Social Incompatibility: Yet another thing that’s not true about this #Autistic individual

crowd of cheering people at an outdoor concertSupposedly, because I’m Autistic, I’m incapable of interacting with non-autistic people the way they want me to.

Untrue. I wish it were true, some days. ‘Cause all the interacting with neurotypical people just gets so exhausting. I’m bone tired, starting around 10:30 a.m., every single day I have to go out into the NT world. And I just get more tired, throughout the course of each day. The nonsensical decision making and priorities are just so wearing

But what’s an Autie to do? I’ve gotta make a living, and that means I have to get out in the thick of things, figure out how to navigate it all, and just get on with my life.

I also need to interact with other people on a regular basis. I can’t speak for anyone else, but if I don’t get out and interact with the world every few days or so, my thought process starts to get pretty “out there”. I get a little suspicious and paranoid, actually. And my mind starts telling me all sorts of things that aren’t entirely true. I need people around (in person, not just online) to provide details I’m overlooking in my very rigid thinking. I need them to keep me grounded.

It helps me.

But it’s not easy. Oh, no. It’s not easy at all. I mean, I’ve figured out some tips and tricks and whole lotta hacks that will get me through social interactions without offending everyone in sight and pissing off people who misunderstand me. But it doesn’t come naturally to me.

And therein lies the “rub”, as they say.

Because my hacks work. My clandestine stimming, concentrating on a place on someone’s face that isn’t their eyes, nodding periodically, using a finely tuned prosody and cadence to my speech… it’s all very effective. It’s attractive, even. Which means people want to interact with me. They love to interact with me. They seek me out. They come looking for me at work. They look me up online. They ping me on social media. They hang out with me at the 2 parties I go to, each year. They say they want to see more of me. They invite me to their homes. They invite me to events. They want me around, and they love my company, because I can offer them something they can’t get anywhere else — compassion, empathy, focus on them as the center of my world when I’m with them, interesting trivia (yep, got lots of that), laughter, relaxation, acceptance.

People love me. They can’t get enough of me.

In the words of the Talking Heads, “My god. What have I done?

It seemed like a good idea, to develop all these coping mechanisms over the years. And they have all helped me to get good jobs and keep them and provide for my household at a level that most Autism researchers would probably declare impossible for someone “with my impairments”. But it comes at a cost. It all comes at a cost.

And that cost is exhaustion.

Well, fortunately, I’ve figured out some ways to get through, even if I am worn down to the bone. I keep going. I focus on the task at hand. I amuse myself periodically throughout the course of each day. And I have my early mornings to myself, as well as part of my evenings. I manage to wedge in things I really love, here and there, punctuating the interminable slog that is my life in the non-autistic world with moments of sheer bliss.

So, that’s something.

And it makes the rest of my life possible. Which is good. Because nothing truly worthwhile comes easy, I believe. And I can’t expect the rest of the world to accommodate me. Other people have their own problems, and my challenges are not even on their radar. If I want to keep a job, stay out of jail, keep a roof over my head, keep the cars in the garage, save money for emergencies… basically, have an adult life, I have to make choices and sacrifices. That’s how the whole adulting things goes, and our current climate of hyper-customization and convenience and being catered to and accommodated at every turn is not helping people cope with the inevitable challenges of just living a responsible and rewarding life.

Life as I experience it is a series of challenges which involve to varying degrees a regular influx of frustration, pain, anguish, sadness, disappointment, disillusionment, betrayal… you name it. But that’s how it goes. And if I want to have the life I need to have, I’ve got to figure out how to manage it all.

Which I do. Including the social stuff.

That being said, I have to get myself ready for work. I’m going in to the office today, after being home yesterday (I had nonstop meetings on the phone from 8:30 – 4:30, which is its own particular brand of misery for me). I’m going to be around people who are unrealistic, insecure, demanding, politically devious, clueless, and socially needy. That’s the deal. And I voluntarily engage with these people, learning tons about myself in the process, and making a living at it, too.

I’m not a fan of it all. But they love me.

So, that’s something.

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Do #Autistic people *have* to die earlier than non-autistic folks?

New York Skyline with ice floating in riverYesterday I came across a really thought-provoking piece by Sarah Kurchak, I’m autistic. I just turned 36 — the average age when people like me die.

The stress of living with autism is exhausting.

On March 21, 2017, CNN published an article on a new study from the American Journal of Public Health that found the average life span of an autistic person is 36 years. I wasn’t shocked by this news. I know how dire things can be for so many of us on the spectrum, but that number struck me for a very specific reason. I had just turned 35 the previous month.

Since I learned this news, I’ve been anticipating the milestone of turning 36 with a mix of confusion, dread, and a host of other feelings I can’t quite articulate. I’ve had more existential episodes than usual, brooding about the meaning of life. It’s been a lot like a midlife crisis — except that (I kept thinking) my own midlife might have happened as long as half my life ago. The average age of death for autistic people who live to adulthood might be older than 36 (and as of now, there is still no age-specific data). Still, the figure from the research journal haunted me.

