Dysregulated Behaviour Cluster

What to do

In this section you will find suggestions on ‘What to do’ for all dysregulated behaviours, as well as specific tips for temper tantrums, aggression and self-injurious behaviour. Regardless of the type of behaviour, there are central things that you can do that will help you and your loved one.

For all behaviours

  • Remain calm. Dysregulated behaviours can evoke powerful responses from parents that range from annoyance to frustration to sadness to anger. Although it may be hard, it is helpful to remain as calm as possible for your own wellbeing, and to potentially increase the responsiveness from your loved one.
  • Prioritise self-care. Self-care may seem to be the lowest priority when caring for a loved one with dysregulated behaviours. However, it is prioritised in this list because it is essential. Think of how airlines advise placing on your own mask before placing a mask on a child. They give these instructions knowing that a parent cannot help a child if they are not getting oxygen.
  • Decide which behaviours are of concern to you, your family, and your loved one. Although it may be tempting to work on all behaviours at the same time, working on one behaviour at a time, starting with the most troublesome behaviour is often a better approach.
  • Track those behaviours. You can use the ABC Chart in the resource panel to track behaviours. Indicating what happens before the behaviour ‘A’ antecedant, the behaviour ‘B’ and the consequence ‘C’ of the behaviour can be helpful for noticing patterns of behaviour and finding appropriate interventions.
  • Consider optimising exercise for yourself and your loved one. Exercise can be helpful in releasing excessive energy which can be helpful in decreasing frustration and may have an impact on dysregulated behaviour. For caregivers, exercise may be helpful in producing calm, and a way of putting on your ‘oxygen mask’ first.

During a temper tantrum

  • Use quiet, peaceful responses, but do not give in or break your own rules. Although it may feel natural to escalate as your loved one escalates, a calmer approach is often more helpful.
  • Try gentle distraction. An example would be re-directing your loved one to a different toy.
  • Lead your loved one away to a quiet place. Often times busy environments can be overwhelming. Finding a quiet place may help with calming.
  • Ignore in safe circumstances (not hitting, kicking, biting, or throwing), then discuss. If the behaviour is not unsafe, ignoring some behaviours may lead to reduction.
  • Give control over little things (offer small, directed choices vs. yes/no). Being given a choice often helps your loved one feel empowered and may also help with calming. 

Preventing temper tantrums

  • Ensure routine and adequate sleeping and eating. Having the same time for sleeping and eating can be helpful in establishing a routine.

  • Provide nap or quiet time. If your loved one’s behaviour can be provoked by being tired, this can be especially helpful.
  • Catch and praise them when behaviour is as expected. Make an effort to celebrate desired behaviours.

  • Make requests in a friendly rather than a demanding tone. A calm tone may help avoid frustration and undesirable behaviours.

  • Distract if in another temper tantrum prone situation. Similar to gentle distraction in the midst of a tantrum, directing your loved one’s attention to something else may help to prevent a tantrum.

  • Choose your battles. Many tantrums can be triggered. For example, a child may have a temper tantrum when their electronic device is taken away. Using this example, a caregiver can decide when it is important to remove the device, knowing that a tantrum will likely follow, and when their child is allowed to keep it and maintain the peace. There will be times when it must be removed, but it is up to the caregiver to decide (choose) when to remove it, risking a tantrum (battle).
  • Know your loved one’s limits. Try to avoid situations that override your loved one’s ability to cope. For example, some may be able to sit for an entire two-hour movie, but others may need to leave after 30 minutes.

  • Set up your loved one for success. Just as there are triggers for temper tantrums, there are things that bring pure joy to your loved one. Consider incorporating pleasantries into their regular routine to decrease the likelihood of temper tantrums. Another example of setting up your loved one for success would be avoiding placing them in situations where the requirements of the situation outweigh their developmental/behavioural level, e.g. an individual with a functional age of two years being expected to sit quietly for a two-hour movie, or being in a classroom with expectations set for individuals who are functionally five years old. Just as important, is ensuring adequate sleep and rest, so scheduling a nap or quiet time is another strategy for temper tantrum prevention.

For aggression

Same as temper tantrums, and also:

  • Prioritise safety. Consider having special equipment for you and your loved one, e.g. soft helmets, blocking pads.
  • Avoid restraints without professional consultation. Restraints include physical means of holding an individual in place, or restricting movement of their arms and legs using a device or another person.

For self-injurious behaviour

Same as temper tantrums, aggression, and also:

  • Ensure eye and head protection. This can be achieved with plastic glasses and a helmet.
  • Remove all potentially dangerous objects, such as kitchen knives, etc.

A patient story: Tommy's temper tantrums

Tommy is a 30-year-old young man with TSC who is relatively high functioning, his parents got in touch because of his temper tantrums. He lived in an independent home with caregivers and the caregivers reported that when he would get upset he would damage property. He would kick out glass windows, he would throw things, he would destroy their property, his property and that of others. 

So we evaluated Tommy and he underwent a functional behavioural assessment (FBA) which revealed that his tantrums were related primarily to not getting access to desirable activities, and frustration with changes in the caregiving team. We also discovered that Tommy was struggling with significant anxiety, which worsened the tantrums. So for the treatment plan, the non-medication part of the treatment plan was allowing Tommy to have access to desirable activities at certain periods of the day, and providing him with a visual schedule so that he would know when those times were coming. He could also earn additional time spent with desirable activities by complying with requests from the caregiving team. To avoid the shocking temper tantrum associated with working with a caregiver that he did not prefer, he was also given a visual schedule that would allow him to know which caregiver was going to be working with him that day. 

Over time Tommy continued to enjoy his desirable activities, which included playing outside and taking walks. We noticed a significant decline and near elimination of the temper tantrums. He was also provided with medication for management of his underlying anxiety. Overall he was able to again make significant improvement. The tantrums resolved, there were minimal to no tantrums, and and he was quite happy with his placement.