This article was contributed by Cerebra

Cerebra is a national charity striving to improve the lives of children with neurological conditions through research, information and direct on-going support. Its aim is to provide information and support services to parents benefitting the lives of the children that they care for.

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Self-injury and children with intellectual disabilities: what parents should know

Photo: Benjamin Watson 

Cerebra is a charity supporting families of children with brain conditions. Here is its advice for parents to help their children cope, and links to finding further help online

What is self-injury?

Scratching, biting, hitting or banging the head against objects is common behaviour in children with an intellectual disability. 

How common is it?

Roughly 17% of children with severe intellectual disability self-injure in one way or another. About 1 in 20 do so in a way that is considered severe.

Self-injury increases until the age of about 30 and then starts to decline. This could reflect the fact that young children's self-injury doesn't cause as much obvious harm and so goes unnoticed and unreported; or it may be that children are indeed more likely to self-injure as they get older. Research shows that once self-injury begins it can be very persistent.

What are the risk factors and causes?

The following are associated with an increased risk of self-injury:

  • Genetic disorders (e.g. Lesch-Nyhan, Cornelia de Lange, Cri du Chat, fragile X, Prader-Willi and Smith-Magenis syndromes).
  • A greater degree of intellectual disability.
  • Autism spectrum disorder (ASD).
  • Repetitive behaviours (e.g. hand flapping and rocking).
  • Impulsivity
  • Low mood

Children with intellectual disability may self-injure for a number of reasons. One common cause is pain or discomfort. Children with severe intellectual disability are more likely to experience health problems, such as epilepsy, osteoporosis and gastrointestinal, skin, respiratory and cardiovascular disorders; and many struggle with communicating pain so their health problems may go undetected. Children with an untreated health issue sometimes self-injure in an attempt to relieve the discomfort.

The risk of self-injury and other harm means that it is important for parents and professionals to remain alert for signs of health problems. If you notice changes in your child’s mood, sleep, eating, sociability, facial expression, activity or other similar characteristics, it might be worth speaking to a GP.

Children with intellectual disability may also self-harm if they think they will get some sort of reward. If a child associates the behaviour with sympathy, attention or the removal of something unpleasant, they may be more likely to do it again. Some children self-injure because they find the sensation pleasurable, while some may be motivated by the responses of others.

How you can help

It’s important to figure out what may be causing the behaviour before intervening. If your child is self-injuring you should seek help from your GP as soon as possible to rule out any undiagnosed health problems.

Once other health issues have been ruled out, professionals working with children with intellectual disabilities can use a range of tools, including charts, questionnaires and observation, to figure out what is causing the behaviour. You can find more information on these techniques and what to expect on Cerebra’s website.  

‘See professional help as soon as possible’

Treatment involves reducing rewards and reinforcements, changing or eliminating triggers and building the child’s communication skills. Medication can also be used to treat self-injurious behaviour but normally will not be prescribed until these other sorts of interventions have been tried.

If you have tried to avoid reinforcing self-injury and the behaviour continues or gets worse, you should seek professional support as soon as possible. Contact your GP, who should be able to provide a referral to your local service.

Taking care of yourself

It can be incredibly upsetting to discover that your child is self-injuring. Naturally, you will be worried about their wellbeing, but it’s important not to neglect your own needs. Cerebra offers family support forums in England and Wales for parents and carers of children with neurological conditions – visit its website for more information and to find out how else they can help. 

The advice published on Parent Info is provided by independent experts in their field and not necessarily the views of Parent Zone or NCA-CEOP.

Updated: ​May 2018

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