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:

http://www.theguardian.com/education/2013/oct/29/specialeducationneeds-autism

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:

http://profhastings.blogspot.co.uk/2012/12/autism-evidence-3-what-is-aba-for.html

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:

http://profhastings.blogspot.co.uk/2012/12/autism-evidence-3-what-is-aba-for.html

http://profhastings.blogspot.co.uk/2013/03/recovery-from-autism-false-hope-or.html

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.

The challenge for behaviour analysis in the UK: Some thoughts on the future

If you have read some of my other blogs, you could be forgiven for thinking that my interest in the application of behavioural interventions is dominated by their use in the field of autism. Quite the contrary. The autism and behavioural interventions community is an important part of behavior analysis in the UK, but it is clearly not the full story.

We are at an interesting point in the development of behavior analysis in the UK. The UK Society for Behaviour Analysis [http://uk-sba.org/] has been established recently and held its first Annual General Meeting a couple of weeks ago. There is also an increasing recognition of the value of interventions in a variety of areas that are based on core behavioural principles. Just focusing on the health and social care domain, the UK National Institute for Health and Care Excellence (NICE) has recommended a range of behavioural interventions and approaches within its guidelines including:

• Behavioural activation for depression
• Dialectical Behaviour Therapy for personality disorder and self-harm
• Behavioural parent training to support families of children with behavior problems
• Behavioural intervention, including functional assessment, for challenging behaviours in people with dementia, adults with autism, and children with autism
• Behavioural skills teaching methods for adults with autism

NICE is also currently working on a guideline that will recommend interventions for challenging behaviours in adults with intellectual disability. Given that national guidance in the UK already identifies Positive Behavioural Support (PBS) as the intervention model of choice, it seems likely that PBS will emerge as a strong part of the future NICE guideline.

That short overview is health/social care focused, but behavioural interventions are the bed-rock of evidence-based approaches in a range of other situations including teaching in schools, behaviour management in schools, “nudges” to change behaviour on a large scale across the population, safety in high risk industries, and “incentivizing” performance in many business contexts.

If we take a broad perspective about behavioural interventions, it seems that the momentum is with the application of behaviour analysis in the UK. Several behavioural interventions are already recommended for use. This should be a fantastic time. The opportunity is significant because the needs are significant. If we imagine the often-used picture of an iceberg, behavioural interventions are only addressing a tiny fraction of the children and adults in the UK who could benefit. As an example, we carried out a census of schools and school units in the UK who follow explicitly a behavioural educational model across the whole of the curriculum [http://www.sciencedirect.com/science/article/pii/S1750946711001875]. These schools catered for a total of 258 children with autism. This does not compare favourably to the total population of school aged children with autism in the UK.

So, there is a massive amount of work to do to disseminate behavioural interventions more widely. This is the current and future challenge for behaviour analysis in the UK.

How might the behaviour analysis community in the UK meet this challenge? First, we need a body in the UK that explicitly focuses on the dissemination of behavioural interventions across all sectors in society. The existence of the new UK-SBA is a real benefit in this respect. If the UK Society can avoid navel-gazing such as a primary concern with the needs of behaviour analysts rather than the needs of society, there is great hope.

A second issue is that it is important to identify the areas for growth and to run with the opportunities. This might involve re-claiming existing behavioural interventions for behaviour analysis. Thus, we need, for example, to re-claim parent training and behavioural activation for depression. In addition, we need to understand where the energy is for change. Because of the significant interest across the UK in the Winterbourne View scandal [see http://profhastings.blogspot.co.uk/2013/05/winterbourne-view-will-happen-again-and.html], there is great energy for PBS at the moment.

Third, those with strong behavioural competencies and allegiance to behaviour analysis need to be out there in the debates about evidence based intervention in a variety of contexts. It is amazing when you look how many evidence based interventions are built on basic behavioural principles. It is not necessary to rub others’ noses in it so to speak, but we need skilled communicators who can keep the connection with behavioural theory and practice as much as possible. Essentially, we need influencers who are the friendly face of behaviour analysis and can use their influence to support the dissemination challenge.

A final point is that actually behaviour analysts/behavioural psychologists need to explicitly study/research why there is such a large gap between the needs behavioural interventions can address and actual roll-out in society. We need behavioural analyses and interventions to deal with this problem directly. For example, anecdotally, the language used by behaviour analysts is off-putting and confusing. So, we need to understand the barriers to the uptake of behavioural interventions and then we can remove them.

