#quin things

so one of the things that helps me get stuff done, frequently, is giving myself permission to just...not.

this can look like different things.

in grad school the key to me actually going to class turned out to be taking a leaf out of Howl's book, as in from Howl's Moving Castle, because when he needed to do something that terrified him, he resolutely told himself he wasn't doing it and wasn't going to do it. It's mental gymnastics because in this case you start off by knowing you really are trying to do the thing and that telling yourself your not, when you know you are and that it shouldn't work. And I imagine it doesn't work for some people, and maybe only works occasionally for other people. But I got to class more often, despite my severe anxiety, if I spent the time before I needed to leave pretending I wasn't going to. Maybe because if I knew I needed to try to go to class I spent all that time focused on that and how much it was awful and scary and bad but not going would have terrible consequences and some of internalized stuff about how my anxiety and issues meant I was actually weak and a bad human BUT when I was pretending I wasn't going, I spent that time not as focused on all that negative stuff and instead did actually relaxing (or at least not stressful) things you would do if you really were saying 'fuck this, I'm skipping, I can do what I want'. I dunno if that's why it worked, but it kinda makes sense. Either way, the only way I got to class reliably was by pretending as hard as I could that I wasn't going.

but now it looks a little different. I don't have the same schedules and deadlines. So now, usually it's more like I honestly give myself a pass. I look at the long list of things that need doing and rather than deciding I'm going to do them and then pretending I'm not, I actually say 'ehh, maybe tomorrow' because mostly that's technically ok. Yeah, there's a lot I could, should, need to do and it would be way better if I worked on it everyday, but there are no immediate consequences to just...taking a day off. So I decide to. No mental gymnastics. Honestly take the day off. But you know what tends to happen? Somewhere in the day, after doing only things that are easy, rewarding, and fun....I get actual, honest to goodness motivation and spoons and executive function to do something my eyes fall that needs doing. So I do it. Sometimes it's one small thing at the end of an easy day. Sometimes it's a ton of things of varying difficulties all day. It depends. But my most productive days are always the ones where I don't plan on doing anything in particular. And again, maybe it's just that, when I have a list of things I need to do and plan to do them, I just spiral into anxiety and am paralyzed but when I float on doing what feels ok I don't do that. I dunno. I can imagine this too wouldn't work for everyone or all the time even for people it works for occasionally.

It's usually more effective for me to not focus on what needs to be done or what should be done, but rather what I can do or what feels ok or even on avoiding stuff I'm anxious about. Putting any urgency in my tasks is a good way for the anxiety to shut me down. The anxiety eats energy and spoons and other mental resources so that I either just can't do anything or the cost is astronomical and has bad consequences for the future. If I just say 'yeah, I'm not doing that' then usually something gets done and costs comparatively little.

It's not perfect! Sometimes if I wait for a thing I should do to 'natually' happen with me being just chill....the wait is long....to the point of becoming a problem and developing urgently or consequences. And other people can completely mess up the strategy and start the anxiety spiral by helpfully reminding me about something or asking me when I'm going to do the thing etc etc. all as part of them just being human. You can talk to some people about not doing that kind of thing, but not everyone and not all the time. Sometimes, when you're going to get around to doing X is important to how someone else is planning Y and going '...when I get to it' or 'no no I'm not doing that!' doesn't work. And other issues too.

But adopting a baseline philosophy of going 'Yeah, I'm not gonna' in my head has generally improved my ability to do everything.

I don't always do things that way, but doing that most of the time seems to help with times it's not possible or convenient.

so, of course, this is not going to describe how it necessary works for anyone else ever, but I think it might be at least related to other people’s echolalia. maybe. idk. ANYWAY:

the dictionary definition of echolalia is...problematic and outdated. “meaningless repetition of another person's spoken words as a symptom of psychiatric disorder”. in autism it’s never meaningless. we won’t even get into the last two words. even when it’s vocal stimming for fun it’s not meaningless, it’s just not being used for communication but most often echolalia IS used as communication.

