Speechless

I have been gearing up to write about Learning DIfficulties, but I can’t quite bring myself to start. I recently learnt that in addition to autism, my son has a chromosomal abnormality (microdeletion 16p11.2) which is strongly associated with Learning Difficulties. I know very very little about this huge topic. Is a learning difficulty (you see how I don’t even know whether or not to use capitals) simply anything at all that impacts on learning, in which case we all have them, so why worry? And stop making such a fuss and get on with it (is the possible implication). Or does it have to involve a low IQ, bearing in mind that IQ tests are not the only way to measure intelligence and that there are different kinds of intelligence. Is autism a learning difficulty? For most people it certainly impacts on learning. And yet once obstacles to learning are removed it is often possible for autistic people to learn exceptionally well. I think it is best to leave it there for now as I feel I am already getting into trouble.

There is learning and there is also teaching, but the two do not always go together. My son is three years old, and has not yet learned to speak. Does this mean we have to teach him? How do you teach someone to speak? Most parents do not have to worry about that at all. You read stories, sing songs, chat away to them and eventually they start speaking back to you. Hooray, job done, you are a good parent! To be honest, it seems to me that even if you don’t do those things, the speech would probably come along more or less when it should. Leo is non-verbal (actually I think technically he is classed as pre-verbal which sounds a bit better but is not), and I have received and put into practice a huge amount of advice from professionals, fellow autism parents, books and the internet. I can turn any activity into ‘ready steady….wait for him to look or make a sound…..go’. Likewise turn-taking: ‘Mummy’s turn…Leo’s turn’. Turn-taking is important because it helps with attention and without attention you don’t learn. Turn-taking is also the basis of conversation. I can see the logic in all the activities I have been advised to do, it all makes complete sense. I sing songs whenever possible (singing is sometimes easier than speaking for autistic people) ,sometimes I sing a commentary on what we are doing. He tends to look at me as if I am a bit bonkers when I do that. I listen for any noise that could be a word and repeat it back to him as if it is a word (bearing in mind there are barely any of these). I put things he wants out of the way so he has to ‘ask’ for them. I do things wrong deliberately to provoke a reaction, I pretend to forget things: ‘where are the spoons, I can’t remember’. I say what we are doing: ‘up the stairs, we are going up, up, up’. I slowed down my speech and used simple two word sentences, I repeated sounds in an exaggerated way: ‘p,p,p,pop the bubble’. Actually I have stopped doing these last two. The more I read the writings of non-verbal autistic adults the more I want to talk to him ‘normally’ and feel it is important to do so. To do otherwise always felt forced to me and I feel quite liberated in abandoning some of the techniques.

Leo has certainly done a lot of learning, in the last few months. Whether or not this is down to any of the teaching he has received is anyone’s guess. He can now imitate physical gestures very well (imitation is essential for learning speech); he finds it easier to pay attention than he did; he can respond to questions by pointing to or signing the answer. The impact on his speech has been almost zero. Even making a deliberate sound is still so hard for him. He can roar on request but that is it. He was just as unable to blow out the candles on his cake aged three as he was aged two. The books recommend using straws to blow through, or kazoos, or party blowers. The problem is that he just can’t do it. Like I can’t do the splits. Someone could demonstrate how to do the splits, and I would be able to see what they are doing. Just put your legs like this, it’s easy – see! I still would not be able to do the splits. I choose this as an example because aged about eleven this was my dearest wish, and I was highly motivated, but my body simply would not co-operate. I feel it must be a bit like this for Leo when people try to demonstrate the mechanics of speech to him. I also worry that constant repetition of things he cannot do is teaching him his failure to learn the skill, that the failure is somehow getting grooved into his brain. And that with each attempt the failure becomes part of him. Even if that is wrong, I feel we need something different, a new path.

I used to ‘hear’ him say a word or two sometimes. Yogurt, dog, dad, car, go, wow, down, out, book, cat, again… I think there are more. It is not just me. Several professionals have also told me excitedly they have heard a word or a word attempt. I don’t hear them any more, because it is too hard when he does not say them again. To make speech the be all and end all could easily end in heartbreak for both of us. At one point I had the attitude of; ‘he will speak and that is that’ but I have realised it is something I do not have control over. He may well speak at some point. He may not. I don’t know. What is certain is that he needs a way to communicate. A better way then the 20 or so signs he currently has. Better even than the pictures that we are compiling with the help of the Speech Therapist. He needs to express himself using words. This may be a voice output device, it may be typing. He will need to learn to read. That is an exciting thought. He already loves letters and knows the names and sounds, upper and lower case (without anyone teaching him as such). This is a very different path to speech but it could be just as wonderful. It suddenly seemed important to say this to him: ‘your words are stuck in your head Leo, but I know you can understand me.’ I got very clear sustained eye contact when I said this to him. He looked at me for a long time and then carefully touched his mouth. I will help him find a way to unstick his words, but we will not limit ourselves to speech alone. I have a feeling once his words are unstuck he will have a thing or two to teach us.

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