Science Show

Berry Billingsley describes the behaviour of her son Harry, who has Asperger's syndrome. And Daniel Lightwing describes living with the condition.

Transcript

Daniel Lightwing: Someone said that a genius needs four things. Basically people with Asperger's automatically have three of them, and so long as they've got a high intelligence as well it's very easy for them to become a genius. I'm not saying I am but most genius people...most geniuses have Asperger's and most people with Asperger's would end up as a genius.

Robyn Williams: Daniel Lightwing who won silver at the Olympics, but not the games in Beijing. His silver was at the International Maths Olympiad and he has Asperger's syndrome, where you may be brilliant at studies but you find it very hard to read people.

Daniel Lightwing: It's like we have to learn to read faces and to understand other people's emotions. We can understand our own fine. Other people's emotions...like other people would have to go and learn maths, and we learn maths like other people would just go and learn how to study emotions. There are actually quite a lot of different expressions, much more than there are emotions because they can create all kinds of combinations of them, and you have to learn them one by one, and if there's a new one it really puts me off and I get really distressed in the situation.

Also I have to learn rules for...if someone says this, what could they really be meaning? If someone should be telling me something but they're not, what could that mean? What should I say, what shouldn't I say? If they are bored, should I stop talking? And meeting new situations of that kind happens a lot more often. That's the worst part of Asperger's. Say you want to talk to someone but they don't want to talk to you, you don't know what to say. Or they want to talk about this and you do too but you don't know how to change the conversation, all these kinds of things. It's really difficult.

When I was little it's really obvious that a smile means 'happy' but there are lots of different kinds of smiles and you have to code them one by one. Some smiles are very fake, some smiles are genuine, and some smiles are meant to be funny or whatever. And that's just one kind of facial expression, and I have to learn them all. When I first meet them, maybe I've met them three or four times, then I finally know what they mean. When I see someone's face, it's like checking through a list; are they happy? No. Are they sad? No. Are they bored? No. Are they angry? No. And if you go through that list and then nothing...it's really stressful.

Robyn Williams: What a paradox. We find maths stressful. Daniel, who's doing it at Trinity College in Cambridge finds it a snack. But reading people for him is a trial. Daniel talks about it to Jonica Newby on Catalyst next Thursday on ABC television, especially on that big one; does he prefer being Asperger's?

Daniel Lightwing: I think having Asperger's overall is a gain. The difficulties are all social, but some with Asperger's, they don't recognise the kind of social thing. It varies. Some people think that it's the most important thing, some people don't think it's important at all. The truth is, if everyone in the world, for example, had Asperger's then the world would work in a much more efficient, much safer way and it would develop very quickly. We can have our own society, it's just different to the way that people have their society because of the way that the majority of people's brains work. I think having Asperger's or not is like being left or right-handed, and when you get told that, it's no reason to be depressed because you just think in a different way to other people, and the only reason why it feels bad is that the majority of people are one way, just like the majority of people are right-handed.

Jonica Newby: And would you rather have Asperger's or not have it?

Daniel Lightwing: From my perspective, no, I'd rather have it because everyone would be afraid of suddenly waking up and finding that they couldn't think like they could before. Maybe if I didn't have it then I'd see social things as more important and I might not be willing to give them up.

Robyn Williams: Why sacrifice your brilliance for a nice social life? Such could be the choice. Daniel Lightwing at Trinity College Cambridge talks to Jonica Newby on Catalyst next Thursday on ABC1 at eight o'clock.

And now these thoughts from a mother who herself read maths and physics, at Oxford this time, and then came to live in Melbourne. Berry Billingsley and Trouble with Harry.

Berry Billingsley: On an internet page, I read that children with Asperger's syndrome don't read social clues, but that's not how it is at all. That makes it sound as if Asperger's kids are missing some kind of subtle interplay that the rest of us engage with, and they sit about wondering what's going on. And as I say, that's not it at all. It's not what they don't do, it's what they do do. My nine-year-old son Harry can stand up in the middle of a crowded assembly hall and say to the speaker on the stage, 'This is getting boring!'

As far as he and I am concerned, it's got nothing to do with social clues, it's got to do with the invisible force fields that drive most of us in one direction or another throughout our daily lives whenever another human being is anywhere near, and sometimes even when they're not. In Harry's case, those force fields don't exist. I am noticing these force fields more and more now, because I am trying to teach Harry to feel them.

I now realise that I am like a lab rat in a cage I have built for myself. If I step in front of an audience, I get a buzz in my stomach. I can feel their eyeballs sending me silent messages: are you going to be interesting? Shall we like you? I can feel them warming, and I warm back. Whereas Harry could walk in front of an audience of millions and feel no excitement.

