Raised #Autistic – Lessons Learned

books hanging from bookstrapAll the talk about how Autism diagnoses have skyrocketed in the last 30 years, overlooks one key factor:

Once upon a time, the Autism Spectrum wasn’t pathologized. It was developed.

It was very much a part of life, and there were institutions and mitigators in place to help weave that neurotype into the overall fabric of life.

I was raised in an area that’s chock-full of Autistic folks. Is this abnormal? Not on your life. In fact, it’s the norm. And every aspect of growing up is/was geared towards training individuals how to be responsible members of the community. It helps that it’s a rural area, where everybody has to pitch in, no matter what, so nobody gets a pass to completely drop out of society because of any difficulties they may have. Society needs them, it’s made clear. And whatever they can do — in whatever measure — is not only needed, but required.

Take my aunt, for example. She just passed away last year, and she was probably one of the most “obviously” Autistic persons I’ve ever met. All the classic behaviors, all the classic traits… that was Aunt M. She definitely did not have an easy life, but she lived by a code that placed others first at all times. She had a quote on her dresser that effectively said, “Whatever sufferings I may have, others have it even worse. And in the end, the question is not how much I’ve gotten out of life, but what I’ve given to those who are struggling more than I.

That’s the ethos I was raised with overall, and I can tell you that Aunt M personified that, each and every day. She had her challenges, of course. My mom had to constantly watch out for her, from the time they were both young girls, till the day she died. She was bullied, she was threatened, she was abandoned. And she had intense issues with anxiety and social interactions.

But she lived her life. She lived by principles. And in the end, he had such an important place in life, her funeral was attended by close to 100 people, many of whom relied on her for many things throughout the course of her life.

I was raised in the same way — principles. Be a responsible member of society. Put others first. Realize that others have troubles, too, and rather than thinking about what I need to get out of the social equation, I need to put myself out there and be as helpful to others as I can. It’s not about me. Yes, I have intense suffering and challenges at times. Yes, my life is a non-stop parade of pains and joys — often so intermingled, it’s hard to tell which is which. But in the end, what I contribute to the world is far more important than what accommodations I get to secure my own happiness.

Now, you might dismiss this as being some lofty approach by someone who’s not impacted all that heavily by Autism. But you’d be wrong about that. Everything I have, everything I can do, it’s all been hard-won and paid-for at a steep price. And I’ve been around long enough to realize what a toll it’s taken on me, over the years.

Does that toll matter? Nope. The bottom line, for me, is what I add to the overall human equation. I’m responsible for my corner of the universe. I have to keep it clean and orderly and do my best to not be a liability towards others. I have to keep my own suffering out of view, because what I have to give is far more important than anything I feel I need to take.

All those years, when I was in excruciating chronic pain and some days couldn’t get out of the bed… the short time I was homeless… the times when I’ve had to quit jobs and move on, because the environment was so painful I couldn’t tolerate it anymore… Through all the meltdowns, the shutdowns, the touch-is-pain moments… The one thing that kept me going was that it wasn’t only about me. I had to get up and go to work to support my household. And if I couldn’t manage a full-time job, then I had to find a regular source of income that let me work part-time and still make enough to pay my rent.

The thing that carried me through all those years of intensity and hardship, was my upbringing by parents, grandparents, and a wider community who were all Autistic. Who knew what it meant to struggle, and who still pressed on and pushed me to deal. They didn’t let me off the hook. They kept at me, and kept reminding me of what was Right, what was Wrong, and urged me to do the Right thing. Even when it was impossible, they still demanded that I do my best. No excuses. Just get on with it. Yes, life is painful and awkward, but that’s what teaching and training were all about. I had to learn. I had to be taught. I had to be raised.

There was never the assumption that kids already inherently knew the right thing to do. There was the assumption that adult life is challenging and requires skill, and like any skilled endeavor, that takes training and practice and continuous discipline. The skills I have now, which have allowed me to live a really full life and experience so much that many people only dream about, they didn’t magically emerge from my pristine primal state. They were abilities that were identified, prioritized, and emphasized as the sort of thing that all adults do.

And there was no argument.

Yes, it was tough. Yes, it was challenging. Yes, I still have leftover “stuff” from all those years of training. I was enculturated into an Autistic society, and there were Rules and Regulations for everything. It was rough, at the time, but all the hard lessons have made it possible for me to live my life… regardless.

The skills I developed at just getting on with things, for putting others first, for making the effort to be a contributing member of society — even when I was disabled — made all the difference in the world. Society has a way of looking out for those who support it and contribute, and that’s always been my “safety net”, if I even have one. I make myself useful to others. I contribute. I’m not perfect, I’m pretty weird at times, I’m Autistic, I can be pretty off-putting at times. But in the end, my goal is to make myself an asset to the world around me, not only devote myself to getting my needs accommodated.

That’s all because I was raised by Autistic folks. Those were the Rules.

’nuff said.

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My #Autistic Social Advantage

Picture of ground half covered with snowThe snow is finally melting, in my corner of the world. It’s warm today, 50°F and 10°C, and it’s raining a little bit. Mist is rising up from the snowbanks as they melt and evaporate. The process always fascinates me, because it seems like it should take more energy or more heat to turn water into steam. And yet, here we are, surrounded by fog.

I’m so glad it’s Friday. It has been a really long week, and everybody I talk to at work feels the same way. We are all very happy the work week is nearly over, and since this is Easter weekend, a lot of people have even more time off. So, that’s good. Things should be pretty quiet today, especially this afternoon, so that means I can concentrate on my work without distraction. I might even get into my zone, if all goes well.

I’ve been thinking about how being autistic has helped me over the years. With Autism Awareness Week, the theme seems to be, how many people have been left behind and are not being helped as they struggle through life. I’ve had plenty of struggles, myself, and being denied a diagnosis for years really complicated things in my mind. However, objectively speaking, Autism has also been a huge advantage for me. And not necessarily in ways you would expect.

One of the biggest and most helpful ways, is how it makes me pretty much oblivious to what other people think of me. Now, in some cases, that is a real drawback. It doesn’t help me when I am in touchy social situations where I need to read people properly to get by. It also didn’t help when I was growing up and all the other kids were sending out magical signals about what they did and did not like, what they would and would not tolerate. I was persona non Grata a bunch of times throughout my childhood, and that really hurt.

On the other hand, now that I look back, I see that being on the outside didn’t actually stunt me the way you might think. It didn’t ruin my ability to bounce back, didn’t keep me from becoming resilient. In fact, being on the outside taught me many important lessons, and it really became an advantage for me. Because those experiences taught me how it feels to be on the outside, which I would never want to make another person feel. It made me a lot more sensitive to differences in the want more excepting of limitations, all of which have helped me connect better with the world around me.

Plus, I was really, truly happy being by myself, and I took so much obvious pleasure in the things I was interested in, and I devised a way of life that worked for me, so other people were intrigued, and they actually responded favorably to me after a while.

In fact, over the years, my outsider status has often worked in my favor. I have been outside the “in group” More than I have been on the inside, but because I’m actually fine with it and I seem happy and content and fulfilled in it, it piques the interest of others who want to enjoy life the way I do. They see me enjoying myself, being happy, being content, and they want to know what all the excitement about. I will happily share what fascinates me, any old time, and one thing I seem to have learned from my autistic grandfather, is how to translate my passion into excitement for other people. So, my geeky nerdy obsessions with obscure stuff really truly helps bridge gaps between me and others. Anybody who’s looking for a little tidbit of trivia they can use to impress people a cocktail parties is welcome to ask me for my input. Invariably, I can find something they can use later to improve their social status.

Everybody wants to be happy, everybody wants to be accepted, everybody wants to feel like they belong. It never really mattered to me that I didn’t belong to certain groups, or that I was not the most popular kid in the class or at work or in town. What did matter to me, was that other people felt welcome, appreciated, even loved, when they were around me. I learned how to transfer my sensitivity about being left out along with my deep interest in life, other people, and how things work to the social scene around me. And because I was Autistic and could not read negative reactions from people, I found myself able to be open to others in ways that most people can’t.

I can’t emphasize enough how helpful this has been. Alexithymia, or the inability to sense emotions, has actually worked in my favor, in that I have defaulted to openness and acceptance, if I needed to fill in any blanks about what people thought about me. In fact, there have been many, many times when other people have approached me with anger, judgment, aggression, or other negative emotions, and because I could not sense them, I just assumed they were friendly, and I treated them as such.

The amazing thing is, those other people backed off their negativity and took my positive lead. They realized that I was not intimidated by them, I was not put off by their behavior, I was not going to fight with them or stir up more trouble, and I really just wanted to interact with them like decent human beings. Because I had a better and frankly more enjoyable solution to the dynamic, they followed my lead.

