This is a quote from Austin Shinn’s book A Flickering Life: A Memoir of Autism, which I’m really enjoying. I started and stopped it a few times, over the past months. But today I spent a longer while with it, just relaxing this morning, instead of running around in hyperdrive mode, like I did yesterday. I really wish there were an audiobook version I could listen to while I’m out walking. Maybe I can get an audio reader… Dunno. I need to look around for one.
As I said, I am really enjoying this book. That’s echolalic because saying so is very true, and it feels good to say it. I’d say it again, but unless you feel the words yourself, the echo of them may be more annoying than enjoyable. So, I’ll stop.
Is it wrong to enjoy an account of another person’s pain? There’s plenty of discomfort he talks about, but that’s not why I’m enjoying it. The realism of it, as well as the shared experiences… that’s what I’m enjoying. Not so much the cringe-worthy moments, which bring back my own bad memories of bullying… never being recognized as having specific issues that were blocking me… the trauma of change… school’s negative aspects… This is why it’s taken some start-stop to get going reading it.
Then again, there’s a lot to be gained from seeing that your cringe-worthy moments weren’t yours alone. Someone else on the planet actually went through those things, too. It’s not a sense of schadenfreude I feel — more the relief at knowing, once and for all, I wasn’t crazy or “imagining” those things. And it wasn’t right for adults to blame me because other kids were bullying me.
No, I really didn’t do anything wrong enough to deserve that treatment. Other than being different. I became an insufferable prig, when my family moved from a small city to a very small town when I was 10. I truly did consider myself better and smarter than my rural peers. It wasn’t hard, really. I still do, to be honest… At least, in certain ways. In other ways, I’m a total idiot, and they’re geniuses.
Popular myths about childhood — as it’s portrayed in movies and television — bear no resemblance to my own experience. Except Game of Thrones. Austin is so right about that one. Let that sink in for a while. Probably the most real time I had in school, was when we studied Lord of the Flies in English class. I kept looking around the room wondering which one of my peers correlated with which character.
* Note: I’ve spelled “rigor” with a “u” (British spelling) because it actually feels more rigourous 😉 Ha ha! Just having a little semantic fun on a Friday.
This is another one of those dog-tired days, when my mind is spinning and I have no idea how I’m going to get through the day. I’ll get through it, of course. It’s what I do. But in one piece? In a good frame of mind? I dunno.
I have to deliberately remind myself of the fact that I’m tired, because I tend to lose sight of that. I get so tired, I can’t figure stuff out — including what sorts of emotions I’m having, and what I should do about them. I get physical weariness confused with depression and low self-esteem. It probably sounds strange, but a lot of different emotions feel like each other to me, so I have to sort them out logically, scientifically, objectively, in order to not get dragged down into an emotional hole. Once I figure out what the emotions are really about, I can get on with my life without quite as much suffering.
Come to think of it, I think that’s why blogging helps me so much. It helps me sort out my emotions — literally — and figure out how I’m truly feeling.
Anyway… I’ve had a heavy week of peopling, and it’s taken a toll. I had a lot of meetings, some of which felt like utter failures, but which were actually okay. Nobody seemed as horrified by my performance as I was. They all seemed to think everything was fine, while I was convinced I was careening towards disaster. I know where the disconnect is happening. My emotions are getting jumbled up, and I don’t have the presence of mind to sort them out, sometimes. I haven’t yet gotten back in good shape from my business trip, last week… and last night, it felt like the whole world was falling down around me. I just wanted to crawl into a hole and leave everything behind. I really wanted everything to just end. My marriage. My job. My mortgage. I wanted to take the money I’ve saved, get in my car, and keep driving till I didn’t recognize anything around me.
Start fresh. Leave all the overwhelming and inescapable responsibilities in my rear-view mirror. Literally. Stop it all. Just stop. And start fresh. Run away! Run away!
I knew I was tired… logically, I knew it. But the whole alexithymia thing was dragging on me (as it often does). I knew I’d had a highly interactive week. And I also knew that I had fallen behind in a lot of my work. But I was really unclear about how I was supposed to feel about that. Was I supposed to be proud of myself for making it through at all, or frustrated with myself for not doing everything I’d intended to? Was I supposed to be depressed because I didn’t live up to my promises, and I’m putting my team and projects at risk? I wasn’t clear about all the stuff I’d actually gotten right — it just felt like everything was wrong. Again, emotional confusion based on my physical state… bone-tired weariness….
And now I can’t find my power cord for my work laptop. That’s unfortunate. I’m working from home today, and I’ll need to plug in. For a while, at least.
Well, I always have my mobile phone to use in a pinch. I can do just about everything I need to do on that device. I’ll just be judicious with how I spend my power. And I’ll order a new power cord from facilities.
Or, I’ll drive to the office and get the cord I have there — no, come to think of it, I’m not doing that.
But I digress. I started out wanting to write about how an autistic life is a rigourous life, by its very nature. In my piece about how the autistic “medical model” makes me sick, I talk about how just because autism can be demanding — even depleting — that doesn’t make it wrong or disordered, in and of itself. It’s demanding, yes. But it also has a whole lot of advantages, and I wouldn’t trade it for the world.
Wanting to “cure” autism, in my mind, is like wanting to cure fair skinned people who live in sunny climates. Should “ginger” folks who burn at the slightest exposure to the sun be forced to expose themselves to sunlight without any skin protection so they can get used to the UV rays. That’s never going to work. We all know that. It’s just going to harm them. Burn them. Make them miserable. Possibly give them cancer, eventually.
Or another analogy: forcing kids who are allergic to nuts to eat peanuts, so they “get used to” them, and refusing to give them a shot to counteract the anaphylactic shock. That makes no sense. No parent in their right mind would do that to a child they love, and countless schools jump through all kinds of hoops to keep allergic kids away from nuts. But they won’t make accommodations for autistic kids who are suffering — often (like me, once upon a time) in silence.
