Surviving- When autism spectrum gets complicated…
Putting stuff like this into words has been very challenging, but I think I am coming close to more easily talking about who I am now. I’ve been watching other people write lots of things about religion and politics and mental illnesses and awareness stuff. Have you ever wondered how we arrive at our conclusions? How we come to decide and define what is right and wrong? How we come to believe what we believe?
We (I and all the people who know me in real life) have been dealing with me having what’s basically called an emotional switch that gets flipped when I get PTSD triggers. I’m still discovering exactly what these triggers are. I became aware during high school that I go in and out of personality modes that handle different kinds of situations, but mostly I stayed in what I call shut down mode, a flat personality that doesn’t get emotionally involved.
As I’ve progressed through adulthood, I’ve learned to develop more personality modes so I can better control who I am and how I present, although I didn’t realize at those times that’s what I was doing. These were most easily seen on the internet as I went through my Yablo, Janika, and Bluejacky stages, which are the most visible.
Pinky is turning out to be an interface for all the modes, much like an office coordinator. As Pinky is going through all the files in the other modes, my psychologist and I are discovering that I have PTSD triggers and different ways of handling them, like adjustment disorders, delayed emotional response, PTSD Tourette’s (sort of like an aspie super stim that I can’t stop, especially when I’m driving so it gets a little scary and sometimes I have to pull off the road), pain disorder with psychological factors (and that on top of documented nerve damage), and yes, a little bit of narcissism, which actually isn’t a joke since it has loads to do with how I survived years of emotional and physical abuse. For example, turning ‘what’s wrong with me’ self harm and suicidal thoughts outward to ‘everyone around me is so stupid’ is what saved me from the kind of self destruction that a lot of people don’t understand. Fortunately, I managed to veer away from what people think I’m joking about when I call it being an evil villain fully intent on revenge.
I started openly bringing all this up on Pinky blog last year, and then started specifically defining it in hybrid- how robots go on (more links there). Later I openly shared the diagnosis documented as part of my disability.
I’m NOT talking about dissociative identity disorder. Despite have some mixed up recall during the roughest PTSD triggering memories, I don’t have a dominant personality that takes over and lose actual time, although I do go through time orientation loss jags from stress, which isn’t the same thing because I’m able to reconstruct. When I talk about shut down, it’s an autism spectrum emotional shut down that allows me to keep interacting on a very low level automatic function so that I can make it home with groceries kind of thing. Shut down helps control meltdown, which is emotions going out of control, another thing autism is famously associated with. Developing personality presentations has helped me step into a sort of acting role as needed so I would be able to handle jobs and stuff, although sometimes this has backfired in unforeseen and sometimes hilarious ways. Pretending to be a Vulcan at all times doesn’t actually help a person work well with others on a job…
So I’m essentially a real life role player. I learned at a very young age to be a ‘doll’, to ‘perform’ or be punished, sometimes severely. It took a few years, but I learned to staunchly control my natural autism spectrum inclinations, not by understanding either them or anything else going on around me, but by strongly stuffing down any and all feelings I might be having and turning into a stone. I survived.
The reason this is important to understand is because a lot of people don’t survive. There are too many people who are on the edge of self harm and suicide every day who aren’t getting the help they need and who haven’t figured out how to survive like I did. They don’t feel safe with themselves. They are like ticking time bombs walking on eggshells and hiding all their stuff from people who don’t understand and fail to comprehend. I call this the yawning chasm, the lack of real connectivity with others. We might be interacting with others all day long in one form or another but never find that connection that helps us feel stable, or validates our difficulty. We feel emotionally abandoned and ignored.
I had two modes I clicked into throughout childhood, and they both had names. I wasn’t particularly aware I was doing it, but I knew the names. I never told anyone those names until I became Pinky and finally brought it up. If I was talking to anyone, it was usually in mode, because deep down I actually prefer not to talk at all, even though I love brain sharing in print. I know, that’s funny, because I actually don’t shut up once I start talking. It helps to understand that I never saw my mom as a mother figure and never dwelled on how that made me feel. Yes, very seriously shut down emotionally.
I had a secret friend name in high school, essentially creating another me that talked to me. I never really shared that beyond very briefly bringing it up a couple of times in my life. That split helped me keep my balance in a world that was crumbling all around me after we moved to another state and things got really stupid between my parents. When I talked about this part with my psychologist, he became very interested in how I could change reality in my mind and believe it, a sort of consciousness of reality toy I played with without realizing it (which later grew into a love of philosophies). That link goes to a list of links. Essentially, because I couldn’t look at faces at all one year and was so disconnected from other people, I reworked reality to be more like an alien world and I was the visiting alien. The halls were sloped like a stream could run down the middle, so I had to stick to the sides by the walls so I wouldn’t slide in, all the glass was pink and everything I saw through them was pink because of that, my line of sight was knee level and I got to know people by their knees, and talking sounded like gibberish. I carried this out for a couple of months until I realized I was kind of stuck in it and it had become tiresome, so I snapped back to ‘real’ and started looking at faces again. When I did that, I also snapped into a personality mode and got kind of mean and secretly destructive, pretending I was a spy and committing sabotage that backfired on other people. I never got caught, but looking back, some of the fallout wasn’t cool. Very real consequences were inacted on wrongly accused innocents, although I thought it was funny back then because I intensely disliked them.
