Saturday, March 11, 2006

Speaking of speech

It's very common to divide autistic people into a 'speaking' and a 'non-speaking' group, and also to assume that the ability to speak implies the ability to communicate with speech. Those people who do so quite naturally place me into the 'speaking' group, since I'm most of the time able to produce understandable words, almost always strung together into sentences.

However, there's a large grey area between being fully able to use speech to communicate and not having access to language at all, and it's not linear either. There are many ways of communicating that doesn't involve speech, and many examples of speech that isn't functional communication. I frequently experience a lot of things that I call a difficulty or inability to communicate, that all feel very clearly different from one another, but that people who use the above categories tend to classify as either 'speaking' or 'non-speaking'.

This is a deplorably simplistic view of what actually goes on, and one that can cause very unpleasant situations. Since I haven't seen a lot of descriptions of what it's actually like to lose speech, or to be able to speak but not be able to use that ability to communicate (and those I've seen always seem to be missing things), I will attempt to describe some of the different ways I experience those things. Just keep in mind that there are a lot of other possible ways, too.

When these things happen, they usually pass after a few minutes to a few hours, or when I've had a chance to rest and spend some time alone, but in the meantime they can lead to all sorts of strange and potentially dangerous misunderstandings. Some of them are also very difficult to clear up afterwards. Explaining that I couldn't speak at the time is very easy compared to explaining that I was speaking but wasn't (or mostly wasn't) communicating.

Here are a few examples of what happens on the inside.

  • I may lose my connection to the huge cache of prepared sentences and sentence fragments that allow me to carry on conversations in near real-time. When this happens, I still understand things said to me, but constructing answers takes a lot of time and effort, and thus I will be quite slow to reply. To get some idea of what this is like, imagine being dragged out of bed onto a podium to give a completely unprepared, formal speech.

    This usually counts as 'speaking', unless the person is very impatient, in which case I may be too stressed to come up with anything, and end up being 'non-speaking'. When I do manage to say something, it's usually not what I would count as functional communication, since it's rarely accurate.
  • I may lose the ability to improvise and modify the existing sentences and fragments according to the situation. This turns my my speech into 'advanced echolalia', where I can give a correct response if and only if I happen to have already prepared and memorised it. If I haven't, I can either say nothing or choose the least incorrect alternative. This is sort of like trying to have a conversation when you can only use complete sentences from Star Wars IV.

    As long as I use what I can find, people definitely count this as 'speaking', although I may or may not consider it communicating, depending on how many useful sentences I have in store. It can also lead to misunderstandings that are very difficult to clear up afterwards. However, if I choose to remain silent in the hope to avoid such misunderstandings, it counts as 'non-speaking'.
  • I may be unable to muster the degree of muscle control necessary to get my mouth to form words properly. Speaking is still not an automatic activity for me, and even on the best of days, I need to concentrate to get my tongue, lips, jaw and diaphragm to move properly. Sometimes there just isn't room left in my head for all of that and my speech becomes garbled as a result.

    If this happens in a stressful situation, I usually don't even bother trying to struggle with it, as it's extremely frustrating to do so, and I will thus be 'non-speaking'. In a quiet room without hostile poeple, I. May. Speak. Very. Slowly. And. Deliberately, and will thus be considered 'speaking', if somewhat odder than usual.
  • I may due to stress, overload and demands for rapid responses begin to confuse sentences I've prepared on my own with ones I've read by others, i.e. 'topical echolalia'. This often results in me saying things that are subtly (or sometimes radically) different from my actual opinions, but chances are that I'm unable to analyse the words I'm using at the moment I'm speaking them, and thus be unaware of this until after the conversation is over.

