1. Hidden Pain? People with learning disabilities who self-injure Pauline Heslop Norah Fry Research Centre, University of Bristol Fiona Macaulay Bristol Crisis Service for Women

2. 2 What do we already know?  People without learning disabilities Research considering their views exists Self-injury has a clear function It is largely used as a coping strategy for dealing with intense emotional distress Interventions: usually counselling or therapies, to enhance self-esteem / develop a repertoire of coping skills  People with learning disabilities Little or no research considering their views Self-injury generally understood within a biological framework Regarded as ‘challenging behaviour’ Interventions: often behavioural responses and sometimes medication

3. 3 The purpose of the research  To find out more about the experiences of people with learning disabilities who self-injure, and their carers/supporters  To explore in what ways they have been supported by the services and professionals with whom they are involved  To identify ideas, and then produce resources, for training and policy development

4. 4 Research participants 25 people with learning disabilities (104 visits) Men and women Ages 14 – 65 (mean age = 34 years old) England, Scotland, Wales and N. Ireland Range of types of self-injury Range of circumstances (own home – secure unit) Family members 7 linked to participants, 5 non-linked Professionals 21 linked to participants, 9 non-linked

5. 5 What people with learning disabilities say about why they self-injure 1. The circumstances leading up to self- injury 2. The feelings a person has before they self-injure 3. The particular functions that self- injury serves

6. 6 The circumstances leading up to self-injury External factors Being in disempowering circumstances Lack of control within living environment Interpersonal factors Being bullied Arguments Internal factors Physical health issues Memories of difficult past experiences

7. 7 The circumstances leading up to self- injury: External factors Being in disempowering circumstances Not feeling listened to Being told off Being told what to do Too many demands and not enough support Being treated like a child People talking about you

8. 8 The circumstances leading up to self-injury: External factors Lack of control within living environment Other residents Noise/too much going on Lack of autonomy Not much to do

9. 9 The circumstances leading up to self-injury: Interpersonal factors Being bullied Physically Picked on Name calling Making fun of person Being laughed at

10. 10 The circumstances leading up to self-injury: Interpersonal factors Arguments  Arguing with someone else  Overhearing other arguments

11. 11 The circumstances leading up to self-injury: Internal factors Physical health issues Physical illness Mobility impairment Tiredness, exhaustion

12. 12 The circumstances leading up to self-injury: Internal factors Memories of difficult experiences in the past Abuse Bereavement

13. 13 The circumstances leading up to self-injury People with ld Disempowering circumstances Lack of control (in living environment) Interpersonal issues Internal – physical health / memories of past experiences

14. 14 The circumstances leading up to self-injury People with ldFamily carers Disempowering circumstances Lack of control (can’t do what wants to do) Lack of control (in living environment) Disempowering circumstances Interpersonal issuesUncertainty/ change Internal – physical health / memories of past experiences

15. 15 The circumstances leading up to self-injury People with ldFamily carersProfessionals Disempowering circumstances Lack of control (can’t do what wants to do) Uncertainty/ change Lack of control (in living environment) Disempowering circumstances Lack of control (can’t do what wants to do) Interpersonal issues Uncertainty/ change No particular reason - biological basis Internal – physical health / memories of past experiences

16. 16 The feelings a person has before they self-injure People with ld Angry Frustrated Sad, depressed, low Upset

17. 17 The feelings a person has before they self-injure People with ldFamily carers AngryFrustrated Agitated Sad, depressed, low Angry UpsetAnxious

18. 18 The feelings a person has before they self-injure People with ldFamily carersProfessionals AngryFrustrated AgitatedAnxious Sad, depressed, low AngryUpset AnxiousSad, depressed low

19. 19 The function or meaning of self- injury People with ld Expression of emotional pain Suicidal action / thoughts Legacy of difficult feelings from the past Control Release/coping mechanism

20. 20 The function or meaning of self- injury People with ldFamily carers Expression of emotional pain Suicidal action / thoughts Attention-seeking / to get a reaction Legacy of difficult feelings from the past A response to change ControlThe need to communicate something Release/coping mechanism

21. 21 The function or meaning of self- injury People with ldFamily carersProfessionals Expression of emotional pain Attention-seeking / to get a reaction Suicidal action / thoughts Attention-seeking / to get a reaction The need to communicate something Legacy of difficult feelings from the past A response to change Self-stimulation / habit ControlThe need to communicate something Expression of emotional pain Release/coping mechanism Some changing views

22. 22 Conclusions  There are external, interpersonal and internal factors that might lead up to a person self-injuring  People with learning disabilities, family carers and professionals may understand these factors differently  Family carers and professionals need to acknowledge anger on the part of people with learning disabilities  Bullying, the legacy of abuse and dealing with one’s emotions all need addressing as a matter of urgency  Difficult feelings ought not be dismissed as ‘attention-seeking’

23. 23 Messages from people with learning disabilities to supporters  Better communication  Better attitude towards us  Need for practical support too  Help to learn new strategies for distraction  Help to calm down  Access to support when needed

24. 24 For further information…  Fiona Macaulay Bristol Crisis Service for Women PO Box 654 Bristol BS99 1XH Fiona.bcsw@btconnect.com  Pauline Heslop Norah Fry Research Centre University of Bristol 3 Priory Road Bristol BS8 1TX Pauline.Heslop@bristol.ac.uk