For the first ten years of Archie’s life I probably made pretty much every decision for him. Until he was about 5 he had really no concept of having a choice and would treat every suggestion as a command. To complicate matters further it took until he was about 10 before he had a functional yes and no. By this I mean it took that long until he had a way to communicate yes and no and an understanding of the concept of yes and no, in other words an understanding of what yes and no actually means. It’s hard to imagine not understanding the words, but they’re abstract and for a long time Archie didn’t. The upshot of this was that we couldn’t have simple ‘do you want to go to the park’ type conversations because Archie had no way of saying yes, or indeed no.
Gradually we developed a simple way of offering choices; ‘would you like this or this – using a picture or symbol to offer the choice’. If Archie wanted neither option then we would start a guessing game. It was slow, frustrating and often resulted in no resolution. Once an understanding of yes and no developed it made running through options easier but we were still limited to me having to think of various options while hoping to stumble on an acceptable one. Archie’s choices were limited to my imagination and he struggled to communicate a choice without me first offering it.
The talker has made all this much easier, and this improved communication has resulted in less frustration and Archie being able to have more agency over his life. We had a fine example of this this week. I booked a surf for today as soon as I realised that Archie had a non-pupil day at school. It seemed ideal, his brothers would be at school and it would occupy the first day of the half term. Except last weekend he went down with a really grotty cold. He’s been insisting on going to school but has been coughing and spluttering all week and really didn’t seem to be 100% fit to be dunked in the sea in February. In the past this would have been problematic. If I had said something was happening it had to happen, or a massive meltdown would result. There was no way to negotiate an alternative or even explore what Archie actually wanted to happen. I had to try and guess. And, as might be expected, frequently guessed wrong. The talker has made all this easy. By Wednesday when he was still spluttering everywhere I reminded him he was booked in to surf on Friday, but asked him whether he wanted to go given his cold. Different day came the reply. I was able to check ‘do you want to surf on Friday?’ no. So I asked when. Sunday. Okay Sunday, but he clarified further. Downham Saturday surfing Sunday. He wants to surf the Sunday after he’s been to respite on the Saturday. And all decided without a meltdown or me having to tie myself in knots trying to guess what he might want to happen. The day pinpointed all I have to do now is keep an eye on the surf forecast. If it’s forecast to be flat we’ll use the talker to renegotiate.
This is great! We struggle with time and the whole issue seems to have been made so much easier by the talker. I’m also very impressed by Archie’s ability to put off a much-loved experience because of not feeling well – that’s really quite complex isn’t it? And mature!
Henry still only says yes and no when prompted but understands the concept. For example, if I said ‘do you want a banana?’ he’d say ‘banana’ for ‘yes’ and ‘stop stop’ for ‘no’. If I then say ” Henry, if I say ‘do you want a banana?’ and you want one, you say…?” , he’ll say ‘yes’ (or vice versa). It’s a huge rigmarole and has made me realise how difficult ‘yes/no’ are to summon up, speechwise. Your post has made me wonder whether I should just programme one of the speech apps on the iPad with a simple ‘yes’ and ‘no’ button – or even use two talking tins with symbols on. I’m pretty certain no-one else is going to bother to go through the whole prompting malarkey when asking him something!
Funnily enough his latest SLT care plan is focused on choices and it’s working very well, from a speech point of view. Of course, where it fails is exactly as you write here – what if I haven’t come up with the right pair of choices?
Choices are always so difficult. I sometimes find myself presenting ludicrous options while I battle to try and think of choices he might actually want. This is much reduced with the instant access to a large vocabulary that the talker provides.
I am laughing at your ‘stop stop’ and long winded way of getting to a yes or no. We have had a few of those elaborate ways to communicate something simple in the past. Usually Archie communicates yes (wide open mouth “ah”) and no (sad look ‘nuh’) verbally because it can be three hits to bring it up on the talker – although I can intervene and set it up to be one hit if we really need to concentrate on the answer.
I got so excited reading that! It may be a small accomplishment for some, but for those of us with children on the spectrum, that is huge. My son had the same difficulties with decision making and defining ‘yes’ and ‘no’. It was very frustrating for him and I both. But, once we got past that barrier, I’ve seen him blossom more than ever before. Great post. Thanks for sharing.
I think understanding yes and no is something we take for granted. In fact I don’t think I realised my son didn’t understand yes and no until he was about 7 and I tested him (on advice). I would hold up (for example) a picture of a dog and say ‘is this a train? yes or no’ – responses were entirely random. Once yes and no developed it made such a huge difference to communication. Of course I don’t even remember a time when my younger boys didn’t understand yes and no.
You are right. The most simple of things are completely taken for granted. But, when we have a child with any type of learning disability, we learn very quickly thasomething as small as saying “Hi” to someone is an enormous milestone.
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Hi Chris. I used to work with Archie at school and remember him fondly. It’s great to see how much he has developed his communication. I can’t believe how grown up he looks now.
I remember you (and I’m sure Archie does as well, he never forgets anyone – or their car). He’s the same height as me now 🙂
I first worked with Archie in John’s class. I think it must have been not long after he started at the school. Although the longest was when he was with Helga.I still miss working with those boys. It was one of the most rewarding and enjoyable times of my career. I think I remember you coming in and doing some filming, is that right?
Yes that’s right – and that filming has ended up as a (very academic, not very readable) chapter in a book about kids w/autism joking. He’s back with Helga now – (the way in which the classes are organised have changed) – they understand each other well 🙂
I always thought Helga was brilliant wth them. She always seemed to get the best from the boys as they responded to her really well.
I have just showed your blog to a work colleague of mine who has a son with Autism. She is going to contact the surf school for her son.
Oh fab – Discovery are brilliant. There’s a free surf event in July as well; Breaking the Barrier. The Discovery surf coaches run the Bigbury even and it’s a chance to try it out – have a bit of a taster – for free. Always a great atmosphere on the beach as well http://www.lifeworks-uk.org/bbeventdetails.html