‘Perhaps we have a question for Margot,’ said Julie.
Rosie had already breached our agreement by asking six questions, so I considered it reasonable to ask one of my own. I began to raise my hand, and caught Julie’s attention, but Rosie pulled it back. Julie smiled, but Liz pointed to me.
‘Most of you won’t have seen what just happened,’ she said. ‘A man in the audience put his hand up and Julie nudged Margot. I can tell you what that nudge meant: watch this guy, he may ask something weird. Because he’s…maybe, oh fuck… autistic. Am I right, Julie?’
Julie attempted a response, but it was difficult to make sense of it, and Liz continued. ‘Then the lady beside him who asked the questions before tried to shut him down. Didn’t you?’
I was expecting Rosie to respond aggressively. Instead she said, quietly, ‘You’re absolutely right. I apologise.’
‘Okay,’ said Liz, ‘I’m guessing you’re neurotypical. I know Julie is. I know Margot is. And we autistics aren’t always great with the non-verbal stuff. What we just saw was the neurotypicals using their secret language…like, “Hey, do you want to take the d-o-g for a w-a-l-k?” They used it to send a warning about one of us. To shut us down. To oppress us.’ She looked directly at me: ‘Anyway, you had a question?’
‘Correct, but what you said was so spectacular that I may have forgotten it.’ The audience laughed, but I sensed in a positive way. I remembered the question.
‘The question was for Margot, as Julie requested.’
‘You can ask Liz a question if you prefer,’ said Julie.
‘Excellent. Can I have one each?’
‘That’s fine.’
‘Margot, you said your child attends a mainstream school and has friends. Is she socially accepted?’
‘Thank you,’ said Margot. ‘And I’ve no wish to shut you down. It’s a good question, and a tough one to answer. Her friends are mainly people like her, people she’s met through therapy. It’s not ideal, and sometimes we feel they’re holding her back, but it’s a stepping stone.’
‘You didn’t answer the second part,’ said Liz. ‘About acceptance.’
‘I hadn’t finished. I’m not here with any agenda except to share my experiences in the hope that it will help others, so I’ll tell you honestly that she’s struggling. She’s far, far better than she was, but she’s not there yet and she’s having a tough time at an age when she should be having fun and…My husband and I wonder every day if we’re doing the right thing.’
She turned to Liz. ‘We know what we’re doing is traumatic for her; we know it could damage her; we know she might even end up committing suicide and we’d have to live with the fact that our decision might have been responsible. But she was three and we were her parents and we decided it would be worse if she could never speak or look after herself. Maybe you think that would be okay, and maybe it would be if the world was different. But I don’t care if you’ve got the same diagnosis—you’ve never been the same as she was and you can’t empathise. So, say whatever you like for yourself, but don’t stand up here, full of confidence with your smart words that my daughter would never have had in your perfect world, and say you speak for her.’
There was loud applause from the audience.
I expected my second question would have been forgotten: we had reached the scheduled end time and facilitators generally think that finishing with applause is more important than completing the agenda. But I was unused to having an autistic person monitoring proceedings.
Liz pointed me out again. ‘You also had a question for me. I wouldn’t like it to get lost in the chorus of sympathy for parents burdened with children like us. I’d like to ask everyone who clapped when Margot said that I couldn’t speak for another autistic person: who does speak for her? Someone with no experience of what it’s like to be different?’ She pointed to me again. ‘Your question.’
‘Are you saying there’s a clear division between autistic and neurotypical?’ I said. The second term was new to me, but I expected I would find it useful in the future. ‘The instruments for identifying autism seem to be inexact; you stated that it’s a multidimensional spectrum, so it seems simplistic to reduce it to a binary.’
‘You’re a scientist?’
‘Correct.’
