I talked last time about how sensory issues (hyper- and hyposensitivity) can make life… interesting. The thing is, they don’t just complicate our own lives. Sensory issues also make interacting with the rest of the world very, very challenging.
Some researchers, like Olga Bogdashina, have been advocating that the mainstream take a closer look at our sensory issues and see how they are actually affecting our ability to interact with the world — and communicate. A recent “autism awareness” campaign showed the point of view of a young boy in a shopping mall who was overwhelmed by sensory input and just shut down. To the outside world he had become a “behavior problem”.
Those of us on the autism spectrum don’t need experts and non-profit organizations to tell us that sensory issues impact our communication. Some of us have been trying to bring that point home to the non-autistic world for quite some time — to no avail. ‘Cause seriously, it’s tough to sustain the levels of energy necessary to get people’s attention and get them to understand why they should even care / believe you, when the stress of doing so is spiking your own sensory issues… which then impedes your own ability to communicate.
Sensory issues are a funny thing. They can be our greatest joy, or the source of our greatest pain.
And yet most people just take them for granted – at least, neurotypical folks do. The five main senses – taste, touch, smell, hearing, sight… well, those are just how we interact with life, right? And the additional senses like balance, pain sensitivity, sensing whether or not we need to empty the bladder or bowels, and sensing where your body is in space… well, those should just work. Right?
The majority of people I hear talking about autism (from outside our community) seem to believe that autism is about being insensitive, non-empathetic, having no sense of others or the world around us, and being unable to relate. We’re “impermeable” to them — solid blocks of concrete that can’t let anything in.
We’re logical, because we don’t “get” the whole emotional thing. We make decisions with our heads, because our hearts are shriveled up, stunted, and like the Grinch, three sizes too small. We don’t have capacity for the “soft” sides of life, according to some — including leading researchers (who shall go unnamed, so I don’t give them any more visibility).
In a recent post, I proposed that our logic actually stems from the fact that, as autistic people, we are so sensitive — to physical sensations, as well as emotions and empathetic experiences — that we have to learn how to manage the flood of all that sensations that are constantly intruding on our experience… or else.
I know I’m not the only autistic individual who finds life a repeated assault on my senses, with my vision and hearing and sense of touch elevated… even while I tend to have very little sensation of balance and where my body is relation to the world around me, and other senses — like taste and smell and the feeling of striking something so hard I bruise — are subject to extreme variation.
On top of it all — what joy! (not) — the emotional floodgates unleash torrents of sensed experience that drag me from ecstatic highs to the deepest, darkest pits of extreme lows, sometimes in a matter of minutes. That’s how I know not to pay too-too close attention to my mood swings, and not to get too down by my depressive episodes. They pass. I know all too well, how quickly (and inexplicably) they pass. That knowledge has kept me alive, through all the times I wanted to end it all. I’m still here, because I hang onto that transience… and I hold out with curiosity.
That spiky autistic profile is not just about skills and abilities. It’s also about experience. Sensation. Permeability.
Yes, permeability. Being open to the world in unseen ways, being affected by it, impacted by it, shaped by it, in ways that no one else can see. That invisibility is partly because I’m stoic throughout. I’ve had to learn to be stoic, because a little girl who acts out, is a little girl who gets punished. Pushed and pulled — which is the equivalent of being beaten, when you have tactile sensitivities. Corporal punishment, doled out at the hands of people who probably had no idea how much they were really hurting me.
The whole world has no idea how much it’s hurting me — and so many others like us.
Second reason is because apparently non-autistic people can’t actually relate to anything that doesn’t have to do with their own personal experience. How strange, that they label us as the empathy-impaired sorts. Untrue. Untrue in the extreme. It’s the other way ’round. I feel everything. I sense everything. I participate in the cesspool of human emotions and experiences, without ever wanting to. I’m permeable. It all gets through. I only wish I were as non-empathic as I’m purported to be.
I have to protect myself. That much is so, so clear, after the past few weeks. It’s been a trying time, and I’m tired. I’m worn out. Depleted. Not only from the constant activity and the increase in social interactions (including a shit-ton of conference calls, reminding me yet again how much I hate talking on the phone). It’s been incredibly painful. But what to do? It can’t be helped. If I want to keep my job, I have to take hit after hit, and keep coming back for more. I have to put on my stoic face, remind myself it’s not forever, and step up… to get slammed. Knocked around. Exhausted, wiped out, drained… and then told I need to give more. Do more. Be more. Be like everyone. Be like normal people. Be a team player. Step up. Step up and take the hit. Everyone else is doing it, so get in line and take your daily medicine of pain. Just like everyone else.
Except I’m not just like everyone else.
I have to protect myself.
Protect myself from their inefficiencies that are making everything So . Much . Worse.
Guard myself against their bad behavior, their oversights, and especially against their emotional outbursts.
Deflect their emotional neediness, their grasping, cloying need for reassurance (especially with this fucking election going on).
Shield myself from their pettiness, their infighting which makes everything that much worse and prolongs the process of resolution.
Heaven help me, I need to be on constant guard. I’m tired. I’m over-extended. I’m a lot more permeable than usual.
And it’s not just the bad stuff I need to guard against. It’s also the “good” stuff. There are certain people around me who are drawn to me… they have that hungry look in their eye, longing for connection… and they don’t know how to do it without bringing sex into it. It’s a danger. They want to engage in that way. They’re looking to connect. And they want to do it in ways that damages their marriages – and could compromise mine. It happens with men. It happens with women. It happens with just about anyone I know who feels vulnerable and worn out, and looks to me to ease their pain… to fill up a part of them that gets so depleted by the ways they choose to live their lives.
