Like all seven-year-olds, my eldest daughter Mia is full of surprises. One evening when she was four, I found her on the couch apparently whispering to the pages of an open book my mother had brought over. I got close enough to realise that she was reading it.
This was the girl so afraid of the alphabet only a year before that she would put her hands over her ears and run from the room when Sesame Street announced its letter of the day. How would she ever learn to read, my wife and I pondered. It turned out that Mia taught herself. It was a lesson in turn for us – not least for me to remind my mum not to leave her trashy airport novels lying around.
Our world was knocked sideways forever the day Mia, when two, was diagnosed with an autism spectrum disorder. We were in denial, probably out of pure shock. Because we knew no better, we thought an autistic child was one who never said a word, was in nappies until adolescence and was completely locked in their own world and unable to engage with the outside one. There are certainly people whose lives are like that, but that was not Mia.
The first lesson we learned – that anyone learns – about the autism spectrum is that it is just that – an incredibly wide array of development disorders in areas such as social interaction and communication. It is not a mental disability, although it is to do with neural pathways in the brain. It is not malaria, mumps or measles; there cannot be one treatment for all because all cases are unique. Even Brisbane-based Englishman Dr Tony Attwood, who has done pioneering work on Aspergers Syndrome (Mia’s type of autism) for more than a quarter of a century, says of all the cases he has encountered, not one person has displayed 100 per cent of criteria.
So when I saw a recent newspaper poll asking if children with autism should be schooled separately, it struck me as odd. It’s like asking if food should be cooked, or whether coats should be worn. It depends, surely, on the food, the weather, the individual. Simply, some kids can cope with the tumble and rumble of mainstream school and some cannot. My suspicion that autism is still viewed broadly as a condition which necessarily means people should be shut off from society was confirmed when the poll result showed four to one that yes, separate schooling was the only prospect for these kids, for whatever reason.
We always knew it was worth aiming Mia at mainstream school. She had what they call social intent – the world and its ways confused and scared her (and still do) in many ways - but with early intervention in areas such as psychology and speech and occupational therapies, she has made enormous strides in dealing with people and coping with stresses and frustrations. Mainstream school is not a perfect fit, but she has a very supportive teacher who recognises her triggers and can usually nip pending meltdowns in the bud. Problem areas remain, and the tweenie/teenie minefields but a few years away appear daunting, but the more educated children and teachers are about autism, the more Mia and kids like her will feel accepted and able to fulfil potential.
Funding support for Mia is non-existent due to her not having an intellectual disability. If Mia had a teacher’s aide (now known as a Student Learning Support Officer) for a couple of hours every day, she would thrive. One-on-one teaching for children with autism is paramount to their learning. Alas, swingeing cuts to education budgets by the Newman and O’Farrell state governments to name but two make such measures all the harder to attain.
Having Mia in a mainstream school is not just a one-way street. Just as she is exposed to her neuro-typical peers and their (to her) curious nuances and rules, they are mixing it with someone whose behaviour is occasionally non-conventional. That broadens them. They will recognise that Mia’s buttons work differently, and when it is explained why, it is not scary. Their acceptance of diversity grows, and they become more inclusive. Concerns that autistic children are disruptive and violent are vastly overplayed; in an understanding environment that does not confront them, these kids usually present as quiet, shy, honest and diligent.
In the meantime, Mia, who is no Rainman but certainly brighter than average, continues to top her year academically. Perversely, the same condition which could be said to make her clever has also bestowed an almost-crippling fear of acclaim; the very prospect of being publicly lauded and applauded for achievement renders her overly emotional, exhausted and nearly ill with worry. School assemblies make her nervous – her class might win the weekly award for being the quietest, and equally unsettling is the prospect that they might not. Something as inevitable in life as competition will always cause more fear in her than it is worth.
We have recently started discussing Aspergers Syndrome with Mia and all the ups and downs it might bring to her life. She knows it causes the nasty frustrations that upset her but also that it made her hyperlexic (opposite of dyslexic). She loves spoonerisms and wordplay and told me the other day, giggling, that being a girl must make her an Aspergette. She’s cluey, but the one thing Mia Rose Kelly will never know is how precious she is.
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