Love You More

As I mentioned before, we're supposed to keep a log of the autistic things R does each day, to present as evidence when we apply for his statement of special needs. I made up special sheets and found a clipboard to attach them to, but it sits in the kitchen, mostly unused every day, collecting coffee mug stains. We find it hard now to recognize what an autistic behavior is because as far as we can see, all of it is autistic, like a pattern in a stick of rock. What should we write? "R spun the wheels of an object for 15 minutes today…. R didn't eat anything that wasn't made from pigs, bread, or sugar today… R failed to make conversation today beyond saying, 'May I have some ham, please?'" (It has to be said that G, his speech therapist, is pleased as punch he's picked up the "May I?...?" construction, making him the first child she's ever worked with who got that this early in his development.)

I know it's very important we keep this log, but I keep putting it off, like I do with filing my tax returns or working out expenses. Also, knowing that we need to accentuate the negative behaviours – the biting, the tantrums, the refusal to recognize the common laws of social etiquette - all the time depresses me. Instead, I want to note down the positive things he does, like helping to bring in the groceries, or showing imagination by pretending his toys are alive and want drinks or nibbles of his toast. He's taken up a particularly cute habit lately of holding one of his many Thomas the Tank Engines toys up to his face and grinning at it, then laughing and declaring that "Thomas is funny," as if Thomas has just made a face at him or told a particularly ribald joke.

I don't think he's going to lack a sense of humour. He finds slapstick on TV hilarious already, but is also amused by silly games. At bedtime, we have a fun little routine that works with rather than against his echolalia (tendency to mimic heard phrases) to amusing effect. I say, "love you," to him, and he repeats back, "love you," in a cheerful little voice. Then I say, "I love you more," and he repeats it back with the exact same intonation. Then I say, "No, I love YOU more," he repeats that back until one of us gives up. I think he knows what love means. If he doesn't, sheer repetition ought to familiarize him with the concept.

Further Reading

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.

Pets

Like a lot of amateur bloggers, I sort of lost momentum, and real life, in the shape of a big bunch of work and travelling, intervened. Now the itch is back. I’m staying home until August, and it’s been good to hang out with the family for a change instead of a lot of twitchy, harassed journalists. T and I had a lovely time travelling abroad together in June – I went for work, and he took an opportunity to sunbathe fairly guilt-free for a week.

The kids coped pretty well at home with D while we were gone. We Skyped them a bit, and R got a bit upset sometimes when we had to sign off (“no no no no no no…” he says heartbreakingly every time I say I have to go now), but little E seems to take it in her stride. The other day is a case in point. D and the kids drove me to the local train station so I could come up to London for 24 hours. I leaned through the car doors to give each a kiss goodbye and R, spotting the overnight bag, immediately twigged I was off for some time. “No no no no no no…” he pleaded, interspersed with little shouts of frustration, nearly making me cry. E, on the other hand, bossily instructed me to close the door and waved cheerfully. “Bye bye, mummy!” she said happily. Later, D asked her if she knew where her parents were. “In London,” she said. “What’s daddy doing there?” asked D. “Working,” said E. “What’s mummy doing?” “Shopping.” Little tyke’s got my number.

R turned three at the end of June, but we didn’t have a birthday party because we had a big naming day party planned for the middle of July. So for his birthday, I made a chocolate cake (roughly equal proportions of cake and frosting, just the way he likes it). He’s totally sussed the blowing out the candle trick. He’s also worked out how to tear wrapping paper off presents, and looks avariciously at every new, brightly wrapped parcel. T’s parents got him an electronic drum kit, which E, a little Karen Carpenter in the making (hopefully without the eating disorder) commandeered straight away. Naturally, he liked the remote-control car I got him the most.

R is going through a mildly aggressive phase at the moment, with me mostly. He’s really cut down on hitting or kicking his sister, and hardly ever thrashes at adults, but he bites me a lot, either when he’s excited and wants to play, or when he’s cross at me manhandling him into his chair for meal times, or trying to put his nappie on, or for just making him do anything he doesn’t want to do. I try to put him in the naughty box or make him have a timeout every time he bites me, as advised by FAE, but sometimes there just isn’t time.

Also, I’m starting to wonder if he’s getting too big for manhandling. If he doesn’t want to do something – like eat – perhaps we should just let him decide. In fact, we’ve had some successes in letting him set his own agenda a bit. During one breakfast he refused to eat and kept insisting on being allowed to get down from the table. Finally we gave in, and 10 minutes later he decided that, as breakfast was waffles that day which he loves, he did want breakfast after all.

He’s also getting better with animals. We went to some posh people’s house so T could play in a cricket match, and there were two spiky little terriers there. R immediately waded in and started giggling maniacally while trying to kick them. I think he thinks they’re big cuddly toys and he likes to see them move, so he kicks them, not getting that that hurts them because of his problems with empathy and theory of mind. Finally one had enough and jumped at him, barking madly, just when my back was turned for a second, no doubt after some kind of provocation from R. I think it may have nipped him, but we couldn’t see any bite afterwards. R screamed hysterically. T and I tried our best to console him (which took a while) but we were both secretly hoping he’d learned a lesson to be a bit more careful and wary of dogs, especially ones he doesn’t know. Strangely enough, ever since then he’s been more cautious around them, but thankfully still takes just as much delight in watching their antics.

