Beverley Samways argues for a broader perspective when addressing self-harming behaviours for those with learning difficulties.
How we think about behaviour
I was with friends and feeling thoughtful as the waiter passed me a latte in a tall, slim glass precariously balanced on a saucer. I reached across the bar and took it with one hand, felt how unstable it was, but somehow couldn’t find the energy or coordination to re-balance it: instead I just let it go with a flick of my hand, splattering the latte wildly as the glass clattered across the tiled floor. I looked at the coffee river in the now silent café.
‘I just threw that’, I announced.
The waiter paused, before replying mildly, ‘did you want another coffee?’
As I sat, slightly bewildered, with my friends drinking my second coffee, they moved quickly from gently teasing me to asking me what had happened. Together, we worked out that my coffee-throwing had a connection to an overwhelming experience from several months ago. The experience had sapped my energy, knocked me off balance, and generally made a mess – a bit like the coffee. As we talked, I felt better, whilst remembering
I still had some work to do on processing the experience.
Now imagine if my friends had tried to explain my behaviour only in relation to what had happened immediately before: Maybe I didn’t like the coffee? Maybe I didn’t like that café? Maybe the waiter had been mean to me? Imagine if the only place to look for an explanation for my behaviour was right there in that moment, rather than thinking about my emotions in connection to my past and present experiences.
How we think about self-harm
Self-harm is a prolific concern right now, with around one fifth of fifteen year olds thought to have self-harmed at some point. Self-harm is most commonly related to overwhelming emotions in response to adverse experiences. The overwhelming emotions typically include depression, anxiety, anger, shame, self-hate and hopelessness. These are often a response to adverse experiences that include the loss of a loved one, bullying, academic pressure, familial tension, abuse and trauma. Assessments and treatment for self-harm consider personal factors such as the person’s social situation, state of mind, experiences past and present, and their emotions.
However, if the person hurting themselves has a moderate, severe or profound learning disability, a completely different approach is adopted, starting with giving it a different name, usually ‘self-injurious behaviour’ or ‘self-injury’. Self-injury is usually considered a biological issue or a behavioural issue. The biological considerations ask if the self-injury might be the product of a person’s disability. Some syndromes have self-injury correlated strongly with them, such as Lesch Nyhan; self-injury is also a behaviour strongly associated with autism, with around fifty percent of people with autism displaying self- injury at some point.
Self-injury is also considered from a behavioural perspective, usually under the broad umbrella of ‘challenging behaviour’. The behavioural approach considers whether self-injury is a way for the person to communicate something functional: a physical pain; a sensory need; a desire to escape or avoid something; a need for attention; or to gain a tangible goal, such as food, drink or a preferred activity.
These two dominant considerations have impacted practice considerably, so that if a person is displaying self-injury at a concerning level, it is typically responded to biologically through medication and behaviourally with a behaviour plan. Behaviour plans generally require behaviour charts, and behaviour charts typically ask one big question:
What happened just before and just after the person hurt themselves?
Or what were the ‘antecedents and consequences’ of the behaviour? This is based on the assumption that a behaviour is ‘triggered’ by an event preceding the behaviour – and that the behaviour was used to achieve what happened immediately after the event.
For example, Joel is sitting in the lounge. Someone turns on the TV to EastEnders. Joel starts to hit his head. A staff member supports him to his bedroom where he is able to calm down.
What triggered Joel’s self-harm? The sights and sounds of the TV.
What did Joel’s self-harm achieve? Escape from the sights and sounds of the TV.
This approach has many benefits (and it is a far cry from our not-so-distant history of institutionalised care, with interventions including over-medicating and aversive therapies). This functional approach is centred around Joel’s experiences and tries to make sense of Joel’s behaviour and respond accordingly. However, it exclusively focuses on the moment in time: it seeks to make sense of self-injury in relation to what happened just before and just after Joel hurt himself.
And herein lies the problem
The small amount of research which asks people with learning disabilities about their own self-harm does not reflect this ‘here and now’ approach. Here are the three things that people with learning disabilities most commonly express in relation to their own self-harm:
Emotional regulation
Emotional regulation is about the need that we all have to work at regulating our emotions – we all feel our emotions going up and down to varying degrees, and we all have to learn to tolerate or manage the difficult feelings of loss, anger, disappointment, fear, etc. These emotions have to be processed or ‘digested’, and we often need help to do this. People with learning disabilities who self-harm have reported that they experience emotions building up inside them, like an internal pressure, leading to them becoming overwhelmed. This mirrors the experiences of people without learning disabilities who hurt themselves.
Adverse experiences
People with learning disabilities also report that adverse experiences are related to self-harm, including experiences of abuse and loss. People with learning disabilities are at greater risk of adverse experiences in every category: they are more likely to have experienced stigma and discrimination; they are at greater risk of abuse; they are more likely to find difficult experiences traumatic; and when they experience loss, they are less likely to have the symptoms of grief recognised as such. Just as people without learning disabilities make connections between adverse experiences and self-harm, so do people with learning disabilities.
Articulating emotions
People with and without learning disabilities who self-harm report that they have difficulty articulating emotional experiences. Complex emotions, such as loss, disappointment, stress, anxiety and anger, can be difficult to find words for; this is sometimes called alexithymia. For those with learning disabilities who have limited communication, this might seem like a straight forward connection. However, people without learning disabilities who self-harm similarly report difficulty articulating what an emotion is and what it feels like. Therefore, difficulties understanding and explaining emotions is a factor for self-harm for people regardless of learning ability.
Others factors for self-harm
It is well documented that people with learning disabilities sometimes resort to extreme self-injury to both mitigate and communicate severe pain, particularly internally experienced pain, such as dental and ear pain. We also know that people with learning disabilities who experience sensory hypersensitivity or dysregulation (including issues with the internal proprioceptive and vestibular senses) sometimes self-injure to try to regulate their senses. Self-injury is also commonly a way for someone with learning disabilities to communicate a need, whether it is to avoid something aversive or gain something needed.
However, the reports of people with learning disabilities who self-harm tell us that – alongside physical pain, sensory issues, and established behavioural functions – overwhelming emotions connected to adverse experiences should also be considered.
In short – just as I threw my coffee across a café because of something that happened six months ago – so unusual behaviour needs to be considered not just in relation to what happened immediately before and after the behaviour, but in relation to a person’s life experiences and associated emotions.
The principles behind functional analysis are inarguable – self-harm undoubtedly serves a function for each individual. However, the focus on ‘antecedents, behaviour and consequences’ – what happens before, during and after the behaviour – limits possible causes of self-harm to immediate factors only. The evidence from self-reported reasons for self-harm from those with learning disabilities is that the possibility of overwhelming emotion in relation to adverse experiences should also be considered.
