If your son or daughter has autism, chances are that you’ll hear professionals using a certain amount of delicate phrasing. ‘Challenging behaviours’ or ‘behaviours that challenge’ are among the most common, or sometimes even just ‘behaviours’ – though the chances are good that in the privacy of your own home, you’ll probably be using a lot franker language.
What are these behaviours?
Put simply, we’re talking about anything your son or daughter does that puts them at risk, puts someone else at risk, or makes things harder to manage. Some children with autism are easy-going and don’t act out all that much, while others can be an almost non-stop handful –and if the behaviours are intense, frequent and/or prolonged, they can put a big strain on family life.
Common examples of these behaviours include:
Physical aggression. Hitting, biting, pinching, scratching, kicking, head-butting, throwing objects, pulling hair, spitting, slapping.
Non-physical aggression. Screaming, yelling, tantruming.
Self-injury. Also known as ‘self-injurious behaviours’. Examples include banging their head on the floor, walls or furniture, hitting themselves, scratching themselves, biting themselves. Pica, which means eating things other than food, can also come under this heading when the boy or girl eats potentially toxic or sharp objects.
Destructiveness. Venting aggression on objects, damaging things.
Running away. In the case of autism this doesn’t mean packing a bag and leaving; more common is a child who runs out of the house every time the door is opened or runs away from the family whenever they’re outside – not so much to get away from the family as because they’re just running for the sake of running.
‘Smearing’. The common euphemism for playing with poo and/or smearing it on walls, furniture and so on.
There’s also a grey area when it comes to stimming – that is, self-stimulating behaviour such as flapping or rocking. In moderation, many stimming behaviours are harmless and some people argue that they’re a perfectly reasonable way of relaxing.
A child who stims non-stop, however, may cause themselves a problem because it may prevent them from learning basic life skills; other stims can be self-injurious. (Head banging or repeated hitting oneself, for instance, are sometimes extreme forms of stimming.)
Are any of these just tantrums?
The simple answer is that anger or distress may be part of it, but that there are certain differences. For starters, there’s a difference between a tantrum and a meltdown. Some behaviours are also not necessarily motivated by anger or distress, which we’ll discuss more below.
Bottom line: kids sometimes have tantrums, and this includes kids with autism. Autism makes it likely that your son or daughter will have tantrums at older ages than the average neurotypical kid. However, not all behaviours that challenge are tantrums and not all tantrums are particularly caused by the problems of autism – some are just a frustrated person kicking off, as frustrated people do whether they have autism or not. As is often the case with autism, the simple answer is that it’s complicated.
Why on earth are they doing these things?
There’s no one explanation for behaviours that challenge, but there are some broad areas that can be helpful to keep in mind. If you’re dealing with something difficult, see if any of these ring a bell:
People with autism often have their senses ‘turned up’ either very high or very low. Some behaviours are attempts to deal with this – extreme-looking from the outside, but logical when you know the starting point. For instance, a child who bangs his head on the floor is seriously endangering himself and needs urgent intervention.
However, it may simply be that his pain threshold is extremely high, so he doesn’t feel as much pain as most people would, and that his proprioception (his sense of what his own body is doing) is turned down very low, meaning he needs a strong stimulus to feel where he is.
As a result, the sensation he feels from banging might actually be quite comforting or pleasing to him – a rush like being on a rollercoaster, or a tolerable discomfort that distracts him from his anxieties.
Children with autism often have difficulty understanding what’s happening around them and communicating with other people. Everyone gets tense when they feel that way; for a child with autism, acting out might be the only response they can think of.
Autism can also cause problems with ‘social imagination’, meaning that it can be hard to understand why somebody else is acting the way they are: if you, for instance, refuse to let your son or daughter have or do something they want, it may be hard for them to consider that you might have a good reason for doing so, and they can leap from nought to sixty on the emotional scale because all they can understand is that you’re saying ‘no’.
Autism is notorious for its association with high anxiety levels. Changes in routine, transitions from one activity to another, new situations, all are likely to make a child with autism nervous, and it’s commonly the case that their base-line of anxiety was already higher than most people’s.
A child who’s anxious might act out because they’re stressed; they might also act out because they’re frightened and don’t know any other way of getting out of the situation.
Not all children with autism have problems sleeping, but a lot of them do. None of us are at our best when we’re under-slept, and for some kids it’s a near-permanent state.
What can we do?
When your beloved son or daughter is hurting you or themselves, it can feel like your heart is going to break – or that you’re just going to collapse from stress because you can’t deal with this. Home is supposed to be a safe and calm place, but sometimes it just doesn’t work that way. It may very well not be the child’s fault, and you may very well know that, but even if you understand the reasons, the more extreme of these behaviours can make life at home feel nearly unbearable.
If you’re reaching that point, don’t try to go it alone. Your best bet is to bring in a professional for an intervention and see if they can help you. However, not everyone can access or afford these.
