People affected by TSC often deal with behaviours that can be challenging. Tantrums, harm and abuse are just some of the actions that come under this area. Better understanding of why these actions occur, and what triggers for them are, might help in managing them
What are behaviours that can be challenging?
A behaviour is considered challenging if it places the individual or others at risk of physical or emotional harm. Such behaviours might encompass acts of aggression towards others, self-harm, or destructive actions like breaking or throwing objects. While people with learning difficulties or disabilities tend to display these challenging behaviours more frequently, it’s essential to note that anyone can exhibit them. In the context of TSC, these challenging behaviours are a part of TSC-Associated Neuropsychiatric Disorders (TAND).
Why do people exhibit behaviours that can be challenging?
There can be various triggers for behaviours that can be challenging, that are unique to each individual. A common trigger can be a stressful environment, such as a noisy room. It might also be an attempt to communicate a need, like hunger or thirst. In some cases, it is an outlet for pent-up frustrations or intense emotions. This is especially true for individuals who cannot speak.
Consider the challenges faced by someone who can’t verbally express their needs or desires. This can make behaviours that can be challenging easier to understand.
How can I predict behaviours that can be challenging?
To anticipate these behaviours, it’s helpful to maintain a record of each occurrence. Details to note include the location of the incident, the events leading up to it, subsequent reactions, and a description of the behaviour itself.
A useful tool is the Antecedent (meaning ‘before’), Behaviour and Consequences (ABC) chart:
How can I reduce behaviours that can be challenging?
Most individuals have an ‘early warning system’ that signals the onset of challenging behaviour. Initially, these signs might be subtle and challenging to recognise. However, tools like an ABC chart can help you to detect them. The warning signs could be repetitive actions, specific noises, or muscle tensing. Recognizing these early indicators allows you to pre-emptively manage and potentially defuse a challenging behaviour before it escalates.
How can I support someone during the behaviour?
Your demeanor plays a crucial role in supporting someone. Strive to remain composed, even if you’re triggered by the behaviour. A gentle smile and a calm, clear voice can encourage the individual to mirror your behaviour. Refrain from bombarding them with questions and be prepared to offer them space if it seems beneficial. If the situation escalates to a potentially dangerous level, don’t hesitate to call the emergency services. Remember, managing these behaviours is challenging, so be compassionate towards yourself.
How can I support the person after the behaviour?
Post-incident, the atmosphere can be tense and emotionally charged for everyone involved. Transitioning to a different environment or engaging in a distinct activity like taking a walk can be therapeutic and help reset the mood. Once calmness is restored, it might be worthwhile to reflect on the incident to better prepare for future occurrences, such as using the ABC chart.
Challenging behaviours can be difficult for everyone involved. For more information on managing behaviours that can be challenging, or for a listening ear, please reach out to the TSA Support Line (0808 801 0700, support@tuberous-sclerosis.org, webchat).
