I’ve been told, a few times over the course of my life, that I have a little bit of scoliosis. It never meant much to me, till I saw a recent x-ray of my back. See above.
It’s not so terrible – I’ve seen worse cases when searching the web. Still, it’s a little unnerving to actually see it. Having a visual is a lot more meaningful than being told about it by people who didn’t have much to say about it.
Either that, or they tried to talk to me about it, and I wasn’t following — because we were in a medical situation and I was overwhelmed by the circumstances, or I just didn’t connect the proverbial dots and know how to follow up to discuss it.
That’s the problem with me and doctors / other healthcare providers. The conversations tend to progress quickly and cryptically, and I don’t follow exactly what they’re saying because, well, medical terminology… and me not knowing when or how or why I should ask questions. And by the time I figure it out, the window has closed, the opportunity has passed. So, I go on with my life, making the best of things, without actually having all the information I need.
Because buried in there… somewhere… is additional data I didn’t get a chance to follow up on.
Well, be that as it may, it doesn’t stop me from following up afterwards. And so I do. It looks like my scoliosis is not so, so terrible, and I might be able to address the issue with some stretching. That’s not going to make my bones straighten up, but it can improve my circulation and muscle tone. Also important — keeping my upper body strength, so I don’t get pulled to one side all the time.
Come to think of it — hey! eureka! — I have issues with the left side of my body being tighter. If the curve bends my spine farther to the right, it looks like it’s pulling my left side down, which is consistent with my experience — I’ve had real problems with my left shoulder and neck being so, so tight. And I can’t seem to get them to loosen up. Well, yuh… if my spine is literally pulling them down, it’s gonna be a little hard to get them to loosen up.
Unless, of course, I take extra measures. Maybe I can help myself, to at least some degree. That’s what I need to find out… That’s what I need to try.
It’s been a pretty low-key week for me. I made the mistake of going on Twitter last Monday, and I got caught up in a roiling, churning mass of conflict that ended up in me muting a handful of people I used to follow, but who had become pretty aggressive and dismissive in their attitudes towards people like me.
Yeah, no thanks. I really don’t need to be told I don’t deserve full respect and consideration — not to mention the benefit of the doubt — by people who share my neurotype. To say I was disappointed, would be an understatement. I just couldn’t believe that people who base much of their online identity on measurable difficulties with socialization and communication and (ahem) empathy, would just say whatever came to mind without realizing that their self-proclaimed limitations were in full-swing… and act accordingly. And as for folks who know as a matter of fact that autistic people are intensely sensitive… but still press ahead with hurtful, exclusionary statements (which are obviously opinions) as though they were God’s Truth… I just can’t even…
The net effect was that I went underground. Not literally, though I wish I could have. I just pulled back. Stayed out of interactions on Twitter. Muted more people. Expanded my social filter settings to screen out the virtual screaming. And went about my life.
Things haven’t been all that great with me, over the past weeks. I’ve been through a number of upheavals at work and at home, and not getting to go to my nephew’s wedding in 3 weeks is really bothering me. There’s no way I can make the trip down to Baltimore in mid-August (August!), deal with the whole loud crowd of my family, the unfamiliarity of the situation, the social requirements, the logistics around travel and making sure my partner is okay while I’m away. She can’t make the trip, herself — mobility issues, not to mention the overwhelm for her, as well. It just all feels so overly demanding.
And then there’s the conflict around my nephew’s own spectrum-y self. He struggles with many of the things that I do, but I can never seem to get through to him. He seems to be afraid of me. And yeah, I have been a scary person in the past — especially when growing up. His mom (my sister) still has a ton of issues towards me. Old resentments, hatred, conflicts about any number of things I said, did, or simply was, while we were growing up. Her eldest two kids (who seem pretty spectrum-y to me) seem to have inherited a lot of those issues towards me. And they’re either standoffish towards me, or they take me to task.
Everybody in my family seems to enjoy taking me to task. They seem to think I do the “boneheaded” things I do on purpose. Not much tolerance or leeway there. But then… Aspies. With their black-and-white thinking. And God help you, if you stray outside their range of acceptable thought/behavior… which I constantly do. They still criticize me for not finishing college, even though they actually contributed to the issues that overloaded me and sent me into an agoraphobic tailspin for years after I had to leave university. As far as they’re concerned, I’m just lazy. Defiant.
All around me, it seems like people are just living their lives, getting on with things, living up to their potential. And the best I can manage is getting up each day, going to work, keeping up with my responsibilities, and being reasonably effective at the limited range of things I do. I looked into going back to school, a few months back, and it looked promising. Do-able. Even affordable (because my work offers tuition reimbursement). But when I thought honestly about it, the idea of being locked into a certain course, being forced to take courses at a pre-established pace, in a pre-established order… and not having any leeway in terms of taking a break or getting some space to regroup (once you start, you can’t stop for 2-1/2 years)… it just wasn’t possible. From one week to the next, I never know how I’m going to feel, and with all the real-world responsibilities on me — working full-time, caring for a dependent spouse, being a member of a town board, taking care of the house, helping with a variety of extra activities, and taking care of myself with my requisite activities that soothe and center me — there’s just no way I’d have the energy or the resources to add part-time school to the mix.
I will say, though, that it hasn’t been completely dismal for me. There have been some bright spots. I’ve been reading more, lately. Writing more, too. Studying and checking out (free) online courses I can take. For the sheer love of learning. At my own pace. I’ve got some new foci for my intense areas of specialization, and that’s good.
At least I have that.
Well, not “at least”… actually, it’s pretty awesome, these “new” interests, which are really rekindling of old interests. Anatomy. Lots of anatomy. Cellular, too. And biochemistry. For someone who never finished university (four years, but no degree), I know a sh*t-ton about this stuff. Autonomic nervous system. Nervous system in general. It might not do me much good, academically, but it sure comes in handy in everyday life. Just knowing the difference between fear and anxiety has been a huge help for me.
And that’s what it all comes down to. Helping myself. Because others can’t. I’m pretty much beyond help from others, as far as I’m concerned. My needs and difficulties don’t “synch” with others’ expectations of me. I’m slow where others are fast, and blazing fast where others are slow. So, color me out of place. Perpetually. I’m “sub-clinical” when I’m in decent shape. And when I’m struggling, I often feel like such a disappointment to others (who expect me to be “high functioning”) that they just punish me for showing my vulnerability.
Yeah, I’m pretty much beyond help, in terms of other PNT (predominant neurotype) people. The mainstream has no clue what to do with me, aside from blaming and shaming me. So, never mind them. Life’s too short to spend hassling over those folks. I can help myself. In some really significant and meaningful ways.
That’s what I’m dong, these days. Helping myself. Digging into the things I love with all my heart, without getting bent out of shape over not being able to do them more often (or professionally). I’m still not happy about not getting to do the things I really want to do… weddings, university courses, etc… and I shed my share of tears over them. But that shouldn’t stop me from doing — and loving — the things I can do… sequestering myself with my anatomy atlases and researching furiously online … at my own pace, on my own time, in my own way.
It’s not all good, but enough of it is, to make it well worth it.
Well, that was exciting. I guess. Over the past couple of days, yet another drama scene erupted on Twitter with people arguing about whether self-diagnosis is valid for autistics.
I mean, seriously, this is such a poor use of time.
Not because affirming the validity of others’ identity is pointless. Rather, because getting all spun up over it is. When we get all worked up with fight-flight responses, our ability to think clearly leaves the building. That’s how we’re built. It’s not even a thing you can dispute. It happens. Higher reasoning gets switched off by forces beyond our control — which kick in prior to conscious thought. By the time our systems have figured out that it’s happening, it’s already been done.
And we’ve probably said or done something we wouldn’t have done otherwise. If we’d had our wits about us and had taken a deep breath and gotten our sympathetic nervous systems calmed down, the tone policing wouldn’t have happened. The swears wouldn’t have unleashed. The accusations (some of them pretty accurate, but not the most kind) wouldn’t have flown.
