Accommodating my #autistic self

aurora borealis over ocean with the lights of a town in the distance
Aurora borealis over the ocean with the lights of a town in the distance – We didn’t see this last night, but we tried…

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.

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Bypassing the rings of #autistic hell

 

hermann herzog painting of man in boat on a lake

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.

This passage in Odd Girl Out really spoke to me:

… 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.

iceland 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.

I’ll be here when they get back.

They know where to find me.

A “Sample Sensory Diet” of Common Sense

a picture of a number of cherry picker lifts in a storage yard

Some years ago, I found this:

A Sample Sensory Diet

The following guidelines represent a kind of sensory diet for one particular child. Keep in mind that every child has a different regulatory and sensory profile, and that these activities are not appropriate or useful for every child. You should get guidance from an occupational therapist or other individual who is experienced with sensory integration.

In this particular example, the child would become disorganized on a regular basis. Although this has meant different things at different times, this child shows disorganization primarily by:

  • being extremely silly and unresponsive
  • laughing uncontrollably
  • losing control of his body–getting extremely limp and/or clumsy
  • becoming either hyper- or hypo-sensitive to pain and other physical stimuli
  • getting aggressive–pinching or spitting, usually in a taunting, almost maniacal way
  • humming and clicking while wandering around aimlessly

Engaging this child in sensory activities on a frequent, regular basis seemed to help him to remain engaged, focused, and in control more often. When this child does get disorganized, these activities help him to find himself again.

Great resources for sensory integration information:

Kranowitz, Carol Stock. The Out-of-Sync Child: Recognizing and Coping with Sensory Integration Dysfunction. 1998. New York: The Berkley Publishing Group.

Ayres, A. Jean, PhD. Sensory Integration and the Child. Western Psychological Services: Los Angeles, 1979.


At the critical times during the day, plan on activating the child with these activities.

NOTE: Spin the child at every activation phase. Spin him in the swing 10 complete revolutions each direction, with a 20-30 second pause in between. Spin firmly and quickly. Do not repeat.

Warning: For some children, spinning is not useful, and can be overstimulating and dangerous. Before engaging in any of these activities (and spinning in particular), please consult a professional who has a solid understanding of sensory integration principles.

Chase Games

  • Tag
  • Follow-the-Leader
  • Obstacle Courses
  • Red Light/Green Light
  • Running Races

Exercise Games

  • Simon Says
  • Obstacle Course
  • “If You’re Happy & You Know It”

Incorporate:

Jumping Jacks
Stretching
Situps and Pullups
Tumbling/Head Stands
Balance Beam
Standing on one leg
Wheelbarrow

Swinging/Bouncing

  • Inside swings
  • Trampoline
  • Hang-bar
  • Tire Swing
  • Outside swings
  • Outside trolley
  • Exercise ball

Squeezables

  • Nerf balls
  • Gak, floam, flubber, silly putty
  • Play catch with any ball

Incorporate those activities plus others listed in the box below into as many of your games as possible. Be sure to work in a sensory activity at least every half hour.

EVERY HALF HOUR AND ANYTIME

Other Sensory Stimulation

Everything on the other list plus:

  • Smelling Scents Game
  • Rubbing/Brushing (brush firmly and consistently–avoid stomach)
  • Rolling Up In Blanket
  • Crawling through a “caterpillar” (long tube of stretchy fabric)
  • Dragging/Sliding Around Room
  • Silly Walks (e.g., crab walk)
  • Ball and Bat
  • Imitating Songs
  • Hand Games
  • Stilts/Roller Skates
  • Jump Rope

CALMING ACTIVITIES

8:30AM Bath, Brushing, Deep Pressure

3:15PM Child’s choice (e.g., biking)

6:30PM Supper, Bath, Deep Pressure, Free Play, Stories, Bed

Now, a bunch of things come to mind, when I read this.

The first is, Why is this considered a “sensory diet” that needs to be specifically detailed to parents? I thought that’s just how kids were/are supposed to occupy themselves when they’re kids!

I mean, seriously – why is this a plan of action that is called out as something special, something artificial? Why is this something that is seen as out of the ordinary? When I was a kid, this is just what we did — we played plenty of “Chase Games” like tag, follow-the-leader, obstacle courses, red light/green light, and running races. And we played plenty of “Exercise Games” like Simon Says, creating and running through obstacle courses, and singing “If You’re Happy & You Know It”. And we didn’t need a trained expert to “instruct” us how to do it.

