To communicate or not to communicate - when to leave well alone...

Tristram failed to develop normal language and communication skills - a common feature of the child with autism. When he was a toddler he would avoid eye contact and if he wanted something he would take my hand and lead me to what he wanted. Obviously when he was very young I would give him what he was showing he wanted. However, I later tried to get him to communicate more effectively by 'not understanding' what he wanted. I learnt to offer him choices such as milk or juice and he would point. Making a decision is a huge leap for a child with autism. However it is easy to choose from what is offered. Refusing to choose is an even bigger leap. I was overjoyed when Tristram learnt to say "No"!

But of course I'm making it sound far too easy. What happened when I just didn't get what he wanted? Well the inevitable meltdown of course. I mean mega tantrums from Hell. He would throw himself to the floor and bang his head repeatedly on the floor. If he was on my lap he would bite me along my arms or lean forward and launch himself backwards against my chest. Very painful when it first happened... 

The first thing I had to learn was that despite him being 2 - this was not a case of the 'terrible two's'. This was something that would last for many more years and the family would have to learn to deal with it. The question was how?

I didn't get a proper official diagnosis of Tristram's autism until he was 3 but I had had a good idea that we were dealing with autism even before he was 18 months old. Yes his symptoms were THAT obvious. Managing a child with no language, or very limited communication, is frustrating and difficult for the person caring for the child with autism. However the important thing to get your head around is that this inability to communicate is often the reason for the meltdowns. So you have to put yourself into the world of the person with autism because it is almost impossible for them to jump into yours without a great deal of support and help. And even then your world is never quite right and doesn't always make sense.

How frustrating must it be to be in a strange society where you do not understand the language, the customs or the social norms for that society? You have no information to refer to and basically you have to wing it. That is how a person with autism feels most days. Gradually, as you mix with the society you may become accustomed to many of the behaviours and even recognise the odd word here and there but somehow the rules seem to change all the time so it is difficult to keep up. For me to understand this I think of the rules of cricket. But I can live without understanding the rules of cricket. A person with autism doesn't have the choice of opting out of this strange world they have been thrust into so they have to find ways of adjusting and/or coping.


Now a meltdown may seem an odd way of say "I cannot cope!" but this is exactly what the person on the autistic spectrum feels like if they 'kick off', apparently without warning or reason. Trust me - there will have been both warnings and there will be a good reason but you have to learn to look out for them because your child cannot tell you why they feel out of control, angry, frustrated, upset, hurt, etc. This may not be much comfort to the parent or carer who has to look on helplessly or try and intervene to stop someone getting hurt. 

Now everyone is an individual and a child with autism is no different. The meltdowns may look the same but that doesn't mean they can all be treated the same. The first response is to want to take control when the child kicks off - and quite rightly you have to make sure they're safe. With Tristram I learnt to back off a little and allow him to 'express' himself and assess the situation. If he was banging his head against a hard floor then clearly this was not good for him. I reduced the furniture in the living room to a couple of sofas, a huge soft rug, a box of toys and a very well protected television. (Okay, no television screen is completely safe but there has to be a way of playing the whole Teletubbies/Thomas Tank Engine/Lord of the Rings/ Harry Potter films over and over again - I will leave obsessions for another blog entry!)

The sofas had lots of loose cushions which could be scattered on the floor near Tristram to reduce the possibility of him hurting himself when he threw himself about. The rug helped avoid the potential to hurt his head when he banged it repeatedly on the floor. Most importantly I avoided touching him or trying to talk him out of his tantrum. I had to get used to sitting quietly so I could watch him out of the corner of my eye to make sure he wasn't harming himself. Others would quietly leave the room so there was only one person in attendance. Basically we had a routine to try and reduce the level of arousal in the room and allow Tristram to work through his tantrum. 

But when he came round there was still the problem of why the meltdown had occured. Frustration with not being able to communicate their needs is a common reason for a tantrum to occur and while it is expected in a child of 2 it becomes much more difficult when the child is older.

The important thing to remember is that the child may be distressed because in their heads they have tried to communicate their needs to you but these have been lost in translation. Imagine the frustration of desparately needing a drink but the other person has assumed you want something to eat and insists on presenting more food when you protest rather than trying an alternative solution. Your child is NOT being naughty or just trying to annoy or wind you up. There may be hundreds of reasons why they have lost it - and you have to try and identify what that reason is if your child cannot tell you.

And remember, your child might be frustrated because they didn't get the drink/toy/programme they wanted - and no, that does not make them a 'spoilt brat'. We all have needs and wants and this is not unreasonable. Getting upset because you cannot express that need is not naughtiness. But sometimes your child might have simply had enough of 'whatever' and had to deal with it the only way they can. A meltdown can be a way of removing themselves temporarily from 'stuff' and they might not actually want or need anything other than to know they are safe and that you'll still be there when order is resumed...



Please reload

Featured Posts

...and how we keep doing what we can!

November 14, 2015

Please reload

Recent Posts

November 14, 2015

July 28, 2015

Please reload

Please reload

© Copyright of Organisation of Anti-Convulsant Syndrome (O.A.C.S) 2/2014 Registered Charity no. 1116497