We’ve all experienced challenging behaviour – throwing a tantrum, hitting people we love and refusing to cooperate. For most of us it occurred at a period in our lives around the age of two when the world was still new, confusing and difficult to navigate. As we started to learn how to do things for ourselves or how to ask others to help us, the challenging behaviours disappeared – we had more effective ways to get the things we wanted. Now imagine you never went through that second stage – you still had to rely on people around you to guess what you wanted and when. And what if they then ignored you or got it wrong? Wouldn’t it frustrate you? This is how it is for the majority of children and adults with a severe learning disability, and according to mounting evidence it could be the key to understanding many of their challenging behaviours.
For many decades, the treatment of people with a severe learning disability and behaviour described as challenging has been subject to the so-called ‘medical model’, under which challenging behaviour is seen as ‘part of the syndrome’, a necessary and unavoidable consequence of intellectual disability. It has naturally resulted in treatment methods where the sole aim is to suppress challenging behaviour much like unpleasant medical symptoms might be treated in other complex conditions. Sometimes this approach works, but at what cost? Many people with a severe learning disability and behaviour described as challenging are over-sedated, suffering side-effects of medications they have to take every day, and will have to continue taking for the rest of their lives.
Positive Behavioural Support (PBS) is emerging as the leading alternative. It sees challenging behaviour not as an inevitable characteristic of severe learning disability, but as the product of a larger framework involving psychological, social, and biomedical factors. The grounding principle is that all behaviour is functional – it is always used to either get something we want or to avoid something we don’t. Therefore, it is only when we appreciate the function of challenging behaviour that we can start to root out its primary cause.
For many people with a severe learning disability who have no verbal communication, challenging behaviour is often the most effective way of communicating their needs or desires. When somebody with a severe learning disability uses challenging behaviour, such as throwing things, hitting people or self-harming, their family or carers will understandably stop what they’re doing and rush over to reassure them. As part of an effort to stop the behaviour, they will likely resort to giving rewards such as something to eat, a favourite toy or removal from an anxiety-provoking situation. Children and adults with a severe learning disability learn this pattern of behaviour and outcome and as a result their challenging behaviours grow. The PBS approach aims to improve the general quality of life for people with a severe learning disability and therefore reduce the need for challenging behaviour to be used in the first place.
The initial step in any PBS strategy should be to assess possible causes of the behaviour. Key things to consider are that the person might be in physical pain (how would you feel if you had a painful toothache and no one was taking any notice?), bored, or feeling a lack of control over their lives. Often though, this is easier said than done, especially if the same behaviour is used to achieve different outcomes. For example, head-banging might be used to get a cuddle from mum, to get offered a snack or escape from an aversive situation.
PBS works because it aims to teach people at risk of displaying challenging behaviour new skills to either get the things they want for themselves or communicate their needs more effectively. Ways this can be done are giving the person different coloured tokens to represent things like ‘I want a drink’ or ‘I want to go to the park’, asking them to point to pictures of what they want, or teaching a simplified signing language such as Makaton. The introduction of these systems takes away from the frustration people with a severe learning disability may feel at being unable to say what they want, and also relieves the pressure on family carers having to guess.
Of course, there is no blanket approach suitable for everyone, and PBS is at heart a person-centred way of working. One way it achieves this is through the Functional Behavioural Assessment where specific triggers for one particular person’s challenging behaviour (e.g., loud noises, limited social contact, being unable to go swimming, running, bowling, etc.) are noted and planned for in advance.
Another emerging theme coming from the bridge of psychology with medicine is using what we know about the brain and behaviour to envision what life must be like from the perspective of somebody with a particular type of severe learning disability. Researchers such as Professor Chris Oliver of the Cerebra Centre are combining brain scans with psychological experiments to show how and why people with different types of severe learning disability might be more likely to show challenging behaviours in particular situations. For example, in the ‘Teddy Delay Task‘ where children have a choice of clicking a fast-moving teddy and receiving small fireworks, or waiting for a slower teddy and watching big fireworks, it was shown that children with Lowe syndrome have a specific pattern of executive functioning that makes it much more difficult to wait for things to happen. Being aware of this, families can then adapt their PBS strategy, giving their relative something to do in situations where waiting may be necessary. This will ultimately both make challenging behaviour less likely and improve quality of life for the person.
PBS is now a mainstream treatment framework for the prevention of and response to challenging behaviour in at least four different countries including the UK and the US; Ireland has gone one step further, putting into place legislation which requires the use of PBS in residential or respite care settings. It is making such a radical and beneficial change simply because it recognises people with a severe learning disability as individuals and not medical cases. There are proven results for PBS both in the academic journals and from thousands of family testimonials.
I know from my role at the Challenging Behaviour Foundation, family carers are consistently relieved to finally find a management strategy that not only works but preserves the person, their personality, likes, dislikes and hopes for the future. The challenge now is to convince everyone caring for a person with a severe learning disability of these benefits.
Huw MacDonald currently works for the Challenging Behaviour Foundation, a UK based charity supporting the rights of children and adults with a severe learning disability and their families. He completed his degree in Natural Sciences (specialising in psychology) at the University of Cambridge and spent one year working as a healthcare assistant in the NHS before starting his current role. He has interests in the promotion of health and the development of healthcare policy, particularly around mental health, learning disability, autism and dementia. You can follow him on Twitter @