At some point between that moment and now, I made a pair of promises to myself:

1. I had to make it to 36.

2. Once I did, I needed to do something to mark this morbid accomplishment — perhaps writing something to help the next generation of autists approach their own birthdays just a little easier.

{Read the full article here}

And while I’m really glad that she wrote it, it signals a number of massive gaps that I really feel we need to address — and that I, as a 52-year-old Autistic woman who grew up around many, many, other Autistic people and relatives, many of whom lived to a very advanced age (try 103… my uber-Autistic college professor grandfather lived out his days with joy and purpose). And their quality of life was not shit (sorry Grandpa, I had to swear).

Frankly, it kind of depresses me that all the news coming out about us is bad. And it also depresses me to think about how many truly useful hours we spend trying to fix shit that’s just plain wrong, instead of living our lives to our best, enjoying ourselves, finding purpose and meaning, and having the kind of superlative quality we can have.

Yeah, living Autistic in today’s world is no picnic. Seriously, it’s incredibly stressful and defeating at times. The problem, from where I’m standing, is not that things in general are not to our liking, but that we expect them to be… and when they’re not, we’re caught off-guard.

This is a problem. For everyone. But mostly for us. Yes, the world is failing us. The rest of the world is neglecting to shield us from neurotypical aggression and unrealistic non-autistic expectations. People are mean-spirited and cruel. There’s a lot of pain, and too many people are more than happy to pass their pain along to others — especially if we seem weaker or more vulnerable than they.

But guess what? That’s the deal. That’s how people are. This is not news. And just as you wouldn’t necessarily light candles and hold a vigil for someone who saw all the warning signs around a tar pit, ignored the calls of others to stay out, crawled over a fence, and proceeded to wade into the muck and sink into it to their death… I’m not altogether inclined to weep bitter tears for people who are clearly able to see what’s what in the world, but keep pushing for things to be other than what they are.

Maybe I’m old and cynical, but the world can be a brutal place. So, we need to gird ourselves. And we need to spend far less time trying to change others… while we spend a whole lot more time on setting ourselves up for success. Seriously, the world is so full of amazing wonder and joy for Autistic folks — far more than for neurotypicals. We’re wired for joy, and we should bask in that as much as humanly possible

One of the most painful experiences in life is clinging to unrealistic expectations and non adjusting accordingly. I’ve done it plenty of times, myself, and yeah — it’s excruciating.

At the same time, one of the most wonderfully liberating things, is to accept things for what they are, and just get on with living your life, always working towards changing what you can — and understanding the difference between what can and cannot be changed.

To whit: My job situation.

I mean, it just sucks. It seemed like a good idea, when I first got it, and by many accounts I have done very well in it. But Autistically speaking, it’s a total setup. It’s not at all suited to my Autistic personality. It’s overwhelming, exhausting, and it requires that I be able to read other people and interact politically, communicate regularly, navigate social situations, and be on the phone with people on the other side of the world several times a day. How horrible! I haven’t bitched and complained about it as much as I could have over the past couple of years, but I’ve been suffering intensely from it.

And yet, there’s something to be gained from this. It’s been a fantastic experience, all the pain notwithstanding. And I’ve learned a lot. The biggest lesson has been that this is not the job for me over the long-term, and I have to get the hell out. I’ve “taken my medicine”, as they say, and I’m getting a lot in return. Street cred. A killer addition to my resume. Connections. And the pity of strangers, when they hear where I work 😉

Ha!

So, yeah, I could wail and gnash my teeth about how “ableist” and “discriminatory” my employer is, by creating this kind of environment. No shit. They are. But that’s a terrible use of time, because all my marinating in that pain isn’t going to change anything, and even if it did change for the moment, it’s not going to alter over the long-term. So, I take what I can get, emphasize the positives, and keep plugging along.

And I use every . little . thing I learn along the way to create a world that works better for me. Because that actually is something I have control over. I cannot possibly expect the rest of the world (non-autistic as it is) to shape itself to my needs. The government is not my friend. Legislation comes and goes, lest we forget. My employer doesn’t want to know I’m Autistic to better help me — they want to know, to shield themselves from a lawsuit. Authority figures are not in the business of tending to my needs. Servant leadership is all very well and good, but the vast majority of people and entities are just struggling to survive, and the people with the most influence are often the ones who feel most exposed and vulnerable. (My rant about our generally childish and 2-dimensional 21st Century view of “power” will come in a later post.)

The world is chock full of opportunities to make more of myself than I am today. I’m taking those opportunities, as chock full of risk as they may be. I’ll wade into the pain. I’ll pay the steep price. Yep, being Autistic is incredibly stressful, if I only inhabit the non-autistic world and chafe under all its myriad restrictions. But when I allow myself to simply BE Autistic, I accommodate myself, I arrange my life in ways that work for me, and I take care of my own shit, things get a whole lot sweeter.

It’s a new year. 2018. Year of the Dog. Last month of the Western astrological calendar. I’m tired of the same-old-same-old from the past couple of years. Time to keep getting more real every day, prioritize myself, my joy, my life, and focus on what really works for me.

