My Guide to Autism

For the family who’s child has just been diagnosed: the things I would have loved to have known: Sean’s behaviour and the lack of language was his bodies way of telling me there was something else going on under the surface for him. When I helped him with what was going on underneath the surface, the tantrums disappeared , he began to speak and the boy we knew was there, was able to come out for everyone to see in all different situations.

You have done an amazing job already. You know him better than anyone and you have been doing lots of things right. Now, you will have lots of assistance, you won’t be alone anymore. You have been dealing with a lot, with no support and you will have loads of support from now on – this is a very good thing.

The key thing is to make life easier right now for your child so you can start working out what’s going on under the surface. You need to reduce over stimulation in his life.

Bedroom/ Playroom: simple colours, calm atmosphere. Remove all toys from arms reach. Put them into containers so that if he wants something it’s an opportunity for interaction. Play dumb: oh you want something do you want Thomas or James – Oh Thomas – can you say Thomas – if he tries celebrate that with him and just be happy with “Th” to start

Use things that motivate him – does he like sweets? Don’t give him a treat at the moment without using it as an opportunity to interact – take a bag of buttons and put it in your pocket – use the chocolate to help him cope with the things he finds difficult at the moment.

E.g. Say: outside 5 minutes, then inside and chocolate

Go outside, play for 5 mins, then say: outside finished – inside for chocolate

Bring him in and as you get to the door reward him for staying calm by putting a button into his mouth and have something exciting at the front door – like a train – so he is distracted and doesn’t get upset.

You can set this type of situation up for everything that upsets him – you are doing a few things here – you are telling him what’s going to happen next – preparing him for it, this will make the transition to inside easier on him. Then you are giving him the chocolate before he would usually have the tantrum – so that he starts pairing coming inside with something positive happening – I come in – I get chocolate. Soon, you wont need the prompt of the chocolate, but for the moment, use it, you are trying to teach him a whole new way to interact with you and it will take a little while for him to get the hang of it.

His experience of something is only as good as his last – so if he cried coming in the door the last time he associates coming in the door with being upset, you need to write down the things that make him tantrum and then set him up to have a positive experience each time he does those things from now on.

Get a couple of new trains/toys that you know he will like, open them up and keep them in a container hidden. Use these things to help him get through the day. So when you see that he is getting agitated or you can sense a tantrum is coming, stop what you are doing, pull out 1 thing and give him all of your attention for a few minutes. Let him play with the toy and as soon as he drops it, take it and put it away again – so it doesn’t loose its novelty value.

Make a picture chart of his day – this will help him understand what you expect him to do today – it also means there are no surprises for him, it will reduce tantrums straight away.

E.g. picture of getting dressed, car, grannys house, car, collect other kids, shop, dinner, bath, story, bed.

They love routine so try to put a big amount of structure into his day and have some things the same every day. Routine for getting up, eating meals, going to bed etc.

Try to keep going out to public places like the shop etc. to a minimum for the moment. Teach him for a little while at home first, it is much easier for him to learn this stuff at home and then you can transfer it to going to the shops etc. Just take it one step at a time.

Use very few words – to teach him to talk, you need to use few words! He may not understand all the words we say, so just use key words for the moment. E.g. Bath then bed or Play then food. Finished is a good word – he needs to be told when something will be finished and then help him to move on to the next thing.

Try to start seeing things from his perspective – things that we don’t even notice may be bothering him so get down to his level and be a detective. When he has a tantrum – don’t let it distract you, get down and think – why? The next time you might be able to avert it.

A really important thing for you to concentrate on now is eye contact – the more eye contact you get the more he will learn everything he needs to know to catch up. So get down to his level or below his level and play with him. Make it fun, all you want is for him to look at you and when he does, celebrate. Tell him you love it when he looks at you, let him know what you want. Do chasing, tickling – things he loves and then stop for a second and see if he looks to you to see why you have stopped.

Give him time to respond, say something and then wait – can you wait for a response for 15 seconds? It’s a long time so try it out and practise it. Ask him to say something and then stop and wait, give him a chance, ask again and wait. This really works. Sometimes when you ask and don’t wait, he may not have had time to process that you wanted him to say something.

Number 1 thing: your child is perfectly happy and oblivious anything has changed, so take the time to work through this yourself, what it means to you, how you feel. He needs you to take this time for yourself and to get yourself to a place where you can really be available to him, to be present, in the moment and to be his advocate. The same applies to your relationship with your husband, this needs time and work. He will be having a totally different experience and you need to invest the time in him and your relationship so you are both stong and clear about your plan. Working together, on the same page. This is vital before you do anything else, this is the number 1 priority.