Am I the only one who thinks that this “professionalized” approach is a bit silly? For people who are too busy to tend to their children and are eager to plop them down in front of the television or the DVD player or the computer, it might be necessary to detail exactly why kids need to play games like this, but it’s a sad, sad commentary on modern American life, when parents and adults need to be explicitly told to create conditions in which their kids can play tag, follow-the-leader, and red light/green light.

I really think there’s something in kids that instinctively knows what they/we need, in order to mature and grow up strong. When I was a kid, we instinctively did jumping jacks, stretching, situps and pullups, tumbling/head stands, balance beam, standing on one leg, and wheelbarrow. We didn’t need “guidance from an occupational therapist or other individual who is experienced with sensory integration.” We just did it. We ran around and played. We raced each other and tested our physical limits and worked our tumbling and balancing into the course of our play. We skipped rope. We climbed, we jumped, we did all sorts of things that kids apparently don’t do anymore, unless they’re specifically ordered to do so by trained professionals or parents who have been coached by experts.

How did we get to this place? How did the domain of child’s play become the exclusive domain of qualified and certified professionals? I have no doubt that the work authors who describe in detail (for overwhelmed adult minds) the tangible benefits of kids just being kids has made a contribution to the developmental health and well-being of lots of challenged kids. But what the hell is up with parents, that they need to be explicitly told that their kids need to play at, physically and socially, in order to develop properly?

WTF?

The next thing that comes to mind is, Holy smokes, the top part really describes me to a “t” when I was a kid. I wonder if my parents knew/noticed any of this stuff.

It’s really interesting to think back about how I was when I was growing up — really hyper and hard to control, and sensitive on top of it. And when I look at the list of issues kids can have:

  • being extremely silly and unresponsive – CHECK
  • laughing uncontrollably – CHECK
  • losing control of his/her body–getting extremely limp and/or clumsy – CHECK
  • becoming either hyper- or hypo-sensitive to pain and other physical stimuli – CHECK
  • getting aggressive–pinching or spitting, usually in a taunting, almost maniacal way – CHECK
  • humming and clicking while wandering around aimlessly – ??? could very well be

All of this stuff just fits me so well, except for maybe the last one, which I don’t really recall. Not that it would have been unlike me. I was an “unusual” child, to say the least, and I probably would have considered wandering around aimlessly while humming to myself to be quite a useful and productive use of time – no joke.

When I look at the list of Sensory Processing Disorder symptoms over at http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html, I’m really struck by how well a lot of them fit me, and how well they fit my mother. Whoah. This puts Mom’s behavior in a whole new light.

The problem when I was growing up was that she was on the opposite end of the spectrum than I — she was hypo-sensitive and sensation-seeking (like the proverbial bull in a china shop, always loud and high-contact and rough and not very good at figuring out physical boundaries, etc., etc.), while I on the other hand was hyper-sensitive and I had really bad reactions to touch and being pushed and pulled and treated like some rag doll.

It’s so wild to think about this, now — it really puts things in perspective. And it makes me a lot less angry with her.

It puts my whole family into perspective, in fact. My siblings had issues. I had issues. We all had issues.

And my parents made sure we grew up in an environment where we had a “rich sensory diet”. But I’m not sure they were consciously aware of all this. I don’t think my mother really understood the nature and the impact of her behavior — she still doesn’t, from what I can tell. My dad did things, too, that tied in with “sensory richness”, like building a hanging bar for us kids to play on, and always encouraging (and pushing) me to test my physical balance limits, like with my skateboard.

Mom and Dad did appear to do things instinctively to address my issues, such as spinning me around and making sure I was always physically active and encouraging me to do lots of things that developed my balance and coordination. I was a dorky kid, with a lot of problems balancing, and I have distinct memories of my parents — especially my mother — going to great lengths to get me to participate in activities that would help me develop those. But I’m not sure they consciously chose or planned to do these things. It wasn’t like they had a formula for making sure we kids developed adequate proprioceptive and vestibular viability. It wasn’t like they consulted with experts about how best to address my sensory processing dysfunction.