    This naturally counts as speaking. It's just isn't functional communication, but often rather a desperate attempt to bring an end to an overloading encounter I don't feel I can just walk away from.
  • I may be unable to bridge the mental chasm between my intent to say something and the act of actually starting to say it. I can't really describe it any better than that. Sometimes I can bridge it right away with very little effort, and sometimes I can't even begin to, no matter how hard I try. I may have understood everything being said to me and know exactly what I want to say in return, but be unable to initiate speech.

    This definitely counts as 'non-speaking', although were I given a keyboard, I would still definitely be able to communicate.
  • I may be unable to parse the other person's words, due to background noise or fatigue or both, and end up hearing something like "ertingfyrtangliopreglamopan", which isn't very helpful. This has nothing to do with expressive speech and very much to do with something called APD.

    However, as I don't ask people to repeat themselves unless I'm in a situation where I know it's allowed, I may therefore have no idea what was said. Being unable to give an appropriate reply, I tend to remain silent rather than risk saying something inappropriate, and will thus be seen as 'non-speaking' or at least non-participating, even though my speech may work just fine.
  • I may hear and parse the words without problem, but be unable to put them into context or extract meaning from them. In this case, I recognise each word in isolation, but still have no idea what the person meant by uttering those particular words in the order xe did. It seems like a stream of random words for a moment, after which they melt away and I'm left with no memory of what I just heard.

    This has nothing to do with expressive speech either, but for the reasons outlined above, may sometimes be seen as 'non-speaking'. Also, at these times it's quite useless to ask the person to repeat xemself anyway, as anything else the person says will also seem like random words.
  • I may be too overloaded to have any means of thinking of or remembering an appropriate sentence, but still be able to speak. If I'm then expected to give a reply or if I really need to call attention to something, I will usually grab the first word (or set of words) I find laying around in my head, which tends to produce something like "frying pan salad", often accompanied by flapping.

    This is certainly both speaking and communicating, but will often get interpreted in really strange ways or just dismissed as meaningless and ignored by people who don't know me. Therefore, it only qualifies as functional communication with certain familiar individuals, i.e. those who know that it means to back off, or stop making loud noises, or look where I'm pointing, etc.
More than one of these may of course occur simultaneously and in varying degrees. They may interact with and replace one another. They may appear for no apparent reason and disappear the same way, although they're often triggered by or at least made worse by stress and sensory overload. They are called 'speech' or 'lack of speech', but I think they should have better names.

PS: While I was finishing this, Ballastexistenz put out a very good entry on poor assumptions, partly related to speech.

Update: Linguistic and formatting tinkerings.
Update: Ballastexistenz moved again.
Update: Linguistic tinkerings.

7 comments:

Zilari said...

Reading your entry gave me an extreme sense of familarity. I am so glad that I am not the only one who experiences the world of speech in this manner...there is indeed quite a difference between "being able to make word-sounds" and "being able to communicate consistently". The same goes for being able to hear word-sounds as opposed to actually being able to make sense of these sounds all the time. Personally I'd be much happier to communicate in text practically all the time; and there are days when I do, when I can get away with it.

Another thing I tend to have issues with that you may be able to identify with as well is an inability to control my "inflection" or tone. Sometimes I just quit speaking at all on days when it seems that everything I say is met with not responses to my words, but responses like, "And why do you sound so angry / bored / snappish / tired / sad?" when in fact I am none of these things.

It takes quite a bit of effort to form functional speech, and even more effort and energy when I haven't had the opportunity to "prepare" the speech in advance to some extent. I am literally unable to make most phone calls unless I write down what I need to start the conversation first. Explaining this to people is extremely difficult...I get comments like, "Come on, just pick up the phone and call (x)!" Spontaneous, improvised speech is not really a part of what my brain does. Controlling and forming and choosing my words is a complex, intensive, multi-step process and attempting to control all this at the same time as trying to control my "tone" is basically impossible.

The thing that really gets me about all this is that I wouldn't have 90% of the communication problems I experience if the primary form of human communication was "text". The language centres of my brain are definitely more thoroughly wired to my fingers than to my jaws and tongue.

