as small as a world and as large as alone, countesscruella: I’M ANGRY AT PEOPLE CALLING...

8:40am August 11, 2014

I’M ANGRY AT PEOPLE CALLING THAT LITTLE BOY NONVERBAL!

“He’s one of two in his autism class who doesn’t talk.”

I DON’T EVEN LIVE WITH HIM AND I HAVE HEARD HIM SAY:

“That’s a Max cake and a Ruby cake!”
“That’s an aquarium!”
“Pick me up, Princess Mommy?” (His mother did not pick him up, and he only wanted her.)
“We’re out of gas!”
“[His brother] is Captain Hook!”
“Good morning!”
“Is the dog sad? Why is the dog sad?”
“Thank you.”

IF HE IS NONVERBAL, SO IS MY LITTLE BOY HIS AGE! He is literally! being! ignored!

Edit:
I also heard “Is that a birthday cake?”

I’ve seen this so many times.

I had a friend who was considered nonverbal. As far as I could tell, she was “nonverbal” because she talked very quickly in a high-pitched voice, and nobody was bothering to hear what she was saying.

Which could have just as easily happened to my extremely-verbal brother as a little kid, apparently. Except my parents actually listened to him, no matter how fast and high-pitched he talked.

Amazing that he could’ve had a very different fate if they hadn’t listened.

I’ve also had this dude talk about his “nonverbal son” and then post videos of his son talking.

And I understand that verbal is a spectrum.

And I understand that not all verbal communication is communication at all. Much of my communication growing up (when I was considered hyperverbal, at times) is a case in point: A lot of it wasn’t communicative at all.

But still. And especially since this is a particular guy, who would never let me get away with calling myself nonverbal, even though I’m less verbal than his son.

The way I describe it, pretty much nobody is 100% verbal and pretty much nobody is 0% verbal. Most people are between 5% and 95% at least. And “nonverbal” is just a convenient word for people who fall below a certain percentage and/or, like me, are “functionally nonverbal” and can’t use speech to communicate conversationally regardless of how many words we are or aren’t able to say.

And the same person can vary moment to moment, day to day, year to year, how verbal they are.

And the same person’s verbal communication can vary moment to moment, day to day, year to year, how communicative their verbal communication is.

So like…

I’m very close to 0% functionally verbal.

But I may be anywhere from 5-20% words-babbling.

And I do use single words accurately sometimes.

And very occasionally, very very very occasionally, I can speak communicatively in sentences. Like in the past ten years, I’ve had a few days where I could (with great difficulty, that felt like my brain splitting wide open in the most painful way possible) speak, under a situation of great stress. And another time I had a similar period that lasted an hour. And with a great deal of practice, I was able to say “I love you, Ron” to my dad because I knew he was dying and it would mean the world to him if I could manage it.

But that doesn’t mean that if I just tried hard enough I could talk any time I wanted to, and anyone who believes that deserves to be drop-kicked and stomped on a few times.

Most of the time, as in, if I can vocalize at all, my vocalizations are like thus:

“uh-huh” for yes.

“uh-uh” for no"

“aiyowoh” (more tonal than the actual vowels hitting the mark) for “I don’t know.

"uh-oh” for uh-oh.

And then a lot of vocalizations that are more tone than they are vowels and consonants, paired with gestures that are very confusing to most people.

And that’s basically my verbal repertoire most of the time.

Sometimes I’m unable to speak at all.

Sometimes I’m able to “speak” but the “words” I say have nothing to do with my thinking. I suppress t/hose words around people, most of the time, because they do nothing but confuse people. "I’ll return in the cool of the day" (sung, not spoken) isn’t going to help anyone understand my thoughts, and it’s going to give false expectations of my communicative capacities.

That’s the other thing, I can sing a lot of things that I can’t speak. Because unlike speech, songs come with full instructions on every aspect of what every sound should be like. They tell you what note to sing, how long to sing it for, and which words to sing on that note. I love singing along with things, whether they have words or not, and I love singing even when there’s nothing to sing along with. Some assholes have used this to claim that I could talk if I wanted. Some assholes don’t understand autism very well. Lots of people far more nonverbal than I am can sing far better than I can.

I can also repeat long strings of words that I’ve heard, read, or, sometimes, written and then read. But this isn’t voluntary. It just happens, most of the time. There are times when I can slowly and deliberately read out words that I’ve written beforehand, but that is so difficult and brain-rending that I don’t consider it possible most of the time. Most of the time, this is just random non-communicative echolalia. Again, I suppress it around all but the most trusted people.

