T and I have been a bit slack about watching films about autism lately, but I've been cranking through books on the subject. I go on Amazon to buy a particular title and due to their fiendishly effective recommendations widget, after I buy one I end up buying half a dozen more. I now have several shelves of autism-related stuff, most of which I don't have time to actually read, between work, helping D with the kids, and other commitments. But it's somehow reassuring to own them.
They fall into roughly three categories: self-help advice books, non-fiction memoirs, and fictional books about autistic characters. Of the advice books, I've lately bought two different ones about toilet-training and two on working with food issues. One of the books on toileting is called, I shit you not, "The Potty Journey." What is it with autism and the word "journey?" I'm growing to hate this insipid, self-important word, which also happens to remind me of one of my least favourite 80s Californian power-pop bands, so regrettably revived of late by "Glee."
Like so many advice books for parents of autistic kids, "The Potty Journey" looks like it was designed on a home-publishing programme with too many breakout boxes, scary-looking charts, heavy-line faux-naif illustrations, and cutesy, quasi-comic fonts. The reader is constantly advised to keep a journal of all the autistic child's wees and poos and the times of the day they occur. (We also have to keep a journal of R's more autistic behaviour in general for his statementing application. He will be the most documented child in East Anglia soon.) How can I ever have a dog and keep up all this recordkeeping too?
I've sort of skimmed over the ones about food issues, but basically the advice boils down to: 1) be patient, 2) keep making new stuff, no matter how discouraging it is when they reject it, and 3) don't get too worked up about it, they won't starve. Which is true, R isn't starving and even though it's a pretty limited diet it is a fairly balanced one. Having said that, we're very worried that all our local supermarkets have stopped stocking Plums' Spinach, Parsnip and Basil puree, which is nearly the only vegetable dish he'll eat. T is having his PA investigate buying a thousand pots of it to keep in storage in case they discontinue the line.
Two of the memoirs I've read recently were excellent, and I recommend them to anyone who might be reading this blog with a kid with autism. The first, "Joe: The Only Boy in the World" by Michael Blastland, is by the parent of a little boy, the titular Joe, who's clearly a much more severe case than R. Joe barely speaks, will only eat Sainsbury's Spinach and Ricotta Tortellini, and is so obsessed with children's videos he breaks out of his house and goes storming into neighbours' homes if he's had even a glimpse of a video he wants to see. Author Blastland, Joe's father, explains how Joe even got himself hit by a car while on one such quest, which led them to homing him in a residential special school because they just couldn't cope with him anymore.
But the pain and suffering are less the issue in the book than Blastland's very considered, coolly reflective contemplation of how Joe's difference forces us to consider what being human is, from a philosophical, psychological, and even evolutionary point of view. Here's a sample:
"The events in his life are sometimes mortifying, sometimes comical, poignant or weird, but above all for me now, they are fascinating. Fascination is one of the great consolations of this life of his, otherwise so frustrating, and I prefer that kind of consolation to pity; but thinking about Joe's uniqueness pays doubly, with a deeper understanding of all our humanity than I could ever achieve by dwelling on my own.
What makes him fascinating? In part, seeing what we have in comparison to what he lacks. He makes much that we take for granted appear suddenly luminous, and we see equally starkly where we would be without it. As one eminent researcher put it, Joe's condition teaches us 'nothing less than the people-ness of people.'
As the sample above suggests, Blastland also writes beautifully, and I felt continually humbled by his graceful, darting prose while reading the book. Now a producer for a Radio 4 programme, Blastland obviously studied philosophy or psychology at university and the training shows. In the end, it's much less a misery memoir than a sui generis essay on the nature of consciousness, told through the prism of one parent's love for his strange, enigmatic child.
I also recently loved and read "Send in the Idiots: Stories from the Other Side of Autism," by Kamran Nazeer, who was himself diagnosed as autistic at a young age, didn't speak until he was three years old, but now is a policy advisor and civil servant living in the UK. I'd quote a chunk but I lent my copy to N, R's one-on-one teacher, to read over the summer. Suffice it to say, it's also brilliantly written, and also very funny in places.
The deal is, Nazeer went to a special nursery in New York City when he was very young with other children with autism. Now grown and with a strong desire to find out what happened to his former classmates, he looks them up four of them. One has become a successful computer programmer who often talks through puppets and has a violent temper. Another is a bike messenger in Manhattan, who has a complex relationship with his male lover who over-fetishizes his autistic lover's gifts, throwing up all sorts of fascinating material about how neurotypicals sometimes romanticize the autistic. Another schoolmate has become a speechwriter, and he and Nazeer become good friends although he illustrates how difficult friendship is even for high-functioning people with ASC. Finally, one former classmate, a girl, has committed suicide and Nazeer visits her parents in a quest to understand what went wrong for her.
I can't recommend Blastland and Nazeer's books more highly – both great reads, both intellectually stimulating as well as emotionally compelling. The fiction I've read recently is much less impressive. I've two recently, both perhaps not by coincidence murder mysteries, both by Americans, and both about single-parent families. One was called "Eye Contact," by Cammie McGovern who according to her author's note has an autistic child herself. In it, single-mother Cara (you never learn how she supports herself, which bugged the shit out of me) has a son named Adam who apparently witnessed the murder of one of his schoolmates, so she and the cops struggle to get clues out of him although he's barely verbal.
The other book I read was "House Rules" by Jodi Picoult, because someone offered me 50 quid to review it, knowing I had an autistic kid. In this one, the autistic person is a teenager who -- because of his inability to make eye contact and a bunch of circumstantial evidence -- becomes the main suspect when his tutor is murdered. Picoult, who writes these big airport novels you always see fat women reading on the beach in the summertime, clearly did her research, but fucking hell it was a grind to read. I guessed the twist by page 200 (it's like 500 pages long) and then slogged through to the end in the interests of journalistic ethics.
I found in both books the need to paint mothers of autistic kids as ferocious, brave lionesses rather annoying, smacking of flattery, self-flattery in McGovern's case and of subjects interviewed in Picoult's. I was also deeply annoyed to find both books trotting out that old, deeply discredited theory that MMR vaccinations may have triggered autism. It's just simply irresponsible to keep printing this rubbish. Also in both books, the autistic kids are on gluten-free, casein-free diets which the Americans seem to be obsessed with as the cure-all for autism, although there's very little evidence they work at all. But I suppose it's a good thing popular fiction is making the condition better known and understood for a mainstream audience. I just wish people read more books like Blastland and Nazeer's.