I didn’t think very much about that stuff in my 20s, which got pretty chaotic from the poor choices I kept making, but by my 30s I was back into mode switching so I could handle being married and raising kids. From there on out people have known me as Janika and Yablo. Bluejacky came a little later, and Pinky is the last. There may be a couple more very minor nearly inconsequential modes tucked here and there.
Janika is like a baseline, an umbrella over the old modes, a central hub of sorts, and eventually an epic fail. Janika history is volatile and never had a direction goaled out. Janika was stuck with Yablo’s mess and Bluejacky’s anger and didn’t see a way beyond any of it, so Janika disappeared.
Pinky is an Idea. Pinky thought long and hard about goals and plans and modus operandi. Pinky wrote out a mission statement. Pinky incorporated all the modes into one whole and is mapping how they all became part of a survival story. Pinky sees the bigger picture and brings all the things into focus. Pinky named Aspienado and created a direction for all the modes to go in together. Pinky is sharing real life stuff, what’s really inside this kind of head, because it’s important for other people to see that 1- kids like me can turn out ok, 2- honesty is what saves us, and 3- kindness is logical.
There are others out there arguing semantics about whether or not it’s acceptable to say someone has autism (which sounds more disease-y) vs someone is autistic (which sounds more label-y), among many other things. I don’t take sides because I don’t care. I have it, I am it, I am living and breathing it, and I know that the bickering is borne of being who we are- super definers of all the reality around us. We are the brains that want specific answers to vague questions, that want words to be used correctly while we simultaneously don’t understand how the way we use our own words mixes people up, the brains that thrill to find and point out flaws and figure out people puzzles and solve problems all around us by thinking of better ways to do things while we gunk up our own days getting too caught up in these things. We are glorious spatters of thought that either reclusively don’t share or just never shut up.
Everything in this universe is a spectrum. We are all waking up to that, some more slowly than others, but eventually the entire world will learn to stop rigidly defining and start allowing variance. Where in the world humans got the idea that things have to be rigidly defined is probably a Hitler thing, or the Ancient Aliens telling us what to do and how to do it. Who we have to be laid over who we are born to be is the modern conundrum in philosophy. Who is to say what true freedom is if we keep fighting over every little thing we are supposed to do and think? We are free to fight, wheee…
Someone shared a thing on facebook last week about how if we had big old fashioned porches around our houses like in the olden days, our world would be a friendlier place, or something to that affect. Please allow me to point out the flaws in this thought-
- Being stuck in low tech nearly nonmobile society in a hot environment with no air conditioning was why those big porches were a thing.
- The cost of building houses with big wraparound porches nowadays generally precludes wasting materials on ‘dead space’ unless a person has the money to blow on it.
- The views pretty much suck unless you’re lucky enough to live near a nice vista, a water front, or a cool skyline.
- The TV is inside and the neighbors are irksome.
- Sweet memories of big porches might be a little skewed…
- Those kinds of old houses are nowadays becoming synonymous with drug dealing and weapons caching, at least in popular entertainment.
Need I go on.
It’s about perspective. What one person thinks cannot apply to all brains at any given time. It’s only been in the last 10 years that brain variance is becoming recognized as ‘ok’. I’d love to posit that ‘neurotypical’ is a widely overused and misconstrued word, and that we’ve got this weird neurotypical until proven otherwise thing turning mental hypochondria accusations into a circus. Yes, there is abuse of entitlement, but people actually do need help, and the ones needing it the most are having to fight through a barrage of hate trying to get it, which seems a bit odd since the hate is springing from standing up for – ok, that’s dumb and I can’t even go there saying it. I watched the same fight over ADHD, it was like a witch hunt, OCD people are rising up now (about time), and basically everyone with even a hint of probably need for diagnosis is finally standing up for themselves. YAY, *finally*. If we’re going to complain about NTs defining atypicality, let’s keep in mind that NTs are slang for haven’t been dx’d with anything yet. Their turn is coming. Everyone on the planet has *something* wrong with them, be it physical, mental, emotional, whatever. Not one person on this planet is a perfect specimen of humanity. The idea that we’ve got to measure ourselves against each other is a bunch of hogwash with a sales pitch behind it, and I wish everyone would stop falling for the pausing to argue thing. Go enjoy something today.
When I was little, if I didn’t ‘behave’ properly, I got punished. When behaving properly gets judged by someone who is having a succession of very bad days around very unsupportive people, things can trickle down onto a child like a break in a dam, and then justification sets in and then recriminations abound, and pretty soon it’s not about the child needing help at all, but about other people desperately needing help themselves and not understanding why their worlds are screwed up.
So to sit around arguing over semantics seems a bit time-wastey to me. Sitting around defining religion and salvation and the world sliding into a big black hole seems a bit displacing coming from people whose lives are messes.
Aspienado was spawned out of a really big mess. Aspienado is tired of the words. Pinky says we must keep using words, so Aspienado wants to use words in a really big way. Pinky says
WE’RE WORKING ON IT.