Of boys and horses: what does autism awareness mean?

'Do you know the way to Pancarlik church from here? No, we don't have a car. We want to walk in the valley.' 

We get directions. In Turkish, of course. We check which of us have understood. It doesn't matter much what I understood as I can't so much as tell my left from my right most of the time. There's a hamam involved, the back of a castle, and you should take the little path to the right (or left?) not go straight down the valley to Urgup. Oh yes, and it's six kilometres.

We take our time to leave the castle top cafe, giving the patron just enough time to bring his friend who knows the region like the back of his hand. He explains in a bit more detail (turn right at the hamam, and walk till you see the back of that castle and then go down to the valley). We're still not convinced we're going to make the 6km walk without getting lost. I joke to our minibus driver that if we're not at Pancarlik in 3 hours he should send the helicopters. We grab our coats and look in the direction we're supposed to go (we think). And then, just in time, the guy from the cafe is here and he offers to guide us. It's a good price. And he'll take us to a church on other side of the valley first. He assures us he'll take it slow, for the children. Off we go.

The church is amazing. And we wouldn't have found it without him. You have to climb up a stiff side to see it's here, even. And it's not in either of our guides.
He's giving us all a hand on the difficult passes, and carries Charlotte's bag.
It's beautiful.

Then it's down again, and in the opposite direction.

Within a hundred yards, we freeze. Standing before us, are six horses, and two dogs. The horses are about to be mounted by a small tribe of French people in full horse-riding attire. Some of them are very young - younger than Max. Their beige trousers and black jackets look incongruous in the wild and muddy landscape. We freeze - Max screams.

I don't have much time to explain. I tell the man: he's autistic, and he's really scared of animals. Especially dogs. But horses too. The man nods and picks Max up. You're going on my shoulders, he says. You'll be fine. Max screams again a bit when we cross the area where the horses and dogs are. One child holds a dog, and a woman tells him to move it out of our way. Another woman tells Max not to scream. I tell her he's autistic and scared. I don't know if she's convinced, but she shuts up.

And then we're through. Max is calm. He comes down. He and the guide chat for a bit. Then the guide asks me why Max is afraid. Is it an allergy? Has he been hurt by a dog or a horse before? I say he's autistic. Then, as it doesn't seem to mean anything to him, I try to explain, in my skeletal Turkish. It's a mental condition. It means he has communication problems, speech problems, and he has phobias. He nods. That'll do.

We trudge on for six kilometres. jumping over the river every five minutes or so to get to the less muddy side. It's a bit cold, but after a while we still have to peel off a layer or two. The landscape is amazing.

The children are used to long walks, and they're mostly enjoying it. When Max gets tired, our guide carries him. Or he races him and then they sit down to wait for us. When they sit, I notice that he puts his hands on Max's head very firmly, the way Max prefers to be touched, the way that calms him. The way you're supposed to touch animals, and especially horses to reassure them. Very quickly, the two develop a rapport. For the entire walk, they're together.


Echolalia, Echolala: don't knock it.

Before Max was diagnosed, before we even took him to see that first psychiatrist who told us all was fine but, when she saw us one year later, acted surprised that we didn't know Max was autistic and said she must have 'forgotten' to tell us - bitch - his kinder-garden teacher suggested all was not well with his linguistic development. Everything he says seems to be repeating something he's heard, she said. Even the tone is the same. When he says 'don't do that' (in Turkish of course, which is the only language he spoke back then), he's copying the voice of his teacher. This, she says, is echolalia. And it's not a proper way for language to develop.

She was right, in that echolalia can be a symptom of developmental disorders, like autism. Many autistic children who don't have 'spontaneous speech', who don't volunteer information about themselves, who don't answer questions, who are not able to make small talk, still speak a lot. That is to say, they repeat things they've heard other people say, on tv, etc. It just isn't relevant a lot of the time. Max used to rehearse entire conversations from his favourite tv shows before he could even say what his name was. Actually that's not very representative, as it's only recently that he's started to answer the question 'what's your name?' by anything other than 'what's your name?'. Let's say, instead, before he could ask for a glass of water.

We worried, of course. And shortly after this we did take him to see that psychiatrist, and then a speech therapist. But we were always slightly resistant to the idea that this repeating of what he'd heard was all bad, despite his teachers' assurance, from the height of her status as a psychologist, that it was not healthy.

I'm still not sure what the consensus is. I've recently begun to think that with autism, after a while, it makes more sense to think hard about the particulars of the situation you live with, than find out every thing about what everyone thinks - including the 'experts'. Not because every one else is wrong - but because every person with autism is different, and because you have to work within your particular environment and resources which people on the internet can't possibly know the details of. So after an initial bout of frantically reading every thing there was - which proved extremely useful to get started - I'm now dipping in and out, and mostly concentrating on understanding what makes our son tick. And here's what we've noticed.

Nearly all the things Max has been repeating for years are now part of his active vocabulary. They've helped shape his social interactions, his imaginative play, and inquiry. TV shows he used to repeat at odd moments are now part of his creative play. He plays 'tweenies' and 'teletubbies' and creates adventures for them based on actual shows, but also invented. (And believe me, if they were just recreations of what he'd seen, I'd know. There isn't one episode I haven't seen at least a dozen times.)

One fascinating feature of his echolalia, that always had us thinking that it wasn't quite as mindless as some people thought, was that he could translate everything he said. He'd start off repeating something he'd heard in Turkish, and pretty soon, he'd be saying it in French too. Just as inappropriately, but in translation. Now, I don't really know about the mechanisms of translation in trilingual autistic five year olds (which is how old he would have been then). But then again, I doubt anybody does. And I get kind of pissed off when people claim they do. Not like there's a huge sample for them to conduct research on, is there?

