When being #Autistic was a very, very good thing

child standing in front of a body of water, looking out at sunset with rays of light showering down
I wasn’t alone in my wonder at the wonder of it all

It’s been an incredibly busy past 4 weeks… or has it been 6? Business travel, deadlines at work, projects not turning out the way they should, people making excuses, left and right, and the very people who are making a mess of things taking control of all the projects.

Ah, me… I’m at a loss, as are many of my co-workers. It’s incredibly dispiriting. But at least I’m not alone in my despair. I have plenty of company (fortunately or unfortunately).

One of the benefits of being too busy to think about much, is that I find out what matters most to me. Because that’s the stuff that bubbles to the top of my thought process. That’s the stuff that works it way out, like rocks emerging from the soil in the New England spring. All the rest of the stuff I’ve been thinking about is apparently compost… it will go through its decomposition and melt back into the background of my life. But some things have “sticking power” and won’t go away.

It’s those things that I’ve been thinking about.

So, of course I’ve been thinking a lot about my childhood and how it set me apart. When I was younger, I was tempted to believe that my lot was terrible, painful, horrible. That it was too punishing for words, and oh, how I suffered. It’s true. I did suffer. But that’s just what happens, sometimes, and I’m through with thinking that suffering is a sign of aberration, of something being amiss. Nope, sometimes that’s just how things go. And the magical part of it is, I get through it. All of it. Just because it’s uncomfortable, even painful, doesn’t mean it’s necessarily a bad thing. Because, after more than half a century on the earth, I now realize that pain is very much a part of life — but suffering is something I make worse, myself. By judging and resisting that pain.

It’s much more productive to take a Meh attitude — a Meh-titude, if you will — and get on with it. Get my mind off the anguish (much of which I’m causing myself) and just get on with living.

My childhood, in retrospect, really worked in my favor. It prepared me for the world as an adult. It made me into the person I was. And it was full of wonder… precisely because I grew up in an autistic household which absolutely, positively accepted my Autistic traits for what they were and revelled in them, rather than pathologizing them.

Don’t get me wrong. It wasn’t all delight and bliss. My childhood was, in fact, extremely difficult, both inside and outside the home. My family got a lot of things really wrong. But the parts that my family got right, they got really right. And I’m a better person for it. So many of the “disordered” behaviors — repetitive motions, echolalia, alternative play styles, talking a “blue streak” about passions, having passionately focused interests at all, even my frantic energy — they were all recognized and welcomed as the things that made me what I was.

My Mom, in fact, loves to talk with exuberance about so many of my behaviors that qualify me as Autistic. Singing a song to myself over and over and over for days at a time. Dismantling a toy vacuum cleaner that was given to me, so I could play with it my own way. Immersing myself in Native American studies, learning about trees, animal tracks, animal scat. Talking, talking, talking some more about the things I cared so deeply about. And running wild, all over the place, making my Mom nervous, but never actually getting hurt.

My parents remember those things as wonderful. Because they were me. They could also relate. And for all the things I did wrong and was punished for, at least — at the core — they recognized and loved me for who I was. Because that was me. And they’d both been punished enough as kids for their own Autistic traits, that they never wanted to do that to their own kids.

That’s one thing they certainly got right.

And I’m glad I can see it now. Because for years, I got so hung up on the things they got wrong, for their shortcomings, their failings, their neglect and abuse, that I missed the ways they were so good for me, so healthy, so helpful and supportive. And although I’m still at odds with the community of my upbringing (they still seem a bit cultish to me, to be honest), I can still see there was a lot of good in it for me, that helped make me who and how I am.

It helped make me healthily Autistic, in so many ways. So much so, that I have to just look at people (or shake my head when I’m online) when they talk about Autism only being a problem. Or only a disorder. It can be problematic. It can be disordering, even disabling. But in and of itself, Autism is not the enemy. And it’s not only one thing.

It’s not only one thing at all.

It’s many things. And we can choose for ourselves what we’ll do with the full spectrum of experiences. That much is very clear to me.

With that being said, it’s a gorgeous day. I have an all-day conference call I need to attend — and no, I’m not looking forward to it. It’s part of the job. It doesn’t happen every day. I’ll survive. Plus, I get to work from home while I’m doing it, and I can sit out on my deck and enjoy the breeze and sunshine, which is wonderful and delicious today. There are worse ways to make a living, that’s for sure.

So, off I go…

Advertisements

Something to show for it all

person walking across an empty parking lotI’ve been thinking a lot about my situation, lately, and the thoughts haven’t all been very encouraging. Basically, I feel as though I’ve spent 25 years building up my skills, gathering experience, learning some really tough lessons along the way… only to be pushed out of the way for political reasons, or by people who want what I have, but haven’t actually earned it.