There are charities that can help, but even the most committed therapist won’t be around 24/7. In between sessions, or in the worst-case scenario instead of them, how do you manage? There are no easy answers, but some thoughts that might be helpful.
Firstly: get as expert as you can about spotting the signs. Use whatever you can – verbal or visual communication, AAC, watching body language – so you can tell when the storm is about to break and de-escalate things before they get out of hand. Work on communicating with your son or daughter to minimise their frustration levels, and try to keep things as calm as possible.
Your communication might include a visual list of rules, either with pictures or, if your son or daughter can read, a written list. This helps them understand; it’s also something you can show them if they’re having an episode to remind them that, for instance, spitting isn’t allowed.
Secondly: a useful device is the ABC chart, which is short for ‘Antecedent, Behaviour, Consequence’. If your son or daughter has communication problems, they may find it hard to explain why they’re doing something, but if you can understand, you stand a better chance of coping. The idea behind ABC charts is simple: when your son or daughter engages in a challenging behaviour, you write detailed factual notes of what happened before, during and after.
Antecedent: We were having dinner and I served Son/Daughter from the new saucepan.
Behaviour: Son/Daughter threw their plate on the floor and shouted.
Consequence: We had to stop dinner and clean up.
If you look at both the Antecedent and the Consequence, you may be able to identify clues –though they won’t always be as obvious as in the example, and you may have to add up quite a lot of charts before you start to spot a pattern. ABC charts aren’t just to help you avoid the Antecedents, though they can be helpful there: they can also help you identify patterns in your own behaviour that may be inadvertently reinforcing the behaviour.
Thirdly: develop crisis management skills. Some points to aim for:
Work on keeping calm during the challenging moments. Far easier said than done, of course, but it does improve your chances of success, as your getting angry may make your son or daughter more anxious.
If your son or daughter is getting worked up, rather than trying to make them ‘stop’, try redirecting their attention. If they’re capable of choosing, offering them a choice between a couple of different options can help: that gives them some sense of control, which lowers the anxiety levels. Use a neutral voice, if you can achieve this, as the more matter-of-fact you sound, the more likely the redirect is to work.
If they’re directing their behaviour towards controlling you, you might do better to remove yourself. Whether or not this is safe obviously will depend on the circumstances, and you can’t run away entirely: instead, turn your back or go into the next room, where you aren’t so easy to access but can be on hand when needed.
Think about incentives. If you have a programme set up where your son or daughter is working towards a reward, reminding them that they need to behave in order to get it can give them some motivation to act more appropriately.
After an incident, give them plenty of space and time to calm down.
What if my child is being violent? Can I intervene physically?
As questions go, that’s an extremely difficult one: if your son or daughter has problems with being touched you risk stressing them out further, and full-on restraint can be dangerous if it isn’t done properly. There are physical intervention approaches such as ProAct SCIPr or Team Teach, which you might look into learning if your child is big and violent enough to be a serious danger to themselves or other people.
However, any kind of restraint should be a last resort, and should only be done if you really know what you’re doing. Unless you have proper training, you should stick to milder methods as much as you can.
Experience is likely to teach you some coping methods. For instance, if you’re trying to carry a small child who’s kicking, aim them away from you so their kicks don’t land. If you can manage to keep physical grappling to a minimum then it’ll probably be better for everyone, but obviously if your child is about to do something very dangerous you might have to act first and think afterwards.
If these are the kinds of decisions you’re dealing with, it’s time to talk to a GP, psychologist and/or behavioural analyst, as long-term this is no way for you or your child to live.
I’m struggling to cope
If you are struggling to cope emotionally, your GP should be able to help you. It’s important to take care of yourself if you’re going to take care of your child. There are other services such as Samaritans who you can call if you just need someone to talk to, but whatever you choose to do, don’t neglect your own mental health.
There are, in short, a lot of different options – none of them the easy solution we’d all like. Behaviours that challenge are distressing for everyone and it can be easy to feel like a hopeless failure, or indeed, if there’s a lot of aggression involved, like a trapped victim.
We really must remember that, while there may be things you can do to reduce the behaviours, this doesn’t mean they were caused by you – or even that they’re something your son or daughter does with any malice: most such behaviours are done out of fear, confusion or simple physical discomfort.
Try to focus on practical solutions, try to avoid anger as much as you can, and try not to blame yourself if you aren’t perfect: nobody is. It’s a difficult business, and if you do the best you can, that’s all anyone can ask.
Who can help me?
The Challenging Behaviour Foundation has a lot of information for both parents and professionals to support them with practical advice on how to spot behaviours that challenge and what to do when it occurs. They have produced a really useful top ten tips on negotiating what is required from your local authority in supporting these challenging needs.
Carer’s breaks are what they sound like: a chance for a carer – which, as someone who looks after a disabled person, is what you are – to take a holiday and get some much-needed rest. Below are some more links about carers’ breaks and how the Care Act (2014) can help you: