School days, blood pressure days.

It started when he was four. Some days, he just didn't want to go to school. We'd have to carry him kicking and screaming into the school bus, knowing that he'd probably be allright once he got there. The kicking and the screaming was always for us only, with other people, he would be calm.

Then he got a bit older, and a bit bigger. Carrying him kicking and screaming no longer was an option. Once he'd started big school, the screaming would begin at 6.30 in the morning, getting up time, not wanting to put clothes on time. No longer for our ears only, it woke up the neighbours. Some days we'd manage to make him go, some days not, and then, we'd have to make a fast decision as to who would stay at home with him, whether we could get a last minute childminder to come, whether we could afford it. Then we'd have to find time to make up the work we'd missed, somehow, find the money to pay for the extra childcare.

Really not knowing what to do, I contacted a forum for autistic people and their family. What do you do when you child won't go to school? The responses were not helpful. How dare you keep your child away from school, they asked? Would you allow a non-autistic child to miss school? Do you think his education doesn't matter because he's autistic? Why don't you just tell him he's got to go?

I pictured myself telling him, over the screaming. At the time he was just beginning to talk, and mostly in Turkish, at that, a language I had no command of. I felt powerless. Another person advised me to make sure he had an unpleasant day if he stayed at home: no toys, no videos, just work. I didn't even try it out. Max in an worked up, not wanting to go to school state, was a head banger. At the slightest contradiction, he would begin to scream at the top of his voice and bang his head hard, on the floor, on the wall, on the furniture. I couldn't let that happen. I had to pacify him. Just do it, they'd said. Don't let him bang his head, they'd say. I couldn't even begin to imagine how it would be done.

Then in the second semester it stopped. He started to go school every day, or nearly, quite happily. We became used to having our days to ourselves, free to go about our work, and with a little bit of time spare at lunchtime to get together, my husband and I, to discuss strategies for the following day, just in case something went wrong. Often we used that time also to discuss how to help Max in other ways. We decided to keep him from school one day a week, Friday, so he could go to his special ed. classes in the afternoon and not be too knackered. We worked out how to use social stories to communicate with him better and help him deal with his anxieties. We found a way of getting help for him in the school, even though there was no real provision for that kind of thing here.

Over the following year, we had some scares, some nervous moments, he did miss school a few times, but we were able, mostly, to write it off as him not being quite well: a lot of autistic kids aren't great at recognising when they're sick, or communicating it. So we would assume he was and he'd go back the next day. On the whole he had a great year. He changed a lot, he learned a lot.

Then it started again this November. At first, we'd think he was sick. And he was, at least some of the time: we were all plagued by some nasty colds that just wouldn't go away. But, now more verbal, he made it very explicit that he did not want to go to school. He no longer wanted to work, get up in the morning, he was going to stay home, play and draw. A couple of times we managed to drag him to the school bus. Then we got a phone call from the driver saying he wouldn't come out to go into the school building. The teachers managed to coax him out, but Max didn't do much that day, and the next day, he stayed home.

This dragged on until the Christmas holiday, during which he spoke of going back in January fairly enthusiastically. His teachers were very sympathetic. No one told us this time that we just had to make him go. No one accused us of being bad parents, or not trying hard enough. This morning was the first day back. He got up. Reluctantly let me put on his clothes. Complained of tummy ache, so didn't eat. Refuse to brush his teeth, and kept up a low pitch moan while I was putting on his coat. Downstairs, with his dad, he ate a pastry, and waited for the bus, all the time keeping up a monologue in which he told himself he had to go to school. When the bus arrived Max froze. My husband picked him up and carried him, like a marble statue, to the car, slid him in and left. No screaming.
Back home, my first thought was to switch off my phone, so I didn't get the call from the driver telling me things hadn't gone well. I switched it back on immediately, of course. No call came, so I imagine things went ok. Tomorrow is Friday, his day off, so we'll have till Monday to figure how to make him go back. Maybe he'll be fine. We just don't know.

