Conferences....and Blue Men

Been running around like a headless chicken this week.  Partly sorting out stuff for the Bright Futures conference in April and partly getting a display stand ready to take to the National Autistic Society conference next week.  Apparently they’re expecting over 550 delegates so am hoping to get lots of footfall past our stand.  Am getting ready to talk my leg off about developmental interventions and the ‘remediation not compensation’ message and hopefully recruit some delegates for our conference.

The highlight of the NAS conference for me will be a breakfast briefing by Tony Charman, who will be talking about ‘Developing a research partnership between schools and scientists.’  I’ve got a research proposal to evaluate the provision at our school all ready to go.  My application to fund the research is almost finished and Tony has kindly agreed to act as one of the supporting researchers.

Tony is head of the Centre for Research in Autism Education (CRAE) - a partnership between the Institute of Education (IOE) and Ambitious about Autism (formerly TreeHouse).

CRAE was established in 2009 to improve the research evidence available to support effective intervention for children and young people with autism. The partnership works to produce research that will influence health and education policy and practice in the UK and internationally.

CRAE’s work includes:

• Gathering evidence on the effectiveness of the current best practice teaching methods for children with autism
• Carrying out research on barriers to learning and how to remove them
• Investigating how autism education practice can be evaluated more effectively
• Developing specialist training courses for people involved in autism education
• Devising new programmes for qualified teachers to gain a recognised specialism in autism

So…..autism education….barriers to learning…..partnerships…..you can see why I will be getting out of bed early J

On the other hand, there are a couple of presentations/workshops that I will have to actively avoid, for fear of turning into the Tasmanian Devil in frustration at their subject matter.  One is a presentation on autism interventions entitled ‘Don’t just do something – stand there!’ Words fail me……….

At the end of day 1, there is an evening debate entitled “Advances in brain imaging technology will significantly enhance the lives of people with autism” which should be interesting.

I find the focus on brains in autism a tad scary sometimes – that is, if the focus is on the brain to the exclusion of the mind, which, sadly, it often is.

 I’ve recently tried to get back into Daniel Siegel’s book ‘The Developing Mind’.  I can only hack it for so long before my brain explodes – I find it very complex and it really challenges my mental capacity!  What it has done for me though is to highlight how very intertwined our emotions are with our thinking and with the creation and development of our minds.  Emotion is what motivates us to act – ‘e….motion’. 

So, let us delve briefly into Daniel’s book - hold onto your hats (and brains and minds)………….

He writes about how an initial stimulus evokes a state of alertness…our brain goes ‘Something important is happening….pay attention!’  Then the value systems of the brain kick in to appraise the stimulus and we start to feel a sense of ‘this is good’ or ‘this is bad’…...basic emotions.  We can see from this that emotions are the beginning of how the mind creates meaning.

He discusses how non-verbal communication is essentially the vehicle for expressing emotions.  So we can see again that when someone has difficulty ‘reading’ the emotional messages in non-verbal communication, they will miss out on crucial meaning in a social exchange.

Dr Siegel has a new book out called ‘Mindsight’.  In it, he discusses how we can actually change our brain circuitry by becoming mindful.  By mindful he means being aware of our internal states, thinking and emotions.  Just for fun, here is Daniel talking about his book…..with a little help from the Blue Man Group.

Enjoy.

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!’

The communicative dance: co-regulation

Our training session at school this week focused on co-regulation, as this is the first step in the communicative dance and the basis for all human communication.

If our pupils can’t co-regulate then they are going to have serious difficulties with social interaction and coping with uncertainty.

In order to be able to communicate verbally, children have to understand that there is a to and fro or a back and forth in an interaction.  This to and fro begins at birth, as soon as parents start to interact with their babies.  Parents interact with simple language but more importantly initially, with non-verbal communication – facial expression, gesture, prosody, touch, closeness.  This interaction is the start of a lifelong dance.

Why the analogy of a dance?  Well, whatever dance you are doing, be it the quick step, the jive, the paso doble or the waltz, what you are doing is establishing a rhythm with your partner whilst working towards a common goal.  Your objective, whether you are going to win the dance contest or just dancing for fun, is to stay together, to make sure that when your partner makes a move, you execute the corresponding move that enables your dance to be fluid.

A dance is about one partner taking an action and the other partner’s action being contingent on, but not controlled by, that action.

When we dance together, we co-regulate with our partner’s movements.  To do this, we have to have an awareness of what the other partner is doing – we have to monitor their actions to ensure our next action is going to fit in. 

When we have a conversation with someone else, we follow a similar model.   It is a to and fro interaction where the response is contingent on (but not controlled by) the initial comment.  Subsequent comments are contingent on the preceding comment…and so on.