Return to baseline: Behavioural therapies and the DSM5 debate

 

I have been intrigued recently by online debates, blogs, and presentations at conferences and other events raging against the new DSM5 diagnostic criteria for psychiatric disorders. A core theme of the anti-DSM5 camp is that we would do better to focus not on diagnostic labels but on the core problems most distressing to individuals. Psychological treatment should focus on core behaviours (“symptoms”) as opposed to treating the “disorders” that are at the heart of DSM5.

These ideas are sometimes presented as if they were new or radical. Oftentimes, I have been surprised by the lack of historical perspective on these issues. In particular, there is a branch of psychology that has never signed up to the notion of psychiatric disorders, has always been uncomfortable using disorder labels, and should have a focus on core behaviours that need to be changed. This branch of psychology is behavioural psychology, most significantly aligned with the science of the application of learning theory to the resolution of problems of social significance (Applied Behavioural Analysis [ABA] – see my blog http://profhastings.blogspot.com/2012/12/autism-evidence-3-what-is-aba-for.html).

In the early days of psychological therapy (after the origins of psychological therapy in psychodynamic approaches), it was all about the application of behavioural theory to psychological problems. However, we were consistently told that these approaches failed to consider language and emotions and so a cognitive revolution was needed. This reflected a broader alleged paradigm shift in psychology towards cognitive psychology. Recent debates around DSM5 seem to suggest that it was a mistake to throw out the behavioural baby with the bathwater. Anti-DSM5 folks also seem to have forgotten that behavioural baby. But the baby survived, carried on growing up, and is still around.

Misperceptions abound about the inability of behavioural psychology to consider the experiences and behaviours we call emotions and thoughts. B. F. Skinner himself clearly recognized that these experiences and behaviours had to be understood and that intervention approaches built on behavioural theory had to be able to address them. Over the decades, many researchers and clinicians working from a behavioural perspective have continued to develop Skinner’s early ideas and to establish new behavioural therapies that include powerful change processes focused on thoughts and emotions. These new behavioural therapies are gradually gathering an evidence base and receiving recommendations in guidelines for the treatment of mental health problems.

Two good examples of the new behavioural therapies are Acceptance and Commitment Therapy (ACT) and Dialectical Behaviour Therapy (DBT). The developers of ACT explicitly combined traditional behavioural therapy concepts such as behavioural activation (broadly conceived here) with recent ABA models of language. ACT has been applied to address numerous problems, including evaluation in several Randomised Controlled Trial designs. Because ACT is a broad behavioural intervention approach, it is applicable probably to pretty much all human psychological distress. And this is how it has been evaluated – not really specifically for any particular “disorder” (although you will see, for example, research papers about ACT for people with Psychosis). DBT is a meld of ABA and mindfulness-based approaches that directly address significant problems of emotional regulation. In the world of the UK National Institute for Health and Care Excellence (NICE), DBT has been recommended for the treatment of Borderline Personality Disorder and also for Self-Harming Behaviours. Note that NICE works on a medical model (compatible with DSM) in that it reviews evidence for medical disorders by their label – including psychological problems.

So, what was my point in writing this blog? First, I am making a plea that everyone especially in the anti-DSM5 camps takes a look back at some history and recognizes the value of the behavioural psychology approach focused on the amelioration of specific behaviours that are distressing for individuals. Second, there needs to be some recognition that behavioural psychology never went away but continued to develop. Now, behavioural psychology is perhaps ahead of the game. People should inform themselves about how behavioural psychology has developed and look to the new behavioural therapies as examples. Third, there could be a strong alliance between the anti-DSM5 movement and the field of behavioural psychology.

It also has to be said that in some ways, the cognitive “revolution” in psychology has reinforced the focus on diagnosis. I’m forever seeing research and increasingly focused treatment models that are sold as “CBT for depression”, “CBT for Obsessive Compulsive Disorder” and the like. Some responsibility needs to be taken for the fact that perhaps an unintended consequence of the cognitive revolution has been the strengthening of diagnosis-based approaches. So, let’s have a return to behavioural psychology: a Return to Baseline!

