When I started working in the field of health and social care in the early 1990’s, I joined a team in a lovely residential service. Our clients were aged from 18 to their early 60’s and had a range of diagnoses including various learning disabilities, autism, acquired brain injuries, mental illness, and plenty of other co-occurring conditions, too, such as epilepsy, physical disabilities, mutism, and many more.
The single thing all clients shared was a label of “challenging behaviour.” Back in those days, residential services were frequently found in very grand, old mansions in the countryside – surrounded by beautiful, spacious grounds where the residents could experience peace and quiet and space away from neighbours.
Unfortunately, this didn’t help them become valued members of their communities, and it also encouraged service providers to put on many of the activities that the residents could have enjoyed with peers in the wider community. Ironically, and quite absurdly, the shared label of “challenging behaviour” implied compatibility for living together.
Overall, they were fun times, and days were spent ensuring people led the best lives they could. The “challenging behaviour” we observed included a range of physical, verbal, and sexual inappropriateness, aggression, and risk.
Staff would feel we’d had a “good shift” when we successfully managed to keep everyone actively engaged in enjoying themselves, learning new skills, and not hurting themselves or other people.
Our aim was to be one step ahead of potential challenging incidents, and we did our best to keep the environment calm and anticipate everyone’s needs. On occasions where people were physically aggressive, we would intervene as gently and as best we could by diffusing, deescalating, and distracting them.
At that point, my colleagues and I had not received formal training in managing “challenging behaviour,” so new staff would learn from more experienced team members.
I learned how to hold people down on the floor until they calmed down (or gave up, more likely) by copying more experienced colleagues. This feels shocking and abusive these days, and so it should!
The requirement for professional training for managing these challenging incidents was essential. The people we supported needed to be kept safe and required consistency in how they were cared for, and the staff needed to be supported and accountable for their actions.
Personally, I have used both Studio 3 and PBS (positive behavior supports), two methods of working with “challenging behavior,” over the past 25+ years. My training included learning about the law, about least restrictive practice, about descalation techniques, slow and fast triggers, behavioural analysis, physical interventions, and much, much more.
Virtually every practitioner I have met has had other people’s best interests at heart. Almost everyone who goes into this line of work does so in order to make a positive difference.
As time has moved on, I have felt more and more uncomfortable about the concept of “challenging behaviour.” It’s not an add-on, or a trait or characteristic. I hear people say that so-and-so has “got challenging behaviour” in the same way they would say he has got blonde hair! The term is too broad in my opinion and often avoids exploring what the root cause of the behaviour is for that particular person, and in those particular circumstances.
I am not entirely comfortable with the term “behaviour,” either. Behavior implies a level of choice and manipulation that is frequently not there. I believe that almost without fail, a person’s behavioral response is proportionate to the experience they are having.
When I first started analysing behaviour at work, like most of my colleagues, I would look for triggers to try and suss out what caused the behaviour. Then, we could remove the triggers if possible so it didn’t happen again. Or, we would teach the person better coping and emotion regulation skills. This was driven by a desire to make things better for the people we supported.
But both these approaches may fail to recognise the bias of the observer. It may be useful to consider this through the concept of affordances. Affordances are neither in the environment nor in the perceiver but instead derive from the relationship between perceiver (individual) and what is perceived (environment). Affordances may be experienced by the perceiver as positive or negative, they are not inferred or deduced but are perceived directly and derive from the interaction between the individual and environment.
The affordances that an environment offers to one individual may be quite different from the affordances that the same environment offers to another individual. On a most simple level, you could be taking a walk up a hill with a friend and you find it refreshingly exhilarating, but they find it exhausting – same hill, different affordance.
In the context where we are thinking about a person’s behaviour in a particular setting, affordances may be physical – e.g. they perceive the person stood in the doorway as a threat and barrier to their escape, whereas another person may perceive the person stood in the doorway as a welcome guest they are excited to see. Affordances may also be cultural, social/communication, and sensory.