I hesitated to publish this, because it seems too much like a rant about how hard our life is. It isn't. Hard, I mean. We're lucky that we've got jobs that pay enough for emergency childcare when we need it, that we've got a very flexible child-minder, that we live close enough to work that we don't lose a lot of time in commuting, that there's two of us, that our time tables are such that we can box and cox without too much damage to our careers most of the time, and I could go on. But it's taking its toll, on our health - hence the title - as well as our careers. The fact that there is no obvious solution and that a lot of people are unsympathetic makes me wonder how many parents are in that situation and just don't bother talking about it. Talking about it with friends often leads to them saying 'most kids don't like going to school'. If you're in the same situation as we are, you know this isn't the same thing. And if  you want to talk about it, we're here. 

Portrait of Autism #18

'He's not autistic', he tells me, three lines into our conversation. 

It's my son, he's talking about, not his own, the three-year-old struggling to escape from his father's grasp so he can slide down to play on the floor. Not quite his business, you may think. Except of course, that I'm at the special education centre, where autism is everybody's business. He tries to explain, but he struggles, as his English is not what it used to be – he studied at an English language university, as I know from a previous meeting. Max can speak, he wants to say, he's friendly, so he's not autistic. I point out that even now that Max has made so much progress, we're still experiencing quite a few difficulties related to his autism. The fact that if the slightest thing freaks him out at school he refuses to go the next day, and is incapable of telling us why. The fact that he still has temper tantrums that make us worry the neighbours will report us to security, again. The fact that the rare conversations we have with him are only ever about what he's drawing or transportation, who lives where and where we're going to on holiday. Not that I'm complaining: it's wonderful that he can speak at all, the tantrums are a fraction of what they used to be and he goes to school often enough that he's actually learning stuff.

All I can do...

A couple of years ago, Rachel Cohen-Ruttenberg wrote on her blog about Simon Baron-Cohen's claims regarding empathy and autism. You're wrong, she said. Autistic people do have empathy. In fact, they very often have too much, which leads to a sort of paralysis of response. What do you do when the outside world is seeping through every pore of your being? You just close down. Now, Rachel know what she's talking about: she's autistic herself. Also, her argument has the merit of making sense, whereas SBC's arguments only really hang together because they tie with well accepted cultural stereoptypes, such as: boys like cars and don't communicate. Girls like dolls and talk all the time.

But Simon Baron-Cohen is not a snob, no, not he. So he agreed not only to read Rachel's post, but to respond to it as a guest poster in a blog.

Unfortunately, as he is a scientist, his hands were somewhat tied. All the poor man can do is 'look at the evidence'. And that evidence points clearly in the opposite direction of Rachel's own experience or that of other autistic people writing for her blog "Autism and Empathy".

And that evidence is first rate: SBC has asked a lot of autistic people, non autistic people and their parents to fill in a questionaire, asking them how empathic they are! This questionaire even has a proper scientific name: the AQ for autism quotient. And the you can find it on the web to find out if you are autistic.

So sorry Rachel and every one else: we simply cannot disregard this evidence.

A Welsh bestiary

Max is not big on animals. I often feel a twinge of envy ('Your kid's autism is better than mine'!?! - I know...) when I read about autistic kids who get help from having close relationships with dogs or horses. Max is just afraid of them. It's been a pain at times, as animals do get around. But mostly, I've felt that he missed out not only on fun with cuddly beasts, but on a whole learning experience that other children get from talking about nature.

Well, things did start to change for the better during our Welsh holiday last month. Max was on the whole calmer around animals, able to talk about them and learn from them.

He went fishing in rock pools with a little net: proudly caught a dead crab, all by himself, and marvelled at the tiny shrimp and catfish his daddy captured for him. He also enjoyed throwing them back in the sea, so we had no floaters to deal with.