I have to be careful, because the shared sense of connection can fell like I’m sharing it too, when I’m not. It’s easy for me to overlook that phenomenon. And a deep sense of shared connection (which I have by default) can escalate into something more than it ever should be. It’s happened before. I’ve gotten in trouble before. And now I know better. I also know that it’s the kind of thing that I need to guard against, because I’m aware. I’m a hell of a lot more aware than the non-autistic folks who are just oozing a need to connect… emanating their hunger for intimacy that they think can be satisfied by a romantic interlude.
That cannot happen. And as uncomfortable as it is for me, when I realize it, the best thing is to — yes — realize it. And nip it. Nip it in the bud. Keep things professional. Keep things distant. Boundaries, mate. Boundaries. Friendly, but not overly familiar. Keep it clean. Keep it clear. Because I can. And they can’t.
The onus for managing the dynamics between others and myself typically falls on me. The adult in the room is responsible for the behavior of the children, and neurotypical folks strike me — quite often — as children. Immature, prone to peer pressure, and sexually inexperienced — not so much with activity – though that’s often the case – but with their sexuality, in general. They don’t have a lot of inner monitoring or management skills, and so they’re more than a little impaired. To keep myself safe, and also keep things from turning into something that’s oh-so wrong, I have to “ride herd” on the dynamics… steer them in the directions I’m most comfortable with.
It sounds unfairly burdensome to me. It probably does to you, too. But what’s the alternative? To seize each “teachable moment” and evolve the neurotypicals around me, to better acquaint them with what’s really going on inside them, train them to notice when they’re being “emotionally incontinent”, and shepherd them along the path to self-enlightenment? Not gonna happen. Also, consider that when I’m in the thick of it, I’m over-taxed. And that means my processing time is slowed. And I stop being able to verbalize. I stopped verbalizing the other day, when I melted down over a particularly challenging series of events. Seizing teachable moments only works if you’re not prone to selective mutism.
So, I take things as they come. And I remind myself repeatedly that “It’s not me. It’s them,” when I’m feeling rushes of emotion and reaction that do not seem consistent with my own perspective. It happens. I’m permeable. I have to remember that, so I don’t lose myself in the sea of other people’s runny emotional muck. Because shutting myself down is not an option. If I do that, I lose my most reliable connection to the world around me — my orientation, my advantage.
If you want the highs, you have to manage that lows. If you’re going to be permeable (and we don’t always have a choice), you have to recognize the dangers, the risks, and learn to work with them.
I’ve been thinking about this a lot – especially lately, in light of my complexifying relationship to autism. Do I call myself “disabled”? Do I accept it as a condition that limits me? Why am I so reluctant to just adjust to that, and integrate that as part of my experience and identity? I’m deeply ambivalent.
I think part of it has to do with how I’m not permanently disabled by autism. My Aspie life is more akin to running a marathon on a bad day, and a 10K minimum on a good day. It makes things more challenging for me. It saps my energy. And many times I feel like I’m wobbling around after a mile-long sprint up a very steep hill. But it passes. I do have enduring executive function issues. But I know how to fix them. I’m working on them — as well as the rest of my life.
I guess I feel like calling myself “disabled” does a disservice to folks who truly are struggling with many, many aspects of their lives on a regular basis. I know I’m not supposed to compare myself to others, but when I do, I come out looking not at all disabled. I mean, seriously, if I just take good care of myself and get enough sleep and eat right and keep exercising, use my supports, and learn as I go, I can have a great life. I in fact do have a great life.
That’s not to say that I don’t have issues which are temporarily disabling. I have huge problems with communication, at times, and meltdowns (while rare, nowadays) are a force I need to reckon with. I don’t get jokes. I have trouble figuring out when to talk on the phone. I hate the phone, period. And some days, the best I can do is just muddle through… or go back to bed and rest till I’m functional again. I am at increased risk of exploitation, because I can be so trusting and naive and mis-read social cues. I’m sure I have over-paid for just about everything I’ve ever bought, because the thought of negotiating never occurs to me in the moment. I’ve really had a terrible time, in the past, and I’ve had to work through a whopping case of PTSD as a result of the “excitement” and “adventures” of my youth.
Autism for me can be disabling at times. It has brought me up short many, many times. But am I disabled? I wouldn’t say that — in fairness to people who truly are.
I’m one of the few people I know who actually understates their difficulties. Most people I know have an “enhanced” view of their own struggles — even the folks who appear to have the most advantage, the most skills, the most money, of the population. And it makes me wonder about the nature of our difficulties, and how we see ourselves as advantaged, disadvantaged, privileged, oppressed. I can’t speak for anyone who’s not in my demographic … so that limits how much I can responsibly say. But I’ll say what I can, because I think it’s important to consider — especially when we talk about privilege, disability, and the assumptions we make about How The World Is.
There’s all kinds of talk going on about white privilege these days, which is refreshing to me. On the other hand, I know a lot of white folks who absolutely bristle at the idea that they are any more privileged than others. The very suggestion really offends them. Even though it seems quite obvious to me, they take deep (and sometimes incensed) exception to the very idea that they have an advantage in life.
After all, they have difficulties. Their lives are not a cakewalk. They really struggle with certain things, and I don’t doubt they experience a great deal of pain as a result. I think what obscures our vision, sometimes, is that our difficulties may make it seem as though we’re not favored or advantaged (privileged) in the ways we most long for. We wish we could get special dispensation from the world, but things are tough all around, and we don’t see any evidence of that being the case.
So, we can think of ourselves as struggling in significant ways without a safety net, when in fact we do have a lot of privilege to fall back on. In my case, I’m a queer woman who’s been intermittently disabled over the years, working hard to make ends meet without a college degree to back me up. I’ve been broke, I’ve been well-off. Now I’m just barely above the “broke”line again. So, that’s not always easy. It makes me vulnerable. But my vulnerability is very, very different from others’.