“Exposure therapy” for autistic people is a ridiculous concept. And yet that’s what autistic people are expected to pursue — “suck it up” and just get used to the equivalent of burning sunlight on fair skin… or metaphorically eat a handful of peanuts (with no Epi-pen in sight), to acclimate their bodies to the substances that make them swell up in life-threatening ways.
It’s absolutely pointless. And it’s counter-productive in many ways. Accepting that an autistic life is an exceptional life, which requires greater rigour than the neurotypical mainstream way of life, is — to my mind — core and critical to understanding autism, in the first place. And that acceptance needs to happen on two fronts — 1) with the autistic individual (who probably already knows it), and 2) in the broader world outside, which has a lot to learn about how to A) stop hurting us, and 2) make the most of our talents and abilities.
See, it’s not easy accommodating us. It’s not easy getting accommodations in the first place. In my case, alexithymia keeps me from seeing and sensing clearly what I actually want and need. I literally do not know, at times, just what that is. And then I need to figure out how to express those wants/needs in a way that makes sense to neurotypical folks. It’s not easy. And I often just “bag it” — leave myself and my own wishes/needs out of the equation, so I can live my life more simply. Once I get what I ask for, I then need to navigate using it properly and managing the situation to make sure I’ve gotten it right. Hm. That’s certainly not easy! And I need to give feedback to people about whether I’m all set or not — yet another challenge.
For the rest of the world, it’s even more confusing. They don’t understand how I function, they don’t understand what I need or why I need it. And they often don’t know whether things are working as desired.
Fer-example: People I work with don’t understand why I sequester myself in my cubicle, more often than not. They think I should be socializing with them, chatting for extended periods of time about this, that ‘n’ the other thing. They don’t seem to understand why I wander off when I’m overwhelmed, and they don’t get why I sometimes chase them out of my cube. They don’t understand why I’m not a big fan of going to loud, busy bars after work to socialize and eat food I shouldn’t be eating, surrounded by people who are drinking things I dare not drink. I’ve tried to explain, but it falls on deaf ears. I’m in the minority. My job is to “catch up” with the rest and conform. For the sake of the team.
My boss seems particularly mystified by me, even though I’d bet good money on the chance he’s on the autism spectrum, himself. He’s got a very Aspie-fied approach to understanding people, and social interactions seems to be his #1 area of specialized focus. He makes the effort to include me, to get me involved in things, then he’s confused when I’m not all whoop-dee-doo! about participating in things like business trips to Las Vegas, or wading into receptions and social “mixers” with complete strangers.
The thing is — and this is what I think gets lost in the whole autism accommodations discussion — when I (and others) are provided the different circumstances we need, in order to be at my/our best, the results far, far outweigh the costs, in terms of overall value/expense. There’s a massive “ROI” on letting me (and others like me) function the way that best suits my/our autistic nature.
That’s why the general concept of “accommodations” kind of irritates me. It’s too disability oriented for my taste. It feels like it’s all about managing deficits, preventing meltdowns, and doing the equivalent of replacing all the divots on the golf course, so somebody else can play through without disruption. It feels to me like it’s too much about avoiding disaster, and not enough about making possible the amazing, remarkable, unique results we can provide… if we’re just allowed.
Yes, autistic folks DO have issues with environmental aspects that are best avoided/mitigated. Yes, we DO suffer terribly, when we’re not accommodated and we’re forced to “suck it up” and just power through. The thing is, when we live and operate in a world that is exactly the way we need it to be, amazing things can happen. I’m not just talking about inventions and discoveries and cultural creations that move the human race forward. I’m talking about an extraordinary quality of life and humanity that can emerge to widen the understanding of what it means to be human, what it means to have a soul.
There are plenty of autistic people who don’t seem to have any particular skill or talent that sets them apart from the neurotypical crowd. And those people have value, as well. The ones who have learning difficulties or disabilities. The ones whose IQ scores are lower than expected. The ones whose burning passion is a select class of inanimate objects that most people don’t give a second thought to. And then there are the ones who have no burning passion at all, who don’t know what they’re feeling about anything, who feel no joy or elation, who frankly don’t know why they’re even here. Those autistic people have value, too — in ways that very few people can understand, but still matter. Very much so.
Autism is by its very nature rigourous. And when you accept that, welcome it, even embrace it, you’ve got yourself a pretty interesting life, I have to say. For me, the rigour happens every day. And by the end of it all, I’m wiped. Just done. By the end of a work week, I sometimes don’t even know my own name or recognize myself in the mirror. But I pull myself together and keep going, regardless of whether or not I’m on good terms with my reflection.
Because there is work to do. And I choose to do it.
For today, I won’t withdraw all my savings from the bank, hop in my car, and drive away to leave it all behind. There’s a good chance I won’t do that tomorrow, either. Or the next day or the next day or the next… It’s enough to recognize that that’s what I’d absolutely love to do, because this life-ing stuff isn’t easy. It’s rough-and-tumble, and it hurts like hell, sometimes. But that’s the deal. Joy and pain. Sunshine and rain. It’s all part of it, and yeah, it’s worth the trouble. Every bit of it.
Autistic rigour. I wouldn’t have it any other way.
Education is all about teaching and learning. Well, it should be all about teaching and learning, however, for all teachers to teach and all learners to learn, it must also be about equality of access. From my perspective, as a member of The Autism Centre, equality of access, through the genuine inclusion of autistic students – which sometimes means adaptation, and sometimes means making reasonable adjustments under the Equality Act – always means that practice should be based on a good understanding – not necessarily of autism per se, but of how autism impacts on the student, within his or her own specific environment, at any given time.
But where is the starting point for all this understanding? What are the building blocks upon which to develop educators’ understanding, which might lead to good teaching and successful learning, and reduce risk of inequality for autistic learners?