And the argument might have remained a civil discussion.
Not yesterday, tho’. Nope. Not at all.
As a result, I muted a handful of people whom I’ve followed for quite some time. I didn’t block them, just muted them. Needed a break. Needed to not have to listen to them impose their versions of things on me, as though their version is the only thing that matters. I tried reasoning. And that got me nowhere.
Because they’d already been hijacked, I’m thinkin’. They weren’t even there anymore — just a bundle of reactions and an overwhelming need to own the Whole Truth About Autism.
Which brings me to thinking about community. People seem to think that community is a warm-fuzzy-accepting place, where you’re accepted for who you are. Especially autistic community. After all, we’ve wandered — some of us for years, even decades — in search of our kind, our tribe. And when we find others like us, it’s a huge relief. We feel like we’re home. The “honeymoon” commences.
Then the community shows up.
And it’s not pretty.
For the record, I was raised in community — not a commune or kibbutz, but a community of faith and subculture that was tight-knit and well-defined and highly cohesive over generations. To this day, I know that if I ever fall on hard times, I can always — always — look to that community for help and assistance. Because we’re connected in profound, enduring ways that have withstood the ravages of centuries of religious persecution and opposition from the rest of the “world”. Those connections involve a whole lot of extended blood ties, as well as regular participation in shared activities. Church services. Family reunions. Weddings. Funerals. Baptisms. Holiness retreats. Potlucks. I’ve eaten more sloppy joes, coleslaw, and baked creamed corn than I care to think about. And I can toss a mean horseshoe.
I’ve also born the brunt of constant social violence, my entire life in that community. Continuous demands and requirements were forced on me, as a regular part of being part of the community. A lot of it was to enforce the appearance of neurotypicality — wear the right clothing, interact in the right ways, participate in the right activities, have the right interests, talk about the right things. I’m not putting the word “right” in quotes, because within that context, those were the right things. Everything other than the standard-issue, community-approved attire, behavior, activities, interests… those things were threats to the connection I had to everyone around me.
And they were not allowed.
If you did not comply, you were Out. And I mean Out. A lot of people left, over the years. I was one of those who split as soon as I could do so safely. I quit going to church regularly at 16. And once away at university when I was 18, I don’t think I went back… for years. I even broke from my family of origin for a number of years, just to get my bearings in the world. Community life had done its best to suck the independence and authenticity out of me, and when it didn’t succeed, it was vicious. Brutal. And not only to me, but to my extended family, as well.
When you live in that kind of community, if you screw up, your parents suffer as a result. And your siblings. And your aunts and uncles, your cousins, your grandparents. Anybody in your life who didn’t manage to steer you back to the straight-and-narrow was charged as an accessory to the crime of your “waywardness”. Everybody hoped, of course, you’d come home like that prodigal son. But in the meantime, if you weren’t around to pay for your sins, someone else would be made to pay.
So, when I hear people lauding the idea of autistic community, I have to smile. It’s a crooked, sideways smile that doesn’t reach the whole way across my face. Because to me, community doesn’t imply the same things it apparently does to others. And I wonder if people are genuinely aware of what’s truly required for community to thrive and survive? It’s not just about bringing people in and accepting them. It’s also about keeping certain types of people (and behavior) out, and establishing what’s not acceptable under any circumstances.
Community can be brutal. There’s just no two ways about it. And if we’re to truly build a new type of connection with others in an ever-expanding network of support for our autistic kin, we need to face that fact — and decide what we’re going to do about it.
Personally, I think we can use our autistic minds and perspectives to build something very different from the type of “neurotypical holodeck” I grew up in. That world was spawned in the trauma of 13th century western Europe. And it’s dragged a lot of pain and suffering along with it into the 21st century. There’s no need for us to replicate that. Yes, trauma and drama are very much a part of our autistic experience, but we’ve got a lot of very creative thinkers in our midst, and we’ve got a huge range of abilities and interests and capabilities and voices who can contribute to the discussion.
Provided we can actually listen to each other.
Which is an open question in my mind, to be completely honest.
Anyway, I’ve been thinking that rather than having a monolithic overall “autistic community” per se, autistic community might actually consist of different “pods” of interconnected folks who share deep connections in specific areas. And it may actually be less of a noun than a verb. Community is something we do, as well as something we have. It’s a living, breathing, thrashing thing/process.
And I’m building my own community, as I go, finding my own “tribelet” where I can. As for the larger community, it can be a bit of a trash fire at times, but I don’t have to engage with it.
It’s all an adventure. It’s all an unfolding process.
I’m not going into the office today. Oh, no. Not today. It’s Monday. I’ll work, sure, but not in that damn’ office, in that damn’ cubicle, surrounded by those damn’ people. It’s much easier for me to do the sort of work I need to do, if I have peace and quiet and isolation. I’ve got some research to do. I can’t do that, with a steady stream of strangers stomping past my cubicle.
People ask me, sometimes, if I would ever disclose being autistic at work, so I can get accommodations. The answer is always “no”. I don’t expect my employer to offer me any accommodations, to be honest. The environment I work in is highly demanding, and they expect people to cover for themselves, not expect someone else to handle things for them. It’s a “tough luck” environment, where everybody — and I mean everybody — is expected to take care of themselves and not put additional strains on the existing infrastructure and overall team cohesiveness by expecting special treatment.
There’s a guy who’s missing an ear who simply puts a large bandage over one side of his head and goes about his regular business. The woman who worked in the cubicle before me died of lung cancer and refused to take time off while she was declining — until she was literally unable to work anymore. There are folks with significant physical disabilities walking the halls, and that’s just part of it. People show them consideration, but they don’t get a whole lot of special treatment. And autistic folks abound. We’re everywhere, at that place, but nobody actually ever mentions autism.
There aren’t a lot of official accommodations offered. I can’t get the fluorescent lights turned off over my cube, because that will short out the whole floor (according to Facilities). I don’t have a lot of control over the temperatures in the place. The scented diffuser in the restroom is non-negotiable. So, like everyone else, I have to fend for myself. Just like everyone else.
If you don’t like the noise in the space, you’re expected to put on noise-canceling headphones and concentrate harder. If you don’t like the temperature in the place, put on a sweater. Or wear something lighter. If you get overwhelmed by things, you’re expected to step away for a little while to unwind (a lot of people do that). If you have issues with sensory stuff, you’re expected to just roll with it, do what you need to do for yourself, and keep up. Just keep up. And when it all gets to be too much, you work from home. Like I’m doing today.
It might sound like a harsh environment (and in some ways it is), but the bottom line is, we’re all given the opportunity to manage our own situations…. Not throw the whole workplace into disarray because of a few unique requirements. We’re expected to be grown-up about things and arrange for what we need. Everybody’s got unique requirements, so rather than having the Overlords provide for your safety and comfort by official edict and codified guidelines, you’re afforded the right to determine your own conditions under the circumstances that everyone shares.
And I actually like that better than the formal accommodations thing. Because my needs change from day to day, and the help I need one day, might be “overkill” the next. This way, I just manage my own situation, and the work gets done.
So, today, that’s exactly what I’m doing. Managing my own situation.
I’ll make sure to get a nap this afternoon. I woke up tired, and I’ll be even more tired by this evening. I was out late last night, trying to see the aurora borealis in the northern sky. The plan didn’t work out. No northern lights were to be seen — just some brightness behind clouds in the distance. But it was fun to get out in the evening with my sweetie and just hang out.
