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.
Heaven help me and Creator forgive me (I’m sure they will)… I’ve declined to attend my nephew’s wedding celebration in August. It’s the ultimate familial infraction, because this is the eldest son of my only biological sister… my first nephew… who acts and looks like a poster child for a Tony Attwood book. If there’s any wedding I “should” be attending, it’s his.
But I can’t. I just can’t. The recent 4-day trip to my in-laws laid me out with multiple meltdowns that trashed any semblance of self-esteem and confidence I had. Over a week later, I still haven’t recovered. It’s going to take weeks to get back to my regular self, my super-effective, balanced self. By the time I’m back, this next wedding will come ’round again. And then I’ll be laid out again — because my own extended biological family is even more kinetic and chaotic than my in-laws, and they are highly interactive. It’s just too much. All that sensory seeking drama … no, thank you.
So, I had to decline. Plus, I declined my other nephew’s wedding that’s happening this weekend, and if I’m not going to one’s, I’m not going to the others. It would be playing favorites, and I need to be an equal-opportunity offender.
Offender… whatever. I have to take care of myself and my little family. I just can’t put myself through it. And I’m not putting my partner through it again, either. There’s no way. I think she had an even harder time with my meltdowns, than I did (if that’s possible). And it’s going to take weeks, even months, for her to feel some sense of stability around me again.
I have to keep my priorities straight. So, yeah, I’ll suffer the displeasure and disapproval of my family. I’ll steel my nerves against their slings and arrows and guilt-inducing sighs… and I’ll keep to myself that weekend, as it should be.
I really love my nephew and his soon-to-be-wife. I’d love to be there. I just can’t deal with the melee. I look forward to spending time with them — away from the madding crowd. Far, far away from it.
At least I know I’m not alone. There are plenty of other autistic and highly sensitive people who get overwhelmed by this kind of stuff. And who have to opt out, because it’s just too much. The price is too high. The cost too dear. And the “return on the investment” is minimal.
… good feelings can be as overwhelming as the bad.
I can’t name my feelings. I don’t recognize them. Don’t know what they look like. … I like words that sound as they should feel.
… I want to experience life in neutral. Not feeling anything much. For me, the absence of sensation is better than experiencing anything too jarring, too unexpected, too new. I want to move through life with no sudden movements. Sameness is my anchor. I want each day to unfold quietly and predictably.
That pretty much says it all for me. Each word. Each line. I can relate.
Sameness is my anchor, too. And a wedding in August in an intensely humid mid-Atlantic state, surrounded by milling crowds of people… well, that rips up my mooring from the quiet cove where I’ve anchored and sends me adrift in a strong current that leads directly to a waterfall. Who knows where the waterfall will take me? I don’t want to find out.
And so, while everyone else in my family is flying / driving / taking the train in to these events, gathering in loud, tactile, bright throngs of milling relatives (many of whom I don’t recognize immediately, ’cause, well, face-blindness)… I’ll keep to myself, continue to nurse my wounds and get myself back on track. Keep myself away from the precipice of depression and despair. Get on with my life. Fish in my own little cove, while the rest of the world jumps in their inflatable raft and heads down the rapids.
Question 31: I like it when someone describes the feelings they experience under circumstances similar to my own, because this helps me see what my own feelings might be.
Fact: Yes. I do.
Truth: I can’t say I really care much about what other people think — sorry… not sorry… their emotional state is none of my business. But it does really come in handy, when I’m trying to improve my understanding of others — and figure out how to imitate them. See, the reason I study these things is NOT because I want to be able to do them, myself. I don’t really care about that, to be honest. I DO want to figure out how to simulate those emotions, so people will stop pestering me about how I feel about things. I don’t know. I don’t care. Feelsare not my thing. But if people keep digging deeper into my feels, to see how I’m really feeling (ugh), it’s incredibly distracting. And it diverts attention and energy from the things I really want to be thinking about — objective facts and big-picture applications of minute details.
Question 32: My imagination is often spontaneous, unpredictable and involuntary.
Fact: Yes. It is.