Note: This piece is about me — and only me — it’s my deeply considered opinion, based on my own personal experience of inhabiting this planet for over half a century. You’re free to believe whatever you like about the true nature of autism. But this is my stance (right now). If you disagree, write a better blog post and tell me about it. 🙂
Lately, I’ve come across a number of bloggers talking about how autism is more than just a “difference” for them. It’s a genuine disability. They suffer from it. They have family members who appear to suffer intensely from it. Autism is the source of tremendous pain and struggle for them and their loved-ones, and there is no way they’re ever going to sanction autism as a “difference”. It’s too disruptive a force in their lives, for that to ever happen.
I also had a brief exchange with someone last week who actively embraces the idea of autism as a disability, and they align themselves with the disability rights movement. They have the best of intentions, I believe, and from a philosophical point of view, I can agree with the value in doing that.
There are a lot of autistic people who are disabled. There’s a whole lot they cannot do, and my never be able to do, because of their issues and traits. I know a handful of autistic folks who wouldn’t last a day in the working world I inhabit. I’ve also known some autistic folks who do extremely well in my work environment, but struggled terribly with other issues. Autism is no joking matter, when things are at their worst. I’ve been through the proverbial “wringer” many times, myself, and I have to continually make conscious choices for or against things, because of the effect I know they’ll have on me.
One day, I can be completely laid out by my issues. The next, those very same issues lift me to sublime heights. If I remove the causes of my pain, I remove the source of so much inspiration. It’s all a matter of degrees with me.
For the record, I don’t consider myself disabled. Yes, autism can be a disabling influence in my life, but its effects are temporary and mutable. It’s like being a sprinter who has to run a marathon, every single day of my life. My routine exhaustion and need to remove myself and recharge (lest I begin to implode from overwhelm and sensory overload) is conceptually no different for me than the results of a strenuous workout. Every day is strenuous for me. I’m constantly testing and pushing myself. Does that make me disabled? I don’t think so. It makes me different in ways that are more demanding than the average person experiences.
Is a thoroughbred racing horse disabled, because it can’t eat the same types of grains as other horses? Because it is so high-strung and hypersensitive that it develops inexplicable white spots on its legs? Is it disabled, because it’s temperamental and prone to outbursts? No. It’s a thoroughbred. It’s a unique and different kind of horse, and when it’s allowed to do what it does best, you’d never ask it to be anything different.
And I come back to it again, is autism itself THE disabling thing?
I’m not so sure. I mean, being autistic predisposes me to overwhelm, hyper-sensitive pain and discomfort, as well as the occasional meltdown/shutdown. Much like having fair skin predisposes you to getting sunburned, if you don’t use sunscreen. In the case of fair skin, the solution is not to change your skin, add more melatonin, or convince yourself the sunburn doesn’t really hurt. It’s to take steps to avoid sunburn.
And that’s where I see the medical model of autism going afoul of my autistic person. According to the medical model, autism itself (or in the above example, fair skin) is the root of the problem, and it needs to be eradicated. It’s a disorder. It’s a dysfunction. It’s an aberration that — for the sake of smoother functioning of society — needs to be changed in some way, if not gotten rid of entirely.
Classifying autism as a diagnosable disorder (and I’ll freely admit, the idea of diagnosis appeals to me, not because of the medical overtones, but because of the science — Science! – cue Thomas Dolby) makes it a “thing” that needs to be fixed, that needs to be addressed. It removes it from me, as a person, and turns it into the cognitive-behavioral equivalent of a tumor, a mass, a growth of some kind. Maybe the “mass” is benign, for the most part. Maybe it just causes occasional discomfort. Or maybe it impinges on nerves and causes me unspeakable pain. In any case, it’s something separate and apart from me that arises from a physical cause and is addressed as a distinct (but disposable) aspect of my life experience. According to modern medicine, this condition, this disorder can (and should) be treated.
The thing is, it’s all more complicated than that. Yes, my body is differently “tuned”. Yes, there are experiences that others take for granted, which are unbearable to me. Yes, there are many aspects of my life which are physiologically uncomfortable, even painful, and depending on my state of body and mind, those aspects may be more or less extreme. But is a physical/medical approach the one and only approach I should take, when it comes to managing my situation?
Is changing the essential makeup of fair skin the only way to avoid sunburn?
Obviously (to me, anyway), there’s more to it. There should be more to it. Because what parts of life are ever that simple? Few, if any.
There’s the whole environmental thing. And the whole social thing. And the whole accommodations thing. And the whole pro-active self-care thing. There’s me taking care of myself, and there’s having other people to help watch out for me. There’s my diet, there’s my exercise, there’s my social circle (or lack thereof). There’s my inner state, my outer circumstances, my interactions with the world around me… That all comes into play in an intricately interconnected dance, so that I cannot possibly ascribe to only the medical model as a way to explain and address my autistic experience(s).
It’s all very well and good to seek physiological explanations for why things are like they are with me. I tend to turn to biochemistry and neurobiology for explanations about why people behave like they do, and in some cases, they offer greater clarity. Certainly more quantifiable data.
But to look at those quantifiable data in and of themselves, with no connection to the outside world and the artificially created circumstances… that’s just asking for trouble.
Because then the problem originates in my system. It says there’s something wrong with ME, my physiology, my own personal context. It seems to absolve the outside world of any kind of credit or culpability and treats my system as a self-contained, hermetically sealed entity that has a mind of its own and does what it pleases… just ’cause it feels like messing with me.
To overlook the effects of environment, as well as human-made complications and challenges, does my physiology a disservice. It makes it sick. It makes ME sick. It makes us out to be disordered, in and of ourselves, rather than in relation to hostile circumstances.