Case in point: I was technically homeless in the winter of 1990. I walked out of a bad relationship with a duffel bag of clothes and the friendship of one person I could rely on. I was walking around the snowy streets of a major city (in a fairly drug-infested neighborhood), looking for a doorway to sleep in, in case my one contact couldn’t help me. I got lucky. They were home, so I didn’t have to spend the night in a doorway. I was officially homeless for a few weeks, while I looked for my own place. Had that one friend kicked me out, I would have been looking for another doorway.
The thing is, my homelessness was very, very different from that of a Black woman whom I and some friends helped to a shelter, where she was going with her three young daughters. She was apparently leaving a bad situation at home, as well — and it seemed to me that she’d hung in there as long as she could, for the sake of her kids. No, she did not want to talk about it. At all. It seemed clear that she had to go to a shelter, because of her situation. She couldn’t just take her little girls with her out onto the street. God only knows what became of her family. I, on the other hand, was able to pick up and leave a bad situation, just a month or two later, with a sense of elation and hope, not dread and desperation.
My situation was a passing inconvenience, and I knew that because I was a young white, middle-class woman who nobody guessed was gay, I could expect special consideration from others — especially from white men middle-class men who may have seen me as a potential partner. Not that I was taking advantage of that, but I was always so very aware that my homelessness and my difficulties were temporary hardships, at best, which others (white others) would jump at helping me solve. I got my divorce for free, because I worked at a law firm. I got a few pieces of furniture for very cheap, because someone at work told me about a going-out-of-business sale that was happening elsewhere in the office building. I could fall back on an informal network of white folks who looked out for each other (especially attractive young white women), and get the support I needed. I used that network to find a room for rent in a nice house in a safe (white) neighborhood. And I could walk around late at night without too much concern, because young white women especially were protected in that area by men and elderly women who kept a watchful eye.
This is why I am reluctant to call myself disabled or disadvantaged — because beneath the surface, there are forces which look out for “their own” and mitigate the impact. And those forces tend to favor people who look like me. That’s something that precious, precious few white folks are aware of. It’s not that we all have it easy and cushy and whatnot — there is just a whole lot more that we can take for granted… and often never suspect that others can’t.
I can also take for granted that, even if I’m wearing very thin and am having trouble balancing, tolerating light and sound and touch, can’t make myself clear (or can’t even talk at the moment), and I can’t understand what anyone is saying to me… if I just take care of myself, rest up, and use my tools, I can restore my functionality to acceptable levels. I am not permanently knocked out of the perpetual competition that can be life. I just usually feel like I’ve just run a 10K; I’m wobbly, sore, weary, and I don’t have a ton of energy to spare on fruitless pursuits.
My disadvantage is far more of a difference, than it is for many, many people. And while my situation may be intermittently disabling, the last thing I want to do, is compromise their position because I’m showing up calling myself “disabled“, when I can clearly take so much for granted, than they ever could.
I’m supposed to get together with some Aspie friends tomorrow to hang out in one of the cool spots in a nearby city. I would love to go. I love the idea. But I’m done. Just done. I’ve got a lot of stuff rattlin’ ’round in my head, that needs to be seen to. I’ve been so caught up in bureaucratic red tape, along with the moral outrage that anyof this is happening, as well as a sudden upsurge in busy-ness at work, that it’s drained a lot of life out of me.
The thing I have going for me, is these ideas that are cookin’ in the background. There’s some really interesting stuff brewing, and that gives me hope, even as I wrangle the real-world non-sensicality I seem to be marinating in, right now.
In the clarity of my own mind and my own logical ways, I find tremendous relief. When dealing with non-autistic people who have wrong information (together with no apparent wish to get the right information), it feels like I’m literally losing my mind. That’s probably the worst thing… The willful perpetuation of rank incompetence, completely unencumbered by awareness, regret, or the desire to remedy the situation.
I’m also working at getting my bearings after my autism assessment. I hadn’t realized just how hermetically sealed I’ve been in the offline world – how much I work at keeping things “under wraps” — especially with healthcare folks. That includes doctors, specialists, as well as therapy folks. And it extends from my providers to my partner’s, as well. Pretty much any and all healthcare professionals of any ilk, who are in a position to seriously mess me up with medications, bad advice, misdiagnosis, etc.
It’s pretty difficult to communicate and work effectively with people you fear and mistrust, and with whom you feel very little connection, because they are either unable or unwilling to see you for who you are and treat / interact with you accordingly.
Same goes for bosses. Work situations. Coworkers. I’m fortunate to work in a place that’s chock full of Aspie types, so I’m not out of place. But there’s still a whole lot they don’t get about my situation, and I’m not about to tell them. Like that business trip back in May, when I had to “work” the convention, standing for hours each day in a massive expo hall, suffused in blinking lights, loud noises, milling crowds, and a steady stream of passers-by whom I was supposed to engage and bring into the booth to discuss at length with them. Oh. My. God. It was awful. But everybody acted like it was no big deal. I did it, but Lord, how I suffered in the meantime.
And nobody but my partner actually understood just how grueling it was for me. Not my doctors, not my therapist, not my coworkers, and certainly not my boss, who thought it was all tons of fun.
I made it through in one piece, but I paid in a very big way. And the whole time I was there, I was on extreme high alert. I may have to go back and do it again next year, too. Because I was so successful at it. Great for them. Terrible for me.
Well, at least I didn’t melt down around any of them. That’s a huge plus. And I managed to remove myself at semi-regular intervals to recover in the quiet of my room, so that mitigated the sheer hell of it all.
