Sunday 29 January 2012

Why parent emotional regulation is key to remediating autism

Righto.  There are a few clips in this blogpost – all of the same activity, interspersed with some explanatory narrative that helps to tell the story of our work on emotional regulation – both mine and Philip’s.

We are making kebabs.The first clip from the activity is where Philip withdraws. 

Prior to this clip, we had been going for about 6 mins without really getting anything done.  At the beginning of the clip, I set some limits around scripting (because it’s becoming a distraction and interfering with our interaction) and then P shares something daft that he and Louis have been doing together that they've been having fun with.  I allow this and share around it, as it isn’t scripting, he is sharing experience.  What’s also nice about this is that he is looking for my non-verbal emotional reaction to the daftness. 

At 0:59 I set a limit around silly name calling by saying ‘we’re not having any silly name calling right now’ and he responds ‘after’. He is managing to inhibit himself here and I spotlight his competence by repeating the word.

At 1 min 14, P withdraws.  He has just come back from the loo, where he washed his hands and got some soap in a cut on his finger that is now irritating him.

I immediately feel a mixture of disappointment, frustration and anger at Philip.  Those of you who have been in this situation will recognise how I was feeling.  You have built yourself up to have a positive, enjoyable interaction (that includes remediation) and it’s all gone belly up L

You get that sinking feeling in the pit of your stomach as you think to yourself ‘Oh blast it, we’re not going to be able to do this activity’ and ‘Oh why can’t he just do it!!’ Very un-RDI like feelings…….but you can’t help your initial emotional response.  Fortunately, about 2 seconds later, the good old pre-frontal cortex kicks in and boots out the amygdala’s initial negative emotional response. 

I quickly get a handle on my feelings by thinking that I will just give it some time and hope that he will re-engage.  The pre-frontal cortex reminds me what I know about his condition - that he can’t help his response because he hasn’t yet got the thinking tools to emotionally regulate in the moment. 

I can be quite fiery myself (it’s the red hair gene) and it has taken a lot of work for me to become more mindful about my feelings so that I can manage them more positively.  The added bonus is that this has paid off in other areas of my life (RDI – my own personal Psychologist!!)

I leave P for 3 mins and then go to the room he has withdrawn to.  I explain that I’m sorry his finger is hurting, suggest that if he rinses it under water it might help, tell him I am going to get on with the cooking and say that I hope he will be able to return once he feels better.  He tries to engage me in a negative discussion (spiralling about how things always go wrong) but I reiterate that I’m going back to the cooking and walk off. 

I have previously had a tendency to be sucked into the negative spiralling by trying to rationalise with Philip (wanting to ‘fix’ things for him and to counter his negativity).  I have learned the hard way that this is counterproductive and actually just makes things worse.

It’s hard just to put a lid on it and walk off like that, because my natural instinct is to want to help him to feel better and I kinda feel mean leaving him in that dysregulated state.  However, I am determined to put the plan that I have discussed with my RDI Consultant into action and to give him space to regulate himself.

It takes him a further 10 mins to regulate himself enough to return to the cooking but he does regulate himself without my help.  Hooray!!  During this time I am doing some preparatory cooking work, as time is getting on and school will be closing in about half an hour.

This next clip is of 4 mins immediately after he re-engages

You can see at this point, he is still locked into his negativity.  During this time I go at a slow pace. 

At 0.52 I scaffold by prompting him for where to look for the peppercorns.

1.23 I take the lid off to begin with - another scaffold as I'm thinking that this may be too much of a challenge for him at this point i.e. after the previous frustration, this new challenge will frustrate him sufficiently to be the straw that broke the camel’s back.

At 2.48 I scaffold by taking the tablespoons out of the picture and looking again at the teaspoon measures.  At 2.58  I can see he has the idea to use 2 x half tspn and he does select the half tspn.  My Consultant commented that my pacing and pausing here were allowing some great problem solving.

We have a bit of a non-verbal miscommunication about how to put the tspn in the jar then at 3.23 his frustration is stopping him from thinking through what he might do here.  I pause and at 3.32 he says he's ready to give up so at 3.34 I come in with the scaffold of removing the spoon from the ring to make it easier to maneuver it.

At 3.42 he speaks disrespectfully to me (this is borne of his frustration with the measuring spoon).  The tone of my response lets him know he has overstepped the mark.   I would have counted any more of this (one of our family our behaviour management tools is 1-2-3 Magic) and I think he knows that.

This clip is where I model for Philip how to take the top off the cloves.

0.02 P references me

0.11 I take the opportunity to model for Philip how to get the lid off

0.29 He pulls the lid off and spills the cloves - I say not to worry.  My Consultant fed back that my calmness around this helps Philip tremendously.  Again – I am being mindful about my emotional response by not getting lost in the frustration of the spill.

