We are delighted to publish our new comprehensive guide for parents on ‘Self-injury in children with intellectual disability’ in partnership with the Cerebra Network for Neurodevelopmental Disorders.
For children with intellectual disabilities and their parents and carers, self-injury is a really important issue. Cerebra Network Director Professor Caroline Richards, one of the authors of the guide, explains:
“Self injurious behaviour (SIB) is common in children with intellectual disability and is a clinical concern for families and clinicians. Our brand new SIB guide brings together the latest evidence based practice in an informative and accessible format, to support assessment and improvement in SIB for people with intellectual disability”.
Caroline and the team behind the guide explain more in the video below. You can view and download all of the Self Injury resources here.
What is self injury?
Self-injury refers to non-accidental behaviours that are initiated by a person themselves that have potential to lead to physical harm. Some examples of behaviours that would be considered self-injury are head banging, hand biting or scratching. These behaviours can sometimes also be called ‘challenging behaviours’ because of the impact they can have on people’s wellbeing.
What is the risk?
For children with intellectual disabilities the estimated prevalence of self-injury (or how common self-injury is) is between 4% – 36%. Children with specific genetic syndromes, a more severe level of intellectual disability, children who are autistic and impulsive or who show repetitive behaviours appear to be at greater risk of showing self-injury. However, it’s really important to note that this does not mean self-injury is inevitable for any child with intellectual disability. This guide aims to provide parents and caregivers with some helpful strategies to further understand and potentially reduce self-injury.
What does the guide cover?
‘Self injury in children with an intellectual disability’ has been written to help parents and carers of children with intellectual disability to understand what self-injury is, what can cause self-injury and which interventions may help to reduce self-injury. The comprehensive guide is designed for parents who are interested in developing an in-depth understanding of self-injury. It focuses on children with profound to moderate intellectual disability, who may also have co-occurring diagnoses like autism or a genetic syndrome.
The guide is divided into five-parts:
Part One: describes what self-injury is and how common it is.
Part Two: focuses on the characteristics of children who may show self-injury.
Part Three: explores some of the potential causes of self-injury.
Part Four: gives guidance on assessments for self-injury that may be helpful for understanding the behaviour.
Part Five: discusses some interventions that may help to reduce self-injury for some children.
The Guide also includes a glossary of key terms and a list of useful resources.
What other resources can help?
The guide is supported by an infographic explaining the PEACE acronym– a useful starting point for parents whose child shows self-injury. It helps parents to establish the possible cause of the behaviour before moving onto interventions:
The first step to assess anyone showing self-injury is to consider if they may be in pain (P), through observations and medical assessments where appropriate. Following this, parents and caregivers should work their way through the remaining areas of environment (E), anxiety (A), control (C) and exhaustion (E).
The Cerebra Be Well Checklist is a brilliant resource that can help parents or caregivers go through this process in a structured way. The Self Injury Guide also draws on the information in other key Cerebra guides: Anxiety, Cognitive Difference, Pain and Sleep.
You can view and download all of the Self Injury resources here.
About the Cerebra Network
The Cerebra Network is an innovative and ambitious project connecting institutions across the UK to produce research that improves the lives of people with neurodevelopmental disorders and their families. The academic team integrates knowledge, expertise, and resources across four leading institutions to deliver greater insight into neurodivergent children and children with rare and complex syndromes. Their research specialises in four key areas of autism, mental health, sleep, and behaviours that challenge.