Expecting me to just motor through life, carefree and happy-go-lucky, regardless of extenuating conditions is like, well, expecting a fair-skinned individual to walk across the Kalahari Desert without any cover-up or sunscreen, and not be sunburned. It’s like running a thoroughbred hard, putting them up wet, and then repeating the process again the next day — or that very same afternoon — and doing it again. And again.
So, that’s my “take” on the medical model, as it applies to me. I’m sure I’ve missed some important nuances, and I am probably over-simplifying things, here and there. Or maybe I haven’t, and I’m spot on, all across the board.
Bottom line: the medical model may work for some things. But my autistic nature and experience? Nope. Doesn’t do the job on its own.
And I’m sick and tired of being treated like I’m sick and it’s all my (and my autism’s) fault.
I wrote this yesterday morning, then my day got busy, and I had to get myself home. I’m home now – and very glad of it.
22 June, 2017
So, the trip has actually turned out okay in the end. This actually isn’t a surprise, because that’s always how it happens. The thing is, it’s so damned costly, in terms of energy, attention, peace of mind, etc.
I’d do this more often, but that’s like saying, “Oh, I’ll eat cheesecake for every meal!” or “I think I’ll spend every penny in my bank account on a regular basis — drain my coffers as soon as they start to fill up — and see how that works out.”
Short-term, it’s fun and exciting. Long-term, it’s absolutely brutal. And for the record, it makes no difference whether the expenditure is on something fun and uplifting, or something miserable and obligatory. It’s all expenditure. And now I’m looking at another couple of weeks of recovery… I just need to take it easy for the next while.
I’m glad I came, though. I made some good connections with actual peers. I work in pretty much of a bubble at work. Due to staffing cuts, I’m the only one in my “group” who does my kind of work. There are others who sorta kinda handle the same stuff I do, but I’m “an army of one” in my particular domain. It has its advantages, but it can also be isolating.
I’m running out of energy to keep writing, so I’ll leave it at that.
It was good to connect with others — and in my own very autistic way, actually. I had a few “bumpy” experiences at the start, and I began to feel down on myself about it. But I decided to ignore my sense of social failure — it could be wrong, after all, given my sometimes acute alexithymia which gets very confused about what’s really going on and how I’m really feeling.
In the end, it was a good idea to ignore my sense of social ineptitude, and just keep going. I ended up making some good connections, and I got some good information. And for that, I’m grateful.
Now I’m home again. And very grateful for that. Now, to get back to my regular routine, and my regular life.
I can feel the relief just about to break. This is the last day of my conference, and after 2 days of super-saturation — no, make that 3 — I’m more than ready to turn tail and run home. It’s Wednesday. The last day of this professional networking extravaganza. The last day of alternating between making the best of things and making a run for it.
Seriously, how do people do this? Oh, I know — they’re neurotypical. And they drink. That’s how they do it. I don’t qualify as either of those, so…
I’m too tired to elaborate.
Anyway, the whole thing is over by 2:00 today. Then I get to be myself. Sigh. I get to hang out with people who live here, wander around some of my old “haunts” (I used to live in this area, over 20 years ago), and see how things have changed. I’ll go for a long walk down at the waterfront. Have some dinner… Just enjoy myself. Then, tomorrow, I get to hang out with a friend whom I haven’t seen in something like 20 years. We used to be close. We used to work together a lot. It was a great time, but she’s here, and my partner and I are on the other side of the country, so…
Anyway, it’s just about time for breakfast. I nearly missed it yesterday, because I didn’t read the program schedule properly. I’ve been to plenty of these conferences, but for some reason I missed that whole breakfast thing. Not today. I’m hungry. I need fortification. And according to my internal clock, it’s nearly time for my lunch. So, better get a move on. Get my shower, get myself dressed, and head on over to the excitement.
I’m just so looking forward to this all being done. So, I can go back to my regular life and not have to worry about all this … stuff. Just to be able to relax, to not be “on” all the time, and chill out. Stim a bit. Talk to myself a bit. Wear the clothes that I want to wear, and be done with it. Just be done.
I have a little under half an hour, till I need to get on a conference call with my work. I’m traveling this week, with a user conference on the other side of the country – literally. My sleeping schedule is pretty much thrown off — for here, that is. My body is still keeping with the time zone it’s used to, so I’m waking up at 4:30 a.m. instead of 7:30. And I’m ready for bed by 8.
I haven’t been doing a very good job of getting to bed by 8, but at least I haven’t gone much past 10:00. That’s some victory. I’m pretty much resigned to the fact of being “dog tired” all this week, and I’m living accordingly. Not expecting much of myself in loud and busy situations, not expecting myself to be able to sustain attention for more than an hour at a time.
Yesterday I was in an all-day training which wasn’t very well designed. So, it was hard to pay attention, especially during 2-hour blocks of time. I kept losing my place, then catching up… spikes and troughs, peaks and valleys. Just like me. Plus, my boss was messaging me during some of the presentation, so my attention was divided several times. By the end of the day, I was wiped out.
But (of course) they had a reception at the end of the day. Two hours of milling around with people who were drinking and becoming progressively louder. Incredibly awkward. For me, anyway. I can’t stand those kinds of things, but to me, it’s obligatory, because that’s where people are “relaxed” (after getting a few drinks in them), so they feel more comfortable opening up.
Not a good use of time for me. Pure obligation. I was so… challenged, last night. I was tired. So, so tired. Overwhelmed. Super-saturated. Couldn’t hear properly. Couldn’t talk smoothly. Couldn’t interact the way I wanted to. I worked overtime to compensate with my deliberate (feigned) curiosity about other people’s lives, got stuck in a fewe extended monologues on things that mattered to me (of course they were fascinating! 😉 ), and mumbling and bumbling when put on the spot. I seriously cannot put words together when I’m tired, can’t hear, and a group of people (who were seamlessly talking about themselves and their lives just a minute before) turn to me and say, “What about you?”
