The awful thing is that beauty is mysterious as well as terrible. – FYODOR DOSTOYEVSKY
‘How do I feel?’
Ben turns down the corners of his mouth and then checks the shape with his hands. His eyes thin a little and his forehead creases very slightly.
‘Um, let me see now. Do you feel puzzled? Or worried?’ I guess.
He shakes his head and asks again, ‘How do I feel?’
‘Maybe sad?’
‘Why do I feel sad?’ he asks, looking cheerful now that I’ve guessed his face correctly.
‘I don’t know, darling. Why are you sad?’
‘You tell.’
‘Well, you have to tell me, actually, because you’re the sad one,’ I explain.
‘I don’t know.’
‘Oh, you feel sad but you don’t know why. Is that it, Ben?’
‘Yes.’
‘Oh darling, come and have a cuddle.’
‘No, thank you,’ says Ben politely. He goes into my bedroom and stands in front of the mirror to practise his ‘sad’ face.
Ben finds it difficult to work out from body language, gesture and facial expressions how other people feel. Making eye contact seems to be unhelpful in interpreting others and he will often avoid it, though he doesn’t seem to find it painful as some autistic people do. He also has trouble accessing his own feelings – not just identifying or naming his emotions, but even recognising his biological and physiological states. By practising in front of the mirror, he may be trying to clarify his own feelings. I watch him surreptitiously as he hams it up. I’m so happy to see his face expressive.
When Ben was four years old, I was managing a work project that involved travel interstate. I got my colleagues to do most of the travelling, but eventually it became clear that I should really go to Sydney, Canberra and Brisbane myself. After much discussion with Robert, we agreed that I would go. I worried about Ben; I’d never left him for more than twenty-four hours before. I flew out on Tuesday morning and was back home by midnight on Friday. Ben, of course, was asleep when I arrived. The next morning when he woke, Robert got up and told him that I was home in bed and that he could run in and say hello. I knew Ben had missed me, and I was sure he would be excited and happy to have me home. I sat up in bed, arms open for a hug, as he walked into the room. He gave me a blank look and then walked into the lounge. I got up and followed him.
‘Aren’t you going to say hello?’ I asked.
‘Hello,’ he said, not looking up.
‘Don’t I get a hug?’
‘I’m reading now.’
‘Oh, yes, I see, okay.’
But it wasn’t okay for me and I stood in the shower crying. As I was dressing, I heard Robert talking to Ben, explaining to him that I was sad he hadn’t greeted me properly and that he should give me a hug. Then Ben came in and gave me a hug, before asking, ‘What are we doing today?’
The episode has stuck in my mind because it was the moment when I first felt the full force of the blank autistic look. We got lots of blank looks from Ben, starting about age two and continuing for several years. He didn’t look like that because he was angry that I had been away or as a punishment; it was just part of his repertoire at that time. Probably it struck me more this time because I’d been away and missing Ben and worrying about him missing me. The moment became emblematic. For months, I relived and grieved for that single moment when Ben walked into the bedroom and looked at me without interest or connection. Robert and I never spoke directly about it – he didn’t want to reinforce my hurt, I suppose – but I did tell Penny about it. She sat opposite me, nodding occasionally as psychologists do, and her eyes filled with tears that never fell.
‘I never thought I’d see that blank look again,’ I said at one point. Only later did I realise the implications of this comment – the suggestion that a blank face from a loved one is something I remembered from a long time ago.
I am thinking that autism is to disability what cancer is to illness. I mean that autism now has a special status – a kind of ‘oh no’ status just like cancer. The word strikes fear into people just as the word cancer does. Like talking about the Big C instead of cancer, some people refer to autism as ‘the A word’, as in ‘Don’t say the A word to the mother, she’ll freak out.’
In the way that people with cancer are told to ‘fight’ the disease, so too are parents of autistic children told to ‘fight’ autism, to rid the body and self of the autism that afflicts the child. I wonder if the parent of a child with Down syndrome or cerebral palsy would be told to work hard to eradicate the condition from their child? Or would they be expected to accept the condition and work hard instead to help their child fulfil his or her potential with the life they have been given?