Mindfulness in the field of intellectual disability and autism: A bandwagon, or a considered development?

Mindfulness is hot at the moment. Mindful meditation as a way to enhance life and well-being is popular in lots of communities, and has been gaining research attention too. Mindfulness-based interventions have also been applied to just about every health and social care “problem” experienced by humans. The evidence base is impressive, including strong results from several randomised controlled trials, and has already resulted in a mindfulness-based intervention (Mindfulness Based Cognitive Therapy – MBCT - for depression) being recommended by the National Institute for Health and Care Excellence in England and Wales.

Mindfulness-based interventions in the intellectual disability and autism fields

Given the reach of mindfulness and its huge popularity, it is not surprising that practitioners and researchers working with children and adults with intellectual disabilities (ID) or autism have started to explore the potential of mindfulness-based interventions with these individuals and their families and carers. Interest is such that Ramasamy Manikam and I were able to guest edit a full special issue of the journal Mindfulness on this population in June 2013. The special issue includes a great collection of papers, including a free download of our editorial:

http://link.springer.com/journal/12671/4/2/page/1

Among the evaluations of mindfulness-based interventions in the ID and autism field, there are examples of randomised controlled trials. For example, Nirbhay Singh and colleagues in our special issue reported on a RCT of the Soles of the Feet mediation intervention for adults with mild ID and problems with anger/aggression (http://link.springer.com/article/10.1007/s12671-012-0180-8). Also in 2013, Spek and colleagues published a RCT of an adapted version of MBCT for adults with autism (http://www.sciencedirect.com/science/article/pii/S0891422212002156). Mindfulness-based intervention for parents and teachers of children with developmental disabilities has also been evaluated using a RCT design (http://psycnet.apa.org/journals/dev/48/5/1476/). So, high quality research designs have been applied to testing mindfulness interventions in the ID and autism fields, and with encouraging outcomes.

Why mindfulness?

It is great to see these results emerging from RCTs, and a range of other outcome studies published in scientific journals in recent years. At the same time, I would caution some more thought about why mindfulness interventions might be suitable for individuals with ID, autism, and their families and carers. Returning to a topic in one of my earlier blogs (see http://profhastings.blogspot.co.uk/2012/12/who-do-you-believe-model-for.html), the evidence for interventions can be thought of as developing through a series of phases. This development does not have to always be linear, but it is very important to be able to articulate theoretical and other reasons why an approach to intervention may be worth trying out and testing in large scale and expensive RCTs. Before we jump on the mindfulness bandwagon, let’s just rehearse some of the reasons why it was worth making the jump…

First and foremost is a point of principle. If good stuff is happening in the use of mindfulness for people withOUT ID or autism, then children and adults with ID and autism should have the same access to the good stuff. Adjustments may need to be made to ensure this access, but it should be happening. Thus, at least in the case of MBCT it is a NICE-recommended treatment for depression in England and Wales. How is MBCT being made available for people with ID or autism? I suspect that most of the time it isn’t. Someone should do some research into that access question.

Leaving that core principle aside, what other reasons are there to think that there is a good match between mindfulness-based interventions and the needs of people with ID or autism and their families and carers. Here are some that I have included in recent presentations:

·      Individuals with ID or autism, and their family members (especially parents) face some real and ongoing challenges, stresses and strains in life. These manifest in increased risk for psychological problems in individuals themselves and their parents. The challenges are persistent – some of the difficulties cannot really be taken away or will take a very long time to be fixed in society at large (e.g., poverty, societal negative attitudes). So, one-off “fixes” are not likely to be helpful. Instead, supports and interventions that help to build resilience are needed so that people have some skills to cope with new or increased challenges as they emerge in the future. This is also partly about empowerment – making sure people have skills to enable them to control their own environments rather than being continually dependent on others for help and support. Mindfulness is not about fixing problems, and so is a good match with the need for resilience to cope with life. In addition, mindfulness-based rely on “training” new skills or new ways to approach things and in this respect they can be seen as empowering.

·      Already hinted at is the notion that mindfulness interventions do not come from a pathological stance but are more focused on positive lifestyle change. Given that ID and autism are not “problems” in themselves to be “fixed” then again this is a good match with the orientation of much of the philosophy of services supporting people with ID or autism.

