Tuesday, 29 October 2013

BBC4 “Challenging behavior” film on ABA and autism - Guardian article



In today’s Guardian newspaper, Chloe Lambert asks “It is right to try to ‘normalise’ autism?” in an article prompted by the upcoming BBC4 documentary film “Challenging Behaviour” (awful title, I hope the film is better). The article can be found at:


So, we have an article with that interesting question but the story is all about the use of ABA as an educational approach for working with children with autism. The question is important, and it is an ethical one. To use this question as a title for a piece about ABA-based autism education is unhelpful mostly because I argue that ABA is nothing to do with ‘normalising’ autism just as ABA isn’t an intervention for autism of course.

I’ve written extensively, and in the public domain on this blog, to help people get a better understanding of the use of ABA methods as an educational approach for children with autism. To be fair, the Guardian article does (I think) a pretty good job of giving a picture of how ABA is used flexibly to work on a number of key areas for children, is individualized, reward-focused, and has pretty good outcomes. The aspect that makes my heart sink is to see quotes from autism experts that, again in my view, just aren’t accurate.

Please take a look at my description of ABA and its use with children with autism. This does relate well to the Guardian article, but is in a little more depth:


It is a real shame to see the ‘normalising’ issue coming up yet again, especially in the quote from Liz Pellicano (who I think is fantastic, btw) suggesting that the “underlying ideology of ABA” is “to make them indistinguishable from their peers". This is a criticism of ABA about which I have a very clear view. Here’s a full quote from my earlier blog on criticisms of ABA (see the full blog at http://profhastings.blogspot.co.uk/2013/03/autism-and-evidence-5-15-criticisms-of.html ):

The criticisms here focus on a number of related points. The first is that ABA approaches are focused on taking away something of the child’s autism – trying to make the child “normal” in some way. Critics argue that this also leads to proponents of ABA approaches trying to convince parents and others that they can “cure” a child of autism, or more generally that “ABA can lead to recovery” from autism. A second area of criticism is that ABA focuses on reducing/removing behaviours that cause no harm for the child and in fact are functional for them (especially stimulatory behaviours – “stims”).

Some discussion of this issue can be found in two of my previous blogs, so please take a look at those first:


In summary, ABA approaches in autism do not “decide” which behaviours to focus on in terms of developing new skills or reducing existing problematic behaviours. Multiple perspectives are used to identify targets for intervention including the child, their family, teachers etc. Ethically speaking, behaviours ought to be the target for reduction only when suitable alternatives are available for children (and these may have to be taught), and when the behaviour in question is clearly interfering with an aspect of the child or family’s experience of quality of life. Sometimes, “stims” may be targeted for reduction for these reasons, but there is no prescription to do so as a part of an ABA programme.

When it comes to a broader normalizing agenda, this is an issue that is not specific to ABA. In fact, educationally focused interventions in general ought to be about making a positive difference and not succumbing to a medical model agenda of cure or recovery.

That said, unfortunately, it is true that some proponents of ABA sell their services on the basis that recovery “is possible”. Thus, many people may have heard these qualified promises, or perhaps stronger promises made. However, proponents of many other interventions in autism also make similar (sometimes much stronger) claims. The fact is that many interventions exist within a marketplace where they are trying to attract attention of parents as “consumers”. Until autism organizations and government bodies recommend (and fund) only interventions with a clearly demonstrated evidence base, this marketplace will continue to function.

An important point to make is that just because some individuals or organizations argue that ABA can lead to some sort of recovery from autism does not mean that this is what ABA is all about.

It is also important to point out that the same autism experts who criticize the potential ‘normalising’ focus for ABA suggest that autism symptoms ought to be the outcomes measured in autism intervention research. This is a rather odd positioning, and not one that is core to the ideology of ABA at all. The whole field is tainted by a medical model of autism (see http://profhastings.blogspot.co.uk/2013/04/autism-and-evidence-6.html ).

A further autism expert view from the Guardian article is the following: “Dr Luke Beardon, senior lecturer in autism as(t) Sheffield Hallam University, argues that ABA's focus on behaviour and rewards means that children may not learn how to make decisions for themselves”.

