Twinkle, Twinkle, Little Star

11 March 2010
A few days ago, we had a visit from our Friendly Autism Expert or FAE, as we’ll call her here. (It also conveniently stands for Favourite Autism Expert). Not only has FAE had years of experience working with families and schools about how to coax interaction out of autistic children, but she also the mother of an autistic child herself, which means she’s incredibly empathetic about what we’re going through as parents.

She’s come to see R two or three times already. I think the first time was a year ago, around when T finally broke down and agreed with me something seemed wrong with R, who was about 20 months old at the time, because he wouldn’t acknowledge T shouting his name at him in the bath. FAE was there when the health visitor came for her official visit to discuss our concerns so that she, the health visitor that is, could write a report to our GP asking he refer R to the local specialist unit, in order to get the whole diagnosis thing rolling. So knowledgeable is FAE about autism, she practically dictated to the health visitor (a lovely woman, but a little out of her depth with all this) what she should write about the signs.

On that first visit, FAE coached us and D through what we needed to do to start getting R to interact with us more. Basically, it comes down to being hyper-observant about how he’s reacting to us, and learning how to get his attention and then build on that to parlay the attention up into an interactive game, or conversely learning how to spot when to lay off a bit and give him his space. She told us how to use keywords to encourage him to use them back. For instance, when we trap him between our legs so he can’t escape, we should say, “Trap!” so he knows this game is called Trap, a bit of play he used to find hilarious. If we have him trapped in a leg vice and have got him giggling away, then we’re supposed to pause for a moment to give him a chance to say, “Trap!” himself, to effectively ask us to continue the game.

Since we can’t be inside R’s mind, we’ll never know if following FAE’s instructions made the difference or if he simply decided off his own back to start talking and interacting more, but I feel it’s been instrumental in coaxing him out of his shell over this last year. Maybe he simply liked getting more attention after having felt neglected in the wake of his sister’s birth when he was 14 months. In any event, the child FAE met a few days ago, according to her, was markedly more interactive than the one she’d met a year ago. He made eye contact with her several times, came up to her and through gesture asked her to take a lid off a pen so he could scribble on some paper like she was doing, and was generally talking and expressing himself much more, even accounting for the fact that he’s older than he was when she last saw him. He even treated her to a rendition of “Twinkle Twinkle Little Star,” a song he’s really making his own, like Frank Sinatra with “My Way.”

After going over some strategies about how to handle R’s less amusing habits – like attacking the touch-sensitive bin in the kitchen and chucking hard objects like pool-table balls as far as he can whenever he gets a chance – FAE, R and I all went to his pre-school so FAE could give his one-on-one teacher N a lesson in how to maximise her own interaction with him. Poor N, and incredibly sweet and gentle soul who’s only ever worked with neurotypicals, had been feeling lost and confused about what she was supposed to do with this weird kid who races manically around the schoolroom like he was tweaking on crystal meth.

The school had been very taken aback by his behaviour in the first few weeks he started attending, and insisted they couldn’t cope with him unless he had a one-on-one teacher. If he was to start going more than one session a week, we had to get funding from the council, which involved a liaison teacher coming in to observe him one day. (We offered to pay for the extra teacher ourselves in the interim, but for some reason they resisted this.)

Fortunately, R was particularly badly behaved the day the liaison teacher came. Her report, bizarrely enough all written in the present tense, sounded like a script for an as-yet-unmade film about an autistic child: “R goes to the art table and throws another child’s half-finished project in the air. The other child cries, but R is off to the sand table where he begins throwing sand in the air, laughing maniacally.” I’m sort of paraphrasing here, because she didn’t actually use words like “maniacally,” but that was the gist. The school was horrified by the report and worried T and I would be upset by its “negative” tone. We just shrugged and said if it gets the funding in, they can call him the next Jon Venables as far as we’re concerned.

