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Why do people with learning disabilities say they self-injure?

Pauline Heslop, Norah Fry Research Centre, University of Bristol
Co-author(s): Fiona Macaulay

Powerpoint presentation


Research considering the views of people without learning disabilities suggests that for them self-injury has a clear function and is largely used as a coping strategy for dealing with intense emotional distress. These individuals advocate the use of counselling or therapies, to enhance self-esteem and develop a broad repertoire of coping skills.

Traditionally, self-injury by people with learning disabilities has been understood within a biological framework (i.e. that it is primarily linked to genetically-determined syndromes or to disrupted neurotransmitter pathways). It has been regarded as 'maladaptive' or 'challenging behaviour', and often managed by behavioural responses and medication. There is very little first-hand understanding of why people with learning disabilities might self-injure.

This presentation will outline some of the early findings from a UK study which is asking 25 people with learning disabilities (age 14 and over) about their self-injury. Up to five semi-structured qualitative interviews were carried out with each research participant. Some of the interviews were conducted verbally; some used signs (e.g. Makaton), symbols, pictures or materials designed particularly for the research project. With their consent, interviews were also carried out with a family member and professional supporting them.

The interviews collected rich information from the perspective of people with learning disabilities about a range of issues related to their self-injury. The particular focus of this presentation will be what the people with learning disabilities have said about why they self-injure.

Self-injury served a wide range of functions for the people with learning disabilities. All respondents were able to identify some feelings that they experienced before and after self-injuring, and circumstances that might make them want to self-injure. Most were also able to identify times in their lives when their self-injury had been exacerbated or reduced in frequency. Listening to people with learning disabilities who self-injure to understand the feelings associated with it and the functions that self-injury serves for them, and working with them to identify more supportive and consistent interventions is one positive way forward. Another, which is relevant for anyone supporting people with learning disabilities, is to develop emotional literacy in people with learning disabilities from an early age, so that they have a range of coping techniques at their disposal when faced with difficult feelings, stress or distress.

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