·      There is some research suggesting that increased dispositional mindfulness (i.e., in general, you are a more mindful person) and situational mindfulness (especially, more mindful in the parenting role) are associated with better psychological adjustment (lower stress, less depression and anxiety) in parents of children with ID or autism. The implication is that targeting increases in mindfulness could then be a way of improving outcomes for parents.

·      Research evidence also suggests that coping with stress using avoidance strategies is associated with poorer psychological adjustment for parents and increased chances of burnout or work stress for support staff in ID/autism services. Thus, interventions that reduce avoidant coping are likely to lead to positive outcomes for parents and staff. Again, mindfulness based interventions tackle avoidance head-on and encourage engagement with difficult thoughts and emotions (pretty much the opposite of avoidance).

·      Some specific problems faced by individuals with ID or autism might also be a good conceptual match with mindfulness-based interventions. In particular, challenging behaviours can often serve the function of changing aspects of the social environment that a person with ID or autism finds difficult/aversive. The ability to regulate emotional responses, and sometimes to increase tolerance for discomfort could help to reduce the chances of challenging behaviours occurring (and their associated impacts on others and the person themselves). Mindfulness-based approaches could be a good way to help people regulate emotions in particular. In addition, carers find challenging behaviours aversive to deal with and a real challenge is to work out how to reduce the chances of carers responding to their own strong emotions and instead to act in a way that will be less likely to maintain challenging behaviours over the long term (see http://profhastings.blogspot.co.uk/2013/05/winterbourne-view-will-happen-again-and.html). Mindfulness-based approaches are likely to be helpful for staff/carers in this situation.

I could go on with some more ideas, and hopefully you will have ideas of your own. However, the main point is that we must be able to articulate WHY mindfulness-based interventions might be a good idea to use in a particular context in our field. Simply jumping on the mindfulness bandwagon will do a disservice to the people we work with and their families and carers.

It is also clear that there is a significant research agenda still to be addressed in relation to mindfulness and ID or autism even before we generate high quality research evaluations of intervention outcomes. For example, research on the relationships between mindfulness-related processes and well-being in people with ID/autism and carers is needed, as is research on how we measure mindfulness in people with ID and autism. There are also the challenges of what mindfulness might mean for people with more severe ID – is it still a relevant concept, in what ways, and what might mindfulness-based interventions look like for these people.

Hopefully, what we have so far is just the beginning of a long story…

Are education systems interested in using evidence in practice?

 

I could have written this blog about any school system, but I work at Bangor University in Wales, our research team has carried out education research (especially in special education in Wales), and there is some debate in Wales this week about using technology to deliver educational outcomes for young children. Follow this link for a BBC news story about increased reading skills and self esteem in children working using tablet devices in their educational environment: http://www.bbc.co.uk/news/uk-wales-22816389

Others have already asked what exactly is the evidence for the outcomes discussed in the story. It is not clear if a controlled research comparison has been conducted (let alone a gold standard randomised controlled trial evaluation), and almost certainly we do not know (if there are indeed proven positive outcomes) which active ingredient led to any effects. The teaching is delivered using tablet devices and the changes seem to have been attributed to the technology. However, it seems clear that there is a peer teaching element involved, perhaps any instruction delivered via computers as teaching machines is more consistent and directly available to every child than is typical in a classroom, and almost any new initiative can be driven forward by enthusiastic teachers and/or children? So, if there are positive outcomes, there may be many explanations and it matters what the explanation is if we are to understand the implications for Welsh education.

My point is not to be grumpy and critical in this blog (although there are clearly many unanswered questions). However, Welsh Government minister for education Leighton Andrews AM has suggested in the media that all schools in Wales can learn from the tablet-based education work in the Swansea area. First point is that such a recommendation is unwarranted until we know WHETHER the teaching approach works, and then HOW it works (what is actually the active ingredient). The remainder of this blog is designed to make a couple of other points.

A cautionary tale

Over a period of five years, a research and practitioner team from the School of Psychology at Bangor University (myself, Dr Carl Hughes, Dr Corinna Grindle, Maria Saville) worked with other colleagues and in partnership with Westwood School in Flintshire and both Flintshire and Wrexham education authorities to develop and evaluate a comprehensive educational model for young children (Keystage 1) with autism. We took evidence from the existing research literature on educational approaches for children with autism, especially comprehensive behavioural models (see one of my other blogs for a summary - http://profhastings.blogspot.co.uk/2012/12/autism-and-evidence-4-does-aba-work-for.html)

Our main task was to use this evidence and to translate it in two main ways. First, much of the existing research evidence focused on home-based or specialist clinic-based early behavioural educational intervention. We were working in a school setting, and a mainstream one at that. Second, no existing research focused on how the behavioural model could be dovetailed with the requirements of a national curriculum and a broader education system. I cannot pretend that this translation was easy, but the behavioural intervention team, teachers and classroom assistants, the school, and the education authorities pulled together to make it work. Although we drew on much of the existing evidence-base and the intervention approaches developed elsewhere, two considerable changes were made to what had gone before: an emphasis on mainstream educational integration for all of the young children with autism, and an exercise to match the evidence-based behavioural curriculum with the National Curriculum in Wales.

Not only was the practice developed into a model that dovetailed into the system (thus a great example of translation of evidence-based methods into practice), but the outcomes for the children with autism were excellent – when compared with similar children with autism receiving “education as usual” elsewhere in the UK (see http://bmo.sagepub.com/content/36/3/298.abstract). This research has proved popular – it is currently the fourth most read paper from the journal in which it was published over the past 12 months. So, someone likes it.

The practice and research team were also able to develop new practice and carry out evaluation of this practice to contribute to the evidence base. An excellent example is a paper we wrote that is now available online and will be published later this year: http://onlinelibrary.wiley.com/doi/10.1002/bin.1364/abstract. This project focused on adjusting an evidence-based mainstream online reading programme for children with autism and evaluating outcomes. The children with autism gained up to 3 years of reading age over online reading instruction period (sounds just as impressive as the Swansea data, right?!). This is not a controlled research study, but the point is that practice and evidence was being developed, and also within the spirit of the mainstream provision. Thus, the reading instruction used a mainstream evidence-based programme; not one developed specially for children with autism.

What has happened to this Westwood school autism provision now? Unfortunately, the education authorities decided to close it down (http://www.bbc.co.uk/news/uk-wales-politics-14331574).

The cautionary tale is that evidence of outcomes is clearly not enough for excellent practice to survive in the Welsh education system. Even the experience of taking existing evidence-based practices and translating them to be delivered within the existing education system is not enough. However, it seems that nice ideas perhaps without strong evidence (in the Swansea tablets case perhaps) do survive and thrive in the education system.

Although the Westwood school model was closed down, there is a massive legacy from the project. First, there are still further reports on new evidence-based practices for children with autism that will be published from the research over the coming few years. Second, the staff (our University experts, and also the classroom assistants we trained) have also gone on to make a big impact elsewhere. For example, special schools in Conwy, Gwynedd, and Anglesey have been using the online reading programme to teach children with intellectual disabilities to read; and other schools have evaluated the numeracy teaching model adapted by the Westwood project team. Third, the practice and evidence developed at Westwood is being used internationally (in England, Norway, Switzerland, and France amongst others). Fourth, and most importantly, the children with autism and their families who were educated by the Westwood team got a cracking education and learned a great deal of stuff whilst they were there. I hope that it has continued to make a difference to their lives.

Some priorities for the future

I hope that this blog doesn’t come over like a whinge about the closure of the Westwood autism education project. Of course, we are disappointed that the project was closed down. However, it has sent ripples of positive practice and great outcomes for disabled children all around the world. So, Wales can be truly proud that a small nation can do things sometimes to make a difference across the world (thanks to Wayne Crocker of Mencap Cymru for that “quote” today, but in a different context – I’ve just borrowed it).

What can Welsh Government do to ensure that evidence-based practice in education in Wales gets rolled out within the education system?

First, it is clearly important that there are ways to recognise excellent work that actually comes with strong evidence. The Westwood autism project is an example – the model and evidence is good enough outside Wales, so why not within? Are education experts just not aware that the data are there and that people have already developed a translational model that has been proven to work? I imagine that this applies to other research evidence of practices within the Welsh education system – that good evidence is simply not being used.

