Sunday, August 3, 2008

Mummy what's Asperger's Syndrome?

'I know there is strength in the differences between us, I know there is comfort where they overlap.' Ani Difranco


'Mummy what's Asperger's Syndrome?' This is what Robin came home and asked me last week. He had seen 'Asperger's Syndrome' written next to his name at school and said that it was 'his sickness.' He had carefully copied it onto a piece of paper and wanted to Google it straight away and find all about it.

I froze. He had taken me completely by surprise. I always knew that this was a conversation that we would have, but I didn't think that it would come so soon. I wasn't prepared. He was still so young, I wasn't sure how much to say. As it happened I was already on the computer working and so I asked him if we could look later as I had to finish my work. I thought he might get side-tacked and forget about it, but of course he didn't.

Firstly I wasn't sure how he had got to Aspergers as Robin has autism. I called his aide at school and told her what had happened. She apologised profusely and said there was a note in the teacher's records in his desk which was kept locked, but not in the class register. She also was aware that Aspergers was incorrect and had the data amended immediately and also removed the records from the classroom.

This didn't help us much at home however, as Robin is nothing if not persistent. My husband and I had a talk and decided to tell him the truth, which was that he didn't have Aspergers and when he asked again what it was, we told him some of the symptoms that you might see. He thought about that for a while and said 'but I do some of those things.' I agreed but told him that he was different again. We talked about my nephew who has Down's. We regularly see a neighbour's daughter waiting for the bus who also has Down's. Robin had mentioned that her face was 'funny'. I had said at the time that we were all different, just like having blonde hair, brown eyes or being left-handed. We are all different from one another in some way, but the same in so many others.

We told him that there was something called a spectrum and that people with Aspergers were on it, and also some people who were autistic. I said that people with autism might have a bit of trouble reading faces and understanding body languade, or perhaps being able to express emotions easily but that there were other gifts that they might have that others may not. He promptly told me that he didn't have any trouble reading people's faces. I said some people with autism see things in great detail and might be great spotters. He loved this and said 'I'm a great spotter, you are always saying so Mum. Cool', and off he went.

That was that. I wanted to laugh out loud. I don't know what I was expecting, but I was just so relieved that the first talk had been so straightforward. Later that week I asked Robin whether there was anything that he wanted to ask me or Dad? We were there at any time if he wanted to talk. He said 'Ok thanks, not right now.' I will ask him again in a few weeks and see how we go. I had been worrying and half dreading the day that we talked about autism. I just wasn't sure how Robin would react and I was so worried about getting it wrong. I want him to see himself as the wonderful person he is and be positive about who he is. I was concerned that if we didn't get the right approach he might see himself as different but in a negative way, rather than we are all different and all the same. Some people are better at some things, but not so good at others.

Hopefully he will grow to embrace his uniqueness and achieve all he wants out of life. I am just thankful that we can now talk openly as a family if and when the need arises. It's always true that the things you worry and angst about the most are generally the things that when it comes down to it, are the things that just happen and resolve themselves. In a way I am glad that I hadn't got a rehearsed speech ready, I don't think it would have come across in the same way and we might have had a very different result. So I guess what I would say to others is that we all worry about how our loved one might react to being told that they are on the spectrum, but just be honest, talk from your heart and let them know how special they are to you, their family.


'Our greatest strength as a human race is our ability to acknowledge our differences, our greatest weakness is our failure to embrace them.' Judith Henderson

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