Read Sarah’s full article about how sucky it can be to be Autistic in the world here. It’s a good one 🙂

Employable Me looking for #autistic folks to profile about #employment

This showed up in my comments section the other day. Check it out, it might be a good opportunity.

Hi there!
I am the casting director for the American version of the award-winning BBC television series “Employable Me.”

The TV series I cast, “Employable Me,” follows people with Autism, Aspergers and other neurological conditions like Tourette Syndrome as they look for meaningful, long-term employment. The job-seekers selected to appear on our documentary series will be encouraged to unlock their hidden talents with the help of experts, doctors and neurological specialists so they can at long last find the job that best suits their unique skill sets and strengths and creates a sense of purpose in their life.

I am reaching out to you both with the hope that our current search for people who have neurological conditions and that manifest incredible intelligence that has not been appreciated properly by potential employers, might be shared with people in your social networks that might be interested in our series?

We’d love for our search for jobseekers to be mentioned there in the off-chance that people in a situation where their condition has been employment-prohibitive to date, but who have talent to offer and who could benefit from being a part of our series, will learn about it and apply to be considered.

A summary of what we are hoping you might be able to circulate for us in an email blast is below my signature in this email.

I highly encourage you to view some highlights of our courageous series as first launched in the UK: http://www.bbc.co.uk/programmes/b09hlpl8
Liz Alderman
Casting Director, Optomen Productions
Liz.Alderman@OptomenUSA.com
http://www.OptomenProductions.com

JOB-SEEKERS WITH NEUROLOGICAL CONDITIONS SOUGHT FOR AWARD-WINNING DOCUMENTARY SERIES, “Employable Me”

Documentary producers at Optomen USA are looking for people with neuro-divergent conditions such as ASD & Tourettes who would like our assistance finding employment on the documentary TV series EMPLOYABLE ME.

A diverse workforce can be great for a business and EMPLOYABLE ME wants to dramatically shake up the system to prove it.

The job-seekers selected to appear on our documentary series will be encouraged to unlock their hidden talents with the help of experts and specialists so they can at long last find the job that best suits their unique skill sets and strengths.

Contact Liz.Alderman@OptomenUSA.com for more information on how to be considered for this opportunity.

Optomen Productions produces hundreds of hours of television each year for many of the major cable and broadcast networks including Food Network, Travel Channel, Nat Geo Wild, Animal Planet, Investigation Discovery and Bravo. Our most successful series include Worst Cooks in America and Mysteries at the Museum.

Visit http://www.optomenproductions.com/ for more information about our company.

Employable Me Episode 1: https://vimeo.com/165440168/eeef45ba00

Employable Me Episode 2: https://vimeo.com/194704968/f29ee23b44

Employable Me Episode 3: https://vimeo.com/165440167/911b02b210

Last-minute Christmas shopping went well, all things considered

Big box store interior with people walking through aislesMerry Christmas, everyone. I’m omitting the exclamation point, because there have been far too many of them, lately, and I’m in the mood for something more … subdued.

My list-making and task-charting worked, and I didn’t have to really think about what to do next, since it was all written down. That left me more energy and resources to focus on the tasks at hand and really give it all I had. I found some additional presents that I was so happy with — some of them I only discovered after a couple of passes through a certain section of the store. I had to keep doubling back, because I kept getting distracted by everything around me. But after I got used to the surroundings and got my bearings, I found some great stuff.

I went back to one of the stores I’d visited with my partner, a few days ago, to see if there was anything additional I could find. Sure enough, there was. I was more successful this time than last, because I was working alone, I didn’t have to keep her situation in mind, and I was more familiar with the store.

So many people were out yesterday… for a Sunday, it’s unusual. It was pretty disorienting. But then, it was Christmas Eve, so…

All in all, I had a pretty positive experience. I still got worn out after only a few hours, though. And it took me longer to do some things that I would have liked. I also would have liked to not see some of the holiday decorations at one of the stores I visited.  They were pretty scary, actually. For some reason, a buyer thought it would be a good idea to cover the torso of a headless female mannequin with red or green glitter, and attach it to the top of a small Christmas tree. It was a little nightmarish.

Mannequin Christmas tree
For the record, people, this is not stylish. It’s a little scary.

The scary human-Christmas-tree-cyborg aside, yesterday was a good day for learning… about how even if I’m left to my own devices, even if I’ve got the day mapped out, even if I’m crystal-clear on what needs to happen, I still have my limits at this time of year. And no matter what I do to mitigate the effects of uncertainty and More Things To Do, I’m still going to be really taxed by the environment.

No matter what I do, no matter how much sleep I get, how well I eat, how well I take care of myself in general, I’m still going to struggle with external circumstances and the super-duper, pumped-up atmosphere of the holiday season.

And yet… I really do love this time of year. Driving around on the back roads, the skies were clear and the world was suffused in ice. We had a lot of freezing rain on Saturday, which glazed everything in 1/4 inch of ice. And on Sunday, as the weather cleared and the sun shone, and all the muted colors of the slumbering trees and dead grasses and frost and ice and snow stood out in sharp contrast against the blue sky with its passing whispy clouds, I couldn’t help but just love every minute of it.