We had to put our beloved cat Kylie down about a week ago. I ushered the children in to say goodbye to her before we took her for her last ride to the vets. Even then, R tried to bash her to make her move, which broke my heart in all sorts of ways. E, by way of contrast, was very nice to her and said, “Bye bye Kylie!” in a very sweet, solemn voice. I’m not sure if we’ll get another pet for a while. I think it’s best to let R grow up a little more first. Everyone seems to think we should get a dog and that that would be the best choice for R. The thought of walking the thing every day fills me with dread, because I’m fundamentally lazy and sedentary. Wouldn’t a gerbil do? Is there a pet you can get that’s doesn’t need walkies but is very robust and forgiving? Maybe a robot gerbil. Now there’s a business opportunity…

At last

I reckon R wasn’t even a year old yet when I first noticed something was… not exactly wrong, but different. He didn’t seem to be responding to his name the way he should do. His powers of concentration on favourite toys and pretty sparkly things were preternaturally strong. The far-away look in his wide-set, marine blue eyes, which only rarely look at you, put me in mind of fairy child changelings, creatures from other worlds with half a mind to go back there as soon as they can book the next flight.

When R was about 11-months-old, a friend of a friend came over with her little boy A. The two kids were only three weeks apart in age, but little A was already talking, feeding himself, and on the verge of walking, and R wasn’t even close. They develop at different rates, the other mother reassured me. She’s not just a schoolteacher and therefore understands kids but she’s also a better mother, I thought to myself. Maybe R is a bit thick I thought. Maybe he has Asperger’s or autism, I said aloud. Nonsense, said A’s perfect schoolteacher mother. I’ve seen autistic kids and he’s nothing like one of them. I put the thought to bed for another few months.

T would have no truck with the concept anyway. They just develop at different rates, he said, echoing our GP, the health visitor, his parents, my parents, and everyone else who met or knew of R. And look at how good he is at using a walker, T pointed out. Little A was terrified of the thing, and R can do three-point turns in it already!

So here we are, nearly two years later, and we finally have an official piece of paper with NHS letterhead and everything that says yes, R has an Autistic Spectrum Disorder. I have an overwhelming urge to shout “I told you!” at someone, but the words taste like ash in my mouth.

I feel strangely desolate about getting the diagnosis. We knew it was coming. We urged them to get on with it. I thought I, perhaps more than T or anyone else, was psychologically prepared for it. When Dr L finally said it, after Dr M had finished going through the ADOS assessment’s findings, I felt nothing but relief at first. And then minutes later I was crying and asking them if they could reassure me again (because I already knew the answer) that it wasn’t because I’d not taken good enough care of myself when he was in the womb. I admit it – I smoked some cigarettes, I drank some wine, I went to film festivals and got myself incredibly stressed. No, she reassured me. It’s not my fault. But if still feels like it is.

T, on the other hand, seemed to take it all in his stride. I think he went through the grieving more thoroughly last year, when the realization that R probably had some kind of autism drove T to give up drink for good so he could deal with it better. The other night T said he’s glad now that the next time someone says, Are you sure? He’s still very young, i.e. please don’t tell me there’s something wrong with your child because I don’t know how to handle the pity for you and I don’t want to know it, he can say, yes, we are sure now.

The Octopus and the Box

22 April 2010
Haven’t updated this for ages (not that there’s all that many of you reading who don’t know why), but just in case there’s anyone out there who doesn’t actually know me, the reason is because I’ve been in the United States for an extended trip, which was further extended by one day due to the unpronounceable Icelandic volcano erupting. So I’ve had 11 days away from T and the children, which has been sad and a little lonely but also refreshing in a way. I’d thought when I left that I’d do lots of writing while I was out there, especially when it became clear there was no chance T would be able to join me in New York. But as it happened I managed to fill the days with meeting people, seeing movies and wandering around. In the downtime in Oregon I watched old episodes of Glee I’d downloaded. It was all strangely blissful.

According to my sources back home in England, the kids are alright. In fact, I could see for myself during the video calls I made through Skype while I was there. Whenever I got through to them, E appeared rather unimpressed with the whole event and more interested in playing with the blocks I’d left in my office where the Skype connection is set up. R, however, was delighted to see mummy and all through the call would keep clapping and waving and blowing me kisses to me. T reckons he missed me more but didn’t show it as much, whereas E was more obviously clingy and needy.

The big news is that in my absence the Naughty Box finally arrived. This is a cage-like structure that we had a builder colleague construct so that when R does something unacceptable, like hit E or bite anyone, we can put him inside to show him there’s a consequence to that sort of behaviour. I was initially upset by the idea of doing it because it was too uncomfortably like putting one’s child in a cage. However, FAE gave it her blessing, and T argued quite rationally that there was no real difference between the box and putting R in the room where the freezers are but which he sees as no real punishment because he just spends his time in there pushing at the catflap, getting things out of the fridge and pulling books off the shelves.