so for the rest of this post I’m gonna define echolalia, broadly, as “repetition of another person’s spoken words and the accompanying impulse to do so” but there are absolutely people who repeat their own words, I just almost never do and this post is about my echolalia. I include “the impulse to do so” because the dictionary definition only talks about the behavior and not why (it considers it meaningless so it doesn’t ask why) or what’s going on inside a person’s head, which for me is usually that thing is already repeating internally.

the most common set up for my echolalia is a trigger word or phrase that someone says and then my brain matches it to another time I have heard that word or phrase (delayed echolalia, since I’m repeating something I heard in the past). I then repeat the matched “sound bite”. So if some one says “I think the daffodils will bloom soon” I might start singing or speaking the line “and the daffodils look lovely today” from the Cranberries song. In this case the trigger word was ‘daffodils’. When I heard the word ‘daffodils’ my brain automatically matched it to another time I heard ‘daffodils’ and started repeating that. In that circumstance, I probably would try not to say the line as a conversational response since it wouldn’t make sense, but my brain is at the ready with something to say about daffodils. I might have the line, even if it’s not music, stuck in my head for quite some time whether I say it or not.

while I haven’t figured out what governs which words will trigger that response since it doesn’t happen with everything anyone says to me, though it does happens frequently, I do think I know a bit about what kinds of things my brain is likely to match things against. It is almost never something I heard just a person say in the past but rather something from media that I have heard repeatedly. Songs and movie quotes are very common, but so are book quotes since I listen to a lot of audiobooks/books read by tts over and over. That makes sense, I think, you’re more likely to remember things you’ve heard over and over and my brain can only use a database of things I remember as a pool for matching trigger words.

 for me there is a very auditory aspect to this, less about the trigger word, and more about how I recall the matched things. I do not have the same auditory processing issues that are most common among other autistic people, I do have some but I tend to have wayyyy more problems with visual data and thus I actually rely on my hearing to compensate for a lot of what I miss visually. so the fact that my brain stores a lot of things as sound files rather than as pictures may play into my particular echolalia.

I do not always remember everything perfectly! I can hear the matched thing in my head and be sure it’s exactly like the original but I am occasionally wrong. I also sometimes only match to a similar phrasing rather than an exact phrasing or a rhyming word rather than the actual word. That’s pretty rare but it happens.

for me this kind of echolalia is clearly related to scripting, while there are cases where the thing my brain matches is useless for conversation or communication with people who cannot see my mental processes, it’s a pretty clear attempt to provide me with a prefabricated response. and sometimes it’s a decent one and I use it and people basically never notice. People only ever notice when I’ve said something that doesn’t work in context, but they usually don’t realize that what I said came from somewhere else and wasn’t just random. And for me, I can usually only use scripts or models that I have heard many times. If you give me out a script for a situation I can’t use it unless it closely resembles something I’ve been exposed to multiple times before. it doesn’t matter how much I practice it, in the situation I will freeze up and say things I have heard said a lot even if they aren’t what I mean or don’t make as much sense. thus, the two do seem very linked in my brain.

This means that even when the echolalia doesn’t facilitate communication it IS related to communication. It’s not meaningless it’s just not always effective.

the same trigger word does not always have the same match. if my brain has multiple references for something floating around it will sometimes pick different ones to repeat.

slightly less common is that my own words or thoughts can act as a trigger for delayed echolalia. Last summer when it was hot I would often think or maybe even say something like ‘ugh I feel like I’m melting!’ which would then get a phrase from Welcome to Night Vale stuck repeating (”the melting point of birds” which...I did not say out loud). This kind of created a summer long issue because then whenever I was too hot, which was most of the time, “the melting point of birds” would repeat in my head over and over. I really didn’t like this and expect it will happen again this summer since it got so ingrained last year and I will like it even less. I may have to seek out a new reference to ‘melting’ that’s less nightvaleian and try to force an association. dunno if it will work. but the point is that while usually someone else triggers my echolalia, I can accidentally do it too.

usually my common echolalia isn’t too distressing for me, it’s even fun sometimes, but it can get annoying or disturbing depending on how long something gets stuck in my head and what it is.

when I am alone I will sometimes repeat the thing over and over out loud, though I don’t like doing this (see the thing about vocal stims below). when it comes to using echolalia as communication I usually say something just once even if my brain is repeating it over and over. it’s like having a song stuck in your head but it’s not always songs and even when it is it’s usually just one specific line.