During our cliff walk to Aberystwyth, we were able to talk about sheep, and how they give us wool, and cows and how they give us milk. A few days later we visited a fantasy farm and Max pulled on the udders of a plaster cow.

I took him to a small zoo where he was given a cup of raw veg and peanuts to feed the animals. He let me handle the actual feeding part of it, but was absolutely delighted to see the squirrels eat the nuts.

But his favourite creatures were definitely the gulls, despite the fact that there were so many of them, that they came very close to us, that they were loud and aggressive, he loved them. He sought them out, imitated their cry, and walked up close to them. A week before we went to Wales, he was still scared of pigeons.

Today, he told me he'd like to have a cat. 

A few bestial encounters.

Oh, one last thing. If you liked this post, would you mind terribly clicking on the RSS feed, here, or the Google connect buttons (top left), or by email at the bottom of this page? And if you didn't like it, you might still want to look around. There's three of us, you know, so you're (almost) bound to find something you like. And then, if you've still got time, you could share this post or stumble it, or both and get in touch with your local tv station to sing our praises. We'll love you forever.

Blue Island Ceramics

On our second day, we fight back the weather by finding an indoors activity that is such that we'd rather do that than be on the beach anyway. We go and paint pots at Blue Island Ceramics. We're shown into a studio with two big tables and shelves all around, covered in white pieces of pottery. We're told to choose one each. Emma, step-sister in law, picks a milk jug and her daughter, Lottie, a box shaped like a cup cake, then Charlotte chooses a plate, Max a mug, and Bill and I decide we can do a bowl between the two of us, so we can also help (keep an eye on) Max. There was a dog outside, but Granny Gaby, step-mother-in law, mindful of Max's little quirks, has had it put inside straight away so Max is fine. No all we have to worry about is making sure Max doesn't break anything. He doesn't normally, but that's how we tend to react when he's in a new environment which is a bit close.

On the table there are numbered pots of colours. There's a tile that shows how each colour will look once it's cooked. And there's illustrations on the walls. Zana, the owner, shows us what to do. We clean our things first with a wet sponge, then we apply a first coat of paint with a brush, and a second with the sponge. We need to pick, design, get started. 

Social story for travelling by plane.

We're doing it again, attempting to take a holiday in the UK. Two years ago, it was a bit of a fiasco as far as Max was concerned. He had daily meltdowns because he wanted to go home. We travelled around far too much, to visit relatives, go to a conference, and even took the train to Paris for a couple of weeks. And we had a huge amount of trouble getting Max into a plane - he had to be carried in screaming a couple of times. Not fun.

Then, last year, we discovered social stories. Drawing things for Max before they happen really worked. He would know what to expect, would rehearse it in his head, and be prepared. We drew some when we were going to fly to the coast to holiday with Marianne and her family. Max wasn't reading yet, but he understood pictures, no matter how sketchily drawn, really well. We got him there and back without too much problem, and there were no major meltdowns while we were there. It was a good holiday for all. No mean feat.

Then last month we went to Cappadocia and I drew some very detailed social stories about travelling and being there. Because Max can now read I also inserted quite a bit of text, which enabled me to get more detail into the sequences. This was a success. Max loves going to Cappadocia, but he always gets nervous at various points during our stay and that means he's more likely to have meltdowns. This time, he was relaxed the whole time, enjoyed every moment, and was even able to take in small variations in the plans.

So now our plane tickets are confirmed, I'm beginning to get busy with the stories. That means asking the people we're staying with some very detailed questions about houses and habits and stuff, and of course, producing the stories is, as you can imagine, quite time consuming. One thing I've tried is to scan the pictures and enter the text with  a picture editor. This saves me having to draw the letters carefully enough so that Max can actually decipher them.

So, anyhow, here's what I've got so far.  Any ideas as to how I might make it better are welcome. And please fell free to download it and put in your own text if you think that would be useful (I've used Picnic, which is free and easy to use).

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.

Orange

Blue

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...