So the Box arrived last week. D explained to me that it was no time at all until R did something naughty requiring use of it. She plonked him inside and walked away, no doubt to return taking care of E. She left him five minutes or so and then went back to check on him, expecting R to be teary and cross with frustration.

Not at all. Much like a wily octopus at an aquarium who kept stealing fish from a neighbouring tank that an ichyologist friend once told me about, he’d managed to climb out of the Box, go and get a toy from the play room, and then climb BACK in the Box where he sat out the five minutes quite contentedly playing with the retrieved toy.

Back to the drawing board, I guess.

Lovaas schmoovas

7 April 2010
Now, onto the assessment yesterday. First of all, I was in a total flap about it because not only did we sense this would be quite an important meeting, but also I had managed to lose the bit of paper that told me what time it was happening at. Usually that wouldn’t be a problem because I put all important dates (as well as many unimportant ones, like the birthdays of people I barely know) in my Outlook diary, but somehow amidst all the chaos of upgrading my computer to Windows 7 and reinstalling Microsoft Office, the diary entry about the appointment managed to get lost completely. I had a horrible feeling the appointment was at 9am, so we had R breakfasted and ready to go by 8:30, at which time the unit opened for business and I could call them to check what time his appointment actually was. It turned out not to be until 2pm.

Although the breather was welcome, this created all sorts of problems about what to do with E while we were with R at the unit. D, our heroic nanny, stepped into the breach and offered to take E with her while she went to babysit the family of three girls she used to mind full time but who she only sees on Tuesday and Wednesday afternoons now. I said I fully expected E to come home with painted fingernails and lipstick, but I draw the line at mascara. E had a marvellous time playing with the girls, especially the youngest one who seems to think of E as some kind of living doll whose utter cuteness is only marred by the occasional need to have her nappy changed.

We got R to his appointment right on time, which is at the same NHS facility where he has speech therapy so he thought he was going to see G, his lovely speech therapist, and started asking for her straight away. Instead we met with Doctors L and M, the consultant psychiatrist in charge of our assessment and the educational psychologist respectively.

Dr L is an efficient woman in maybe her 50s with close-cropped hair and a friendly but strictly professional manner. For some reason my gaydar blinks with her and I think she may be a lesbian. Dr M is a younger woman who looks partly South Asian. I hadn’t really warmed to her brisk, stictly professional manner back in November when we first met her, but she seemed more likeable this time - smilier, kinder in the eyes, more open to explaining what they were up to.

The object of the appointment was to do a videotaped assessment of R mostly for Dr M’s sake so she could look through it and review his social, communicative and play skills based on what she saw there and earlier at his pre-school. Dr L held the camera and I was a little concerned she wasn’t using a tripod, but I suppose they’re don’t need Barry Ackroyd levels of quality here. We were told to hang back and let them get on with it at first as they watched him react to the room full of toys, but in the end we interacted with R quite a lot and talked to them throughout.

As I mentioned, Dr M had observed R at his pre-school and written up a report about her findings, which she gave to us to read later. She played with him with some blocks, pretending first that a round, cylindrical one was a car and then gave it to him with a “your turn.” He copied her. Then she pretended to drink from the same block, as if it were a cup. Again, he copied her. I’m guessing this was to test his aptitude for imaginative play or maybe just his ability to imitate behaviour, and it looked like it was all going swimmingly.

Next Dr M got out a bubble-blowing gun and started blowing bubbles. R looked a little taken aback, but intrigued and with lots of coaxing from me and T he came forward and tried popping some tentatively, like they might bite. Then Dr M blew up a balloon, which excited him, but when she let it go and it flew around the room he freaked out. Given that the next day he was happily playing with a mechanical chicken that made a noise equivalent in decibel levels to the Fall playing on the Pyramid Stage at Glastonbury, it was an odd reaction, but you never know what he’ll be spooked by. The remote control car she got out next was just as loud, but he loved that, although he preferred to play with the car on his own.

She also got him to choose which he wanted: sweeties or biscuits from a couple of boxes, using the exact same verbal formula ("which one? You choose.") that G uses in speech-therapy and he got that right away, although he preferred to feed his sweetie rewards to his daddy rather than eat them himself.

A key test involved me trying to get his attention just by calling his name and then getting him to look at something interesting just by using my eyes, not pointing. That he didn’t get. The only way I could get him to look was by shouting his name several times, touching his arm to get his attention, and then waving my finger at the object in question like I was trying to land an airplane with invisible flags.

After about an hour, it was all done. The doctors fetched their diaries and we set up an appointment for a feedback meeting on the 27th of April to discuss their findings, at which R won’t attend. I asked when we were going to get a diagnosis at last, and it turns out it will basically be on that day, although they were still kind of cagey about it and kept trying to explain that there is a particular procedure they have to follow with all this. It was all very redolent of social worker-speak or lectures from Health & Safety officers.

