Category Archives: intermittently non-speaking

At the zoo, autistic burnout, intermittently non-speaking, Liberation, non-speaking (at times), Passing/Masking, Self-regulation

Wherein I think too much (but not too too much) about (not) speaking

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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!

Communication, intermittently non-speaking, Liberation, non-speaking (at times), visual thinking

And she was (speaking)

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A short while back, I lost all or nearly all of my speaking ability for two weeks, and it’s starting to come back to my usual range of intermittent speaking ability. It’s closer to what it’s like when it comes and goes throughout the day now, but also, I’m learning how to approach it from a place of more informed awareness. No more relying on “Well, I guess I’m pretending to be circumspect today”, or at least, I’m learning how to integrate that with other approaches.

A few days ago, I had full voice for a minute when I woke up.

My sense was to push on it, and see how far I could get, so I did.

All in all, it was about 20 words before it cut out again. It was full for about five words, then grew fainter, then started to (…) pause, then I started saying “word things” (words that aren’t what I’m trying to say). It was close to what I meant, but not there. Like saying “let’s see what done” instead of let’s see what this does”. After that, it went faint, and dropped out again.

My assumption over the past couple of the weeks has been not so much that this is new (I’ve been in situations where people expected me to speak and I couldn’t since grade school), but that it’s unusual to lose my voice, save for intermittent speaking ability. Not new, but not common, either.

The problem with this is that I’ve never measured my speaking ability on a daily basis. If I I was alone (including alone at my desk at work), and I got that “oops, can’t say words” feeling, I just wouldn’t speak. If someone tried to speak with me when I couldn’t say anything back, I’d just fake my way through it (says nothing, shrugs, smiles), or would grab whatever words I could, then if possible, throw the conversation back to them before my voice cut out again. Which is ok and all, but it’s definitely a form of masking, and is every bit as exhausting as all the other ways of doing that.

Yesterday, I went through these poems that I don’t have memorized, and was getting nowhere. So then, I started finding poems that I had cold at some point over the years. (I also keep my sets somewhat fresh – even older pieces get a read-through every once in a while, or if they’re really old, every few years. It’s in my head, regardless.)

The first one (more recently memorized) came out ok, but that’s one short piece.

Then I moved onto other ones.

It felt like I was turning a flywheel through molasses, but I was able to get it out, one after the other.

Once I did that several times, *then* I could read the unmemorized ones off the page, fairly well.

So then, I tried speaking again.

Nothing.

“Well, fuck it.” I typed “OK” in 72 point Helvetica, and just started at it.

That I could do. “OK.”

Turned my back to it, the ability to say it went away.

At 90 degrees, it’s sort of ok. It seems to scale, too – the closer I get, the more clearly I can pronounce “OK”.

It’s the same for saying “So then, I tried speaking again.”

“Well, holy fuck then, Batman. OK.”

My sense here, based on recent and past experience:

  • I can read things off a page, especially if I’m rehearsed and warmed up.
  • I can recite things if I’ve memorized them.
  • How well I can read something depends on visual and possibly, spatial orientation.

I need to test this out a bit more, but I think part of this is that “verbal” thinking for me is essentially visual – I’m strong enough of a visual thinker that it translates words into 3D space. That’s why the closer I am to looking at something, the more clearly I read it. It’s almost like “mental peripheral vision”. I already knew that it works the other way around – my mind translates text into 3D film-like images.

So when I can’t speak at all (or when I can say things, but they’re not what I’m actually trying to say), my choices are:

  • Memorize virtually everything (which is impossible).
  • Memorize scripts (which i can do, but it’s exhausting).
  • Read off of a page when I’m reading or presenting publicly, and use AAC the rest of the time — or alternately, use AAC as my voice.

I’ve decided on the latter. It’s far less energy consuming, and I can’t keep risking burning out just to say words because non-speech-impaired people prefer them.

Also, I know that masking having limited/non-fluid speech affects my mood fairly extensively. I’m a lot more clear-headed when I don’t have to be constantly translating words into speech.

Which in my case is probably more like “translating visual and/or auditory thinking into ??? (something) into verbal thinking into speech”.

Also, I don’t have a lot of these problems when I type, although that can cut out, too. I’ve experienced “linguistic burnout”; that’s what happens when I can’t write, either. Poetry especially, which is sort of like high-octane linguistic architecture, as opposed to essay writing, which is more compositional.

This is a lot like coming out – you’re the same, yet completely different. It’s challenging and transformative. I like it. 🙂

Conclusions, so far:

  • My losing speech was triggered by exhaustion and stress.
  • It’s not a linear recovery process – things don’t happen across a discrete series of step, more like “semi-random noise as it does what it does”.
  • It’s definitely not non-fluid speech, it’s a form of being intermittently non-speaking. The closest description i’ve found yet of what this is like for me is “non-speaking (at times)“. For contrast, here’s non-fluid speech. I can use some of what she describes in response to having non-fluid speech as a compensation technique, but more commonly for me, it’s a form of camouflage, which is why i’m letting it go as a strategy. (More information about both can be found here.)
  • With effort, I can read with some writings that i’ve memorized. Also, looking at printed words acts as a cue – it’s better than doing so from memory, even if it’s something that’s known by heart, like saying “OK”. That said, speaking from memory is still exhausting, reading from a page is much easier.

This is still in-process for me, but I think I’m getting closer to some conclusive answers. I’m definitely planning on using AAC a lot more!

One other thing: one of the reasons I’m posting all this in detail is that there’s very little in terms of support for non-speaking autistics, of all types.

It’s part of the social hierarchy that has been in place for decades based on functioning labels, which don’t represent the complex realities that many of us live and face.

Here’s Paula Durbin-Westby again:

“We need to change some of the ideas about “high functioning” and “low functioning” Autistics. Not being able to speak is equated with “low functioning”. A constellation of characteristics are said to be true of only “LF” people, such as self-injurious behavior, toileting difficulties, and not being able to speak or having limited speech, while “HF” people are said to have another set of characteristics, also fairly stereotypical, such as being “geniuses” who are good at computer programming and lack empathy. These binary divisions don’t address the wide variety and range of characteristics of Autistic people, and paint a limited picture of individual Autistics, many of whom defy (not necessarily on purpose!) the expectations surrounding their “end” of the autism spectrum.”

More on this (in relation to the divisions that functioning labels cause) can be found in this excellent piece by Amy Sequenzia.