Second, there probably does need to be a stronger evidence culture within Welsh education (and in most other education systems – this is not just about Wales). This is needed at a number of levels. Policy makers may need to develop more of an understanding of how evidence works and how important evidence is. Teachers and schools also need to take some responsibility to understand evidence, how it is produced, and its limitations and strengths. This can start with the initial training of teachers, but it is an ongoing professional development issue. Finally, teachers need the tools to be able to evaluate what they do day-to-day within their classroom to ask “is what I am doing working FOR THIS CHILD?”. Such tools exist using ongoing simple data collection in the classroom, and are taught on the Applied Behavioural Analysis postgraduate programmes at Universities in Wales (at Bangor – Dr Carl Hughes is the programme director, and the University of South Wales – Dr Jenn Austin is programme director). Another Wales strength – so make use of it!

Third, where is the investment in education research and education researchers within Wales? Considerable investment is clearly needed to ensure that the Welsh education system generates high quality evidence, to ensure that education policy is evidence-based, and that our children get the high quality educational input that they need. There is a large investment in health and social care research within Wales via NISCHR. However, we know that many health and social problems are related to poor education and much inequality is related to poorer education. Thus, education is key to the well-being of everyone in Wales and actually important presumably to the long term economic burden of health and social care problems. So, the case for funding education research and education researchers within Wales is both direct and indirect.

Winterbourne View will happen again – and this is why…

After the BBC Panorama documentary programme conducted secret filming of the abuse of people with intellectual disabilities at Winterbourne View [see http://www.bbc.co.uk/news/uk-13548222], the nation was rightly shocked. Most people who work in the field were shocked too, but probably not totally surprised. This may be an indication of the fact that we know that abusive practices can easily happen, especially towards those people with intellectual disability whose behaviour challenges. In some sense, we know deep down that there is something about “challenging behaviour” that makes awful things possible.

It does feel like the government responses to the Winterbourne View scandal throughout the UK (e.g., there is a separate response to Winterbourne in Wales to the main Department of Health – DoH - response) have been rather slow to get going. There have certainly been some improvements since the draft DoH response document was published. For example, it is a no-brainer that more locally-based and person-centred service provision for individuals in the community is a good thing. Of course, this is good for quality of life and for people maintaining their family and social networks (rather difficult to do when you are placed “out of area” several hundred miles away). What makes us think that it is ok to “send people away” in this day and age, I just don’t know. Anyway, local provision should also be safer. Family and friends will be more involved with the life of the person and will be more likely to notice any signs of problems. Most responses to the scandal also suggest that increasing support staff/care staff skills in interventions within the Positive Behaviour Support family of techniques is also needed. Thus, there is a call for staff training. This will also probably be a good thing.

The point of this blog, however, is to explain a little about why I think theory and evidence tells us that this will NOT be enough. There are some serious omissions in the policy responses and also, I would suggest, limitations in the nature of Positive Behaviour Support interventions. So, whilst I fully support the positive changes being suggested we do need to deal with some of the missing pieces.

This blog is based on the presentation I gave today at the BILD International Conference on Positive Behaviour Support – many thanks to the conference delegates for their interest and positive reaction, and also to BILD for the invite! See http://www.bild.org.uk/our-services/events/the-bild-pbs-conference/

A functional understanding of carer behaviour

For 20 years now since the publication of my paper with Professor Bob Remington on “Rules of Engagement” [http://www.sciencedirect.com/science/article/pii/0891422294900086], I have worked with colleagues to try to describe the influences on those who work or live with “challenging behaviour”. Most importantly, it is clear that the variables that affect challenging behaviours are almost always other people’s behaviours. Thus, the best way to think about challenging behaviour is from a behavioural systems perspective.

In particular, our research over almost 20 years confirms that being exposed to challenging behaviour is distressing and aversive for carers. Thus, they will tend to behave in ways that reduces this negative experience for them. Unfortunately, these are then just the responses that will maintain challenging behaviour over long periods of time. We know that challenging behaviour persists very strongly over decades. In addition, carers seem likely to experience negative thoughts in relation to challenging behaviour. If someone is aggressive towards you, you are very likely to feel angry and it is a natural reaction to think that something must be done about that challenging behaviour. It isn’t fair, or the person shouldn’t be allowed to get away with it.

The problem here is perhaps that, especially in relation to the thoughts and statements of carers, we make assumptions that carers’ thinking is wrong and something to be fixed. We either try to select support staff who don’t overtly talk in this way, or we try to train it out of them. In fact, we might make these sorts of thoughts and feelings a taboo subject. This is likely to be a dangerous strategy, and may lead to some informal (perhaps hidden from view) working cultures and practices that are toxic both for support staff and also for those whose behaviour challenges.

