Am I going to be able to handle this? Do I have a choice?

Minoan bull leaping - three humans jumping over a charging bull

I’m in a modified “bull-leaping” state today. I’m getting ready for an extended trip with my partner, and she’s not doing well – physically, emotionally, or cognitively. She’s intensely anxious about the trip, where she’ll be speaking at an international conference. It’s a great opportunity, but with over 5,000 people there… yeah… it’s overwhelming.

So, there’s that dread/excitement.

And then there’s her physical health, which is not good. She doesn’t exercise. She sleeps a lot. And she spends most of her waking hours in bed looking at Facebook. She’s got mobility issues from arthritis and sheer inactivity. Muscle atrophy and all that. And she’s intensely allergic to, well, just about everything.

And then there’s the emotional piece. She’s all over the map. Cognitively, she’s been declining over the past few years, and with that comes amped-up emotions. Lots of fear. Sadness. Frustration. The whole nine yards.

So, it’s become increasingly challenging to live with her, deal with her ups and downs, and also handle all of the extra work of literally taking care of her. As the years pass, she’s less and less able to take care of herself, which I haven’t exactly helped because of my own rigidity. If she does things “wrong”, I have a tendency to flip out, and that keeps her from doing what she needs to do (even if I think it’s wrong – and, for the record, it is).

Autism has not helped us, in this respect. And as time goes by, and she’s increasingly dependent on me for so much, I feel the sting of my own Autism even more. It’s impairing, at times, this way I am. And just trying to keep up with everything – including increased business trips – really strains my patience and my endurance.

I’m a workhorse, though. I put my head down and soldier through. I make it happen. Because I can’t see any other way. And I might as well get used to this, because I’ve promised her I will never, ever put her in a home. And I won’t. People tell me I’ll reconsider that, on down the line, especially since she’s considerably older than me, and just when things are starting to fall apart for her, they’re starting to come together for me, according to mainstream standards.

But I can work around this. I can work with it. I don’t have to be flying all across the country to seek my fortune, like others expect me to. I don’t even want to do it, to be honest. I’d rather just stay home and work on my own stuff and spend time with my sweet partner.

It still gets to me, though, how limited support systems are for people like me. Those of us who have a unique constellation of qualities that make living in the world-as-it-is extremely taxing, and who have specific needs that aren’t typically addressed by the usual offerings… well, we’re kind of out of luck, in many respects. If we’re “too functional”, we get accused of just wanting attention. If we’re really impaired, we get our agency taken away and we’re treated like wards of society. If we’re on-again-off-again, we can’t really ask for help, because while we may need help one day, we may not need that the next.

It’s so frustrating. It’s maddening. Sometimes I just need help, but people’s own issues get in the way of them being able to be genuinely helpful.

Either they feel all sorts of pity for me, because I’m “impaired”.

Or they feel disdain, because I can’t do for myself.

Or they take it all in, watch closely, and then go talk to other people about me. That’s not helpful at all.

Gossip. Anxiety. Fear of perceived weakness. Total inability to treat others with dignity and respect, unless they’re just like them.

It’s worst with my family. Both sides are a problem. My family is a problem, because they love to gossip and judge and they don’t get the variable abilities thing (even though they’re so Autistic, it’s scary). My partner’s side of the family is so judgmental and they don’t treat her well. They make fun of her. They act like it’s the end of the world, if she just can’t keep up with everyone. They’re so busy going a million miles an hour – to where, I don’t know, because ultimately, they just end up back on the couch watching endlessly mind-numbing television – and if you don’t keep up!!!, well, there must be something wrong with you.

It makes us not want to be around any of them. Which is why we probably won’t make the godawful marathon trip to see them over Thanksgiving and/or Christmas.

People. Hrmph.

But I digress. The first task at hand is to finish all the errands in preparation for the trip, get my partner up early enough that she has time to take care of herself, pack, and make sure we have everything we need in the van. I’ve got the battery for her power scooter charged, and that’s good to go. I really do need to develop better systems for taking care of both of us. I’ve been resisting doing that, because it feels like capitulation. But screw it. I’ve gotta come up with some reliable supports for myself and make sure I’m up to the years ahead — however many those will be.

