Out of control

11 April 2012

To discover that your child is 'not quite right' is the worst nightmare of every parent.

For Charlotte Moore, this nightmare occurred twice, with her two normal-seeming sons slowly developing curious behaviour patterns which led her to seek professional advice, and eventually to be told that they were autistic.

'People often ask whether receiving the diagnosis was a terrible shock,' writes Moore, in this extraordinarily positive and insightful book. 'I don't think "shock" is the right word. There was an element of relief...once you know what you're up against you can start planning the best ways of dealing with it.'

So what causes this mysterious condition in which the wires in a child's brain seem crossed, and normal responses and behaviour are distorted? The fact is, no one knows, and Moore wisely avoids discussing the controversial link some make between the MMR jab and autism.

Her boys appeared normal. George was a bright, precocious, overactive baby, walking at nine months, speaking several words by his first birthday and able to sing some carols word-perfect by his second.

Sam was a more placid, undemanding baby, developing well, and by 20 months joining in nursery rhymes, enjoying his food and jabbering away in rather unclear speech.

Yet by the age of four, both boys' increasingly bizarre behaviour could no longer be ignored. As Moore explains: 'A common belief is that there is a normal child trapped inside, struggling to get out. This is a false belief.'

She describes the tribulations of everyday life with George and Sam, now 14 and 12, and, frankly, your heart goes out to her. Not that she would want anyone's patronising sympathy.

Each day the boys leave a trail of destruction in their wake: snapping off flower heads, spilling drinks, tearing books, breaking toys, tipping up vases, rooting through handbags and smearing excrement.

Sometimes they refuse to eat or, in George's case, only eat food smothered in ketchup. Sam went for weeks eating only the top part of Jaffa Cakes.

They wake throughout the night, racing about, whirring, humming, hooting and jumping into their mother's bed. She is lucky to get four hours' uninterrupted sleep. They have fits of tearless crying - making a 'banshee wail' for protracted periods. They simply cannot understand the concept of the word 'no'. George tears sweet wrappers into tiny pieces; Sam rubs balloons together, making irritating squeaky sounds.

Both boys, it should be noted, are in appearance as beautiful as angels and this loveliness, as Moore explains, is characteristic of autistic children.

With hindsight, and after comparing the boys' development with that of her normal son, Jake, aged four, Moore can detect early warning signs.

One significant indicator of autism is the toddler's inability to use pretend play - for example, pushing cars along and making 'brm brm' noises, or holding cups to the mouths of teddy bears.

Another is lack of interaction - failing to raise arms to be picked up, not offering toys to adults, not greeting mum or dad with feverish enthusiasm.

A third is the failure to imitate adult activities - toddlers love to stir the contents of saucepans, sweep floors, apply lipstick, clatter about in mum's high heels.

As Moore explains it, the autistic child can be highly intelligent or mentally retarded, but cannot use his imagination to understand that other people experience things separately from himself.

He cannot communicate properly because he doesn't know what needs to be communicated. Speech sometimes never progresses beyond the baby-like repeating of adults' words. The sudden regression that occurs in autistic children at two or three years is a sign that their brains are struggling and failing to cope.

On the vexed question of why there has been a ten-fold increase in the numbers diagnosed in the past 20 years, Moore is as stymied as everyone else.

She does make the point, which must have already occurred to most people, that autistic children didn't seem to exist before the Sixties. If, as experts insist, the condition is not new, where were all those children?

As Moore writes: 'In all my childhood I never came across a child whom I can identify retrospectively as undiagnosed autistic.

'When I visited friends' houses, there was never a little brother twirling and flapping in the corner. On buses, in shops, in parks, I don't remember normal-looking children shrieking or hooting.'

Perhaps such children were locked up in mental hospitals or children's homes, or floundering undetected or misdiagnosed as suffering from 'infantile schizophrenia'.

Every parent reading Moore's book will empathise with her comment that 'the powerlessness that results from finding your child in the grip of some torment you don't understand is horrible'.

Horrible, indeed. Moore offers sensible advice, clear-eyed observation, but absolutely no miracle cures. After trying many helpful and not-so-helpful treatments, the only therapy left on her wish list is swimming with dolphins because it sounds like fun.

She accepts her difficult children for what they are, with love and joy rather than love and regret. She is wonderfully upbeat, funny and completely without self-pity, and her work will be an inspiration to all those people - parents and professionals - who are brought face-toface with the tragic and puzzling phenomenon of autism.

George and Sam by Charlotte Moore (Viking, £16.99)

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