A different perspective

Latterly, my work with colleagues on this problem has formulated the issue in a different way. Specifically, we’ve been making a different assumption – one that suggests that difficult emotions and thoughts are perfectly “normal” or to be expected. It is natural to find it tough to adjust to disturbing challenging behaviours, and our minds work in ways that will mean that we will often feel under threat when faced with challenging behaviour. This normalising of people’s experience is significant, but has some implications for what we do within services for people with challenging behaviours and what we need to include in the policy and other responses to Winterbourne View.

First, it is important to work directly on carers’ emotional life. This is not simply about work being stressful and having some work stress interventions around. Nor is it probably simply a matter of debriefing about the emotional impact of serious incidents on carers (too late once it has happened). Carers need to be better prepared so that they know that rather unpleasant emotions and associated thoughts about people that they probably would rather not have are normal and natural reactions. The significant point is then making sure that carers have skills that enable them to NOT respond to negative emotions and thoughts when they arise. Mindfulness and acceptance based approaches are more about noticing these things, but not engaging with them nor actively trying to get away from them. There are data emerging that mindfulness-based interventions may be beneficial for carers of people with challenging behaviours, although direct tests of the hypothesis that I have just posed have not been published (as far as I am aware).

Basically, the bad stuff has to be out in the open. Carers need to be able to talk about it and know that they are not going to be blamed for having these perfectly human thoughts and feelings. Of course, if you bring these things out into the open you also need supportive environments within which this happens. A culture of mindfulness and acceptance may be a way to do that.

Perhaps less “natural” but also maybe equally understandable are some more pervasive carer attitudes towards people whose behaviour challenges. Although we might try to train staff to think in line with Positive Behaviour Support models, and thus to have a more functional understanding of behaviour this is perhaps just too theoretical. In addition, most staff on the ground may be lucky to get perhaps a couple of hours’ training in their induction about understanding challenging behaviour. How can this be enough? More importantly, where is the analysis of what needs to be trained and what specific outcomes we are trying to achieve? We are also very clear that staff either must already hold “the right values” or tell them (in training, in our policies within services) what values they must espouse (at least when the important people are listening – but who knows at other times!). My position is that carer values/attitudes are too important to leave to chance. We must directly change carers’ attitudes.

This direct approach to attitude change, accompanied by a simple but clearly articulated theory about what needs to be changed and how to do it, is what underlies the Who’s Challenging Who training that I described in a previous blog [http://profhastings.blogspot.co.uk/2012/06/whos-challenging-who-changing-hearts.html]. Although the ideas behind this training are I think solid, our outcome data are only preliminary so more research is needed (researchers have to say that regularly in case someone thinks our usefulness has passed…).

What needs to be added to the responses to Winterbourne View?

The Elephant in the room is that some of the stuff we really don’t like to see happening among carers, and to carers, is just normal human stuff. This needs to be acknowledged openly. “They” say that everyone in certain circumstances could murder another human being. Perhaps the same is true here – maybe many of us could have colluded with that staff team in Winterbourne View under a certain combination of events/circumstances. If I’m really honest, I’ve hated some folks for a while with “challenging behaviours” – I have felt angry at being attacked, and then bad afterwards for feeling angry. Have you felt the same, or have you never been in that direct support role day-after-day with people whose behaviour seriously challenges?

So, let’s be honest and open about these difficult things and include in what we do going forward three things:

1.     Support and training for staff that helps give them coping skills that will make them more resilient, and help them not to get caught up in negative feelings and thoughts when they do pop up.

2.     Training to directly increase carers’ empathy for people whose behaviour challenges – putting themselves in the shoes of those that they support or live with. And this is not a one-off: we need to be reminded every now and then. In my PhD thesis, that was about a functional approach to care staff behaviour, I included in the front a quote from Harper Lee’s To Kill and Mockingbird. It was the one about not really knowing a person until you walk around in their skin. That initial analysis was rather rough around the edges but I think with attitude change training like Who’s Challenging Who, we might be finally getting closer.

3.     Designing the open cultures within services for people with challenging behaviour that supports the constant battle for carers’ hearts and minds.