Lucy Sanctuary is a Paediatric Speech and Language Therapist working for the NHS and in private practice. In this article she discusses the reasons why autistic children may self-injure, and explores how speech and language therapy approaches can reduce the stresses and pressures that may lead to self-harm.

What is self-harm?

A parent recently told me that her child has been self-harming since infancy, but she had only just discovered that this was self-harm. She said that she thought self-harming was cutting yourself, and she had not realised the definition was much wider.

The NHS define self-harm as: “When somebody intentionally damages or injures their body.” Research suggests that 50% of autistic people engage in some form of self-injurious behaviour, even if it is only once in their lifetime.

Common forms of self-harm include:

• biting
• hitting
• head banging
• excessive scratching or picking.

We often assess non-verbal children, or children without much language, who bang their head, poke themselves in the eye and bite themselves. It can be very distressing for families, who often feel powerless.

More severe forms of self-harm are:

• eye pressing/gouging
• hair/teeth/nail pulling
• Pica (eating non-food items)
• cutting
• stabbing
• eating toxins. I have been working with a boy who eats his excrement, which is not only distressing for his family and all those that work with him, but dangerous.

An autistic boy in hospital scratched his hands and arms at the same time every night. Staff would stitch his wounds and bandage his hands only for him to repeat this ritual. He would not allow himself to go to sleep until two in the morning, regardless of how tired he was. He wore the same clothes every day, did not wash or brush his teeth and slept on the floor. He endured this for months.

What causes self-harm?

There is not one cause. It can be multi-factorial and vary from person to person – some of the main causes are outlined below.

1. Mental health difficulties. These can include anxiety, depression and/or OCD. 40% of the autism population are reported to have at least one anxiety disorder compared with 15% of the general population (NAS, 2011).
2. Social communication and interaction difficulties. Difficulties understanding social rules and behaviour, a reduced awareness and understanding of others and a narrow focus on details rather than the whole can lead to isolation, bullying and mental health difficulties. This can contribute to self-harm.
3. Sensory difficulties. For example heightened senses can cause pain, “Every time I am touched it hurts.” (Gillingham, G. (1995)
4. Executive function difficulties. These can impact on the ability to problem solve, to consider alternatives, inhibit impulses, etc.
5. Difficulties recognising, understanding and regulating emotions. I work with a boy who self-harms when he feels that he that he has let other people down. He feels strong emotions that he cannot process easily. He cannot reflect on the situation or problem solve. He becomes impulsive and cannot monitor his behaviour at all and he hits and bites himself, and bangs his head on surfaces.

What can help?

In my job I am always looking to reduce stress and pressure on children and young people that I work with, in order to enable them and help them to communicate easily and successfully. Key strategies are:

Adapting our own communication

Reducing the amount of language we use, making sure it is at the child/young person’s level and giving them time to process what you have said before you add more.

Reducing the number of questions you ask. It can be instinctive to ask questions when a child/young person is finding it hard to communicate, but this does not make it easier to talk. Instead it can put additional pressure on a child and increase anxiety and stress. The way that you talk can cause stress if you use language that is ambiguous, imprecise or open to more than one interpretation.

I often use an approach called Responsive Communication with non-verbal children and children with very little functional language, which involves following the child’s lead and entering their world. It is very powerful, moving and effective. 

Visual support

We all use visual support, for example calendars, lists, diaries, but it can be hard for families to use it in a structured, explicit way. Visual support takes many forms depending on the level of the child/young person. There is a lot of choice, which means families can find what works for them.

You can use calendars to try to help children and young people accept unstructured time when we do not know what is going to happen, and to link uncertain events in the past with uncertain events in the present. For example, talk about the coming week and mark on the calendar what is happening on each day, such as school, karate after school club etc

Leave some time at the weekend blank and say that you do not know what you will be doing then, but when you do know you will fill it in. Remind the child of a previous time when you did not know and had to leave it blank, but you filled it in later when you did know what you would be doing and it was okay. This is to try to help reduce anxiety about the unknown.  

Research carried out by Catherine Pownall and Mary Yong at Bridges in Social Understanding suggests that the support for social communication and interaction needs to run for at least 3 years, and involve families and key professionals such as teachers, in order to help transference of skills.

There are some fantastic resources that can be used. One of my favourites is The Zones of Regulation by Leah Kuypers, which raises awareness of:

• feelings and their intensity
• strategies that help us calm down
• expected and unexpected behaviours
• recognising the size of problems and appropriate responses.

Case study

T is nine. He is an articulate, bright boy with a diagnosis of autism. He has very high levels of anxiety and often feels under threat. T finds uncertainty extremely difficult to manage and hits himself, bangs his head against walls, doors, the floor and he bites himself.

T is taught outside of the classroom in a one to one setting. He is not allowed to play with his peers at breaks and is always under adult supervision. His behaviour is challenging because his interior world is hard for him to manage and he is trying to cope with intolerable uncertainty and overwhelming stress.

What we did

We put in place core strategies to be used by all adults working with T and his family to reduce anxiety:

• give him time to process language
• check he understands what he has to do
• reduce the number of questions
• use visual support to make routines predictable.

His mother is using a calendar to help him tolerate uncertainty.

T had adapted CBT sessions at school. His mother attended every session and supported in-between session tasks.

T responded particularly well to:

• using the zones of regulation to recognise emotions and to put in place strategies to come back to the green zone
• drawing, role play and acting out scenarios with little figures. This helped him to see things from others’ perspectives, to see the context and to learn strategies
• adapting everything we do so that it is accessible, developmentally appropriate and uses his interests, e.g. football
• feeling success
• having fun!
• having control, e.g. setting his own targets and planning the agenda in sessions.

We explicitly connect the past with the present to help him learn from past experiences rather than see each experience as unrelated and isolated.

Outcomes

T is back in the classroom and he is allowed on the playground with his peers, but he is observed by an adult. School report a decrease in incidents and home report a decrease in meltdowns and self-harm.

The biggest change is that school and T’s family understand his strengths and difficulties more, and have a toolbox of strategies to use which reduce stress and pressure on him and helps him manage uncertainty.

Further information

• Lucy Sanctuary
• Autism and self-harm: an interview with Lucy Sanctuary