Truth: But not in ways that make sense to most neurotypicals. I can “riff” on an idea and roam far and wide, conceptually… leaving them behind. I’ve actually been told I made people feel like their heads were going to explode. So, I mostly keep it to myself around neurotypicals. It’s safer for everyone that way.
Question 33: When helping others I prefer to assist with physical tasks rather than offering counsel about their feelings.
Truth: OMG, can we please stop obsessing about feels? It’s distracting and it keeps us from actually solving the Real Problems Of The World. I sometimes think that neurotypical life is centered around relieving the pain they’ve caused themselves, and all they really care about is making themselves comfortable, while their lives go to hell. Rearranging the chairs on the deck of a ship that’s not being steered… as it drifts right into an iceberg field. But hey, at least they have a good angle towards the sun, so they can work on that tan that will get them laid. Right?
Question 34: I have puzzling physical sensations that even friends/acquaintances/others don’t understand.
Truth: And it is hugely annoying/confounding, trying to explain this to my doctors, other (NT) people, or whoever makes the mistake of asking how I’m feeling. I’m much more connected to the world around me, than your average person on the street, and everything can come and go so quickly, I lose track of what I’m feeling, from one minute to the next. So, it’s better to not even try to put it into words.
Question 35: I get in a muddle when I try to describe how I feel about an important event.
Truth: Because there is no one simple answer. I feel every conceivable way — literally — about everything important (and unimportant) in the world. I can discuss this all in great depth and detail, if given the chance. But of course, I don’t get that chance much, because it confuses and disorients people who deal with 1-dimensional experiences of emotion. So, when discussing my feels, I generally pick one emotion that’s familiar and would make sense to the person I’m talking to, and I talk about that. But it’s just a tiny, tiny tip of my Asperger’s. There’s a shit-ton of more stuff under the surface, but who has the time for that?
Question 36: My imagination is usually not spontaneous and surprising, but rather used/employed in a more controlled fashion.
Question 37: I make decisions based on principles rather than gut feelings.
Fact: Yes. Yes, I do.
Truth: Gut feelings come and go. They can be myriad in the course of a few minutes. Why would you make decisions based on your gut, when it can’t make up its own mind? Then again, gut feelings — when given the time — can yield pretty detailed and well-supported decisions, based on a multiplicity of factors. I think we need to differentiate between fast-made decisions and long-considered ones. I do use my gut in many situations — but only if I have really ample time to sort through all the data. In the end, though, I use my head to make the decisions. My gut is more a receiver and transmitter of information from my overall system. My brain is command central, in terms of figuring out what to do with the information deluge.
But the rare times when I “go with my gut”, it’s generally right on. Intuition rocks — if it’s based on actual fact and verified experience.
Note: This is part of a 4-part series about Alexithymia criteria, as well as related thoughts about the “subcondition” in general. You can find additional content at the links below:
I’ve been thinking about alexithymia a lot, over the past weeks, and it occurred to me that the problem I have with naming my emotions and sensations isn’t that I can’t feel them at all (sometimes I can’t, but it’s highly variable). The real problem is that I feel so much and things shift and change with me so rapidly, it’s hard to put a single word to what I’m feeling. Even a handful of words.
What if the real problem is that the neurotypical lexicon for emotions and feelings is not sufficient to describe the autistic experience?
What if, rather than not having any words to describe what we feel, we don’t have the right words to describe what we feel?
And what would happen, if we had a wider vocabulary that actually encompassed our experiences, rather than a handful of — what — five or six different emotions.
What if the emotional vocabulary is failing us, rather than us failing it?
Question 11: When I am upset I find it difficult to identify the feelings causing it.
Fact: I can identify feelings fairly well, especially in ways that make sense to others.
Truth: This has only been possible after years of practice. I usually just pick a “ballpark” emotion to describe how I’m feeling – and I usually cue off the behaviors of others, to find out whether what I’ve said makes sense to them or not. I’m extremely sensitive to others’ “energies”, and I can often tell if what I’ve said makes sense to them or not. And then I adjust my descriptions to what I can tell is “working” for them. I can tell on a subtle level, if I’m confusing people, and I can adjust my expressions to suit what they need – and that’s the goal: successfully completing the social interaction, rather than actually communicating what is going on with me.
