My son at his favourite music event – Keswick Mountain Festival.
Challenging Behaviour is a term that people disagree on.
As a medical term, it is generally used to describe behaviour that is anti-social, or difficult to deal with. It’s generally used to describe certain behaviours from people who are autistic or have a intellectual disability. The NHS define it as behaviour that puts the individual, or those around them, at risk.
The fact that the behaviour can be part of that person’s medical condition means that some people object to the term and like to rephrase it as Behaviours that Challenge, because to say Challenging Behaviour implies that the person has some conscious control over their actions. In many cases the behaviour is not possible to control. It is impulsive, part of their condition and almost like a reflex.
This is often the most difficult part for people who haven’t experienced it to understand. It’s a difficult concept to understand that someone’s behaviour is not intentional. That an inner turmoil of emotion and overload is causing the behaviour and not the true personality of that person.
There is often no rational way to deal with challenging behaviour and that doesn’t make sense to most people. It can sometimes be predicted, or pacified but it can’t be reasoned away. It doesn’t fit in any parental handbook.
I guess we need to have standardised medical definitions, because otherwise we can’t communicate our understanding of conditions, and set protocols on how to treat those conditions. The downside of a definition is that for certain conditions they often provoke a misunderstanding based on whatever your life experience is.
If I say that my son is autistic then you will automatically have a picture in your head of what you imagine him to be like. That picture will bear little relation to my son if you ever met him, or help deal with his many challenges. In the neurodiverse population there are so many cross-overs and intersections between various diagnoses that it is almost impossible to describe someone in a single phrase.
However, lets start this with some of those definitions, because that is the only way we can communicate and you do need to have some understanding of my situation when reading this.
My son has a intellectual disability, he is also autistic and he displays many forms of challenging behaviour which include NSSI (non-suicidal self injury) on a daily basis. His IQ has been measured in the 40s, which means he has a moderate intellectual disability (not a mild disability.) This means his ability to reason, understand and learn is very limited. He doesn’t understand concepts such s consequence.
"I don’t believe that his challenging behaviour defines who he is. It is part of his disability and one of his many challenges that we have to navigate.”
Now whilst this is all going to sound like quite a negative piece, actually when my son is not being challenging then he is lovely to be around. He has no social filters so when he is in a good mood he talks to everyone around and he is great to break the ice in any situation. In this mood he makes friends easily and people like being around him. I don’t believe that his challenging behaviour defines who he is. It is part of his disability and one of his many challenges that we have to navigate.
He has a disability, and the way he engages in the world it always going to be nuanced. He won’t be able to access the world in the way that 98% of the general population can. This includes reading, understanding and learning new skills; but also includes how he tolerates sudden loud noises, minor irritations, sensory stimulation and information overload.
His senses are not attuned to the world in the same way as other people. Some are hypersensitive, and some are hypo-sensitive. This again is very difficult concept for people to understand because we tend to believe that everyone perceives the world in the same way. We tend to be believe that the world that we experience is real, but really it’s only our interpretation of it.
For some people, the tools that they use to interpret the world are wired differently. Their senses might overload at a different level to yours.
“We tend to be believe that the world that we experience is real, but really it’s only our interpretation of it. For some people, the tools that they use to interpret the world are wired differently.”
Imagine a sound check before a band performance. The engineer uses a graphic equaliser to check for feedback, or overload. The bands of that graphic equaliser are raised to get a good level, but not cause feedback. Now imagine that graphic equaliser as the input from your senses and emotions. For some people the normal level may need raised to get a sensation, and other inputs cause overload at a lower level.
Things that would not provoke a negative physical reaction in most people, will cause my son distress and build-up to a meltdown. Minor frustrations cannot be held inside and will provoke a physical reaction.
If it helps I will give you a illustration. Imagine walking down a country lane. Your leg brushes against a stinging nettle so you jump back in pain. Further along you trip on a stone and a motorbike speeds by. Imagine for a minute how these three things would affect you.
