Challenging behaviour is a term people disagree on. It is used to describe behaviour by people who are autistic or have a learning disability that is antisocial or difficult. The NHS defines it as that which puts the individuals themselves or others at risk.
Some object to the term, rephrasing it as “behaviours that challenge” – because challenging behaviour implies someone has control over their actions.
While definitions help us communicate our understanding and set protocols on how to treat conditions, the downside is they often provoke misunderstanding. I am increasingly mindful of this as my son Max, 20, grows older.
Max has a learning disability; he is also autistic and displays many forms of challenging behaviour, including self-injury. His ability to reason and understand is limited.
Reactions
Yet, when my son is in a good mood, he is lovely to be around, talks to everyone, can break the ice and makes friends easily. His challenging behaviour does not define him. It is part of his disability and one of his many issues that we have to navigate.
Things that would not provoke a negative physical reaction in most people will cause my son distress and build up to a meltdown.
One example: imagine you are out for a country walk and your leg brushes against a nettle so you jump back in pain. Then you trip on a stone and a motorbike speeds by. Imagine how these three things would affect you.
My son has a very high pain threshold, so the nettle would not register. Stubbing his toe would likely cause him to swear and blame innocent passers-by. But the motorbike would cause extreme, instant distress. He would verbally abuse the motorcyclist and maybe try to throw his shoe at them. He would scratch and pick at his arms to make them bleed.
It is assumed there is something we should do – a different treatment, reasoning, discipline, medication, diet, parenting style or distraction
I share this story because some disabilities are accepted and some are not. There is understanding and sympathy (if not empathy) if you have an acceptable disability.
Imagine if a partially sighted person walks into you. To get angry with my son for swearing at you is like getting angry with that blind person. In both instances, the disability has caused you harm but you will probably accept that a blind person bumping into you is not their fault.
“You should control your son” is a comment we’ve had in public. There no understanding that the disability causes the behaviour, not the person. I am not embarrassed about such incidents. Sometimes, I couldn’t care less that people get offended – it is generally the most ignorant who do.
Judged
Then, on other days, I want to hide away. It is frustrating and upsetting to see your son being offensive and knowing you cannot stop it and that your family is being judged because some people believe your son should be able to control himself – or that you should.
I can recognise the signs that something might happen but it is difficult to know whether we will be able to de-escalate the episode or if it will change the course of our day.
When it’s over, you can’t blame him, you can’t punish him and you can’t talk about it because he cannot put it into words. It is not his fault.
So we prepare as best we can. We change plans and cancel events regularly. We try to remove him from triggering situations.
Challenging behaviour takes away my son’s ability to access the world. That is his true disability.
It is assumed there is something we should do that would stop his behaviour – a different treatment, reasoning, discipline, medication, diet, parenting style or distraction. I can’t change a medical condition but maybe society can start to change these assumptions.
Simon Berry is a parent advocate and optometrist. A longer version of this article is at https://simonberry.co.uk/challenging-behaviour
