Why It Appears I Let My Autistic Son Get His Own Way

As usual my son is the first to wake up. It feels like I have only just got to sleep. I probably have. As he makes his way downstairs he switches every light on he passes, takes a handful of teddies with him and finally settles down on his chair with his two iPads before screaming for the TV to go on. His presence defines the household. His demands can seem relentless and his screaming earth shattering.

To almost anyone who reads about him, comes into my home or works with him, the impression is the same: I let my autistic son get his own way.

What people see is just the tip of the iceberg and the reason I am writing this post is to show that what can seem on the surface one way isn’t always the case.

My son is ten, he has severe autism. He has no spoken language. He has epilepsy. He has a progressive genetic condition. Most importantly for this post he also has something known as violent and challenging behaviour.

Violent and challenging behaviour in children with additional needs like my son is much more common than people realise. The reason is simple: people don’t talk about it. There is a shame that comes with it, as well as judgement, embarrassment and fear.

My son used to injure me. He would kick, punch, pull my hair, bite, destroy things, scream, harm himself and throw anything he could get his hands on. He was frustrated, angry and violent, both to others and himself. I couldn’t ‘have words with him’ as his understanding was (and still is) that of a one year old. He had no concept of being grounded since he never left the house without me or went anywhere and taking things off him proved counterproductive as he made absolutely no connection to the removed item and his behaviour.

I needed to understand him better not punish him. I needed to realise what was driving his behaviours, even when he couldn’t tell me.

His behaviour was similar in school and home so this wasn’t simply a parenting issue or an education issue, this was a behaviour issue that needed addressed consistently and with a lot of patience.

So what changed?

Well firstly I realised my son wasn’t being controlling. He was anxious.

He wasn’t being hurtful or selfish when he injured other people or property, he was dealing with emotions he had no idea how to cope with.

He was confused, upset, had unmet sensory needs, frustrated at an inability to communicate and be understood and he showed this in the only way he knew how.

Behaviour is one of the biggest and most effective ways we all communicate.

He needed things to change and that change started with me. I put in place a very low arousal home life. To the outsider it may look just like my son gets his own way but realistically we are actually all getting our own way instead because the entire family is now safe, our property is safe, and most importantly my son is safe.

My son does get to wake when he wants, watch TV when he wants and choose his meals. He has access to his iPad from the moment he wakes and when he wants a bath I bath him.

People can think what they like but by responding to his natural body clock and going with the times that suit his natural rhythm he is calmer, happier and more settled.

By allowing him to watch the TV he wants I am actually calming him as he uses the schedule of a well know children’s channel to know when his school transport is due, when it is time for his bath and when mealtimes happen. This eases his anxiety and helps him make sense of his world.

By letting him choose his meals he feels much more in control and less anxious as he then knows not only what is coming but when it is likely to come too. Surprises make him anxious, and therefore more likely to be violent.

As for the iPad: well it turns out this is his very means of communication, his voice so to speak, and without this he has no means of showing me what he wants or even if he is unwell. To deny him that is taking away the very tool that allows him to be understood.

Then there’s the bath: this is fundamental to his mental well-being and triggers him to know it is time for winding down for bed. By making this a time for arguments or battles because the time wasn’t convenient for me was one of his biggest triggers for his behaviour. I was inadvertently saying to him that it was my way or no way, which made him feel invisible, out of control and helpless.

Low arousal for us is about letting my son know that he is understood, loved and accepted for who he is. This is his home and he needs that place of sanctuary and escape to be able to recuperate and relax in order to face the world. He needs to feel like his needs are met and that the atmosphere is one of calm and love not anger and frustration.

Many would say I am doing him an injustice by allowing him to ‘have his own way’. The argument is that in the ‘real world’ this is unrealistic. I understand that totally but my child’s ‘real world’ isn’t going to be about an employer, a spouse and following the rules of the road as a driver. My son will have carers, support workers and respite staff and it is vital that they are not attacked in the way I used to be.

Low arousal isn’t about letting your child dictate. It’s about understanding, listening, responding and meeting the needs of our most vulnerable children when they need it most. It’s about responding to the communication that the challenging behaviour and violence actually is and recognising that a child is struggling and needs help.

You might see a child appearing to get his own way. I see a child who is understood, calm and happy.

Until you have lived through what I have you may never understand. I don’t judge you for that, I just hope you never have to experience it.

I Could Hate Autism…but

I could hate autism tonight.

I could hate the fact my son has caused so much damage to my house again, both in financial terms and in emotional terms. Things of sentimental value smashed, toys broken, floors flooded, window blinds torn. I could hate the fact he has screamed for hours on end in frustration and anger and attacked anyone who came near him. I could hate the fact his sibling is having to deal with all this and live in a volatile situation she has no control over.

When the child who has caused the damage has a diagnosis of autism I could hate autism so easily, but I don’t.

Many would argue, and I would have done so in the past too, that my son’s autism is to blame for tonight. It was his rigidity of thinking and inflexible thought processing that were the triggers. It was the fact he could not control everything and his sheer need for set routine that started it all. It was the fact his communication needs are so high and he was frustrated at not being able to verbally say what he wanted. It was his lack of social awareness and inability to understand others viewpoints that meant he caused thoughtless damage to other’s property. Everyone of these things are key traits of autism spectrum disorder after all, so surely autism was to blame for it all?

Autism isn’t why my son is violent. Autism is not always the reason my child has meltdowns and screams.

There is more to my child than autism.

There is more to anyone than autism.

Let me be clear: autism does not make people violent. I do not hate autism.

Am I upset about my evening and the damage that was caused? Yes very much so. I am more upset, however, at the fact people will see tonight as something fundamentally down to severe autism. Severe autism does not mean a child will be violent. I can not stress that enough.

Let me say this: my son is 9. Yes he has autism. Yes he has no verbal communication. Yes he has learning difficulties and other complex needs. His challenging behaviour IS linked to his complex needs and these do play a factor in what happened tonight but they are not the full story.

I could hate autism but I don’t.

Instead I hate the fact I misjudged my son’s level of anxiety to the point I let him get to the stage of full meltdown.

I hate the fact my tiredness and frustration meant I never showed my child the patience and understanding he needed.

I hate the anxiety and frustration my son felt because his world felt so out of control and unordered because I never ran his bath at 6pm when he felt I should.

Autism was’t to blame for tonight: I was.

My son is a vulnerable child. Whilst he does need support to learn to wait and be more gentle (as does any child,autism or not, and many adults too!) he also has a right to be understood, be listened to and have his needs met regardless wether he can speak or not. I am the adult in all this and it is ME who needs to change and mature not him.

Do you know something…my son could have had a bad night, been frustrated and had a challenging evening even if he didn’t have autism. He is a 9 year old boy with developing hormones, a growing body and determination like any other child. We all get angry and children need space to be forgiven and grow as much as we all do. Have I ever wanted to throw something in temper at times? You bet I have. I have just learnt as an adult that there are better ways to deal with anger. My son just needs time to learn that too. Autism and learning difficulties may mean that takes a little longer and it’s my job to be more patient during that process.

In all the chaos of tonight, in all the broken toys, wet floors, and smashed items I found my son had done this on his bed. A line of cars to remind me how beautiful, ordered and perfect autism is.

I could hate autism but there is nothing about autism to hate.

Just to add I ran that bath, apologised to my child and we made amends. Yes he has autism and learning difficulties but his laughter, his energy, and his forgiving spirit know no bounds. One of the most amazing things about his autism is he will wake up tomorrow with no agenda, no grudge and a love of life that makes everyday wonderful.

I could hate autism but I love my son far too much for that.