My son has a very high pain threshold, so the nettle wouldn’t even register. Stubbing his toe on a stone would cause frustration and he would more than likely cause him to swear and blame innocent passers by. But it is the motorbike would cause the most extreme reaction. It would cause instant distress. He would more than likely be verbally abusive to the person driving the motorbike and maybe try and throw his shoe at them. He would more than likely scratch and pick at his arms to make them bleed. The reaction would continue for 5-10 mins.
There are hundreds of other examples, and families that experience challenging behaviour will all have their own examples. Every neurodiverse person is incredibly different in how they interact with people and the world around them.
I find the challenging behaviour the most difficult thing to deal with. Partly because it is the most publicly miss-understood part of his disability. It is not Tourettes! If he tries to get on a bus and can’t read the timetable because of his intellectual disability. It’s likely that someone will come forward and help him. However, if he gets frustrated that he can’t read and tells the bus driver to ‘f**k off,’ then it’s likely to cause a negative and maybe hostile reaction. Yet this is still part of his disability. His inability to alter his behaviour. He has no sense of societal norms. He has no safety release, no sense of when certain behaviours are unacceptable. He cannot hold negative feelings inside.
Sometimes I feel that the support and understanding for people with intellectual disabilities can be likened to the support given to those animals nearing extinction. The cute animals, the ones that look nice and cause no offence, they have lots of supporters trying to help them. However other animals, still being themselves and still being a valuable part of the ecosystem, attract derision and insult because they appear to be a perceived threat.
It is a slightly clumsy analogy, and regardless of whether you agree with me, we do have a
situation in modern society that some form of disabilities are accepted in their entirety, and some disabilities are not. It’s acceptable for someone to have a intellectual disability as long as that disability doesn’t cause them to swear and gesture. The public will be understanding and sympathetic as long as you have an acceptable disability.
“The public will be understanding and sympathetic as long as you have an acceptable disability.”
I also find that many people, regardless of how accepting and patient they are, have their own individual limits on how much they believe challenging behaviour is acceptable in society. I think this tends to be part of that persons belief system, and the environment they live in. Once they reach that limit then regardless of how understanding they believe themselves to be, a limit is reached.
For some people, even though they know someone is autistic, a mild curse in public is too much for them – ‘You should control your son!’ ‘Its not appropriate – there are children around.’
For other people, they may accept the odd swear, but if that is associated with threatening
behaviour, or if they see the self-harm, if they see the blood being smeared on clothing and walls, then this may be their limit. ‘You just can’t do that!’ ‘They shouldn’t be allowed out if that’s what happens.’
Why is it that one aspect of a disability should be unacceptable compared to another? The same disability causes the same reactions. It’s the same person, with the same challenges. The same family trying to cope. Nobody wants to have to cope with challenging behaviour, not even the person who displays it.
“Nobody wants to have to cope with challenging behaviour, not even the person who displays it.”
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 for bumping into you. In both instances the disability has caused you harm, but it is way more likely that you will accept that a blind person bumping into you is not their fault than if my son swore at you.
I guess it is partly related to the perceived threat. When my son is quietly watching the trains with his ear defenders on, chatting away to anyone who will listen, then he is not a threat to anyone. It’s that cute learning disability, that ‘aw bless him’ reaction that I hate as much as when people get offended. But when he has reached a limit and is being challenging in public, then it becomes anti-social.
Which is also bordering on a philosophical debate. Is anti-social behaviour ever acceptable or excusable?
I think for me the clue is in the name anti-social. To be anti society you have to have a concept of society. You have to be able to interpret social norms, and know what is acceptable in a given situation. How can you be truly anti-social if your disability means that you have no concept of what society is? This is why some definitions of challenging behaviour include the phrase culturally abnormal behaviour. Its to illustrate that each society sets its own boundaries for what is considered acceptable.
There should be some allowance and some understanding that it is the disability causing that anti-social behaviour and not the person.
“There should be some allowance and some understanding that it is the disability causing that anti-social behaviour and not the person”
But… this is a parent’s perspective. And I am human too. With my own sense of society and what should be acceptable. And I grew up and live in a society that told me it was bad to swear in public, and not to be aggressive towards people for no good reason. Not that it particularly matters, but I was brought up Catholic and still hold those values. We’re supposed to empathetic to other peoples feelings and care about others around us. I don’t want to cause people around me distress for no good reason.
I am not embarrassed about the challenging behaviour, I’ve got way past that point years ago. Sometimes I couldn’t care less that people get offended, it is generally those most ignorant and prejudged that do.
And then on other days I just want to close the curtains and hide us all away. It is the most
frustrating, exhausting thing in the world to see your son being anti-social, offensive or upsetting and knowing there is nothing you can do to stop it. Knowing that some of the people around are judging because they believe they understand the situation and believe you should be able to control your son.
As you would imagine that the self-harm is the most upsetting, but it is amazing what you get used to. The wounds on my son’s arms have not healed in over 10 years, he is constantly reopening them. Little incidents are so common that it barely raises the heart rate. Cleaning him up and patching the wounds is just another daily task.
However, the larger incidents are always very upsetting. There is generally a lot of blood and a lot of aggression. Lots of things get broken. I worry that his wounds will get infected. I worry that if the wounds are too deep that we won’t be able to deal with them at home, but he will be too distressed to let a doctor deal with them. I constantly worry that his challenging behaviour will mean that he won’t get the help he needs. Especially if he is around people that don’t understand him.
You can’t get angry, because that inflames the behaviour. You can’t reason with him because once he is displaying challenging behaviour he has got past that point. You have to bite back every human instinct and emotion. I think you do lose a bit of yourself because you have no choice but to shut down, let it happen, try to protect him as best you can and hope that it doesn’t last long.
And when it’s over, you can’t blame him, you can’t punish him, you can’t talk about it because he cannot put it into words. It is truly not his fault. It is his disability. He has little to no control.
I am constantly on edge when we are out in public. I hate that he has to wear a sunflower lanyard to try and help the public’s understanding. I can recognise the warning signs that something might happen, but I can’t stop it happening. When it does happen it is difficult to know whether we will be able to deescalate the situation quickly or whether that particular episode will change the course of our day.
We prepare as best we can. We change plans quickly and cancel events regularly. We try to
remove him quickly from situations that we recognise are triggering. We avoid situations that would be too risky.
No-one wants to deal with challenging behaviour. It is truly horrible to deal with. There is no cure. No one knows the answers. There is no respite. There are very few people that can help (believe me, I have tried everything and every single organisation that you would assume would try and help just won’t.)
I don’t want sympathy. I don’t particularly want understanding. If anything, I would like to take the assumption away from all those around us.
“There is always an assumption”
There is always an assumption. It ranges from those who just think my son is being naughty and just needs boundaries or discipline, to those who believe in ‘positive behaviour support’ or sensory distraction techniques.
There is an assumption that there is something we should do, or haven’t done, that would take the behaviour away. In this modern world there is cure for everything isn’t there? Some treatment, or logical reasoning, or discipline, or diet, or restricted diet, or medication, or a different parenting style, or distraction techniques would stop the challenging behaviour?
There is an assumption that there is something we haven’t tried, or haven’t thought about. That someone better equipped would be able to stop the behaviour in an instant.
Wouldn’t it be nice if there was something, but there is nothing easy about this.
Nobody wants to have to cope with challenging behaviour, not even the person who displays it.
Challenging behaviour takes away the ability to access the world.
It is in it’s truest sense – a disability.
Simon Berry
September 2026
Note on Terminology
In this article I’ve used the term intellectual disability because it is least likely to cause confusion. In the UK, we more frequently use the term learning disability but this can mean different things in different Countries.
