Behaviour is communication – especially when communication isn’t particularly easy. This is something we were taught from the earliest days – that if Archie’s behaviour became challenging it may be because he was trying to communicate something. I have repeated this for years, and sort of understood it, but at times, especially when we’re just surviving a challenging time, not really fully accepted.
For the last few years we’ve had few instances of challenging behaviours. Yes, like any teen Archie has had his moments, but they’ve been few and far between, and life has been good. Archie as been able to try lots of new activities and go to many new places, with us secure in the knowledge that he would remain calm and happy. Challenging behaviours are hard to deal with in privacy, a hundred times harder in public (I have been known to tell Joe to do a song and dance to entertain the audience we have attracted).
That all changed in July. A week before the school holidays Archie’s respite provision fell apart and he went from a planned three days a week to a big fat zero. I explained that respite was going to be shut over the summer (which he seemed fine with), then provided no further information. I did not specify what would happen in September because I did not know (I still don’t) and anyway we were focussing on the holidays. This was a mistake – my first of many.
The holidays were hell. Archie’s anxiety spiralled to levels I have never seen before, and with that came pretty ferocious meltdowns. I began to try to manage the behaviour, so I’d see the anxiety spiralling and would try and stop it, or would steel myself for the explosion that I knew would follow. It was pretty difficult for Joe and Louis as well, the meltdowns are frightening for them to witness and we had to be careful where we went. The refrain for the summer became ‘don’t try anything too ambitious’, which was a shame because we’d been terribly ambitious last summer and had had a ball.
I was so busy managing the behaviours, I forgot to consider that Archie might be trying to communicate with me. I saw the anxiety was overwhelming and believed it was coming from nowhere – the best explanation I could come up with was that it was as a result memories. Then two days before Archie was due to return to school he had another meltdown and shouted ‘diyant dai diyant dai’. This means ‘different day’ and he had said it a lot over the summer, both when I could see anxiety spiralling and during meltdowns. I had understood the words, but not his meaning. When, for example he said ‘diyant dai’ on a cliff path outside Belfast, I thought he had meant we were going to the north coast on a different day and had explained this to him (at which point he’d exploded in anger and frustration). Finally, seven weeks later, the penny dropped. He’d often used ‘diyant dai’ to refer to respite. He was asking what was happening about respite in September. I explained that he would be at home on Thursday and at home on Saturday (the two potential respite days), he instantly stopped trashing his room and there was silence. Utter silence. This had all taken place during (my) dinner and so I finished eating, then went up to him – to find him happy, smiley and very much in need of a cuddle. Seven weeks he had spent trying to get me to answer his simple question. Seven weeks.
Today I spotted anxiety soaring and a few shouts followed. I thought back to the previous sentence and realised Archie might have misunderstood and thought I wasn’t taking him out today. Rather than managing the behaviour (giving space, talking calmly, providing food, getting ready to step back,) we had a discussion, a back and forth conversation. This was indeed what was worrying him. We soon established he wanted to take the dog out, to the moors, with me, in my car. We did this, climbed a tor and enjoyed the view (see photo). Peace.
It’s been a very challenging seven weeks and it’s taught me a lot – I just wish I hadn’t been quite such a slow learner.
This really speaks to me – sometimes I really miss the point – but when you’re in the forest it’s sometimes just too difficult to tell the wood from the trees.
Absolutely, because the instances became so common, I saw them as behaviours, rather than increasingly desperate attempts to communicate. My bad as my middle son would say, but boy when I finally understood. The silence that followed my answer to Archie’s question said everything.
This resonates so much with us too. Henry’s anxiety over the summer decreased markedly when we started to give him a picture to hold in the car of exactly where we were going. A generic ‘seaside’ picture isn’t enough – he needs to know we are going to Charmouth. A visit to much loved Grandpa led to pacing and head-slapping – until I thought to tell him that we were going home at the end of the evening, and not sleeping there as we had the previous time. He hadn’t minded sleeping there – he just wanted to know what was happening. He has coped so much better with the return to school this week than I expected – but his teacher and TA are providing symbols for everything and he constantly carries a ‘now’ and ‘next’ card with him, so at least if everything is new, he still knows what to expect.
Great post Chris – really very powerful.
Thanks I’m still processing it all really. I think his explosions were so huge and scary and physical I began to think of them as ‘behaviours’. I understood they meant something was wrong, but I forgot that they might be a way of trying to tell me something. Since treating them as communication I have altered the way I respond completely, so rather than stepping back and telling him what to do e.g. ‘sit down’, I’ve leaned forwards so he can sniff my forehead and opened a conversation, giving him options and explaining what his brothers are doing. This calms him far more than any managing of behaviours has achieved.
Poor Archie, 7 weeks he’s been worrying about it all.
Always, communication is key. I’m so glad (for you both!) that you got it all sorted out! You’ve shown I think? that Archie can write letters; has he been able to work on expressing himself through handwriting? Has he given typing another go? I think once one begins learning to communicate, the desire to fully express oneself becomes more and more intense.
