Category Archives: non-speaking (at times)

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!

Autistic community, Autistic People of Color, Clinical things - meh, Functioning Labels, non-speaking, non-speaking (at times), Self-advocacy, self-dx

autism diagnosis: deciding on pathways

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trigger warnings: anti-neurodiversity, anti-self-advocacy, identity policing, ableism, anti-autistic nonsense

i’m writing this in the hopes that people won’t have to learn the “terrain” of autistic diagnosis and the Autistic community the hard way, which is mostly what i did (but with a lot of help from the self-advocacy and neurodiversity communities). while i am grateful for the efforts of self-advocates who got me through it all, it wasn’t the best of experiences — so much information! so many conflicts! it can be draining. anyway, here’s the show.

when I self-dx’d, I’d been in counter-cultural movements for decades. “accepting who you are unconditionally” is something i became aware of in my teens, and that i periodically refreshed throughout my life. (i’ve come out of a *lot* of closets.)

mostly what i needed to accept and embrace being autistic was information (especially from self-advocates as well as #ActuallyAutistic people who share similar multiple oppressions to mine), and a bit of a push.

so, self-diagnose? get diagnosed “officially”? both?

*if* you can “go through the official channels”, and *if* it’s going to get you something, sure. i did and i don’t regret it. it’s also an expensive and/or arduous, time-consuming process, in a lot of cases, but it can be paper in hand.

here’s some more things about community conflicts (and solutions), in the hopes to make things easier for whoever reads this, especially if you’re considering if you’re autistic, or are recently diagnosed (either self-dx or “officially”).

get away from the people who try to gatekeep who is and who isn’t autistic as quickly as possible, unless you have the stamina (a *lot* of stamina) to challenge or confront them. i’ve seen people become very overwhelmed in comments sections, because they tried to reason or argue with people that assert that self-dxing isn’t valid, that being diagnosed as an adult isn’t valid, or even (especially from some parents in “the autism community” — as in, parents and clinicians, most of whom aren’t autistic, and many of whom are cure-focused rather than self-advocacy and neurodiversity-focused) that you can’t be autistic if you mask your being autistic. this includes people who say “neurodiversity lite” things, but make the same assertions as anti-neurodiversity people do.

this is widely accepted as being false, both by people in the Autistic community, and by the standards bodies that publish the DSM and ICD – but they say it anyway.

simply put: they’re wrong. that corner of things is a “dumpster fire“, save yourself the stress and bother, if you can.

cynthia kim addresses this as well:

Adult ASD: Self-diagnosis or Professional Diagnosis?

Adult ASD: Moving Forward After Diagnosis

also, people who are against self-dx and adult diagnosis will claim that autistic people who are inclusive of *all* autistics, are doing that because they’re high-functioning. not only is that offensively anti-autistic, and anti-disability rights, it’s also ignorant of the work people have done, including autistic self-advocates who aren’t labeled as “high functioning”.

Decoding the High Functioning Label

Living My Disabled Life: My Story Is Mine to Tell Part 3

About The Film

instead of getting stuck in the drama of all that, read cynthia kim’s excellent “I Think I Might Be Autistic“, and read or watch the blogs and videos of self-advocates, such as Amy Sequenzia, Amethyst Schaber, Lydia Brown, Kieran Rose, and Neurodivergent Rebel. if you’re non-speaking to whichever degree, read this! as well as the book “Typed Words, Loud Voices“. If you’re looking for autistics of color, Morénike Giwa Onaiwu and Black Autist. if books are a good means of getting information for you, “Knowing Why“, “Loud Hands“, “All The Weight of Our Dreams“, and as mentioned previously, “Typed Words, Loud Voices” all are excellent introductions to the Autistic community, and are self-advocacy focused. lastly, familiarize yourself with the Autistic self-advocacy organizations, such as ASAN and AWNBN.

Autistic community, Clinical things - meh, non-speaking (at times), Self-advocacy, self-dx

Assessment is finished, like the first morn

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*cues Yusuf*

let me preface this by saying: self-dx is as valid as ever, personally, culturally and economically. fuck off if you think otherwise.

i’m diagnosed “with” ASD now, as in officially. so if/when i need accommodations at work or school, i have something to point to.

the assessment process was sort of a nightmare (stress, unfamiliar building, new people), but I did it. it was very much on the clock, which for me, just underlines the limits of what a diagnosis represents. not in terms of its accuracy (as long as they know what they’re doing), but in terms of “how much can realistically be expected to get covered, given that time = money”. it also was stressful as hell, so “more time” isn’t necessarily a solution here, either. it was just the right amount of “oh, fuck” and “oh, good!”, given what can realistically be expected.

i think it’s really important to insist, if not demand, that your needs get met as much as possible, to whatever degree that’s possible. expect to be pushed back against, highly confused at times, and feeling like you’re being gaslit.

if you need accommodations for being partially or completely non-speaking: let them know in advance! i didn’t, and i wish i did.

also, the ability to bring someone along (if possible, it wasn’t for me personally) is important as well. let them know in advance about that, too.

the self-discovery (by whichever means) to diagnosis (by whichever means) process – self-dx, getting referrals, getting diagnosed (if that’s possible and desirable) – reminds me when i gender transitioned, in a way. trans people wind up with other diagnoses (yes, gender is a diagnosis), both false and accurate (but frequently false), just like autistic people. we get revolving doored for years, or decades, in both cases. this is finally getting better for trans folks (the present U.S. administration’s chicanery and corruption aside), is in process for enby folks, and still has a long ways to go for autistic folks, women and people of color especially. it’s not a fast, or easy, process, either way.