I know, I’m being incredibly unrealistic in this respect, wanting to see some sort of payoff for all the years of investment and dedication. That’s not how the world works, I hear you say? Yeah, well, in some parts of the world it is.

And I’m not currently situated in that part of the world.

I suppose this is just what happens, when you’ve been around for a while. Eventually, people who understand what you do and get it, “age out” and move on. I’m really noticing that, these days, because the people who really understand me and realize what it is that I do are 10-15 years older than me. And they’re ramping up their exits from the world I inhabit. Retiring. Or dying. Disappearing, in one way or another. So, my allies and advocates are getting fewer and farther between. Which leaves me standing alone in the midst of the crowd, wondering if everybody realizes just how mediocre everything has become…

I can’t shake this horrible feeling of having wasted so many of my years. After all the work, after all the dedication, after all the determination, what do I have to show for it? I can’t go back to school, because while I have the money, I don’t have the time or the bandwidth. I’ve tried it. I can’t manage an academic course load of any size while I’m working full-time. My partner’s health is declining, and it just feels like I’m biding my time till she worsens and passes away — which is a terrible way to feel, when it’s the love of your life. I don’t know what’s happening with work, or what I even want to happen. I would sorely love to get out of technology, but they money’s too good, and I’ve sunk too many years into that activity to move into another space. I have some ideas about how to move forward, but nothing is very clear, right now.

Well, anyway, the world is full of opportunities, and if I don’t see them, that’s on me. I just get a little tired of doing so much work and not having much to show for it. Or maybe I’m just looking for the wrong payoffs. Maybe I’m casting too wide a net and expecting too much from my efforts. I tend to do that. I have plenty of ideas in my mind about how things should be and what should come of them, but I’m not always tapped in to the reality of how things truly work.

And maybe I’ve been seeing payoffs all along, I just haven’t realized it, because I’m so focused on doing and doing and doing… always moving, always making, always creating… the point is the journey, not the destination, with me. But every now and then, I stop and look around and wonder what in heaven’s name I’m actually working towards.

I’m in a transition phase, that’s for sure. I work with people who actively try to thwart what I’m doing, who hide their agendas from me, and who take credit for my work. They don’t know what they’re doing, actually, and they don’t listen to my guidance. They’re too busy finding out for themselves. I’m superfluous. Especially since they believe that nothing now is the same as it was 25 years ago. I’m not going to change them, so I need to amend my own point of view and/or my own situation.

That being said, I need to go out for a walk. I made a point of bringing walking clothes with me, so I can stretch my legs. It’s 3 hours ahead of my usual time, and I have a few hours before I have to start my official day. I’ve got lots of room to roam, which is good. And I can think about how I’ll spend my afternoon on Friday, since I’ll have a lot of time to spend after the conference is over. It’ll be Friday afternoon, back East. Nobody will be working or emailing me. I’ll be able to explore and take in some museums, I think. There are lots of museums nearby.

Anyway, enough typing. Enough stewing. I’m in limbo, not sure where I belong, not sure where I’m going. Just floating, trying to keep myself upright in the roiling sea. Unmoored. I’m unmoored. But I can’t think about that now. I need a walk.

About that Walk…

girl walking in the woods

I was supposed to walk, this past weekend. Every single day of my three-day weekend. It was supposed to be glorious. Delightful. Indulgent. Quelle luxe! And inevitable.

That’s what I do on long weekends, when everybody’s off work on a Monday, and things are quiet around town. Families head north to the lakes and mountains for the federal holiday. Those who stay behind either head out to Lowes and Home Depot to pick up supplies for their gardening and home improvement projects, or they throw the kayaks on the roof racks of their SUVs and head to the nearest rivers. They run. Cycle. Hop on their Harleys and roar down the open roads. People scatter on those weekends, and that keeps me close to home.

I have my walking routine down, based on years of experience. Preparation is simple, straightforward. Practical. I change into my favorite walking clothes: a pair of baggy, ripped-up cargo shorts with enough pockets to comfortably hold keys and phone and tissues and earbuds and bug netting and a few pieces of candy… with a soft blue-green t-shirt worn over an even softer white undershirt… all of this over a comfortable sports bra and underwear that won’t chafe or bind. I hang a medical alert tag around my neck to make sure folks know whom to call if they find me collapsed by the side of the road, and there’s my trusty baseball cap pulled snugly on my head. And — at last — my sandals. It’s now warm enough to trade socks and lace-up walking shoes for those sturdy vibram soles strapped to my bare feet with velcro, leather, and some sort of finely netted fabric. I always know that summer is here when I can pull on my sandals. And I rejoice. I grab an apple from the fruit bowl, wash and wipe it dry, grab my small set of keys and maybe a piece of candy or gum for later, and head for the back roads.