We have huge problems with any expression at the moment (including via the talker). I think because I tried to talk about the respite issues using the talker, now he has an emotional reaction to it. It’s a blog post for another day maybe, and something I am still trying to untangle. He had the language/capabilities to ask the question he wanted answered (using the talker) but for whatever reason couldn’t. Talking about difficult (emotionally) things is still …. difficult I guess and seems to affect his willingness to communicate generally.
Literacy *is*coming on, it’s not communicative, but it’s a first step. He’s still very keen to talk as well, and there’s talk at school about looking at getting some extra help with that – I think some words would really boost his confidence.
Oh yes, strong emotions make communication difficult (as it does for everyone). Syd generally needs more support to express herself if she’s upset or excited. Perhaps if you used the talker for mundane communication (ie, yes/no answers) for a while he won’t build up an aversion to the device? He’s come so far, don’t despair. You’ll get through this 😉
The talker is being used just to ask for sweets at the moment – it’s a big step backwards in terms of communication. He signs yes/no really well and it forms a big part of conversation (too much) but I don’t think we’ll move on until respite is properly sorted once and for all (whatever decision is made – it just needs a bloody decision! – out of my hands unfortunately). Am replying up here as I can’t reply to your last comment!
This is all familiar for me too, particularly what Sue’s said. Recently my parents moved house. We’ve been doing Intensive Interaction for about 4 years so we are used to seeing behaviours as communication but this experience has proved that we just don’t give him enough specific information. He has been repeatedly shouting “Same house!” whenever we mention the move. We assumed he didn’t want them to move, whereas, in fact, he was worried about some of the details of the move. When I took time to sit down and try to “converse” (he’s verbal but only just starting to be conversational) I realised he was worried about the following ….. (a) he thought they meant the whole house was moving (moving house) and he knew that wasn’t possible. I was able to explain what it actually meant. (b) he was worried that he would still visit the empty house once they were gone and he wouldn’t see them again. (c) they would leave all his stuff behind in the old house and the new house wouldn’t have anything nice for him to do.
All sorted now that I’ve taken the time to explain – he slept there for the first time the other day with no problem at all!
I think I need to do some II tbh.
Glad the first night went well!
You know, it really breaks my heart that our kids are unable to communicate in a way in which we can understand them easily…. or that we are unable to decipher what they are trying to tell us. I am sorry that it was a challenging time for you all.
But there IS a way! a number of ways, for our kids to be able to communicate and express their thoughts completely and beautifully! Many many autistic people the world over, young and old alike, are typing to communicate which they learned through methods such as the Rapid Prompting Method and Facilitated Communication. There is no reason for anyone to be robbed of their right to express themselves.
With respect, we have been on this journey for over 15 years. I know all about the different communication methods and my son has been offered every opportunity to ensure that he can communicate. He also has a variety of devices that he uses to the best of his ability. We are doing the best that we can and more……
to: Bright Side of Life – my comments were not meant to reflect on your knowledge or parenting. I’m sure you ARE doing your best. But I want parents to know that there IS a means to teach those who are unable to speak how to type or spell using a letterboard so that they can fully express themselves. My daughter is 21 now, she’s been spelling/typing for 11 years. We know many others who also communicate this way, and have attended numerous conferences having to do with this very important matter. It takes time and practice, but it can be accomplished by even the most severely impacted. My intention is not to criticize but to give hope and inspiration. All the best, Lisa.
Yep – the thing that struck me about the issue Archie had over the summer was that he *had* the tools to communicate, to ask his question. It’s something he has asked many many times before – easily. Using the talker he could easily have asked me whether he was going to respite in the summer. He could alternatively have grabbed some symbols/used google maps to ask me. Well I say could, but obviously although he had the skills he *couldn’t*. He was unable for whatever reason to access & use the skills he has to ask a simple question. I suspect because respite is, for various reasons, too difficult for him to even think about at the moment. So the communication skills he has couldn’t be used. I find this again & again with autism & it must be incredibly frustrating for him. 😦
(Sorry *after* the summer). If he sees the talker now though he usually screams & runs away (that’s a whole other post though – we’ve gone well and truly backwards). He types for literacy but he won’t use it communicatively. The reason his communication was so good last year was because he *wanted* to use the talker – it became part of him. Now it leads to screaming & running away it’s not so useful – and even though I’m frustrated for him – as he has those skills & can use it beautifully & easily – it cannot be forced.
BUT – he’s currently living intensive interaction/Floortime type messarounds. He drags me off to do those & I have trouble ending sessions (eg because it’s eleven o clock at night & I need to sleep). He wants to communicate still – but it seems for the moment an awful lot of methods he can use are firmly off the agenda.
For sure, Lisa. No worries. Please do share your blog. Thank you.
I don’t blog We do have a rusty old website (link posted) and my daughter has been written about on other websites such as Awe in Autism. She published a book of poetry. Just recently though we’ve found that the same principles that support her typing have also now allowed her to play piano (she’s taking lessons from a regular piano teacher) and also to paint – which she’s showing talent in much to our surprise! The world is FULL of possibility for our kids! http://aut2communicate.com/Sydneys_Story.html