Some of us may be feeling disconnected, dejected and alone as we navigate this challenging time. But we know it is temporary. For some individuals and their families, these feelings are the norm.
I speak of a small cohort of people with complex disabilities who, at times, may display significant behaviours that challenge us and at times challenge the community. A classic example of this is some of the children diagnosed with autism spectrum sisorder. These kids find it tremendously difficult to understand and communicate with others, manage change and successfully navigate complex environments. These factors can have a deleterious impact upon the child, with certain situations and environments causing significant stress, cognitive confusion and emotional overload.
So what happens? Sadly, some kids, in an attempt to escape this significant emotional turmoil, may escalate into what many parents call a “meltdown”. They cannot communicate, they cannot regulate and at times their one and only option is to melt down. These “meltdowns” are serious and can consist of behaviours such as aggression, self-harm and property damage. In worst-case scenarios these behaviours can occur several times a day and often result in someone getting hurt or property being damaged beyond repair.
In addition, the collateral damage of such behaviour can be also quite pronounced. These kids and their families are often ostracised, excluded and fundamentally isolated from a range of community activities and environments. Such behaviours impact on the child’s learning as they may be suspended from school and isolated again in the family home. Furthermore, these children are often prescribed medication — often the heavy artillery of psychopharmacology — to quash the frequency and severity of the behaviour. While it may be effective in controlling the child’s behaviour, these medications may do little to enhance the environment and the build the skills the child needs to regulate their behaviours.
Fearing the embarrassment of a meltdown, parents, siblings and the child avoid social gatherings with friends. Isolation, social exclusion, limited capacity to participate in community-based activities, impacts upon work-life balance. Sound familiar? Sadly, this is the scenario many Australian families have been living with for years.
While this is difficult and problematic, the good news is there have been significant advances in behavioural science over the past few decades. Notably, there has been a significant shift away from using punitive consequences for behaviour to a model that fundamentally seeks to better understand the purpose of behaviour. If we understand the drivers of the behaviour, we can often modify environments so they actually work for the child. We can teach and we can teach well using an array of educational methodologies the child understands.
Because the environment is finally working for the child and we have helped them build skills with communication and emotional regulation, they do not need to melt down to say “get me outta here” or “please help me, I need something”.
Over time, the behaviour extinguishes and for the first time, possibly for many years, the individual and their family can emerge from their COVID-like exile and enjoy community life.
We often take social inclusion as a given. It is only when it is taken away we experience what it must be like. The next time you think about the tough conditions of COVID-19 isolation, spare a thought for the individuals and families dealing with complex behaviours and the impact this is having on their collective lives.