Tuesday, 20 May 2014

The social model of disability, diversity, ABA, and autism

I’ve just listened to a short radio piece on the use of Applied Behaviour Analysis approaches to help children with autism learn. The segment is from BBC Radio 4’s You and Yours programme. Classic BBC in that they like to see a balance of views presented. There is some anti-ABA and some pro-ABA approaches.

For those of you outside of the UK who may not be able to listen to this piece, you may well have heard similar media discussions in your own countries. Several parents (from the group ABA4All - https://www.facebook.com/ABAforallchildren) tell their stories about how their children’s skills have changed significantly (they argue) as a direct result of the use of ABA approaches. The parents are seeking to challenge the NHS in the UK who, they argue, spends money on support for children with autism with less evidence than ABA approaches and so ABA ought to be made available via the UK NHS. Discussion with experts following this piece includes an attempt to clarify that ABA is NOT a treatment for autism (see also my blog on what ABA is - http://profhastings.blogspot.co.uk/2012/12/autism-evidence-3-what-is-aba-for.html) and that the approaches are very much focused on the needs of individual children. The critical perspective is a little unclear, because it is somewhat indirect. Luke Beardon (http://www.shu.ac.uk/faculties/ds/deci/staff/beardon-luke.html) argues that he prioritises a social model of disability rather than a medical one, and that no one treatment for autism will suit all children.

Interestingly, we also hear a statement from the UK National Institute for Care and Health Excellence saying they found no evidence for ABA when they reviewed treatments for children with autism. This is an incorrect statement in my view, and I have written about this before (http://profhastings.blogspot.co.uk/2013/04/autism-and-evidence-6.html). NICE actually do recommend several ABA approaches in their guidance. In addition, their methodology is so medical model focused that it misses the importance of how to consider evidence in support of complex (often more educational) interventions such as those based on ABA (http://profhastings.blogspot.co.uk/2012/12/who-do-you-believe-model-for.html).

I’ll not write more about the evidence base for ABA approaches in autism since my views on that are available for anyone to read and to consider whether they agree with me. I do want to pick up on the issue of the social model and also the diversity in autism (hence, no one treatment fits all).

The social model and ABA

I don’t intend a detailed review of the social model of disability here, and I am no expert. However, my understanding is that the social model at its core is about the responses of other people/society being what disables people. A medical/disease model sees conditions as things to get rid of – just as physical illnesses are subjected to a cure process. 

We know that ABA approaches, by definition, are firmly grounded in the view that the context around someone and how they behave is where we look to understand why things are happening as they are. Similarly, the environment (the social context in particular – what other people do) is what is changed in ABA approaches to deliver learning and other positive outcomes for people. This is exactly the approach that is applied in working with children with autism. ABA professionals should look to what it is about the environment, especially the social and educational environment, that needs to change to adapt to the child with autism. Most obviously this is seen in the fact that in early intervention in particular the teaching approach is different – more structured. There is little more significant in a child’s environment than how they are supported or taught during school (and also of course at home).

Behaviour analysis is also not informed by a medical model. It doesn’t recognise psychiatric or other medical labels for “disorders” as helpful explanations. Given this, ABA professionals should not be talking about “curing autism” – although I recognise that some do. ABA approaches in autism are instead focused on helping children (and adults) lead full lives, achieving the things that are important to them (and to their families). It is not about taking away autism at all. In fact, this is often a criticism of ABA approaches – that either they do not treat autism (note the medical model language used here), or that they don’t measure the core features of autism as outcomes. On the latter point: Of course not! First, we’re not trying to get rid of autism. Second, getting rid of autism is also unlikely to be the priority of a person with autism or their family so these “core features” are unlikely to be targeted.

At the very core of things here, my argument is that ABA approaches are compatible with a social model of disability. ABA approaches are enabling, emphasise that the environment needs to change to accommodate and support those with disabilities, and are not about getting rid of a disabling condition.

Therefore, it makes no sense to criticise ABA approaches as being anti-social model of disability. It certainly makes no sense to then add to the argument against ABA using perspectives derived from a medical model (e.g., ABA doesn’t “treat” the autism or the underlying neurological differences).

Diversity in Autism and ABA

My comments above make it clear that ABA approaches fully respect diversity. In fact, I have argued before that ABA approaches are the ultimate person/child-centred approach. Everything is focused on the child and their needs. Understanding the individual child’s strengths and weaknesses, understanding their preferences, understanding how their autism affects them day-to-day, designing a bespoke programme of support/learning, and also measuring progress at the level of specifically recorded outcomes that are individual to the priorities for that child. This is what a good ABA “programme” for a child will be like. There may be some similar pieces in several children’s programmes (e.g., perhaps several of them will use PECS as a communication tool), but the overall programme/support around each child will be different.

Because ABA is not one specific “treatment” for autism, and flexes to incorporate the full range of diversity, I also do not understand a criticism of ABA approaches that starts with “one approach to autism is not going to suit all children”. Actually, ABA offers a coherent framework within which probably the vast majority of needs and diversity can be understood and responded to (in terms of individualised supports). I can’t think of any other approach that offers that flexibility, respect for diversity, and coherence. Perhaps someone can put me right on that if there is another similarly diverse model out there. 

There is no darkness behind ABA (it is not the one ring to rule them all and in the darkness bind them), just people trying to understand and work out how to best support children with autism and their families. It is time for rapprochement on the common ground that is a social understanding and a respect for diversity in autism.


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