Portraits of Autism #17

I set out to write this piece two days ago, and ended up ranting about the under-diagnosis of Asperger's sydrome in girls. So yes, I was going to write about a young girl I'd met the other day at Max's centre. She and her sister.

She is pretty, with short black curls and a thin straight nose, which together with her almond shaped eyes give her a look of a sarcophagus painting of a Greek woman I've seen at the Louvre. Her thick lashes hide cover up her side-way glances. She's dressed meticulously with white tights, black mary-jane shoes, a denim skirt, and a frilly shirt. She looks about twelve, maybe thirteen. She came in with her younger sister. The same nose, the same eyes, the same clothing. The hair is longer. I surmise that smoothing thick curly hair on an autistic child who's bound to have sensory issues may not be the mother's idea of fun.

The younger girl looks about ten. She walks in the waiting room, confidently, and guides her sister to a vacant chair next to mine. She sits her down, gently, plunks a great big black handbag on her lap and asks her to wait while she goes and looks for the teacher. The other girl sits, quietly, for a few seconds. Shyly she raises her eyes, takes in her surroundings, and decides she can't stay. She gets up to follow her sister, leaving the bag behind. Within seconds the younger girl is back to fetch the bag. She shows no sign of impatience.

There's another woman in the room. She's with a boy of 5 or so. Together they're waiting for another boy about Max's age. The small boy has very short, shaved hair. He looks like a tiny thug. He's dressed like a little man too, as some boys from more traditional families sometimes are. When the girls come back in the room the mother calls the younger one over. How old are you? she asks. Where do you live? Is your mother coming to pick you up? The girl answers dutifully, casting a frequent eye on her sister as she speaks.

The small boy is playing with a jigsaw puzzle on a table by the window. The little girl goes to stand behind him, shyly. When he struggles she tries to show him where the piece goes. I'm not sure if she wants him to finish so she can play or if she wants to be included. Either way I'm relieved she still has time to play. She's not just her sister's minder. She's still a child.

The bigger girl is seating quietly. She seems much more peaceful when she knows her sister is in the room. Occasionally she glances at me, or rather at my paraphernalia of pink electronics and writing things. The glances last a quarter of a second, but I know she's here, I know she's taking me in.

Her sister is coming back to her now. I was wrong, she wasn't waiting so she could play. She's brought the jigsaw back to her sister. She sits besides her and shows her the picture in the middle. Look, she says. There's a rabbit here. And a flower. It's pink. And look at the tree in the corner. Do you see it? Do you like it? She's keeping her voice low, even. The older sister responds, a quiet 'yes' at the end of each question. She seems torn between wanting to please her sister and staying focussed on keeping the noisy surroundings out. Her sister knows that, and her questions soon stop. The two girls sit in companionable silence until it is time to go.

Oh, one last thing. If you liked this post, would you mind terribly clicking on the RSS feed, here, or the Google connect buttons (top left)? And if you didn't like it, you might still want to look around. There's three of us, you know, so you're (almost) bound to find something you like. And then, if you've still got time, you could share this post or stumble it, or both and get in touch with your local tv station to sing our praises. We'll love you forever.

Portraits of Autism: Asperger' s pink and blue.

I haven't been to the autism education centre for a while, but when I go, I mostly see boys there. Sure, there's the occasional girl with Asperger. But even that's rare. One thing I found out recently is that Asperger is under-diagnosed in girls. What this means is that many girls suffer in silence, trying to work out what the hell is going on around them and how they're supposed to react to people and situations. They're coping with autism by themselves. This situation comes about because one of the many prejudices about autism is that it's a boy thing, that it's to do with having an extreme male brain.

I don't want to suggest that there is no truth behind any of this: more boys than girls do seem to be affected overall. But with something like Asperger, or high functioning autism, it's much harder to tell. How the symptoms manifest themselves depends very much on how a child develops. And Asperger doesn't affect the development of a child in quite the same way as classical autism does. Children with Asperger are good talkers, so they're not excluded from society as children who don't speak can be. So they get to be put into society's little boxes, just like any other child. They learn - with difficulty - the kind of behaviour that is expected of them as boys or as girls. So it's not suprising that Asperger's symptoms should manisfest themselves differently in boys and in girls. Blue Asperger for boys, and pink for girls.

