I hate it when Kaylia gets upset. During yesterday's therapy she was working well but protesting .... this protest is a sort of wail. Both Naomi and I can hear this while we're working a couple of rooms away and our stress levels escalate.
Naomi has her final session of the horrible course this afternoon...
The extract below is by Charlotte Moore ... a mother of three boys .... Two are adults with autism. The experiences and lessons she relates are very sobering.
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Autism is as yet undetectable before and immediately after birth. The average age of diagnosis is about five. Therefore nearly all parents of autistic children have a period of expecting that their child will develop neurotypically (non-autistically). It's hard to shake off the assumptions of those early months or years, and take in the fact that your child will do everything differently.
George and Sam, now 22 and 20, were both diagnosed at four. I accepted their autism, but I underestimated the extent to which it would shape my life and theirs. Looking at elfin, golden-haired, precocious George, at sturdy, adventurous, mischievous Sam, I couldn't see them as two people with a profound life-long impairment. But such is the case. George, the more socially able of the two, is vulnerable, eccentric and naive; the Rudolf Steiner college he attends provides the protection and support he will always need. Sam, aloof and sometimes aggressive, lives at home, with a time-table geared wholly to his needs, and a one-to-one personal assistant.
I'm satisfied that all three of my sons (Jake, who isn't autistic, is 14) lead reasonably fulfilling lives, though there's always room for improvement. All parents learn on the job; giving birth to a child with autism doesn't make you an instant expert. But with hindsight, there are changes I'd make.
To start with the basics – food. It's taken 20 years to get George and Sam eating anything like a normal diet. Most autists get stuck on a tiny range of trusted foods – I wish I'd kept all junk at bay, so that the boys would have had to obsess over, say, chicken, brown rice and carrots rather than chocolate and HP sauce (George) or crisps and icing (Sam). I used "treat" food to help them to cope with stressful situations, such as travelling or going to a party. Once they knew such treats existed, they held out for them. Now, I would avoid such situations. Modern children are supposed to enjoy the excitement and stimulation of birthdays, Christmas, holidays, expeditions, but autists do best in a calm, predictable environment. It's difficult to accept that your child would be better off never going to a birthday party, but it might be true.
Autists can go for days without eating. This is alarming. For years, I was so glad if they ate anything at all that I didn't mind how or where they ate it. Sam would squat naked on our kitchen cupboard, raining down Rice Krispies on passers-by. George sat on the Aga, only eating if no one was looking. I now think instilling the social behaviour associated with eating is more important than counting the calories consumed. Easier said than done. The autistic will is one of the most powerful forces known to man. But a relentless insistence on sitting at table with other people would have been a battle worth waging.
Sleep, lack of – on this one, I'd take the opposite tack. You cannot force somebody to go to, or stay, asleep. I tried everything, but George didn't sleep through the night until he was 13. I'm afraid my advice to parents in my position is to lower your expectations to zero and throw away those tiresome books that tell you what you're doing wrong. Accept the broken nights, develop the art of power-napping, and take the long view. Both boys now sleep through – usually.
Autism in the family means finding a compromise between autistic and neurotypical needs and behaviours. Respect your child's autism and pick your battles. Smearing faeces has to be stopped, but does scribbling on the wall really matter? An eight-year-old with a dummy may startle passers-by; but how much do you care? You'll need to develop a rhinoceros hide, in any case. That and a sense of humour.
Prevention is more realistic than cure. Jake's room is locked from the outside when he's out, to prevent Sam from trashing it. Sometimes Sam locks Jake in – but Jake, I'm proud to say, is very tolerant of his brother's habits. He calmly rings me for release.
Autists have particular skills and interests, but it's a mistake to try to approximate these to mainstream activities. Your child sings beautifully, but that doesn't mean he can cope with the social complexities of a choir. He's a fast runner – but if he has no competitive spirit, is there any point in trying to make him race against others? You may feel a pang when the children of friends achieve dazzling exam results or star in the school play, but count your blessings – you're well out of the ghastly pushy system that over-values such things.
Don't compare. Whatever your autistic child is like, he or she is a complete person, an extraordinary being who experiences the world quite differently from you or anyone else. Inclusion in mainstream education may suit some autists (not mine), but each case must be decided on its own merits. Don't push your child into the mainstream in the belief that normality will rub off. That won't happen. Whacking square pegs into round holes can do untold damage. Since the ages of six and eight, George and Sam were educated in special needs schools, and we've been well served by the state in this respect, but seeing how well Sam is responding to his personalised, post-school time-table, I wonder if he'd have done better if he'd never been to school at all.
When the boys were younger, I tried various interventions and therapies, and these I don't regret. Most of them bought some kind of benefit, if only slight, and if I hadn't tried, I'd have been left with a sense of "What if ...?" Some symptoms of autism are distressing, and I feel justified in looking for ways of alleviating them. I hope I was never looking for a cure. Parents sometimes mourn the child they feel they've "lost" to autism, but this, I firmly believe, is an illusion. My sons were born autistic, and autistic they will always remain; my acceptance of that is wholehearted. If I had my time again, I'd do some things differently, but I wouldn't be without them for the world.