Thank you for putting your own writing skills to such splendid explanatory power. I have actually been going through your journal and remarking on the similarities I see...it is truly bizarre to grow up being "that weird girl" and thinking I was just some sort of mutant, but eventually find people (online, for the most part) that I can actually relate to in terms of perceptual and cognitive experience.

elmindreda said...

Oh, yes. Forgetting to set an appropriate tone of voice or just not having the energy to do so, and writing scripts for telephone (and indeed IRL) conversations, are both very familiar.

If the world was a very different place then I'd love to use only text, but this world is too ill suited for such means of communication for me to want give up speech entirely. I did lose my voice recently though, in the best environment possible, and spent a day using my laptop and PDA instead. It was truly wonderful, but I am aware that it was very mych an exception.

As for reading back and recognising things, I did the same with your blog a while back, finding many little things that I didn't know I shared with anyone.

codeman38 said...

I can associate with everything you've mentioned in this post as well.

The metaphors about being dragged out of bed to make a speech and about being able to speak using only lines from Star Wars were particularly striking; they put into words the sort of frustration I experience in communication far better than I ever could have! (What's also frustrating is when you choose the *wrong* line, because people expect an immediate response and you haven't had the necessary processing time; I've had situations where someone relayed some *negative* fact, I said something like "good to know", and only then did I manage to fully process what they had said and realize that's the wrong response.)

I've also definitely experienced the situation with 'bridging the mental chasm'; there have been moments when I knew exactly what I wanted to say, but I just could not get the words to come out. I had no problem typing them, or even writing them out by hand; and there was nothing wrong with muscle control or anything else-- it's more like some sort of translation library between thoughts and vocalized words didn't manage to load.

And on the APD note... sometimes I've been seen as 'non-speaking' because I didn't even realize that someone was addressing me. Combine that with the difficulty fetching prepared responses, and you've got a disaster just waiting to happen; this is the situation I often find myself in early in the morning if someone attempts to start a conversation with me when I'm still not fully awake...

supposedly susan said...

What an amazing insight.
Thank you for this post.

Anonymous said...

Elmindreda, I wanted to thank you informally for having communicated so clearly to me, the "more-or-less NT" parent of an ASD teen, what can be going on in his head, and particularly when he was a youngster, when he was undiagnosed and would stomp off to his room speaking, as I put it at the time, "random neural firings" just before he trashed his room....

And he does not do any day-to-day conversation with text at all. So he's stuck with whatever, if anything, can come out of his mouth.

I have passed the link to your "Speaking of Speech" on to my homeschooling-(in-the-USA)-your- spectrum-kids elist.

Jennifer said...

I have Asperger's. This post got me thinking of my own issues with speech/communication. I am by most definitions verbal. I tend to talk to my self quite a bit. That said, I noticed some similarities with things yo do and things I do. If I have to confront someone about something, I tend to think up what to say for every possible thing. "If they say this, I will say this". This may be due to difficulties in finding the right words under stress/anxiety. Also, when someone gets mad at me or I get in trouble in some way, I tend to shut down and have trouble speaking. Although being verbal is a diagnostic criteria of Asperger's, maybe we aren't as verbal as some people think.

PurpleMutant said...

I remembered something to add to my above comment. Sometimes if a question catches me off guard, if I reply right away my reply becomes garbled or I say the wrong word and have to backtrack and correct what I said. For example. The other day I went to target to pick up a prescription. At target the cashiers stand there waiting for guest to walk by. At which point they say "are you ready to check out?" and walk the person to their register. I had just picked up a prescription so I wasn't buying anything. But, when the cashier asked me if I was ready to check out it caught me off guard. In a situation like that, a person expects and immediate response. When I started talking the words came out garbled. I was finally able to say "no I just came to pick up a prescription". Given my own difficulties with speech and communication I agree that verbal/non verbal are far to simplistic as categories.

Jennifer