But of course, the medical profession only recognizes blue Asperger's symptoms. So girls remain undiagnosed. As far as current diagnoses are concerned, there are 16 boys with Asperger's to every girl who has the condition. Dr Judith Gould, who is quoted in this Guardian article says it should be 2.5 to 1. This means that for every 16 boys who receive a diagnosis of Asperger's there are 5 or 6 girls who don't but who have the condition. One way in which the condition might manifest itself in girls when undiagnosed is through eating disorders. In any case, as women who have been diagnosed late in life, like Rachel Cohen-Rottenberg, will tell you, it's miserable, it's hard. It doesn't have to be.

Oh, one last thing. If you liked this post, would you mind terribly clicking on the RSS feed, here, or the Google connect buttons (top left)? And if you didn't like it, you might still want to look around. There's three of us, you know, so you're (almost) bound to find something you like. And then, if you've still got time, you could share this post or stumble it, or both and get in touch with your local tv station to sing our praises. We'll love you forever.

Thoughts from the treadmill

Melvin Bragg is introducing a program on Cleopatra. A woman woman with a mind like crystal and a voice to match explains why Egypt at that time wasn't unlike a modern state, full of debts. I can't focus, and my legs are heavy. What do I care if the Ptolemies slept with their brothers and sisters? I just want to go home, watch tv. I can't believe that less than a month ago, I was here, three times a week, working out like nobody's business.

Portrait of Autism #14

It's one of those days when the sun is shining through dirty window panes and the heating is on full blast everywhere. It makes me feel a little sick, and not nicely predisposed towards to the people around me. There's a lot of them today - parents, siblings, grandmothers, everyone has come out for therapy. All women today - which is unusual - and most of them covered - even more unusual.

There's a child screaming, somewhere. He was whimpering just before his class started but now he's howling - has done for fifteen minutes.

Opposite me there's a tiny boy in a pushchair. He's waiting for an older brother, but it looks as though he's on the spectrum too. He's shaking his head violently from side to side. His grandmother who encouraged him at first - maybe he's trying to say 'no'? -  is trying to stop him now, as he looks like he might hurt himself. God, that child must be hot! He's wearing woolly tights under warm trousers, and what looks like three layers of polyester on his back, plus a huge blanket for going outside that hasn't been moved off him properly. I want to get up and undress him and the only reason I don't is that I remember what it was like having strangers coming up to me in the streets, telling me my children weren't dressed warmly enough, pulling their trousers down so their ankles weren't exposed. How can something like being too hot be a cultural variable?

The mother is fussing with little plastic bags containing food and drink. I can see her think 'If I get  the right combination of drinks, and food into my boy he won't act out'. I know, I've been there.

On the other side of the room, there's another group of women sitting around the laptop, arguing over how to make it work. 'Is it plugged in?', one of them keeps asking. It turns out it's not. A teacher comes in and helps them put the plug in the hole. Now they need to decide who is going to watch their child on the webcam. Normally it's all pre-arranged, but today is chaotic.

And then, just like that, nearly everyone's gone. The only people left in the room are Charlotte and myself, and a woman and her daughter. The sun's shining a bit less too, and I'm beginning to feel more comfortable. I whip out my pad, and start to write about the weather, and the crowded waiting room. I feel this is going to be a bad-tempered post and I think it's just about okay, it will show that parenting an autistic child doesn't make you immune to pettiness and trivial peeves.