In a way, this actually comes in handy. Because not knowing what I’m feeling at the moment allows me to function well under conditions that otherwise make people highly dysfunctional. I can wade into impossible situations and think clearly in a crisis, because I don’t even realize I’m in a crisis. In this way, alexithymia works for me. It’s a real benefit and a gift.
Question 12: Describing the feelings I have about other people is often difficult.
Fact: It’s not as difficult now, as it used to be. I can do this pretty well, now.
Truth: Well, sure… Because I have both learned how to identify my feelings (in the “ballpark”), and I’ve learned how to express myself in ways that others understand. I generally keep a friendly-neutral attitude towards others, so as to keep things light and not overburden the interactions with me seeming to be angry (that’s my thinking face) or aggressive (that’s my excited face) or having some other emotion that others completely mis-interpret.
I can describe my feelings about others at work pretty well — actually a lot easier than in my personal life. Because a lot of what I feel mirrors what others feel. Someone who’s a pain the ass to others in my group is probably a pain the ass to me, as well. Likewise, someone who’s great to work with. I cue a lot off what others say they feel, and I check in with myself to see if that’s true. I sometimes “try emotions on for size” when it comes to others, because it’s a heck of a lot easier than coming up with my own versions. And it sometimes turns out to be true, anyway. It’s a process. A long process of learning and discovery and refining. And it’s not a simple, straightforward thing with me. The fact that nobody — but nobody — knows this, shows me I’m doing a good job at blending in.
Question 13: I prefer doing physical activities with friends rather than discussing each others emotional experiences.
Fact: Yes, yes, yes!
Truth: This is an easy one, because it’s so true. I’d much rather co-produce events — concerts, community gatherings, etc — with my friends, than sit around processing emotions. A lot of my friends / acquaintances over the years have accused me of “running from my feelings” because I’d rather be active and doing something productive, than hanging out talking about my emotional experiences. Please. I’m just built differently. That’s all.
Question 14: I am not much of a daydreamer.
Fact: Oh, untrue. I’m a total daydreamer.
Truth: How else am I supposed to stay sane in this illogical, nonsensical world that’s constantly overwhelming me with a full range of idiocy and sensory barrage?!
Question 15: I don’t like people’s constant assumptions that I should understand or guess their needs… it’s as if they want me to read their minds!
Fact: Very true.
Truth: Seriously, people, would it kill you to just tell me what you need? I’m not a mind-reader! I’m more than happy to help and comply, if you simply tell me what you require. I can work it out. But if you play those little “what’s my favorite color” games with me, you’re gonna get a blank stare. Work with me! Help me to help you.
Question 16: I sometimes experience confusing sensations in my body.
Fact: Yep. That.
Truth: Oh . my . god. Truer words have seldom been spoken. In fact, I think it’s safe to say, I often experience confusing sensations in my body. How could I not? I’m so “tuned in” to the world around me, like a radio dial set to EVERYTHING, that the internal sensations I have are not the only thing I’m feeling. There’s Everything Else, clamoring over each other like puppies in a basket, trying to get the most attention. LOOK AT ME! LOOK AT ME! I MATTER! PAY ATTENTION TO ME! That’s what all my sensations would be saying, if they could talk.
In the process of reacting to the outside world — light sensitivity, noise sensitivity, tactile defensiveness, smells, tastes, and all the associations that come up with each one… it’s a vibrantly rich sensory ecosystem I’ve got inside me. And yes, that leads to confusion. Especially when I’m under pressure and the stress is increasing my sensitivities. That’s the most confusing of all.
Question 17: For me sex is more a functional activity than it is an emotional one.
Fact: Yes. It is.
Truth: That’s not to say, it’s not fun. I’ve had some pretty amazing sex, and emotion has played a big part in it. But as I’ve always felt like sex was really for functional purposes — even the emotional aspect seems functional to me. You grow closer when you have sex. You want to be closer to someone, so therefore you have sex. Even emotionally, is serves a purpose. As I’ve gotten older, I’ve gotten a whole lot less interested in sex, I have to admit. It’s a relief, to not feel so compelled to exchange bodily fluids, but simply interact with other people as a person. The purposes that sex serves, I can fulfill in other ways, so meh – sexy… whatever.
