Communication difficulties and autism go hand in hand. It might be misunderstanding facial and body cues, taking things too literally or just physically getting the words out. Dan’s communication difficulties were the first indication that something was different. It was a very frustrating time for all of us. There was a lot of pointing, leading and screaming as Dan tried to communicate his needs and wants. Over the years we trialled a few different communication systems, from Makaton signing and the Picture Exchange Communication System (PECS) to a specific communication device. Each system had its benefits and disadvantages.
Makaton is a form of sign language which uses key words. It didn’t require any special equipment apart from hands, however it was the child who did not need to use the signs, Bec, who was the one using them. Dan, the child with the communication difficulties, took some convincing initially to use the signs. Signing was effective but it only worked with people who also knew the signs.
PECS involved the use of picture cards called Compics – Communication Pictures. The exchange part of the system was very important because it taught Dan that communication is a two-way process involving other people. He had to physically take the picture and give it to someone and in a sense, this is what communication is all about, the giving and receiving of messages. It took a little training for Dan to get the idea, but I can still remember the day he first used the cards to initiate a request. I was so excited I felt like running out into the street and telling everyone. PECS was a great system because anyone could read the cards and know what Dan wanted. It did require a laminator, though and metres of velcro dots (I should have bought shares in a velcro company!) and the folder that Dan used to hold the pictures was a little cumbersome to cart around.
Then towards the end of primary school we were able to access some funding to get a small hand held communication device. This device used the same kind of Compics as PECS but also had speech. Dan actually learnt some speech by imitating the sentences verbalised by the device. It did work, as long as teachers and aides used it. And this has been a primary issue – communication systems only work as well as those who know how to use them and actually remember to use them.
The introduction of iPads, iPhones and other devices has opened up a new world for those on the spectrum. For quite some time I had been keen for Dan to try using an iPad for communication. He is pretty quick at learning how to use technology – you just have to ask his grandmother about that. He kindly updated her apps on her iPad without her knowledge. Well, finally Dan has an iPad and is using it to communicate but it has been a very drawn out and frustrating process.
a necessary and reasonable support
You would think that a device that enables Dan to communicate would be a support that is both necessary and reasonable. Unfortunately, the NDIS didn’t seem to see it that way. We were able to access funding to trial different types of software. There are a few different ones on the market and we needed to know which one would be right for Dan. One size does not fit all. We eventually settled on a program called Snap+Core First. The next step was actually get an iPad for Dan. This was something the NDIS would not fund, even though it was going to be specifically used as a communication device. They would fund a specific communication device but not an iPad. I suppose they thought it would be just used for entertainment! So we bought the iPad.
Then we had to get the software. Simply a matter of downloading it from the App store, right? No, not so simple. The NDIS would fund it, but we could only purchase items from NDIS registered providers. Apple was not a NDIS registered provider. Fortunately this was easily solved by purchasing some iTunes cards. Now Dan should be ready to go.
No, not quite yet. During the week Dan is out and about in different places with different support workers. How could we be sure the iPad wouldn’t get lost or dropped? We have already had so much trouble with losing hats – four hats in one month! And before that, it was losing his wallet – at least four times too. Sometimes I do wonder what is going through some support workers heads when they are with Dan. So a better case and shoulder strap would be required but this had to be ordered from a disability supplier. Now this was something the NDIS would fund, but for some bizarre reason they would only forward the money to purchase the case in dribs and drabs. By the time we finally got the full amount, which was not a huge amount to start with, the price had gone up!
More than a year after we completed the software trial… we have now got the iPad, the software and the new case and Dan has started taking it with him every day to Yellow Bridge. Dan has been very quick to learn to use it. He is able to construct sentences, request items, ask questions and make comments. He even knows how to add new pictures and words to the categories and how to use the search function when he can’t find the word he wants. He also loves using the camera to take photos of the places he has been. He likes this so much we have multiple copies of everything! I think he just likes to stand there and keep pushing the button! Dan still needs to be encouraged to get it out and use it – initiation has always been a challenge – but it has opened up a whole new world of possibilities for Dan.
Now we just have to train the workers…