I also have sounds I make, like meowing, squealing, and grunting. I used to suppress those more than I do nowadays. Nowadays I mostly let them happen whenever they’re going to happen.

I can also sometimes swear and say other words that aren’t swear words but are the same kind of category of words. Exclamation words. I try to suppress this to avoid adding confusion to people’s minds, but sometimes they pop out. Other times, I can’t actually do the full swear word or the full word, and funny things happen instead.

Like “Fffffffffff…… kkkkkk!” Instead of “Fuck!” That’s not deliberate self-censorship, it’s just the way swear words come out for me sometimes, with more consonants than vowels.

And I have a lot of sounds and words that just happen.

And I have verbal tics, including swearing tics. I know swearing tics are stereotypical but I’ve had them since I was seven, before I knew anything about Tourette. I probably have mild Tourette, from my father’s side of the family. I showed my dad a Tourette FAQ and he saw his uncle in it strongly, and himself less strongly.

This is the best Tourette FAQ I have ever read:

http://tourette13.tripod.com/FAQ/contents.html

Here is my favorite section:

The medical descriptions of TS and tics seem so weird, and the media accounts of it so spectacular, that it seems to be impossible to have TS and not know it.

However, the accounts in the literature are of necessity more extreme. Mostly, it is only if the tics are extreme that a Touretter seeks medical help for the tics themselves and it is these that get recorded as “TS cases.”

Also, most researchers write from the perspective of non-Touretters. Because TS mostly starts early in life, the tics, especially if they are not severe, mostly feel like a normal part of you - which they are. If you think of them at all, you may think of them as “something I just do,” or as habits you can’t seem to shake.

If you are conscious of the urge to tic, that conscious form of the urge to tic can take many forms: a sudden flashing of an unpleasant memory followed by a compulsion to cry “Kill me!”, a feeling of intense confusion and being overwhelmed at the smallest physical stimuli like a car speeding past you, a feeling of exuberance which you have to express, or any other vague feeling.

All this means that, from a personal perspective, tics can feel more like expressions of deep hidden emotions than “like meaningless nerve twitches.”

Because tics are unconsciously suppressible, especially when in public, you may find yourself ticcing only when you are alone. This may lead to two dilemmas: because you don’t seem to tic throughout the rest of the day one easily thinks that you are ticcing deliberately, that you are some sort of hypochondriac pretending symptoms. Also, because you find that you are unable to suppress them when you are alone, the tics feel as if they “take control of you.”

Also, if you are aware of the urge to tic before you tic, it is easy to construe the urge to tic as deliberately deciding to pretend to tic. Especially if the mental inner words associated with the urge to tic are sometimes something like “It’s been long since I ticced, I want to tic, NOW!”

It is easy to fall into existential dilemmas where you think, on the one hand, that you have a weak, perverted personality because you have these urges to pretend that you have an uncontrollable neurological condition, and on the other hand, that you are even more sick because you can’t seem to control this “perverted” desire to deliberately pretend you have uncontrollable urges.

Cracks your brain reading it, doesn’t it? Imagine feeling it.

Yep, it does. That’s exactly what it feels like. I used to think of it, and other aspects of autism and OCD and Tourette, as an addiction to certain behaviors that I couldn’t stop myself from doing, and I thought of myself as quite perverse for being compelled to do them. (I’m undiagnosed OCD and Tourette, but the descriptions fit me at certain points in my life so damn accurately that I have no doubts. And I’m officially diagnosed with autism.) Also, coincidentally, “Kill me!” is one of my tics. Often tics are emotionally loaded phrases, which is why swear words end up as tics more often than chance, even if it’s wrong to say all tics are swear words the way some people think.

Anyway, according to researchers I’ve talked to, swearing and exclamatory words are a different part of the brain than other words somehow, so that explains why I sometimes say “fuck” or “oy vey” or whatever. (In my last year or two of acquiring new words, there was a Jewish aide in my special ed class, who used a lot of Yiddish expressions. It’s embarrassing to me to use words from a culture that isn’t mine, but my mouth has a mind of its own and I’ve never been able to stop it. Fortunately my Jewish friends have been more amused and understanding, than offended. Especially if they understood what happened.)

Not sure how that explains my truncated swearing, though. Like “Fffffff….kkkkk.” Or “Shhhhhh…tttttt.” Other than that’s sometimes what my language looks like anyway, when I’m not quite able to form words. Because it’s not like I have just one “background” level of language. It’s more like I have a range.