But as jot down the first paragraph, the woman at the laptop speaks to me. She's asking me if I'm French. I look at Charlotte for confirmation that I've heard right. The woman is covered, wearing a long coat as well as a headscarf - not a bright peasant outfit, but not a typical city covering either. Sort of quiet and cheerful at the same time, with a little grey fabric flower pinned on the breast of her coat. People don't normally ask me if I'm French. They assume I'm German, or American. They either speak to me in what they think is my native language, or ignore me completely. I'm a foreigner.

So I say yes. And I volunteer that my husband is English. She says something else: 'Why are you here?' I'm not sure I've understood so I turn to Charlotte again. I expect she wants to know why I'm Turkey, why I bring my son to a Turkish speaking therapy centre. It turns out she wants to know who my autistic child is, and what his diagnosis is. So I tell her. And I ask about her. She says her son is sixteen. Non-verbal. Does not communicate in anyway, just likes to sit by himself, playing electronic games. They've been coming here for four years now. Before that, they used to go to a place near their home, which is a village by the airport, a couple of hours from here. But that place wasn't any good, so now, they come here once a week. It takes them the whole day for a two hour session.

She asks me what I do with my son during the day. She asks if I work. If I've found someone to help look after him when he's not at school. She doesn't work, she has to stay at home with the boy, as he won't allow anyone else to look after him. Her husband is a mechanic for the local 'jendarm' the army run rural police. She has two other children, both daughters, both very bright. The youngest, who is here, is fascinated by Charlotte's ability to speak three languages. She's not shy about talking to us either, and, like her mother, she's understood that she needs to speak slowly, clearly, and use simple words when she addresses me.

The mother asks me what I think 'caused' the autism. I say I don't know. I hear it's partly genetic. She says: do you have any autism in your family? I say no, not that I know of. She says, me neither. We both shrug. She says: 'What can I do? I come here every week, but nothing changes, he never makes any progress.' I ask 'Is he happy?' She says 'No, except when he's by himself. Or with his sisters. He loves his sisters.' The little girl looks to Charlotte: 'Do you and your brother love each other too?' Charlotte says yes, emphatically. The two girls look in each other's eyes, and something passes between them.

Oh, one last thing. If you liked this post, would you mind terribly clicking on the RSS feed, here, or the Google connect buttons (top left)? And if you didn't like it, you might still want to look around. There's three of us, you know, so you're (almost) bound to find something you like. And then, if you've still got time, you could share this post or stumble it, or both and get in touch with your local tv station to sing our praises. We'll love you forever.

Portraits of Autism #13

Last week I asked my boy what he wanted Santa to bring him for Christmas.
He broke into a huge grin and said: 'A present!'
So I push: 'what would you like your present to be?'
He looks puzzled for a second, then he understand and the grin is back: 'A bus!'
- A bus for your playmobil?
- Yes!
- And anything else?
Now he can barely contain his joy:  'A car and a taxi too!'

This is not something we've had before. Apart from a good long period between his second and seventh birthday, where every time he walked past a sweet shop he would scream, Max has not asked for presents. His interest in receiving them has been on and off - never on for long enough to open all the gifts he would be given on a birthday or for Christmas.

So contrast last week  to my attempt at getting any kind of answer to the same question last year and his reply then: 'No! No Santa! Santa is ill! There will be no presents!' And then he covers his ears - the autistic signal for 'I don't want to be around this sort of shit, I'm in danger of freaking out big way, get me out of here now.' Ok. Santa is ill. He can't make it.

Now he was happy enough when presents were handed to him - as long as there was no Santa in sight. But after he'd opened a couple that was enough. And then, of course, there is no garantee he'd play with them - not straight-away in any case, and sometimes not for months. 


Last summer he got the idea of presents. My mother was visiting and he anticipated opening up her case and finding presents. He even stipulated that the present would be a plane. It turned out he was right - I managed to sneak in a quick phone call to her while she still had time to buy one. When his other grandmother visited, she was already in the plane when he told me she was bringing a bus. Oops. So I bought one on her behalf and that seemed to go down ok. Ish.