I sincerely doubt any of that would have been possible if I were neurotypical. If I were able to read the aggression the other people feel, if I were able to respond to their emotional state with a response like what they were putting out towards me, I’m sure my life would’ve become very different and taken many darker turns. But the fact of the matter is, people look for leaders, and they look for better solutions in life. And if you lead them in a way that steers them away from their bad behaviar, on an individual basis, In personal encounters, change can actually happen.

Of course, I can’t speak to systemic inequities, as well as racism, classism, bigotry, and all the other isms that drive modern human behavior. Those are larger, more complex issues that deserve a deeper discussion. But in my own personal life, I have found that Autism actually gives me an advantage when it comes to dealing with people. Provided that I take the lead and I set the tone, really positive changes can happen whenever I encounter people who could potentially be a problem.

It’s not for everybody, and not everybody has interest, or wants to develop the skill, but I can tell you that it works. I can also tell you, I didn’t learn how to do this overnight. I didn’t magically receive divine dispensation of this glorious secret. The set of skills was hard-won over many decades of trial and error. But right now, in my current life, it works for me.

And that’s plenty good for me and my life.

Refresh connection with Facebook? Hmmm…. maybe…

Message from WordPress to refresh connection with Facebook
This message comes up, every now and then, when I’m on WordPress.

Before you hit Publish, please refresh the following connection(s) to make sure we can Publicize your post:

And again, I need to consider whether I actually want to reconnect with Facebook.

I’ll admit, I’m reluctant. For all they’ve done (and not done) in the area of privacy and protecting their users, part of me just wants to drop them permanently and walk away.

Then again, I don’t really spend much time on FB, and it lets me get some of my writing out to a broader audience. So, it serves a purpose. It certainly does that. And I have so little actual personal information on there — nothing that I don’t already put on WordPress and Twitter — that whatever they may want to do with my info… good luck to them.

I think I may be Facebook-inoculated, because I’ve been in the high tech / online scene for so long. I worked in financial services for years, building websites to let people manage their money online, and I still, to this day, don’t think it’s a bright idea to do any of that stuff online. The fact that more people aren’t robbed… well, that surprises me daily. I’ve worked in online marketing, have built websites intended to be super-secure, and I know how the stuff is put together behind the scenes.

It’s never been nearly as secure as they say it is, and it’s always been a bit of a fools’ paradise (note the s-apostrophe, meaning all of us fools), so I’m not overly rocked by all this. Plus, it’s not like anyone didn’t already know Facebook’s “default mode is sharing”.

D’oh.

As in D’ohn’t come crying to me, when you finally realize that we weren’t just whistling in the wind about your life being up for grabs on social media.

Oh, is that mean-spirited? Non-compassionate? Maybe so. But seriously, it’s time to put the big-kids pants on and take responsibility for all this. Not just wail and gnash our teeth over crap we’ve been warned about, but chose to ignore.

Sigh.

Well, anyway, I’m having a lovely Sunday inside, looking out at the crows trying to unhook the suet cage from my bird feeder. They figured out how to get it off before, so I used a carabiner to hold that sucker in place. And since then, they haven’t been able to do more than perch on the top and peck at the suet. Frustrating for them, I know, but the woodpeckers thank me.

Yes, a lovely Sunday… I’ve got my fuzzy blanket thrown over my shoulders, and I’ve got my music on. Cozy, warm, and relaxing with some really wonderful reading I’ve been doing. An old, long-lasting interest of mine has cropped up again — iconoclastic Zen practitioners of the 16th and 17th centuries in Japan — and I’m digging into old Samurai stories with a gusto I haven’t felt in quite some time.

How pleasant. How incredibly pleasant.

And then, because I did so much yesterday and got a lot of errands out of the way, I can lie down and take a long nap this afternoon without needing to set an alarm. My favorite kind of nap — also good, because if I don’t set my alarm, then my mobile won’t be beside my bed, so I won’t spend an hour scrolling through Twitter, when I’m supposed to be resting.

I’m spending less and less time on social media, these days, including Twitter. It’s all turned into a cultural battleground, which is tiring. Seriously, they need better filters. I support the changes taking place, and I support the people standing up for their lives, but sometimes I just need a break, and social media has provided me with that in the past. Breaks are coming fewer and farther between, though, which is unfortunate.

Or is it? I need to unplug more, these days, anyway. I’ll just treat it as a great opportunity to chill and give all the fight-flight a rest.

Oh, you know what?

That got me to thinking… Maybe my decreasing ardor for Activist Twitter is due to my decreasing hormonal inclination to give a damn about stuff that used to drive me. Menopause seems to be cutting me a break.

That could explain a lot, actually.