I just wish I’d had a better grasp on how much my autism factors into those kinds of situations, so I could have been more confident about the strategies I was using. Part of the problem of being un-diagnosed, for me, is that it makes it easier for me to dismiss my issues and not even acknowledge them, not factor them in. I always have this “out” in the back of my brain saying, “Well, nobody official has actually said you’re on the spectrum, so let’s disregard the Klaxon alarms going off with you right now.”
That remaining 2.275% doubt in my mind allowed me just enough room to Ha-Ha! go on my merry way, dancing along the edge of the cliff. Fortunately, I didn’t fall over the edge.
Now, though, that’s not conveniently available to my little brain anymore. So, I have to pay attention. It’s non-negotiable. And I have to come to grips with the actually disabling aspects of my Royal Aspie-ness. It’s a stretch for me to actually consider myself disabled, and maybe it’s something I need to work towards. But truth be told, there are really significant traits that are disabling to certain aspects of my life. I hate asking for accommodations, and I hate having to navigate the social minefield of explaining my limitations to others. It’s one thing, if I’m working things out in my head. It’s another, if I have to explain things to others.
Fortunately, even if I can’t really explain to others what the deal is with me — and they might not believe me, anyway — I can work things out in the clarity and logic of my own head and figure out ways around situations on my own. Rather than battling against the incessant lights and noise of an expo hall, I can build in time away from it all, ducking out to sequester myself in a closed bathroom stall… getting something to eat or drink off the expo floor… making sure I have enough alone time to recharge and get my head back on straight.
See, as debilitating as my Royal Aspie-ness may be in the context of the outside world, in my interior world, it’s a joy like no other. It’s a constant wellspring of delight and elation, an oasis of fascination and curiosity and order and logic in the midst of a severely disordered, disconnected, ugly, and unspeakably ugly world. It’s my refuge, it’s my domain. And I always have it there to draw upon, when things around me are closing in and feel like they’re crushing me flat.
During that gauntlet of an expo, I had many hours of silent contemplation of the mountains to the east of the city, sitting in a darkened room with only my own thoughts for company. I had times of blissful solitude in the early morning light, as I went for a walk before anyone but the sun was up and about. I had some really great interactions with individuals who were eager to chat about their favorite things and gave me some welcome insight into what their own worlds were like. I got nearly enough sleep. And when I returned, I had no trouble sleeping at all — because I was home again, safe and sound.
And despite all the difficulties it causes me (or rather, the world causes me because it doesn’t “get” me), I wouldn’t trade my autism for the world.
The source of some of my greatest vulnerabilities is also the source of my greatest strengths. And on the balance, it’s worth all the trouble.
It is so worth it
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An interesting discussion has been developing between myself and a clinician who’s help me with executive functioning issues. This clinician is very smart, she’s very quick, and she’s extremely compassionate. Best of all, she wants to do the right thing, and she bends over backwards to help her clients / patients.
I started working with her after my old executive function coach moved on to another job, and the results have been mixed. I have to say, things are getting better, after a few bumpy initial months, which included meltdowns and shutdowns and some serious reservations on my part. I don’t think I ever seriously considered terminating with her, because I know her heart is good, and while she is somewhat young (she’s been practicing for a number of years, but in some developing nations she’d be young enough to be my daughter), she has a demonstrated interest and ability to learn and adapt, and that is probably the most important trait that I look for in a clinician.
One of the things that I had been hoping for when I started working with her was that her experience in assessing and working with autistic kids would help her to better understand and work with me. I googled her and found “autism” associated with her, and it’s one of the kinds of assessments she does. Interestingly, despite my not masking with her the way I did with the prior clinician, engaging in some pretty obvious tactile stimming, rocking, making minimal eye contact, and some periods of extended mutism, to this day she has never once directly mentioned anything to me about Aspergers or autism.
I have to say, I’m surprised. I regularly run into people who have a working familiarity with autism and Aspergers who start discussing it with me in a way that implies they just assume that I am on the spectrum. Those kinds of interchanges always intrigue me — and admittedly make me a little nervous. I never quite know what to expect when those kinds of conversations start, but without fail till now, every time someone has mentioned autism or Aspergers to me and tried to engage me in a conversation about it, they have been sympathetic, sensitive, and compassionate. It was never used against me in a way that implied that I was “less than” or somehow impaired.
So basically, I have been lowering my shields with this clinician, basically being my Aspie self in her presence. She asked for it, after all. Early on, she asked me how I would want my life to be, if I could get my own way. This was in relation to me telling her about how much I regularly do to help my partner with her health issues and other things she needs to get done in the course of the day. The clinician — like a number of others I’ve worked with — was all keen on me asserting myself more, “practicing self-care” and taking myself into consideration as much as I do my partner.
One of the main things that helps me, is not having to mask and blend and camouflage. I didn’t tell her that, but I decided it was the one thing I could do for myself when I was working with her that would help me. So, I have not been working overtime to manage my issues so they are not obtrusive. I’ve just let it all hang out, so to speak (what an image that conjures!). I’m basically just giving her all of the visual, verbal, and interactive clues that would show her that I’m one of those people on the spectrum who has certain issues that need to be taken into consideration as she interacts with me.
It doesn’t seem to be making an impact, however. She’s still pretty much interacting with me the same way as she was, months back. She still talks fast, she still presses me to verbalize Every . Little . Thing (Aaauugghhh!) And she doesn’t seem to pick up on my references to my sensory issues or factor them in.
But all is not lost. It’s taking a while, but I think we might be getting closer to The Conversation, because she has started to mention the hazards of certain types of diagnosis. She says she doesn’t want me to get locked into a diagnosis that’s going to be driven by a healthcare that doesn’t understand my situation. Could it possibly be a reference to An Autism Diagnosis? The suspense is driving me to distraction. My last clinician said something in passing to me on his last session with me about “getting a different sort of assessment” than the ones he’s done with me. An Autism Assessment, perhaps? I wasn’t quick enough to press him for details – the best I can do now is make stuff up in my mind.