There’s the times when no matter what I do, speech isn’t going to come out. Whether that’s communicative or not, it’s just not going to come out, period. I’d say that’s over 80% of the time.

And of the rest of the roughly 20% of the time, my speech is divided up into a number of levels, and a number of different problems.

Sometimes it’s so distorted and slurred that – back when I was still able to talk some of the time – my friends referred to it as “instant cerebral palsy” for the way it sounded, it could go from intelligible to unintelligible in seconds. I now suspect this to be related to myasthenia gravis.

Sometimes I have the ability to use certain sounds to communicate, the ones I’ve described before – uh-huh, uh-uh, uh-oh, aiyowoh, and assorted intonations without actual words attached to them. (And for anyone who wonders, I’ve run into other speech-impaired people, including some autistic people, who can do those sorts of sounds pretty fluently but have trouble using actual words volitionally. So that seems to be a thing, whatever it is.)

Sometimes I have a lot of noncommunicative echolalia – words that are repeated from various places, but that means nothing about what I’m thinking.

Sometimes I have something I’d call semi-communicative echolalia. I don’t talk about this very often. It’s where my mouth starts making noises that sound like speech or singing, just like any other echolalia. Like non-communicative echolalia, it doesn’t directly reflect my thoughts. But unlike non-communicative echolalia…

…it seems to reflect something of the situation that brought it to rise. I wish I had a really good example right now, but I don’t. This is a situation where the words are not consciously communicative, and don’t reflect my conscious thoughts. And yet they do reflect something about the situation in which I find myself. Usually the reflection is something metaphorical rather than something literal.

Like… maybe I’ll be singing a line from “Jolene” by Dolly Parton. It’s not that I’m literally imploring someone not to “steal” my significant other from me. But it may well be that I’m afraid someone will inadvertently take something from me without realizing the value it holds to me. So that song will pop into my head and I’ll sing a line or two.

The same thing can happen with poetry, lines from movies, lines from books, or just words or phrases I’ve heard other people use before. It all has to do with matching certain words to a certain context. This reflects some of the earliest ways I communicated in words. For instance, my brother once barked at me from inside a closet, creating a startled feeling in my stomach, and thereafter, “You gave me the dog” meant “You scared/startled me.”

So I still seem to have some residual ability to communicate in that way, even when my other ability to use words to communicate doesn’t exist anymore. This, by the way, is what they mean when they talk about autistic people using unusually metaphorical means of communication.

[And yes, they do simultaneously claim that we’re incapable of anything more than literal language, and also claim that our speech patterns are unusually metaphorical. This is typical of nonautistic lack of understanding of why we can be both very literal and very metaphorical all at once. So they just say we’re both too literal and too metaphorical and leave it at that without even trying to explain it.]

Very rarely, and I mean on the order of once in years, I’ll have communicative echolalia, where I’ll be able to use echolalia in order to deliberately communicate ideas. This is what I use all the time in my writing, but it’s quite rare that I can do it at all in speech. When it happens in speech, it tends to start out quite stilted, single words, but sometimes progresses to multiple words or even sentences. But this has only happened a couple times since I stopped being able to speak communicatively (which was a long time ago), so I can’t generalize about it. I do remember that the longest period it happened, my word choices, intonations, and regional accents seemed almost random.

What I don’t have, and never seem to have had much of, is the ability to just say words and have them mean the things in my head, without recourse to echolalia or other tricks. And that doesn’t exist in my 20% of the time I can form words, either.

But there are other things that linger in that 10-20% of speech and speech-like sounds that remain:

There’s random words and phrases that don’t seem to have any meaning to them at all. Which… really don’t interest me much.

More interestingly, to me, anyway, there's intonation. This is where I’ll be making noises, that have nothing to do with words, but the intonation is perfectly intact as if I’m having a conversation. It may be very simple – like a couple words – or very elaborate, like whole sentences.

And so there’s 80-90% of the time I just don’t have the ability to speak at all, regardless. But the 10-20% of the time that I do have something approximating speech, it’s pretty varied in terms of how communicative it is, and what form it takes. It can be words, phrases, or sentences. It can be spoken or sung. It can be non-communicative or semi-communicative. And it can vary in terms of how randomly the words are put together. And that’s just the basics.

And I’m someone that’s normally considered nonverbal, or functionally nonverbal: I’m so rarely capable of using speech to hold a communicative conversation, that it’s not really useful to call me verbal, even though I can sort of communicate by grunting and gesturing some of the time. And most autistic people considered nonverbal have at least this amount of verbal skill.

