomfort and mis-match between what I wanted for myself and what the world was imposing. Even if it was temporary, even if it did screw me up, it was still a pressure valve I could use at will. But it became a case of diminishing returns, and drinking in fact pushed me towards killing myself a number of times, until I quit for good, 29 years ago.

Thoughts of ending it all (let’s call it “SI” for “Suicidal Ideation”, a term I hate, but which serves its purpose) started in earnest when I was drinking, now that I think about it. I was so, so miserable. So queer. So autistic. So confused. So set-upon by everything. People expected a tremendous amount from me — and they weren’t wrong to do so. But they never provided me the kind of conditions I needed to truly excel. They just expected me, like some automaton, to produce excellence on a regular basis. They expected religion to meet my spiritual needs. They expected conformity to provide all I could ask for. They expected me to crank out superior “results”, time after time after time, with no break, no respite. And I expected that of myself, as well.

Because that’s what was done. That’s how things worked. And if I couldn’t do that, then I was clearly broken.

I spent a lot of time believing I was broken. Even before high school and college… back to the early days of not “getting it right”. Broken. I was broken.

And as adulthood encroached, with its requirements and expectations, and practically nothing on the horizon that appealed to queer little, autistic little, decided non-feminine little me… what was the point of going on? Seriously. What was the fucking point?

The closest I ever came to killing myself was at the end of my drinking, when I was scoping out the best place to end it all. I was working at a business 5 minutes from my home (for a sexual predator who literally salivated over “sexy” Black women who walked past his office windows)… and I would drive home for lunch most days. Because I could. There was a bend in the road that everybody went around too fast, and I was pretty sure that if I drifted into the oncoming lane during certain times of the day, I’d be killed on impact. Those were the days before airbags in cars, or regular seatbelt use. Oddly, I never thought about the other person I’d be hitting head-on. I didn’t care. I just wanted to end it all. To be done with everything. To stop the pain I was causing myself and others.

Because I believed it was all my fault. I was broken. There was no way out. So, I was going to do the world a favor and get myself out of the picture.

Fortunately, I quit drinking before I could see that through, and I got a lot of support from a 12-step group that focused my attention on my sobriety and getting my life together.

I wish I could say that I never thought about suicide again, but for 20+ years, it continued to be an issue with me. Until I hit menopause, SI was a regular occurrence, and it usually happened when I was in hormonal distress — just before starting my monthly cycle, when my body was completely out of whack and felt entirely at war with itself. As it turns out, one my ovaries was probably malformed and malfunctioning, which could have been why every other month, my life descended into a living hell for no discernable reason.

My SI also tended to coincide with the holidays, when I was in overload, anyway, what with the seasonal changes, the disruption to my regular routines, all the bright, flashing lights, the increased social demands, and extended visits to family — replete with opportunities to open up all those old seeping emotional wounds. Combine a holiday family visit with PMS (that sounds so inoculous, doesn’t it?), and you’d better believe I wanted to kill myself. Just end it. Put a cork back in the bottle and keep the evil genie from ever coming back out again.

I can’t even count the hours I spent howling in despair and anguish I experienced simply living life. I scared the shit out of my partner, that’s for sure. And it happened a number of times a year — usually around the holidays.

Looking back now, I have perspective. And I have understanding about why SI was such an issue for me. I understand the despair that drove me to want it all to End Right Now as a failure of pattern detection. I couldn’t see beyond my immediate excruciating pain, and I certainly couldn’t detect any possible alternatives to what I was experiencing on a regular basis:

  • Pressure to Perform
  • Recurrent failure to perform
  • Isolation
  • Feeling broken, rejected, useless
  • Not being able to do what I truly loved often enough to make life worth living
  • Impossible expectations to conform and live up to society’s expectation of how and what and who I “should” be
  • Exhaustion — bone-crushing exhaustion that never quit
  • Chronic pain that would subside but never went away 100%
  • Brain fog, confusion, etc. from my impacted and constantly beset state

There just didn’t seem to be any alternative. There was no way out. Nobody was giving me a break. Nobody was just letting me be. It was just one incessant series of demands after another, and I wasn’t keeping up. I wasn’t keeping pace. I was drowning in all the things I was doing wrong, and there was little to no relief in sight.

When I hear people talking about how extraordinary it is, that so many Autistic people take an early route out of life, I have to wonder why. Do they not get how hostile the world is to us? Do they not see how futile it all looks to so many of us? Do they not know how impossible it all is for some of us to sustain and maintain the semblances of “normalcy” that are required, these days? What’s so wonderful about this world, so filled with anger and hatred and hostility and — worst of all — lack of logic and reason, that’s so determined to crush us under its boot heel, that we’d go to great lengths to stick around?

Seriously, who thinks the standard-issue world is such a great place? Yes, there are some really wonderful things about this planet, but the way things are set up, all of it is slated for complete and total destruction, while the vast majority of people just sit around and wait for it to happen — or buy popcorn and find a seat to watch the show. It’s an embarrassment, that so many people think this human-created world is the pinnacle of human achievement, and most days I know for sure that I really don’t belong here.

So, what keeps me around? The fact that I can make my own life exactly the way I want it to be. I’ve worked overtime for years, to get to a position where I can have a life that makes room for me. I’ve had to funnel a vast amount of energy into it, and it takes time and great spirit to defend it and keep it going. But doing that gives me a focus for all the anguish and sadness that’s a constant undercurrent in my life. It fuels me and motivates me to do more, to be more, to create more — and to do that in the ways I see fit, regardless of what anybody else thinks.

But most of all, the thing that keeps me from ending it all is curiosity. I’m too inquisitive and imaginative, to believe that Things As They Are is how Things Will Always Be. That’s highly unlikely. And I’m curious to find out what will happen, and what I can take from it.

Also, I know how fickle I am.

Seriously, if I were to throw myself off a bridge, there’s a 98.7452% chance I’d change my mind on the way down and kill myself against my actual will. I came close to doing that, about 5 years ago — I had the spot picked out and I was getting ready to get in the car and drive out to a bridge in western Massachusetts and jump. But then I thought about what would probably happen. I’d make the hour-long drive, and I’d get up on the cement span, and as I fell, I’d remember something that made my life worth living, but by then it would be too late to do anything about it, and I’d miss out on the rest of the experiences I could have had.

So, I didn’t get in the car and drive out to the bridge. I stayed at home and wished I were dead, instead.

I’m still here, as you can tell.

And I have more to say about this. But right now, I need to go to work and find out what’s going to happen now in that swirling mess of neurotypical mediocrity.

Figuring out this work flow thing… eventually.

Picture of newspaper with crossword puzzle and glasses and pen lying on top
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.

Should I write a post about #Autism and #suicide / suicidal ideation?

storm over sea

I’ve been wanting to write something about Autism and suicide for a long time, but I’ve been reluctant to do so.

Everything I say can be incredibly triggering (not to mention convincing about why it’s preferable not to live, sometimes), and I don’t want it on my conscience that I convinced anyone to end their life sooner.

Or that I somehow encouraged / validated that choice.

Everybody has their reasons, of course, and I can’t take the blame for others’ choices. But I’m sure you know what I mean.

I could password-protect it and only let people in who choose to see it. But there’s now way I’ll put it out there in plain sight.

It’s much too grim. At least I think so.

That being said, what do you think? Should I write something about it? I’ve got a lot to say, and a lot of personal experience w/ dancing w/ this subject. And it might help people understand.

I just don’t want to be irresponsible with it and make the world any worse of a place than it already is.

What do you think? Let me know in the comments below.

Thanks.

Update 16. May 2018 – I did write a post about it. And I’ll be writing more. You can read it here: