I’m not looking forward to this next week. Not in the least. I have a busy weekend, and then I fully expect the sh*t to hit the fan at work, next week, when we launch into all sorts of political squabbling and jockeying for position.
I get tired just thinking about it. But it’s pretty much a given that it’s going to be a rough week, so I’ll just have to prepare accordingly.
It’s just like dressing for the weather if I have to go to sea. If there’s a storm brewing on the horizon, I don’t throw myself down in a heap and wail and gnash my teeth. I get my raincoat and rain boots, I plan my route in the boat, and I go about my business, getting wet and cold and miserable in the process, but drying out later.
When you have to go to sea, you have to go to sea.
Same with this coming week. I know it’s going to be a rough ride, so — unequivocally — I need to:
Get my proper rest — nap when I can.
Eat well. No bingeing on carbs and sugar. Stick with the solid nutrition that keeps me going with good quality energy.
Get decent exercise and movement. I’m going to be sitting for long hours, hunched over my computer, so I need to get up and move around. Maybe even move the computer to a location where I can stand while I look at it. Yeah, I’ll do that.
I’ve been in a lot of pain, lately. I messed up my back a few years ago while moving snow, and I keep re-injuring it. It will get better for a while, then I’ll do something that screws it up again.
I have a whole protocol for getting it back in shape, involving
stretching different parts of my body,
drinking lots of water,
rolling on tennis balls, and
If I skimp on any of these, I have only myself to blame for my pain. And it’s strange, how quickly and easily I forget that. I can get so caught up in the pain that I forget. Until I don’t.
This coming week isn’t going to make things any easier, that’s for sure. Stress and non-stop work keep me locked up. So, I have to really push myself to get past it. Do what I can for myself, when I can. Be my own best friend. Is anybody else going to do it for me? Nope. I’ve gotta do it myself. So, I do.
Its time for my monthly routine — walking around the house, turning all of the calendars to the next month.
When we change our clocks, I adjust all the clocks in the house, first thing, before I do anything else. Same with calendars.
Every now and then, I’ll forget to turn a calendar over. Some rooms I forget about for months. Then I walk into the room in November, and the calendar says it’s still July. That’s such a strange feeling, especially when the picture on the calendar is a completely different season than what I can see through the window.
It’s a nice way to start the day / month. A quiet kind of welcome in a quiet house, before everything gets “exciting”.
And now… off I go to get my daily dose of excitement at the office. It’s not so bad. But I’d rather have the quiet.
Once a year, VoxVisual does the well-nigh impossible — she visits her overwhelming family and lives to tell the tale. Autistic since birth, she’s lived in a constant state of overwhelm for as long as she can remember.
“I’m not looking for pity,” she tells us, “but it’s not easy dealing with all the chaos — especially at holiday times. I have a large immediate and extended family, and they love to stir everything up. Yelling, singing, jumping around, talking about this-that-and-the-other-thing, switching subjects without warning… and never giving me a minute’s rest. It’s exhausting! And even though I love them and need to see my family at least once a year, I dread doing it — especially during the holidays.”
What to do? In someone else’s house, on someone else’s schedule, interacting with people she normally doesn’t interact with, how does she manage it?
“It’s taken me years,” VisualVox tells us, “but I’ve finally figured it out. Of course, it helps to have an autism diagnosis that tells me plainly that I can expect to have issues with these sorts of experiences. Knowing what I now know about autism, I can plan accordingly. And that’s exactly what I’m doing. I’m preparing in advance for the onslaught. I’m rehearsing ahead of time. I love my family and want to have a good time with them, and I’m determined to find a way.”
September might seem like an early time to be thinking about the holidays — unless you’re the sort of person who gets all their presents-shopping done well in advance. But for VisualVox, it just makes sense.
“Practicing now — breaking up my daily routine a little bit — while there’s no pressure, is just the ticket for getting myself in shape. I think of the holidays as an athletic event (and it is physically and mentally challenging). I also think of the months ahead of time as my “training period”. I give myself little doses of change, of non-standard experiences, of intermittent overwhelm. Then I take some time to recover, think through the lessons, figure out what worked and what didn’t, and then have another ’round’ of challenge.”
If it sounds tiring, rest assured — it is. But it’s worth it.
Is it all work and no play, though? Not at all, according to V.
“Testing myself is only part of what I do — the other part is finding the things in my regular everyday life that I can ‘transfer’ to my family visit. For example, routine is very important to me. It’s essential. So, I repeat certain routines I have at home that make me feel comfortable and cared-for. My morning wake-up routine, for example. Every morning when I get up, I exercise before I do anything else. I ride an exercise bike. I lift some weights. And when I’ve worked up a sweat, my mind is clear and I can get on with my day. I typically have my breakfast right after that, and the day begins in earnest.
“When I visit my family, I make sure I have a good morning workout before I do anything else. And I also make sure I eat my breakfast immediately after my workout. That way, I have a good start that I know works for me — and it’s good for my family, too. Some people try to escape routine to relax and enjoy themselves. I’m the exact opposite. Routine itself helps me relax. Also, I used to be absolutely consumed by physical fitness and kinesthetics. I was fascinated by the human body, especially the muscular system. While some girls drew pictures of their favorite band’s logo, I drew pictures of the major muscle groups. Taking the time to lift a little weight actually makes me feel like I’m 16 again — and that’s always nice, especially when you’re surrounded by people who are constantly bemoaning ‘getting old’.”
Clearly, it’s different strokes for different folks. Routine is helpful?! It’s not boring? It’s actually enjoyable? How many folks groove on routine? Well, clearly at least one person does, and she revels in it.
So, this coming holiday season, prepare to be amazed as VisualVox, the #ActuallyAutistic woman makes her way through the obstacle course of the holidays with her routine intact, her nerves steady, and her family relationships sustained for yet another year!
Stay tuned for more reportage on #ActuallyAutisticAdventures! Discrete stimming that soothes the most jangled nerves… Getting safely up and down stairs despite extreme vertigo and sensory overwhelm… Tips on replying to people who talk a mile a minute in heavy accents… Feigning interest in boring stuff for people you love and care for… and more!
I’m having a strange time at work. My group has been shuffled around into a different organization, and nobody’s sure how it’s going to turn out.
Nobody knows how anything will turn out, these days. Hurricanes. Earthquakes. Nuclear threats. It all starts to feel ho-hum, after a while, and I wonder how I’d feel if this were like 500 years ago and nobody had any idea how screwed up people on the other side of the country/world are. Would we be happier? I doubt it. People crave drama. They look for reasons to be unhappy, to make themselves feel more engaged, more alive.
But my mind is wandering. I’m already off-topic, and it’s still early in the day. I’ve got a full list of to-do items for this Saturday. But it’s worth it. After I get this stuff done, it’ll be done. And then I can just get on with my day.
It’s been a little over a year since I got an official Asperger’s assessment. It’s been a couple of years since I got back on track with managing my autistic “features”. It’s been an interesting trip, and like most folks who go through this process, it’s been full of ups and downs.
Now things are evening out, and I realize that I’m really not cut out for fighting over autism. You know… donning the righteous armor of activism and wading into the fray. I mean, it’s not cool that researchers and organizations are looking for ways to eradicate me, but to assume that they’re going to be successful is a bit of a stretch. And to assume that only direct opposition is going to stop them, is short-sighted, in my opinion.
What ever happened to good old subversion? What ever happened to individual actions and choices that undermine the hegemony of the dominant paradigm? In any case, I’m not 100% convinced that the dominant paradigm is universal, or that everybody wants to buy into it. People want to belong. Sure. That’s true. And they’ll go along with stuff that others offer them, which promises to make their lives happier, richer, sexier, etc. But there’s also an undercurrent of buried intelligence that shows up at the unlikeliest of times.
And that’s the side of people I want to deal with. Not their obvious oblivion.
That’s way too depressing. Traumatizing. Self-depleting.
So, yeah… I’m trying to figure out where I fit on this continuum of action. Maybe I don’t belong on it at all… No, I do. I just need to find the place / way that works for me — and not against me.
One of the things I feel myself letting go of, is my perpetual discomfort with the professional world. I just kind of “fell into it” by default, after I left college, because apparently I’m pretty good at the things I undertake. I’ve got my autistic focus, enthusiasm, my quirky / geeky joy at stuff that most people don’t think twice about, and my enthusiasm is “infectious” as they say. People like working with me, because I really do make an effort to be a good team member and support others in their jobs. And even though I am pretty odd at times, by conventional standards, there’s room for that in the world where I work. Heck, it’s chock-full of “odd birds” like me.
So, why have I been fighting it?
Well, because it’s part of a world that I grew up distrusting and disliking. Corporate America. Bleh! Who would want to be a part of that?! Turns out, I do. I perform very well in the structure and predictability of a corporate environment, and over the years people have really made an effort to include me and advance me. I’ve pushed them a way, though, rejected their offers, and moved from job to job for reasons I thought I understood, but really didn’t.
Turns out, it was alexithymia that was urging me to leave. I didn’t have a good or clear sense of what was going on. I couldn’t tell whether or not I should trust people. I had no clear sense of how well I was doing in my jobs, so I never knew if I was failing or succeeding. I couldn’t “read” people, either. It’s like I’ve been wandering around with a blindfold covering most of my vision and earplugs firmly inserted in my ears, bumping into stuff here and there, but somehow finding my way through… all the while having very little clear sense of where I am or where I fit or what I should do next.
God, I wish I’d figured this out sooner. Could have saved me years of confusion and frustration.
What might have been different? Well, I might have gotten to the place I am now — able to ask people for clarification, able to recognize that I’m not really persecuted at work, I’m just feeling overwhelmed, able to differentiate between actual depression and just being physically wiped out. And not stressed out and pushed to extremes by situations I can’t read.
Well, what’s done is done. At least I know now how things work with me. And I can adapt accordingly. Now I can:
Look for the good in my situation, instead of fretting about how much greener the grass will be at some other company.
Get some extra sleep and spend more time relaxing, instead of burning up all my available energy hunting high and low for the Next Big Thing.
Chill the f*ck out and enjoy myself.
Actually engage with the people I work with and put my energy into making the most of my present situation, instead of always wishing things were different.
I’ve written before about how I need to reset my expectations in life, and it’s still true. I’ve wasted so much time trying to operate like someone I’m not, and it’s burned me out. Fried me to a crisp. Ugh. Time to quit that. Just let it go. Let that go… go… go… )))))))))))
Have a little fun, for once, by God.
Yeah. Let’s try that, why don’t we?
I’m sick of wedging myself into all the unfitting forms. Time to find my fit, and go with that.
Did you enjoy this? Please consider becoming a patron at Patreon.
Never let it be said that the autistic community is one-dimensional and bland. We are anything but. We’re all over our spectrum, with a whole lot of passion behind our beliefs and opinions. Our points of view have been shaped by so much experience — and a lot of pain — with an intensity that I’m sure lots of non-autistic folks find daunting.
Recently, Austin Shinn posted a piece called “The Silberman Issue“, which raised concerns about a non-autistic individual becoming a sort of “spokesperson” for the autistic population. Austin says it better than I can paraphrase:
Steve Silberman has become a very serious problem for autistic people. He’s become the de facto voice for the autistic community when he is not a member of it. He has become the person the media cites as the expert on the subject, crowding our own voices out of the conversation. And I can’t lie: I feel he’s at fault in this as much as the media.
Silberman can’t be faulted for trying to sell his book, to be clear. Yes, of course he’s got every right to do so. His book is on autism. I expect him to talk about it nonstop. I talk about my own book a lot after all. I realize that he is trying to make his living.
But early on, the idea that he was a voice for us solidified in the media. I’ve read a number of stories that promote his book as if it’s the definitive tome on our lives. It gets frustrating to see articles treating him as the expert on our lives. It’s something I’ve seen constantly since the book came out and I truly think it’s getting worse.
I have to say, I agree to some degree with this point of view. I also agree with the commenters at the blog post, that we do need allies, and we do need non-autistic folks who are deeply sympathetic to our situation. I also appreciate Silberman’s response to Austin’s piece, where he relates that he’s “been trying for a long time now to do something much more subversive than ‘name drop’ autistic writers”. He goes on to give concrete examples of how he’s doing exactly what Austin’s piece seems to ask for — yielding the floor to #ActuallyAutistic individuals to speak for themselves.
I really appreciate that. It’s incredibly important that those in a position to signal boost us, actually do it. And quite frankly, Silberman can do that because of his widely perceived expertise in the history of autism and his long-time consideration of it. He is in fact using his influence and position for some good, regardless of how often and to what extent we may believe he is.
I don’t doubt that Steve Silberman is a powerful and influential ally, and I don’t doubt that he’s taking some important actions to promote understanding about autism and our culture. I also don’t doubt that many neurotypical folks are far more comfortable talking to and interacting with (and believing) someone like them. People look for individuals they can relate to, especially when it comes to a subject as chargedas autism. I’ll defer commenting on the problematic source(s) and nature of that “charge” — it’s a rabbit hole I’m not going down, right now. Maybe later.
Anyway, yes, we sorely need competent, sympathetic, and relatable “translators” to bridge the gaps between the autistic and non-autistic world. And Silberman has shown himself to be all of those things — and more. The public perception of autism is (‘scuse my language) a shitshow, and while things are changing, it’s happening very, very slowly. Media still love to run stories about how awful having an autistic child can be. Rolling Stone ran a story a little while back, along with the San Diego Union-Tribune. No, I’m not linking to them. Believe me, they’re not a good use of time.
And yes, it’s incredibly refreshing to hear a public figure teaching the world that autism is a difference, as well as a disability, and that many an autistic individual has contributed to the greater good. I think that’s actually an understatement. That internet thing? You’re welcome, world. It’s been our pleasure to build it for you, although you’re not doing such a hot job of using the powers for good, instead of evil. It’s wonderful to hear someone in the mainstream talking about us like regular human beings with so much to offer, as well as certain difficulties.
Where are the autistic voices? Where are the books by us, about us, describing our world in accurate detail to the mainstream / non-autistic population? Where’s the heavy-duty promotion of our writing, which is prolific and often insightful? Where’s the autistic presence in the major booklists? Yes, books about us by non-autistic authors (including fictional accounts — that book about the autistic boy and the dead dog) are widely read and positively reviewed and make it onto the bestseller lists. Movies are made about us by large studios, and they have been known to rake in some dough. But where’s our own presence in the mainstream media and publishing scene?
Where are we, indeed?
I think our relative invisibility and need for representational proxies has a number of contributing causes, and not all of them are the fault of the non-autistic world. There are many, many different aspects to this, including systemic injustices, inequities in education, earnings, healthcare, etc. which hold us back. But are we doing everything in our power to turn the situation around — for / by ourselves?
I’m not so sure. Here are some points I think we could address, ourselves:
We’re not well-known. Yes, many allistic people have a skewed idea of how we are and what we’re capable of, which makes autistic culture less attractive or “consumable”. And we tend to suffer under that. Our invisibility makes it easier for non-autistic folks to jump to conclusions about us, based on widely promoted images that serve the intere$ts of fund-raising organizations. Thing is, we curse the darkness an awful lot, gnashing our teeth about our marginalization, while not lighting a lot of candles and stepping out of the shadows. Of course, disclosing your autism to the world can be a tricky, tricky business. I’m one of the folks who stays behind the scenes, due to the social bias / job-related risks associated with disclosure. I have told a very small number of people I know that I’m on the spectrum (and most of them don’t believe me, because I don’t “act autistic”). Most of my autism-friendly interactions happen online, well out of sight of the public eye. So, I’m certainly not helping matters, by keeping quiet and not helping others broaden their view of “what autistic means”.
We don’t self-promote effectively. I’m not just talking about individual self-promotion. I’m talking about intra-cultural promotion of autistic writers, artists, musicians, actors, inventors, engineers, programmers — both within our community and beyond. Signal boosting. Getting the word out and rallying behind the #ActuallyAutistic people who are doing cool things. We tend to do a not-so-great job of promoting ourselves — or promoting each other on a regular basis. We’re autistic, after all, which can often mean that our energies are limited and our interests are circumscribed. And I have yet to come across other people whose “special interest” area of intense, specialized focus is the widespread promotion of autistic culture. I’m actually that sort of person, but I seem to in the minority. Plus, I’m still figuring out how I can do a better job of it. I’m a strong systems thinker, so I’m naturally working on a system…
We don’t fully $upport our own. If you want culture to survive — even thrive — you’ve got to put something into it. It costs money to live in this world, and if you’re going to make art and write and dance pursue anything which isn’t immediately profitable to the mainstream, you need to have support. Problem is, a whole lot of us are pretty short on cash. A whole lot of us are poor or low-income, and we don’t have a lot to offer by way of discretionary funds. I’m myself, am battling back from the brink of financial disaster, thanks to a series of medical issues which were made that much worse by my communication issues. That’s on top of chronic employment upheavals that have stemmed directly from very autistic difficulties. Things like that are serious problems for many, many of us. And they starve our culture. It prevents us from supporting our creators, and it prevents our artists and writers and musicians and other creatives from building out our world and making our presence known.
Our creators don’t always make it easy to $support them. Cultural support works both ways. Creatives need to find ways to produce work that is accessible to folks without a lot of money. It’s possible. You can do a whole lot for a little bit of money, if you know where to look for the deals and free stuff. Yes, artistic integrity is important. Yes, you have to honor your vision. Now, could you do something like offer your book in digital format for free, on the first day of the month for three months in a row, like Sam Craft has done? It’s a quick way to cut a lot of people a break, while not ruining your bottom line. There are ways. There are options. Creativity applies to the “delivery” as well as the creation of culture.
I could think of more reasons why we’re not standing atop the proverbial mainstream mountain with our AS flags waving high, but let me get back to the point I started out trying to make:
We can’t expect others to do it for us, especially the mainstream. We’ve got to step up and take our rightful place. Either that, or carve out our own substantial niche where we are very clearly the ones defining our identities and our priorities, and it affects us a lot less, what others say about us. Steve Silberman said in a recent interview that Autistic adults are leading the “first civil rights movement of the 21st century”, and I agree. We have to realize that for ourselves, too. I think we should value our own contributions, our own ways of being and thinking and doing, and spend a little less time worrying about what others think of us.
If we are uncomfortable with how the success of Neurotribes is casting a non-autistic individual in a role as a “spokesperson” for us, what are we going to do about it? Who’s going to step up and respond in kind from within our ranks? We can criticize — and I do think it’s important to turn a critical eye to such matters — but we also need to do something of our own to counterbalance the situation in our favor. Because we can. We have tremendous resources and unparalleled powers of focus, passion, and systematic drive to create new — and better — things in this world.
My problem is not that Neutotribes has been so successful in the mainstream or that images of autistic people are defined to this day by non-autistic folks. It’s that we don’t seem to put concerted effort behind a response to that phenomenon. We can do a whole lot more which is positive and pro-active and displays the full range of what we’ve got to offer.
There are a million different ways of getting out there and making a difference for ourselves. And I think we should explore each and every one of them with every ounce of our autistic capability.
Autism = extreme practice / system / doctrine of the Self.
For me, that’s the only — the only — way I can effectively create. And think. And live.
Other people’s input is fine for them to offer, but it’s for them. Not for me. I cannot abide having input from others into what I’m doing, while I’m doing it. Every now and then, I’ll make an exception for works that are intended for a wider audience. But the works I create for myself, and for the sake of creating — totally, 100% Autistic. and that’s absolutely perfect.
The danger, of course, comes from my developed way of relating to the rest of the world. I know I am different. I have no desire to conform. So, I keep myself to myself, and I meet others where they are. I model my behavior after theirs, when we are interacting. I meet them as they are, where they are. I walk through a foreign world, a stranger in a strange land, and very few people have an inkling that there is more to me than what meets their eye and ear. I speak a million “languages” fluently, and I “pass” as neurotypical with the best of them. I master their modes, which are not difficult to mimic, and I speak to them in their own vernacular. So we can meet, interact, and part ways without undue friction.
When in Rome…
I don’t do this because I’m afraid. I don’t do it because I have a gnawing need to fit in. I don’t do it because I’m ashamed of myself. I do it out of respect for the relationship, the connection, the interaction which becomes larger than the two of us and sets the stage for other interactions they have with the world. It’s bigger than me. It’s bigger than them. And it’s important. Because this is how peace starts — at the place where I know I am so much “enough” that I can check myself at the door and put myself at the service of the interaction, the connection, the humanity of the situation.
I am completely different from what most people think I am. Everyone has a different “version” of me in their heads, whether they know me in person, or they know me online. It’s not because I have no solid identity of my own. It’s because I have such a strongly solid identity, that I can put it aside for the time I’m interacting with others, for the sake of the interaction. For the sake of peace. I’m not neglecting myself. I’m seeing something larger, something brighter, something more valuable than just satisfying my own need to be seen and accommodated.
I have my limitations. I have may disabilities. I have my challenges. But in those times when the situation calls for strength, I can find that, too. And let that take the lead. Because it’s needed.
I am completely different from what most people think I am. And that’s fine. Everyone sees and experiences what they need most, so who am I, actually?
I’m autistic. I am completely self-referencing in all the most important ways that make me who and what I am. And that’s no more “disordered” or “pathological” than being a native Spanish speaker in a small town in northern Wisconsin.
Yes, I am treated differently. Yes, I am sometimes seen as too different for comfort. But that’s simply because nobody around me speaks my native language — not that I am any less intelligent, any less capable, any less human, than all the native English speakers of a certain dialect who never bother to learn my “language”.
I am a refugee in the midst of allistic neurotypicals, every time I leave the “home” of my inner world to interact with the standard-issue world around me. I am an expat, a changeling, a foreigner… a bit of an intruder, to be honest.
But unlike so many, I can always return to my “home”. The safety of my mind, my heart, my inner world which bears to resemblance to the ugly, hateful, divisive creation of individuals who are so desperate to prove to themselves that they matter and they exist, that they will destroy everything and everyone around them, just for a fleeting instant of relief from their own self-imposed misery.
And to that home I withdraw. I haven’t been doing that nearly enough, lately. I’m starting again. This weekend was a beginning. Re-training myself to retreat… to know when it makes more sense to fall back than to engage. Protection, pro-active protection from a world created by people who don’t care if everything goes up in flames… so long as they can believe they’re right.
I’ll be back. Of course, I’ll be back. But I’m also learning the value of postponing that inevitable resurfacing.
I had an interesting talk recently, with a 20-something Aspie woman, discussing jobs and job situations. She was kind of freaked out that she’s 26 years old, and in the last 4 years, she’s had something like seven different jobs. I told her that sounded familiar. I bounced around from job to job for years, never staying at any one of them for longer than a year. But eventually, I found my way, I connected deeply with something I explored on a whim, and now I love what I do. It’s awesome.
She was pretty torn up about being a “failure” so early in life. She’d been told that as long as she did well in school, she’d succeed in life. Nobody ever mentioned the whole social thing to her, and she blames her social ineptness for her inability to keep a job. She’s really upset about being on the spectrum, which I can relate to. It’s not easy, sometimes. The worst thing is, she seems to think it’s disabling her and keeping her from living her life… or that the neurotypical world is out to get her.
And I was really struck by the disparity between our perspectives. I didn’t worry very much at all about “not being able to keep a real job” for the first 10 years after I left school. I was in my early 30s before I found something that actually held my attention and made me want to stay. My parents worried, sure. The rest of the world worried, sure. Everybody said I was DOOMED if I didn’t stick with those shitty-ass jobs that were supposed to be so awesome. They sucked. I kept moving.
But I didn’t really give a damn. I was making rent. I was living my life. And I didn’t want to get tied down, anyway. I was too busy writing, living life, making art, just going about my own damn’ business. Plus, I was able to do a lot of super-fun stuff while I was drifting. Nowadays, people tell me how jealous they are that I “got to do” all that stuff before…
Moving to Germany for a few years, getting involved in a musicians collective out in California, exploring the US as my partner and I moved back and forth across the country in the 1990s. Doing a bunch of different jobs and being a “crazy artist” on my own time, living in a really cool apartment with the floors covered by refrigerator box cardboard that I was turning into ART. Writing poetry. Publishing my own work. People act like I was magically bestowed the opportunity to do all that, but each and every step of the way involved choices and costs and sacrifices that put me at odds with “real world” expectations. It doesn’t come for free. You have to make it happen yourself, sometimes at the expense of support and respect from others.
Anyway, I tried to put that young woman’s mind at ease, but she was pretty torn up about things, pretty focused on how f*cked she was by her job failures, how she was doomed by her neurology, and how she didn’t trust herself to move forward. She was afraid of failing. I told her that failure is just a form of information, and nothing more. If you stop completely and don’t use the information given to you, that’s failure. But hitting a dead-end a bunch of times isn’t failure at all.
I’m not sure if I helped her. Even if I did, she then drove home to her parents’ place, where she’s living, and I can’t imagine they’re going to sound anything like me. She said a bunch of stuff about what they think of her situation and what she should do about it that raised some flags for me, but I don’t feel comfortable conveying any more detail about it.
Long story short, I realize now — having been on the planet nearly twice as long as that young woman — that I’ve actually really enjoyed my “career path”, if you can call it that. The thing I’ve enjoyed most of all, is not having a career path at all. I have always looked for good-paying work that I could do very well, so that I could just live my life without fear of destitution. That involved temping for attorneys for a number of years — terrible work, but it payed well. It involved taking positions that were incredibly demeaning and taxing, which had sufficient benefits to keep my partner and me healthy. It involved taking whatever work was available, at the time, even if it was “beneath me”. If it paid and was respectable in the eyes of society, I did it.
I didn’t crave positions that were prestigious and established. I just wanted jobs that covered my expenses (which are considerable, actually). I needed something that would relieve me of existential anxiety, so I could write and make art and travel and do fun things. So I could live my own purpose, and get to enjoy myself in the process.
That’s always been my goal, from the start. I really don’t care about the whole “career” thing — getting hooked into a system that never asked me how it should be structured, or what the right approach should be to provide fulfillment and satisfaction to everyone who signs on. The established professional world really has nothing to do with me, to be honest. It’s foreign to me. And antagonistic. It’s all a framework for making rich people richer, consolidating power with a few choice individuals, and justifying all sorts of socio-political conflict and culture wars.
Devout “professionalism” is a waste of my time. Don’t get me wrong – I am a consummate professional at work. But that’s not my whole identity. It’s not where I get my sense of meaning and purpose. It’s fine for others who get something out of it, but it has nothing to do with me. It just seems like a way for some folks to cement their unimaginative places in the established order, amass power and influence to give them a sense of control over an indifferent and unpredictable world, and find to meaning and purpose in their lives that isn’t otherwise there.
It solves problems I don’t have. So why bother?
I’m at the point in my professional life now, that I have developed the social skills and interpersonal abilities that allow me to pass extremely well in the NT world. I don’t have to even care about interactions to succeed at them. I can feign interest (even enthusiasm!!!!) over things that I couldn’t care less about, and would never miss if they weren’t there. It’s all just part of the role I play — like a soap opera role — to get by in the world.
And at the end of each day / week, I can retreat to my own space and live my inner life to my heart’s content.
The bills get paid. I have a daily structure that keeps me on track. I have a position that other people are impressed by, in an industry that pays well. The last thing I’m interested in, is ambition to “take it to the next level”.
What I really want is my freedom — and within this structure, I have exactly that. I have money to eat and pay my bills. I have a position at a company that “places” me in a social context both within and without the corporation. I have flexibility, and I have the internet. I have my books that I can buy at very, verylow cost from abebooks.com with the money I make. I can buy my partner flowers. We can go out to eat, now and then. We can take vacations… sometimes even beyond a few hours’ drive of our home. And all the while, I can observe my life and make sense of it, creating art from words and lines and shapes and colors.
I can enjoy myself. And I can do this all freely. Because my passions are not tied to a profession that’s at the mercy of a larger industry and invisible, impersonal forces that don’t care whether I live or die. I can research and write books to my heart’s content, and publish them myself, without even so much as a fleeting care about being rejected or editors who try to mess with my words and meaning. I can draw and mix colors and designs without concern about critical approval. Who cares, if people like my stuff or not? I love it. And that’s all that matters. I can go for long walks in the woods, reading my work emails on my smartphone and dictating the responses, so I’m “still in the loop” (God help me, with that expression – I use it, but when I think about it, I get dizzy, feeling like I’m being spun around in a loop).
I can dive deep into my special interests to my heart’s content. And every now and then, I’ll find someone who shares my interests, and then we can geek out!! I can spend my early morning hours exercising, then follow that with some reading and writing and researching and fiddling around with ideas… all in the privacy of my own quiet study, surrounded by my collections of glee-inducing objects, with a delicious cool breeze wafting through the windows… listening to music I love, without interruption… stimming whenever I like without fear of being observed by someone who doesn’t get it… I can then go to a job surrounded by people who (mostly) respect me for what I do, and have a use for my abilities and are entertained by my exuberance over “the little things”… and I can do things I like to do with my partner, like go watch sunset on a nearby ridge after we’ve had a tasty dinner of stewed chicken and vegetables, and then watch a movie we both love… and at the end of it all, I can sleep in my own bed with the room at just the temperature I need.
