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 http://bit.ly/vLkMNE.  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 http://bit.ly/uH35zu 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


  1. Hi Zoe, Happy New Year to you and your family. Great post... I look forward to more!! ;)

  2. Great blog Zoe. Very refreshing. Keeep up the good work. Happy new year

  3. Thanks Di and Declan. Good to have your feedback and support :)

  4. Interesting! Resilience is something we need to understand in the context of daily life and it's good to see Philip developing it and getting the hang of the cooker too. I do feel that social skills groups aren't for every one but providing some chance of socialising is important to adults on the spectrum, loneliness and lack of interaction is hard for many people to deal with. Once you have passed through the education process it can be difficult to get contacts beyond the family and as even these may reduce with advancing years, its important to develop the skill of linking with other people and sustaining meaningful relationships.

    take care


  5. Thanks for your comment Carole. I'd love to see 'social reciprocity' type groups rather than 'social skills' groups - somewhere where those with autism are supported to develop in the way you see me, Philip and Louis interacting. You are right about the lack of opportunity for adults with autism to be with other people (if they want to). I would love, for example, to see the NAS and other autism support organisations using the Autism Act to promote the commissioning of appropriate social learning and sharing opportunities.

  6. If I could, I would take autism and kick it's backside right out of the door. Autism is not my son, and I would be very happy to see autism go. He is beautiful, funny, smart and that is him, not autism.
    Great blog Zoe

  7. Nice one Laura! My sentiments exactly.

  8. Hi Zoe, thanks for visiting my blog earlier.

    Very thought provoking post. A lot has been written by bloggers, including myself, on the subject of Autism and changing their child etc. I have concluded that Autism is part of my son but it does NOT define him.

    On the subject of changing your child and social skills I believe that the interventions we have used over the 7 years have made such a difference to my boy and the quality of his, ergo our, lives. I have often said, as have others that he is now 'a different child'. So yes, we have 'changed our child.' I believe,in our case, (and can only speak for myself)that through the interventions we have peeled back the autistic layers around our boy and the real him, capable of surviving in mainstream society has emerged. We change our children to fit into our society it seems and some will say why should we? There are indeed times when society can learn from our kids ;-)

    We spent a lot of time working on social skills with great success, I even helped with a social skills/Drama therapy group. It took 4 Years for my boy to learn that choking/punching/kicking a child was not the correct response to a perceived misdemeanor! That lesson clearly didn't come easy but it WAS learned. My startegy has always been to give him an alternative acceptable behaviour to use. In the example above it was 'tell an adult or walk away'. I argued with teachers that punishment could only be given (in any situation/behaviour we were working on) if he didn't use the alternative strategy(ies). I have found that some lessons/skills can be learned and understood and others just learned... 'I must react this way as I have been told this is correct!'

    I hope that makes some sense?

    xx Jazzy

  9. Re Carole's post my daughter 19.5yrs attends a couple of ASD pub groups that are overseen by a local NAS member & social services. Their role is to just watch there is no trouble really & then just leave the group to get on with mixing. Through these groups she has developed a couple of friendships & has a boyfriend (almost a year together) that she sees outside the group & texts / phones too!

    I don't believe she would of sought out those friendships if she hadn't been using RDI beforehand as she really had no clue on how to successfully interact, build & maintain a relationship beforehand.

  10. Thanks Lissilou - great real life example of how working on social reciprocity can help teens/young adults to get the most out of social opportunities.

    Jazzy - that is just a really great point you make about the fact that we change (typically developing) children to fit into our society anyway....so what's the difference if we change our kids with autism to fit in better? I like your take on that. Fitting in is really all about coping and being adaptive - it doesnt mean we all have to be the same.

  11. Love this blog post Zoe. Such a clear and elegant explanation of how the process of resilience-building works and how social competence can be developed. I long for the day when this kind of (experiential) learning will be applied in educational settings as a matter of course instead of the static systems commonly peddled (no offence) by speech and language therapists in lieu of evidence-based interventions. Autism is the name given to a set of developmental differences, some of which may give the individual a unique and interesting perspective on life, some of which may enable the person to achieve remarkable things, and some of which may distress and/or frustrate the hell out of the individual with autism (not to mention those living and/or working with them). The issue of "taking away the autism" is one of those red herring topics that polarises people into for and against camps and taps into peoples' very real fears whilst sidestepping the really important issue of quality of life. (Excuse my ramblings, it's too late at night to be coherent!)

  12. Not at all incoherent - quite the contrary....lucid and insightful. I especially like your description of how the issue of quality of life gets sidestepped in the polarisation of the 'for' and 'against' camps.