Wednesday 9 February 2011

Resilience and autism

Yesterday I received some feedback from our RDI Consultant on a recent video clip I’d sent.  I had been covering the same co-regulation objective – but this time our Consultant had asked me to set things up so that Philip could lead the activity.  The purpose of this was to check that Philip was still monitoring for co-regulation so that we could both achieve our joint goal.
Not-Nigella and Not-Jamie are having a bit of a run on pizza making at the moment, so Philip was leading me through preparing the pizza base and then putting the toppings on.  If he was taking responsibility to ensure that our actions were co-ordinated, he would need to monitor what I was doing and to make sure that I was doing the right thing, in the right sequence.
In everyday life, we need to be able co-regulate with our partners all the time – from being an effective team player at work to having a conversation about the weather with a stranger at a bus stop.  We monitor what the other person is saying and adjust our response depending on what we think fits within the framework (to get towards a joint goal) or what we think the other person wants to hear (we might be more mindful about what we are saying if it’s a boss at work we’re having the conversation with, for example).
In order to test whether Philip was co-regulating, I would need to disconnect from the activity.  If he noticed this and took actions to get me back on track, then he was taking co-regulatory responsibility for our interaction.  He did indeed bring me back on track when I disconnected – he did a really good job of leading and monitoring.
However, what blew me away was how well he coped when things went wrong.  Gluten free pizza dough (or g/f pastry for that matter) is a tricky little blighter.  It requires that you pay lots of attention to flouring the dough to prevent it from gooping up.  You also have to know its limits i.e., when to stop rolling, so that it doesn’t fall apart.  Gooping up and falling apart happens much quicker with g/f dough than it does with dough containing gluten.  Nigella and Jamie would no doubt have some words of wisdom for us on this but as we haven’t got them on speed dial, we just have to do the best we can.
For a long time, Philip has had difficulty when something didn’t go according to his expectations or if he ‘failed’ in an activity.  This has led to a lot of frustration for him and has also badly affected his self-esteem and self-confidence.  It’s part and parcel of the rigid thinking that is at the heart of autism – not being able to take what RDI calls a ‘good enough’ approach (so that everything has to work out perfectly first time) and lacking in resilience, which helps us to bounce back from set backs.
As a parent, it’s really difficult to watch your young child struggle with lack of resilience, listening to them calling themselves ‘rubbish’; ‘not worth anything’; ‘a waste of space’ and so on.  Worse still is that no amount of reassurance helps to offset these feelings as it would with a typically developing child who would recover quite quickly with commiseration, hugs, encouragement, and praise for trying.
Recently emotional health and wellbeing, especially of children and young people, has been moved up the UK government’s agenda….so much so that it’s actually included in the national indicator set that is used by government to assess the effectiveness of local authorities (it’s National Indicator 50, in case you need to quote it at anyone from your local Children’s Trust). 
Government has issued guidance to local authorities called ‘Promoting the Emotional Health of Children and Young People’.  The document says ‘being emotionally healthy does not mean being happy all the time but it does mean having the resilience to face the changes that occur in life’.
It also states ‘The development of emotional health starts before a child is born, and the first two years of life are a critical period for laying the foundations for emotional health throughout childhood and into adult life, in particular through the parent/child relationship.’
Ironic isn’t it that development of emotional health through the parent/child relationship in the early years is recognised as crucial in government guidance to local authorities, given what we know about autism?  We know that it is the parent/child relationship (the 'guided participation' relationship) that breaks down in autism and we know that the development of resilience is impaired in children with autism.  Yet we don’t fund early intervention for children with autism, who are arguably amongst the most vulnerable to poor emotional health due to lack of resilience.
Someone once said to me, if you’ve got a child with autism, you’ll find you need to use the BODY method: ‘bugger off and do it yourself’ (sorry if anyone is offended by the B word – my defence is that it is a direct quote from elsewhere).
So anyway, here is my clip capturing Philip’s growing emotional resilience.

Here is the text that breaks down what we are doing.
0.07  P notices my disconnect and gestures me to copy him

1.03  I disconnect again.  P references me, notices and encourages me

1.16 - 1.30  This is a great bit where he gestures me to 'hold on' whilst he shows me we need to make the dough in the shape of a circle, all non-verbally

I am now really anxious because I am predicting what is going to happen with the dough and am worried about him getting frustrated and negative....but I try to make like the Queen and keep calm and carry on.

1.39  P's dough gets holes in it and he says 'I think its time I gave up'...but he continues to try to roll it out

2.07  The dough gets more holes in it and P is becoming increasingly frustrated

2.11  I explain how Jonathan (one of the teaching staff - our 'Not-Nigella' at school) managed the dough (by making the pizza smaller)

2.15  P expresses his dismay at having broken his already and I respond that we can start again

2.19  I model starting again and he is able to squash up his dough without getting upset that it didn’t work out

2.31  P is being negative but I ignore this and carry on

2.35  As a resolution to the smallness of the ball, I gesture at the leftover dough.  P nods in agreement - he is able to accept a suggestion for a possible solution and we start again.
Now the amazing thing for us here is that we are able to start again.  In previous activities over the years, if something went wrong, like holes in the pizza dough, Philip would have gone into a downward negative spiral and refused to carry on with the activity.  
This feeling of ‘failure’ (even though he wasn’t at fault) would have pervaded his mood for some time and made it difficult to do anything else.  You can understand my anxiety at 1.30 when I can predict what’s going to happen to the dough…..because it wasn’t just about the dough, it was about his self confidence and self esteem and his ability to be an active participant in family activities.  You can imagine how this has played itself out in family games in the past L. It is soul destroying to watch your child go through that again, and again, and again……..
So hopefully you can excuse me for getting a little emotional about this piece of footage!  What has made the difference here is the bank of episodic memories we have been able to help Philip build up.  Remember we discussed episodic memory in ‘Memories of competence’ (Jan 16)?  I said that ‘We cope with setbacks and challenges and learn from mistakes by drawing on our episodic memory of experiences that are ‘similar but different’ to the current situation, to help us decide what to do. Research shows that this special kind of memory is impaired in autism. ‘
In various RDI activities and in everyday situations that have cropped up spontaneously over the last couple of years, Dixon and I have been spotlighting our own mistakes and resolutions, as well as enabling Philip to be in situations where he could competently make the repair to either his or our small mistake.  These memories of his own competence in overcoming a challenge are what are enabling him now to bounce back from the pizza dough difficulty.
Later on when we were talking about it, he even made a joke about it, saying ‘Doh!  That pizza base was a real nuisance!’

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