Sensory affordances may play an important and underestimated part in the interpretation of “challenging behaviour.” In fact, they may cause us to reconsider the very language we use to describe when people demonstrate their distress in this way.
From a sensory affordance point of view: to you, a slamming door may be a slight interruption that is tolerable and inconsequential. Whereas to me, with my different sensory processing (due to autism), it is as loud as a firework going off in the room– and my body and brain react accordingly. Other people may perceive it differently again.
Most people using services for those labelled as challenging have nervous systems that respond differently to sensory information. This may be due to trauma, neurological differences, genetic conditions, acquired brain injuries, anxiety, and learning disabilities. It is unlikely that a staff member is processing the world in the same way as the people they are supporting, simply because each of us is different. My recent work with my colleagues in Autism Wellbeing describes Sensory Trauma and explores these ideas more fully.
The implications of sensory affordances and Sensory Trauma when analysing challenging incidents are potentially significant. If we don’t experience the same physical and sensory affordances in the environment we share with the people we are supporting, then it is easy to overlook what is causing their distress.
On many occasions, I have heard staff state that a client “kicked off for no reason” or “had no identifiable trigger” in response to an incident. If we were to view the environment from the perspective of the person we were supporting, then we may begin to identify those reasons and triggers.
Often, in the absence of definable external triggers, we will explore internal triggers and consider whether the person’s “challenging behaviour” comes from illness, pain, or an unpleasant emotion they were feeling inside themselves.
Those of us who work with people who don’t use speech, or who have interoceptive processing differences that result in them experiencing pain or emotions in muted or intensified ways, will appreciate the added challenges we face when trying to do our best to support them and work out how they are perceiving the world.
People who are labelled as having “challenging behaviour” are often given an additional label of having complex needs. This sometimes means that the jury is out on “what is wrong with them.” That is an unashamedly offensive way of putting this, but let’s consider for a moment what we mean when we refer to people as complex.
Usually, people with “complex needs” have had several professionals and clinicians observe, assess, and work with them. They typically have more than one diagnosis, or there are contradictory diagnoses, or diagnoses have changed over time, or a firm diagnosis is undecided. The concerning aspect of this label is that it places the onus on the individual and locates the issue within their body or brain. It is almost like gaslighting them.
How can we do things differently?
Many of us who work within health and social care with people labelled as complex or challenging will have first-hand experience of success with the people we have connected with and built relationships with, that on paper have histories that sound frankly terrifying! Those people that are not complex to us, simply because we “get” them.
Their complexity is rarely lost because a diagnostician has had a Eureka moment and found the correct label for them. They become “less complex” because of that connection, and that relationship we build. They become less challenging because they find they can connect with another person who can begin to see the world through their eyes.
Our shared environment may not give the same affordances to each of us, but we realise that we are perceiving it differently.
We empathise – and that doesn’t mean we necessarily feel what they feel. It means we find a way of connecting with them so that they are not alone. We may never see the world how they see the world – we may never identify all their triggers – particularly as affordances change and all people are multidimensional. What causes any of us distress today may not tomorrow.
Positive outcomes are more likely to be achieved by relationships than by interventions. It is good practice to follow support plans – and we know that consistency is important when teams of people are supporting individuals.
But procedures followed to the letter, without a disposition of kindness and a desire to connect are unlikely to create lasting changes for people. They may well ‘manage’ challenging incidents, but they fail to recognise that people need to grow and thrive regardless of what their potential IQ, “mental age,” or “functioning ability” may be.
Frequently, we aim to remove triggers. Where we can’t identify them or remove them, we distract people or divert their interest elsewhere or encourage them to develop better coping mechanisms. I wonder whether we need to consider affordances again here.
If we are not recognising the distress someone is experiencing because we are focusing on how their distress manifests and are calling it something else (challenging behaviour, for instance); or because we are simply not perceiving their distress as valid because it is a different reaction from the one we would have given in those circumstances. In the latter scenario, we are denying people the opportunity for growth.