We've been working on his materialistic streak since July. After each session of homework, he gets a sticker. Five sticker means he can choose a small gift.  The first few times he asked for bottles of bubble mixture, the only non-edible thing he'd ever really asked for. Then it was drawing pencils. Then  in August, he got a brilliant idea. He asked for his very own water dispenser, tea-glasses and tea-spoons, so he could make himself (very watery) Turkish tea. Later that month, he dragged my husband into a toy shop. Full of apprehension they went. Max picked up a small plastic airplane that he'd spotted through the window: the cheapest thing in the shop!

Now every Sunday, after he's completed his sticker chart, we go to the toy section of the supermarket. So far he has had a dozen small airplanes and half a dozen small buses.

I don't know how to feel about his lack of imagination when it comes to gifts. He really does seem to enjoy the buses and planes. And he loves playing with his other toys as well, but just hasn't gotten around to thinking that he might like to play with other things he hasn't got. This might also be a function of the fact that he's just not exposed to that much advertising. His sister never really asks for much either. For Christmas she wants the Dr Who Annual, the Guinness Book of Records, and a couple of novels. That's it.

When I walk into a toy shop, or even a book shop, I see all these little plastic things that boys, younger than Max even, lust after. I don't know what they are, but I know they are hugely significant to little boys in terms of their social positions at school. If you don't have the latest 'thing', you know, the one with the lethal rabbit that turns into an atomic coffee cup, then you're nothing, your friends won't play with you, and you will be miserable. Max doesn't even know what these things are.  Part of me is glad that he's missing out on mindless materialism and the exposure to toy weapons. Part of me is sad that he doesn't belong in this way. On the other hand, I frequently find marbles in his pockets - that all important primary school currency. If I ask him where he got them from,  he'll give me a girl's name. Clearly some kids at the school want him to belong!

But now, finally, it seems he's understood that presents can be chosen, and asked for in advance in order to guarantee their arrival. This weekend, between finishing up the Advent Calendar and making the Christmas pudding, we are going to write our very first letter to Santa together.

Now I'll just have to figure out a way of explaining letters...

Oh, one last thing. If you liked this post, would you mind terribly clicking on the RSS feed, here, or the Google connect buttons (top left)? And if you didn't like it, you might still want to look around. There's three of us, you know, so you're (almost) bound to find something you like. And then, if you've still got time, you could share this post or stumble it, or both and get in touch with your local tv station to sing our praises. We'll love you forever.

Salad Bar Philosophy, anyone?

I was listening to woman's hour again today. It was a program I'd meant to catch on the day it came out but didn't in fact listen to for a while because my computer got virused (and all...) So I listened to the podcast here. The reason I was so keen on listening to it was that they'd announced it on twitter as being about women in philosophy. As in academic women philosophers. In actual universities, teaching in actual jobs. Why there are so few of us.

So the women interviewed were saying, surprise surprise, that it's all down to cultural stereotype. Women aren't supposed to be good at abstract reasoning, and cold stuff like logic and maths. Which is sort of what Rousseau said. And Aristotle, those pillars of the sexist bastards community.

Portraits of Autism #12

So I meant to have this posted on Monday for Speak up on November 1st!
This was a reaction to the communication shutdown advocated by an autism charity on that day, which was designed to raise awareness of autism by modelling what it feels like to unable to communicate with others. People would donate to the charity and put up a badge on their sites, shutting down virtual communication for the day. A few contrary people, like Rachel Cohen-Rottenberg who wrote the Speak up post, Varda, and Jen thought this would be a good opportunity to speak up about autism. I was definitely going to join them. Then I got virused, so went through an enforced communication shutdown. (Although I may well have sent out a few hundred thousands emails about penis enlargement...).

Anyway, as this is a Portrait of Autism post, let me take you back to the waiting room at the centre where Max gets his special education twice a week.

Portraits of Autism #11

I read this really interesting piece yesterday. It was about how autistic adults are forming communities, and how that surprised some people because, after all, aren't autistic people not very good at social relations? That's what the experts tell us: autistic people have trouble relating to others, they don't empathise very well, so by rights, they should always be isolated.