‘Well, I’m the first to say that we need more science—good science that doesn’t begin with a model of autism as a disease or a disorder or a deficit. But I’m not a scientist. I’m an activist. And for me, for the fight I’m in, you’re either autistic or neurotypical. And it’s not dictated by what you score on some scale invented by neurotypicals any more than you’d use an instrument to decide if you were gay or Indigenous or a Bulldogs supporter. In the end, it’s your choice, your identity. Diagnosis is for diseases.’
‘Fuck,’ said Rosie after we had exited the hall. ‘I think we saw more drama than Laszlo and Frances did. Hey, I’m sorry I tried to shut you down. Really sorry.’
‘Totally reasonable. You were helping me keep my side of the silence agreement, even after you’d been unable to resist speaking. I should have shut you down, but I was too slow, and anyway, your questions were excellent.’
‘You sure you didn’t feel oppressed? You seemed to be supporting Liz when she beat me up. Justifiably.’
‘No, no. I was supporting her in general. What she had to say was so interesting.’
‘Like the civil-rights movement in the sixties. Which side are you on?’
‘Neither. I consider tribalism one of the worst aspects of human behaviour. A major contributor to confirmation bias, lack of innovation in public policy, war…’
‘I didn’t mean it as a question. But where are we at with Hudson?’
‘Our goal was to decide whether we should seek an autism assessment. My provisional conclusion is that he could be misdiagnosed as autistic, in which case he would be subjected to unnecessary treatment and possibly discrimination. If he is autistic, the outcome may be the same.’
‘First, do no harm.’
‘Correct. Also, analysis of the problem should precede action.’
‘We are as one. Shall we get a drink before we go home? It’s supposed to be date night.’
‘I’d scheduled the time for study.’
‘And you could ring your parents.’
‘Drink.’
As we walked to the cocktail bar I had located on the internet, I reflected that if I decided to plead the autism defence for the Genetics Lecture Outrage, Liz would be the perfect support person.
9
‘I have some good news,’ said Professor Lawrence, who had called me as I rode home from work. ‘Someone who was at your lecture wrote a piece for the student newspaper, which they refused to publish. She’s cried foul, and—’
‘Presumably it was critical of me.’
‘Hardly, or the newspaper would have eaten it up. No, it was titled something like Why Are Snowflakes Always White? and it was written by a Ghanaian woman.’
‘Beatrice?’
‘That’s the name. The one you selected as the blackest of the black. Jesus wept. Seems she doesn’t like a white person—it’s common knowledge that the complainant is the student who asked you the question—taking umbrage on her behalf. For whatever reason, she’s on your side, her article’s done the rounds anyway, and it’s now a divisive issue that won’t be solved by firing you. They’re looking for a way out and they’ll accept the autism explanation without a diagnosis. As long as you identify as being on the spectrum.’
Rosie’s call from the school was less positive.
‘Another so-called meltdown. I had to collect him and he’s clammed up. Do you want to…?’
‘You’re vastly better at interrogation. Also, I’m falling behind with study.’
‘This isn’t about interrogation; it’s about knowing his father’s there to help. Think about what you would have wanted at his age.’
The answer was ‘not to be interrogated by my parents about so
mething that happened at school which they would not understand’. If I had given that response, Rosie would have told me to ‘think harder’, so I moved directly to doing so. I time-shared my thinking with a run, followed by water for rehydration, and a pisco sour to stimulate creativity and stay in practice with cocktail-making.
What would I have wanted of my parents at Hudson’s age? Their single helpful initiative had been to enrol me in a karate class, but their motivation had not been to provide me with a lifelong fitness regime, improved co-ordination and a place to go in my early twenties when I had no other social life. Their goal was to enable me to ‘fight back’, an unrealistic scenario given the dynamics of the schoolyard, classroom and changing room.
I needed a generic answer, since the ideal responses to specific events—meltdown, complaint from school, discovery of packed lunch uneaten—were different. It came as I poured a second pisco sour and thought that, in seven years, I could be offering it to Hudson, legally if not ethically.