The whole weekend was tiring, now that I think about it. I did a lot of non-standard hanging out. I wrote some pretty solid work both Saturday and Sunday mornings. On Saturday, I spent the afternoon visiting with a friend. Then on Sunday my partner and I went to see another friend compete in a dressage competition. Her horse is beautiful, and it was fun to get out to a different part of the world for a day. I was expecting a lot of moneyed people to be there, since dressage tends to be “high-end”. But there were just little groups of everyday people like me. And my partner got a chance to actually chat with other people, instead of being stuck with task-oriented me.
I know for a fact, I can be trying in those situations. I have a really hard time relaxing in public, especially when it’s a hot, bright, sunny day and I’m in a new and unfamiliar location. It’s just hard. So, it’s good for my partner to get to stop and chat with others, widen her world beyond my fretting about getting everything done in a specific order. Changes in routine can’t stop me from just living my life. Nor should they stop my partner from living her life, as well.
Yeah, it’s hard… so…? Everything worthwhile is hard for me. That just makes it worth more to me, when I manage to get it right.
But then, the exhaustion.
But then, the self-management. The self-accommodation.
I took naps, when I got home from both of my social outings. I just lay down in the bed and relaxed and slept. Then I did the usual — got up, made supper, ate supper.
Last night, I changed up my usual Sunday routine again, and we went out to see if the northern lights were going to show up as predicted.
They didn’t show up in the 90 minutes we were out there, and in the end, I got too tired and we had to come home. My partner was really disappointed. She’d wanted so much to see them with me. To share that experience. But the space weather didn’t comply. For me, it was good enough, just hanging out.
Now it’s Monday. I’m tired, but I’m happy.
And I’m going to take really good care of myself, today.
And God said, Let us make man in our image, after our likeness: and let them have dominion over the fish of the sea, and over the fowl of the air, and over the cattle, and over all the earth, and over every creeping thing that creepeth upon the earth.
Genesis 1:26 (KJV)
And Adam gave names to all cattle, and to the fowl of the air, and to every beast of the field;
Genesis 2:20 (KJV)
So, God creates Adam (man) and awards him dominion over all the creatures of the earth. Over “every creeping thing that creepeth upon the earth”. And God also confers to Adam the right to name all the creatures. Naming, ownership and domination have gone hand-in-hand for an awful long time. And periodically, it rears its head in the autisphere in an almost predictable way.
Once again, the issue of whether autism “self-diagnosis” (self-DX) is valid, flares up on Twitter.
It’s the same discussion argument that keeps coming up, time and again. I’ve had my own back-and-forth with people who started out wondering aloud if their opposition to self-DX might be their black-and-white thinking acting up again.
And I, in my apparently amazing Svengali-like power, have managed to so sufficiently piss them off, that they decide… No, it’s not really their admitted black-and-white thinking blocking them. Self-DX is NOT valid, they say. Impossible!
I always have to wonder about people who feel entitled to judge and police others. I understand the desire for intellectual purity and a clear-cut set of guidelines that clearly demarcates the “autism community” (such as it is). I understand the need for clarity, for standards. I understand the attractiveness of having gatekeepers blocking the intrusion of Munchhausen-esque pretenders who are looking for attention and a little drama. And I understand the need to establish official boundaries around who lays claim to scarce resources (tho’ on that last point, let me be absolutely clear that scarcity of resources is a result of political choices, and there are ve$ted interests who have a $take in awarding and denying services, so that last point is a jagged little bone that tends to get stuck in my craw).
Here’s the thing, tho’… Autism isn’t something that any one scientist (or a whole gaggle of them) invented. It’s something they identified in conceptual terms they could clearly communicate to the rest of the world, and subsequently diagnose, treat, and otherwise establish dominion over those whom they diagnosed.
They may have invented the conceptual framework for thinking about us and identifying where we fit in the world, but they didn’t friggin’ invent autism. Kanner didn’t. Asperger didn’t. Bleuler didn’t. They just noticed it. Documented it. Wrote shit down about it, and went on to science (and in some cases commercialize) the heck out of it.
And because they didn’t invent autism (I don’t care what Dr. Grinker says about it), they don’t have the right or the ability to say, one way or another, whether a person is autistic or not. God knows, they’ve fucked up often enough to call their expertise into serious question. If those same scientists drove cars the way they identify autism, they’d all have lost their licenses years ago. Or they’d be doing hard time for having run so many people over. Repeat offenders, many of them. Producing shoddy research. Misdiagnosing or denying autism diagnoses to people in genuine need of assistance. Playing gatekeeper to an amusement park full of rides that lock you into the seat permanently and spin till you’re nauseous and throw up all over yourself and everyone around you.
And yet, magically, they still get to keep their credentials. They do their shoddy research. They do their awful assessments. They deny and screw up and never think twice about the effect they’re having on others.
But, they’re the “experts”… right?
Here’s the thing that completely baffles me, when it comes to mental health folks and scientist-like individuals who screw up the autism thing. It seems to me (from the outside, admittedly), like they’re constantly covering for each other. And rather than taking each other to task, they gloss over the omissions and commissions with some non-committal “Well, there’s still a lot we have to learn” or somesuch. This is completely inconsistent with the behavior I’ve observed in mental health professionals I know (and I know a lot), who are always at the ready, quick to jump on each other and call each other out and warn you away from such-and-such a therapist, in matters like unresolved trauma, family dynamics, couples therapy, and any number of other hot-button psychotherapeutic topics.
And yet, when it comes to autism… silence. No judgement. Not even a constructively critical peep. Nope. It’s all “Well, nobody but a professional can actually diagnose you as autistic. That’s just how it is. Oh, and here’s my card…”
How does that work exactly? Seems that autism is good business, all around, and everybody’s looking to cash in on it. It’s just autism, right? And the people who are harmed by the most enterprising types, are the ones least likely to protest, to defend themselves, to make a stink.
So, about those tardigrades — teeny, tiny little micro-animals that can survive in outer space, as well as impossibly harsh conditions (like, a degree above absolute zero)… Unless you have an extremely powerful microscope, you can’t see them. And until we had the equipment, they might as well have not even existed. There’s a whole lot of stuff (animals, planets, star systems, chemicals) which we’ve only recently discovered in the past 100 years. It’s safe to say, those things have existed throughout time — and many will continue to exist, long after we’re gone. Just because someone noticed they were there, gave them names, and figured out how to study them, doesn’t give those people ownership of them. Nor does it mean they invented them.
They simply noticed they were there and put words to their observations.
Kind of like autism.
Just without the dehumanization that comes with all the Theory of Mind and “locked in” bullsh*t.
So, the next time somebody tells you that Kanner or Asperger “invented” autism, or behind-the-times “experts” are the only ones who are qualified to say you’re autistic, I invite you to join me in a hearty, boisterous laugh.
I’ve had some weird, inexplicable pain in my right side for over a week. Pain tends to come and go with me, and I often find myself with strained muscles, pulled sinews, general soreness, etc. It typically goes away after a few days, so I rarely pay it much mind.
That just comes with the territory when you do your own stunts.
But for over a week, I’ve had some pretty intense soreness in my right lower ribs. I haven’t been able to breathe easily, and laughing, coughing, yawning all send a sharp jab of pain through me. It’s been hard to sleep, and it’s been hard to sleep in. I go to bed later and I wake up early, which doesn’t do much for my frame of mind – and body.
Still, I hadn’t been spending a lot of time thinking about it, researching it, or otherwise paying more attention to it, than the intermittent OUCH! that comes after a sigh, an inhalation, a laugh, or a cough. Until the past few days — after the 7-day mark — when the persistent pain just got to be too much.
I called my doctor’s office and made an appointment. And I did some research. I isolated the experience — what hurts and where… when does it hurt… what did I do differently, lately… what makes it worse or better — and I wrote up some notes. I used a version of the Listening to your Body Worksheet over at AuptimaPress, and I added notes about my symptoms and my concerns.
I really hate going to the doctor. I never feel like I do a good job of communicating what’s going on with me, and by the time I actually see the doctor, I’m often overwhelmed by the sensory experience and not thinking very lucidly. But writing everything down (well, the important pieces, anyway) actually helped me.
