Monday, 16 December 2013

554 voices – What people with intellectual disabilities and families and carers think about challenging behaviour

Numbers are not everything. However, the world tends to listen more to larger numbers of people. One feature of the Winterbourne View scandal in the UK is clearly that people with intellectual disabilities (ID) whose behaviour challenges services (those with challenging behaviours) were not listened to. Unfortunately, although individuals with challenging behaviour and their carers and families have communicated with elegance and passion about what they need in a post-Winterbourne era, their voices have not yet resulted in suitable action.

Either directly connected to the Winterbourne View scandal, or going on currently anyway, are several related pieces of work in the UK. Thus, there is a NICE review of interventions for challenging behaviour [], A Unified Approach [] is being updated, and several working groups are producing guidance on challenging behaviour services and especially on definitive reviews of Positive Behaviour Support as the guiding intervention model for the UK [].

Until now, these reports and guidelines have not benefited from systematic research-based analyses of the voices of people with ID and their carers and families. Two new pieces of research will hopefully help to change this situation, or at least contribute to what needs to happen next. My colleague Dr Gemma Griffith and I have carried out two reviews of qualitative research studies focused on how people with ID experience their challenging behaviour and the services provided for them, and families’ and carers’ experiences. The first of these studies was published in the latest issue of the journal Clinical Psychology: Science and Practice [], and the second will be published soon in the Journal of Applied Research in Intellectual Disabilities [].

If you do not have access to these pieces of research through a University or other library, you could try asking Gemma ( or me ( for copies…

554 voices

These two new research reports summarise the voices of 554 individuals with ID and challenging behaviour and carers and family members. In combination, these voices are louder and perhaps all the more powerful because of the consistency in the views represented and their direct relevance to the current debates.

In a previous blog [] I explained a little about why it can be useful to combine evidence across a number of research studies about the effectiveness of intervention approaches using a process called systematic review and meta-analysis. A similar process can be applied to qualitative research to draw together findings from smaller studies and to present a new analysis of the messages across research. In this way, the voices of small numbers of people can be amplified and evaluated within the broader context of findings across multiple research studies. This is not a simple summary process – giving an overview of the range of things said – but does involve additional qualitative analysis and interpretation. So, the two new research reports do not replace or negate the value of existing individual pieces of research. Instead, they offer an additional perspective. For those more convinced by numbers though, the new analyses also offer significant additional value (about 50 times the size of typical single qualitative research studies)!

“I’m not a patient, I’m a person”

In our first paper, data from qualitative studies with 163 individuals with ID and challenging behaviour are synthesised. There are some loud and clear messages for everyone currently working in the field of challenging behaviour and producing the large array of official reports. We present a summary picture that describes a vicious circle of challenging behaviour. First, there is considerable imbalance of power in ID services settings (people with ID are not in control of their own lives) and considerable dislike of challenging behaviour service provision. Trigger events for challenging behaviour (often the behaviour of staff members) occur in this context, and lead to challenging behaviours occurring. The response from services and staff is often some kind of restrictive intervention. Such interventions are experienced as aversive, and this feeds perceptions of imbalance of power and dissatisfaction again with services.

Although the typical experiences of services by people with ID and challenging behaviour are negative, our analysis includes positive dimensions. In particular, people with ID talked about their motivation to change challenging behaviour, which they also disliked, and their interest in learning new strategies to help with their challenging behaviours. People with ID also talked about how much better their experience was with staff who had good interpersonal skills, a respectful attitude, and treated them as individuals.

“He’s hard work, but he’s worth it”

In our second paper, we analyse data from 17 studies reporting the experiences of 391 family members and carers. An important starting point for the analysis, but one that is not often explicit in individual research studies, is the Love that parents have for their children. Families and carers do find challenging behaviour difficult, but this love underpins everything – it helps families through the tough times, it drives parents to seek excellent support, and it explains families’ frustration when services do not live up to expectations. Although this underlying Love might seem obvious, it does need to be made explicit.

The remainder of our analysis focuses on some of the more negative experiences faced by families and carers. A loss of a wider self-identity is apparent with lack of opportunities to live a typical life, coupled with family life being much harder work (so not being a relaxing environment). Family members also experience significant emotional and physical strain dealing with challenging behaviour. 

Perceptions of services were also very interesting. Families and carers wanted all services to have appropriate expertise in challenging behaviour, but emphasised the need for wholistic and joined up services not necessarily services that are just about challenging behaviour. Thus, there was the sense of a need for more challenging behaviour “literacy” across health and social care and education. Services were also perceived as creating more stress for families than the challenging behaviour directly, and supports provided were often inadequate for the level of families’ needs (thus creating some of the additional pressure – perhaps making things worse rather than better).

There were also positive views of services. Families appreciated professionals and services who offered tailored, stable and proactive support.


I won’t go on any longer because I’d be in danger of reproducing all the findings from this new research. Instead, I wanted to give you a flavour of the findings. I would also encourage everyone to get hold of these studies, think about the evidence, and use the evidence to inform service design, commissioning and day-to-day practice and training. This research tells us more about what it might be like to be in the shoes of individuals with ID and challenging behaviour and their families and carers. Five hundred and fifty four voices deserve an audience. I hope that this work will convince sceptics (for example: How can we rely on the views of one loud voice during consultation processes?), and also demonstrate again the value of applying high quality research methods to data in the ID field.

As for the UK response to Winterbourne View? No excuses. You have the data, now DO something!!

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 ):

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 ).

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 -

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 )

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 ( ). 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.

Wednesday, 23 October 2013

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 [] 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 []. 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], 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.

Friday, 27 September 2013

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

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!

Wednesday, 14 August 2013

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:

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 ( Also in 2013, Spek and colleagues published a RCT of an adapted version of MBCT for adults with autism ( Mindfulness-based intervention for parents and teachers of children with developmental disabilities has also been evaluated using a RCT design ( 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, 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 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…