Ugh. It’s just not my skill. Sometimes I can do it, other times not. Last night, I couldn’t. Oh, well.
I was supposed to go to dinner with a “select group” of attendees who were hand-picked to talk about some special aspect of this special technology. And I was totally going to go. I had agreed to go, so my system told me, Go. When you commit to something — especially when you’ve accepted a gift that’s kind of an honor — you follow through. So, I was going to do the right thing and stick with my Plan.
But when I got back to my room to wash up and change, I thought, “What the hell am I thinking? I can’t deal with those people now! Especially after they’ve had a few drinks in them.” People tend to get louder, when they’re drinking, and my hearing was not up to par. I felt like I was swimming under water, and everything around me was muffled, dampened, without clear, distinguishable sounds. Plus, when I can’t hear, I have to get close to people to distinguish their words, and that either makes them uncomfortable, or it gives them “the wrong idea” and they seem to think I’m interested in them. When I’m listening intently, I can be very interactive, and I’ve noticed that with me, it elicits an uncomfortable “vibe”, and with women, they seem to draw away from me.
I don’t mean anything by it. I’m just trying to hear what they’re saying and understand what they mean. I’m not looking for a date. But apparently, that’s what people do on business trips? I’ve heard about something like that… Not me, though. Nope. No thanks. Infidelity is not for me.
So, instead of going to dinner with the crowd, I went to dinner by myself. It was very nice. I got to a restaurant that a friend recommended. And I’m going to leave my options open tonight, in terms of what I do. There’s a customer appreciation event after the conference today, so I’ll go for a little while. But I can’t stay late. I’ll set some alarms for myself, so I look like I’m getting a message or a text. Then I can excuse myself. And retreat.
I don’t expect to be as wiped out tonight as I was yesterday, though. Today and tomorrow, the conference will be at a pace I’m more comfortable with — a keynote opening with speakers selling an hour-long burst of information download, followed by a short break to catch my breath, then another info download, a break, more info… lunch… more info… break… more info… then the event.
After tonight, I’m “off the hook” for all that socializing. The conference ends tomorrow afternoon, then I’m staying in town till Thursday, so I can catch up with friends I haven’t seen in 20-some years. Fun! And it’s my pace.
So, in the grand scheme of things, everybody gets their “piece” of my energy and attention. The event itself, the people I’m with, the dynamics we have, and me. Last but certainly not least — me.
I’ve been doing a lot of thinking about how my dreams and ambitions have really suffered and been stunted, because I’ve felt compelled to pursue them along neurotypical lines. I’ve somehow believed that if I followed “the rules” — of engagement, of customary behavior, of social interactions, of the right job or locale — that things would come together for me, and I would be able to follow my dreams as naturally as everyone else outside the autism spectrum follows theirs.
I thought I could go to college, and everything would be fine. I thought I could get a regular job and things would sort themselves out. I believed that if I moved into a certain neighborhood in a certain town, that would confer certain advantages upon me. I was convinced that if I just did a great impression of others, I could connect with them and find a sense of belonging. My family (bless their Aspie hearts) raised me with a strict set of guidelines that were supposedly guaranteed to provide me with a sense of community and connectedness. If you live in their world and do precisely as you’re told, it works. I’ve seen it work for countless people I grew up with, including my family.
Except… I don’t live there, anymore. I never wanted to live there, in the first place. Their Aspie-ness is diametrically opposed to my own rendition. What is life for them, is death for me. We may all be on the spectrum, but I don’t inhabit their quadrant. And the things that bring me to life, really dampen theirs. So, I’ve had to move on.
But I’ve still carried this Aspie-fied devotion to figuring out HowThingsWork and then following that set of specifications to a “T”, in hopes of achieving the expected results in the neurotypical world I now frequent. It hasn’t worked nearly as well for me, as it has for others. In short, I’ve often lost sight of my autistic nature, and that’s limited me. It hasn’t provided me the kind of options and opportunities that non-autistic others have found. What works in one situation with a select group of people, doesn’t necessarily work for me.
Yes, I’ve overlooked myself. I’ve ignored my own individual ways and needs. I’ve discounted my own individual inclinations. And I haven’t made the most of my own individual proclivities. And yes, I’ve neglected developing my own individual skills and talents, which are nowhere near the radar of the NT world.
There’s a whole lot of me that isn’t acknowledged by the neurotypical world, including:
Extreme Empathy — which is so intense that it causes me to co-experience the full range of emotions of everyone around me, including (especially) the negative ones. That impassive presentation everyone sees… it’s a direct response to the emotional upheaval of my milieu. Somebody has to keep calm in the chaos and the storm. I can’t rely on anyone else to do it, so that role falls to me.
Profound Productivity — which lets me accomplish more in a weekend than most “regular” people do in a month. Or a year. I can’t even tell most people all the things I do with myself on a regular basis, because they become alarmed at how much I’m “taking on”. It’s not “taking” anything on. It’s simply letting myself be what and how and who I am. I flow. My work flows. The words flow. That’s how I roll.
Experience like they wouldn’t believe. Seriously, nobody outside the autism spectrum is gonna have a clue just how much experience I’ve accumulated over the years… what kind of experience I’ve had… what I’ve survived… what I’ve created… what I’ve incorporated into my world view. I’m not alone in that. Countless other autistics have done as much as me — and more. And what we assimilate isn’t this 2-dimensional mind-driven experience of the neurotypical world. It’s a full-spectrum, body-mind-heart-spirit inundation in the world of What It Means To Be Human. We have capacity for it. We take it in. Some of us can handle it, others can’t. But for autistic people like me, it’s inescapable.