The oblique references are getting irritating, I have to say. I seem to be swimming in a sea of roundabout allusions to my situation, rather than outright, direct references. And that doesn’t make things any easier for me. If anything, it makes me question my judgment. It makes me wonder if I really actually did hear her say that she thought that a more substantial diagnosis of a condition might work against me, and I wonder what exactly that meant.
Problem is, my processing speed is on the sluggish side, so by the time it sinks in, I’m sort of out of luck with asking any clarifying questions.
Anyway, I think I may know what is going on with her, and when I consider that she has been working with kids, or possibly young men, and probably – possibly – more than likely – no women on the autism spectrum him, her perceived hesitation makes sense.
Then again, maybe it’s just me making stuff up… again. Wouldn’t be the first time.
In any case, I don’t see her for another couple of weeks, due to summer vacations and such. So, I have time to think about this… or something completely different.
I recently read a great article by a mother who is “unschooling” her autistic kids – Possibilities. It talks about having “radical trust” for kids, to know what they need, to develop as they need, and to not resort to the usual pressures and enculturation and forcing them into neurotypical straightjackets, just to be like everyone else… and pass as yet another regular person just going about their regular life.
It’s interesting that I came across this, because I was just thinking earlier that day about how my very strict, rigid, constantly correcting upbringing did turn me into a successful imitation of a neurotypical, who passes easily in the non-autistic world, and is a productive member of society. I was out for my Saturday afternoon walk, and I got to thinking about how I haven’t been at the same kind of disadvantage in the everyday mainstream world that so many autistic folks are, because I was constantly, continuously guided and instructed and commanded about the right things to do, under a variety of circumstances.
Never once, while I was growing up, was there ever any question about the right way and the wrong way to do things. It continues that way, to this day. When I visit my parents over the holidays, I frequently interact with their neighbors and others in the area who are quick to point out when I’ve done something wrong. When I’m not dressed properly for the weather. When I haven’t maintained my car properly, and the air in one of my tires is low. When I have spoken out of turn. When I have put something expensive in my shopping cart, while there’s a more economical version right on the store shelf in front of me. When I have parked too far from the curb. When I have locked my car doors in a neighborhood that is safe as safe can be.
Where I grew up, there was never any question about the proper way to do things. And there was never any hesitation among friends, family, teachers, ministers, neighbors, and complete strangers, to point out the things you did that were wrong. It was both stifling and soul-crushing, and refreshingly candid. You never had to question where you stood with people. They made that clear. And if you stepped out of line, they made sure you knew how you could get back in their good graces.
Of course, some of us could never steer ourselves back to the straight-and-narrow. All of the kids in the family fled the area, and we situated ourselves in new surroundings. Two of my siblings moved to areas populated by people very much like the folks we grew up around. One of those siblings has had unspecified mental health problems, which haven’t abated in their entire life. If I were a gambling woman, I’d say the company she keeps has something to do with it.
But I digress. The benefits of growing up in an area like that (where I’d hazard to say there are a much higher concentration of spectrum-y individuals than in the mainstream), is that there’s never any question about how to do things, how to live your life, how to be a member of society, how to contribute to the world around you. You’re instructed and corrected and prodded and cajoled and intimidated and hounded and coaxed, from the moment you wake till the instant your head hits the pillow. And as exhausting and distressing as it can be, it still trains you to conduct yourself in the world in a fitting manner. Moment after moment, day after day, month after month, year after year. And no bad behavior is tolerated.
Basically, you’re schooled.
And the other day, as I sauntered down the back road leading away from my house, I was feeling pretty good about my progress, thus far. I’ve been able to piece together a pretty good version of “the good life” – at least on the surface. I own a home (well, technically, the bank owns it). I have two cars (one of which is owned by another bank, which I’m paying off). I have a full-time job with a good company. I’m in a 25+ year marriage that’s still going strong. We are safe in a nice town, in a relatively prosperous part of the planet, and we have every comfort at our disposal. Not all of them are affordable for us, but if we had to have them, we could figure out a way to get them.
On the surface, nobody believes I’m autistic. After all, I’m a woman of a certain age who can interact with others successfully. I can do small talk. I can make eye contact, if I have to. I can relate to others. I’m relate-able. I don’t stim openly in front of people. I do tend to talk people’s ears off, when we start discussing the 12th century renaissance or user experience in web-based applications. I don’t collapse in horror when the fire alarm goes off at work; like everyone else, I hustle to the exit, hands over my ears. I don’t demonstrate a lot of the stereotypical traits often associated with autism. I pass as “normal”.
Because I’ve been trained.
Yes, I’ve been trained, I would imagine in a similar way to ABA – through constant feedback, continuous consequences, a steady stream of correction for when I’ve done things wrong, and the occasional reward for when I’ve gotten it right. Truth to tell, the greatest reward for getting it right, is just being left alone – I’ll take that. Just being out from under the scrutinizing eye of the culture police is the most delicious of reliefs.
I’ve been schooled. With the social equivalent of a ruler-clutching fist hovering over me, ready to strike at the slightest provocation. With the constant, constant, incessant attention to every detail about my life that indicates whether I’m Getting it Right, or I’m Doing it Wrong. I’ve been conditioned by the equivalent of a red-hot poker, or let’s say a cattle prod, to do things a certain way, to say things a certain way, to carry myself in a certain way, to embrace certain values, to develop a certain routine. To measure myself along the same lines as the rest of the world does – the rest of the neurotypical world.
