The hardest thing about having a child with autism, is that it can be almost impossible to communicate with him. Communication skills are so important in daily life that doing without them can be really difficult. It can be so painful to watch them cry and be unable to do anything about it, because you have no idea what is causing it. Even if you do know why they are upset, often you can’t fix it and can’t explain to them why. My worst memories as a parent are of times like this.
It is important to note here that communication is not just about talking. Every parent of a neurotypical kid that has just read the previous paragraph has the same thought right now. ‘Well my son/nephew/cousin’s wife didn’t talk until they were four and they are the Prime Minister of Hungary’. Firstly, I don’t actually care. Their son/nephew/cousin’s wife’s inability to have their needs met until they were four does not in fact give me a lot of comfort about my own son’s unhappiness.
But more importantly, parents of neuro-typical kids don’t understand that communication is not all about being able to talk. It is about how much you can understand other people and how well you can get them to understand you. If I were suddenly transported to Japan, (wouldn’t that be nice) maybe to some small city, and I got sick, I would have ways of communicating with the hospital staff. Even if they didn’t speak English, and I didn’t speak Japanese there would be ways to communicate.
You see there is so much more to communication than just words, although understanding words is also important. There’s eye contact, body language, facial expressions, pictures and there’s gestures. ‘Normal’ parents don’t understand the importance of these things because they take them for granted. They just start to happen, all on their own, usually well before a child starts to talk. Even the way babies show a preference for listening to their parents speak and watch them so carefully helps them learn to do so themselves. The back and forth babbling, are conversations in the making. All of these are things that children with ASD will have trouble doing.
Babies start to use most of these a long time before they get to words. Whenever I watch videos of my niece or nephews when they were little, I could see all the ways they had to communicate. The way they tried to imitate words with their adorable babble. The way my niece could look at a few flashcards and find the doll, or the ball, or the sock. She could do that before she could walk. My son can’t even come close to doing that now, at nearly three years of age. He can’t even do it with physical objects, let alone flashcards.
One reason for the problems that children on the spectrum have with language and communication, seems to be an underlying problem with ‘symbols’. They might have problems understanding that a word, a picture, or a gesture is a symbol for something else. That it has some sort of meaning. This is why teaching them to communicate in some of these other ways can often ‘kickstart’ words and speaking. Sign language and PECS are two methods often used to help children on the spectrum that are non-verbal have their needs met.
Michael has been doing therapy for over a year now and he is not up to speech therapy yet. This is because at this stage he doesn’t use sounds to request things, and he doesn’t imitate them. When he does babble, it is just because he likes the sound of it, not as a way to get something else, or to describe things.
In order to start ‘speaking’ other building blocks need to be in place. Imitation skills are very important, since speech is imitation. Being able to establish joint attention is also a prerequisite – he has to know that what I am looking at is what he is looking at, and that it is called a ‘ball’. Many of his programs this year have been about teaching him these skills. They will certainly come with time. And once they’re in, then it’s speech therapy all the way. But for now, he needs other ways of communicating his needs to us that don’t involve screaming.
But it’s way too easy to get bogged down in what he can’t do. There are many things that he learned this year that have meant he so much better at communicating his needs, and therefore much happier.
The first steps in Michael’s language journey have been incredibly basic, and very important. They have been things like learning to turn to a sound. Reacting to his name. Responding to a voice by turning towards the person speaking. Following a point to look at the picture/object being pointed at. Looking at something when I say, ‘Michael, look’. All of these things are freely done by very young children, and most of them had to be taught to Michael one step at a time.
He will look and smile at me as we play together in our social games. At the moment the ‘Itsy Bitsy Spider’ is a favourite, although these change every day. He can follow a point to put his toys away or his clothes in the hamper, even if he doesn’t understand the instruction itself. If I say something like ‘stop’ or ‘no’ he will, at least most of the time, actually pause momentarily in his actions. He might even actually stop and look at me. It is glorious, and the result of hours of hard work.
More impressively, he has about thirty ‘commands’ that he can do now. Things like ‘give me’, ‘put in the bin’, or ‘sit down’. We need to practise all of them every day as he forgets the ones that we don’t maintain. We also make sure we practise them in a row, so there are no contextual clues – for example, if you say ‘sit down’ every time you put him near a chair, that is a clue. These commands have been so useful in daily life – nappy changes have certainly become easier.
The Importance of Using Very Simple Language
The key to teaching Michael language has been to modify my expectations. I naturally talked a lot with him. I used to read to him for hours every day as a baby (back when he liked it) and would describe everything I did. But now I tone it down. I still do talk to him all the time, but I do it in one or two word phrases. I might say ‘ball’ if he is playing with a ball. Not ‘oh look at this red and shiny ball, how cool is that ball’.
