Dan is non-verbal. Well, that’s what I usually tell people when they first meet him because it’s easier than trying to explain the ins and outs of his oral communication abilities. But he’s definitely not mute. You can ask his sister, Bec, about that! Dan loves to sing – at any time of the day or night. Sometimes it’s a whole verse and sometimes it’s just one line, over and over, like a needle caught on a broken record. Dan can say words. He can identify people and things he knows, repeat words and phrases, but he cannot hold a real conversation. So I just tell people he is non-verbal.
It’s quite amazing what people assume about the non-verbal. I’ve lost count of the number of people who express amazement at how well Dan knows his ABCs or the numbers up to ten. They are usually stunned into silence when I tell them he can read, knows the numbers up to one thousand, can add fractions and calculate percentages. Although Dan can’t read at an adult level, he does recognise almost all the regular sight words and has quite a large sight vocabulary of other words. When he was very young, before he started school, he loved The Wiggles. He could pick out a Wiggles video out of a stack, even though the only thing that was visible was the label on the side – and even when it was upside down. Somehow he recognised the shape of the word. Like many people with autism, he is a visual learner.
Before Dan’s diagnosis, a speech delay was suspected and we began to introduce signing. Well, Bec picked up the signs almost immediately and she was the one who could speak perfectly well. Dan took a little longer, and signing was okay but it was limited to those who knew the signs. After the diagnosis of autism, we were introduced to PECS (picture exchange communication system) and it was a great breakthrough. Dan could request things and make choices. We made up a big folder with all the pictures and it worked really well at home but it was rather cumbersome in other environments.
Over the last few years, I’ve seen kids and teens with autism use iPads as a communication device and I’ve been really keen to try one with Dan. He picks things up pretty quickly, as long as it’s not toileting (but that’s a story for another time). Even when you think he is not paying attention, he is taking everything in. He just can’t get it out. And like his sister, he’s pretty quick with technology. Despite all this, our journey towards a more effective and age-appropriate communication system has been frustrated with stops and starts, changes in therapists and differing opinions on what is right for Dan. But finally I hope we are on our way.
I know the visuals work for Dan. We use them for his everyday routines. Dan is usually pretty good with the morning routine except that he always needs prompting to do the next step. This is something we’ve been working on, but our recent trip to Adelaide caused an unforeseen ripple in the morning routine. While we were in Adelaide, I bought Dan a new shirt to wear at his grandfather’s 80th birthday. Dan must really like this shirt because he has wanted to wear it every day since we got back. It’s a really nice shirt but it’s just not suitable for him to wear every day for his group activities at Yellow Bridge.
The problem is that once Dan has done something once, it becomes a routine for ever and ever. It just took one morning for the new shirt to become entrenched into the morning routine. It didn’t matter how many times I said to pick a different shirt or take him back to his room to change, it happened every day.
We’ve been trialling a little communication app on my iPad, just to see how it goes. Its not proloquo2go but works in a similar way. It’s just very basic and so far so good. I used it to make up a board about getting dressed and so this morning we went through it before he went off to get dressed. Voila! It worked. He came out first time, without the new favourite shirt and appropriate dressed for the day. Visuals make such a difference.
I am really looking forward to seeing how our journey progresses. I know there is so much that Dan knows and just can’t express. I would love to be able to have a conversation with him that is more than a learned pattern of responses. I would love for Dan to be able to communicate and interact with others on his own terms. I want Dan to be as independent as possible and lead a happy and fulfilling life. And an effective communication system is the key.