Resilience, resilience, resilience. To the point where I can sufficiently “self-heal” from a devastating, debilitating meltdown to be reasonably functional in a matter of days. Yeah, I still feel the effects of it, and I’m still shaky for weeks after, but it doesn’t stop me from living my life. No how, no way. I’ve been roughed up and trampled and put through the proverbial wringer for 52 years, now, and it’s taught me a thing or two about how to take care of myself. If I hadn’t figured that out, I wouldn’t still be here. You’re reading this, so I’m still here (by god). And I will continue to be here for the long term.
Pain tolerance / indifference of many kinds. “Life is pain! Get used to it!” said Geena Davis’s character in the movie “Long Kiss Goodnight”. And it’s true. My life is chock-full of pain… not that it’s going to stop me. Pain schmain. Life isn’t waiting for me to feel better. It’s not going to pause for me to climb on its metaphorical merry-go-round. Physical pain. Emotional pain. Spiritual pain. Mental pain. Just living in the NT-centric world is an exercise in extreme discomfort. It can be debilitating. It’s definitely disabling. And at the same time that I’ve learned how to handle the pain, I’ve learned how to negotiate my way out of it…. to create a separate space for myself, where I can simply be. See the next point:
Independence of mind, spirit, body. I’m on my own — and as an autistic adult, that’s precisely how I like it. Autism is Self-ism. I know there are people out there who would like to help me. They offer. One of them offered just yesterday. But honestly, it’s pretty stressful trying to communicate with them… to express my needs in ways that they can actually understand and act on. Ultimately, it becomes more frustrating than anything else. Managing others is just one more thing I have to do. And I don’t enjoy it. I’d much rather handle things on my own, thank you very much.
To the non-autistics in my current world, those skills / traits / qualities / talents don’t even exist. According to them, they can’t. Because they don’t conform to their way of experiencing things. By allistic standards, they’re often considered pathological. And that attitude gets a little tiring. Because nothing could be farther from the truth. Seriously. Nothing.
Thank God I’m autistic. Praise be.
Because all the things that the neurotypical world considers liabilities are extreme strengths with me. And my sh*tty experiences with non-autistic folks have taught me loads about how to just be true to myself. It’s been a master class in just walking away from a losing proposition and creating a separate reality for myself. I’ve always done that. I always will. So long as there are people who A) don’t understand me and B) feel the need to punish me for not being transparent / energetically available to them, I’ll keep my own interior space well-organized, clean, tidy, and extremely well-appointed. Like so:
I bought myself a new bookcase last month. This month I’m rearranging my study, so I have a proper retreat that suits me ideally.
I’m not driving in to the office today. I need the extra hour I’ll save by not doing that, to take care of myself and tend to my own interests. I also need a break from their needy dramas.
I’m getting some extra rest today, along with getting a massage this evening.
I’m cooking my favorite meal, tonight, letting it stew in its savory goodness that feeds my soul as much as my body.
I’m spending more time working on my book about an extremely autistic hyper-sensory day.
I’m dropping some of my near-future plans, because they would demand more time, energy, and money than I’m prepared to spend… and the payoff wouldn’t necessarily justify the expenses.
I’m widening my inner world, and relishing the pace and the flow that is mine, and mine alone.
All these things are mine. Truly mine. There’s much more, but I’m bumping up against my personal blog post limit, and I need to move on to other things. To be truly autistic, in my mind, is to be truly myself, to relish the strengths I have, the abilities I possess, and to make the most of every . danged . thing . that makes me the person I am. The autist I am. The supreme exemplar of me-ness that I can (and should) be.
In the face of a world that attacks what it doesn’t understand and punishes those who step outside their norms, I have a choice. I don’t have to conform. No way, no how. I can step away. I can create my own space. I can follow my own dreams, cultivate my own skills and abilities in ways that no neurotypical institution can recognize, let alone serve.
I can be true to myself, no matter what the rest of the world thinks or does.
That’s my right. Frankly, it’s my obligation. To do less would be such a waste.
There’s been some good conversation going on over at Twitter about diagnosis and support for “late-diagnosed” autistic adults. Lots of us get assessments / diagnoses after years and years of confusion and struggle… and then we’re turned loose in the world without any reliable supports.
This seems particularly true in the UK, where you can get an official diagnosis without draining your retirement fund and putting your life in danger (by spending thousands of dollars you actually need to survive – as happens here in the States). Granted, it can take months, even years, but it’s available via the NHS. The problem is, apparently there’s not a whole lot of support there for newly diagnosed adults. You can get a diagnosis, and there seems to be less stigma around being autistic, but you can’t get much support after the fact.
In the USA, things are different. Diagnosis is fraught with all kinds of very real practical considerations and dangers. Getting officially diagnosed can marginalize you and make it hard to get (and keep) a good-paying job. Plus, it can make you a liability to your employer, which may be obligated by law to extend certain accommodations to you and incur more expense. So, if they’re deciding whom to employ based on their return on their investment in you, an autism diagnosis is going to reduce their return on you and can work against you in subtle ways.
Once you get diagnosed here in the States, there also aren’t a lot of uniform supports in place. There are organizations that provide some support in some regions, MeetUps we can attend, special interest groups we can participate in, and of course there’s the Internet. Facebook. Twitter. But as for standards of care? Hmmm. Don’t seem to be any. Especially for healthcare providers, who just amaze me with how little they seem to actually know about dealing with us.
I’m working with a clinician (for a variety of behavioral health and life logistics issues) who’s very “medical model” and very deficit-oriented. Her attitude fluctuates from pity to a genuine desire to be helpful. She has a good heart, but honestly, her demeanor is frequently annoying to me. The way she approaches my issues… very deficit-oriented, very focused on fixing what’s wrong with me. And all the while, it feels like I’m a subject of her study, the object of her intention to make things better… for me.
Now, the thing that complicates our working relationship is the absence of discussions about autism. For personal and professional reasons, I don’t want that anywhere on my medical records. I just don’t. There’s too much misinformation about this, too much bias, too much prejudice. I’m a queer woman on limited financial means making my way in a world that would love to kick my ass. No way am I martyring myself for any cause by betting on the capacity of complete (neurotypical) strangers to judge me on my merits. Hahahaha. Yah. No thanks.