At least, I don’t think so. It could be that they did talk to child psychologists and what-not, and they just hid their methods from me (which wasn’t hard to do, when I was an innocent and all-but-clueless kid). Mom did have a copy of “Dr. Spock” around, and she consulted it a lot, but so much of what my parents did, other parents in our area did for their kids, as well. It was just how things were done in the world I grew up in.

This part of my post dovetails nicely with the first part — that is, what is up with parents today, and why do they need to have these things explicitly told to them?

This really, really puzzles me. Is it because there has been so much emphasis put on “professionalization” in the past 50 years (since the USA rose to a position of global domination and the parallel veritable explosion of higher education and proliferation of specialists), that we as a society are invested in our experts? Is it because we as a society have put so many of our eggs in the basket of developing “professional expertise” that we’re now obligated to dip into the pool of professional knowledge, in order to do anything, anymore? Have we become so enamored of our “advancement” that we’ve made it all but impossible to live our lives? I smell the scent of another extended blog post, for another time… but the burning question with regard to this issue within the context of this post, is, are parents so dependent on professionals for guidance, that they are afraid to just parent? And are they so distanced from the varieties of life (sitting in their homogenized cubicles in their standards-driven office environments), that they fear even the slightest deviation from “normality”, as it’s defined by the qualified professionals of the day?

Seriously, when I look at the organizations dedicated to stamping out the “autism epidemic,” I’m struck by the corporate backgrounds of these individuals. How many of the folks sitting on the boards and doing the research have actually experienced what it’s like to be outside the acceptable range of “normal” behavior and human experience? Where’s the diversity? I wonder. The unfamiliar makes people afraid. Fear makes people do rash things. Fear makes people start and/or send money to organizations and initiatives that promise to relieve their fear.

I think one of the big reasons that my own parents could create situations where I was active and had the chance to develop coordination and balance, was that they themselves have sensory processing issues, themselves and they grew up in an environment where sensory issues and autistic spectrum behaviors and tendencies were/are actually a “regular” part of life.

Anybody who says that autism is a “new” epidemic has never spent time with my family, my extended network of relatives, and the insular communities of faith in the neck of the woods where I grew up. Most, if not all, of my relatives (including third cousins twice removed, whom I actually did grow up around), as well as most of my friends and acquaintances and people I went to church with, could easily be placed somewhere on the Autistic Spectrum. Where I grew up, all you have to do is go buy a quart of milk at the local convenience store, to bump into people who — in private or unguarded moments — exhibit plenty of signs of “autistic spectrum-ish” behavior. I’m serious about this. We’re built differently, where I grew up. If you head into that neck o’ the woods (and I do mean woods), I can all but guarantee any aspiring student of the autistic spectrum will find a plethora of examples of folks all along the autistic spectrum and/or with significant sensory processing issues, who are “recovered” or at least sufficiently rehabilitated to function fully as mature adults in the big, bad world. (I won’t say where that neck of the woods is, for the sake of privacy and retaining the human dignity of possible targets of “autistic diagnosis”.)

Does this mean that the land where I grew up is chock full of behaviorally challenged individuals who need special intervention, just to get along in the world? Hell no. It just means that this so-called “autistic epidemic” might, to some extent, be a fabrication of people who have become so distanced from the flow of natural, organic life, that

A) they don’t realize that their kids actually need to run around and play, in order to grow up capable and strong and well-adjusted to the social and the physical world,

B) they can’t make a move without consulting with a trained professional expert, and

C) that the phenomenon we call “autism” may, in some cases, actually be an extreme and underdeveloped expression of what may be perfectly normal part of life — a part of life that certain folks know how to integrate into their daily lives, over the course of their constantly evolving life experience.

Now, I can sense that I’m drifting off-track with this post. And I may be courting a great deal of controversy (even wrath from the “autism epidemic” proponents). I’m finding more tangents, and my associational mind is going wild, here, and I’m sure I’m not being very diplomatic, so I’ll get myself back on track and speak to these issues more, later on. For now, let’s return to the “Sensory Diet” web page.