Caretakers often have their lives cut shorter because of the stress of caretaking. But I can’t let that happen to me. Somehow, someway, there’s got to be a way to engineer this properly.

And so I’ll do that. Through logic. Reason. Perseverance. And all the faculties I have at my disposal, which are many and various.

Main thing is to get enough sleep. If that doesn’t happen, everything falls down.

But enough of that. It’s time to kick this machine into gear and motor into the fray.

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When it all comes together… eventually

person climbing up hill through snow carrying a snowboard

Well, that only took 15 years…

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

And finally it’s all coming together.

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

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

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

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

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

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

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

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

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

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

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

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

The beginning of suffering is the giving of f*cks

mushroom

What a horrible summer it’s been. I don’t know what’s worse: the heat, the long daylight hours, the humidity, the constant rain, my lack of exercise, my lack of interest in doing much of anything other than my own thing, the hyper-political pointlessness at work, or my general despair about anything ever getting better.

Good gawd. I’ve been in a terrible place, on and off, for months, now. I’m surprised I’ve gotten anything done.

And yet… I have. And for good reason. I can turn my laser focus to the positives and block out all the negatives, and I can continue apace, “killing it” in a manner of speaking, although everything around me is going to shit, and nobody seems capable of stopping the downward slide.

I was just thinking about this yesterday… how just about every job I’ve ever had has sucked in a very big way. I mean, just sucked. People undermining me. Bosses working against me. Power struggles. Office politics biting me in the ass (there’s an image for you – you’re welcome).  Terrible working conditions (too much ambient noise / light / distraction). Being passed over for promotions. Being shut out of important conversations. Being shut out, period, by politically connected people who have used me as a bridge to overcome their own differences (I work it out between them, and then they buddy-up and push me out of the way).

It’s all happening again. So, fine. Screw it.

The chief problem in all of this, is that I give a damn. I give a f*ck. I really do. I care about other people and how I relate to them. I try my best. But they can’t be bothered to reciprocate. Or they take advantage, because they’re weak and manipulative. And so I end up getting the proverbial short end of the stick.

I care. I get involved. I give a f*ck.

Note to self – stop doing that.

Truth to tell, most of what goes on in the day-to-day has absolutely nothing to do with me or the things that matter most to me. And I’m tired of playing along.  I’m tired of the games. The bullying. The posturing. The going behind my back to maneuver around me. Yah, I’m done with that.

Everybody else who wants to squander their life force on that… be my guest. But I won’t be joining you.

Of course, that’s easy for me to say from the comfort and safety of my own home. When I’m in the thick of it, with my hyper-empathic self, it’s a whole lot more difficult to block it all out. And honestly, I worry about it all hurting my ability to do my job and keep the money coming in. I need a paycheck. I have a household to support. Yeah, The Man has me over a barrel, that’s for sure.

But I probably make it worse for myself than need be. I’m way too hard on myself. Much, much harder on myself than anybody else is. Heck, everybody else seems to think I’m close to perfect (ha ha ha, how hilarious). At least, that’s what they tell me. How little they know… Oh, how little they know…

Well, anyway, it’s Sunday. I have stuff I want to do, including driving out to the country to look at the fall colors. My partner and I are headed west with her new scooter, so she can join me on walks and sightseeing. We actually went shopping together for the first time in a long time on Friday night. She on her scooter, I walking at an actually comfortable pace. Pretty magical.

Eh, there’s to much to say to fit in one blog post. I need a walk. Need to air myself out. Time to don some outside clothes and head for the back roads.

Later, all…

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.

Sharing: Why IQ scores are erroneous for autistic people

bell curve showing distribution of IQ scores throughout populationSharing from Redefining Normal: A Young Women’s Journey with Autsm

When it comes to measuring the capabilities and challenges of autistic children and adults, IQ is one of the main measures that is employed.  However, there are some reasons why traditional IQ tests are not the most accurate ways in understanding the full scope of individuals on the spectrum.  For label-obsessed neurotypicals, these tests can provide explanation in a simplistic matter in understanding the capabilities and challenges for those on the spectrum.  However for the autistic community, these tests can be a disservice especially when it comes to educational placement and provision of services. It is with this post, I will discuss some of the flaws or shortcomings of traditional IQ tests.

Read the rest here: Redefining Normal: A Young Women’s Journey with Autism

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.