Books
Our children
by Philip Matthews
Two new books about autism show how far we’ve come – and how far we’ve got to go.
A perfect world? Late in Mark Haddon’s justly acclaimed novel The Curious Incident of the Dog in the Night-Time, 15-year-old Christopher has his favourite dream. It’s a science fiction dream in which some kind of virus wipes out most of the human race:
Eventually there is no one left except people who don’t look at other people’s faces and … these people are all special people like me. And they like being on their own and I hardly ever see them because they are like Okapi in the jungle in the Congo which are a kind of antelope and very shy and rare.
Christopher has Asperger Syndrome, a form of high-functioning autism. It’s an easy mistake to think that people with autism reject all human company and don’t long for, and sometimes clumsily seek out, friendships and connections, but you can understand why someone like him – so stressed by that which comes easy to the rest of us, so confused by the guile and politics and dishonesty of “neurotypicals” (the non-autistic) – might occasionally fantasise about a world that is organised for their benefit, not ours.
A Perfect World is also the title of Wellington journalist David Cohen’s autism memoir. There are two types of autism memoirs: books by parents seeking answers or help (there are no cures, but there are ways to improve quality of life) and books by the autistic themselves, writing in late teens or adulthood.
Haddon’s book is a persuasive imitation of the latter, while Cohen’s is the former. When his son Eliot is diagnosed with autism, Cohen sets off on an intellectual journey of discovery that is also a vividly described geographical one, taking in the US, South Korea, England and Israel. It isn’t just a father’s perspective, either, but – and this is why it’s a superior book of its type – a journalistic one, artfully shaped and imaginative. His description of the disorder is as good as any I’ve seen:
Autism represents a self-generated and self-contained world, a secret well of unfiltered imagination in which nobody stuck on the inside ever gets to fully leave and nobody on the outside really gets to climb in. Autists lack empathy. They lack the ability to move outside of themselves and inside another person’s skin. In the profoundest sense they lack rhythm, the “metronome sense” by which most people are able to keep a beat indelibly in their mind while sifting through a welter of different meters resounding in the background. How does the lack present itself? To take a factoid … filched from the internet: all children, irrespective of culture or language, have been shown to instinctively understand the meaning of the familiar childhood taunt, “Nyu nyu-nyu”. Ah, but not these children. Not our children.
Or – and maybe this is worse – what if your child understands the taunt, but can’t control her reaction? What if she laughs along with the joke, when she should withdraw or find something clever to say back? Kids with autism can be naive and socially awkward, and so get bullied at school, are left depressed, victimised, even suicidal.
When your kid gets diagnosed, your world changes and it will never change back (Cohen quotes affected parent Nick Hornby’s heartbreaking line about the “30 terrifying years”, surely familiar to all parents of disabled kids – “the offspring’s average time on earth after their parents die”). You’re always thinking about autism, partly because no one else will think about it for you.
So one of the many good things about Cohen’s book is that it makes us angry about how New Zealand is failing these children – “The government here will not endorse or fund intervention treatment nor allow tax breaks to parents who must use a large portion of their own earnings to pay for their disabled child’s neurological life raft.”
It’s typical for New Zealand families to spend up to $50,000 per year of their own money on behavioural intervention. Houses are sold or remortgaged, families break up (among the many gloomy statistics to overwhelm parents new to autism is this classic: 80 percent of marriages end due to the stress of raising an autistic kid).
Parents – especially mothers – with internet connections become overnight experts, sometimes forming their own supportive and information-sharing networks. They will have encountered some of Cohen’s cast before – the Cambridge autism researcher Simon Baron Cohen, the autistic savant and animal consciousness expert Temple Grandin – but some of this will be fascinatingly new, especially a chapter about a dedicated educational facility for the autistic in Israel, which sounds like … a perfect world.
Is this what Cohen means? In this sensitive and eccentric, tender and intelligent, sad and ultimately hopeful book, the phrase keeps reappearing with fresh nuances. One of the appealing uses, even to the non-religious like Cohen, is the Christian idea that at Judgment, we all appear without artifice, without masks. “What will be revealed will be the selves which were truly at our core and which we nurtured and fed and kept alive in the innermost rooms of our life.” The autistic self.
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