it’s worth pointing out that the degree to which this exact echolalia is ‘just how my brain naturally works’ is debatable because both my parents had a few words that would cause them to burst into song when I was growing up. It was not as frequently as what happens in my head now, but if anyone said “strange” in my house when I was growing up there was a decent change one or both of my parents would start singing “when you’re strange faces come out in the rain, when you’re strange, when you’re straaaaaaange”. So the basic idea that a word could trigger one to repeat it in a different context (especially song) was something my parents absolutely emulated for me as a kid. My allistic sister will even do it sometimes. Again, near as I can tell this isn’t nearly as prevalent nor used for scripting in the rest of my family, but my way of using echolalia may still have been influenced by that habit of my parents or even something I learned from them and then adapted. The first time I can recall using echolalia at all I was in preschool but it was part of an attempt to get other kids to repeat movie lines with me, which failed at least in part because I was quoting a movie no else one had seen. The goal seemed to have been purely as a form of play so my echolalia has likely changed over time. (also that form of playing was intrinsically social....which...this is not the post to go off about that but !!!!)

Telegraphic stress echolalia is what I call what happens when I’m shutting down and on the cusp of becoming non-verbal. Telegraphic speech resembles how telegrams were written and both conserve words. This can happen to other autistic people too. But when I go telegraphic I don’t just use as few words as possible, I also exclusively use echolalia and not the delayed matching kind from above--I repeat things said to me in that moment. So if someone says “Let’s go to the store” the only words I have to work with are those and I will likely pick one to reply with such as “go” or “store” but this can be misleading. In that case I would literally be only repeating a word to indicate I heard and understood and not using them to communicate my feelings because if I’m shutting down I definitely do not want to go into a store. But I simply cannot say any words the person talking to me didn’t say first so even a simple “no” is totally beyond me. If the person were to even ask “Do you want to go to the store?” I couldn’t say no (or yes for that matter), but probably could shake my head thankfully. If, however, someone asked “Do you want to go to the store or stay home?” I would be able to say “home”. So while telegraphic stress echolalia is absolutely about communication, it’s just as limited as my delayed echolalia. Unfortunately it’s all I have available for verbal communication in those cirumstances whereas when my common echolalia fails to be a good response I can usually come up with something else.

ok so a few months ago we got a new car, it's a lovely gray color. A few days ago mum and I were in a parking lot and we both started walking toward different wrong vehicles--my mum walking toward a white car just like our old car. We're both really tired from not getting enough sleep during some major house remodeling. So mum just momentarily forgot that we had the new car.

this is not an angry anecdote, it’s resigned one. 

I went to the doctor today and the nurse asked me about the pharmacy I used, so I told her that actual it was changing because my insurance changed it’s policy, and I told her the new one. She made a note and didn’t ask me anything else about that. I got it all out in coherent sentences even using a voice that sounded like an adult and not a small child. I did really well, actually.

she also took my blood pressure, which I find to be sensory hell and so afterward I started conspicuously stimming (I was bouncing both legs and flapping my left arm pretty frantically). I didn’t even think about it, I just did because it was necessary. As she was leaving though it did occur to me that quite possibly that was well into the ‘disturbing’ territory as far as NTs are concerned.

when I was all done with the visit I went back to my mum in the waiting room. turns out the nurse had come out to confirm the pharmacy change with her.

I’m 33.

I am 33 and she asked me about the pharmacy and I told her in a perfectly coherent, reasonable way with mouth words and even the right tone and volume. She didn’t ask any additional questions. But she had to go check with my mother to make sure about the change. Because I am autistic. Because I take a stuffed animal into my appointments and I stim.

And I know--I know what it looks like to NTs, I do. I know she was, actually, just trying to do her job to take care of me by making sure about an important bit of paperwork. But my mother is NOT my guardian.