It’s especially confusing to people because of the fact that with autistic people, there’s always a question of whether our speech is communicative or not, and how much of it, how much of the time is communicative. Which is mis-estimated in both directions on a regular basis. For instance if our speech intonation sounds sufficiently unusual, people assume we’re simply talking to ourselves and not to anyone else, when we may well be communicating to other people. (That happens a lot with high-pitched, breathy voices that sound like they’re ‘not talking to anyone in particular’.) But if our speech intonation sounds at least somewhat 'normal’, then we may be communicating actual thoughts only 5-10% of the time or less, yet people will assume that everything we are saying reflects our actual thoughts.

So I’m always extremely dubious of attempts to work out exactly how verbal an autistic person is, from the outside. Because it’s so easy to overshoot in one direction or the other, thinking you know what is going on inside their heads.

But I do have to say it annoyed me when that one guy told me that I couldn’t call myself nonverbal because I sing (as if I could just communicate everyday information by singing, ~yeah right~), but then called his son nonverbal who was making clearly communicative remarks on a level that, at this point in my life, I’m not capable of doing at all. And of course, at his son’s age, I had superficially better speech with less communication in it. All of which illustrates how hard it is to say how verbal an autistic person is, by looking.

I tend to go, for myself, by something like:

1. What is the largest percentage of the time, on average, can I speak at all on any level?

2. Of the percentage of the time that I can speak, how much of that is communicative?

3. Of the part that’s communicative, how much can the average person understand?

And that just gives a very rough estimate of how verbal I am overall. And that would, currently in my life, give me the picture of being functionally nonverbal. Meaning, I don’t have enough speech to hold a conversation that reflects the thoughts in my head, in a way where my words tell the other person what I am thinking, in a way that they can understand. And that’s despite having about 20%, at best, of the time, that I can make sounds that sound like words or singing (but either aren’t communicative, or aren’t communicative enough, to count).

All understanding this is just at this one point in my life, and that these things have varied a lot over the course of my lifetime. The amount that it’s varied for me is somewhat unusual, but not as unusual as you’d think, and certainly not that unusual for someone with autistic catatonia (which can take someone who’s never had a speech delay in their life and render them close to 100% nonspeaking).

Also understanding that these are observations I’ve made from watching lots and lots autistic people, both child and adult, not things I’ve gotten from reading papers about us or something. Not that I haven’t also read a lot of papers. But you can get a lot more from people than from papers, overall. And I’ve dedicated a lot of my adult life to understanding autistic people from our perspectives and experiences, because very few people seem interested in doing that. And at any rate… I think it’s more useful to look at how verbal a person is, than whether we are verbal, and also to look at in what way we are verbal and in what other ways we communicate.

So like… at this point in my life (and I can’t emphasize that part enough, because people assume that autistic people don’t change, and that’s not always true):

I’d call myself functionally nonverbal if I had to give myself a label verbal or nonverbal. Most of my language-based communication is typed, and most of that is a sort of delayed echolalia (echographia?) mechanism carried over from how I initially learned speech. Most of the time (80-100%), I’m not capable of vocal communication in words. When I am, the most likely form of vocal word-based communication is likely to be semi-communicative song echolalia, although I tend to suppress this around other people. I can and do frequently also use a combination of grunting and wordless intonation to get a point across. I’m most comfortable communicating in a variety of ways that don’t involve words, ranging from intonation to the arrangement of objects, but I don’t often have the opportunity to communicate with other people who are likely to use or understand those modes of communication. I also like to communicate through music or visual art. But for the most part, I communicate by typing letters, or by using picture symbols to create typed words.

And that’s just like a short paragraph I’d use to describe my current communication situation, but it works.

Unfortunately, autistic communication has so many different dimensions to it that it’s difficult to sum up quickly, much less as 'verbal’ or 'nonverbal’. But I do hate when I see someone who really and truly is communicating using spoken words, being described as “nonverbal” just because something about the tone or rate of those words confuses people into thinking no communication exists. I’ve seen that happen to a lot of autistic children who are then described as “low functioning” or even “non-communicative” entirely because of some surface feature of their speech that made people think it wasn’t “real speech”. Meanwhile, right next to them were students where the opposite miscomprehension was happening, and they were being assumed to communicate more than they were communicating. It’s almost as if nobody’s ever capable of getting us right.