I once tried talking about this with him to see whether what I just said is true. I said, 'When most people go out on a stage, they get a feeling a bit like the one you got when you went on the dodgems, that rush of excitement, a bit scared, a bit excited.' He looked really interested, 'Can you actually feel something? Here?' He tapped his tummy where I'd tapped mine. So there you go, no fear. But he does have feelings, he cries in movies, even cartoon movies. He understands emotions. He's sad if I'm sad. He just can't read emotions, and he especially can't read crowds.

We first wondered if something was different about Harry when, as a toddler, he started to walk away from us along the long mall of an indoor shopping centre. He'll come back, we said, knowing that there is an invisible piece of elastic between a kid and his parents, and no kid would ever venture too far. But it wasn't so. Harry wasn't going to come back. He had no elastic. He was free to walk, and keep walking. The eyes of the strangers around him had no effect. To him, it was just a big place with obstacles to move around, and he was exploring.

Harry had a lot of settling difficulties at school, in fact he never settled. He was jolly tricky from the start. I know now that this is because Harry feels no social pressure whatsoever. He understands emotions, he just can't read them. He is especially impervious to the social glares of a crowd. Until you meet a Harry and get a peek at how he thinks, you don't realise, I suggest, just how many social pressures surround you, all day, from the minute you step out of the solitude of your sleep.

For example, suppose you're in a cinema waiting for a movie, and suddenly everyone gets up and starts to go, you think, where are they going? Should I be going? Is the movie cancelled? You start walking to the exits to check where they are, and whether they're coming back. But Harry is not mindful or caring if they're coming back or not. He might be curious, but he is not hurting inside. He'll stay there and wait, until someone says that he also should go. That's why he finds places like schools so difficult to deal with. Just because everyone else leaves the classroom and goes to get changed for sport, it doesn't make Harry think that he should go, not unless someone actually tells him.

And this is also the reason why schools find Harry so difficult to deal with. You see, to Harry, people, especially when there are lots of them, are simply physical shapes. I have a science background; I don't believe in auras, sorry. But now I realise that there are force fields around people. The air is filled with nonverbal signals and they fly towards us just like radio waves. These waves are concentrated around people and create personal space. But Harry has no sense of personal space. If you are standing where he wants to be, he simply moves into you, possibly saying 'excuse me', but basically treating you a bit like a chair on wheels that needs to move. Yes, chairs, that's a good analogy. People, especially crowds of people, are like chairs. They exert no force or power on him.

The other children sit in assembly, and even if they are not listening to the teacher, they sit there anyway. Invisible forces hold them in their places. They quake at the thought of all those eyes turning to look at them. But Harry feels no pressure, so he will get up if he's bored, or go and visit the person on the stage, or walk around them. Or ask them to please talk about something else now, it's all the same to him. When I tell people this, they say, 'How refreshing, how wonderful just to be able to say what you think.' Maybe, but not for me, because I'm the embarrassed, red-faced mother that has to chase him across the hall and then even behind the speaker on the stage to get him.

All children are blunt, but Harry is more blunt than most and at an older age. In the coffee shop he spots a lady having her tea. 'Gosh, aren't you wrinkly', he tells her, 'you must be very old'. Every mum has these tales to tell but they're usually about little kids. It's never good, but most mums come through this embarrassing stage, and I am still living with it.

As I say, Harry does have emotions, and he doesn't mean to offend. He likes people, and he wants them to be happy. And he has a very expressive face, with a cheeky grin, and shiny brown eyes. When he looks at you, you melt. But he doesn't look at you often. Because Harry can't read faces, he doesn't bother to look at them. Which for the rest of us, we neurotypicals as the Asperger's sites call us, is something we find uncomfortable.

You notice this most when he's talking. He just talks. He likes me to be there, but like a listening post. He doesn't look at me. He also doesn't stop, so there's never a gap for me to say anything in response. I ask myself, Harry, are you happy to be just talking at me, or do you want to know if I'm interested? He's telling me about a computer game and he's carrying on, and on, scene by scene, detail after detail, and he's walking, because he likes to walk when he talks.

I'm standing in the kitchen, he's walking from the bathroom, past me in the kitchen, through to the sitting room around and back again. He usually walks in a circuit. He usually climbs onto pieces of furniture too, like sofas, walking across the cushions and then jumping down. And an object like a lamp stand might get a tug as he goes past, so that it rocks dangerously. But he's on a mission so he doesn't check to see if it falls.