Question 18: Some people have told me I am cold or unresponsive to their needs.
Fact: Yep. That’s happened. A lot.
Truth: My partners have always bitched and moaned to me that I’m not as warm and caring as they want me to be. I’ve only had a handful of intimate partners (my current one has been with me for over 25 years), but they all have complained that I wasn’t warm-and-fuzzy enough. Sheesh.
Question 19: I don’t dream frequently, and when I do the dreams usually seem rather boring.
Fact: Oh, untrue. I dream pretty frequently, and the dreams are anything but boring.
Truth: My dreams are usually logistical nightmares — scenes of trying to find my way through a massive medical facility, university campus, or office complex… driving down long, twisting roads through a remote countryside. I’m generally trying to figure out how to get from Point A to Point B, and I have no idea how to do it… but I persevere, and I eventually get where I’m going, even though I have No Idea how I did it. I’m just relying on intuition and instinct in my dreams, and even though I generally achieve my ultimate goal, it’s confusing as hell and incredibly stressful. It’s a relief to wake up, actually.
Question 20: Friends have indicated, in one way or another, that I’m more in my head than in my heart.
Fact: Yes. They have.
Truth: What’s with this “in the heart” business, anyway? That makes no sense. Who would want to make all their decisions based on emotion? That’s not how my world works. At all. Getting from step 1 to step 2 to step 3 is an intellectual process. How can you do anything if you don’t understand the component parts and the steps to getting there? Why would you want to do anything else? People who are “in their heart” more than their head tend to make the kinds of decisions that have landed us in the awful situation we’re in today — prejudice and high emotion running the show. How’s that workin’ out for you, humanity? Not so great, huh… People who base their decisions on anything but fact and logic and what we clearly know about cause-and-effect, should be banned from government, as far as I’m concerned. Then again, the folks in power would probably still find a way to screw everything up, so maybe banning is a bad idea. But there should be a test… at the minimum… for not being batshit impulsive and prone to emotional decision-making.
That’s just what I think.
Note: This is part of a 4-part series about Alexithymia criteria, as well as related thoughts about the “subcondition” in general. You can find additional content at the links below:
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.
Complicated application processes may be intended to “weed out” the people who “don’t want it badly enough”. Then again, they can routinely exclude the very people who want it with every bone in their body, but literally lack the innate ability to actually “make it happen”.
I’ve been giving a lot of thought to autism and artistic invisibility, lately. There’s been a lot of talk online about the book Neurotribes and how … um … ironic it is that a non-autistic individual is being hailed by the mainstream press as an autism expert. I personally really loved Neurotribes. I even bought my own copy. It collected a whole bunch of information that I needed to know, but never found assembled into a cohesive body of work. I particularly appreciated the connections drawn between Kanner and the man whose name is linked with Asperger’s Syndrome. Kanner’s invisible (and apparently unacknowledged) contributors worked directly with Hans Asperger before they fled Vienna, which explains a lot about the “eerie” synchronicities of autism’s diagnostic history. There’s real value in that little tome, and I appreciate the time and effort and care that clearly went into it.
The irony is, of course, that a non-autistic individual is being hailed as an expert on a condition affects the daily lives of thousands upon thousands of full-grown, perfectly articulate individuals who can volunteer their own insider’s views — but are never asked. We’re living the reality of it, sometimes with many decades of in-depth knowledge of the ins-and-outs of the autism spectrum. We have a wealth of autistic experience and can share that experience in great detail — but we don’t get the chance. At the same time that we’re marginalized and dismissed and shouted down (often from within our own community, or by “autism parents”), Steve Silberman is getting a lot of press and being welcomed with open arms into television and radio studios. And the more prominent he becomes, the more it stings for a lot of people.
It’s not his fault that he’s getting the attention, of course. I welcome the presence of people who can speak about us with compassion and respect. It’s not like they’re falling out of the sky, or anything. Plus, this is not a zero-sum game, where there’s only x-amount of fame and fortune to go around. If we play this right, we can totally springboard off each others’ successes and build everyone up, rather that tearing each other down.