But we pushed a bit more and I said that I expected that we’re going to have a diagnosis of autism at the high-functioning end. Dr L nodded her head, and later T said he remembered that she said something like yes, that she verbally agreed, but I can’t remember her actually saying those words. I suppose it doesn’t really matter – we’ll find out on the 27th.

Dr M said that she was going to recommend that the school focus more on getting him to concentrate on tasks and finish them because he flits around so much when he plays, although we noted that he can concentrate on books being read to him and favourite DVDs for quite long periods, it’s just that new environments like their examination room and school are too exciting. T and I conjectured later that they may tell us on the 27th that they think he has Attention Deficit Disorder too.

But the interesting thing was that they seem to think his verbal skills are coming on pretty well now and that he’ll continue to develop in that area. Where he seems to be really behind is in social skills, especially paying attention to other people, responding to his name, playing collective games and so on.

This sort of took T and me aback a bit. We’d been going along thinking he was really improving because we just see him and E as examples, and by his standards he is improving. When I see the difference between him and other kids at school, I clock it, but somehow I filter out just how different he is from them after 20 minutes.

One other interesting thing was that we mentioned that we were curious about the Lovaas technique, and intensive interaction therapy that requires an autistic kid to be coached for around 40 hours a week one-to-one. I’d read about it before, and wondered if it might help him although it sounds like an extreme solution. FAE is dead against it, and says it really just works by behavioural reinforcement and turns autistic kids into robots who say please and thank you on cue, but have no idea why they need to say it.

T’s sister C has a friend (R) who has a friend (P) who has an autistic child and R was telling C that Lovaas worked wonders for them. I told C that I’d heard it was very full-on and required 40 hours of practice a week and she got a bit huffy like I was poo-poo’ing it out of hand. This was all very typical of C who, since she’s training to be a therapist, thinks she knows everything about psychology and I’d clearly got her on the back foot by knowing fractionally more about this particular subject. Just out of curtesy, I’m going to call P and ask her about how it’s worked for her and hear about “her journey” with her kid as she rather ickily put it in an email, but I don’t think it will be for us. Just to confirm my suspicion, Dr M said that she actually worked in a Lovaas centre years ago and although she didn’t exactly slag it off she was very keen to insist it doesn’t work for all kids and it might not be right for R. I presume that’s another thing we’ll all discuss on the 27th.

Show me the bunny

7 April 2010

There’s a lot to catch up with this morning, and I only have a little time to write. It’s 7:02 in the morning, and T’s turn on baby morning duty. Usually this would mean I get to lie in until the luxurious hour of, say, 8am, but instead I’ve slipped off downstairs to write. For some reason I feel guilty about it, like I’m pulling a sicky from work.

Anyway, before I get on to what happened yesterday at R’s assessment, it’s worth noting that last Sunday was Easter and we took the kids to our neighbours the N---s for their annual Easter Egg hunt party. The N---s are toffs like T’s family (the two families have known each other for years, and T's dad is WN's godfather), and they’re always having parties with dozens of louche, semi-bohemian posh folk and their children of many ages are milling around, drinking, and playing either ping-pong, snooker, football, rugby, cricket or all of the above at once. I used to find the whole scene kind of intimidating and too sporty and posh by half, but I’ve got to know them better now and rather enjoy the hugger-mugger muddle of it all.

As per tradition, on Sunday the grown-ups and the older kids all ran around the N---s’ several acres of garden hiding Easter eggs for the little kids, and when the signal was given, WN (our host, who’s like a golden retriever in human form) set off the children in batches according to the year they were born, which meant E was one of the first to get going having been born in 2008. Me and my very dear friend A, who I used to squat with back in the day and is now one of R’s godparents, herded E toward the Easter eggs while T wrangled R.

In brief, they did great. Even at 18 months (well, I guess it’s 19 now), E totally grasped the whole looking-for-chocolate concept, and so did R.

He’s been weirdly obsessed with eggs, as in chicken eggs, for a while. He can’t stand the taste of the real thing but of course loves chocolate ones. If he spots a box of chicken eggs in the kitchen during a meal he has to try to get to them, even though the result is usually so disappointing, much like life itself. But this time it was all win-win, and he found lots (with assistance) and stuffed as many as he could in his mouth as he went along. At one point he found a chocolate rabbit and I had to take a picture of him. “Show me the bunny!” I shouted, pace “Jerry Maguire.” (Tom Cruise movies have strangely evolved into a sub-theme on this blog.)

Later, E and R played exceedingly happily on the N---s’ trampoline with half a dozen other kids jumping all around them. (For some reason, my children just don’t get how to jump with both feet simultaneously.) E sat in the middle, still shovelling bits of chocolate in her mouth, grinning from to ear with joy at being bounced, while R ran around the outside, occasionally making a lunge to pull another child’s hair but, reassuringly, pulling back right in time if he said his name warningly.