Under the Activities, I find even more “regular and normal” parts of my childhood experience:

Swinging/Bouncing

  • Inside swings — we had a front porch swing that we kids often sat and swung on. It wasn’t “therapy”, it was fun, and it was what we did on summer nights.
  • Trampoline — our town had one at town hall for us kids to jump on during summer vacation. I think they may have removed it, due to safety concerns, but it was one of the best parts of summer, to head over to town hall and jump on the trampoline, while the Bee Gees were playing on the radio.
  • Hang-bar — my dad installed one in our back yard, and we played on it constantly. It was just something that we had. I don’t think a doctor or expert told him to put one in. It was just seen as something that was an essential part of growing up.
  • Tire Swing — my grandparents had one of these, and when all the cousins would gather, we would all just achingly pine for our chance to get on that swing. It was one of my favorite parts of visiting my grandparents, and it was a really vital element in me keeping my cool, during visits. My grandparents’ house out in the country was full of strange and strong smells that my city nose didn’t recognize. It was easy for me to get sensorily overwhelmed, so I spent a lot of time on the tire swing.
  • Outside swings — see above. Also, I and my siblings and my best friends, loved to swing on the playground swingsets, long past the time when we were supposed to “grow out of them”. We’d head over to the park and sit in the swings and twirl and spin and do all sorts of things that “normal” people would probably consider aberrant. But we were by ourselves, and we didn’t get crap from anyone, because no one was watching us. And if they had been, we would have told them to “shove off!” anyway.
  • Outside trolley — ?? what’s this?
  • Exercise ball — This is a newfangled thing, so I can’t speak to its place in my childhood development.

Squeezables like nerf balls and silly putty were a really important part of my childhood experience. No trip to the pool was complete without a nerf ball to throw, flinging water in all directions. And nerf footballs were the only acceptable kinds of footballs to have. I remember many a game of football, with all us kids squishing and pressing and worrying the nerf football, till it started to literally fall apart in our hands. We loved our nerf footballs to death, picking absentmindedly at the surface, squeezing and pressing and throwing and catching.

We really played catch with any ball we could find. Soft squishy balls, hard softballs, tennis balls, baseballs… Run-down was a particular favorite, as we could play it in limited space and race back and forth between the bases, coordinating our motions and actions.

And we didn’t need to have trained experts show us how to do it, or tell our parents to allow us to do all this.

We just did it ourselves. Our parents expected it. And they created space and opportunity for us to do it.

This wasn’t all considered a “special sensory diet” — it was just the process of growing up. It was The Way Things Were Done.

This being said, the last thing that comes to mind is, What is up with this web page, with the “scheduling” of these kinds of sensory diet activities? How contrived — and artificial — is that?

I mean, come on, people — You have seriously got to be kidding me, that you’d actually “work in a sensory activity at least every half hour” as though it’s some part of an official agenda. What’s wrong with just spontaneously allowing these things to happen? What’s wrong with just creating an environment where kids are allowed to do all this on their own, at their own pace, in their own ways? I firmly believe, from my own experience — and my own fully functional nature — that even the most impaired kids (if given half a chance) have the innate capacity to identify the activities and the pastimes that will strengthen their weak points.

They/we just have to be allowed to do so. Without being ridiculed. Without being pitied. Without being considered “abnormal” or “defective”. Without being bullied and tortured and treated like freaks.

Maybe I’m being overly negative-Aspie and insensitive to the needs of SPD/Autistic kids, but to me that having adults organize and participate in these sorts of activities with special needs kids seems a little dumb. Adults just don’t have the imaginative range or the endurance or the flexibility (in terms of time and attention) that kids have, and they’re (in my opinion) much too “temporally bound” — as in, too aware of time schedules and deadlines — to give kids the quality of attention and activity that they need.

Why not just turn off the television and unplug the DVD player and computer, and get the kids to play? Why not just “chase ’em outside” like my mom used to do all the time, and create places where they can indulge their every SPD-rehabilitory activity to their hearts’ content? Why not just gather a bunch of kids together and teach them to tolerate differences and recognize each others’ strengths? Teach them to let the kid who can’t hit the ball to save his life keep score and organize the league. Teach them to be patient and not tease and taunt just because one of the kids picks his nose or flaps his arms when he’s agitated.

Why not just let kids be kids — and teach them to let other kids be… other? Without sanction. Without punishment. Without shame and ridicule. That seems to be a more fitting solution, than contriving all these carefully scripted and scheduled and choreographed and adult-driven activities that are poor imitations of the “real thing.” And it might just train the emerging generation of NT folks to tolerate diversity and not be mean-spirited bastards to those of us whose worst, most heinous crime is making others nervous.