The main thing is, I just need to make room in my life for this experience, this pain, this thing that needs to be fixed. Ignoring it wasn’t helping me. Paying attention (hopefully) will help.
It’s been a tiring few weeks. Summer is hard for me. Too much sunlight, too much activity, too much… everything. Bugs flying everywhere. Too little darkness. And so forth.
I know I should be happy it’s summertime — and the weather has been beautiful, lately — but it just overwhelms me, at times.
The best thing to do is go to bed early, pace myself during the day, keep with my routine… and remember that I’m not exactly like everyone else, so I need to give myself some more consideration.
One of the most tiring things about the summer, is all the people asking me what I’m doing with my summer “time off”. Am I going on vacation? Did I do something fun this past weekend? In all honesty, my idea of a good time is just staying in with a good book, keeping the house cool and dark, and spending extra time in bed.
But nobody else seems to agree with me. So, I have to “spin” what I say, so it attracts as little negative attention (raised eyebrows, rolled eyes, sighs, probing questions about why?) It’s extra work. It’s worth it, of course, but it’s extra work.
Extra work for the summer.
And I think back to Odd Girl Out, now and then. There is so much to comment on in that book, especially as an autistic woman (er… non-binary individual who was born in a female body). Even though I’ve never felt comfortable identifying as female, my reality in the world has still be shaped by the outside influences which have treated me as a woman.
I haven’t felt feminine, pretty much anytime in my life. But I’ve been treated as such, so I’ve inherited all the invisibility and overlooking and misinterpretation and misdiagnosis that goes along with being an autistic female. I identify much more as non-binary, rather than trans, per se, and my gender identity is fluid. Sometimes I feel almost female — almost. Most of the time, I feel like a combination, a gender “dim sum”, if you will, where I pick the parts of my identity that work best in any given situation.
But still… the issues that autistic women and non-stereotypical males face… those I face, too.
I’ve been thinking a lot about how invisible we are — especially to the typically oriented autism researchers. We’re starting to get noticed — women, non-binary folks, men who don’t “fit” the typical criteria for autistic presentation. But there’s a long way to go, before we’re actually understood.
Heck, there’s a long way to go, before just about anything related to autism actually understood.
But there’s a darker side to this invisibility. Reference the quote from Odd Girl Out above – that the life expectancy of an autistic person is 10-30 years shorter than neurotypicals. Personally, that hasn’t been my experience. I come from an autistic family — a very long-lived autistic family. My Aspie grandfather lived past 100. My very Aspie-fied great aunt lived to 98. Most of my relatives who would easily meet the criteria for autism have lived long and full lives. So, I’m not sure that piece applies to me. I can see how it would apply to many of us — especially because we typically have so much trouble dealing with healthcare providers, and we may be unable to detect troublesome symptoms due to variable pain sensation — and variable sensations, in general.
Personally, I’m ambivalent about the prospect of living 10-3o years less than my peers. On the one hand, I feel cheated. On the other hand, life for an unsupported, unrecognized, marginalized autistic person can be dreary and dismal — especially when we’re so capable of so much more.
So much more achievement.
So much more contribution.
So much more emotion.
So much more participation.
So much more experiencing, period.
Even if my life isn’t “lived out loud” and in full view of the rest of the world, my overall experience is curtailed by the constant dealing with innately hostile situations — draining my energy from “peopleing”, standard-issue “adulting”, navigating the nonsensical, illogical, arbitrary world that tends to violate most of my sensibilities with impunity. Yeah, even though I do a fabulous job of shielding myself from the mindlessness of the world around me, and I’ve constructed an internal life where I am supremely comfortable and incredibly productive, I still feel cheated by the constant drain of my energy, time, attention, on things that are — frankly — beneath us all.
So, does the idea of spending 10-30 years less in the midst of this stupid mess really bother me? I’m not sure. I just hope the end isn’t too painful.
On the other hand…
Will I let the stupidity of the world stop me from living my life? Will I allow the mindlessness of others throttle my joy? Why should I? Why should I settle for less?
I shouldn’t. And I don’t intend to. I keep to myself for a reason. Because the way things are in the mindless world is far too brutal and pointless to be worth my time, energy, and attention. I’m constructing my own world in parallel, laying in the scaffolding, the infrastructure for my own happy existence.
I’m doing everything I can to constrain the amount of personal investment I expend on the neurotypical world, which makes no room for me. I’m using the time and energy that saves me to create my own space, my own environment, where I am wholly and fully myself. Regardless of what the rest of the world has to say about it.
I was raised in a community that was “streng getrennt” from “the world”. They kept themselves separate and apart from the mainstream, because they saw what a tremendous trap it was, for people like them. After decades of questioning the value of creating that type of world, I now see the point of it. And I’m drawn to replicate that in my own life — just not as part of a religious community.
It’s all a work in progress. And it’s work that needs to be done.
Because regardless of what the neurotypical mainstream world thinks of me and wants for me (mostly, what it wants from me for itself), I have value and merit in and of myself. I deserve to live. I deserve to thrive.
I’ve had a really busy and really productive weekend. Things have really flowed for me, and I’m pleased with the outcomes.
So far, anyway.
The thing about my past 48 hours is that they’ve been the culmination of months and months of inactivity. I finally got some real work done on a project that had been languishing for many months. And it flowed. It really flowed.
I also re-connected with an old coding buddy of mine who has a startup thing happening. It sounds like a fantastic opportunity, but of course they’re just starting up, and I need a regular income. So, we won’t be working together much unless / until he gets on his feet and can compensate me for my time.
It could work.
It’s just not fully formed, yet.
I’m looking ahead to the coming week with great expectation. The three people who have been making my life extremely difficult with their competing agendas and conflicting information are both going to be away. One is on vacation for two weeks — woo hoo — one is getting married and won’t be back till August, and the other one is traveling all next week.
At last! Some peace and quiet at work. So, I can actually focus in and get some work done.
I’m really looking forward to it.
Of course, I have to replenish after this weekend. It’s been pretty arduous, to be honest. And I expect to feel it keenly, tomorrow. But tomorrow evening I have my autistic adults support group, so that’s going to be fun. And I’ll get to see my new friends again, in an environment that actually works for me.
This quite a long read – started while on my walk down the road and back, yesterday. I dictated the majority of it while surrounded by trees, so I think that helped. It’s something I’ve been thinking about a lot, lately, as I work my way through books by and about autistic people.
What does it take, to read the autistic life? Literature about us abounds, written by psychologists, psychiatrists, parents, and various other experts. And yet, the volume of work by autistic writers … lags. There are plenty of autistic people in the world, and some of them are excellent writers. So, if we’re to build up Autistic culture, we need to support our writers as best we can. Signal-boost. Read and comment and share. The thing is… that’s easier said than done. In this long piece, I discuss the experience of reading the Autistic life, how it affects me, how I do it, and how / why I don’t do it as much as I’d like. I fall short of my own hopes and expectations. But that’s for a number of excellent reasons.
Finding Myself in the Pages
Lately, I have been trying to read more books by and about the autistic experience. Reading is one of my “big stims” — it calms me like nothing else, and I do a lot of it. The thing is, most of my reading is research papers, with endless abstracts, discussions of methodology and data, conclusions and discussions swirling around in my head.
There’s nothing like a good research paper to ease the existential angst of daily life. There’s a discrete beginning, middle, and end, and most papers I read don’t last past 10 pages. It’s really wonderful to have access to this amazing research (via Google Scholar, especially), and when I’ve come across papers I couldn’t afford to purchase, some researchers have actually sent me copies of their work. That’s a very significant experience for me – akin to having a rockstar ask me to tune their guitar. It may sound like I’m overstating it a bit, but only if you don’t understand just how highly I regard researchers and scientists and really value the work they do. When I was a kid, all I wanted to do was become a researcher. It was my dream. But I found another way in life, which may have actually worked out better for me, personally. (More on that later.)