We have moved away from “doing things for” to “doing things with” in many areas of social and health care support. We no longer provide hotel type services to people living in care homes. We use active support or other methods to engage them as much as possible in every aspect of their daily life – helping to make breakfast or get washed and so on, so that their autonomy is increased and their potential and aspirations realised.
So why are we not adopting this empowerment approach so readily with people’s wellbeing? We teach personal care by breaking tasks down into smaller, more achievable steps; yet rarely do we break down self-care in this way.
In 2015, I conducted a piece of postgraduate research into the effectiveness of outcomes measuring tools (the Recovery Star) in residential services for people with a severe and enduring mental health condition. I discovered that people tended to make greater progress in domains such as personal care, daily living skills, work, and other practical, task-based activities, but much less progress in managing their own mental wellbeing.
As staff, we frequently intervene to deescalate and distract people or prompt them to use the coping strategies ‘prescribed’ by their clinical teams.
Are we denying some people the opportunity for growth and connection because we are not validating their lived experience as well as failing to seize the opportunity to see the world from their perspective? Imagine how empowering it could be if we modelled effective coping strategies to people who were distressed instead of offering them a cup of tea (or a cigarette, as it was back in the days when I started work!)
I believe that most people find ways of regulating themselves. It is natural for all humans to strive to be in a state where they can thrive. When we work with people who have a range of social, communication, neurological, or cognitive support needs, we observe unique and inventive ways that people find to do this.
Some of these people don’t use speech as communication, yet demonstrate clearly what it is they need to do to feel regulated. Sadly, interventions sometimes seek to change these behaviours for more ‘appropriate’ ones, or we misinterpret self-soothing behaviour as a sign of distress and not as a sign of a successful coping strategy – particularly if we view it from our own perspective and consider what it may feel like to us if we did it.
A focus on communication, connecting, co-regulation, and validating the lived experience of those we support is much more likely to be effective in reducing the distress people experience. This will then reduce the number of times we see this distress manifested as “challenging behavior.” Validating other people’s unique self-soothing strategies will also reduce the stigma many people face.
I no longer see “challenging behaviour” in the way I used to. I do not believe that “challenging behaviour” is simply about a person communicating that they wish to avoid things they dislike, or gain the things they do like. It is about so much more than communication.
All people are complex – and not in a pathologised way. We each experience the world differently and we respond in ways that are proportional to our experiences. What I used to call “challenging behaviour” is complicated, too. We have created social and health systems and cultures where we – the staff; the ones with the power— have interpreted people’s actions in particular ways and then responded according to our interpretations.
We create many of the challenges we face along with the institutions and institutionalised behaviour found within them. We have created ways of working that reinforce approaches based on certain behavioural ideologies to the exclusion of other more effective approaches.
It is not as simple as replacing one ideology or way of working with another – the approach will remain superficial. We need to recognise that we are complex people working with other complex people. We all perceive the world differently. There are aspects of behaviourism that have value when supporting people. There are aspects of other sciences, ideologies, and philosophies, too.
We need to ensure that staff are accountable for the way they interact with other people – and that the approaches they use are truly person centred and measurable. As a senior manager who has worked with thousands of colleagues, I am driven to select staff based on their attitudes and values. It is easier to train someone in a new skill than to support them to change their attitude.
First and foremost, I need to know that the people I support feel safe and are well-supported. I need to be able to help my staff team develop skills and reflect on the world from the perspective of the people they are supporting. I need to assure commissioners, families, and individuals in my care, that the fees paid for their support are spent fairly and therapeutically. And I need to be able to demonstrate this by describing the methods I use and the outcomes that are achieved.
But rather than focusing on which is the best approach for achieving this, let’s shift the focus onto connecting meaningfully with people. If we can seek to connect with every person we meet and use the skills we have to support them in a way that works for us both, then relationships will be built where we see people first and foremost, and not behaviours or complexities.