All of this freedom to explore and experience my own passions is entirely without commercial pressure. I can pursue my love of medieval history, women mystics, science and philosophy and assorted esoterica, without constant fear about displeasing someone, and ending up not being able to do what I love, the way I love, to my own heart’s content.
Yeah, I have a pretty swell life, actually. Sure, there’s a lot of stuff I could do without… work can be extremely challenging, confusing, and a constant sensory insult. I’m nowhere near financially secure. And I have intermittent struggles with certain physical ailments, not to mention a lot of social confusion. But I have this core, this base, this foundation of self-sufficiency and self-determination that precious few people have.
And I have Aspergers to thank for that. Autism. Neurodivergence. I’m well and truly set, in the areas I care most about. Thanks to being on a spectrum that never fails to keep things interesting.
I’ve got three days pretty much open in front of me. Actually, two days sandwiched around a day where I have Important Things To Do.
On Sunday, I have to will help my partner with a project she’s working on. That will take a few hours on Sunday morning and/or afternoon. It’s important to her, and I’ll the one person who can help her in this particular way, so I’m helping. I’ve decided to be good-natured about it.
In between, for a few hours, I’ll be volunteering at a local botanic garden, leading tours for people who want to know about the place and the plants.
I got into this because I needed to have more social interaction in my life. But I can’t just run around and do meetups. That’s exhausting for me. All the new faces, the new situations, the social dynamics… I’ve been attending support groups and social events at a local AS organization, and that’s been good. But it takes a lot of time and energy, and it’s also an hour’s drive from my home, so on top of being socially saturated and often confused, I end up exhausted at the end of it all.
I generally can’t just hang out with people. I hatehanging out. It infuriates me, and I resent when other people expect that I’ll be into it. I don’t want to be unkind, and I do want to give people a chance, but just hanging around talking about stuff we may or may not know about tests my last nerve. There has to be a purpose to my interactions. I have a lot more that I want to be doing with myself than my available time allows, and if a social situation doesn’t serve a useful purpose, well, it’s time that’s taken away from those Very Important other things I’d rather be doing.
But I need to be social. At least once in a while. With living, breathing people – not just in social media. I need interactive activity that’s structured — with a beginning, a middle, and an end. And I need it to be pretty well scripted, with specific roles for everyone involved. I also need it to involve strangers I will probably never see again in my entire life, so that if I mess up, I won’t have to worry about looking foolish to my friends. As the tour group leader, I have a role that’s clearly defined, talking to visitors who are strangers to me and will continue to be strangers in the future. The pressure’s off.
That’s where being a tour guide at the botanic garden comes in. I originally signed up because I wanted to do some active gardening with others. I wanted to be outside, doing something constructive with other people. But as it turned out, when I talked to the volunteer coordinator, she told me that I should be a docent for them. Lead tours. Talk to people. Share information.
I was disappointed at first, because I really wanted to be out in the elements, getting my hands dirty (literally) on something I could just walk away from after a few hours. I wanted to get away from people, not dive into the midst of them.
But I went with it. Because they have a real need for tour guides. Docents. People who can show folks around and tell them about the place.
I attended a bunch of training for docents, skipping out of work for a few hours to use my allotted volunteering hours they give us so we can “give back” to the community. And the more I interacted with the staff there, the more I realized that I would probably not be a great fit for the gardening part. I’m too strong-willed. I don’t do well with domineering authority figures. And the folks who run the gardening part of things can be pretty domineering. I’m much better suited to gathering information and sharing it with others.
See, the thing is, when I’m looking for things to do, I need to go with my most Aspie nature and qualities. It does me no good to try to override my nature and make myself into the person I think I should be. Or the person I think other people want me to be. Half the time, I’m wrong about what other people expect of me, anyway. I’m terrible at that, oftentimes. So, why bother? Especially when there are other things I can do so amazingly — far better than most other folks — and really enjoy myself in the process.
I have a keen scientific interest in plants and botany. I’m not the botanical scientist my grandfather was, but I have a fascination with plants that’s infectious. And I love to gather information. I also love to share information, especially if I have a captive audience. I love to hold forth on stuff I know about, and the context of the one-hour botanical garden tour can keep me on track and keep me from rambling. I’ll be expected to be a garden nerd, and I can do that. With gusto! I can leverage a truckload of Aspie traits to make my tour group’s lives that much more interesting. Without my Aspie traits, it would be considerably more difficult. So, I’m going with it. All the way.
I mean, seriously… Why struggle trying to make myself into a bad imitation of a neurotypical person, when I can be a completely fabulous Aspie instead? It’s all in how you carry yourself. And even the most judgmental, narrow-minded neurotypical can — and often will — appreciate someone who’s completely different from them, who’s comfortable with those differences and “rocks” it like no one else.
I learned that lesson a long time ago — totally by accident. I’ll talk more about that, some other time.
Anyway, I’m lucky the volunteer coordinator worked me ’round to the idea of being a docent. I haven’t led my own tour yet, but I think I’m going to be really good at it. And I think I’m going to have a great time. Meeting with a group of complete strangers, putting them at ease, walking them around the gardens, sharing tidbits of information and history, pointing out interesting sights that catch my always-hungry eye, and being witty… for an hour. And then everyone splitting up and going their own ways.
That’s my idea of a perfect social interaction. And I’m lucky to have found it. Very lucky, indeed.
So, that’s what I’ll be doing on Sunday for a few hours. I’ve got to study up a bit, before I go, so I’m not a blithering idiot with my tour group. It’s a holiday weekend, so there may be a lot of people around. We’ll see. In any case, I’m looking forward to it.