But now it’s time to retire again to my cave-y little corner of the world, ensconce myself in a heady enclave of histories, myths, legends, and conjecture about what was going through people’s minds, on the other side of the world, 400 years ago.

Fun!

Catch you later.

Maybe on Facebook 😉

How much has #television contributed to the #Autism panic?

television

I’ve been thinking a lot, lately, about how … abruptly Autism has seemed to have emerged on the public scene. So many people getting diagnosed, supposedly in “epidemic” proportions. “Autism wasn’t a problem when I was growing up,” people say… “It must be something new — vaccinations, environmental toxins, gut health, gluten, and more.”

I’m not going down those particular ratholes, because I think there’s another factor that’s really contributing, not only to the number of people who are getting diagnosed, but in the distress that we’re experiencing because we’re Autistic.

I think it has a little bit to do with the surge in pathologization (if that’s a word) of behaviors that have been around since the beginning of time. There have always been folks like is in the general population. But society’s acceptance of our traits has dramatically decreased, over the past 40 years. And that, I believe, contributes far more to the issues and challenges we experience, than any of the commonly blamed “causes”.

Society has never been super-accepting of outliers. My ancestors fled their homes many times over many generations, as a result of local people not wanting them there. For over 1000 years, they routinely had to move along to some other locale, because people didn’t like their language, their culture, their religion, their ways. Back and forth across Europe they went, chased from one country to another, because they just didn’t fit.

So, the human race has never been strong on the whole acceptance bit.

But now… I’ve noticed a massive shift in people’s acceptance levels of traits that I grew up with, which were never seen as liabilities in the place/family of my origin, which were simply seen as differences that gave you certain strengths, where others were weak — and vice versa. It’s not just Autism traits, either — flapping, talking fast and long about fascinating subjects, being sensitive to foods, needing to stim — it’s everywhere.

When I got into high tech, 25 years ago, I was an outlier. There weren’t many women on the technical side of the house, but people made room for me. I earned my place, weirdo that I was (and yes, I am a weirdo, and proud of it!). And there wasn’t the raging sexism that I see in high tech, now.

And I think television has had a hugely influential role in all of this. Because we’ve been inundated with all the messages, for countless hours, on countless channels, about how men and women are supposed to look and behave… for how “normal” people are supposed to look and behave. Television has provided a bland, one-dimensional template for everyone to abide by, creating emotional bonds between audiences and invented characters which are the product of a media industry that’s almost mind-bogglingly homogenous. Writers of color, Autistic writers, disabled creators, people who don’t fit in the mainstream, don’t have great representation there.

And it shows.

Personally, I have to wonder how much television people who freak out over the “Autism epidemic” actually watch. The folks who “light it up blue” and support A$… how many hours have they spent in front of the glowing box (or eyes glued to a device), internalizing all the subtle, one-dimensional messages about what it means to be a human being, and how we should behave? People who cringe at the different ways people present and identify, gender-wise… who squirm at speech patterns and behaviors that don’t match what they think are right… how many of them have had their social expectations set by all the t.v. characters they connect with each day and each night?

I have to wonder.

And I have to admit, I really despair, when I see what kinds of characters are on t.v., as well as in movies. For the sake of drama and an unfolding story, embarrassingly immature people are trotted out for our “entertainment”, their foolishness normalized, their vacuity standardized, their shallowness presented regularly as “how people really are”. It’s depressing. And when you toss in the music and laugh tracks and subtle ways creators and producers use to entice viewers and hold their attention… Ugh… even more depressing.

Over the past years, I’ve been watching less and less television. I watch a few shows regularly, but mostly I watch movies (which are slightly better, but also have their shortcomings). And the more time I spend away from it, the more tolerant I find I am. That includes tolerance for myself. I’m not as intensely sensitized to the ways I differ from others (of course, menopause helps, because I’m no longer hormonally inclined to give a damn what others think). I’m more tolerant of others, as well. Differences don’t bother me, the way they used to — and the way they bother others.

Because my templates for acceptable human behavior haven’t been defined by a handful of white, middle-class collaborators who live in their own little bubble and work behind closed doors.

And I have to wonder, if more people just didn’t watch t.v. and let it tell them what it means to be human, how much more human could we actually become — and allow others to be?

“Say what?”

hand near ear with vibration

Well, this is interesting… I’m realizing more and more, just how much my hearing difficulties have affected my day-to-day life, interactions with people, my willingness to engage with others, socialize, try things, and get an education.