Another analogy that has helped me to understand what co-regulation ‘looks like’ is that of rolling a ball back and forth.  There is a joint objective – ‘keep the ball in play’ – and each of the participants has to monitor the actions of the other in order to be ready to receive or send the ball.  If the ball accidentally goes off track, one of the participants will retrieve it – thus repairing the breakdown in the interaction.  Again, think of this as a metaphor for a conversation.  If the conversation goes off track (e.g. a disagreement starts or there is a misunderstanding) then participants (when interacting in a constructive manner) will try to find common ground in order to address the disagreement or misunderstanding, thus repairing the breakdown.

Babies start to learn about co-regulation right from birth: the baby cries, the parent responds with a soothing touch and/or gentle rocking.  Typically developing children master co-regulation at about 9 months of age, and this gives them the foundation for self-regulation. 

Remember the clip with the typically developing child, the Down’s Syndrome child and the child with autism?  Each of these children had a very distinct response to the emotional reaction of the adult when the robot was introduced.  The Down’s child and the typically developing child read the expression of fear on the adult’s face, determined that the robot was a threat and acted accordingly.   If the adults had remained calm in that situation, the same children would likely have started to explore and play with the robot.  This is because as babies and young children we are able to use the emotional reaction embodied in the non-verbal communication of adults to reassure ourselves or alert us to danger.  We are borrowing the thinking or emotional reaction of another to soothe/alert ourselves.

I’ll show you what I mean by using another clip that I used in a previous blogpost.

The typical child’s response to the upset of the tower tumbling at the wrong time is to echo the ‘uh oh’ of her father and to give it another try.  In contrast, the child with autism is not able to use the emotional response of the adult to help himself – in fact, he is completely oblivious to the adult’s reaction and possibly to the presence of the adult.  He continues to be upset and is unable to repair the tower.

There are myriads of activities that have a co-regulatory element because co-regulation is the basis of all human communication.  In school training today, I asked the staff to come up with some activities that could be used to work on the objective of establishing co-regulation.

Activities included making a pizza and planting pot plants together.  In fact, if you are doing anything with someone else, there will be a co-regulatory element to it.  When we first started using RDI, we spent a lot of time walking across a room together.  Philip would need to look to me to monitor the pace of my movement across the room.  He may also need to monitor how I was walking – large steps, small steps, backwards, forwards, sideways.  We began by holding hands so that he also had the sensory input of staying together and doing something jointly.  Once he understood the pattern of what we were doing, I was able to remove the scaffold of the hand hold.

 When the child begins to co-regulate, you can start to add variations.  Variations keep the child’s interest but they also give a communicative message of “We are walking together but now we are doing it in different ways.  We are within the same overall pattern (walking from A to B) but we are able to do it differently.  There is change and uncertainty in this (remember – difficulties coping with change and uncertainty are at the heart of autism)….but actually that’s what makes it fun!”

So I might stop part way through my walking.  If Philip was monitoring in order to co-regulate with me, he would stop too.  Then I might walk backwards.  Then I might walk like an ape and add some sounds in too (I’m glad I don’t have to share video footage of this!!).  Or we would fall into bean bags at the end of the walk.  You can do all sorts of fun stuff with variations….and the message your child is coming to understand is “I am managing change and uncertainty.  Change and uncertainty are fun!”

Human beings seem to be hardwired to want to make discoveries and to master new information and challenges.  This quest for novel information and input is what drives child development in the early years.  Parents and caregivers instinctively respond to this by making sure that the potential discoveries are at the right level for the child.

What RDI does for children with autism is to ensure that the level of challenge (the change and uncertainty) is just within the child’s zone of competence.  If the challenge is too big, the child is likely to withdraw or become anxious and upset.  As the child becomes more competent with variations, the challenges can be increased.

Here is a clip of some simple co-regulatory activity.

This clip takes a little while to warm up as the pair are getting settled, so bear with it.  The good stuff starts around 1 min 45 secs when Mum says ‘Uh oh!’ as the child starts to put food in his mouth.  Her objective is to enable the child to co-regulate the putting of food into his mouth, so she is letting him know with the ‘uh oh’ that there is a problem (i.e., they are not doing it together).

The boy references Mum as soon as she says ‘Uh oh’ and he co-regulates with her from there onwards.

This family are not speaking English – but the language isn’t important, it’s the non-verbal communication that tells you what’s going on.

You’ll notice that Mum introduces lots of simple variations – she uses different prosody (communicative noises), different pacing (faster, slower), and different ways of picking up the food (e.g. the ‘grabber hand’ at 2.41).

At 3.44 he eats out of synch and Mum says ‘Uh oh’ again.  Her son immediately references her and repairs his mistake by taking the food out of his mouth and holding it in the middle of the table, like Mum.

The clip is about 10 mins long but I had seen enough by 4 mins to show me how Mum was enabling her child to co-regulate.

Again, we see here that we develop the first steps for being able to understand and relate to our world by building a relationship with our parents or carers.