0.43    We share a joke.

The final clip is where P does quite a bit of referencing around measuring the cumin and then I model again the grip that is needed in order to take the top off the spice.

0.06 P references me for info, I do thumbs up
0.08 P checks in, I nod
0.15 P checks in re having a heaped spoon, I respond with gesture and facial expression
0.18 A quick flick check in
0.20 I gesture to stop and he references me
0.22 He checks in again but I miss that one
0.58 I model again how to take the top off
1.18 I do it again with more pronounced and slower movements
1.22 He manages to do it and I celebrate his success with a 'yay!

So here we can see a prime example of how important it is for the parent guide to be in the right emotional ‘headspace’ – staying calm, going slow, not treating withdrawal as any kind of failure, being prepared to wait it out.  Self regulation develops from co-regulation: just as we do with our typical children, we parents need to scaffold it for our kids with developmental delay.

And by the way, the kebabs were delish JJ

Thursday 5 January 2012

Addendum to 'Ignition' post

Adding this insight by way of further explanation re the development of resilience - in particular, as it relates to Philip.  It’s so obvious that I totally overlooked it L  It wasn’t until a fellow NAS Councillor and I started to have a discussion about what we see in the clip in the previous blogpost that I realised I needed to clarify that Philip's resilience did not exist before we started using RDI to work on social and emotional development, and its taken us years of hard slog to get to where we are now with it.

I'm not kidding - it didn’t exist and was the source of many, many meltdowns (not just for him) as he experienced failure after failure (social and otherwise) and was not able to have another go at something.....even the smallest and (what would seem to typically developing people) most insignificant challenge.

That is why I am so fearful in the clip when I try to suggest that he makes do with me having lit the gas ring.

In years past he would not just have walked away from the whole activity as soon as he 'failed' at the first try lighting the ring, he would also have gone into a psychological downer on himself e.g. 'I'm rubbish...I'm useless....I can't do anything', often culminating in 'my life sucks' or 'I don’t want to be here any more'.

That is very hard for any parent to hear.  I hope people can appreciate why, for me, impairments in resilience are the curse of autism.

Tuesday 3 January 2012


Over the holidays I’ve been reading several different blogs and noticing two common themes.  The first is the number of parents who state ‘I wouldn’t change his autism for the world’ (or similar) and the second is once again the myth that if we ‘teach’ our kids with autism ‘social skills’ then everything will be ok.  You will remember I have written about this previously  It’s my most-read blogpost, with 716 views, so it must’ve struck a chord somewhere.

These two themes seem separate but in fact they’re cunningly interlinked.  Let’s explore……..

I have great difficulty understanding parents who say they wouldn’t change their child’s autism.  I don’t have difficulty accepting that they have a right not to change their child’s autism but I can’t get my head round their rationale for not changing it.  Maybe their experience of autism is very different to mine – clearly autism manifests itself differently in different children, but our family’s experience of it has been that it’s a very rough ride.  I won’t go into detail but suffice it to say that both me and Dixon are tough cookies with pretty robust resilience.  Fortunately we kinda complement each other in the resilience stakes – certain things that really bring me down don’t affect Dixon as badly and vice versa, so, either one of us is able to be strong for the other, or if we are both really low (and there have been 3 or 4 times over the years when we have been to that godforsaken place) then we eventually tend to work together jointly to find a way forward.  We have had to plumb the depths of our resilience over the years in order to deal with the impact of the condition, both externally (numerous fights over access to appropriate health care and educational provision) and internally (keeping our marriage strong and looking after the emotional wellbeing of our family).
There are many good things that have come out of having a child with autism.  It has taught me a great deal about other people; it has strengthened my resolve to fight for the rights of marginalised groups; it has introduced me to some of the most emotionally intelligent and creative people; it has introduced me to developmental psychology and child development (with which I am now obsessed), I have come to fully appreciate the courage of children and adults with disabilities in a way that I wouldn’t have if I hadn’t been directly involved and it has made me work on my own self-regulation and self-awareness.

Given all that – if I had the chance to wave a magic wand and take autism out of the equation, would I? 

Well.......all these positives pale into insignificance beside the impact that autism has had on Philip’s quality of life: difficulty making and maintaining friendships, social isolation, being on the verge of mental health problems (we definitely had our underpants on over our trousers bringing him back from the brink of that one).  So would I wave the magic wand?  In a heartbeat.  No question.

 I guess I don’t really subscribe to the ‘social model of disability’, at least, not when it comes to autism.  For some disabilities, yes, the social model fits.  But with autism, one of its most disabling aspects (in my experience) is low frustration tolerance coupled with very severely impaired resilience.  Frustration tolerance and resilience aren’t things that are social in origin (created externally) – they are intrinsic to the person…..something that grows throughout childhood and adolescence as part of social and emotional development. 