I mean, yeah, my overall sensory issues have had a really … dampening… effect on me. Experiencing light touch as pain can be a source of constant distress. Balance issues put me in a constant state of hypervigilance, when I’m “off”. Light and sounds can be painful, too. There’s a reason I go food shopping every day — so I only have to be in the store for 10 minutes at a time (and yes, it works!). All of that can add up over time to a pretty significant trauma load. Even the little traumas, if they aren’t cleared out of my overtaxed system, build up to something bigger and badder than the individual elements, themselves.

And then there’s my hearing. Such as it is. Most of what I hear, if I’m not listening intentionally, is a muffled mmmmmfffftgrrrrlllllnnnnb. And yes, it is maddening for people who deal with me to have to repeat . themselves . every  . single . time . they . say . something . to . me . unannounced. I really feel for them. Because sometimes you just want to feel like you’re being heard, without having to repeat yourself every . single . time.

But what can I do? Unless I’m paying attention to what someone is saying to me, I don’t pick it up. I just don’t.

And it’s getting to be more and more of a pain in the neck. As time has passed and the high tech industry has evolved, I’m finding myself in more and more “leadership” positions, where I’m directing a bunch of lower-paid folks (often on the other side of the world). I’m also responsible for communicating progress to higher-ups. And yes, this is a massive pain in my hind-parts, because those are the least-capable parts of me — phone calls with people who have thick accents over bad internet connections… distilling all the details of the past week in can-do Powerpoints that press all the right “comfort buttons” in hyper-controlling people at a higher pay grade than myself… Keeping lines of communication open with people of all types…

What did I do in a past life to earn this steady stream of demoralization and practically built-in failure?!

I ask you…

It really is kind of funny, if you think about it. Either that, or cruel. Good thing I’m post-menopausal and no longer hormonally inclined to fret about not getting everything right. Good thing I care a lot less about what other people think, and I’ve lived in my body/brain long enough to know not to trust all the terrible things I say about/to myself. They haven’t fired me yet, so I guess I’m doing okay. Plus, I’m ahead of the game, because even at my worst, I do a better job than a lot of non-Autistic folks do when at their best.

So, I’ve got that going for me.

The only problem is… I can’t hear for shit, sometimes. Seriously, I can’t. I don’t think it’s gotten worse for me than it was when I was younger. It’s just that now I have to talk to people a lot more. For something like 15 years, I was a developer, so I could just communicate with my computer and code. Not worry about the people stuff. And I wasn’t saying “How’s that? Can you repeat please?” every 1o minutes.

Ha! I should count how often I do that, these days. Might be eye (and ear) opening.

Anyway, I realize more and more, these days, just how much my hearing difficulties have affected my life. I avoid all kids of stuff because I might not hear properly, and I might A) make a fool of myself, B) get into trouble, or C) actually be in danger.  I can’t do work that involves other people and power equipment, because I might not hear a warning, and I might lose a finger… or an arm. That’s a bigger loss than I like to admit, because I love manual labor. And I would love to be able to support myself while working with power equipment. But at this point, I don’t think that’d be safe.

I also don’t go out much, because I might have to interact with people, and the only thing more lonely than being around people who aren’t trying to connect, is being around people who are trying to connect, but I have no idea what’s going on, because I can’t hear them properly. Sure, I can cue the canned greetings and response, but I’d really like to be able to do more than that. But people just don’t have the time. And when I keep asking them to repeat themselves, they seem to get tired of dealing with me.

I’ve been thinking about talking to my doctor about this. I probably should, because maybe there’s something to be done. I really worry about interactions with the police and other first responders, not to mention other authority figures. Having trouble hearing is a great way to get shot by the police, based on recent history, so yeah — in the interest of living a full life, I should probably look into this.

I just have to prepare properly. I think I’ll write up a description of my symptoms for my doctor, describe my difficulties, and ask her if there’s anything to be done. It might be nice to have some sort of assistive device that could block out all the ambient noise, so I can concentrate on what’s being said to me. The idea of wearing a hearing aid worries me, first because of the distracting feel, second because it can call me out as vulnerable and people might try to take advantage of me, thirdly because I really don’t want people to pity me and treat me differently.

But other people deal with that all the time, so maybe I should quit being so squeamish.

Anyway, that’s my latest “thing”. The hearing situation. Or inconsistent lack thereof. I’m going to learn a little bit of ASL, I think, because I’ve been wanting to do that for some time, now. It’s something to add to my overall skillset. I need skills. And I also need to widen my world a bit.

It’s all an adventure, isn’t it?

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.

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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