But increasingly, I feel the need to hear about real life people and real life situations, in all their anecdotal glory. That goes for autistic people and autistic life. After all, this is my tribe, my community, my shared reality. Why not listen to what others have to say about it? I also really believe strongly that autistic individuals absolutely need to support their own culture, so as best as I can, I try to read books by other autistic writers – especially stories about their lives. If I can buy a book, I do (usually through http://www.abebooks.com, so I can support independent booksellers). If I can find it at the library, I check it out. If I think the library should have a copy, I sometimes suggest a title to the acquisitions people.
It’s so rare — so, so very rare — for me to see my own experiences replicated on the printed page. To say that seeing my life experiences mirrored in the words of another person is good for me, is an understatement. I’m not sure what sort of statement would suffice, because frankly it’s hard to describe exactly what that experience is like. It’s putting a non-verbal, visceral experience into a format that exists in a parallel universe. It’s trying to describe tasting a food you’ve never eaten that has tastes and textures you’ve never before experienced. It’s like translating hieroglyphics into Latin. Some meaning, at least, will be lost. But I’m gonna try. I always try. That’s what I do.
For me, reading about the lives of other autistics is a very stop-and-go undertaking for me. I start with heady exuberance, picking the book I will disappear into, and then devouring paragraph after paragraph, highlighting the passages that seem to jump off the page at me – sometimes whole pages turn bright yellow with almost-straight lines of highlighter creating a jagged right margin of light – and I move from page to page with eager abandon.
Then I have to put the book down and step away for a while – and hour, a day, sometimes a week. Sometimes a month or two. I have to let it sink in. I am so accustomed to being invisible to the world… so acclimated to constantly translating the lives and sensibilities and experiences and values of others into something that is recognizable to me… that finding fluidity while parsing an experience that mirrors my own is a bit like trying to walk on your own two feet after balancing atop a galloping horse for four days straight, hanging on for dear life, your legs clamped tight around the heaving belly of the beast. When I “dismount” and step away from the steady stream of words, I’m wobbly on my feet. It takes practice to get my everyday mundane balance again.
You see, I’m not used to this. I’m not used to seeing myself on the page. I’m not accustomed to recognizing things at first glance when I read them in coherent, continuous sentences. I’m so accustomed to piecing myself together in fragments, looking for brief flashes of recognition to light my way, that to have one uninterrupted expression of autistic experience is, to be honest, almost blinding.
I blink. And I stumble. I put the book down and walk away, just as I used to put down the wide sweeper I used to clear my neighbor’s driveway and walk away, when the dust and the bright sunlight and the noise of the world around me got to be too much.
I fall back into literate silence.
A Life Continuously Translated
It’s not that I don’t want to finish the books. I do. With all my heart, I do. It’s just that it’s overwhelming. My inner life is like a desert in many ways – spare and clear and clean. It’s devoid of a lot of the cognitive “undergrowth” that seems to typify the neurotypical world. Where the average person — those other 67 people not on my spectrum — have a host of interactive relationships and confidantes and hobbies and activities (many of them relating to their kids) and plenty of opinions that get expressed and evolved on a regular basis, that’s not my reality. Their inner life seems to be the equivalent of an effulsive rain forest filled with drama and exuberant growth; mine in comparison strikes me as a desert with sand and scrub brush and cacti as far as the eye can see. An odd lizard or scorpion or snake… And not much rain. But there is life here. Beneath the surface, and under conditions that must consider in hospitable, there is life. And lots of it.
My outer life is very much like that inner life. As I look around, I don’t see a whole lot of “me” reflected in the ways and means of the world I inhabit. I know I’m quirky. I know I’m unique. But it never ceases to amaze me, just how unique others consider me. In my own eyes, I’m really no different from others in the ways that matter — I’m just really, really interested in some things. I just really, really get caught up in stuff that other people glance at briefly before moving on. And it never ceases to amaze me, just how little of the world actually resembles something I’d consider acceptable. The thoughtfulness, kindness, compassion, depth, empathy, meritocracy, abundance of libraries, good music, nutritious and tasty food, fresh air and plenty of time to enjoy it, nuanced variety of culture, and comprehensive start-to-finish recycling programs that all seem bare minimum prerequisites for civilization… where are they? What the hell, people? Where are they?
It’s not easy, having excruciatingly rare access to things that I consider fundamental to living a decent life. It’s not easy, rarely seeing your own values, your own sensibilities reflected or even recognized in the world around you. And it’s no wonder to me that non-autistic people are horrified at the prospect of autistic existence. To never be reminded of who you are, to never see yourself mirrored in the world around you, to never have any products or services or food or activities or inventions that suit you praised and “upvoted” for the good and useful things they are – except in the occasional case where some necessary implement of artistic sanity is hawked as a novelty, a fad, a doodad to pass the time – I can’t imagine that neurotypicals would survive for long in the world I inhabit.
As a queer non-binary person, also, I can pretty clearly say that my version of life would probably drive neurotypicals to the edge of sanity. My marriage is not so very different from straight people’s. Yet, it is different — and we’ve constructed it that way on purpose. My gender and the ways I express it are something my straight peers acknowledge only after they’ve gotten a few drinks in them and they’re feeling a little… uninhibited, if not curious. My marriage rarely comes up in casual conversations at work, unless I jump into the conversations — and then the discussion doesn’t last long. I’m most welcome when most of me is invisible. If I didn’t have to put up with this to make a good living (and make sure I don’t die destitute and dependent on a government that already wants to kill me), I’d never bother.
Most neurotypical straight folks I know have no stomach for this kind of life. To never see people like you on television, movies, or in popular media conversations, except to make fun of, or to be called out as an example of what you should never, ever become – that sort of invisibility, or worse, animosity… I’m sure that drives a lot of marginally straight neurotypical people to adhere with all their might to heterosexual arms. I don’t want to be unkind, and I hesitate to over-generalize — and of course there will be exceptions to these rules I’ve concocted — but I’ve been watching all this long enough to detect repeated patterns.
All around, I am a desert, compared to my rain-forest friends. As well as I may appear to blend, at the core, I do not fit. If my life’s essence were translated into a single sentence, it would be expressed in 50 different languages, including sign language, Morse code, pictographs, and the symbols of some alien race that appeared on earth for a few decades 10,000 years ago, then left when the locals got hostile. In nearly every aspect of my life, I am continuously translating what others say and do and model into something that might – just might, if I’m lucky – work for me.
And, more importantly, I am continuously translating my own experience into terms and conditions that non-queer people of all neurotypes can relate to. It’s essential to me that I meet people mid-way in creating the dynamics between us. It’s non-negotiable that I try… even if they do not. Ironically, I tend to translate myself so well, others don’t realize I am being translated. Except there’s just this one little thing or two that’s “off” about me. Like when I lived in Germany from 1985-87 and my German was devoid of any American accent. People guessed I wasn’t German, but they were certain I wasn’t American. A European of some kind. Maybe Danish…
It’s not that I am so terrible at being myself. It’s not that I’m ashamed of my queer autistic self. My queer autistic self is awesome! It’s not that I am so terrified of getting my ass kicked – although the prospect does come to mind, at times. It’s that I literally see myself as a perfectly valid thread in the intricately woven tapestry of life, and I have my place as much as everyone else – just as they have their place. We all do.
That sheer volume work has conditioned me to forever view my world through a lens. A filter. A prism of sorts that breaks out the light around me into distinct phases of the full spectrum, so that I can understand it better and do something with it. The bulk of that work falls to me, as I’ve rendered my uniqueness essentially invisible to the normalizing forces of the world. But it must be so, lest they try to rub me out and force my square size into their round hole – see Sonya Boue’s excellent piece for more. Getting my ass kicked is not nearly as violent as the imperative that we all conform. Nor is it as threatening. Frankly, I’d rather be beaten than part with my essentially autistic self.