But still… I can’t say it’s easy for me to see myself and my community described and documented by a non-autistic person, as sensitive and well-meaning as they are. That’s my own personal “stuff”, and it’s a visceral, decidedly illogical reaction. It feels a little bit like being put on display, like being a member of an Amazonian tribe being studied by a western European anthropologist. My academic background was in cultural anthropology, and one of the reasons I left that field was precisely because of the discomfort I felt at the idea of “objective outsiders” observing complete strangers and assessing what’s going on, based on their own knowledge. And it’s even harder for me, being a member of a “target group”.
Now, I was trained that only an impartial outsider is competent to study a certain population. You can’t study your own kind, I was taught. You have to concentrate on complete strangers. Social scientists who have broken that rule and drawn on their own perspectives, culture, and history, have paid the price in academic circles. Marija Gimbutas, for example — the archaeologist who claimed (and provided evidence) that ancient cultures were not all uniformly brutal manly-man savages hell-bent on destroying each other, but rather had rich cultural heritages in which women played a significant role. She drew conclusions about her digs from her own Lithuanian folk heritage, using her innate understanding of what it all meant to make sense of what she was digging up. As I understand it, Gimbutas was dismissed and marginalized in her lifetime, although her body of work is compelling to this day.
I think autistic invisibility in the arts has a similar situation going, especially when it comes to discussing ourselves in the broader world. Other than authors like Temple Grandin and John Robison, both of whom have experienced tremendous mainstream success and have served to change a lot perceptions about autism, it seems like the mainstream doesn’t really offer much of a place for us. In fact, if anything, the mainstream makes it very, very hard for us to participate in terms of arts and letters.
Watch the video below for one aspect of this.
For visual artists, especially, the process must be brutal and grueling – if not absolutely impossible. I’m glad I don’t have to do it. Then again, I have tried to do it in the past, and I failed miserably. I’ve got a full portfolio of multimedia pieces — some of my canvases are too big to hang in the available space in my house. I’ve tried to submit my artistic works a number of times, but it always got screwed up. I ended up either submitting the wrong piece because the piece I really wanted had to be prepped (framed, documented, presented) in a series of steps that were frankly too much for me to handle.
My art has always played second fiddle to my writing, though. And in that regard, I’ve also failed terribly at the submission and negotiation and interactive process. The steps you have to follow to get seen and heard and published seem specially designed to “weed out” neurodivergent folks who aren’t up for that particular roller coaster ride through hyper-extrapolating, extroverting hell.
Take, for example, the submission process. You have to get your act together and distill the sometimes extensive content of your work into a synopsis that will communicate its essence to a prospective publisher. If you’ve got issues with “big picture” thinking and your primary impulse is to drill down to details, this can be a nightmare. The very thought of doing that has stopped me from submitting my work, many times.
If you do manage to get a synopsis together, you’ve got to get in touch with someone who will publish it or who can represent you to publishers — help you sell it. I’d love to have an agent, but where do you find them? There are books out there which list agents, but how do you pick and choose? Just pull a name out of a hat? Comb through all the acknowledgements of books similar to your own, in search of an agent’s name? One way to connect with an agent is to attend writing conferences, where you can actually meet agents who are specifically looking for new authors. I’ve had numerous opportunities to attend such conferences — at the same time I was writing books. But the prospect of traveling some distance (which may or may not be expensive), wading into a sea of people, dealing with the progression of workshops and social interactions, in a new and unfamiliar place, possibly in an environment that’s too hot or too cold or too drafty or too bright or too open, or all of the above… and then having to collect myself to pitch my idea to an agent?
No thank you. The very thought of it makes me crave solitary confinement in my own softly lit writing cave — silent and removed, with a view of the woods behind my house.