I would have wanted to be treated as an adult. Not to be allowed to drink pisco sours, but to be properly informed, listened to and involved in decisions affecting me.
‘You’ve been drinking alcohol. I can smell it. It’s irrational to drink alcohol.’ The intonation of the last sentence was suspiciously reminiscent of Data from Star Trek.
Hudson liked to point out examples of what he perceived as irrationality on my part. However, I was, in a traditional psychological ploy, demonstrating the opposite behaviour to that which we wanted to encourage. Hudson would rebel against his parents by becoming a teetotaller.
‘Correct,’ I said. ‘But even for irrational behaviour, there is generally a rational explanation, based on an understanding of the human psyche. Do you have a rational explanation for why you refuse to have your hair cut?’
‘That was when I was a little kid.’ Hudson pointed to his hair or possibly his brain. ‘Little kids are less rational.’
‘What about today’s incident? The principal stated that you had been given a time-out for some unspecified infraction, and that when your sentence was reduced due to good behaviour, you responded with anger.’ This was where the meltdown word had been used.
‘I wasn’t being irrational.’
‘Anger is intrinsically irrational. And it’s irrational to respond with hostility to an act of generosity.’
‘It wasn’t generosity. The time-out was supposed to be all day. Mr Warren came to check on me, and I’d finished my work because it was quiet and nobody was annoying me. I was reading, which we’re allowed to do if we’ve done all our work. But he said I had to go back to the classroom. I told him he was breaking his promise.’
‘Leading to anger and an argument?’
Hudson nodded. ‘He didn’t actually say, “I promise,” so it wasn’t an official promise, but it was a deal. In the end he let me stay.’
‘Obviously you prefer the time-out room to the classroom.’
‘Not all the time. There’s a kid in the other Year Six class who wants to go there all the time. But he’s seriously weird.’
‘In what way?’
‘All ways. He’s got autism.’
Rosie laughed when I conveyed Hudson’s explanation to her. ‘Poor old Neil the Bunny. Don’t tell me Hudson doesn’t have social skills. He pulled the meltdown so he could stay in the time-out room.’
‘If your hypothesis is true, then it wasn’t a meltdown. Meltdowns are not amenable to being pulled. It’s likely the correct term is tantrum.’
‘Or just stating his position in a way Rabbit didn’t have a good answer for.’
‘It must be incredibly difficult being a teacher. So many parallel interactions.’
‘Neil wouldn’t have had a problem if he didn’t see the timeout room as punishment. So, what are we going to do about it?’
‘I recommend forgiveness, hence no action. The behaviour was inappropriate, but the situation was complex. I doubt I would have performed any better than Rabbit.’
When I arrived at Jarman’s Gym the following evening, there was a woman (estimated age thirty-two, estimated BMI twenty-one, unconventionally attractive) waiting outside with a boy of about four. In addition to my involuntary estimate of BMI, I was in danger of developing a habit of placing interesting looking people on my racial-characteristics graph. This woman would have been somewhere between Hui and Beatrice.
To my surprise, she intercepted me and said, ‘Mr Tillman? Hudson’s father?’
‘How did you know?’
She laughed. ‘You and Hudson are peas in a pod. I’m Blanche’s mother. Allannah.’ She extended her hand and I shook it, matching the light pressure that I knew to anticipate from most females and trying to suppress the thought that we were facilitating virus transmission.
She smiled. ‘You just did something that almost nobody does. Actually, it’s something you didn’t do.’
I was thinking she was referring to my getting the handshake intensity correct and not crushing her hand, but she continued, ‘There’s a look everyone who’s met Blanche gives me, like you can’t be her mother. Because of her colour.’
‘That’s ridiculous. Blanche is albino…a person with albinism. Which do you prefer? Which does she prefer?’
‘Person with albinism. Thanks for asking. But I just wanted to thank you face-to-face for everything you did on the snow trip. Blanche had the best time.’
