If you follow my twitter or facebook page, you probably have noticed a lot of Communication Shutdown tweets and status updates over the past week or two. I've signed up for Communication Shutdown, November 1st, - which means I won't be using Facebook or twitter (or blogging) on that day - and their app automatically makes the updates from time to time, to spread the word. Communication Shutdown is a global fundraiser for autism where everybody around the world can make a donation to an autism organisation in their own country. You can donate without doing the shutdown, of course, but in our online world, freezing these methods of communication is a pretty smart way to make a point, I think.
More than raising money, it is about raising awareness about Autism and acknowledging the difficulties with communication that people with autism experience.
Have you ever travelled to a place where they speak a language foreign to your own? When we went to Paris, I was armed with my year 8 and 9 high school French, and a phrase book to refresh my memory. Most of the time I could say what I wanted to. At least, I thought I did. Though even then, if I was speaking more than a couple of sentences, it quickly became clear to whoever I was speaking to that I didn't entirely understand what I was saying, or at least that it was taking a lot of concentration.
Often I could understand what people said to me. That is, I could pick up a few words to get the idea - at least, I thought I did. I didn't have any real way of knowing for sure. And translating a word or two is a world apart from understanding implication, informality and social nuances. After a couple of days, I tended to stick to the same few phrases that I was confident using, and avoid unnecessary conversation. I was enjoying myself just watching the Parisian world go by, without needing the stress of trying to interact with it, to understand and use their language.
This is the world that my oldest two children, Sienna and Ash, and all the other people on the autism spectrum, live in every day. To different degrees, of course, with some not understanding a word, and others not interacting at all, and some thinking they have a fairly good idea of what is going on, only to find themselves overwhelmed with uncertainty and frustration when they realise that they don't understand after all.
The difference is that they don't have a native language, and a homeland where everyone understands, to fall back on. With a kid like Ash, the language that he has at his disposal doesn't make enough sense to him to be able to use it effectively. So he finds the words that he does understand, and uses them often. And when he can't find them, he might use his hands or feet instead, or perhaps yelling and screaming (or all of the above), lashing out with the emotion he is finding too hard to express with language. The truth is, he has progressed a lot over the past year and a half, and often growls at me "I don't understand!", or occasionally "you don't understand!" Verbalising it is a great victory, giving us a common ground to work from.
Sue Larkey likes to say that "to know one person with autism is to know one person with autism". So an insight here and there is not a magic method for understanding everything. But with every person who seeks insight and understanding, rather than making assumptions or relying on preconceptions, this social world that we live in might just become a tiny bit easier for people with autism to live in it too.
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