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
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). Dixon
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