As I stand in the kitchen, cooking, his words come and go like a badly tuned radio. I get a blast of sound as he walks past, and then his voice fades away as he walks into the sitting room, and then I hear him coming back. I'm not really listening, but I know what he's saying. He's telling me about how he hired and fired janitors to keep his amusement park clean. He loves scenario games and he loves talking about them.

But does he care if I listen? When I get a suitable moment, I get Harry's attention and ask him. I say, 'It's very hard to listen to you when you walk about when you talk non-stop. Do you want me to listen, or are you just happy talking?' He looks really surprised. 'I want you to listen.' Oh, that's good, I think. So the gap is in the visual feedback and not in the point of caring. Hopefully eye contact then is something he can learn to do.

I invent the term 'eyeball checks', telling him at the end that he needs to check my eyes at regular intervals to see if I'm interested. He's fine about this. So then I tell him he can hold someone's attention using eyeball checks. It's a kind of power. He eyeball-checks me as we walk out together to the shops. He's telling me once again about his computer game but now he is flashing me his eyeballs every few seconds. It's alarmingly effective. I find myself drawn into his monologue, listening to the saga of how he took over a fort and turned the enemy into an ally. I follow the details of the battle, and pay attention to his painstaking focus on detail; number of men, number of bags of corn traded, number of archers lost.

He's like a different boy, a boy who is reaching out to me. It's a bit scary. I feel uplifted, as if I'm finally seeing into him, as if a curtain that normally blocks him has been taken away. But at the same time, I also wonder; am I falling for my own placebo? I've told him to look and use those big brown nine-year-old eyes to 'eyeball check' me, and now that he is, I'm totally taken in by them.

Harry becomes interested in this idea of eyeballs and asks me to tell him more. I tell Harry that eyes have a power like a force field, and if someone is looking at me, it makes me feel buzzy or even uncomfortable. If I'm busy and I suddenly realise someone is looking, it gives me a fright, 'Ooh!' I say. He's fascinated. 'Does it really? Can you feel me looking at you?' He fixes me with his big brown eyes. It's just Harry of course, dear nine-year-old Harry, with the cheeky grin and the eager eyes. I feel anything but scared or threatened, and decide it's too complicated to explain, so I just say 'Oh yes, I can definitely feel you staring at me.'

So we walk down the road and he fixes me with his eyeballs every few steps, and then grins, delighted at this new power he suddenly has. 'Can you feel this?' He hides behind a bush and stares out between the twigs. Then he joins me, 'Could you feel me staring from the bush?' I've become part of a science experiment. Now I am the subject of the neurological examination. Who's the weirdo here? I think. Once again, I am the lab rat, trapped by invisible forces, now wielded by a small boy who doesn't feel them himself.

We walk past a small gang of teenagers. I avert my gaze, fixing it on the road ahead. Harry of course, eyeballs them. I can sense him staring at them. He sometimes stares by mistake but now he's doing it with gusto. I pull him round, and as soon as I can, I explain that staring eyes are a challenge.

How complicated it all is, I think. We walk down to the river, and there are swans on the water. Our Jack Russell dog sticks out her nose, fixes one with her eyes and growls at it, her hackles rising. The swan raises its wings and hisses back. The signals are loud and clear, and it seems to explain the teenagers perfectly. And Harry agrees.

I'm delighted at the success of this lesson and indeed of many other lessons we've shared together. It's great to see Harry understanding more about the neurotypical world and it's also great to see how much he's enjoying picking it all up. The scientist in him is as fascinated in how neurotypicals think as we are fascinated by him.

The one weird thing about all of this is the following question. By opening his eyes to the invisible force fields around him, will I also teach him to be a victim of them? Will he move eventually from his blissful super-thick-skinned state as he learns to detect and pay heed to the glaring eyeballs around him? Or will he remain as he is, and able to pick this up and put it down as he wills? Anyway, there's no point worrying. Neurotypicals dominate in this world, and if Harry is going to thrive here, he has to know how we think.

Robyn Williams: Those thoughts on Asperger's and Harry from Berry Billingsley, and we'll have more on that on The Science Show in a couple of week's time, and on In Conversation when Daniel Lightwing's mother talks of her experience. And, as I said, on Catalyst next with Professor Baron-Cohen's physiological explanation of its origins as an extra dosage of testosterone on the embryo in the womb. Excessive maleness.

Guests

Berry Billingsley
Author

Daniel Lightwing

Further Information

Longer version of Berry Billingsley's talk

Presenter

Robyn Williams

Producer

David Fisher

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