I felt pretty good about that, too, as I was striding along that country road. Then I got back home, read the article, and I’ve had 24 hours to think about it… let it sink in… digest it… and realize, my supposed success has come at a very steep price. I was a pretty tortured soul as a kid. Depressed much of the time, isolating, fearful, anxious, just aching to get free of that world. I had so, so many problems with just about every classic point of autistic difficulty, but I suffered in silence, hiding it all, burying myself in religious fervor, in hopes it would “save” me from my “sinful” nature. I was in constant pain of one type or another, and was hurt and injured in countless ways. For all my supposed success at fitting in and fulfilling my social role, it came at a steep price.
And I’m still paying that price, even as I distance myself from the neurotypical ideals and step more fully into my autistic identity. I have tremendous difficulty doing a number of things independently and properly, but I have even more difficulty admitting it and asking for help. I have been sorely in need of support, many, many times in the course of my adult years, but I was too ashamed, too terrified, too confused to even begin to understand why that really was… or admit the depths to which I was floundering. I’ve been treading water ever since I left my parents’ home in 1983, and only in the past several years have I actually learned how to take a few strokes and begin swimming on my own.
So, for all my supposed success, for all the apparent effectiveness of my upbringing, that schooling had a steep and violent price tag attached. And I’m not sure I’ll ever be able to get out from under the spectrous threat of social retaliation. Like a fog it hangs over me, that fear of retribution, that fear of shaming, that fear of ridicule and public humiliation. Like a heavy wet woolen blanket, warm though it might be, it wears me down, it pulls me down, and there is no sun in sight to dry it.
I’m through feeling chipper and proud of my “functional” state, thanks to my violent upbringing. I’ve been schooled. Now I need something entirely different. Let the unschooling begin.
I think I’ve figured out what the deal with neurotypical “small talk” is all about. See Mom and Dad? My cultural anthropology training has come in handy!
In my 4+ decades of actively studying neurotypical / allistic folks, I’ve long puzzled about why people engage in small talk. Who cares about soap operas (on television and in real life)? What difference does it make, if your windshield has pollen all over it? Niceties about this-n-that around the coffee maker… how aggravating! How time-consuming, without any perceivable benefit for me. And sitting through extended accounts of weekend activities just drains my energy – energy I could be using to do something productive. Of course, I smile through it all and do a fantastic job of feigning interest, but it’s not my first choice.
And yet, despite its very clear miniscule ROI, despite its fruitless frittering away of precious, limited time, when essentially nothing useful is said — at all… small talk prevails. Why?
I finally figured it out, over the past few years, in part thanks to the Porges’ “Polyvagal Theory”, as well as my own personal researching and “field” observations of allistic people in action.
Here’s the thing — the neurotypical way of life is intensely anxiety-producing. The world they’ve designed and built centers around myriad anxiety-producing activities, such as setting unrealistic goals and objectives which no normal person can ever achieve. It seems they have a fondness for “pseudo-Darwinian” culling of the herd, and forcing everyone to constantly strive for impossible goals… so that less capable individuals (i.e., less favorable mating partners whose proliferating DNA could weaken the rest of the population) don’t get to occupy positions of power and influence (and possibly get more mating partners). Never mind that Darwin pointed out that adaptation and cooperation are what ensures survival of the species — neurotypical / allistic folks seem to ascribe to a dominance paradigm that excludes anyone who’s not a stellar example of a copulatory partner.
So, playing in their field, according to their rules, is necessarily going to tax and test you — to see who’s the fittest and who will most likely survive… a Zombie apocalypse? getting stranded on a desert island? fabricated teamwork scenarios for a weekly television series? And also to get rid of those who “aren’t up to the test”.
What’s more, the allistic world is heavily weighted towards a GO-GO-GOmentality. Adrenaline rushes. High energy. WooHoo-ness in the extreme. That’s going to take a toll on your nervous system, right there, because you can’t keep burning all your fuel in constant fight-flight-fun mode and never recharge. But the NT world seems centered around depleting every possible resource you have… then hopping everyone up on artificial stimulants, just to “keep up”.
Keep up with what? Oh, never mind.
Anyway, with all the adrenaline addiction and stress and strain placed on the human system, you’ve got a shit-ton of frazzled, anxious, nervous people walking around on the verge of a panic attack. After all, they might not be “up to the test” and get kicked off the island. And they don’t want that.
So, that’s where small talk comes in. It’s not designed to convey any particular information. It’s not about information at all. It’s about:
Testing the relative danger of your surroundings to see if you’re being threatened,
Making sure others know that you’re not weak, but you’re also not too strong, and
Soothing the autonomic nervous system with stimulation of the vagus nerve apparatus.
Testing the relative danger of your surroundings to see if you’re being threatened by chatting about some lame subject, allows you to gauge the relative “stability” of people around you. It lets you see if they’re feeling good or aggressive or angry or tired or frustrated or some other way that could impact you later. Exchanging a mindless, “Hey, how ya doin’?” with no expectation of a reply other than, “Good, thanks – yourself?” serves a very valuable purpose. You can detect the general mood and stability of a person by how they respond to you, and you can either go shields-up or take the offensive, or beat a hasty retreat, based on the mood you detect in the other person. Small talk, in this case, is about sending out “feelers” to see what the person approaching you is likely to do / say / feel / respond with.
Making sure others know that you’re not weak, but you’re also not too strong is crucial. Because you have to show that you’re a capable and well-integrated part of the environment you’re in. You don’t want to come across as a sappy little milksop who’s just going to bitch and moan about your life, but you also don’t want to present like a hyper-dominant goon who’s difficult to interact with (and work with). You don’t want to brag and posture, because that can put people off. But you also don’t want to look submissive and easily bullied. It’s all about establishing that you’re dominant in your own life, but that you won’t encroach on others’ quadrants. What’s more, you want to show your humanity — struggles with unruly children over the weekend, hassles with house repairs, negotiations with contractors and other handyman types. Small talk is a way of cementing your public persona in the midst of others who are looking for how best to interact with you.