So, there’s that. Of course, there are other ways to get seen and heard. Open mics, for one, where strangers gather to share their writing, their music, their spoken word performance. If there are two words to make me shudder, they’re “open mic”. The idea of traveling some distance — 30-90 minutes — usually at the end of a long day when I’m out of energy, to gather with tens of total strangers, some of whom may reek of cigarette smoke, in a loud, crowded cafe or pub or bar, where there may be alcohol served (I don’t drink and can’t stand being around people who are drunk — no offense), signing up on a haphazard schedule sheet, without any idea when exactly I’ll be called up to perform … always with the chance that my unpredictable selective mutism will kick in just as I’m taking the stage… possibly have to chat and otherwise interact with people who want to discuss my work with me, and then head home at the end of the evening in a state of complete, near-catatonic exhaustion… Yeah, no thanks.
Frankly, it’s not worth the meltdown. I might come away with an agent contact, but knowing myself as I do, I’ll be completely wiped out for days, even weeks, after that. And then the rest of my life will suffer.
I’m not in a position to just take a week off work to recuperate. I need my job. I need the work. Because it’s what pays the bills — not my writing.
The same goes for my feelings about book readings and other public appearances. If I were to be published by a mainstream press, I sincerely doubt I’d be able to support the book with appearances — live or on broadcast media, signings, readings, all that. My system just doesn’t work in a way that lets me do all that AND write. Or even think. The amount of publicity it takes to get people to even notice your work exists, is insane… let alone compelling enough people to buy it to make it worth your publisher’s time, energy, and money to put out your work again again in the future. Much of that work is on the author, too. And I don’t think I could really commit to the rigorous schedule needed to Make It All Happen.
And people wonder why I’m not more widely known. There you go.
To be honest, I’m not sure it bothers me all that much. I have this blog, where I can write what I want, when I want. I publish my own works (under various pseudonyms that align with the different topics I cover). The books I create are every bit as polished and professional as a mainstream publisher’s work. And the tweaks I’ve made to the page format actually makes mine easier to read. Most important of all, I’m writing. On my own terms. In my own way. And if I’m invisible to the rest of the world, it’s their loss, not mine.
Am I some kind of egomaniac who fancies herself the best literary thing since bound books? Hardly. I just know that I have a lot to offer, by way of an insider’s perspective on autism — and other aspects of life — and my voice is unique. And strong. I have ideas that I don’t hear anyone else talking about, and even if others are talking about these things, I say them differently than others. Plenty of other autistic writers even better — strong, unique, with an engaging style that really brings you into their world in a meaningful way. And the rest of the world doesn’t know about them. It doesn’t know about us. As a result, it trundles on in a foggy state of misinformed malaise that wastes their precious time on fearing and trying to fix us, rather than understanding us and what we bring to the world.
Autistic individuals — artists and writers included — have so much to offer. We can broaden and deepen and humanize the world. But the mainstream has no patience for us, won’t make accommodations for us, and would rather relate to individuals who are more familiar / less scary than us. So, you have all sorts of non-autistic people saying all sorts of things about us — much of it harmful, some of it good — without any input from us at all.
And the cycle of autism-phobia continues. Along with fight-flight-frenzied funding initiatives designed to erase the “problems” that we cause (and which we are) from the world.
The way I see it, the success of Neurotribes can serve as an important wake-up call for both our community and the mainstream arts and publishing world(s). Culture doesn’t create itself, and it doesn’t emerge in a vacuum. It needs to be supported and sustained, and it needs to be championed — both from within and without. We need to support our own. AND we need the mainstream to realize just how much value there is in our work, as well as how many of us will actually buy the books and art that’s created by #ActuallyAutistic individuals.
We need to go beyond being a curiosity — Rainmen who know what color a day of the week is or who can design industrial equipment that magically calms cattle marching to slaughter. We need to become more to the world than problem children and awkward adults and circus sideshows. We need to be seen in all our diversity, all our mastery, all our gifts. And people need to get a f*cking clue about how hard it is for us to tolerate the conditions they create, which they think are fine, but are huge hurdles for people like us to negotiate.
The world of arts and letters can play a big role in that. So far, they haven’t bothered, that I can see. If they could simply get their pre-conditioned formulaic minds around the opportunity (especially financial) that’s associated with actively promoting the works of autistic writers and artists, it might change a thing or two. But I haven’t the faintest idea how that can happen.
The good news is, we can actually do a lot of this ourselves. I’ll write more on that later. That’s enough soapbox action for now.
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.