I really do enjoy this time of year. I love the long nights, the quiet that comes after the storms, the weight of winter clothes, and the slower pace to everything. I thrive during the winter, when I feel like I can finally catch up with myself. And I literally feel at my physical best when I’m outside shoveling snow in sub-freezing temperatures. My body feels the most comfortable when it’s below 20 Fahrenheit  (-30 Celsius). My inner heater seems to kick in only at that temperature. And when it’s below zero (Fahrenheit), I really feel great. I don’t even feel the cold that intensely, when it’s that cold. I feel it more, when it’s around freezing. Then, it feels like it’s getting in my bones and shutting me down.

So, this coming week should be wonderful — it’s going to be in single digits for several days, and below zero at night.

Yeah, I love this time of year. But the whole Christmas season messes things up. Too many lights. Too much music. Too much shopping. Too many people. And interactions with strangers. Noise. Lots of noise, interspersed with sounds that I’m supposed to pay attention to. Movement. Unpredictable people not paying attention when they’re driving. Everybody with emotional issues. Money issues. Let loose in the world and insisting on talking to me. Ugh. I’m so glad it’s nearly over. I really just want to enjoy myself. Have nice meals. Get grounded. Chill out.

All this means I’ve got to make some changes. My partner and I agree that next year’s going to be structured very differently than this one (and years past). We’re going to do more advance preparation, buying presents ahead of time, getting better prepared, mailing things out weeks before we need to. Just being more mindful, early on, so we can really enjoy ourselves when the season “hits”.

Doing a lot of advance prep always seemed … wrong … to me in the past.  I didn’t want to think about Christmas, till it was right “on top of us”. I couldn’t get into the spirit ahead of time. But the older I get, and the more I appreciate the season, the more sense it makes. I can get the obligations out of the way up front. Put in the time and energy up front, so I can relax at a later point.

Doing it all at once may be in the spirit of the season, but that’s just not working for me anymore.

So, it’s time for a little change — a big change, in fact. And because both my partner and I are of like mind about this and can support each other, this is one change for the better that’s likely to “stick”.

It’s all for the sake of getting to really enjoy this time of year. That’s important.

And with that, I shall get into my day and enjoy this Christmas for what it is — another stage in the turning of the wheel that takes us ever on.

Merry Christmas, everyone.  I hope you have a good one.


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Last-minute Christmas shopping – I gotta do what I gotta do

big box store interior
Sometimes, it’s just unavoidable.

Ouch. We had a bunch of freezing rain, yesterday, which kept me inside… then drew me outside to break up the veritable ice-skating rink on my deck, stairs, and driveway… then knocked out the power for a few hours, last night.

Now the Christmas turkey I’d been thawing is “iffy”, and I don’t dare cook it up. The inside of the refrigerator probably stayed pretty cool, the whole time we were without power, but I don’t want to take any chances. I just don’t want to spend Christmas day sick — and neither does my partner, who’s even more sensitive to food stuff than I am.

So, it’s time to shift and adjust… make the most of my situation and count my blessings. Because I really do have a lot to be grateful for. That thought has to carry me through, because I have a full day ahead of me, this Christmas Eve.

I need to food shop. I need to visit some local stores to find some nice things for my partner. My go-to store was closed the other day, when spent the afternoon shopping. I made the best of it, but I still have to get some more presents for my partner. I’m not looking forward to wading into the stores, but it’s gotta get done. Nobody else is going to do it for me.

This year it’s so weird — I thought for sure that I had gotten her a bunch of things, but it turns out, I didn’t. She (in typical style) has gotten me a bunch of things. I ask her not to, every single year, because A) I really don’t need them, as I’m trying to simplify my life and actually have less stuff, and B) it’s a setup for a reciprocity nightmare. She expects the same level of “gifting” from me, as she provides to me, and it’s a set-up for failure. I’ve ended up melting down more Christmas mornings than I care to think about, because of the pressure — and my inevitable failure. I try and try, and I think I get it right… but then I don’t. And it’s crushing. For her, for me, for the whole experience.

Ah, well. That’s just one of those things.

At least I have today to redeem myself.

And so I shall. I’ll map out my route, find stores along the way that are bound to have what I’m looking for, and I’ll be thoughtful about it. Part of the problem with shopping before, was that I had to take care of both myself and my partner. She’s got mobility issues, as well as some cognitive issues, and when she’s left to her own devices, unfortunate things happen — like her losing the lenses from her glasses and not even realizing it till much later… like losing a glove… misplacing her wallet… slipping on ice… forgetting something… getting hurt. I have to be on high alert — especially when we’re out in public where everyone is shopping and milling around. It’s already demanding for me, and I’m stretched to my max. But I have to stay on point for her, as well. Because that’s how I roll. I need to take care of her, as well as myself.

Today, though, it’s just me. I can move at my own pace (which is much faster than hers), and I can get some stuff done. I’ll chart my course, figure out where to go and when to go there, I’ll choreograph it down to the quarter-hour, and I’ll just git ‘er done. Then I can come home, put up the food, and relax. Chill. Take care of myself. Take a nap. Wrap presents. Just get into the Christmas spirit in my own absolutely autistic way.

See, that’s the thing — when I’m allowed to do things in my own way, and I can leverage my strengths, things can go great. But when I have to accommodate others and go at another person’s pace in the non-autistic world, it’s really challenging for me. It’s good practice to accommodate and help others who need it, and it’s good practice for me to interact with the non-autistic world — sort of like a martial art — so it’s been very beneficial to my character. But there are times when I just need to go off by my autistic self and get stuff done in my own special autistic way.

Got my list, and I’m checking it twice. The year’s been full of naughty and nice behaviors, but all is forgiven for the next week or so. Then the wheel of the year stops turning, Yule sets in, and I can settle in, as well.

I’m sure next year will have lots to keep me occupied. But right now, today is what matters most.


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Settling into December

path across field and through village to Alps

This is how I’m feeling, right now. I’m actually in a very good space, after having  been incredibly busy for the past few days. I’ve got things some important things sorted out — and that’s taken a lot of pressure off me. Sweet.

I’ve got my back yard all raked and mostly free of leaves. My front yard just needs to be raked, but I’ll be able to do that in another hour or so, when the sun is up and I can see what I’m doing. I got my car inspected yesterday. And I’ve made up my mind about a conundrum that’s been dogging me for several weeks, now.

The biggest “win” was changing my annual physical from next Monday afternoon to this Friday morning. I need to get certain measurements taken, so I can get a discount on my health insurance. U.S. insurers are all into “helping” us manage our healthcare, which really means they’re funneling us down a path that they’ll pay for, and that they approve of (saints preserve us). I can save $700 a year, if I record my blood pressure, blood glucose, waist measurement, and a handful of other biometrics… do a health review and identify some steps I can take to improve with the company’s on-site health and fitness consultant. It’s tiresome and feels intrusive, and I object to it on principle. But … $700. You know?

Fortunately, I’ve managed to keep my most serious ills out of the official system. Nobody believed me, anyway, when I told them how much pain I was in, for so many years. Nobody believed me about a range of other health issues I’ve had. It made it much harder for me to manage my situation, but it also forced me to improvise and come up with genuine, lasting changes that have solved many of the issues at the root.

No doctor could have — or would have — gone down the routes I’ve taken. And even the ones who helped me, here and there, often doubted my approach. Until they saw it actually worked — and better than what they’d suggested. Ha.

Anyway, switching my appointment from Monday afternoon to Friday is a Really Big Deal for me. I have the day off work on Friday, and my appointment is at 10:30 a.m., so doing the fasting thing for my blood test won’t be a problem. And I won’t have to take time off work and deal with rush hour traffic, so that relieves another couple of huge stressors. Yeah, this is pretty big for me, even though other people wouldn’t think it was such a huge deal. But It Is!!! And I’m so happy and relieved that it worked out.

This month, I have every Friday off work, as well as the Thursday before Christmas. Then I have the week off between Christmas and New Years. This is the first year I’ve ever had this, and it is really wonderful. It takes the pressure off in a big way, and that’s good, because I have a bunch of stuff I need to take care of — get some bodywork done on one of the cars, and then get it inspected. Christmas shopping. Coming up with gifts I actually want for myself, so I can tell my partner. Cleaning my study, which has become a storage area for all the reading materials I’ve been meaning to read. Catching up with my reading. Catching up on my exercise. Catching up on my sleep. Catching up with my writing. Catching up, period.

It’s amazing what a little time off will do. This full-time working stuff is not for me, to be quite honest. But here I am… until further notice.

Anyway, this is a month for me to settle in and prepare for the New Year. I have Stuff I Want To Accomplish, and it looks like it’s actually going to get done. That makes me very happy. Very happy, indeed.

Now, off I go on another “leg” of my trek to the far metaphorical mountains, where my destiny awaits.

Systems are gonna save my a$$ today

interlocking cubes
Oh, my heavens, do I feel terrible today!

I had a really busy weekend, starting with an autism conference where Temple Grandin was the keynote speaker, and there were three workshops (and lunch and coffee and water and snacks). It was great hearing Dr. Grandin speak in person, and I really appreciated a lot that she had to say — especially about the importance of getting autistic kids working when they’re young, say at 11 years of age.

I know I was always “worked” as a kid — in my family, you pitched in and did your part with the gardening, weeding, yard work, and so forth. And that translated to doing yardwork for neighbors and doing a paper route when I was 12. I have worked since I was 12, really, holding down a long series of part-time jobs when I was in school, and then seamlessly transferring to full-time work after I left (er, dropped out after 4 interminable, traumatic years of) college.

It was just done that way, when I was growing up. You just worked. Everybody worked. It was non-negotiable. So, hearing parents now talk about how their kids aren’t able to get jobs… I just don’t know how that happens.

