warmly,

Donna *)

I do prefer to use a communication device. (Which is the phrase that got misconstrued by some people.) What I meant when I said that, is the same as “I would prefer to use a communication device rather than have no means of communication by words.” Believe it or not, there are people who can’t speak at all, and deliberately choose not to use communication devices. I have known a few. That’s probably one reason I use language like “prefer”. But to most people, it would be a non-choice, because most people would not view not communicating in words as a viable choice. So they’d say I have no choice but to use a communication device, and mean the same thing I do when I say I prefer to use one.

(Which language I use for it depends on which phrase my phrase-bank grabs. I wouldn’t take the difference in phrasing as seriously as you seem to. Even ‘choosing not to speak’ was a borrowed phrase I used at one point to explain why I tried to deflect people’s attention away from my repetition of a word like ‘cabbage’ out of context and with zero communicative content.)

But I don’t choose speech (if it can even be called that — repetition of sounds might be a better term to avoid confusing you) to be non-communicative, nor choose not to speak. I could not, for instance, decide one day that I was tired of typing, and begin speaking, not even if you had a gun to my head. (And please don’t try that approach.)

If you are the same person who has kept commenting, your repetition of the question several times despite a ton of information being provided to you, makes me wonder whether you care about learning about my means of communication, or whether there is a subtext here that I am missing. It reminds me of when people ask a gay couple “Which one is the man and which is the woman?” and then when they try to explain the reality of their relationship, just repeating “Yeah but which one is the man and which is the woman?”

Or also reminds me of a reporter (I’ve dealt with a lot of those by now) who is fishing for a particular soundbite that they are going to quote endlessly out of context and insist has a particular meaning that it doesn’t. For instance, one reporter asked me “Do you consider autistic people disabled?” and I said of course I do, explained our connection to the disability community, and so on and so forth. But she kept asking the question over and over again. When I did not give her the answers he was hoping for (“no”), she just made one up and used something about “Seeing autistic people as different, not disabled” in the headline.

Or of a person trying to catch me in a perceived contradiction (“She said she can’t speak, but she repeats words like ‘cabbage’! Oh no, the world is ending, it couldn’t possibly be that repeating ‘cabbage’ over and over doesn’t constitute speech as we know it, can’t be used in conversation, doesn’t have anything to do with her thoughts, isn’t voluntary, and isn’t enough for a speech pathologist to consider a person ‘verbal’. Just the fact that she can repeat the word proves she wasn’t telling the truth when she said she couldn’t speak, and proves that she’s really choosing not to talk.”)

I’m hoping that none of those are your reasons. And if they’re not (especially if you’re an autistic person with language trouble yourself who can’t figure out how to rephrase your question), I’m sorry for bringing them up. It’s just after being put on a microscope by one too many people who don’t care what I actually have to say and who twist what I do say beyond recognition, I get sensitive to certain communication patterns. Keep in mind I have both receptive and expressive language problems even outside of speech, and language is very divorced from my experience of the world even when I’m at my most communicative. These can make communication a little overly interesting on its own, and can also mean I grab the wrong phrase from time to time.

Interesting discussion here. Kind of complicated.

I was also curious about the post above Donna’s last post. This one….

“Lots of technicalities to learn tks Amanda.

I read and listened to a Canada CBC.ca story today, very nice one, lots of articles and videos.

I saw this one CBC video with you http://www.cbc.ca/mrl3/23745/thenational/archive/autism-102708.wmv

From about 50 seconds on you comment about non-verbal. If I remember right. You say/type via voice synthesizer, you have the “motor capability of speech” but can’t convey meaning consistently via speech, and “it’s easier to type what I’m thinking than to say it with my mouth.” Does this mean that you prefer or choose to not speak?

Wonderful articles and cool video with you.”

So, yes, when I was a kid I wished like hell other people could understand me and see I was inteligent, sane, and I often gave up or equally later feared them knowing me through speech (because it would mean they’d then expect it all the time), so I think you need to understand the broad levels of relationships to speech.

There are people with CP who CAN speak with great effort but prefer not to all the time.
There are people with autism in the same situation.

I read and listened to a Canada CBC.ca story today, very nice one, lots of articles and videos.

I saw this one CBC video with you http://www.cbc.ca/mrl3/23745/thenational/archive/autism-102708.wmv

From about 50 seconds on you comment about non-verbal. If I remember right. You say/type via voice synthesizer, you have the “motor capability of speech” but can’t convey meaning consistently via speech, and “it’s easier to type what I’m thinking than to say it with my mouth.” Does this mean that you prefer or choose to not speak?

Wonderful articles and cool video with you.

Basically, a lot of the time I am unable to speak in any sense at all, and a lot of the time there are sounds that come out of my mouth, but they have nothing to do with what I’m thinking, nor are they all word-sounds of any kind. I don’t understand why imitating a microwave would still have me called “non-verbal” and imitating a speech sound would have me called “verbal”, when imitating the speech sound has no more communicative content than the microwave beeping does. My experience of not speaking at all, and making a lot of noises some of which include speech, is identical from the inside. There is nothing special and communicative about having random echolalia and vocal tics, they’re just noises my mouth makes independent of my thinking.

I am not too fond of the term ‘non-verbal’, it’s mostly a term others put on me. I’m not saying that it’s inaccurate because of something about me, I’m just not big on the term applied to anyone, because they could have receptive verbal skills, or written verbal skills, etc., and on the outside you can’t tell things like that. But ‘non-verbal’ and ‘functionally non-verbal’ are both things that other people have called me, including professionals, and as far as the definitions fit anyone, I do fit them. Even autistic people who occasionally utter a communicative phrase are often considered non-verbal because they can’t do so on demand or on purpose, and it is so rare. And autistic people who have only non-communicative echolalia are also considered non-verbal by most people. When I say I am non-speaking, I mean that as far as communication goes, speech is not the way I can do it.

Remember also that there are degrees of everything, things are not black and white. To be considered blind, a person does not have to see absolutely nothing ever, a person is considered blind if their sight falls below a certain threshold (and can also be considered blind if they are able to see but totally unable to understand things they see, even enough to step out of the way of something moving towards them). To be considered ‘non-verbal’ there is a similar threshold. It is not “Does not ever say and has not ever said a word of any kind of any reason,” but rather “Can use such-and-such amount of speech to communicate” ranging from no communicative speech to a small and often erratic amount of communicative speech, and this can be with or without non-communicative speech added in.

If they have SOME ability to do so, then they are partially functionally non-verbal.
So, before I was 9 I had lots of songs, stored strings, immediate and delayed echolalia and I could sometimes answer yes or no. But even my eyes or no was unreliable 50% of the time… I’d say yes and have no idea what I was answering or say no when I meant yes and my other speech was sometimes funny and entertaining, but mostly people felt I was muttering to myself in uninteligible, meaningless self-directed chatter and to a degree they were right, but to me, I was enjoying the associations with pattern, theme, feel or enjoying the sounds, sound patterns or mouth shapes and I felt that copying them brought me closer to being ‘like them’.

There is a massive difference between ability to make words and be able to say something reliably meaningful. I’ve worked with many people with autism who have huge amounts of delayed echolalic strings but are 90% or more unable to use this reliably for communication and the 10% which does work is often just by default (eventually something will HAPPEN to sound appropriate).

There a huge difference between being verbal at any level and being FUNCTIONALLY verbal at any level.
Those with speech but no functional verbal communication are just as communicatively disabled as those who are mute, in fact sometimes moreso as their unintelligible or seemingly meaningless speech leaves them considered brain damaged, disturbed or psychotic.

Donna Williams
http://www.donnawilliams.net