From a distance he would have seemed totally normal, just another little boy tweeking on chocolate overload. At one point he wandered into the huge 50-man football match that was in progress, completely delighted to be chasing the ball and everyone negotiated around him. It reminded me of a time when I went to go see a rugby between Scotland and France (one of the dullest two-hour stretches of my life, since I have no idea how the game is supposed to be played). One of the France supporters released a chicken onto the pitch. It just flapped around contentedly the whole game, flying into the air whenever players or the ball came near. R is like that chicken.

Padded cells

25 March 2010
Things have been ticking along nicely, with Spring coming and visitors visiting, and plans afoot to go to the States next month without the kids. R is in his happy zone these days, although he was under the weather the other day with a cold, so I kept him home from school. D put him to bed at lunchtime. (I was in my office on the phone to someone while reinstalling software after an update to Windows 7). Then D came in to inform that my presence had been specifically requested by R, who had said quite clearly, “I want mummy.”

This is the first time he’s ever asked for me. In fact, one of the earliest warning signs that he might be on the spectrum was the fact that, no matter how distressed he was, he never called for either me or T by name, a skill E had picked up before she was even a year old. Instead, he’d just howl like a wounded lion cub. It’s a mark of how far we’ve come that now he’s asking for me by name.

This last week he’s resumed a rather irritating habit of getting up on top of his chest of drawers when he’s supposed to be sleeping to play with the light switch, tear stickers off the wall and for some inexplicable reason, take the tops of Vaseline jars and smear the stuff on the wall. Because he’s climbing while still in his Grobag, an impressive feat in itself, he has an unfortunate tendency to fall off the chest of drawers and then scream like it’s our fault. T and I haven’t moved the chest of drawers out because it somehow depresses us that this will mean the last bit of furniture in the room will be gone, and all that will be in there will be his mattress on the floor, like the cell in a lunatic asylum. Perhaps it’s better to let him keep falling off the bureau until he realizes it’s no fun, although I’m worried he’s going to eventually break a limb.

Thank god it’s physically impossible for him to open the window in his room more than five inches, otherwise it would be like the opening sequence of “Antichrist,” albeit without the shagging in the shower. Otherwise, he’s developing very nicely, almost making conversation now as he asks for things with the full monty, “I want…” construction with hardly any prompting at all. He also knows how to say, “My name is R…”, and I think he’s getting to grips with how pronouns can change according to who’s speaking. The other night after he got out of the bath, he was hiding in the towel and then revealing himself with a theatrical, “here I am!” every time.

E is doing great too. I took her to Tumble Tots yesterday and she walked along a one-inch wide balance beam like it was a tightrope, admittedly with handrails, but the Tumble Tot helper and I were gobsmacked. I think she may be the really coordinated, sporty one that T half-secretly hoped R would be. At last, the fact that she was tiny at birth and is still dinky for her size will pay off in career options.

Our autism festival was on pause for a while, but resumed a couple of nights ago with the Bollywood movie “My Name Is Khan,” one of the biggest foreign-language hits of the year in which Shahrukh Khan (like, I’m reliably informed, Tom Cruise, Philip Seymour Hoffman and Brad Pitt all rolled into one in Hindi-cinema terms) plays an Indian Muslim guy named Rizwan Khan. Over the course of a brisk two and a half hours, Kahn, who has Asperger’s Syndrome, moves to the US, falls in love and marries a Hindi girl named Mandira (the actress is called just Kajol, like Cher or Madonna). He survives the anti-Muslim hostility post-9/11, but finds himself helpless when his stepson is murdered by racist bullies. Because he’s so literal-minded he takes grief-deranged Mandira at her word when she tells him to leave and not come back until he’s told the president that he’s not a terrorist. (She irrationally blames him for the kid’s death because he’d adopted him and so the kid, having been renamed Khan, had got more stick from schoolmates than he might have done if he’d stuck with calling himself Rathore, although I somehow doubt many racist bullies can distinguish that well between Indian surnames.)

So Khan goes on a cross-country journey with nothing but a backpack on a quest to tell the president, at the time George Bush, that his name is Khan and he’s not a terrorist. Think “Rain Man” meets “Forrest Gump,” but with South Asian accents. He meets po’ black folk in Georgia who accept him unconditionally, real Muslim terrorists (whom he reports to the FBI), and all kinds of other folk. There are other crimes and attempted murders, and generally enough action to fill your average daily soap opera for a year.

T and I were completely swept away with it all, even though the subtitles were hilariously badly translated, and somewhat infrequent to boot. (Sample: “When Zakir [Khan’s neurotyp brother] become 18. He went to america. He got scholarship at Michigan University. I felt very bad very bad when he was leaving. But I didn’t told him.”) In fact, the comedy of the terrible subtitles helped us get a little distance on the grand orchestral emotions on the display, and I might have wept all the way through it otherwise, especially in the last half hour which is sheer melodrama and all fab.