That brought in mind other things I'd read over the last few months. One expert telling a mother her child will never be potty trained because he wasn't at 8. Another one saying her child was simply dreamy, and that there was nothing to worry about. Both, of course, turned out to be wrong. And that's really what we should expect. Because it's very hard to be an expert at something no one really knows anything about. If being an expert means mastering the existing body of knowledge, then yes - there probably are experts in autism. But if it means having a clue what causes autism, knowing what will, without a doubt improve the learning abilities of a child, make him or her more comfortable with the world around, then no, there aren't any.

Of course there are lots of people with plenty of experience, who don't claim to know anything for certain, but generally have a pretty good instinct of what's going to work or not with a particular child. And if something 's not working, they usually have no problem giving up and trying something else. That is certainly the case with the teachers at Max's autism centre. Yet, they're young, and they can't have studied for more than a few years for the qualifications they need to work here. Their experience must be limited: I don't suppose most of them have worked for more than five years or so. But they work hard. Within a day, they see many children. And they work intensively. They pick up on one child's needs very quickly. They establish a relationship, not just with the child, but with the parents and the school teachers. They're not experts, they're exceptional people.

As to the psychologists, the neurologists, the child psychiatrists who claim to be experts - well, they certainly don't have that kind of experience. Nor do they have a clear grasp on what it is they're supposed to be experts about. Is autism a neurological condition, is it psychological? Does any one even know what that distinction really is about? According to us philosophers (who of course know everything!), neither the neurologists nor the psychologists really know what they are talking about, that is, they're very good at studying the bits of brains or human reactions they look at, but it's not very clear how and why they think any of that relates to what goes on in any one's mind or heart.

The psychiatrists and neurologists are also those people who, forty years ago, would have blithely recommended you put your child in an institution and forget about them - or failed to recognise their autism altogether. Autism is in many ways a newly discovered condition, and as such, it's not clear to me that any one should really constitute themselves experts. There just hasn't been time to build up a decent body of knowledge or to learn about its applications. Any study that we actually might trust and that is not built on antiquated prejudices about autism is bound to be very new. Basically, we won't know the results until another decade or so.  So when people make claims about what works and what doesn't work with autism... they're either basing them on very short studies or making confident predictions. In any case, that's no what scientific expertise is supposed to be about, so I stick to my guns: there are no autism experts.

So I'm always much more inclined to ask the advice of one of the teachers at the centre than that of an eminent sometingist who has no experience working with autistic children. And I don't think anyone should let themselves be upset by what a so-called expert says.  There are people who's business is to make you feel small in order to make themselves feel important. And you shouldn't feel small. No one spends as much time and energy on your child as you do. As far as the only expertise available to us - experience - is concerned, you are the expert. I'm certainly not saying you shouldn't pay attention to what anybody else says: there are some very good professionals with invaluable information and skills, people with experience, people who've devoted their lives to helping kids like yours. But these won't be claiming expertise. They won't be putting you down, or minimising the importance of your instinct and experience.

Oh, one last thing. If you liked this post, would you mind terribly clicking on the RSS feed, here, or the Google connect buttons (top left)? And if you didn't like it, you might still want to look around. There's three of us, you know, so you're (almost) bound to find something you like. And then, if you've still got time, you could share this post or stumble it, or both and get in touch with your local tv station to sing our praises. We'll love you forever.

Autism and multilingualism

I have a terrible toothache which won't be sorted till Monday morning when the dentist comes back to work. Marianne is buried in boxes, and Sister 3 has no internet. So I'm recycling. Hope you don't mind!

This is a guest post I wrote last spring for Multilingual Mania. I've changed it a little to reflect changes that have occurred in the months since I first wrote it. I\m still annoyed with people who assume that being trilingual is bad for Max. But as he is speaking better in all his languages, people remark on it less.