Preserving my own autistic self while inhabiting everyone else’s world requires that I constantly apply a filter… and then act accordingly.
They said ______________.
What I think they meant is ____________, but what they really meant was ___________.
If I were in their shoes and I meant __________, what would I want to happen next?
Really? Who would want that?
But based on past experience apparently, they do, so just suck it up and act accordingly. It’s what they need. It’s what the situation calls for. Who cares if it makes no sense to me? That’s what’s required under the circumstances.
Suck it up, and move on to the next nonsensical situation. And forget yourself and your standards in the process. If all goes well, you’ll reach the end of the day without turning into collateral damage.
If I don’t apply the filters and react according to what I’ve learned, I run the risk of coming up short. Setting someone off. Making something nervous in ways that they don’t understand, but which somehow trigger them to intensity, even violence. I have failed socially more times than I can count, in ways that to this day I don’t even fully understand. All I’ve had is a sense – an empathic sense, a co-experience of roiling, uncertain, intimidated emotions — from the other side of the space separating me from my interactive counterpart.
I did it wrong.
I said it wrong.
I didn’t answer right.
I didn’t reply the way I was expected to.
And so follows the inevitable pulling back of that once hopeful but now distant other who is confused – and rightfully so – because I broke a rule of engagement that everyone knows must be obeyed. Or worse, I’ve bent to the rule into an unrecognizable shape, so that the original is no longer useful, recognizable, or desirable. I’ve turned it into something else, which makes my faux pas even more subversive, even more dangerous than a simply broken rule.
Looking Directly Into the Light
So when I read stories about autistic lives and autistic experiences that mirror in my own, it is with a sense of trepidation and a little dread. I must drop my filters. I must put down the lens. I miss look at these things without my skewed-by-design vision – the kind of skewed vision that in non-queer non-autistic spaces keeps me safe. I have to not just look, but experience these stories as my own. For they are. I have to take in these accounts of feelings as the person I am — as the whole of me. Viewing them as a distant “other” makes them unreadable, for the language becomes a polyglot mishmash of terms I can only understand from within them. Taking a cool, distant look at them… treating them as a subject to study, rather than to experience puts me in league with Francesca Happé, who said our “accounts are intriguing, [but] it might be a mistake to take what is said at face value”. (see Happé, Francesca. 1991. “The Autobiographical Writings of Three Asperger Syndrome Adults: Problems of Interpretation and Implications for Theory.” In Autism and Asperger Syndrome, edited by Uta Frith, 207-242. Cambridge: Cambridge University Press.)
Putting some distance between myself and the other autistic writer may seem like a safer thing to do (I know it seems that way to me), but in doing so, I find myself unable to decipher the multilingual, multi-modal ways of thinking and understanding that are native to me. To make sense of what I’m reading, I must accept that I understand what’s being said. I must drop the protective shield and let the stories in, where they strike notes and pluck chords that are usually only mine to play in the secure silence and secrecy of my own autistic soul.
And it angers me. It frustrates me. Here I am, sitting down in the privacy of my own home, and the safety of my own cocoon, and I cannot seem to let myself relax. I cannot sustain attention long enough to make the most of these precious experiences, these personal accounts which have been entrusted to me and I cherish as a part of my own people, my tribe… the living, beating heart of my own culture. I cannot seem to get myself the leeway to sit with these things for more than an hour or two. What is wrong with me?
Actually, there is nothing wrong with me. There is everything that is right with me. But that everything has gotten the shortest of shrifts, when it comes to actual practice in the outside world. Looking directly into my own reflection on the printed page is similar to looking directly into a stranger’s eyes. It’s too much. Literally. So much emotion. So much recognition. So much uncertainty. So much to process. So, so much. Who is this stranger I see? Who is this … me … speaking loud and clear?
When I sink myself into the experience and relish it fully — as I must — I am not only internally overwhelmed, but also propelled in 100 different directions. In the space of one page, even one paragraph, I can relive the vivid memories from my own life that match what I see on the page.
For every one mention of bullying, 12 different recollections pop up in my mind – both from my own experience and from instances I’ve heard about from others like me. I have to stop and ask myself if perhaps I was actually bullied a lot more than I think I want to see. I have to wonder if I miss read all those social situations where I thought I was fine and I thought people were my friends, but they were actually being cruel to me.
My life has been peppered with people who I thought we’re good for me, but who were actually very bad for me. I now know why I chose to develop relationships with them – the very fact of their meanness woke me up in a way. They kept me on my toes. They charged up my brain anyways that I needed for the sake of sustaining attention. Part of me needed to be around people who didn’t treat me right, not only — as the psychologists tell me — because it was familiar to me from a lifetime of mistreatment, but because the stress hormones stimulated my ability to be ON and be fully engaged with my own life. I wasn’t just a sucker for punishment. My system knew what I needed to stay charged up, and mean-spirited people who treated me like crap offered just the occasion to do that.
Of course, there was the inevitable confusion about what the social cues minutes – in the midst of all that sensory overload – the bright lights, loud noises, the quick movements, and the perpetual fatigue the dampened me in so many respects. The trauma, the drama that I hardly noticed, but “sank in” days, weeks, sometimes years later, and which still took a toll on my bio-chemistry and neurological wiring while it was happening. Alexithymia has been both a friend and then getting me in that respect.
The kinds of sidebars and tangential explorations of the past two paragraphs consume much of my internal time and attention, whenever I read Autistic lives. Just a mention of being bullied, just a paragraph about a social misunderstanding followed by ridicule will be set off an associative cascade that sidetracks me for hours, days, sometimes weeks… even months. I know that now. I didn’t before, when I was struggling to finish an eBook I’d downloaded back in 2016. I sensed it vaguely, but it’s taken me quite some time to understand that’s what’s happening.
Cue the Flash Flood
It’s not just dropping the filters… lowering the shields… that intimidates me. It’s also the open floodgates of information – all of it highly detailed, much of it carrying an emotional charge – that turns my reading of Autistic lives into the start-stop exercise… and trying to remember where I last left off in the book, and promising – challenging – chastising myself throughout the process.
I have to cut myself a proverbial break. I am not used to this. My desert life is not accustomed to this level of recognition and ease of empathy. I’m accustomed to jumping from conceptual rock to rock, while crossing the rapids of non-queer, non-autistic life. It’s fraught. It’s perilous. But it’s what I know.
Now this… this recognition. This unleashing of pent-up information I’ve categorized and tucked away in the back of my mind for future reference — lessons learned to keep me from re-committing crimes of social omission and commission that I still don’t fully grasp. This release of data points serves no protective purpose. What good can it to do me, aside from reminding me of my challenges, difficulties, and lack of place in this un-me-like world?
Like sudden storm in the desert, directly reading Autism sets off flash floods emotion, association, the re-experiencing of things I never thought I wanted to experience again. I am not used to this. The rain has nowhere to go when it hits the parched, cracked surface of my rock-hard shields. My earth cannot take it. I cannot absorb the sheer volume of all that liquid unleashed in such a short time. The veritable rainfall goes where it will, draining to the arroyos, building and building and flowing and growing, sweeping into the canyons, washing out gullies that have been blissfully dry for years, sometimes decades. The flash flood carves crevices into my understanding of who I am, who I was, who I can become, eroding assumptions, undermining my characteristic understanding what my identity should be. Here’s another Autist, apparently just like one-in-68 me, speaking of things that neither of us ever wanted to happen. We cannot turn back the clock, we cannot undo what’s been done, we cannot un-see scenes that were forced upon us in the unfolding drama of our lives. It’s just there, this shared fund of unwanted knowledge. It’s all just there. And it’s bearing down on me like a high wall of flash flood filling a space that I thought was just another neatly carved out hiking trail.