Once again, in a way like “Temple Grandin,” it’s a film about a character with autism but it isn’t only about autism. Khan’s condition creates and engine for the drama, but he’s misunderstood and suffers much more because he’s a Muslim rather than because he’s someone with ASC. The script sees nothing odd in the fact that this incredibly vibrant, beautiful woman should choose to marry this odd guy who shuffle walks, can’t make eye contact and has a violent phobia about the colour yellow. But Khan the actor has incandescent star quality. I can see why something like a quarter of the world’s population worship him like a god.

A friend of mine reviewed a few months ago and was telling me all about it and said he really wanted to know what I would make of Khan’s autism acting, like I’m some kind of expert or something now. The funny thing is, because, as far as I can work out, there’s such a huge range of behaviours associated with the conditions there can’t be one right way to “act autistic” on film, although I guess people who know a little bit about it will expect the actor to do a few key tics, like avoid eye contact, talk a little funny, walk on tippy-toes a bit. They’re like the universal signifiers, even though not everyone with ASC acts that way. It’s like in the old days when people played characters with Down’s (now there’s enough Down’s people around do the roles themselves) or mentally impairments used to talk funny-shouty and smile too much.

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.

Late-night update

4 March 2010
Something amazing happened tonight. I'd put E and R to bed, and as per usual, after reading him a book ("Curious George" for the first time) and turning out the light, I heard him start up his nightly babble in the dark, giggling, chattering, singing a verse or two of "The Wheels on the Bus" and the "Alphabet Song" (which in his version includes some experimental letters, not yet represented in dictionaries). There was a sudden cry of alarm which usually means he's done a poo and wants a change.

I went in and found he had managed to wiggle out of his Grobag and indeed smelled a bit whiffy. "Nappy?" I asked, somewhat rhetorically. "I want nappy change," he said back, looking me in the eye. He just generated his own sentence, and without prompting, in order to express a need. He might as well have recited the Gettysburg Address, I was so knocked out. I cheered with delight and covered him in kisses. He looked very chuffed with himself. Maybe we'll be able to start potty training before he starts college.

The Neurotypical Girl Next Door

4 March 2010
Our home-programmed autism film festival continues. The other night, T and I watched “Adam,” which I’d seen already but T hadn’t, in which Hugh Dancy plays a guy with Asperger’s Syndrome, or “aspie” as he calls himself in the movie. Both T and I welled up a little at key points, but it didn’t provoke the full-on saline soaking we got from “Temple Grandin” a few nights before, mostly because it’s not that good a film. The script is too schematic, too jaggedly assembled, like it started off as someone’s personal passion project and then got rewritten three times too many after notes came back from Fox Searchlight.

Basically, the title character (Dancy) falls in love with a pretty neurotypical neighbour girl (Rose Byrne) named Beth after some meet-cute stuff, but things go wrong when he’s insufficiently supportive of her troubles when her shit of a father gets convicted for fraud. The plot point that Adam never lies is planted early on, apparently one of the defining characteristics of people with ASD because they’re so literal-minded. Then, in order to have some kind of drama-generating conflict for the third act, they have him freak out when he finds out she lied to him. Because it’s a little indie-movie with minor-but-not-totally-negligible stars, it’s allowed to have the main characters fail to sustain their relationship at the end, but they still Grow Because Of Their Experience. The dripping soundtrack, all little-known singer-songwriters plucking guitars and twittering semi-archly about hipster shit, is particularly off-putting for us.

Watching through the prism of parents of a kid with autism, T and I have interestingly divergent reactions. During the early scenes, where you see Adam coping with life alone after his father has died, eating the exact same food every day, going to work as an electronic engineer, having just the one friend (a kindly, salty-tongued older black man, of course), I think, here’s a portrait of someone with the condition who’s coping pretty well. T thinks exactly the opposite. He sees someone who’s lonely, adrift, not high functioning at all.

When it’s over, we talk about our fears for R’s future. Will E always have to look after her older brother? Will he ever have a job, get married, make friends? T says he can see an almost-worst-case scenario where R is living at 40 in a sheltered housing unit, being visited once a week by a social worker to make sure he’s not eating food past its sell-by date. If we make enough money to leave him cared for, then – whoopee – he could be living in a slightly larger, privately owned flat somewhere while a paid-for carer comes to see him three times a week to make sure he’s not eating food past its sell-by date.

I worry a lot about how R’s condition will affect E. At the moment, she totally worships her big brother. When he’s not around, because he’s still asleep in the morning, or out for the afternoon visiting his speech therapist, she wanders around the playroom looking for him, calling for him like a lost sheep. When she tries to give him things – her dummy, a book about tractors she thinks he’d like to read, her juice – he usually ignores her. Even the fact that he usually hits or knocks her over once a day doesn’t seem to put her off him. She loves him desperately and gets almost nothing back. I fret this will set some sort of pattern for life, with her ending up falling in love with emotionally unavailable shits, like I used to. Not that R’s a shit or anything – I just mean she could get stuck thinking love can only go one way.