Anyway, an autism diagnosis shouldn’t matter in my work with her. Why? Because I think there’s a better way to assist people with “spiky” ability/challenge profiles, and that way doesn’t need to be tied to the tired old American A$ definition of autism, in order to be helpful.
At the same time, the approach I’m envisioning is every bit Autistic as I am. And while it can apply to others with spiky challenge profiles all across the board, I think it can be particularly helpful for Autistic folks. And in fact, I had been using it, practicing it, refining it for something like eight (8) years with the clinician I was working with before the current one. And it’s worked extremely well in helping me manage my issues and gain more agency in my life. It’s helped me work through a lot of autistic issues in my life, and it’s proven effective even in the face of a totally clueless clinician who honestly didn’t know what they were looking at.
Okay, so what’s this magic formula I discovered?
I call it “Dynamic Skills Mapping” (or DSM — hahahahaha!how ironic! love it – let’s take back that acronym, shall we?) — understanding my areas of strength, having a good grasp of my areas of weakness, and then figuring out how to use my strengths to deal with my relative weaknesses.
Ferinstance: My short term working memory is terrible. I will literally forget what people say to me just 2 minutes later, if I’m interrupted. This makes it hard to have a conversation, and I’ve struggled for years with being able to talk to people. I’d just get lost in the middle of conversations and end up faking my way through the interaction without any clue what we were talking about. People thought I “got” what they were saying to me. But honestly, I’d get to the end of an interaction, and I’d have no clue what just happened. It’s actually easier to get through life like that, than you’d think. And nobody outside of me seemed to realize. At all.
So, yeah, it was a problem, and I knew it. But I had a hidden advantage — strengths I’d built up were available to put to good use in my own individual ways. All that faking and interactive practicing had trained me to follow the “flow” of a social interaction. And I am hypersensitive to others’ “energies”, which helps me respond to their shifting moods (even if I don’t immediately understand them).
So, to keep myself engaged in conversations and keep the meaning of the discussion fresh in my mind, I started interspersing my conversations with queries and questions to get clarification on things.As people talk to me about things, I practice what’s called “active listening”, where I’d repeat back to them what they said to make sure I was getting it right. Sometimes I’d phrase it wrong, so they could correct me. They were a lot less offended by that, than I thought they’d be. They didn’t seem to mind correcting me at all — it meant that I was actually listening to them, interacting, paying attention to them (which is really what mattered to them).
This “step-wise flow” created conceptual “hand-holds” in the conversational flow, which I could use to keep myself engaged and still aware. And I was much more involved in social interactions than I’d been, pretty much my whole life.
Don’t get me wrong — there are still times when I just don’t have the capacity for in-depth social interactions. And this whole interacting business doesn’t come naturally to me. But do I have to talk to people for my job and in my home life, so changing my approach to conversing with them, using skills I’ve developed over the years, has helped me to overcome the most pernicious, debilitating aspects of my interpersonal disconnectedness.
That’s one example. There are many more.
Using my visuospatial skills to see how things can be fixed.
Using a combination of my sensory extremes and my devotion to routine to remember important things and create more flow in my life.
Using technology (spreadsheets, programs I’ve written, various devices, the web, etc.) to both soothe/stim as well as better understand and manage my life… and experience radiating bliss on a regular basis.
Using my bullheaded persistence to teach myself to juggle (3 balls, that’s it, but it’s enough), and regulate my emotional volatility.
Focusing on the areas where I’m blazingly smart, in those times when I’m feeling stupid and overwhelmed, to logically convince myself that I’m not a complete idiot and waste of space.
Leveraging my passion for research (and my ability to find just about any piece of information I need – if it exists) to teach myself about alexithymia and realize that much of my sense of worthlessness is physiological in origin, not based in actual fact.
Using my intense focus and delight in certain areas of research to “tune out” the pain of my perpetual sensory overload.
Using my zealous devotion to routine to build healthy habits and make the important eating and exercising changes I needed to create.
Finding professionals with specific areas of specialty which could be transferred to an autistic context, and using their services to address issues at the core, rather than calling them out as “autistic” and being subjected to their gross ignorance and negligence — basically, leveraging their strengths, while minimizing the damage they could do.
Fundamentally — bottom line — this “DSM” approach is about
Recognizing my strengths, putting together an inventory of my abilities,
Being honest about my deficits and difficulties (also documenting them), and
Matching my strengths to the challenges I’m up against.
Key ingredient: I have to be totally honest with myself about my relative weaknesses, and not tell myself that all is well, when I’m really struggling — but also not wallow in it (poor me!), and take constructive action, using my well-documented strengths.
When it comes to helping other Autistic folks with their issues, I think this kind of approach can be very productive. Although each of us is unique with our own spiky profile, we still do have that commonality of spiky traits. Why not inventory our amazing strengths and then “map” them to the challenges we face?
Taking a strengths-mapping approach could go a long way towards:
De-pathologizing our traits and profiles,
Either making the medical model obsolete or expanding it to include the good along with the ostensibly “bad”,
Making support about more than focusing on all the sh*t that’s wrong with us,
Making the most of our strengths — even strengthening and deepening them, and
Taking advantage of our Autistic tendency to extremes. That’s not a bad thing; we can be extremely successful, not just extremely “put upon” by the rest of the world.
We have a whole lot of advantages, by right of being Autistic. Why not make the most of them, in our own individual, dynamic way(s)? Why not turn the tables and invest a whole lot of time and energy in exploring the ways in which we’re fantastic, rather than marinating in our shortcomings?
Imagine how we’d feel if we all did that on a regular basis. It could work.
