The following extract from a recent practitioner article from key Studio 3 practitioners highlights best practice in the assessment of self-injurious behaviour for practitioners.
Note: The following is an extract from an internal practitioner article on best practice in the assessment of self-injurious behaviour (SIB). Studio 3 practitioners and other professionals can request the full article from our office. The following extract has been chosen to demonstrate the complexity of self-injurious behaviour, particularly in individuals with learning disabilities or autism, and to dispel some myths about SIB that may affect the assessment process.
Self-injury can be defined as ‘an act initiated by an individual that leads directly to physical harm’ (Cooper et al., 2009). Amongst the population of people with an intellectual disability, the prevalence of self-injury is estimated to vary from 4% to 24% (Deb et al., 2001; Murphy & Wilson, 1985). Soke and colleagues (2016) identified that self-injurious behaviours (SIB) have been reported in more than 30% of children with an autism spectrum disorder (ASD) in clinic-based studies. In their study, which looked at the prevalence of SIB in a large cohort (8065) of children with autism, found that 27.7% exhibited SIB (Soke et al., 2016).
Functions of Self-Injurious Behaviour (SIB)
Research has proposed that SIB can have a number of different functions. For example, sometimes it has a communication function, such as communicating pain or distress to oneself or others (Taylor et al., 2018). It can also serve as emotional regulation, which is one’s ability to modulate their emotional state in order to adaptively meet the demands of their environment. Furthermore, it can function as avoidance or escape from negative internal states rather than the induction of a desired state (Taylor et al., 2018).
Impact of Self-Injurious Behaviour (SIB)
Although SIB is used for a number of functions, the act of self-injury can have significant negative emotional, physical, and developmental impacts on the individual who is self-injuring, as well as the people around them (Summers et al., 2017). SIB can have a profound effect on the quality of life of the individual and those supporting them, as watching someone engage in such behaviour can be both frightening and frustrating (Summers et al., 2017).
Prior to selecting and implementing bespoke proactive and reactive strategies to support an individual engaging in SIB, it is important for both caregivers and practitioners to assess a number of factors associated with the behaviours themselves. This is fundamental to selecting the most appropriate intervention to meet the needs of that individual. Furthermore, it is also important to establish additional factors that could be contributing to the SIB and how it is presenting.
Indicators of Distress
Self-injurious behaviour (SIB) can be ritualistic in nature, meaning that the self-injury follows a pattern or process that can be difficult to disrupt. Additionally, if this process is disrupted, it can cause further distress to an individual, and the SIB may become more significant or last longer. We would encourage those supporting individuals who self-injure to analyse what was happening immediately prior to the SIB occuring, thus identifying any potential indicators or triggers. By assessing the situation prior to when the SIB commenced, we can look at ways of preventing the behaviour from occurring in the first place.
If SIB is high in frequency and intensity, we would recommend investigating the individual in the lead up to the SIB. Looking at their presentation and any changes to their environment immediately preceding the SIB can give us insight into why the individual may be physiologically aroused and engaging in SIB.
Factors Impacting Frequency and Intensity of SIB
Sleep. When assessing SIB, the individual's sleep should be monitored over a period of time in order to identify whether it is disturbed or uninterrupted. When working with an individual who self-injures in their sleep, it is important to assess the intensity of the SIB, as it is often of low intensity in these cases. We must also monitor the SIB and record if the person is waking and self-injuring, or if they are doing it at a low intensity level while asleep.
Health and Well-Being. One factor that can significantly influence the nature, frequency, and intensity of SIB and is sometimes overlooked is the link between an individual’s health and their SIB. If the person you are supporting is showing self-injurious behaviours, it would be important to investigate any underlying medical conditions that could be causing pain or discomfort.
Pain. Research has shown that individuals with an intellectual disability are significantly more likely to experience health problems and associated pain and discomfort than individuals without an intellectual disability (Van Schrojenstein et al., 2000). There are associations between pain, discomfort and self-injurious behaviour. This can be evidenced by self-injury that occurs at the location of the pain. For example, headbanging at the focal points for a migraine.
Comorbid conditions. Many people with autism have comorbid conditions, that is, conditions that co-occur. Common comorbidities include physical conditions, and can cause pain and discomfort for individuals which can, in some cases, further increase SIB.