T and other friends try to reassure me that sibling relationships don’t usually serve as models for the romantic attachments we make as adults, but I’m not convinced. Even if she copes really well with having R as a brother, I worry she’ll miss out on things and be, in some ways, like an only child. I vaguely consider having one more child, but that’s too close to the “heir and a spare” model. And anyway, research seems to suggest that the chances of having another autistic child increase as you get older, especially if it’s a boy. Even if we have another neurotypical kid, would E totally bond with the second child and leave R left out on his own, literally spinning his wheels in a corner?

On the upside, we’re starting to notice that she’s having a positive influence on him. He sees her trying new foods and has a go, even if he spits out the first mouthful. If he sees her having fun playing a game with us adults, he sometimes wants to join in too. He rolls his Matchbox car to her across the breakfast table, singsonging, “Roll the car to E!”, knowing she’ll roll it back to him. Okay, it’s not like they’re playing chess together, but it’s a start.

Green Ball... Red Ball...

2 March 2010
Yesterday, R went to see his speech therapist. As soon as I say, “Let’s go see G,” he starts chanting one of her mantras: “Green ball… red ball… which one? You choose?” which she always asks him when they play with a ball maze. He still hasn’t quite mastered the choosing part, maybe because in all honesty nothing particularly different happens in the maze if you drop a green or a red ball in it. They all go down the maze the same way, so perhaps R can’t see the point in choosing.

At the NHS centre where speech therapy happens, he can’t wait to get through the gate, and without prompting asks G to open the door for him. So far so good. But then it turns out G has to do a test on him at the request of Dr L in preparation for his upcoming assessment, to see how good his comprehension is. She lays out a selection of eight toys – a teddy, a doll, a chair and table, and so on – along the table and asks him to do things like “sit teddy on the chair,” or “make dolly touch the table.” She asks me not to say anything to prompt him, and I sit there squirming, willing him to do well on his test, ever the helicopter mother.

Some requests he gets straight away, but then he starts to slow down. G, a cozy maternal middle-aged woman with a voice like golden syrup, starts putting dashes instead of ticks down on her form when he doesn’t respond. This isn’t going well. R gets bored and asks for her tractor. He doesn’t want to talk much today, and won’t respond when we feed him his lines like “Pull cord!” “Take off lid!” or “I want bubbles!”

We’d been doing really well with the “I want…” stuff before I went away on a business trip, getting him to express his desires with three words (“I want ham!”) instead of just saying “ham!” or “cheese!” or, worse still, grunting in frustration. G and I conjecture whether he’s been upset that I’ve been away, or upset that she’s been away for a couple of weeks. Trying to figure out what’s going on in R’s head is the number one occupation for everyone around him, like we’re all Kremlinologists during the Cold War, trying to divine what Brezhnev’s up to with troop movements on the NATO border. Will he invade? Is he just bluffing? Is he going to pull out of Afghanistan?
When we do get to the ball maze, he imitates G by almost dropping the red ball into the blue hole, then saying no and hovering it over the green hole, then saying no, and then again with the yellow hole before slamming it down the red hole with satisfaction, as if he’s set off a bomb. This is a good sign, G tells me. Kids who do that pretending to drop the ball imitation usually ended doing well. Hooray!

At bedtime, he doesn’t want me to stop reading stories. He lays his head on my shoulder and sits stock still while I read “Tatty McTat,” a new one he doesn’t know that well, as well as “Bear on a Bike,” an old favourite, in which a bear takes a variety of vehicles (bike, boat, carriage, rocket, etc.) to reach a series of exciting places (forest, island, the moon). His favourite is the rocket.

Hello, R!

1 March 2010
R has good days and bad days. At the moment, we’re going through a run of not-so-hot days. He’s more in his own world than usual, staring off into the distance, not responding to his name, “good morning,” “Hello, R!” or “Don’t hit your sister!” He works through his drawer of cars one by one, laying his head on the ground so he can watch the wheels going round as he pushes them along. You have to drag him physically away to play with anything else, but he usually will comply for a while. He’s really very sweet-natured that way.

His latest joy is playing with his penis. Aware now that we’ll try to stop him from doing this, he hides behind the sofa to rub it, although it’s not shame or furtiveness, just a practical method of getting his jollies where we can’t see him. Because he can reach inside his Grobag at night to play with it, he manoeuvres it out of its sheaf of nappy and pyjama bottoms and massages contentedly away at it. For a week now, everything has been soaked through with urine in the morning. T suggests I find pyjamas on the internet that have drawstring closures, to keep him from getting it at his willy, but part of me wonders if we shouldn’t let the poor sod have his fun. We don’t want to give him a complex about it, do we? D, our nanny, has tried telling him like a Victorian governess that he’ll go blind, half-joking because she knows as well as I do that he doesn’t understand what she’s saying. I’m not sure if I approve of this approach, however jocular, but as per usual I’m too timid to suggest she shouldn't say that. I want D to be happy because I know taking care of R is a tough gig.