but it’s done! done is good. i’m “official”, so in situations where that *actually* matters, i can say “i’m official” and back it up. since i live in a country where the idea of believing someone at their word when they self-disclose isn’t always common, this is important. which is exactly why it’s total bullshit that it’s not available free of charge! also bullshit: it can affect access to some forms of health care. if you go this route, it’s important to know when and how to disclose: not everybody is friendly, not everybody has your best interests in mind.

lastly, and this is really important: anybody who thinks that autistic people who have significant daily support needs can’t self-advocate at all? that people who self-dx aren’t valid, and shouldn’t be welcomed into the Autistic community as equals? that autistic adults who mask, who struggle and try and fail and sometimes succeed in NT society, or succeed and fail over and over again, because the rules make no sense, aren’t autistic at all? fucking suck my shorts, you and your pathetic hate speech campaign that masquerades itself as concern. you’re simply wrong, and need to climb off your heavily entitled soapbox. “we are all part of one spectrum“.

ok, so i’m official. /whoop this chapter of life’s journey seems to be ending, so a new one can begin on its basis.

i think Dionne Farris sums up my feelings best here. listen to the tracks for the full feeling and sentiment.

Hello Morning, Now when does the fun begin?
Goodbye Morning, Sorry it had to end
But see I cried just a little too long
Now it’s time for me to be strong

Everything’s so crystal clear now
All I needed was time
Everything’s so crystal clear now
I’ve cleaned my mind

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.

Autvoid, Communication, non-speaking (at times), Passing/Masking, Self-advocacy, Social Cues

“i’ll do anything once”

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when i was younger, there was this habit i got into in my 20s, which gradually waned over time. it’s a variation on “learning social situations” — my rationale was that if i make a mistake, i’ll make it once, then learn from the situation.

the only problem with this thinking is that in a lot of situations, i’m an associative learner, not a crystalized one, and some of the situations i was in cascaded over months or years. there are a potentially infinite number of situations i can find myself in by definition, and that for a variety of reasons, may or may not easy to extricate myself out of. this is further compounded by my being both too trusting and too nice. as a result, i’d get used, get fed up, get out of the bad situation, find another one, then do it all over again. not so much because of thinking “maybe it’ll be different this time” as “hey, look at this entirely different situation, i wonder what that’s about”. eventually, i started kicking myself over it, then i realized that wasn’t working, either – so i just pulled back from socializing, first in terms of intimate relationships, then friendship.

in my late 40s, the way i started to deal with this was to simply avoid people. which is fine and all, but i do actually like interacting with people, i just don’t like having my senses overwhelmed by speaking (or being spoken to), having my visual and auditory thinking being disrupted by verbal rhetoric, and being so overloaded as a result that i couldn’t catch my over-trusting, oversensitive, hyperempathic nature being messed with.

now that i’ve learned better well enough to just not get myself into shitty situations to begin with (of whichever nature), i think there’s a solution for this sort of pattern that goes deeper than the also-important “learn social situations” one.

for me, i need two things in place for this to get better:

– i need to accept and embrace being non-speaking (at times);
– i need to trust my visual, auditory and associative learning processes.

one of the ways i reflexively learn things is by what my senses tell me, and by visual memory. example: if i read something visually descriptive, my mind turns it into a visual representation of the text. (i can also speak text if its written down, even if i’m otherwise non-speaking, sometimes.) where my senses come into play is that my mind will use my sense of recall and visual learning to draw a symbolic map of a potential danger, or need. if i trust both of those things, then i can learn how to avoid situations based on non-verbal communication and thought. otherwise, i’ll start convincing myself that the “word things” (words that i’m thinking or saying, but that don’t match what I’m trying to communicate) i’m saying to myself in order to translate and verbally communicate in the situation are actually real. it’s a form of masking, that thankfully i learned well enough to avoid becoming too invested in, but it’s still a risk for me. this mixed with being too trusting and too nice is a recipe for disaster.

these two things play off of each other. it’s a LOT easier to “parse” my visual thought processes (and my auditory ones) if i don’t have to translate into text. this is where AAC can come in very handy; my mind likes to shut itself my speaking ability temporarily if it can’t keep up with the translation into words and speech. so then, i can’t speak, possibly for a sentence, possibly for hours. if i really get overwhelmed, my speech will stop working altogether for days at a time (or become much more limited). the same thing goes for grammar – i’ve had occasions where everything seemed to be going fine with my creative writing process, then i just stopped altogether and couldn’t do so for years. it’s a type of autistic burnout when things get to that point.

until i finally let go of masking my frequent inability to speak, and embraced myself as a non-speaking (at times) person, I wasn’t able to accept and connect with tools such as AAC. my hope is that using AAC in a fluid way that maps to my neurology means that I can communicate without being overwhelmed – in other words, i’ll use a combination of AAC and speaking to whatever degree is possible in the situation. if something is too difficult to speak or type in the moment, i can write it in advance. if neither of those are possible, i can take my time. if all of that not permitted, that is when I plan to raise holy hell about it, in the finest crip liberation, “no spoons, only knives” direct action sense. hell hath no fury like an infinitely minded woman who has been indefinitely fucked with. onward.