Migraines. There is evidence to suggest that the location of certain forms of SIB can often be linked with the focal points of migraines, for example, the temples/face etc. Although it sounds paradoxical, SIB to the face and head releases endorphins and can have a numbing effect for pain.
Heart rate. If one’s blood pressure is unusually high, it is an indication that the body may be overwhelmed with physiological arousal.
Temperature. Regularly record the temperature of the individual. Devices that can gauge temperature from a distance may be helpful.
Exercise. Do they engage in any form of physical activity and if so, what is the frequency and intensity of the activity?
Individuals that engage in SIB typically have unusual sensory profiles, meaning their touch, taste, smell, hearing and vision is often sensitive to particular stimuli. As each person will react differently to stimuli due to individual differences, it is important that various factors such as heat, light and noise are examined for sensory sensitivities. In doing so, such sensory assessments will nearly always identify sensory domains which are both positively and negatively reinforcing. This means that they can be removed or provided throughout the day to help reduce anxiety and stress. The use of smells that an individual likes or responds to, or providing objects to grip for sensory pressure feedback, are just a few examples of ways to reduce anxiety or stress.
Another factor that could be associated with SIB is traumatic life experiences. It is important to consider this when investigating SIB. Self-injury can often be an outlet to deal with strong emotions as a result of previous trauma, with individuals reporting that it can relieve some related anxiety and tension. Therefore, it is important that we understand any traumatic life experiences an individual may have gone through when assessing their SIB. Through SIB, individuals who have experienced abuse could be re-enacting the abuse perpetrated on them (Noll et al., 2003). Other researchers, such as Yates (2004), theorise that SIB acts as a maladaptive coping mechanism following abuse.
In order to investigate the effect that traumatic experiences may have had on the supported individual, completing a questionnaire, such as The Adverse Childhood Experiences Questionnaire, could give some insight. This can be completed by either the individual or their caregiver and would give a much greater insight into how the early life experiences of that individual might be impacting them today.
There appears to be a significant but modest association between life stress and self-injury (Liu et al., 2016). Individuals who self-injure may do so as a method of coping with stress. Hurting themselves is often a way for them to control their feelings of stress, anxiety, tension, sadness, and loneliness, as well as alleviating feelings of anger, punishing oneself, or to get help from or show distress to others. It is thought that self-injury can activate different chemicals in the brain which relieve emotional turmoil for a short period of time.
Numbness is a common symptom of anxiety and stress. Many individuals experience such numbness when they are chronically stressed. SIB can often be used to escape this feeling of numbness and to allow the individual to ‘feel something.’
Part of the assessment process for SIB needs to identify what stress management skills are already in place for the individual. As previously mentioned, self-injury might be used to cope with a number of stressors, hence managing an external factor could lead to a potential decline in the occurrence of SIB. This is supported by evidence that reports a strong association between stress and coping, stating that high levels of coping are needed for high levels of stress in order to mitigate negative impacts (Lazarus & Folkman, 1991). It is therefore fundamental to the well-being of individuals that we support them by equipping them with positive coping strategies.
When we consider the high levels of stress, sensory sensitivities across several modalities, and challenges with social communication that autistic individuals who engage in SIB endure, it is essential that their environment is one that is autism and trauma friendly, and one that meets their needs - particularly in terms of sensory input. Lazarus and Folkman’s (1984) description of a transactional model of stress places emphasis on the interaction between an individual and their environment. It is therefore important to be aware of the significance of the transactional nature of stress when examining SIB (McDonnell et al., 2015). Developing a stress support plan can help to improve an individual’s well-being. However, in order to develop a stress support plan, we must first assess and identify the person's stressors and coping mechanisms. By understanding components of the individual’s environment and certain interactions that may be increasing their levels of stress, as well as understanding some of the coping mechanisms that are utilised by that individual (including SIB), we can develop greater insights into how best to support the person in reducing their overall stress.
Consider the impact of temperature and barometric pressure on the internal and sensory world of the person. A sudden change to these may provide unpleasant stimulation and result in a stress response. Although these environmental factors are more difficult to control, coping strategies and positive sensory input may minimise the impact of these factors.
For Staff and Families - Observing and Assessing Our Own Responses to SIB
The stress of witnessing and supporting someone who is engaging in self-injurious behaviour also needs to be considered, particularly within the context of Lazarus and Folkman’s (1984)’s transactional model of stress. Emotions of all kinds can be contagious, and the effects of increased stress of the supporter on the individual engaging in SIB is an important factor to consider. When assessing the occurrence of SIB, a significant factor that is often overlooked is the stress of staff and family members themselves.