At least he’s responding to music very well at the moment. We sing “The Wheels On the Bus” over breakfast and he makes eye contact, smiles, then positively grins with pleasure as he windmills his hand around for the “round and round” part, giving it wellie at the top of his voice. I get enormous pleasure when I can occasionally coax him to sing along to “Close to You,” which I used to sing to him every night when he was littler, drinking his bedtime milk. He’s mostly in tune, or at least as off tune as my own singing. I wonder if he had a mother who could sing better, he’d have perfect pitch. At the Baby Music classes he goes to on a Monday, he’s the only kid who really sings along. T has taken him there today for a change, which has carved a space for me to write this. I’m glad because I know it will give T a chance to feel pride seeing how well R does some things, sometimes even better than other kids.

Last night while he and E were asleep, T and I kicked off our home autism film festival with “Temple Grandin,” the new biopic of the famous autistic veterinary scientist, and cried steadily all the way through it. I’d been looking forward to seeing it ever since someone I knew posted a link to the movie’s trailer on Facebook with a mocking comment. Soon, lots of people, including some good friends of ours, had joined in the ridicule. I felt strangely hurt and protective of the movie because round our house, Temple Grandin is a secular saint, the woman who overcame her syndrome’s worst problems did something useful with her life.

The trailer was cheesy, the way trailers are, full of shots of Claire Danes as Grandin talking in that stilted way the real Grandin talks (a bang on impersonation, as it happens). The people on Facebook sniggered about “doing the full retard” à la “Tropic Thunder,” and Jodie Foster’s “blowin’ in the wiii-nnnd” autistic speil in “Nell.” There’s something embarrassing about seeing actors play autistics and mentally handicapped people, the naked neediness of thespians fishing for awards by playing damaged people. In the old days I would have sniggered along with them, but now it’s all too close to the bone. Now I all I can hear in their sarky comments is the sound of class bullies in the future teasing R when he talks funny in class.

The movie was better than the trailer suggested. Touching, but never too sentimental, it used a similar device to the one in “A Beautiful Mind” to show how Temple thinks in pictures, but done with a light touch. It was even nice to see the film is as much about her work with animals it is about her autism. Sure, it felt a little made-for-TV but in a good honest way.

The bit that really got to me was a scene showing Temple’s mother Eustacia (Julia Ormond, nice to see her back in work) sitting on the stairs with the young actress playing Temple aged four or so (played by an unknown child actor, enjoying an easy gig since all she has to do is stare into the middle distance). Eustacia is showing Temple flash cards of a dog and a cat, and sounding out the words slowly, trying to get Temple to say the word back, but she keeps turning her head away to stare at the pretty chandelier. Defeated, Eustacia gives up. “Mommy needs a five-minute break now,” she says. And a cigarette, I think, projecting.

That was me a year ago. There had been the odd words. I think R’s first, around five months when I was feeding him something, was “no,” but then after that it was just sounds, random, vaguely comprehensible babble that we “interpreted up” as words. We were in California visiting my family and T had bought R a big double handful of Matchbox cars from the thrift shop to play with, which he loved. At every meal, we let him play with the cars, and I would point to them over and over again saying, “car,” “car,” “CAR!” Eventually, he finally looked me straight in the eyes one day and said the word back: “car.” That was really his first word, aged 20 months.

I just know that while watching the movie that T and I are thinking the same thought: Temple Grandin didn’t speak until she was four, and R is already talking now, at two and three quarters! He won’t be so bad! There’s hope! I wonder if every parent of an autistic child makes these silent calculations when they hear about another autistic kid, holding up mental yardstick in their minds against their own child’s development. We feel luckier than the ones who have older kids who are still not talking, or hate to be touched (R, thank goodness, loves to be hugged). We envy the ones who seem to have higher-functioning kids, who might someday “pass” for normal. Watching neurotypical kids doing neurotypical shit, even my own daughter E, makes my heart break for R.

R hasn’t been officially diagnosed yet. When people ask, we tell him that it’s still pending, although he has already been to see the local authority’s special-needs unit that does the diagnosing. He had a big assessment day back in November, with a consultant psychiatrist who asked us questions for three hours while two psychologists and a speech therapist watched him play. T and I thought this was a preliminary meeting, not the Big One, so we were relaxed as we responded to the questions, our answers slightly different sometimes. They thought we were taking it all very well, when really we were just confused about the date and hadn’t taken in that this particular meeting could change the course of his life.

At the end, they decided they couldn’t give us a diagnosis and deferred for another six months, which means his next assessment is in four weeks. What seems clear is he’s not quite neurotypical, the term they use to describe what the rest of the world calls normal. Yes, they said, he’s showing some signs of autism (lack of eye contact, impaired verbal development, lack of interest in social interaction), but there are many signs he’s not showing -- yet. He’s not very compulsive, for instance, or obsessed with things being in a certain order or routines being followed. The consultant asks, for example, if he’s ever upset by the way we drive. My driving would upset anyone, but I know immediately what she means having read the misery memoir “A Real Boy: How Autism Shattered Our Lives - and Made a Family from the Pieces” by Christopher and Nicola Stevens in which a severely autistic boy freaks out and tantrums every time his parents turn left in their car, forcing them to spiral round the block to get home on every journey. R is just happy to be in the car, wherever we’re going. Cars are very much R’s thing.