Anyway, after that, I went to a workshop talking about research done on the “invisible generation” of autistic folks — late-diagnosed individuals over the age of 50, who have spent their/our lives pretty confused and confounded and often disadvantaged because of dealing with that whole autistic business in a world that frankly just doesn’t give a sh*t about understanding us, let alone accommodating our “variations”. I almost broke down in tears a couple of times when the researchers were presenting their findings. I was in a room full of people, of course, so I didn’t. But I came close. Especially when they were reading the commentary.

The overarching thought that came out of that session was:

Nobody understands just how brutal life has been to some of us.

Nor do they really get just how strong we truly are.

Or how fortunate they are, that so many of us have learned to overcome what they’ve thrown at us.

It’s their loss that they don’t know… but we’re the ones who pay the price.

Sheesh. People really suck, sometimes.

Well, anyway, after that, it was time for lunch, and surprisingly, we were all herded into a large room with two long tables full of sandwiches for us to choose from. I prefer gluten-free, and I’d marked that on my registration form, but apparently, they didn’t accommodate that. The way the form was presented, it looked like I’d have a choice of specific lunches. But everybody was all just thrown together — three mini-sandwich options, a bag of chips, and a cookie.

😦

For someone who’s trying to avoid gluten and processed sugar and processed foods, in general, it wasn’t a peak experience.

After that, my experience got a little worse. I attended a workshop on employment, and the speaker was a “transition specialist” for autistic folks in high school (and college?). She was all about the Disability of Autism, deficits in Theory of Mind (if you read this blog much, you probably know what I think of that), and pointing out “inexplicable” responses by young autistic adults to her directions.

I found it a little insulting, to be honest. Fortunately/unfortunately, my processing speed was slower after that lunch (plus, I was really tired from working full-time for the four days prior), so my outrage wasn’t very well-defined or articulate. I considered approaching her afterwards and introducing myself as an autistic woman who’s been fully employed since 1988, but there was a line. And she had a really bad cold. I wasn’t taking any chances getting sick from her, especially since she seemed pretty set in her ideas and there probably wasn’t any chance I’d make a difference in that moment.

Maybe I’ll send her an email.

Or not.

The last session I attended was “Understanding Gender Identity and Sexual Orientation as it Overlaps with Autism: A Strengths Based Approach”, but it turned out to be about being trans and autistic and what kinds of issues autistic trans folks face everyday. In terms of being awareness-raising and informative, I give it an A+. The problem is, it wasn’t what the program said it was about, and by the end of the day, I literally couldn’t switch gears and adjust to the disconnect between my expectations and the reality of the situation. So, I felt like there was a void left that I really regretted.

It surprised me a little that the autistic folks who were presenting would change up the structure and nature of their talk. They’re clearly on a different part of the spectrum than I, when it comes to that stuff. If I were doing the talk, I’d hew to the line so literally… But that’s me.

Saturday was full. Yeah. Then I had to do some chores at home and go out and pick up supper. I got in bed early and slept like a rock for nearly 10 hours, which was a rare treat.

Sunday was a jam-packed sprint, as I tried to catch up on everything I’d not been able to do the day before. Getting my job-search stuff together. Coordinating other projects I’m working on. A whole lot of yard work. Plus, taking down old Christmas lights and putting up new ones. Getting the ornaments out… heck, just finding where the ornaments were, to begin with… Getting the outside tree situated…

We’ve had our Christmas tree outside every year, since a few years ago, because of sensory sensitivities. Ironically, it’s my partner, not me, who’s sensitive to the smell of the tree. She can’t handle it. And I get it. So, I set up the tree on the deck, where we can see it from the kitchen while we’re cooking and washing up. It’s nice there. I string lights on it, and it makes a nice colorful glow in the dark.

After that last rush, I made us some late brunch, and then we watched football all evening. Our interests in t.v. have really diverged over the past years, and football or other sports are about the only things we can watch together without annoying one of us. It works.

So, anyway… systems.

That’s what I was going to write about.

As a result of all that excitement over the weekend, I’m pretty much shot, today. Fried. Shaky and hypersensitive. All my sensory stuff is whacked out, and while my eyesight and hearing is ever so keen, and my tactile defensiveness is really up there, I still feel like I’m floating in an electric bubble, with all my movements feeling like they’re 2 seconds behind my impulses. My body is numb and tingling, as it gets sometimes when I’ve been whacked out on adrenaline too long.  And I’m having a hell of a time typing. It feels surreal. (did I say that before?) like I’m enveloped in a thick blanket of goo that’s slowing me down, but amplifying my every sensation at the same time.

Not that I can accommodate my own limitations today. I have to get my car inspected. Its sticker is 4 days overdue, and I can’t afford the ticket. I have to get my work done, which involves a lot of data analysis and thinking really hard. I have to change my doctor’s appointment to early in the morning so I can get my blood glucose tested while fasting, so I can get a discount on my health insurance. And I have to prepare for a presentation I’m doing tonight. It’s gonna be a long day, and not being able to type is a real problem.

