parents

"The day my son was diagnosed with Asperger's."

It’s a classic case, the psychologist says. Straight down the middle. No doubt.

Between juggling work, joint custody and the ordinary demands of motherhood, Jo Case tries to work out why her son Leo is finding it hard to fit in at school. Is it because he’s an only child? Could he be gifted? In this extract from her memoir Boomer & Me, Jo writes about the moment she received her son’s diagnosis.

It’s taken almost four months for us to get to this stage: an official diagnosis of Asperger’s Syndrome (or not) by a specialist. Mark has done the work of finding the professional: a clinical psychologist who specialises in autism spectrum disorders. Her clinic is in a little weatherboard house opposite a pub. She’s been referred by the Children’s Hospital as one of the best in the field.

There are three parts to the diagnosis. First, the psychologist talks to Mark and me about Leo while he sits in the waiting room with Dad, who is sleeping on our couch for the week. Then, Leo talks to the psychologist alone. We’ve told him – deliberately nonchalant – that we’re here for some standard tests; we don’t elaborate and he doesn’t ask any questions. He is diverted by the novelty of a day off school. Lastly, Dad takes Leo home while Mark and I hear the diagnosis.

The psychologist shares an office with an ear, nose and throat doctor. The waiting room is full of his patients, an assembly of winter coughs and crumpled tissues. There are a few toys and a chalkboard in a corner, glossy magazines on the windowsill.

ADVERTISEMENT

We talk brightly—over-brightly—while we wait, talking around the subject for Leo’s benefit.

The psychologist, Naomi, seems youngish for an expert. She wears thick rectangular-framed glasses and a long tapered cardigan. She is both warm and brisk, her manner reflecting the fact that her time is costing us a great deal of money.

She asks a series of questions about Leo. Why is he here? What are our concerns? What was he like as a baby? When did he start to talk? Did he go to childcare at all? From what age? What was he like playing with other children?

We fill in the gaps as best we can. Sometimes Mark makes observations I’ve never noticed. Is he impervious to pain? No, I say. Yes, says Mark. He’s very stoic. He often doesn’t realise he’s hurt himself until I comment on it. I’ve always thought he’s just being well behaved. At other times he’s very sensitive to pain, I say. Once he notices he’s hurt, he makes a huge fuss.

Both these things are true. Naomi notes it all down.

Does he have any sensory issues? He doesn’t like scratchy clothes, I say. He won’t wear knitted jumpers, for instance. He doesn’t like how they feel on his skin. But this seems pretty normal to me. Most kids don’t like scratchy clothes.

He doesn’t like having his hair washed, says Mark. He doesn’t like the feel of the water on his scalp. I am sceptical. I’ve never noticed such a thing. He doesn’t seem to feel the cold, I venture. I’m always having to tell him to wear jumpers or jackets, or put warm pants on. He’s always arriving underdressed at my house. Mark tells me Leo says he’s not cold, even if it’s freezing outside. Mark laughs and says I’m obsessed with Leo being cold. I laugh too. Because he’s English and went to boarding school in Scotland, Mark doesn’t feel the cold, I say. He doesn’t realise what’s appropriate for Leo.

ADVERTISEMENT

I wonder if Naomi is writing that Leo’s parents fight about stupid things like whether or not he wears enough layers.

Is Leo responsive to our feelings? Does he notice if we’re happy or sad or tired or cranky? No, says Mark. Yes, I say. I notice him respond to my moods all the time. If I’m unhappy, he’s either unhappy too, or he’s especially solicitous, trying to pull me out of it. It’s no coincidence—I sense his moods shift in parallel rhythms to mine. He’s very responsive, I say.