How about just not treating developing kids like we’re abnormal… simply because they’re still developing?

We are all works in progress, and the sooner we stop pathologizing diversity and learn to let each other just be (and give us ugly ducklings the time and the chance to become the swans we truly are), the better off the whole planet will be.

That’s just my opinion, but I don’t think I’m wrong.

Alexithymia? Let’s take another look at the facts AND the truth – Part 4

alexithymia score : 156 points

This continues my earlier investigations into Alexithymia – See also Part 1, Part 2  and Part 3

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. Feels are 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.

Fact: Yes.

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.

Fact: Yep.

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.

Fact: Yes.

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.

Fact: Not. Well, kind of.

Truth: I have a wild imagination. I dunno why this is on the list. If Alexithymia is actually the product of hyper-active emotional experiencing, as I believe it is, rather than limitations in understanding, then one would expect one’s imagination to absolutely, positively run wild. Except for those circumstances where stuff needs to get done — and in that case, extreme management and proper channeling of thought energy is called for — which is where the “employed in a more controlled fashion” comes in, I would imagine.

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:

 

What if #autistic Alexithymia isn’t anything like what we think it is?

You keep using that word. I do not think itmeans what you think it means.
You keep using that word. I do not think it means what you think it means.

Something occurred to me today.

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.

  • Sad
  • Happy
  • Angry
  • Jealous
  • Bored
  • Whatever else

What if the emotional vocabulary is failing us, rather than us failing it?

Alexithymia? Let’s take another look at the facts AND the truth – Part 2

alexithymia score : 156 points

Herewith continues my discussion of Alexithymia. Part 1 is here.

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:

 

This is how these things should be arranged.

black and white salt and pepper shakers arranged in alternating order on top of a stove console
It’s Friday. I don’t have a lot of time to fritter away on illogical groupings of stuff in my kitchen. That includes the salt and pepper shakers that sit atop the console of my stove. There are two pepper shakers, and one salt shaker. The other salt shaker is upstairs in the bathroom, where I use it to make my warm (sometimes hot) saltwater wash to tame the sore throats I get at times. To the right of the shakers, there’s a salt cellar which is more ornamental than anything else. I like the color. I like the sheen. To the left of the shakers is the knob of a frying pan lid that I (still) need to re-attach. The pan itself is about 30 years old, and the knob only came off a few months ago, which is a pretty good record. Once upon a time, they made things to last.

Of course, I haven’t had the wherewithal to find the time to re-attach the knob. That takes planning. It also means I have to leave the lid in an out-of-the-way place where the glue can dry. For 24 hours. Augh! The idea of going without my favorite frying pan for 24 hours (possibly longer) fills me with anxiety. I have other pans to cook with… but what if I need that pan, because the others I have don’t do the trick well enough?

What then?

Hence the delay with the pan repair. Hence the visually pleasing (to me, anyway) balance of the objects atop my stove console. I have to say, it is a nice way to wake up in the morning, with all those items neatly arranged. It calms me. It soothes me. Having straight objects at a right angle to other things chills me out visually. There’s something decidedly necessary about straight lines for me. I talk about that in my memoir Into the Deep, which I’m publishing with Auptima Press. I also talk about my love-hate relationship with water. I talk about balance — and the lack thereof. I talk about what it’s like to go through a sensory day. An autistic sensory day.

What move should I make next?
What move should I make next?

Usually, I just take it for granted that I have all these experiences – the balance issues, the proprioception issues, the sick feeling in the pit of my stomach, tip-toeing across my kitchen, doing things in precisely the same sequence every single day, and all the other ad hoc compensatory things I do, just to keep myself going. But when I write about it and really dig into the details of the experience… it’s pretty amazing, all the tricks I have for keeping myself going. It’s not much fun, most days, but over the years, that’s become just background noise for me.

See, I have an alternative universe where I can absolutely, positively enjoy myself. It’s not an alternative universe, in the sense of it being a fantasy world I make up for myself. Rather, it’s a particular focus I have on very different aspects of the world around me, that sharply diverges from the ideals of allistic / non-autistic folks. It’s a world of ideas, of detecting and analyzing patterns, of creating new things completely from scratch, of getting things done… and having a full range of chosen sensory experiences that cradle me in an envelope of sensory focus that is so pleasant and focusing that none of the “difficult” stuff intrudes. Stimming. Rocking. Clenching a wadded up tissue in my left hand. Running my fingers over the smooth and rough edges of coins in my pocket. Reading and writing for hours at a time. Diving into sequences of numbers like the glorious pool of water they are.

