THE FOURTH MATERIAL

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 people, 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 analysis 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 they 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 themselves 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.

THANK YOU…