Soothing the autonomic nervous system with stimulation of the vagus nerve apparatus is probably the biggest piece of it, though. In the midst of all our anxiety and nervousness, we have a way to calm ourselves down and stimulate the other side of our autonomic nervous system that helps us rest, catch a break, and digest that big meal we’ve just eaten. It’s the vagus nerve — or nerves, depending who you talk to — and that longest nerve in the body travels from the brain, down the center of the body, and into the gut, where it spreads out in all directions. It goes directly past the esophagus and vocal chords, and when we talk or sing, it gest stimulated — and kicks in a process that soothes our frazzled nerves. It’s one of the things that makes singing or humming soothing to people. And in my observation, it’s what turns my extremely nervous friends and family into chatterboxes when they’re freaked out.
So, small talk actually does serve a purpose in the dominance-driven, anxiety-producing pecking order of the neurotypical / allistic world. In a way, it’s like allistic stimming. Yeah – that’s it, exactly. But unlike autistic stimming, they insist that everyone else has to join them.
I just wish they’d leave me out of it, and let me live my life in peace without needing to take part in this game of theirs.
I continue to be amazed by how much superstition and confusion and really, really bad information there is about Autism and Aspergers.
I don’t do much Googling of autism, because there is just so much one-sided information that has a whole lot of money behind it. And I don’t go on Facebook hardly at all, because there are so many neurotypical people who are affected by it, who all seem to be in a state of perpetual high-alert… and yet I don’t see a lot of effort made to understand autistic spectrum conditions at the very core. Maybe it’s happening, but I don’t see it.
And I don’t have the energy to seek it out. That’s what Twitter’s for, I guess.
But I’ve had to stay off Twitter more, lately, as I just get too drawn into it, and I lose track of everything else that I need to be doing. It’s a vicious cycle. Plus, Twitter on my tablet has somehow slowed to a desperate crawl and it’s hard to use. So, I un-installed it, and now I can listen to music without the constant interruptions from other apps connecting in the background.
I did a lot of stuff, this past weekend. Pretty much off my schedule. And it kind of blew up in my face with a couple of meltdowns on Saturday morning and Sunday evening. I’ve been melting down more frequently, in the past several months, and I need to do something about that. I know what things lead up to meltdowns, and I need to actively manage them, for my — and my partner’s — sake. She’s back to being afraid of me again. It’s been years, since she was really afraid of me, but apparently, my behavior has been intimidating enough for her to feel like she has to constantly walk on eggshells around me and “manage” me.
This is not a good feeling.
So, what to do? Well, first off, I need to realize just how much this summer is kicking my ass. It’s HOTa lot, which means my clothing is uncomfortable — any clothing is uncomfortable. Tempts me to join a nudist colony. Also, I’m not sleeping all that well. I crank up the air conditioner, but it doesn’t always work. I sometimes lie in bed for an hour, trying to get comfortable, before I can “get down”.
Aside from the heat, there’s the light — and activity. Bright sunlight flashing at me from every reflective surface, especially when driving, really sets me off, as I’ve become painfully aware, lately. Running errands on Saturday morning, it was a freaking gauntlet, dealing with sunlight glinting off every chrome bumper or shiny glass windshield / window. I really noticed it more than usual. All the motion, all the movement… traffic, people on bicycles and motorcycles and walking along the road, birds flying around and singing/calling and rabbits running across the road… You’d think they didn’t have anything better to do, than just be and do what they wanted to be and do.
And of course, I ended up frazzled and frayed, and then I talked to my disabled sister about old family stuff that she’s dealing with. She’s got a ton of health issues and she’s waiting to hear back from the judge about her Disability claim, which is stressful for everyone, because she’s on the verge of losing her home, if she can’t get some financial relief. I helped her out a little bit — enough to keep her afloat. That was the least stressful aspect of our connection. Doing a retrospective on how our parents did such a terrible job of taking care of us, beyond keeping a roof over our heads and food on the table… well, that was pretty grueling. And I’m still feeling the burn on that one.
The main thing that made my childhood and youth and early adulthood so demanding, was the total, utter lack of information about autism — as well as the comprehensive dearth of understanding that most of us were / are on the spectrum. I look around at people today who have access to autism information, who have diagnoses, who have resources at their disposal — if not social services, then at the very least social media support and an internet chock full of information from ActuallyAutistic people about what it’s like to be on the spectrum… what helps, what hurts… etc.
And I’m confused. Because growing up on the spectrum sucked supremely at times, because there was no awareness. And I wonder what kind of a difference it would have made, had we known then (40 years ago) what we know now. My mother could have understood that her intensely impacted sister was not just trying to be difficult throughout their childhood — she needed help and support and understanding. My mother might have gotten a clue about her own sensitivities and needs for support and more actively managed her situation. She might have realized that I was in a different “quadrant” of the spectrum, in terms of sensitivities, and not been as rough with me all the time.
I might have been more cognizant of my balance issues, my vestibular instability, and not taken as many chances with climbing and jumping and doing all that stuff that got me injured. I might have had a way to understand why I was melting down the way I was, and found ways to not humiliate myself on a regular basis. And school… what might that have been like, had people realized that my talents were starkly “uneven” for a reason other than laziness? My fearful siblings might hate me less, than they do today. And my one sister I talked to the other night might have gotten more consideration from my autistic parents, if they’d realized that they had difficulties coming to terms with intense emotion and could factor that disability into their interactions with her — with all of us.
Just a little information can go a long way. We didn’t have any, back then. None. Zip. Zilch. Nada.