I’m not sure how children are meant to learn how to make decisions if it is not taught to them, and they learn the outcomes of making decisions. Again, this robotic learning undertone (also mentioned elsewhere in the article) is spouted by people who just don’t know what they are talking about! Again, my blog opening discussing criticisms of ABA has lots of “answers” on this issue and related ones - http://profhastings.blogspot.co.uk/2013/03/autism-and-evidence-5-15-criticisms-of.html

In concluding the article, a question is asked why ABA isn’t used more in UK schools. One answer, once you understand what ABA is, is that ABA is used everywhere and underpins much of modern evidence-based education. So, it is a strange question. Specifically in relation to autism though, the conclusion is: “Much of the evidence suggests that autistic children do best with a combination of approaches.” I’m afraid this is total rubbish, and it is hard to be patient at all with such a statement. I do not know of Randomised Controlled Trials comparing an approach to autism education that is eclectic in its use of approaches, versus a clear model like a behavioural education model, against typical education for children with autism. Educational delivery models are rarely tested in autism at all, so the evidence to support such a conclusion is missing. Interestingly, there are UK data (not from a RCT – please do note) showing better outcomes from a behavioural education model compared to eclectic education as usual for children with autism (see http://profhastings.blogspot.co.uk/2013_06_01_archive.html )

So, Chloe Lambert at the Guardian, a good attempt to provide an interesting and balanced perspective on ABA and autism. When will someone truly update for the public what ABA is and how it might be used to improve education for all children, including children with autism? I know it can be hard to find the “moderates” who are supportive of ABA, but we are out there…

Fingers crossed that the BBC4 film itself gets this right. Tuesday 5 November at 9pm (http://www.bbc.co.uk/programmes/b03gvnvm ). The description on the BBC4 website suggests that the focus is yet again on the ‘normalising’ debate. Let’s see if it makes good TV, and more importantly if it is smart and balanced.

12 comments:

  1. It is exasperating: if I teach my daughter to read, write, use a toilet etc, all Brownie Points to me as a mum; if I and the ABA tutors teach my autistic boy the same stuff, we are "denying his true autism" or trying to "normalise" him. This is just prejudice, dressed up in the clothes of concern.

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  2. Thank you for that very interesting perspective. I'd not thought about that comparison before. Can I quote it in presentations?!

    There is clearly important research to do to capture parents' and other family members' perspectives on "using" ABA.

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  3. What is normal? The world would be very boring if we were all "normal" every child is a blessing and has the right to be given the tools to achieve their full potential it really doesn't matter how they get there. If a child who is thirsty can't ask for a drink surely they have the right to be taught the tools (signs) to ask for a drink to quench their thirst this doesn't make them "normal" this makes them amazing children who have the ability to learn though all the challenges that they face. ABA all the way help/teach the little people how to achieve their potential.

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  4. ABA has really, really improved my daughter's life. It has reduced her frustrations in not being able to communicate (she self harmed), and motivated her to learn. We continue to see the benefits as she is helped to manage her anxiety herself and her sensory issues. It enfuriates me that it is not made more widely available and therefore it tends to be only the professional/educated parents who are confident enough to seek it out and fighet for it.

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    Replies
    1. Thanks to both of you for these comments. It is really important in this debate to have the views of autistic people fully represented, and the BBC4 film does do some of that. However, parents' and other family members' views mustn't be ignored.

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  5. Would you agree with a regime to reward a child in a wheelchair when they walk like a 'normal' child - and, unless they do what 'normal' children do, refuse to reward them?

    Autism is a disability just like being unable to physically walk - but because it's 'hidden' it means many parents, relatives, friends etc don't see it as a disability, they see it as something that can be fixed.

    The simple fact is, people with autism have developed differently, they function differently and, by their very nature, are going to be different from the majority of people - but does that mean we should try to change them? I refer to my earlier example - would you try to change a child who was born a paraplegic?

    Yes, by all means help them to cope and function socially - but many of the traits of autism (the repetition, routine, twitches etc) are coping methods anyway, so they are already coping. When a person is in a wheelchair shops, businesses, houses etc need adapting - perhaps with access ramps - so that disabled person is able to function 'normally' in society. But when the disability is autism why is the emphasis on changing the person and not changing the environment? People's attitudes need to change, people need to accept that everyone is different.

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  6. I absolutely agree, and that's the place that the whole autism field should be working to collaborate. Following your analogy, ABA is the wheelchair. For children with a significant mobility difficulty, we do two things. First, we give them a wheelchair so that they can get around. Second, a social model of disability guides the fact that society should adapt to allow the wheel-chair using child to participate fully in life as they would like to.

    My point is that we don't leave the child without a wheelchair in the first place. For children with autism, don't we need the same dual response - offering ways for children to develop their skills, and at the same time working to change attitudes?

    ABA is not the same thing as trying to change autism.

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  7. One mums experience with just starting out in ABA in her adult son with autism. http://www.autismseizureselfinjuriousbehavior.com/2014/01/interpreting-subtle-language-of-severe.html

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