Because there’s a beginning, a middle, and an end. And I may never see any of these people again, so I’ll be free to improvise without fear of future repercussions.
I was out shopping for stim toys yesterday at a local gift store, when I had one of those typical geek-out moments with NT folks who weren’t nearly as enthused about my subject as I was. And true to form, I couldn’t stop that downward slide into enthusiastic social awkwardness that left everyone feeling a bit strange and strained.
I guess maybe I was feeling a little self-conscious, because I was buying the colorful squishy and bendable toys that are supposed to be for small children, but were for me. I was really caught up in examining them, literally like a kid in a candy shop, and I felt a little self-conscious… braced for some social interaction, where someone might come up and ask me what I was doing or try to strike up a conversation, and then I’d find myself explaining what I was doing, and why.
People like to talk to me. It’s the bane of my existence. I do long for human contact, but it’s so damned fraught with (insert just the peril of your choice here) that I just dread it. I get confused. I get turned around. I misinterpret what people say. They misinterpret what I say. And worst case, is when someone thinks I’m being more forward than the average bear, and they take it as a flirtatious or sexualized invitation. That’s gotta be the worst. Not only am I happily married for 25+ years, but I’m also about the last person to desire an outside dalliance. When I was younger, it was one thing. But I’ve got no energy for that sort of thing, anymore.
Now, with regard to my anxiety over feeling compelled to explain to people that I was looking for stimming toys for myself… I could have easily passed as a parent or an aunt buying toys for her child for her nieces or nephews or a friends kids or whoever. Despite my compulsion to just lay it all out there, I wouldn’t have had to tell people the whole truth about what I was up to, including that — guess what, I’m autistic, and I need to have extra help keeping myself focused and calm due to sensory overload. I could have pretended to be a loving mother or aunt or friend buying for an upcoming birthday. But it was the end of the day, and I didn’t have the energy to pretend. I just wanted to enjoy the experience of getting myself some stimming props — reallyenjoy it.
I guess I did feel self-conscious about it, though. And I guess that made me nervous.
That whole going out in public thing.
Anyway, I just wanted to get out of the store. I didn’t want to chat with the ladies behind the counter. I just wanted to pay my money, grab my toys, and go away, so I could play with them and soothe myself and just enjoy myself, at last.
It almost worked, too.
I was at the checkout counter and had just about completed the transaction without incident, when one of the young women standing behind the counter complimented me on my blouse. I was wearing one of my light silk blouses for work, which is one of my favorites. I have five of these types of blouses, each with a different pattern and in a different color, and they are lifesavers. They’re dressy enough to wear to work, but they are also incredibly comfortable. The silk is very light, and it doesn’t chafe. I can roll up the sleeves, or I can leave them down, which is rare. My wrists are very very sensitive to touch, and I usually have my sleeves pushed up to near my elbows. These blouses are different, though, and they don’t bother my wrist as much.
And the best thing of all, is that I have enough of them that I can wear a different one on each day of the week and not run out of comfortable dress clothes for work.
“I like your shirt,” the young lady said.
“Thank you!” I smiled in my brightly NT-ish way, all the while just wanting to get out of there.
“They’re nice colors,” said the other young lady.
And I was off to the races.
“Thank you,” I said with a sudden rush of energy. “It’s really comfortable, too! It’s warm in the winter and it’s cool in the summer, and they’re light and feel really great!”
The women behind the counter smiled at me in that way that I can never figure out. Do they want me to shut up, or keep going? I couldn’t tell. So, I continued. I told them all about how I have four more of them at home, all with different colors and patterns, so I have a different one for each day at work, and once again — how comfortable they are, in both summer and winter. Seriously, those blouses are a Godsend, as most clothing is (and always has been) a torture to wear. I was so happy to share that information with people I thought were interested, but the whole time they started to get this distant look in their eyes like they were sorry that they had even mentioned it.
Not to be deterred, I told them about how they traveled well, then I could fold them up tight (I made a squishing motion with my hands) and pack them (I mimed putting them in a suitcase), and then when I put them out on the hanger, they fell right out (my hands waved in front of me, as though with a life of their own). It was a total geek moment, replete with all the delicious details I could muster.
And by the time I was done talking, I realized it was far more detail than any of the young women at the gift shop actually wanted to hear.
Panic. Utter panic. I had that sick, sinking feeling in my gut — you know, the kind you have when you’ve been having a wonderful time sharing about things that mean so much to you, and it brings you to life… and then you see the glazed-over looks in the eyes of the people you’re talking to, and you see a sudden glint of something that could be mean-spirited judgment, and like all those other times, you expect to turn and walk away, while they whisper things behind your back about being “weird” a “geek” or just “really, really strange”.
It’s that moment when you realize that, once again, you’ve mis-read a situation, and while you thought it was wonderful and energizing, it was actually a trap that you walked right into. A trap that you set, yourself, and that you can’t even extract yourself from, because by the time you figure out what’s what, the damage has been done, and once again, you’re the weird one out. On the margin. The butt of jokes. The freak, the weirdo, the crazy lady who can’t take a hint.
And it’s crushing. Because all I ever wanted to do, was share what I love more than anything – to spread the joy, and see someone else light up the way I do, when they too realize the beauty and elegance of an idea, a thing… a dressy blouse for work that doesn’t trap you in a hell of tactile torture that you’re obligated to wear, or you might not fit in… you might not look like a good team member… you might get marginalized, and eventually lose your job.
This is one of my ongoing social issues that really undercuts me on a semi-regular basis. I get so excitedabout things that I care about, that I don’t actually realize that other people don’t want to hear the level of detail that I’m offering. I can’t for the life of me understand why someone wouldn’tcare about these things, because it makes so much sense, it solves so many problems, and it’s such a beautiful and elegant solution that you don’t come across every day.