I knew the formula for dealing with thank-yous. ‘No problem.’ I waved my right hand upwards and over my shoulder as if flicking rhinoviruses from the back of my fingers.
‘No, no,’ she said. ‘You heard that the other kids were jealous and wanted to go snowboarding instead of skiing? Blanche said Hudson talked nonstop about it on the bus back. Sounds like their teacher had his hands full.’
‘Up to his arse in alligators.’
Allannah laughed. ‘Exactly how he put it. Gary—my husband—said to come in for a healing session or a massage anytime that works for you. As a thank-you. He was pretty unhappy that the school was going to send her home because of her vision problem, which they already knew about. We’ve spoken to the principal.’
‘Excellent. The system seemed inadequately designed for handling predictable exceptions.’
Allannah laughed again, an odd response to a serious problem that had affected her daughter. ‘Did you know that Hudson said something to Blanche about genetics?’
‘Of course. We were required to visit the principal’s office because of your complaint.’
‘Oh. I’m so sorry. It wasn’t meant to be a…complaint. Gary just thought we should mention it. Blanche says that’s what you do. Genetics.’
‘Correct. Currently I’m trying to find a cure for cancer. It’s proving extremely difficult.’
‘Well, you don’t fit my idea of the evil genius working for big pharma.’
‘I don’t work for big pharma. I’m a university professor.’
‘I’m sorry. Like I said, you don’t fit. If you ever meet my husband, please don’t mention I asked this, but…the different kinds of albinism that Hudson told Blanche about. Is there any way of telling?’
‘A simple genetic test—’
‘Is there any other way? I mean, something I could look for myself?’
‘Is there some problem with genetic testing?’
Allannah took a few seconds to reply. ‘If I got a sample, could they just do the test and let me know? They wouldn’t need to see Blanche?’
‘I can give you contact details for a laboratory, but I recommend consulting a medical specialist. The medical profession is less evidence-based than it should be, but I would trust them ahead of all alternatives.’
‘Thank you, but I guess “trust” is the word. We have to decide who to trust with our children. And we believe there are better ways. Gary’s a homeopath.’
A homeopath! Not only zero evidence, but no realistic possibility that there ever would be.
Allannah laughed. ‘That’s t
he expression that you didn’t do when I told you I was Blanche’s mother. Blanche was home-birthed and we didn’t know she had albinism until after we’d named her. My husband is very fair, so we just thought…’
‘Is she receiving treatment for her eyesight?’
‘When she was born, she was almost blind. Gary treated her and she got a lot better. I’m her mother and I saw it. So did my mum. Since then it’s settled, and I just think, what he’s doing is working, my child is all right, and that’s all that matters to me.’
‘That shouldn’t preclude—’
‘You may as well have the whole story. We don’t believe in vaccination. We’re terrible people. Anti-vaxxers.’
‘People who oppose vaccination.’ It would be interesting to know the thought process that had led to her position so I could explain the error. But the child, who I assumed was Blanche’s brother, was tugging at his mother’s arm.
‘I’d better go,’ she said. ‘I have to collect Blanche.’
‘Blanche is here?’
‘You didn’t know? The kids arranged it. Hudson spoke to his grandfather. It’s frightening, isn’t it, how they’ve got to the age when they start making their own lives.’
10
I was facing a complex problem with too much information to process and not enough to support an evidence-based decision. I had learned that this was to be expected in all situations involving human interaction.
Fortunately, I could rely on my friends: a group of people from diverse backgrounds who cared about my welfare, yet were sufficiently detached that they would not be overwhelmed by emotions. They had helped me find the perfect partner, prepare for fatherhood and save my marriage.
I prepared a schedule to contact all six of them.
I began with Claudia, Gene’s ex-wife, as we already had a meeting arranged. I had continued to seek her advice, even after the falling-out with Gene, taking advantage of her background as a clinical psychologist. She did not consider it appropriate to meet in her rooms, and we discussed psychological issues over coffee.
The Rosie Result Page 6
