Her bed is too high – a midi sleeper – and I can barely reach over to her as she lies on the other side. She faces the wall and I can see the bodily signs of tears. Big, heaving body shrugs of misery. ‘I really hate having autism, she sobs. ‘It stops me doing what I want to do. It makes everything wrong.’
I know what she means. Right from the start, from the beginning of this fictionalised life, based on the reality of our daily lives, it’s felt as if something, for her, is ‘wrong’. She’s not ill, she’s not unhappy, she’s not unpopular either – but she’s ‘out there’. She’s the child who, frequently pallid and withdrawn, has suffered with various childhood problems just that little bit more intensely than her counterparts and managed to cope just that little bit worse.
It has always been said that her cleverness is her salvation. She is bright, and well known for being ‘geeky’, but recently her school work has fallen off, her hair has become greasy and string-like, and her skin has erupted on temples and chin. ‘Poor kid,’ I find myself thinking. ‘Poor kid. She’s got enough to contend with – why make her go through puberty as well?’
And yes, I know that despite her frequent difficulties and ups and downs, she’s still better off in body and mind than a great many, but that is almost part of the problem. It’s as if her invisible disability is worse for her than expected because people hear her speak, listen to her articulations of deep and intense ideas and see her looking older and wiser than his years. And as a result they expect something more of her. They expect greatness and achievement well in advance of her years. They certainly don’t expect the duvet-hiding, the tears of emotional pain, and the rest.
I worry for her. I’m her mother – that’s my job. But that doesn’t make it less troubled worry. My little girl needs what I’m not sure I can give – the confidence and skills to take herself outside of the autism diagnosis and the restrictions inherent only within her own neural make-up. She needs to learn skills – I can help her with that. She needs to learn from her mistakes, and grow through experience. Only time can give her that.