Does he have any obsessive interests? Well, yes. Football. Yu-Gi-Oh. Lego. Yes, he likes to talk about these interests at length. Yes, he has always had special interests. Some past ones? Thomas the Tank Engine, Care Bears. Does he have any special preferences when it comes to clothing? He used to insist on wearing a skivvy every day underneath his school shirt or T-shirt. But then again, I used to buy armloads of cheap red skivvies and let him draw on them with permanent texta. So he had Spiderman skivvies, spy skivvies, a collection of Fire X skivvies. (Fire X was a superhero he invented. I cut flames out of red fabric and handsewed them onto the leg of a pair of pants for him. They were his official Fire X pants. He was pretty fond of them, too.)

ADVERTISEMENT

Did he get agitated if he couldn’t wear his skivvies? Um, yes. I tell the story of how Leo once ran away from school because I’d punished him that morning by banning him from wearing a skivvy. He was found in the park by himself, trying to cross the creek, by another mother from the same primary school. She asked him what he was doing and he said he was going home to get a skivvy. I’d watched him walk into the school grounds. He’d waited until I disappeared before following me. Naomi hoots with laughter. ‘That’s pretty determined,’ she says. ‘It’s a great story.’

I decide I quite like her.

The deputy principal had not been amused at the time. Then again, neither was I.

And then it is Leo’s turn to talk to Naomi while we sit in the waiting room with Dad.

He comes out of the room in a great mood; he’s been regaling her with football statistics.

‘He’s very bright, isn’t he?’ she says as we duck in to collect him. Dad takes Leo home on the tram. Mark and I walk down the road to a cafe where we get take-away coffees and Mark buys some kind of gourmet sandwich. I can’t eat premade sandwiches (they go soggy, and I don’t like butter on them) so I buy a muffin for lunch. We talk about what we think the outcome will be as we hurry back to hear the verdict.

ADVERTISEMENT

I don’t think he’ll be Asperger’s; he’ll just have traits. Or he’ll be just the tiniest bit Asperger’s.

Mark thinks he will be Asperger’s, but he agrees it will be a close shave.

When we go back into the room Naomi tells us that, in her opinion, Leo definitely has Asperger’s Syndrome.

It’s a classic case, she says. Straight down the middle. No doubt.

I am shocked.

‘But what about his empathy? He has empathy. I told you he reacts to my unspoken moods.’ ‘

‘He’s very tuned in to you,’ Naomi says. ‘That can happen with Asperger’s boys, in particular, and their mothers. It’s a close bond. But he doesn’t seem to sense people’s moods in general.’

Soon, the ‘no empathy’ element of an Asperger’s diagnosis will be largely discredited. Evidence will suggest that people with Asperger’s Syndrome actually have extreme empathy—more than most people— it’s just that the triggers for it are different.

‘What about his creativity? He plays imaginatively all the time. And he writes stories.’ Naomi points out that his creative play is usually within the framework of a particular storytelling universe—like Bionicles or Yu-Gi-Oh.

‘It’s not always,’ I say. ‘He makes things up from scratch. He conjures stories out of the air.’ She asks for an example. I tell her he used to have imaginary friends. I tell her that when he was younger, we’d catch the tram home together from work and childcare and he’d say things like, Look Mum, there’s a fairy, and he’s picking that man’s nose. ‘That’s imaginative!’

ADVERTISEMENT

‘Who would start those games?’ she asks.

‘Pardon?’

‘Who would start those games? Who first came up with the idea of an imaginary friend? Was it you or him?’

‘I don’t know.’

‘Did you imagine seeing things?’

‘Of course.’

‘Do you think you might have pointed out, say, the fairies on the tram, first?’

‘I might have.’

‘It’s called scaffolding,’ she says. ‘You modelled imaginative play for him. He was joining in.’

‘Oh,’ I say. Naomi has an answer to all my questions, all the niggling doubts that made me seriously doubt the school counsellor’s diagnosis.

For every significant deviation from the classic Asperger’s Syndrome framework, Naomi has an explanation for how it’s not really a deviation at all. Something clicks in my head. For the first time, I believe this is real.

This is an edited extract from Boomer & Me by Jo Case, published by Hardie Grant Books, RRP $24.95. Available here.

Do you have a child who has been diagnosed with Asperger’s?