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Where the Autism stops?

September 22, 2012

Sometimes I think it is really hard to know where the Autism stops and the child begins. It seems more apparent during teenage years when you have all the usual battles with hormones and feeling differently about yourself anyway.

I remember when Tobi was younger he went through regular annual spells of being seriously hard work. Easter was always a trying time. From a very early age this time of year was horrific in our house. Not just the regular naughty stuff that a kid would do but he added to this by doing ridiculous things like running into the bathroom and emptying all the toiletries down the sink then say it wasn’t him. He could never sit still in any case but during spring this would be taken to a whole new level of fidgeting. Some days it was as though he was possessed. He knew what he was doing was wrong and he knew that he would get into trouble for it, but he just could not help himself.

At school he was exactly the same. It got to the point where we bought a little blue book and after every lesson he would hand his book to the teacher in charge who would write notes about what he had and hadn’t done and then sign it off. At the end of each day either Rob or I would collect Tobi and his sister from school and go through this book with Tobi and the deputy head if needed. Yet nobody at the school recognised that there was something a little bit deeper going on. He struggled reading and writing, his attention span was pretty much none existent, and he was just hard work in general.

It didn’t take long for Tobi to become quite adept at noticing little things about people. He couldn’t judge by your face what mood you were in, or if your smile was genuine, but he would know instantly if you had new shoes or your hair done differently and he soon learnt that letting people know that you had noticed these things, made them feel good and be nice. Along with this new found talent came a rather indignant manner. Somehow, I think, Tobi felt like a bit of a puppet master. For the first time in his life he could change people, steer them off course, make them lose their train of thought by being lost in the nice things this young boy was saying to them. He learnt to speak in an affected but quite posh accent (all be it monotone), and with his vocabulary being quite advanced for a boy of his age he found that he could engage (on some level) with the adults in charge therefore getting him out of having to do the things he struggled with.

He learnt to hold a person gaze, which is hard when you’re Autistic but this has turned into a dead eyed stare which can be quite unnerving if you don’t know him. Even the specialists we have seen have talked about this being quite odd and uncomfortable.  If you manage to look beyond the stare when you are talking to Tobi, and you know him well, you can almost see the moment when he switches off and his eyes seem to die. He stays looking at you, often without blinking or moving his head at all. He also learnt to smile. A huge great beautiful smile, but only with his mouth. Sounds odd I know, but when you talk to Tobi if he likes you he will mimic you. If you laugh, he laughs. If you cry, he cries (or tries to). And if he doesn’t understand the conversation but wants it to continue he mimics, this huge smile and dead eyes. All these coping strategies have been pushed onto him by us when we haven’t known how to cope. Or have been self-taught. I admire him greatly and by learning to live like this he has made friends in the village. Generally much older, often of pension age. He has found a way to take part in social events and feel confident(ish). And however much of all this is a façade, he copes.

Or does he? As much as I admire him I cannot understand lots of the things that he does. When I ask him to explain, he can’t.

For example, was he coping a few months back when he stopped eating his packed lunches and hid them every day for 3 months in his school bag?

Was he coping this summer when he arranged to camp with a friend in the woods behind our house. When it got rained off he was too scared to bring his mate home because he has lied about where we lived?

Was he coping when he convinced himself he was achieving A’s and B’s at school despite everyone telling him he wasn’t?

Is he coping when his lack of comprehension regarding reality, and his blasé way of looking at everything holds him back from making meaningful friendships and relationships?

Is he coping when he tells me that he’s fine and gives me a huge smile with dead eyes?

The answer is I don’t know and I don’t think I ever will. Raising a child that you love so much, and know so well, but will never really understand is truly heart-breaking and very tiring. I would love to be able to share with him how he feels and see the world the way he does, even if only for a day.


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