But here's the thing I was getting at - a bit rambly today, I'm afraid. Blame it on the late night return from our weekend in Cappadocia.

On our way to Goreme three days ago, we travelled next to a German couple who were clearly holidaying in Turkey for the first time. Max sat next to the man in the mini bus. I suggested he say 'Hi'. 'Merhaba', he said. 'Nalsilsiniz? Ben iyigim, tesekkurederim'. Or something to that effect. So I pointed out that the nice man probably didn't speak Turkish. Max is normally good at judging what people speak, but he wasn't really paying attention, too excited about arriving.

So now he takes one look at the man and works out he's not French, but probably speaks some English. So he pipes up: "Hi, How are you today? We're going to Cappadocia today!" All with perfect accent and pronunciation. Repeat three times. And this was a mixture of something he'd heard in the Tweenies, that he's been repeating recently and probably conversations he'd overheard between grown ups about Cappadocia. For how else would he know how it's pronounced in English?

So here you go: a mixture of echolalia and properly learnt language makes for perfect social creativity!

I was prompted to write this post by MommyleBron's post on that same topic. Her daughter has a slightly different form of echolalia - she seems to be a lot more verbal than Max, and quite a bit older, so that figures! - but I found Mommylebron's insight really interesting if only because it shows how differently a condition with the same name can manifest itself. 


Social stories for Cappadocia

I've spent the last two hours drawing social story boards for Max for our upcoming trip to Cappadocia, so I thought I'd share them with you. These took a while to draws as I did them on cardboard with an ink pen, and spent some time thinking through our schedule before hand. Everyday ones are usually quicker.
When I wasn't completely sure as to what we were going to do, I left the pictures in pencil, so I can change them later on.
Also, I didn't colour them, as I'm really bad at colour. But they would probably look more attractive if I did.

The first one is about how to behave at the hotel. I'm especially hoping that Max won't be too loud first thing in the morning. We usually stay in the same place at Goreme, so the story is reusable.

For those of you who are not familiar with Cappadocia, the funny pointy things are fairy chimneys, and in the early mornings you can see a lot of hot air balloons floating around. The big round thing Max is floating in on the second frame is a jacuzzi. One reason we love this hotel is that even though it's cheap and simple and the rooms are carved in the stone, the bathrooms are huge and the children can have baths! The hotel's name is the Flintstones, and I highly recommend it.

The next two cards are daily schedules for the saturday, sunday and monday. We come by coach. It's a five hour journey with a break in the middle. The second day we hire a driver by the name of Zekerya bey who takes us around. The third day we usually just go for a walk and then hop back in the bus to go home. We pretty much do the same thing everytime which really helps with Max! Again, I'm hoping I can re-use the cards by just changing the dates on them. (I had to write them as Max is into dates big way).

This will be the first time I use anything as complete for a trip. I'm hoping it will help smooth out some awkward moments. I'll let you know!


Overcoming my hatred of Teletubbies through crafts and autism

Well, not quite. But it is a first step.
Before I tell the story and show you the pictures, you need to understand the depth of my hatred. I understand that all parents who have been subjected to them hate the teletubbies. Also aunts, uncles, godparents, babysitters, friends who drop by when it's on, etc. I know. Bear with me. Most babies who can will insist on watching the teletubbies as often as possible. They will make it clear early on that unless you put them in front of those post-apocalyptic creatures who take orders from a shower head, on a regular basis they will be unmanageable. You will not be able to have a shower, look at your email, or go to the toilet. Your life will be over. For a couple of years.

Now what you need to understand is that not only do I have two children, thus doubling the enforced teletubbies watching period, but the second one is autistic and has decided, not only that the teletubbies were his favourite show, but that he would use them as a learning spring board. Basically, the little bastard has made impossible for me even to consider weaning him off the Tubs. He's eight years old.

I have suffered for ten years now. I have watched them in English, Turkish, French, German, Russian, Czech, even. I know all the stories by heart. We have re-created all the sequences involving wind-mills, scary lions, trees with birds on them, flying sheep, etc, with drawings, cut out figures, plastic toys, legos, etc. We recite them on a daily basis. We have learnt much from them in terms of language, science, culture and social interactions. It's been painful, but fruitful.

Last week, we moved on to something new. Max decided that he was going to recreate a craft activity that he'd seen on the teletubbies. He said he would need some paints, green, yellow and red, some washing up liquid, paper, and a straw.
We asked him to make a list.

 So I went and got all that from the kitchen drawer that contains everything we're ever likely to need for crafts. I realised that we're all out of finger paints but for green, blue and orange. So we used that. And here's what we did with it.



Rather unimpressive resulting picture

So there you go. The teletubbies are helping our autistic son be creative in a self-directed way. That's something, I suppose.


Gearing up for autism awareness month.

I'm not doing a Portrait of Autism post this week, as I sort of did two last week.
But I wanted to tell you that I've been posting about autism on my new blog too.
But be warned before you go: these posts are in seriously bad taste and contain very bad drawings. In fact, some of you might want to stage an intervention to stop me using Linux's Kolorpaint. I'd understand. And I'd discreetly open another blog under another name.

But one thing I realised when writing these posts is that I've never made my views on the vaccination and autism debate clear here. So, at the risk of alienating readers, here you go: I don't believe vaccines cause autism. I believe it's important to carry on vaccinating children. That's it.

So if you want a laugh at my expense, please go visit my new blog and read my two autism awareness posts, here and here.

And while you're at it, please subscribe to the RSS feed on the new blog. Unless you do really feel I should quit, which, as I said, I'd understand...
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