TSC and challenging behaviour by Dr Jane Waite
This is an overview of the presentation on TSC and challenging behaviour by Dr Jane Waite, scheduled to be given at the TSA Big Day on Saturday, 10 November at Sheffield Hallam University.
Behaviours that challenge such as self-injurious behaviour, aggression and property destruction have been reported to occur in at least a third of individuals with TSC, and recent research has shown that these behaviours can persist over time. Despite this, behaviours that challenge are not inevitable in TSC. There are several things that should be considered when trying to make sense of these behaviours.
Is your child/person you support in pain?
Due to the health difficulties experienced by people with TSC, pain and discomfort may occur. We also know that pain and discomfort are associated with behaviours that challenge in TSC. When a person is in pain the behaviour will often ‘come out of the blue’ and will be present in lots of different situations. During an episode of challenging behaviour caused by pain, the person may appear distressed and it may be very difficult to get the behaviour to stop, even if you try a variety of different strategies. The inability to console a person tells us the behaviour is likely to be due to pain rather than for another reason. More information on how to identify pain and what to do about it can be found by accessing the Cerebra Pain Guide.
Does your child have an effective communication system?
Behaviours that challenge are more likely if a person has an intellectual disability with an associated communication impairment. Focusing on developing communication can be key when trying to reduce behaviours. Does the person with TSC have a way of letting you know when they want something to stop or when they need/want their favourite things (including you)? If you have a child with TSC who has a communication difficulty, an early referral for speech and language therapy is important. Speech and language therapists can focus on developing language, but they also can help the person to develop alternative ways of communicating, such as using signs or picture systems. Even when a person uses speech, these alternative communication methods can often be helpful, particularly when a person is under stress and may have difficulty forming or generating the words they wish to say.
Can you identify a pattern?
Many challenging behaviours begin because of a painful health condition but later become learned behaviours that communicate something about a person’s world or their wants/needs. For example, a child with a painful ear infection may initially bang their head on the floor as a reaction to this pain. Concerned parents who want to keep their child safe and stop the head banging occurring may respond to the behaviour in a number of ways. Parents may try to console their child, offer them an object to distract them, or they may reduce the amount of demands they are placing on their child.
All of these actions are completely natural ways of responding and almost always occur when parents see behaviours that challenge for the first time. However, what we know is that these responses can sometimes make behaviour more likely to happen again in the future. For example, overtime a child might learn that head-banging usually leads to something that is rewarding for them, which may be social interaction, or access to preferred objects, or escape from demands. This does not mean that the child is showing these behaviours on purpose, just that the behaviour and the reward that follows the behaviour have been paired together enough times for the relationship between them to be learnt accidentally.
Given that challenging behaviours are often communicating important things about the person with TSC and their world, it can be helpful to keep a detailed record about the behaviour. This record should include what was happening just before the behaviour began and how other people responded immediately afterwards. You can download an ABC chart online to structure your record. Keeping a record can give clues about why behaviour occurs and can help identify different ways to respond. When keeping behaviour records it is important to record exactly what you see, rather than the reason why you believe the behaviour is occurring. The ‘ABC’ in ABC chart refers to Antecedent (what was the person doing or what happened just before the behaviour), Behaviour, and Consequence (what followed after the behaviour).
The 'function' of the behaviour
The message the behaviour is communicating is called the ‘function’ of the behaviour. The type of behaviour a child shows is less important than the function, although it is important to write the exact type of behaviour in your behaviour records as sometimes different behaviours have different functions. Once the function is known there are a number of strategies that can be tried to reduce the behaviour, but the choice of strategy depends on knowing the function of the behaviour first. In summary, the next step, after ruling out pain as a cause of behaviour, is trying to monitor when behaviour occurs to work out what it is communicating about a child’s needs or wants.
Impulsivity in TSC
Impulsivity has been linked to challenging behaviour in people with TSC, which suggests that sometimes behaviours might be difficult for a person to control. When a person is impulsive, they usually have difficulty regulating or putting the brakes on behaviour. It is important that impulsivity is considered as part of any intervention for challenging behaviour for a child with TSC.
Bringing it all together. If your child is showing behaviours that challenge it is important to try to obtain a referral to a specialist in your local area who can help to make sense of the information you collect as well specific information about TSC. For example, you may wish to share that impulsivity has been associated with behaviours that challenge in TSC, as well as the things noted above. If the behaviour is impacting your quality of life, or child’s quality of life, a GP will often be able to signpost you to this specialist, who may be a clinical psychologist, member of a behavioural support team or a behavioural nurse. The important thing is that behaviours that challenge are not inevitable and can be reduced. A good book for learning about challenging behaviour is ‘Stop that (Seemingly) Senseless Behavior!: Fba-based interventions for people with autism,’ by Beth Glasberg
. While this book is not TSC specific, and does not cover issues such as impulsivity, it does give some helpful hints and tips about why challenging behaviours can occur and what to do about them, particularly in people with communication difficulties.