So – if impaired resilience is intrinsic to autism (and it follows that it must be, given what we know from research about impairments in episodic memory – the seat of development of resilience), then why wouldn’t you change someone’s autism?  Certainly for my boy, if we hadn’t worked on improving episodic memory and resilience, then I would feel as if I was condemning him to a life of low self-esteem and lifelong feelings of ‘failure’ and lack of competence.

Below is a 2 min clip of resilience-related Chocolate Brownie making in the Not Nigella Not Jamie kitchen.  You may notice that we have had a refurb - well, actually, we’ve moved house which is excellent on so many levels, one of them being that the way the kitchen is configured lends itself to better participation by the kids in NNNJ activities, plus easier camera position.

We got chef hats for Xmas (Philip’s idea) J Here I’m working with both boys in parallel i.e. each boy is making their own choc brownie and I am facilitating when necessary from behind the camera.  This in itself is a significant step forward – when remediating autism through RDI, working with more than one child (even a close, supportive NT sibling like Louis) is not recommended until the child with autism has mastered certain fundamental developmental steps.  Until those competencies are in place, the interaction can be too dynamically challenging – both for the child with autism and (certainly in my case) for the RDI parent.

In the clip, Philip is having trouble turning the gas ring on.  He is quite wary of the flame and doesn’t like the ignition.  Up to now, I’ve always been the one to ignite the gas ring.  He (wisely) elects to move his pan to the back of the hob (good problem management on his part).

He has several tries at lighting the ring.  For me, as his guide and his Mum, my knowledge of where he is psychologically with this gives me quite a challenge.  On the one hand, I want him to have a positive experience of mastering the ignition and managing the flame.  On the other, I am very anxious about what might happen if he is unsuccessful in igniting the ring.  I don’t want to overcompensate (undermining his independence and self-esteem), but neither do I want him to experience feelings of failure (which would also result in undermining his self-esteem).

You can see my hesitation about this both as he is trying to ignite the ring and when I model it for him and try to suggest that my lighting of the ring will suffice.  Philip, however, has a different idea and keeps saying ‘no, no, it has to work’ - by which I think he means that logically, having seen both me and Louis do it, he must be able to do it (good thinking on his part).

In the event, I decide to let him keep having a go.  My rationale for this is that if he is successful, I will be able to spotlight his competence and success, thus building his resilience by adding to his bank of episodic memories that he will use in the future when confronted with a similarly challenging situation.  Plan B is that if he gets too frustrated and gives up or the ring doesn’t ignite for whatever reason, I will model again how to do it whilst praising him for his persistence and reassuring him that he can do it.

Here is what happens:

Isn’t that great?  Here we can see that Philip is most definitely experiencing feelings of competence, as he turns to reference me and share his experience with me by celebrating his success (@ 1 min 55).  And Louis chimes in too, with his ‘Philip did it!’ which is lovely and very typically supportive of Louis.

How can you ‘teach’ someone to have the kind of expereince that Philip has just had here?  It’s not possible.  It’s a developmental competence that is contingent on the appropriate preceding steps having been mastered and the appropriate framework (the guided participation relationship) being in place.  So – you can support someone to learn how to share (and embed episodic memory) in this special reciprocal way, but there is no way it can be ‘taught’ as a ‘skill’.  It’s automatic, reflexive and happens in a nano-second once someone has the motivation to interact reciprocally.

And therein lies my problem with the misnomer of ‘social skills’ and the idea that improving aspects of someones social reciprocity (changing their autism) is not a good thing.

Unfortunately, ‘social skills’ projects and interventions continue to be promoted, even by the biggest autism charities and support organisations (who should really know better, given the evidence).  The sceptic in me says that one reason for this is that there is money in ’social skills’ groups, ‘social skills’ training, and conferences that purport to give parents the tools to improve ‘social skills’ etc….in fact, there is a whole industry built around this….but no evidence (that I am aware of….if you know of any, please let me know) that any of these ‘social skills’ programmes and interventions actually have a positive, lasting impact upon quality of life for people with autism.

By quality of life I mean sustainable and measurable improvements in the ability to make and maintain meaningful friendships and relationships (not just superficial friendships), as well as increasing independence and employability.

It’s kind of ironic that some autism organisations castigate proponents of certain interventions for exploiting vulnerable parents by ‘pedalling unproven methodologies’, whilst themselves promoting (and making lots of money out of) unproven ‘social skills’ groups and ‘social skills’ training.

In the spirit of the season, bah humbug!.........and bring on part two of this research which modestly concludes that ‘Treatment approaches which focus on interaction between children with autism and their caregivers have the potential to affect the children’s emotion regulation abilities which, in turn, are likely to influence other areas of emotional, cognitive, and social development.’  

My money is on part 2 of this research telling us exactly which areas of emotional, cognitive and social development this type of intervention can improve.  And my money is on these being some of the difficulties at the heart of autism.  RDI was the intervention used in part 1 of this study by the way.  Happy New Year everyone J