My 52nd birthday is coming in a couple of weeks. I never used to pay it any mind – in fact, I hated to pay any attention to it, at all. It was just another day to me. Just another reason for people to torture me with surprises and constantly bombard me with “well wishes” for a day that I never asked to be born on.
It sounds a little grim, but that’s my outlook usually is, around this time of year. I didn’t ask to be born into a world that cares nothing about me, that doesn’t know me, that doesn’t care about the same things I care about, that is so unbelievably cruel and stupid and has no problem being that way, day in and day out. Even the people who are supposed to be “helpers” are unbelievably cruel in their ignorant stupidity, their hubris and arrogance leading us all straight to hell.
Fck them. Fck the world that would just as soon see me dead. Fck the employers of the world who suck the life out of everyone they fool into working for them. Fck the people who fck everything up and don’t give a sht about it. And f*ck the people who want to cut those people a break, because they’re “just human”. Those dangerous jokers have made a mess of things, and they need to be held accountable, not given a pass because somebody either A) wants to humanize them to ease the existential burn, or B) hopes to join their ranks, someday.
Collusion. I’m so tired of collusion. Excuses.
Yep. This time of year is pretty dismal for me. Grim. Because yet another year has passed, and it’s all the same sh*t as last year, same old pains, same old suffering, same old dramas that suck the joy out of every breath. The pain never goes away completely. It just moves around. It’s boring in its predictable unpredictability.
And here I am… a little farther down the road, not feeling as though I’ve actually accomplished anything of objective value. Still working job that pays the bills and has some interesting aspects to it, but is pretty much a dead end and doesn’t lead anywhere I want to go.
On the other hand, I’ve had a pretty productive blogging year. I’m not sure why I have such a hard time assigning objective value to the things I create. In the past year, I’ve written a whole truckload of blog posts, and some of them have been pretty good according to others as well as my own estimation. Other posts, not so much, but output variability is the price you pay for greatness, I s’ppose 😉
Maybe the valuation part is because I’m not earning any money at this writing, for all the work I put into it. Don’t get me wrong – I don’t believe that money is the only measure of value for things I write. But for all the effort I put into it, an “emotional paycheck” is not the only thing I want to get out of it. It’s at a point, where I need to do better than that. I need to do more. And the writing really needs to start supporting itself.
It’s like I’m a single parent and my writing is a 20-something just out of university who’s been hanging around the house, eating all the food, taking up space, adding to the laundry loads, and not making an effort to go out and get a job. It’s unsustainable. It really is.
So, what do I do about it? What indeed?
Well, I have a handful of options.
There’s my Patreon, of course. I started it, nearly a year ago, with the best of intentions. But I just haven’t kept up with it. I haven’t been able to square the need for free #ActuallyAutistic writing with “the money thing”. I really, truly believe that we need to make writing by autistic folks accessible to the wider world. Our voices, our stories, need to be out there. And not everyone has the money to regularly support writers — especially folks who are over-extended by their efforts to deal with autistic difficulties. We can be “underemployed”, underpaid, and generally short on cash, and we need to lower the barriers to sharing our stories.
At the same time, I also believe it’s critically important that we as an Autistic community place a larger value on our work. We shouldn’t just give it all away for free. Countless scholarly journals charge $35/paper, or hundreds of dollars for a years’s subscription, lots of them earning a whole lotta cash off studies of our existence. It’s the most blatant example of rank social and economic injustice. And funding is constantly going to research institutions that are locked onto the target of eradicating people like me from the planet.
We have to change how we move our money around. We have to change who gets money, and why. I’m willing (and eager) to devote my life — yes, my life — to the documentation and analysis of the Autistic experience, explaining a whole lot that baffles the world, especially with regard to women and girls on the spectrum. But I can’t do that, if I can’t pay my mortgage. I can’t do that, if I go hungry and can’t provide for myself and my partner and take care of the other people in my life who need taking care of.
That all beings said, I’m changing how I handle my posts on this blog. My new policy is to post here for free — for a week. And then move the posts over to Patreon, behind a modest paywall. A minimum of $1/month will get you access to all my posts. You can pay more, if it’s worth it to you. That’s always welcome! I’ll figure out some other pay level schemes to offer (including thematically grouped and lightly edited collections of posts, personal chat sessions with me — especially for researchers who would like to discuss aspects of autistic life with me, and other offerings I have yet to think of).
Another option is to publish selections of my work (in eBook and print book) format, and make it more widely available for a small charge on Amazon.com and other online outlets. That’s actually a pretty easy thing for me to do. I’ve been publishing, myself, for years. And I can offer the pieces at different prices and in different formats. This could work. I love to format documents and publish them out, and it’s my hope that others will get even more out of it, than they would on this site.
And then there’s simplifying my blogging. I have a bad habit of starting new things on a whim, thinking I can commit to them, and then realizing after a week that it’s never going to work. I’ve started more blogs over the years than I care to think of, and only two of them have stood the test of time. I’ve done it with Tip of My Aspergers (no, I’m not linking to it), and like so many other blogs I’ve started, it petered out, because the theme I was so passionate about, several months ago, has melded into the overall landscape of my life, no longer a distinct blog with its own presence. The posts I’ll move over here. And leave it at that. So I have fewer things to think about and process, when I sit down to WordPress each morning.
Focus is good. I need more of it. Too much on my head, too much that’s confusing, too much that demands my processing… well, that just drags me down, and then I end up staying in a persistent state of borderline meltdown for days on end. Sometimes weeks.
So, yeah, this is it. Time to channel that “F*ck You” attitude into something constructive, and see where that takes me. It’s no good, letting it “back up” on me and make me miserable. My birthday is coming. I can’t just let it arrive, without having done something substantive to move myself in the direction I need to go.
It’s gonna take me a while to move all my posts over to Patreon, as well as publish out the pieces I deem Amazon-worthy. But it’s a great direction for my energy.