Sometimes I get a glimpse, a glimpse of what ‘normal’ would look like, even feel like. It’s like living someone else’s life just for a second, it’s a moment of clarity amidst the confusion. Now when I say a glimpse, I mean literally a snapshot. It might be a smile, a hug, a short conversation. All the things that many parents take for granted, for me are rare and cherished moments. Two of my children have autism.
I find these times particularly rare with my daughter, Tabitha. She is so strong-willed and determined, she never shows a vulnerable side, a side that says ‘I need you, mum’. She never wants cuddles or to be held, she never needs my help. All she wants, or should I say ‘demands’ from me is ‘stuff’ – a computer game, a rabbit, leggings, a guinea pig, a new top, a dog. If she doesn’t get what she wants there’s trouble. Now that might sound like the behaviour of a spoilt child, but this is about control. Control of an environment that is so alien to her that by having just that little bit of control everything becomes just that bit safer and that bit more manageable. She lives in a heightened state of anxiety, at any moment could be pushed over the edge and into a melt down. By feeding her obsessions she maintains control of all that is around her, creating her own world – Tabby’s world.
What if she doesn’t get her way? Tackling Tabitha can be like taking on a tiger. She can scratch and bite either me or herself. She will refuse to engage in anything that threatens her world – like talking to adults, going somewhere unfamiliar or doing something different. Do we give in? – maybe sometimes! We use various ways of promoting desirable behaviour, the obligatory reward charts and systems – some successful; some not. It is an ongoing battle in socialisation – an attempt to mould her into a socially acceptable adult.
Despite her challenging behaviour she never ceases to amaze me. She is a master of disguise. She can camouflage her difficulties at school so well, that if I mention her ‘crazy’ side, the teachers look at me in disbelief. How does she do it? I have been observing my daughter since the day she was born; there isn’t much that escapes me. She searches the internet for how to apply make-up, pluck eyebrows and even shave her legs. She uses ‘friends’ as her eyes and ears so she always knows what she is supposed to be doing and when. She flies below the radar. I said to her once as she left for school ‘What time do you finish school today?’, ‘I don’t know’ she replied, so I asked ‘Well how do you know when it’s time to go home?’ She looked at me as if I was mad and said ‘I just leave when everyone else leaves.’
A bad day at school equals a tantrum at home. I think that AS girls are experts at putting on a facade to the outside world, an exterior that says ‘I’m coping’. The flip side of this is that the parents can experience extreme behaviour, behaviour that has been bubbling under the surface all day. As they approach the front door the facade begins to crack and the Autism begins to seep out ready to explode at whoever opens the door.
It is due to these things that these glimpses are so important, they keep me sane, they show me how different life would be without the Autism, and just seeing that helps me find the child behind the disorder. Would I change her? Would I take away her Autism if I could? Definitely not! After 16 years of living life on the edge, I would not change a thing. My children have taught me tolerance, compassion and acceptance. Maslow once wrote “… what we call “normal” in psychology is really a psychopathology of the average, so undramatic and so widespread that we don’t even notice it ordinarily.” I prefer a challenge!
Maslow A., (1968) Toward a Psychology of Being. John Wiley & Sons, Inc. New York.