I had my routes all mapped out, for the three days. Nothing fancy. Just the usual. With extra time to do the full circuit. I’d head down the road for a mile, past the “McMansions” built on the high hill facing a breathtaking view to the west… careful round the bend at the convergence of three roads where people always take the turn too quickly… walk another two miles under thickening forest… turn left again and walk a quarter mile past the mix of old and new houses, farms and single-family dwellings with their neatly trimmed lawns… up a slight incline, across the secondary road that’s full of motorcycles and bicyclists when the weather is nice… trudge past the town line sign… and disappear down the horse-farm-lined road, where people are too busy working on their gardens or cars or property to notice me passing by. At the stop sign where the road “T”ed into another, I’d about-face and head home. Or I’d get adventurous, take a right and keep going, till so much time had passed that I had to turn around to get home before dark.

At last, after weeks of overwork hunched over a laptop for 10 hours at a stretch, I had enough time of my own to extend my route into an extended adventure — to find out what’s around the corner that’s normally my turnaround point. Enough time to keep going. Keep walking. Sunglasses would block the sun. A baseball cap would shade my eyes and keep the bugs off. And if the bugs got to be too much, I’d have my netting to pull on over my cap and at least keep them off my face and out of my nose and ears. I had three days off work. Time to rest. Time to relax. Time to walk.

Disappearing that way on weekends is one of the things that makes my weeks tolerable. It dissolves the work-week like nothing else. Walking. Just walking. Doing nothing “productive”. Not talking to anyone on my phone, not listening to music, not planning or executing or planning to execute. Not even dictating ideas that came to me along the way for use later on. Barely interacting with people as I passed. Socially isolated from passers-by in my apparent mission to Get Somewhere Soon.

My own little 21st Century heresy. Delicious.

I had it all planned.

And I almost made it.

Except, I didn’t.

Saturday morning found me gardening. The weather was perfect: cool and clear, with a breeze to keep the mosquitoes at bay. Originally, I thought I’d just stop by my community garden for a solitary, contemplative hour. I’d make sure the peas and beans were up, weed a little around the peppers and tomatoes, water the celery, then head home for a shower and a walk. I could do my errands later, after I got back from the road.

As it turned out, other gardeners were tending their plots at the shared space. So, of course we had to talk. Or rather, they had to talk, and I decided to oblige them. That was fine. They all seemed nice enough, and they needed to get to know me. It always surprises me when other people want that. Isn’t it obvious, I’m a wonderful, conscientious person who’s comfortable letting other people be who they are? Is it so hard to tell that I’m generous of spirit and non-judgmental, and people can relax around me, even if they’re not on their best behavior?

Apparently not. And it exhausts me, all these prerequisites for social interaction, as though any of us has the right to condemn another person for a quirk we don’t understand. To my Autistic mind, we should all simply let each other be, give each other space to be who and what we are, provided that we’re not harming anyone else. I don’t need other people’s approval, but others clearly need mine, and it’s so tiring, to convince them that either they already have it, or they really don’t need it from me, to begin with.

What is up with that? It makes no sense.

Figuring people out is an experience in extremes for me. Either I fail fantastically or get it right without even trying. The times when I fail, I am completely clueless about facial expressions, voice inflection, hints and mentions. I don’t pick up on conversational prompts, where I’m supposed to follow a statement with a question. If someone makes a statement, say, “It’s a beautiful day!”, then they make a statement. If it’s true, then no further discussion is needed. We’ve established it’s a beautiful day. And we can move on. To things like practical tips for keeping moths and slugs off my new plantings.

For that matter, I often don’t understand why people even bother stating the obvious. It’s confusing for me. Of course it’s a beautiful day! Water is wet. Wind blows. The earth spins. Big deal. Why in heaven’s name are they so excited about announcing the obvious? Then I have to remind myself that they’re probably socially insecure and they’re searching desperately for a topic of conversation that’s neutral, safe, non-controversial. So they can talk. So their voice vibrates their vocal chords, which stimulates their vagus nerve and soothes their fight-flight response. Some people have to talk, or they quiver with fear. I understand what it’s like to be constantly shaken, so I accommodate their need. And I convince myself to respond “Oh, yes! Just lovely! We’re so fortunate!” so we can have a few minutes of neutral sharing of something positive… and get on with our gardening.