I try not to ask questions, even though it is natural to do it when talking to a baby. Describing things works better. I might say, ‘go in the pram and we will go for a walk’. I don’t say ‘do you want to go for a walk? Can you find the pram?’. Whenever I hand him anything he wants, I will say the word for it. Just one word. iPad, fork, bottle, lamb. Whatever it is, keeping it as simple as possible is the best way to make sure he actually understands what I’m saying.
Teaching Gestures and their Meaning
Neurotypical children communicate very naturally. They just somehow learn by osmosis that nodding your head means yes and shaking it means no. My niece was pointing where she wanted to go when she was 9 months old. Michael however has no idea about any of these things. They all need to be broken down, and taught to him in pieces.
We spent six months teaching Michael to point (just physically point) and now we are teaching him to choose from two items by pointing. He knows how to point to nearby objects but not yet far away ones. At the moment it is not a communication method for him, just a skill he is mastering. But eventually it will be.
I cannot emphasise enough how much you can’t take any kind of assumed knowledge for granted. Nodding. Shaking the head. Waving. Following a gaze to see what the other person is looking at. They might not intuitively understand any of these things, even if they sometimes seem to shake their heads or nod. Michael has no idea what these things mean. But he will with time and effort. Absolutely everything can be taught. It’s just a matter of deciding what you want to teach and what is less important to you.
Replacing Unacceptable Behaviour
Which brings me to my next point. There are some types of communication that are not acceptable. Hitting, biting, pulling hair. Especially of other children. A child should never get their preferred toy or item as a reward for screaming or for violent behaviour. It can be so much easier to just go to something and scream as loud as you can until your parents run over, figure out what you want, and do it for you. Anything to stop the screaming. Why would you possibly learn to communicate in a different way if you can get everything you want just by screaming or whingeing or throwing a tantrum?
But you don’t just ignore tantrums. There need to be other ways your child can communicate. So what I did at the start, when Michael used to tantrum often (think almost non stop in a two hour session) is I would wait until he calmed down. Then I would prompt him to reach for the item (the most basic thing to do at the time) or prompt him to get the PECS card and give it to me.
One example for us has been with Michael’s cartoons. Only recently if the cartoon he liked ended, he would throw a tantrum. It was his way of making us change the cartoon, or put it on again. Clearly, this was unacceptable but just ignoring it would be cruel as he would then have no other way of asking for help. So we made an ‘I Need Help’ PECS card. Now every time he wants me to change a cartoon, he gives it to me. No bad behaviour. No frustration. Problem solved.
The PECS Communication System
Of course the best way he has of communicating has been his PECS book. I will not go into the technicalities of teaching a child to use PECS – but if you buy a PECS book starter kit they usually do come with instructions. Basically the end goal is supposed to look like this: your child goes to the place where the PECS book is kept, brings it over to you, gets the picture of whatever they need and gives that to you. It’s a pretty light folder with Velcro pasted on, and you make the flash cards yourself. Mostly they are laminated pictures of items they often request. Usually it is kept with the child wherever they go, and can be used in preschool etc.
The aim with PECS books is that eventually they are augmented with other forms of communication (for example a program that says the word as well). Or it kick starts their own talking process and maybe eventually they don’t need it anymore. It is a tool used by speech therapists in combination with other things and is very useful. I highly recommend it to everyone especially if your children are having trouble with language skills.
Use Every Opportunity To Foster Communication
The main thing to do, to foster communication with your child (whether receptive or expressive) is to become a steroidecopter parent. That’s a helicopter parent on steroids and yes it’s a word I just made up. You have to watch for every tiny little attempt your little one makes to communicate with you. And grab it, and reward it. Always remember that social rewards like saying ‘good girl, good boy’ will likely mean very little to a child on the spectrum. So go for tangible rewards.
Did they make a guttural sound while reaching for their favourite toy? That totally counts as initial vocalization. They get their toy, and their favourite food, and thrown up in the air. Even if they just reach for something instead of screaming, or point, or grab your hand and are persistent about it. It all qualifies for huge massive excitement. In order to notice some of these things you have to watch your child in the way a kitten watches a paper mouse. Especially to begin with. But the more you respond to these first little attempts at communication, the more they will be encouraged.
The great thing is that in the past year Michael has started to request things without screaming. He now takes our hand and leads us where he wants us to go. He can also take items that he needs help with and brings them to us. It has been a huge breakthrough for us because he now realizes that if he needs something he needs to find us, get our attention, and then persevere until we help. There are many children much higher functioning, with more words than he has, that could not do all of these things.
He has learned quite well to initiate with PECS as well, and give us pictures of what he needs. He has a long way to go in terms of discrimination – being able to tell which picture means what object – but at least he understands the basic principles. And he’s improving in everything all the time, which is the main thing.
The main object with communication training of course is to increase our little one’s happiness. He can have ways of getting his needs met, even if he is never verbal. If he is, it is an alternative method for him if he forgets his words or gets stressed. But it is also a great way to decrease his frustration with the world, and improve his connection with other people. It doesn’t matter how small his steps are on the way to this goal. What matters is that he is making progress in it every day.