But I have my systems to keep me going, keep me on track, and make sure I’m getting everything done. I have my email, my calendar, my reminders, and my checklists. I have my to-do priorities, and I have my pace pretty well figured out. All I have to do now, is follow my own plan. If I can do that, I’ll be fine.

Put myself on autopilot, keep myself hydrated, keep going, and hope for the best.

Thank heavens for my systems.

#WomenInSTEM – #POC in High Tech – July, 2018 is the time to find a new job in Massachusetts

red glass and metal skyscraperIf you’re like me (not a white, heterosexual male, but still working in high tech in Massachusetts), you’ve probably been on the receiving end of a subtle form of discrimination that’s systemically ensured that a lot of us can’t get paid the same as white men with the same amount of experience and qualifications.

That discrimination is the standard-issue question, “So, what are you earning in your current position?”

It might not seem so horrible, but if you consider that a lot of minority folks start out at lower rates of earning, then over all the years of moving on, if we’ve been compensated at roughly the same rate we were before, we’ll inevitably end up making less than our majority counterparts — some of us significantly less. I know that Salary.com shows I’m making 15-20% less than my market value, and that burns. But up till now, I haven’t been able to do anything about it, because employers have always copped out by using my prior earnings as a reference point.

But that’s about to change — well, in another 7 months.

AN ACT TO ESTABLISH PAY EQUITY goes into effect in the Commonwealth of Massachusetts on July 1, 2018.

This law is supposed to even the playing field, in terms of compensation. The part(s) of it I like the most are:

   (c)  It shall be an unlawful practice for an employer to:
     (1)  require, as a condition of employment, that an employee refrain from inquiring about, discussing or disclosing information about either the employee’s own wages, or about any other employee’s wages.  Nothing in this subsection shall obligate an employer to disclose an employee’s wages to another employee or a third party;
     (2)   seek the wage or salary history of a prospective employee from the prospective employee or a current or former employer or to require that a prospective employee’s prior wage or salary history meet certain criteria; provided, however, that:  (i) if a prospective employee has voluntarily disclosed such information, a prospective employer may confirm prior wages or salary or permit a prospective employee to confirm prior wages or salary; and (ii) a prospective employer may seek or confirm a prospective employee’s wage or salary history after an offer of employment with compensation has been negotiated and made to the prospective employee;

That means, I can ask what potential employers are paying others who do my same job. And they aren’t allowed to ask me what I was making before.

So, that means I’ll be free to change jobs next year, without worrying that I’ll be blocked in by my past. It’s been a rigged game against me and others like me for far too long, and now that’s changing.

Who knows how much it will fix, but in any case, at least that’s one less thing I need to contend with. Being a 50-something high tech veteran is challenging enough in this youth-loving world. I can use all the help I can get. Plus, it will be nice to get paid the market rate.

For once.

The #autistic feel of the words

paper with quill pen and inkwellI’ve been immersed in an intense and overdue writing project for the past week, and it’s been eye-opening looking at passages I wrote months ago, but didn’t get a chance to re-read until recently. It’s been tough going. What I thought would be a pretty straightforward exercise is taking me 2-3 times as long to get done. But at least I’m making progress.

I’ve noticed something really interesting about my writing, that’s only come into focus over the past year, since I got formal confirmation that I’m on the autism spectrum.

Namely, that I’m way more repetitive, even palilalic, than I realize.

And I do it in writing, as much as I do it in spoken words.

Palilalia is apparently a “sibling” of echolalia (which is where you repeat back words from other people (or movies or other quotes). Palilalia is where you repeat yourself.

According to Wikipedia (sans the “disorder” language):

Palilalia (from the Greek πάλιν (pálin) meaning “again” and λαλιά (laliá) meaning “speech” or “to talk”),[1] . . . is . . . characterized by the involuntary repetition of syllables, words, or phrases. It has features resembling other complex tics such as echolalia or coprolalia, but, unlike other aphasias, palilalia is based upon contextually correct speech.[2]

It was originally described by Alexandre-Achille Souques in a patient with stroke that resulted in left-side hemiplegia,[3] although a condition described as auto-echolalia in 1899 by Édouard Brissaud may have been the same condition.[1]

Apparently, Messrs Souques and Brissaud didn’t have much contact with #ActuallyAutistic folks like me, or they might have encountered it sooner. And not only in stroke survivors. Which might have helped avoid the pathologizing tendency (one can hope, anyway).

I am very, very, very palilalic. I repeat myself. A lot. And as I’m editing my work, I’m finding lots of sentences — even whole passages — that are basically repetitions of what I’ve said before, in different words. I do it so much, I sometimes literally remove every other sentence, and end up with a paragraph that says what I meant to say, to begin with — just in more succinct terms. While falling asleep the other night, it occurred to me that I could write a script to remove every other sentence from the book, and it would read much better.

Automated editing. But I have to suppress the urge to do more “hobby programming” until I actually finish this piece. It’s gone on for far too long.

Anyway, back to my palilalia. That’s my new word for the day, and I want to better understand the mechanisms of it. It’s like I tap into a concept, and that delights me. I have a visceral experience of the idea — an actual physical sensation. A form of synesthesia, perhaps? It’s like I’ve found a sweet-spot of sensed meaning. And in my joy and delight, I need to explore that concept from every . possible . angle, to make sure I’ve explored the full spectrum of the concept. I want to dwell in it… really let it sink in… and bring it home. And I also want to share it with others.


Sidebar

Please Note: I’m Autistic. Way Autistic. And contrary to the popularized definitions of Autism, I do want to share. I do want to reach out to others. I do crave a kind of connection with people outside my immediate circle of me-myself-I. So, let’s just get rid of the idea that Autism is about not wanting / needing to share. I do. We do. It’s just that others aren’t particularly interested in going the extra mile to make room for my Autistic ways.


Of course, my delight in having a sense, an experience of a concept isn’t necessarily shared by my readers. Maybe the Autistic ones… but certainly not the neurotypical ones. Non-autistics seem surprisingly happy to leave many, many conceptual “blanks” in their communication, sacrificing accuracy and thoroughness for speed. Non-Autistic exchanges generally feel like a frenzied experience of Let’s just get to the next idea, shall we? Never mind that nobody understands what’s really being said. 

Of course, there’s nothing I can do change the sensibilities of others. People tend to be generally fine with their own ways of perceiving things (heaven help us), so it’s up to me to speak to them in a way that makes sense to them, as well as what expresses my ideas. It’s deeply frustrating, because I want to convey what I’m experiencing, and I want to do it fully. Thoroughly. Intensively. Using different words to say just slightly different things about the same thing, so there’s a comprehensive representation of what I’m not only thinking, but also feeling.

I want my readers to have as much delight as I do.

But that’s not going to happen the way I want it to. Because not everybody is palilalic. And a lot of readers don’t get the nuances between different words. Truth be told, I need to be careful about using all those different words, because sometimes I have a completely different understanding of what a word means. I learned a lot of my vocabulary from books, when I was growing up, and I frequently mixed up meanings I derived by contextual inference, rather than explicit instruction. But I still used the words, anyway. And I still do. So, sometimes I have the wrong meaning. But it feels right, so I go ahead and use it — to the detriment of my writing.

Yeah, I have to be pretty careful about my writing and editing. And realizing just how palilalic I am, how good repetition feels to me, how intent I am on exploring all the facets and vagaries of concepts… it gives me a much-needed pause. It makes me a better writer.

Still, I have to wonder… is there in fact an Autistic way of writing? Do we have our own styles? Our own syntax? Our own pacing? I wonder… Just like people who speak certain languages may write a certain way in other languages, maybe Autistic folks have a “language” all or own, which then shades how we express ourselves in the written word.

It’s an idea.

But enough rhapsodizing. Gotta get back to work. And cull all that repetition. It’s the kind thing to do for my intended audience.

When non-verbal == strength, it’s time to be non-verbal

red and blue dots connected by meandering lines on a field of red and blue static
My process looks confusing to others, but I get where I’m going – in my own way

So, my Major Deadline has passed. It went off pretty much without a hitch.

Just in time for Thanksgiving. I’ve got some time off, next week, but I’ll probably check in on my project to see how it’s going, now that it’s “live”.

It’s been pretty brutal, overall. Really, really taxing. And it’s taken just about a year to get this “15-week” (Hahahahahaha!) project ready for prime-time.

Now it’s out there, and it’s time to step back, think through all the lessons of the past year, and figure out the next steps. Because this sh*t isn’t going to stop. I’ve got another phase of this project just around the corner in less than 2 months’ time. So, get a little rest, and get back into it.

One of the BIG lessons of this has been seeing just how non-verbal I am, when I am in problem-solving mode. Make no mistake, I’ve been mostly in problem-solving mode for the past year. So, I’ve been mostly visual-spatial. Which means I haven’t been thinking well in words — or the times when I’ve had to think in words (and talk), I’ve been at a disadvantage. And the talking has cut into my non-verbal problem-solving.

I’ve known I’m a visual / non-verbal thinker (this blog nothwithstanding) for many years. And I’ve known for just as long that having to switch my mode between words and pictures is a problem and makes both sides more difficult. But not until this past year (or two) have I really seen so clearly just how much of a problem this can be.

In my job, I have to communicate to people.

But communicating just doesn’t happen, when I’m in non-verbal mode. So, I don’t do my full job. And it works against me and the people I work with.

Huh. If I had more energy, I’d dig into this more, but the bottom line is, I need to figure out how to meet the requirements of verbalizing, even while I’m in heavy-duty non-verbal mode. Because the job requires it. And it’s not that I don’t like to do it, or that I can’t do it. It’s just that I need to find a better balance between doing it… and not.

Well, that’s a line of thought for another day. After I’ve caught up with myself and have the time and space to really think it through.

I’ve had a lot of important (for me) insights, over the past weeks, just haven’t had time to note them all down and expand on them. I’ll get to it. Just not yet.

Watch this space, though.

Watch this space.