Then again, I can sometimes pick up on other people’s natures right off, with that Autistic “sixth sense” that some of us have. I notice so much, at times, I don’t need to talk myself through the rationale of responding to inane observations. I don’t need to be psychic. Body language, pacing of words, shifting of weight, loudness of voice, personal space, facial expressions, eye contact, topics of conversation… it tells me more about them, than they probably want me to know. It comes in handy — and it sure would have helped, 40-some years ago when I was still learning.

They say Autistic people can’t “read” others. We have communication issues which are the most defining feature of Autism, they claim. Plain and simple.

I say, social interaction is never plain and simple. It’s an overwhelming embarrassment of riches for people like me — there’s so much personal / impersonal data to parse, and there are so many disconnects between what I observe and what people say it means about them, who can make sense of it all? If people simply acted and didn’t provide a running commentary about how they want to be perceived, it would be so much simpler.

So much simpler.

But nah – that wasn’t happening last Saturday morning. And four hours after I arrived, I was exhausted. I’d gotten to know seven of my co-gardeners, heard all about a dispute with the head gardener that one gentleman still resented, and I’d gotten a thorough introduction to the insecure overcompensation of the wife of the family who had the plot beside mine. All while, I did my best neurotypical impression — pro-active, friendly, outgoing, secure, experienced, invested in the community. Gung ho. I know how to do that. I was raised with community and gardening. I do an excellent impression of a seasoned, connected, all-organic caretaker of the earth.

And no one can hear me scream.

Sigh.

So much for my morning.

I walked out of the garden in a kind of stagger. It caught me as soon as I was past the garden gate and was able to drop the making act. The sun was hot. The mosquitoes were swarming. My head was swimming with all the interaction, along with a nagging sense that I’d said a few things wrong to people. Their intermittent sidelong looks told me I was veering off course, but damned if I could tell what I’d said or done that warranted the stink-eye. My mouth just kept going. Whatever you do, I tell myself often. Just stay in character. Carry on as though it’s all completely normal, and they’ll follow your lead. Just keep on keeping on. And I did. Like I usually do. Until I can’t.

Fortunately, I cleared the garden gate before I imploded. Lucky. Practiced. Shaking.

I drove home slowly, my head spinning, hands shaking, taking the long way back to avoid having to turn across dangerous lanes of oncoming traffic. No way could I go for my long road trek in this condition. Not on the back roads that are full of cyclists and power-walkers and drivers taking their classic convertibles for a spin while the weather is perfect. I’d have to have my wits about me, to get far enough down the road to disappear. And that wasn’t happening.

Not yet.

Run the errands. Eat lunch. Nap. I’ll walk later. That’s what I promised myself. And that’s what I did. Mostly. Mailed the package at the post office. Took the trash to the dump. Picked up some food at the farm stand down the road. Put stuff away around the house. Ate my lunch. Took my shower, then my nap.

But when I woke up, I was still shaky, and I just didn’t feel like going out on the roads. Not so late in the afternoon, when all the bugs were starting to come out en force. Bicyclists. Walkers. Joggers — sorry, runners. Drivers. And bugs.

No thank you. Tomorrow. I’d do it tomorrow, I promised myself.

And that’s what I’ve promised myself for weeks and months, now. I’ll take my walk after I get everything else done that needs doing. I’ll get out on the roads for a leisurely roam, once things are put in order at home. I want to. I really, really want to. With all my heart.

But it never seems to happen. At least, not the way I want, or even plan. The rest of my life demands my attention. Things have to get done, and if I don’t do them, no one else will. I don’t have the energy to explain to people how to do them properly — shopping and cooking and cleaning and gardening and making repairs around the house — and cleaning up after them is more tiring than doing those things myself. I’m tired, so tired, from the week’s work that’s so social, so “engaging”. I’m tired from keeping up, from working at not lagging, from all the role-playing and forced positivity that others reward so well. It’s the price I pay for inclusion. I pay the price directly, while it costs others indirectly, with my reduced ability to pretty much deal with anything. Anything at all.

Walking far enough to disappear… well, that’s become a luxury that my stingy, obligatory life doesn’t want to make room for, these days. Every now and then, I manage it… just a quick 20-minute walk in the morning, or a 10-minute stroll around the parking lot at work. But those long, meandering saunters… who knows when I’ll be able to do them next?

Something else will have to give, and that something shouldn’t necessarily be me. I’ll figure something out, of course. I always do.

If I can pass as neurotypical, I can do just about anything.

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.

#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.