As it happens, we got a letter a day before FAE came saying they would fund a one-on-one teacher for two sessions a week, and that will continue to be N. So on the day I’m writing about, FAE watched N and R for an hour, while I watched them, and then she gave N feedback about how to approach scenarios she’d just seen. Like, for example, if R is playing with dollhouse furniture, opening and shutting a toy wardrobe over and over, N should pick up another toy with doors on it and open and shut them too so he could see she’s interested in what he’s interested in. From there, they could escalate it into a turn-taking game. I chipped in that it was like you’re single and suddenly going out with a guy who’s only interested in football, and even though it bores you rigid, the best way to land him is to feign interest in football.

N was incredibly grateful for the guidance from a proper professional expert. I could see that FAE knows exactly how teachers think, and her years of experience in working not just with people with ASC (Autistic Syndrome Condition – we’re not supposed to call it Autistic Syndrome Disorder anymore) but with parents and educators has made her incredibly competent at dealing with both sets of folk.

That night, a friend of ours came to stay and we all watched “Rain Man,” the daddy of all autism movies. I hadn’t seen it in years, in fact I think I may never have seen the whole thing all the way through.

First of all, I was touched that the copy we watched was from D, who went out and bought it herself because she wanted to know why I kept jokingly referring to it. (When R is being particularly withdrawn and in his own world, I call him Rain Man.) In return, I gave her our copies of “Temple Grandin” and “Adam” and look forward to hearing what she makes of them.

As a film about someone with ASC, “Rain Man” is better than I expected it to be, although it naturally rather romanticizes the Dustin Hoffman character as a sort of noble autistic savage savant. We watched a documentary (surprisingly boring) a few days ago about a pair of autistic savant twins, and it made the point that savantism is incredibly rare – there are only about a hundred known cases of people with ASC who can add up huge numbers in their heads automatically or tell you what day of the week any given date was or will be. I read once about a parent who’s also a doctor and has an autistic child. He said that it annoyed him that the two questions he’s always asked about his kid are first, does he think the MMR vaccine caused the syndrome and, secondly, does his kid have any amazing savant skills. (The answer is no in both cases.)

But still, from what I can gather based on my limited experience of having R and reading a shit load of books about autism, Hoffman nails the mannerisms bang on – the monotone voice, the shuffling, tippy-toed gait, the furtive quality poor eye contact creates. It’s just too corny the way he suddenly loses his inhibitions about body contact in order to let Valerie Golina dance with and then kiss him in an elevator. Also, his character copes rather better than I would expect with his routine being disrupted when he’s taken out of the institution he’s been living in for 30 years or whatever it’s been. He insists on having lime-flavoured jello every Tuesday night, but if that were R he’d have thrown a fit if the jello the Tom Cruise character managed to provide didn’t taste the exactlyn the same as it always tastes. But what the hell, it’s a Hollywood movie and the character couldn’t be too weird or annoying lest it put the audience off.

Strictly as a movie, we were amazed at how slowly its action moved forward, and how baggy the script was compared to the wham-bam of current movies which can’t trust an audience to just sit patiently and watch two people interacting, unless it’s a mumblecore movie and that’s all they do, as if drama were some kind of aesthetic sin. It seemed somehow very telling that this won the Best Picture Oscar in 1988, while just a few days after we watched it last week the tension-fest that is “The Hurt Locker” won Best Picture.

The other thing that struck me was how exotic the term “autism” still was in 1988. There’s a scene in “Rain Man” where a nurse in a provincial health centre doesn’t know what it means at all. Now it’s like the trendy mental-health problem, as Bruno says. A few days before we saw “Rain Man,” We also watched an old episode of “Oprah” about parents of autistic kids, and Oprah kept saying that this was the first time she’d ever done an episode about a condition that affects, at a conservative estimate, one in a hundred and fifty children - more than childhood leukaemia. (Someone told me the other day that they think it now affects one in 40 boys, and one in a 150 girls in this country.) You can see why it’s being talked about as if it were an epidemic, although no one knows if the rise in cases is an effect of better diagnostics (in the old days, a kid like R would just have been considered eccentric or “retarded”) or a real rise in the incidence of autism. Curious.