I am an adult and I am my guardian still.

it’s always going to be this way though, because I look about half my age, because I do take a stuffed animal with me, because I do stim. The cost of trying to look my age, of not taking the stuffed animal, of suppressing the stims is NOT worth whatever it might get me, not for me. But that doesn’t mean it doesn’t make me sad when people treat me like that.

it is though...definitely about being autistic. I think I might actually polish it up at some point, but here is the raw ‘Quin was 21 or so and didn’t know ey was autistic or ace or genderqueer' version:

A letter that starts with hello And a word that ends with yesterday The lost moonlight on the waves The waves of trembling gray flowers And maybe it’s been dead all along Or maybe things are just better alive   Something in a vision Told me everything ends And maybe I was looking back again Sometimes it’s easier to think that way And to hide in all the comforting pain Rather than stand up and face the truth Sand in the dunes that everyone leaves   But time is more than the hourglass   So could you just hold still for a moment? And let me breathe a bit, let me look around Maybe I’d rather you weren’t human at all But the dust from broken cities isn’t sand And there’s got to be a faerie to take my hand Because I can’t be left here alone with this world Let me hold onto the pretty pictures Just a little while…just a little while Because I made just pretty thoughts in my mind Beautiful things that shouldn’t be taken But maybe I’m not strong enough to hold on

And when you turn away, I’ve fallen The desert may be dry but I can see the waves still I can remember the pretty things Turned to dust, turned to dust, dust and ash And that is desolate indeed And maybe I never was who I was before Or at least, I know now I am not who I am now Stripped away down to my last hope I don’t need the crowd around me Just the space in between Dancing melodies enchanting stars in their skies Beyond the realms of the Earth you know

So you’ll excuse me if I stand by awkwardly I don’t know how these things are done I just make the sand sing, so you’ll have to explain These other arts of things Just be careful not to teach me too long Let me go, let me go I cannot stand in one place ‘Til all your dust settles For if I’m trapped or wait The sand runs out on my heart All I wanted was to please a little And to be a little, watching the pretty things

long before I encountered an actual written definition of a phobia, I had an internal method for deciding if my fears and anxieties were ‘just’ fears and anxieties or if they counted (to me) as phobias.

this method was based on an actual event, I was somewhere around 13-15 and in canoe with an Aunt on the Saint Lawrence River. She was taking me on a relatively short, leisurly canoe ride. I realized that the canoe was actually full of spiders. This lead to an intense internal struggle because I have a bone deep terror of both spiders and water (particularly murky water with lots of weeds which was exactly what the boat was on at the time). Under normal circumstances, the sight of a spider, no matter how small, would have resulted in me instinctively running for my life, probably screaming. I was, though, in a boat. My only escape from the multiple spiders was to jump into the water. After some panicked contemplation I discovered that in a straight contest between spiders and weedy, murky water, I would actually prefer to drown. But there was one other factor: my Aunt. If I jumped out of the canoe I would literally and figuratively rock the boat. If I did not die from the water, which, rationally I was aware was unlikely despite the irrational certainty that the water and weeds would drown me, I knew there was a distinct possibility that I’d have to deal with social consequences of jumping into the water. I spent the whole canoe ride trying to decide if water + social consequences won out over spiders, it wasn’t a simple or easy thing. They did, however, win. The nature of my particular brain with regards to fear means that the fact that the spiders did nothing whatsoever to me the whole time did not make me less afraid of spiders, rather, it made me even more afraid of ending up in a similar situation again.

so any time I was considering whether something that I was afraid of was a phobia, I’d ask myself “ X or spiders in a boat?” I the answer was immediately X, it wasn’t a phobia. I might be terrified of X and it might make my life uncomfortable and complicated but if I’d prefer to deal with it than be a boat of spiders, it wasn’t a phobia to me. If when I asked myself “X or spiders in a boat?” I started to have to think of more hypothetical details like “how many spiders? how big? how close? are they moving? Is my Aunt there?” and similar details about X then it was a phobia.

the eventual horrifying situation where “X or spiders in a boat?” resulted in “spiders in a boat” without hesitation or a need for details was when I realized I was probably properly traumatized and possible very thoroughly damaged and not confused, faking, weak, etc.

because I need them to be made of things that don’t make my skin crawl, and then I need them in styles and colors that aren’t screaming SEXY LADY or MANLY MAN (and the style still needs to be comfortable while it’s at it!), annnnnd I need them to be affordable.

and yes, cotton, but not all cotton actually FEELS good.