When I’m allowed to follow my own path and create a world around me that actually works for me, all my autistic issues — which the medical industry is bound and determined to eradicate with the help of institutions like MIT and UC Davis (with their ABA and A$ connections) — fade into the background. They don’t go away, but they’re not primary in my life.

Background noise. That’s all it is. It’s not pleasant, and it’s not my first choice, but I can eclipse it all … with my own chosen ways.

I wonder sometimes what it would be like to get through a day without being vexed by neurotypical expectations. I wounder what it would be like to not have to deal with a terrible work environment (that allistic others think is just fine) filled with scents and smells and lights and sights and vibrations and sounds that continuously intrude and interrupt my train of thought.  I wonder what it would be like to not have to drive to work in the midst of aggressive, distracted people who think the rules of the road are simply general suggestions. I wonder what it would be like to get enough sleep – to be able to actually sleep when I am tired, rather than when I’ve discharged the last of my duties and am “released from my obligations”. I wonder what it would be like to live in a world that’s about me, not about me fitting myself into the dominant requirements simply because, well, that’s how we do things around here.

Then I start to feel terrible, so I stop thinking about it. I have to function in the world. It’s non-negotiable. I can’t rely on my autism as a way to do away with the unkind world around me. It’s never going to accommodate me. It’s not even going to try. It’s going to keep going in its own way, and it’s going to continue to raise one eyebrow at me, when I protest about something that’s particularly noxious to me, but which none of my non-autistic peers things twice about. The cluelessly unkind world is where I have to work and live and function. Unless and until I can actually support myself as myself at a level well above poverty, I’m not ditching this situation. I have no wish to end up in a state institution in my later years. I have enough trouble articulating my needs in my “high performing” state… let alone how I’ll be when I’m old and feeble and A) nobody’s paying any attention to me, ’cause I’m old, and B) I can’t piece together thoughts properly to make myself understood.

I just can’t go there. I also don’t have to. At least not yet. I can keep functioning moderately well in this world. No matter how much it hurts, no matter how sick I feel, no matter how crushed I am, day in and day out, I can keep on . I know how to suck it up. I know how to buckle down and just deal with it. I was trained, as a kid, to do that. No matter how much it hurt, no matter how awkward and alienating and self-withering life was, I was trained to get on with it. Put my own feelings and sensations aside, focus on the end goal — eyes on the prize — and keep going. I found my joys and bliss along the way, in my own particular fashion. I found who I was, regardless of what the rest of the world thought. And I learned to disregard people who were clearly at a loss about what made me how I am or who I am… more background noise. Those skill have made it possible for me to persist. To endure. To develop and strengthen. To thrive, even.

As challenging as my daily life is, as painful and frustrating and depleting as it is, it still pays the bills. It makes a decent quality of life possible for myself and my partner, and it allows us to do things like keep a roof over our heads, keep the utility bills paid, clothe ourselves, accommodate our individual interests, and actually go on vacation, now and then. Because I put up with the never-ending bullshit, I can regularly eat healthy food that I cook on my own stove in my own house on my own terms. To keep my strength up to deal with the interminable onslaught of ridiculousness and mean-spirited stupidity that seems the rule rather than the exception, these days.

There’s a price for it all. There’s a price for everything.

And as long as I have the pieces of my life in place that bring me comfort — something as simple as a few salt and pepper shakers lined up neatly on my stove console — I’m good.

It’s not perfect, it’s not ideal, but it’ll do.

Sharing: When your #autistic sensory issues shut down your communication | from Auptima Press

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.

Read the rest of the article: When your #autistic sensory issues shut down your communication | Auptima Press

Sharing: Sensory Issues – Hyper and Hypo-Sensitivity are Real Issues for #Autistic folks | from Auptima Press

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?

Read the full article: Sensory Issues – Hyper and Hypo-Sensitivity are Real Issues for #Autistic folks | Auptima Press

What it means to be #autistic and permeable

water pouring on a permeable surface and tricking through the porous material
Everybody else’s “stuff” is always soaking through.

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.

So they don’t work against you.