Henceforth and hereto, let it be known that this post, written between last night, then rest, then again at 3:30 AM, on this day of the year of the corn, 2019, shall be referred to as “being back on my bullshit”. Let it be known that I, queen of the internets, may venture into the dark realm of zoo exhibits, in order to gather our tally-hos as a community subgrouping of wretches, each in our own unique ways, as it so befits us, amen.
Enough with the puns, here comes the sex pistols.
Someone mapped out their speech levels, from fluid speech to non-speaking. This is so great and happy-making. I got to thinking: what if all of us who have varying kinds of speaking challenges did this? Here’s mine:
~~~ You have now entered the inharmonic passing realm ~~~
1) Speaking-as-masking. This is limited for me, and burns me out, but it happens. Sometimes, scripting works, but I try to limit it. Also, there’s this point I get to sometimes as I’m starting to enter social burnout where I can speak defensively to try to get someone to shut up, but that doesn’t last for long, usually. If I switch between levels, as described below, sometimes it can get drawn out, which…sighs, that usually makes (masks?) things worse (walrus?). This, along with alternating 2, 3, and 6a, is how I was able to be onsite as a tech writer, even if it meant falling apart when I got home (or on the job). sings We bring more than a paycheck.
2) Info dumping. I can speak fluidly, but about interests. Anything else, not so much. Which is great – if someone wants to listen to me info dump. (Yes, I need more friends with shared interests.)
3) Reading things off a page. I can usually do this, especially if it’s about interests, but also, if I have the energy, in general as well. Same goes for memorizing, although that’s tiring to rehearse, says the time I started to slide into autistic burnout because I was performing out too much.
4) Faking non-fluid speech. This requires some explanation. I’m close to non-speaking at this point, but I can rest on words, or utterances, to fill the gaps between not being able to speak.
Me: “Hunh. (pause) Let me see. (…) (…) (…)”.
Someone: “You ok there?”
Me: “Yes, give -” (…) “OK.” <mirrors “thinking something through”> “Wow, OK!”
Eventually, I can brokenly get the thought out, or sometimes, info dump a few paragraphs all at once.
~~~ Unmasked demarcation line, here be dragons and cephalopods ~~~
5) Blurting, echolalia, exclamations. (Hi, I can’t converse via speech for shit! :D) But also: “Shit!” “Mierda!” “What am I doing?” “uggggghhhhHHHHHHH” “ok, ok, ok, ok, ok.” Ok.
6a) Not speaking, because burned out. You couldn’t pry it out of me. I can type and form sentences, and write, just fine, although grammar may start slipping a bit. Maybe wait a couple of hours, or a couple of days, or a couple of weeks if you need me to talk. ASL is good btw, AAC is quite nice.
6b) Not speaking, because not burned out (or recovering from burning out). I’m happily ping-ponging across all the other levels, including the ones below, while working to be aware that 1-4 can use up all my spoons, then I’ll start burning out — so careful now, autienaut.
7) Not grammatical. Definitely not speaking. I’m still thinking, but ✨ it might ✨ shut off at times, or be more emotional, visual or auditory in nature. This is about as close as I get to being so-called pre-verbal, but wait!
8) “Post-verbal“. Aw, the poor middle-aged puzzle piece! Such fortress, much walls, wow. Earth-2047 Autism $peaks is quite worried about fluid adaptation. “Your parent isn’t like my child!” I’m in my own space, whether or not you decide to join me there, that’s your business. This usually happens if I’m really burned out, but it’s fluid (yes, there’s such a thing as being fluidly non-speaking) in motion between 6-7 as well. Come sit, we won’t walk.
So, there’s my levels. They tend to be somewhat discrete, but they can vary somewhat quickly, and can mix together at times.
The thing that gets me (and makes me sad and angry, tbh) is that people, NTs especially, don’t see how amazing this is – how there’s such a range of variations in human experience, around something that’s assumed to be completely binary in nature. “You either can speak, or you can’t.”
Also, all of our experiences across the speaking continuum, vary so incredibly between each one of us!
Ignoring this is another way that NT society misses out on the depth and range of our lived experiences. It’s both a shame, and their loss.
Another thing I’m (thinkthinging about) in relation to being intermittently non-speaking (or as Paula Durbin-Westby calls it, “non speaking (at times)“) is “what happens when I’m not in social or autistic burnout”? Especially since if I’m not in burnout, I’m still intermittently non-speaking, it’s just not as likely to be ✨ (Nope, not happening) for hours to weeks at a time. There’s been times where I knew that I wasn’t in burnout, such as when I had several days somewhere quiet, and was rested and relaxed — and I mostly couldn’t speak then, either.
Not being able to speak for me is a way of recovering from masking — just as masking in general can lead to burnout, and require a period where our defenses against NT society are stripped bare, so too does “speak-masking” require the same. (Amen.) As well as it being something that I just do. It happens, or doesn’t happen, or whatever.
I do wonder about what speaking would look like on a more regular basis, as letting go of cycles of burnout and recovery become (hopefully) more common, post-self-affirmation. Is it echolalic? That’s pretty well a given, but what if I have echolalic metaphors that point to echolalic speech and thought? I’ve had that happen. “The NTs, they are quite alarmed.”
Would I have my own dialect? Would I make up my own words? (I’m very certain of this. I love neologisms.) Make up my own frigging language? Would I sing things? (That’s probably a given as well — stimming! Interests! Stimming and interests! Yayayay! Joy++++!) Or some mix of AAC, ASL and all of this?
I haven’t *even* gotten into typing/writing, and how that interacts with (not) speaking. What if this entire post is translated into neurotypical rhetoric? (It is, btw. Paging Melanie Yergeau and Julia Miele-Rojas, intracommunity dialogue courtesy telephone.) My assumption is that at least someone who isn’t autistic is going to read this. Maybe. Who knows? Why even translate into NT-speak, though? What if my language was mine, and mine alone, and that’s OK? What if meeting us where we are was the norm, rather than NTs demanding that we do all the work?
So many questions!