But those young women probably never could have related to my elation. It was just a pretty blouse to them. But to me it was a lifesaving tool to keep me properly integrated with the rest of the NT world, keep food on my table, and not exhaust me with tactile overload for 9 hours out of the day. There’s no way they could have known just what that blouse — and all the others like it — meant to me. Because they’ve probably never had a single moment of their lives enduring excruciating autistic overload, because “that’s what everyone else does”.
All they probably wanted to do was pay me a complement. I got that, as I was getting in my car and driving away.
Once again, too little realization, a little too late.
And that’s what happens when I’m fatigued, overloaded, and I have a handful of stimming toys I’m super excited about.
One of the big “stoppers” for me has been the input from experts who were convinced I wasn’t on the spectrum — or perhaps more accurately said, were never properly shown how I was on the spectrum (big difference).
They were the experts.
They told me I wasn’t on the spectrum because:
I wasn’t disabled enough, or
I wasn’t like other autistic people they’d encountered, or
I didn’t fit the criteria (which have been largely based on observations of young white males), or
I was too empathetic, or
I could relate to what others thought and felt, or
I didn’t show the signs that they (everyone) normally associated with autism or Asperger’s.
And being the Aspie I am, I believed them. A number of writers and researchers, including Tania Marshall and Samantha Craft, have written a great deal about how women with Asperger’s can be trusting, naive, gullible, and compliant.
Social Naivity, may believe anything told to them by others (gossip, stories, jokes and teasing), difficulty interpreting the intentions of others, Misinterprets other peoples intention, often jumping to conclusions about others
Naivety, innocence, trusting too much and taking others literally are a powerful concoction for being misused and abused
Both of which were serious factors in me being dissuaded from an Asperger’s diagnosis — not once, but twice.
So, going into a therapeutic working relationship with someone who frankly didn’t have the knowledge, willingness (or possibly skills) to accurately assess my situation, was a set-up for failed diagnosis. It was a setup for years of delay, years of confusion and frustration… and worst of all, years of being “treated” for issues that stemmed not from my own emotional damage, but from the simple fact that my alternative cognitive modes were at sharp odds with a neurotypical world that could do nothing other than pathologize me, and tell me I was wrong, wrong, wrong, for being the way I was.
Different from them.
Just different in ways that nobody ever bothered to understand — including my therapist.
But let’s back up a little bit and add some context.
From ~2007-2010, I was in psychotherapy to get assistance in dealing with caregiver stress I was facing at home. My partner had some serious health conditions, and I was her sole provider and carer, cooking, cleaning, managing medications, and keeping her going as she recovered from a hospitalization and several co-morbid chronic conditions.
I didn’t have much support of my own (I had a very solitary, “semi-monastic” Aspie life, which didn’t include much socializing. I had hoped to get help with working through caregiver issues, having someone there for me as a sounding board, and also coming to terms with some of my own issues that I felt were blocking me from making good decisions.
In retrospect, I now realize that so many of “my” issues were really about being an overwhelmed Aspie, and if I’d had help in understanding my own personal “constellation” of traits and qualities, it might have helped me navigate everything better. But I was pretty whacked out from the caregiver stress, as well as being The Main Financial Support for my household, and I wasn’t in very good form to be sussing everything out in a systematic way. I could have used some help with that.
I actually took steps in the direction of understanding myself, though. In the course of researching my partner’s health issues, I (once again) stumbled across information about Asperger’s Syndrome, which I had learned of in the late 1990s from my co-workers in high tech. They had all taken the Aspie Quiz that was out there, and they encouraged me to do it, as well. I scored well within the ASD range, and I eagerly explored Asperger’s for a while, as it really answered a lot of questions about why I was the way I was.
Unfortunately, there was little to no reliable information or support regarding women with Asperger’s in the 1990s, so after a few years, I let it go, and just got on with my life. Caring for my partner, however, really caused my difficulties to flare up, round about 2008, and as I was reading old and newer information on AS, I realized that a lot of my issues could be traced directly to my Aspie challenges.
It’s funny, how I’d completely put Asperger’s out of my mind for years. But I’d turned my hyperfocus to things other than the autistic spectrum — the 12th Century Renaissance in Western Europe and a novel I was working on, were the primary focus of my cognitive activities… and then of course dealing with my partner’s health issues. Once I turned my hyperfocus back towards AS, however, it really lit a fire under me.
Infused with new energy, I took a number of online tests — not once, but multiple times, just to make sure, each time being as honest as I could, but shading things in slightly more conservative directions. No matter how I sliced it, I always ended up well within the Autistic Spectrum range. Then I took the tests with my family members in mind, and a clear hereditary element shone through.
I documented all my findings for myself, and also to share with my therapist. I was so excited,because it felt like a big-ass missing piece had fallen into place, and so much could be explained by Asperger’s. I felt as though I finally had a way to understand the true nature of my difficulties in the context of a larger condition — or constellation of conditions — that was both specific to me, as well as shared by a wider community. At last, I felt connected to something tangible, something measurable, and it was thrilling for me.
But when I shared my findings with my therapist, she dismissed my suspicions without even looking at the documentation I’d compiled. She said I didn’t fit the profile. She knew people with Asperger’s, she told me, and I wasn’t anything like them. “They had Asperger’s,” she told me, “You do not.”
And that was that.
It was deflating, dismissive, and a little demeaning. It was also patently ridiculous that she thought she could spot an Aspie a mile away, when she was living with a man who exhibited every classic trait of extreme Asperger’s, yet she said he simply had ADHD, and nothing more. Even when I asked gingerly if he might be on the spectrum, she shook me off as positing a ridiculous proposition.
Being the naive and trusting soul that I was, and not believing she would have any reason to deceive me, I ended up taking her word for it. I believed that as the trained professional in the room, she knew best. And it was the worst thing in the world for me at that time. Our sessions proceeded to meander on numerous wild-goose chases, as she looked for deep emotional roots to issues which I now believe were really just my misunderstood Asperger’s “acting up”.