And I look around me, now, at people who have worlds’ more access to info and insight than we ever hoped to have, back then, and I wonder — What The F*ck is up with that?
It’s never easy, of course, and I’m in no position to blame or judge. But seriously, there’s something amiss, when so, so many ActuallyAutistic people are talking in detail about their lives, offering insights and information, and there are organizations and researchers who are pursuing productive lines of investigation (outside the whole vaccination controversy) about how autistic lives can be understood and supported… and yet, we’re still “lighting it up blue” and praying for a “cure”.
It’s just kind of embarrassing, to tell the truth. The U.K. (and much of northern Europe) seems decades ahead of what’s going on in the U.S. Okay, so France has a bad habit of committing autistic people to mental institutions, and since I don’t live in Europe anymore, it’s no good to rant about it. But it seems like the U.S. is stuck in the dark ages, still. And people in a position to change that, don’t seem to realize it — or realize that it needs to change.
But it does. I’m so sick and tired of reading accounts from people who have been misunderstood, poorly served, marginalized, and disenfranchised from their own lives, simply because their brains work differently than others. I’m sick and tired of hearing people wail and moan about the awfulness of autism, when they’re actually making the problems worse by not paying any attention to what their kids are clearly telling them. I’m sick and tired of people stressing us out constantly with the nauseating perpetual motion machine of hype and hyperactivity, the non-stop adrenaline push, the incessant noise and light and activity… the verbal bias that rules the mainstream world… and then wondering why, oh why, we melt down.
We know so much more than we used to. Why is that knowledge not modifying any mainstream, neurotypical behavior? In some places it is, with some grocery stores offering quiet hours in the U.K. But in the vast majority of places, nobody seems to really care at all that they’re creating toxic, needlessly taxing environments for people who are more sensitive than they are.
It’s just so irritating. And it’s needless. Especially for people who live with autistic folks, who flatly refuse to adapt their behavior or their environment to the ones who may need anywhere from just a smidge of accommodation to full-on re-configuration of the environment to feel human and function at their best.
I’m in a terrible mood. This summer is interminable. There are at least five more weeks left of it. August is my least favorite month of all. Even less so than March, which truly sucks in this part of the world.
Enough. I’ve ranted enough. Time to find solace in my routine.
Autism = extreme practice / system / doctrine of the Self.
For me, that’s the only — the only — way I can effectively create. And think. And live.
Other people’s input is fine for them to offer, but it’s for them. Not for me. I cannot abide having input from others into what I’m doing, while I’m doing it. Every now and then, I’ll make an exception for works that are intended for a wider audience. But the works I create for myself, and for the sake of creating — totally, 100% Autistic. and that’s absolutely perfect.
The danger, of course, comes from my developed way of relating to the rest of the world. I know I am different. I have no desire to conform. So, I keep myself to myself, and I meet others where they are. I model my behavior after theirs, when we are interacting. I meet them as they are, where they are. I walk through a foreign world, a stranger in a strange land, and very few people have an inkling that there is more to me than what meets their eye and ear. I speak a million “languages” fluently, and I “pass” as neurotypical with the best of them. I master their modes, which are not difficult to mimic, and I speak to them in their own vernacular. So we can meet, interact, and part ways without undue friction.
When in Rome…
I don’t do this because I’m afraid. I don’t do it because I have a gnawing need to fit in. I don’t do it because I’m ashamed of myself. I do it out of respect for the relationship, the connection, the interaction which becomes larger than the two of us and sets the stage for other interactions they have with the world. It’s bigger than me. It’s bigger than them. And it’s important. Because this is how peace starts — at the place where I know I am so much “enough” that I can check myself at the door and put myself at the service of the interaction, the connection, the humanity of the situation.
I am completely different from what most people think I am. Everyone has a different “version” of me in their heads, whether they know me in person, or they know me online. It’s not because I have no solid identity of my own. It’s because I have such a strongly solid identity, that I can put it aside for the time I’m interacting with others, for the sake of the interaction. For the sake of peace. I’m not neglecting myself. I’m seeing something larger, something brighter, something more valuable than just satisfying my own need to be seen and accommodated.
I have my limitations. I have may disabilities. I have my challenges. But in those times when the situation calls for strength, I can find that, too. And let that take the lead. Because it’s needed.
I am completely different from what most people think I am. And that’s fine. Everyone sees and experiences what they need most, so who am I, actually?
I’m autistic. I am completely self-referencing in all the most important ways that make me who and what I am. And that’s no more “disordered” or “pathological” than being a native Spanish speaker in a small town in northern Wisconsin.
Yes, I am treated differently. Yes, I am sometimes seen as too different for comfort. But that’s simply because nobody around me speaks my native language — not that I am any less intelligent, any less capable, any less human, than all the native English speakers of a certain dialect who never bother to learn my “language”.
I am a refugee in the midst of allistic neurotypicals, every time I leave the “home” of my inner world to interact with the standard-issue world around me. I am an expat, a changeling, a foreigner… a bit of an intruder, to be honest.
But unlike so many, I can always return to my “home”. The safety of my mind, my heart, my inner world which bears to resemblance to the ugly, hateful, divisive creation of individuals who are so desperate to prove to themselves that they matter and they exist, that they will destroy everything and everyone around them, just for a fleeting instant of relief from their own self-imposed misery.
And to that home I withdraw. I haven’t been doing that nearly enough, lately. I’m starting again. This weekend was a beginning. Re-training myself to retreat… to know when it makes more sense to fall back than to engage. Protection, pro-active protection from a world created by people who don’t care if everything goes up in flames… so long as they can believe they’re right.
I’ll be back. Of course, I’ll be back. But I’m also learning the value of postponing that inevitable resurfacing.