Witnessing someone engaging in self-harm can be a distressing experience for caregivers and practitioners alike. It is important during these episodes of self-injury that we do not let our own responses influence an individual’s ability to self-regulate. When a caregiver is struggling to regulate their own emotions, it can become increasingly difficult to support their loved one to self-regulate. Oftentimes, when an individual is engaging in SIB, they are significantly dysregulated, and they may be dependent on their environment or the people supporting them to help with regulating their emotions. This can be described as co-regulation, which Thompson (1994) describes as ‘the extrinsic and intrinsic processes responsible for monitoring, evaluating, and modifying emotional reactions.’ That is, the internal and external factors that contribute to emotional regulation. One of these extrinsic factors is the influence of others, and how they are presenting in the individual’s environment. A caregiver’s own stress can have implications for the level of care they are able to provide in such an instance (Cudré‐Mauroux, 2011). If a caregiver responds with stress or fear to an individual’s stress response, such as self-injury, this can interfere with how a caregiver supports this person to regulate their emotions (Gulsrud, Jahromi & Kasari, 2010).
Individuals with intense SIB often rely on support from their family members. It is important to fully understand that the episodic intensity of SIB can have a huge emotional impact on all family members, and can impact the level of support they are able to provide. In order to inform interventions at a family level, it may be useful to assess the social support network of the families of individuals who engage in SIB. One way of assessing this is to use the Interpersonal Support Evaluation List (ISEL) - General Population, which is freely available online.
Positive Moments When the Individual is Not Engaging in Self-Injurious Behaviour
Although it is important to monitor SIB, caregivers should also record positive moments that they observe or experience with the person they support. With this in mind, we recommend assessing methods of recording SIB and noting whether or not there is record keeping of positive moments, as this can be useful in informing interventions.
Written by Marion O’Shea, Hannah McAuliffe, Karolina Morgalla and Paul Burbage
The above extract demonstrates some of the key areas of focus when supporting an individual who engages in self-injurious behaviour. To access the full article, contact firstname.lastname@example.org or call 01225 334 111. For more information about self-injurious behaviour and self-harm, resources are available on our website here.
Cooper, S. A., Smiley, E., Allan, L. M., Jackson, A., Finlayson, J., Mantry, D. et al. (2009). Adults with intellectual disabilities: prevalence, incidence and remission of self-injurious behaviour, and related factors. Journal of Intellectual Disability Research, 53, 200-216.
Cudré‐Mauroux, A. (2011). Self‐efficacy and stress of staff managing challenging behaviours of people with learning disabilities. British Journal of Learning Disabilities, 39(3), 181-189.
Deb, S., Thomas, M., & Bright C. (2001). Mental disorder in adults with intellectual disability. 2: the rate of behaviour disorders among a community-based population aged between 16 and 64 years. Journal of Intellectual Disability Research, 45, 506-514.
Gulsrud, A. C., Jahromi, L. B., & Kasari, C. (2010). The co-regulation of emotions between mothers and their children with autism. Journal of autism and developmental disorders, 40(2), 227-237.
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Soke, G. N., Rosenberg, S. A., Hamman, R. F., Fingerlin, T., Robinson, C., Carpenter, L., ... & DiGuiseppi, C. (2016). Brief report: prevalence of self-injurious behaviors among children with autism spectrum disorder—a population-based study. Journal of autism and developmental disorders, 46(11), 3607-3614.
Summers, J., Shahrami, A., Cali, S., D’Mello, C., Kako, M., Palikucin-Reljin, A., ... & Lunsky, Y. (2017). Self-injury in autism spectrum disorder and intellectual disability: Exploring the role of reactivity to pain and sensory input. Brain sciences, 7(11), 140.
Taylor, P. J., Jomar, K., Dhingra, K., Forrester, R., Shahmalak, U., & Dickson, J. M. (2018). A meta-analysis of the prevalence of different functions of non-suicidal self-injury. Journal of Affective Disorders, 227, 759-769.
Thompson, R. (1994). Emotion regulation: A theme in search of definition. Monographs of the Society for Research in Child Development, 59(2–3), 25–52.
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