So, I jump out of the way. I scrabble up the side of the gully and pull myself to safety, waiting for the flood to pass. I put down the book. I turn off the tablet. I go do something very different for a while. Maybe I even forget I was reading the story, to begin with. I want to read it. I need to read it. Just not all at once. Eventually, I’m sure, the water level will recede, and I can continue on my journey. Maybe I dip a toe in the passing water, testing the temperature. Maybe I try to wade across. Maybe I decide to go for a swim. But the fact of the flood is there. Inescapable, the only thing I can do is engage.
Living to Read… Reading to Live
Small wonder, it takes me so long to read these books. Once upon a time, before I knew the first thing about why I was the way I autistically was, long before I even needed to know – I was a kid, what difference did it make? – I could read for hours. And I read fast. Book after book. Sometimes the same book over and over. In retrospect, I don’t think I understood everything I was reading (for all the times I spent on Lord of the Rings, I grasped only select parts that meant something to me). But total comprehension was not the point. The point was to read. To drag my eyes back-and-forth across the page and there with make the kind of movement that would soothe my frazzled nerves and give me a sense of consistency, show me pattern I could follow, grant me I cadence that was mine, all mine, and place me with in the safe embrace of the sound of turning pages.
Now, things are very different. It’s not just soothing I seek in my books — it’s something more. Something decidedly un-soothing. In reading Autistic lives, I must read for comprehension, God help me. I must do it for my community, I must do it for myself. I must do it, to lift something common from a place shared across space and time, to elevate it into the public view. To read, and then to write. To share and share some more — between myself and the writer, between the writer and the rest of the world. Culture doesn’t create itself. It needs human interaction as a delivery agent. Even if that interaction is sequestered to a book-lined upstairs study somewhere in Central Massachusetts. Culture does not live on its own — it lives through us, and I am a willing gateway.
And so I read Autistic lives. I keep my select set of books near to hand, with my highlighter and my odd sticky notes, and I read what I can when I can. I load up my eBook copies on my various devices – phone, tablet, laptop, desktop – and I email myself screenshots from the marked-up passages. I copy text and send it to myself. I blog about it. I think about it. I’m not sure that I’ve ever really cried about it, but that they may yet come.
Try as I might, it’s still hard for me to come closer, to fully engage with those words on the page. There is always this distance between me and the depicted world – a residual stamp left over from all my dealings with a non-autistic world that is nothing like me. There is still that habitual distance I keep between myself and others, because I am – after all – other. I am that by default and by choice. I don’t think it’s bad, I don’t think it’s good, I think it just is.
And being other doesn’t completely stop when I read the words of autistics. When I take in the accounts of others’ experiences which are so much like my own, I cannot help but compare and contrast. I cannot help but make myself an Other. Perhaps being “one of them” exposes me too much. Or maybe it’s more honest and accurate, to acknowledge that no matter how much we may have in common, we are still separate and distinct. Being surrounded by autistic folks, as I am now and then, I can still feel every bit as lonely as I do when I’m with allistics. Maybe there is no such thing as unity, and maybe even though we share core experiences, we are still too different from one another to truly connect in the ways that so many wish and hope to.
Part of me feels disqualified. So much for unity. But I know that my autistic brothers and sisters probably won’t hold that against me. Because they too are Other. And perhaps the greatest kindness anyone can do for us is to accept us as Other and simply accept it. Let that be. To allow us the space to be different, to be unlike the norm, to distinguish ourselves as wholly unique – all our fragments making up a series of loosely associated whole humans… The most separate being the most human of all.
And so this long piece brings me to a point of grudging acceptance – that it is unrealistic to expect myself to simply breeze through all of the readings about Autistic life and experience, as though it were just another research paper. These are excavations of hidden lives, archaeologies of autistic spirits, and each of the items pulled from the thick, protective dust of variously pulverized souls must be handled with care, like any artifact of prized antiquity.
We Autists are as ancient as ancient can be, and our fragmented lies are so deeply hidden. Should we not treat them as treasures? Should we not treat them the same care, caution, protectiveness that we would give a shard of pot, a piece of jewelry, and inexplicable item of adornment which surely must have been so very important to someone who wanted to wear them on their journey to the other side.
These are treasures which cannot just be back-hoe-d out of a pit and tossed onto a pile. They must be carefully, ever so carefully, lifted into the light of day, dusted off, examined, and yes – loved – into their full usefulness. They are not the sorts of artifacts that should be placed in a case in the basement of a museum. Rather, treated like the set of perfectly wrenches that got dropped by accident a long time ago, and which can be restored to usefulness with the proper attention and care.
What we find in these stories has worth. It has use. And so I must tread carefully as I mix my metaphors and wade across the sloshing arroyo of these stories, careful not to slip, respecting the power of the current, and knowing that for all the flood bearing down on me now, there could be even more close behind.
All these things need caution. All these things cry for care. And so I will allow myself that space… that freedom… to fully and completely commune. In the privacy of my own life, in the security of my own cave, and the silence of my half-healed mind where an entire universe lives and breathes and has its being.
And maybe, just maybe, the pent-up tears will come.
Hear me out, before you click away in disgust. I’d like to declare a conceptual “truce” with autism researchers. Way too much energy goes into rebutting and refuting often-well-meaning individuals whose stated (or implied) goals are to relieve the suffering of (autistic) humanity. I think we’re in the midst of a needlessly tangled mass of confusion which can be addressed and made right by a basic change of terminology – which in fact signals a refinement in how we approach autism in general.
This proposal is about more than semantics. It’s about the very roots of how we conceptualize autism, and where we put our energies in addressing its challenges and redeeming its experiences.
A few weeks ago, I was in discussion with several autistic women, and one of them brought up the idea of “curing autism”. Another one of the women was not amenable to that word at all — and I mean NOT. She got so upset, she almost left the conversation, and we spent a fair amount of time trying to help her calm down.
She did calm down, eventually, but the detour in the conversation was a stark and startling reminder of just how charged the concept of “curing autism” is for many people.
I’m not comfortable with it, either. I consider myself fundamentally autistic in nature. My family is all quite “spectrum-y”, and I grew up in a world where many people met the DSM-IV criteria for Aspergers. They’d also meet the DSM-V criteria for Autism, if anybody looks… but since that’s the “normal” way to be in that part of the world, nobody thinks to wonder if it might be “disordered”.
I don’t consider myself disordered. I’m just of a different neurotype than the other 67 people around me at any given point in time. When I view them honestly and without the customary masking, my well-concealed traits and qualities align neatly with the standard-issue descriptions associated with Autism. And when I talk about my life, I synch up nicely with the descriptions that other autistic folks provide of their lives – in both positive and negative respects. Fundamentally, I am Autistic. I am part of an Autistic community and culture. And like so many others on the spectrum, I wouldn’t change it for the world.
So, when someone talks about “curing autism”, it sounds to me like they’re trying to get rid of me… to eradicate the very qualities that bring vibrancy and enthusiasm to my life, as well as imbue me with the mind-boggling (to non-autistics) ability to get a whole lot of sh*t done in a short period of time, and do it better than just about anybody (except an autistic person) would reasonably expect.
Yes, autism can be challenging. Living in a non-autistic world as an autist is a pain in the ass, much of the time. I don’t see why I should have to be “fixed” or “cured”, when the rest of the non-autistic world doesn’t seem to be doing that fabulous a job of stewarding the planet and caring for its inhabitants. Why would anybody want to “fix” a collection of traits and abilities which have actually moved humanity forward?
To be honest, it feels like all that autism-cure research and the people producing it are “out to get me”.
Maybe I’m just being literal — it wouldn’t be the first time.
Then again, maybe that’s exactly what non-autistic researchers and scientists are hoping to do: cure autism, stop it at its root, weed it out from the general populace, so countless parents, families, teachers, and other allistic members of society needn’t be discomfited by our existence.
Here’s the problem, as I see it — they’re not really trying to cure autism. They’re confusing symptoms of social/biological/cognitive dynamics with a fundamental quality of life. They’re doing the equivalent of trying to change fair skin so it doesn’t burn so easily in direct sunlight… relieving suffering for “ginger” people with the palest of pale skin who suffer a lot from sunburns. That may be a noble goal, but some people are simply born with fair skin, and they like it. Or, they may not like it so much at times, but that’s what makes them who and what they are.
There are common-sense ways to address getting sunburned all the time. Like A) staying out of the sun at peak hours, B) covering up, and C) putting on some danged SPF-30 sunscreen. You don’t remove someone’s skin, or chemically change it, so they don’t burn. That’s a ridiculous thought. And yet, that seems the equivalent of what autism researchers are aiming for. They seem to want to get rid of my autism forever — the equivalent of flaying me alive “for my own good”.
Or do they want to get rid of autism? I’m not so sure. They want to get rid of suffering, and they believe that autism is the cause. Hmm. I suspect many such researchers are confusing their concepts. They’re thinking that extreme symptoms like rocking in withdrawn silence and refusing to interact are autism. They’re mistaking behaviors like stimming, intensely focused interests, and social “quirks” for autism itself. They’re operating within an elaborate network of reinforced false equivalencies that are skewing their understanding of autism and conflating our autistic ways of being with a widely varying mental disease.
They just don’t realize it.
And because everybody in the non-autistic autism-research community is agreed on their fundamentally flawed concept of autism (or they’ve agreed upon the general use of the admittedly misunderstood term for their common purposes), they’re reinforcing its misuse through practice, discussion, and funding. They’re inadvertently perpetuating cycles of counter-productive, highly problematic (some would say abusive) attitudes towards autistic people which not only harm us, but also prevent those scientists from even understanding what it is they’re researching.
But I think there’s a different way to conceptualize their work — and if they shifted their own frames of mind (and terminology) about what it is they are really doing, we might be able to make some headway in terms of relieving the suffering of so many autistic people and their non-autistic loved ones.
Rather than trying to understand Autism… What autism researchers are actually doing is trying to understand the root causes of the suffering that autistic people experience.
They’re not researching the Causes of Autism. They’re researching the Causes of Autistic Suffering.
What’s more, they’re looking for ways to mitigate those causes, so we (and everyone around us) can lead happier, less painful, more productive lives. They’re hoping to find the cause for our behaviors and symptoms, which are just that — behaviors and symptoms.
Those signs of distress and discomfort — the meltdowns, the blocking out of any human contact, the extreme repetitive behavior which may actually be self-harming in some cases (and yes, I’ve done it — from a young age, I used to be a head-banger and hair-puller who scared the crap out of my mother more than once)… I do think it would be useful to better understand how to avoid and manage the causes of those things. I do think it would help a lot of people on (and off) the Spectrum, to get some data about what eating a certain diet does to your highly sensitive system. I do think it would be useful to understand the biochemical nature of meltdowns and find ways to “nip them in the bud” before they turn into full-blown blow-outs which reduce many people like me to a faded version of themselves for days (even weeks) afterwards. I do think it would be useful for parents to better understand what prompts their children to withdraw and/or not speak, so they can A) give them the space to do what they need, B) not worry so much about it, and C) help their kids have more self-determination in how they interact with the world and develop into happy, healthy adults.
When we stop talking about “curing autism” and start talking about “relieving autistic suffering”, the research takes on a whole new direction. When we stop using the cognitive shortcut “autism” and start describing the exact problematic behaviors and traits that are experienced as a result of environmental, physiological, or social factors which form the substrate of their autistic distress, we may actually start having productive conversations about autism — and the dollars sunk into all that research might actually get somewhere.
Personally, I think the term “autism” is a red herring. It’s a conceptual catch-all that means whatever people want it to mean. It’s like the word “crazy”. People use it all the time, to avoid being more specific about what they really mean. Rather than saying “That man was deeply frustrated by what was going on, and his behavior became erratic and unpredictable in ways that scared everyone around him,” people say “That guy went crazy.” It’s quick, easy — too easy — and everybody thinks they know what it means. But they don’t. Not really. And that choice of words does unintentional (iatrogenic) harm.
Likewise, with autism, people talk about “children with autism” when they really mean:
autistic children who withdraw from sensory stimuli in ways that non-autistic individuals don’t understand
autistic children who experience physically, mentally, emotionally intense episodes of uncontrollable outbursts in the face of sensory overwhelm
autistic children who repeat words and motions to self-soothe in the face of sensory and cognitive overwhelm
You could argue that “autistic” covers all of the issues above, but that generalizes the situation too much. It chooses to focus on something that can’t (and shouldn’t) be changed — the autistic nature of the individual, making the individual essentially responsible for their own distress. More problematically, it glosses over the impact of external influences which actually CAN be managed and mitigated and totally misses the opportunity to understand the fundamental nature of the challenges faced — as well as the myriad ways those challenges can be productive and effectively addressed.
But when we change the words we use… well, that changes how we think… and how we approach the situation.
Here’s a quick example for you — below, you can see what a conceptual difference a simple change in terminology can produce. I’ve pulled the abstract from the paper Evaluation of Intestinal Function in Children With Autism and Gastrointestinal Symptoms and changed some key terms — substituting references to “sensory distress” for blanket-term “autism”. I’ve also removed the biochemical references for readability. You’ll get the point.
Objective: Alterations in intestinal function, often characterized as a “leaky gut,” have been attributed to children who are on the autism spectrum. Disaccharidase activity, intestinal inflammation, and permeability were analyzed in 61 children with autism and 50 nonautistic individuals with gastrointestinal symptoms.
Results: Some children with autism had mild levels of mucosal inflammation on intestinal biopsy. <snip>
Conclusions: The present study supports the observation that children with autism who have symptoms of gastrointestinal disorders have objective findings similar to children without autism. Neither noninvasive testing nor endoscopic findings identify gastrointestinal pathology specific to autism, but may be of benefit in identifying children with autism who have atypical symptoms.
Objective: Alterations in intestinal function, often characterized as a “leaky gut,” have been attributed to autistic children who withdraw from interactive contact and/or engage in repetitive, sometimes self-injurious behavior, as a result of heightened sensory distress. Disaccharidase activity, intestinal inflammation, and permeability were analyzed in 61 autistic children with behaviors related to extreme sensory distress and 50 nonautistic individuals with gastrointestinal symptoms.
Results: Some autistic children in sensory distress had mild levels of mucosal inflammation on intestinal biopsy. <snip>
Conclusions: The present study supports the observation that autistic children reacting to sensory distress who also have symptoms of gastrointestinal disorders have objective findings similar to non-autistic children. Neither noninvasive testing nor endoscopic findings identify gastrointestinal pathology specific to autism, but may be of benefit in identifying autistic children in sensory distress who have atypical symptoms.
To me, that second abstract reads very differently. And the results of such a reworded study might actually prove useful when thought about in different terms. Whereas the generalized designation of “autism” doesn’t shed much light on the precise nature of the issues, or the interconnected cause and effect, being more specific about exactly what’s at stake does serve to enlighten… not obscure.
Again, autistic reactive behaviors and sometimes disturbing traits are not autism. Rather, they can be signs of autistic suffering — something that most of us would like to alleviate.
I firmly believe that a relatively simple conceptual jump towards greater specificity in what exactly is meantand what exactly is being studied could align us, not continue to divide us.
Some might say it’s just a different choice of words.
I say, it’s a gateway to a whole different way of conceptualizing autism research — and a bridge to actual progress that can involve a whole lot more collaboration… not to mention productive results.