Although cancer is not contagious, many people are afraid to be near someone with cancer. It is too close to death, perhaps. What is it that makes people afraid of contact with a person with autism? Difference, embarrassment, confusion? I wonder if there is something else there as well with autism, some deep recognition of the nature of the difference – that the soul of someone with autism may be a shape we don’t recognise? Perhaps there is a kind of stain of shame that attaches itself to someone with autism, like someone with cancer, a shame connected to the feeling of incurability, their supposed proximity to non-being.
‘Mum,’ asked Ben, ‘what’s the opposite of normal?’ I was about to say abnormal without thinking, when he supplied his own answer: ‘Special.’
‘Is that what the teacher at school says?’ I asked.
‘I’m not saying,’ he replied.
Some parents I know won’t describe their child as autistic in spite of a medical diagnosis. They argue that the word autism is limiting and stigmatising. They will often refuse to use the term disability or disabled as well. They may talk about their ‘child with special needs’ or even their ‘special child’. I feel uncomfortable about this. I want to be able to say that Ben is autistic and to remove the stigma from autism. Talking about ‘special needs’ can be a double-edged sword: it suggests that all other children have the same ‘normal’ and therefore appropriate needs but that our child has needs that are inappropriate or should be considered a drain on the public purse. In many areas of life, typically developing children, too, have different needs from one another. As people with disabilities have pointed out, if the world were structured differently (for example, if all technology were developed using universal design principles), then the needs of someone with a disability would not be ‘special’ at all.
When we call our child special, I think we should mean that they are special to us as all children are, as those we love are special. I don’t want to say Ben is special because of his neurological make-up. Nor do I want to idealise my son. Kamran Nazeer, an autistic writer, says: ‘When we call someone a genius, or special, or extraordinary, we mean that they are blessed with a natural faculty that we are not. They are different from us. We cannot understand them.’ This, he believes, helps us feel safe; we remove from ourselves the need to engage with someone we have labelled ‘special’.
The popularity of the ‘special’ word reminds me of the many times I have read the comment that children with autism are typically very beautiful, like angels. In my experience, most young children are attractive. I don’t believe that autistic children are any more or less physically attractive than others. But there are theories about the beauty of autistic children (though none about autistic adults, as far as I know). Doreen Virtue, author of The Care and Feeding of Indigo Children, claims they are special ‘Indigo’ children, sent ‘to mash down old systems that no longer serve us’. Although sometimes she thinks they are misdiagnosed and are in fact a new breed of ‘Crystal’ children: ‘The first thing most people notice about them … is their eyes, large, penetrating and wise beyond their years.’ They are not fully of this world, God’s little angel messengers. Others have argued that perhaps autistic children are considered beautiful because they are always staring intently and solemnly, thus creating attractive images in photos. Another theory is that autism may be caused partly by antibiotics given for ear infections, that children with small heads and narrow ear passages are more likely to get ear infections, and that we typically find smaller, more symmetrical faces attractive. Nazeer connects the notion of beauty in autistic children to our protective instincts: ‘Other people want to protect them, to care for them; it is remarkable, for example, how often even clinicians mention that autistic children have beautiful eyes.’ To me, all this physical beauty stuff is just a way of saying we construct autism as ‘other’ and therefore valorise and stigmatise, idealise and demonise.
The funny thing about me rejecting the ‘beautiful angel’ theory of autism is that Ben truly is a beautiful boy, and one who looks nothing like either of his parents! Of course, all parents think their own children are beautiful, but many other people have commented on Ben’s good looks. Because his skin is so fair, I keep him smothered with sun lotion and make him wear a hat and as a result his face is still creamy, with only four or five freckles. This and his blue eyes and pale straw hair may make him look less worldly and masculine than other boys his age. And he has small, neat features, as in the stereotype. Unlike the stereotype, however, Ben laughs a lot and photographs never seem to show him solemn, preoccupied or focused, even though he can be all of these things at times. I surprise myself by finding him most beautiful when he eats – he seems both avid and innocent in a way that touches me deeply.
‘You’re lucky he’s so good looking,’ said a friend. ‘People will be much nicer to him because of that. They’ll make more allowances at school.’
‘Maybe people will be nice because they like him,’ I replied.
‘Oh yes, of course!’
Beauty as God’s consolation prize.
There is a boy with sad almond eyes who still haunts me. He lay on the floor at the ‘special needs’ playgroup and held two plastic trucks by his face, watching them, moving them only slightly. He appeared oblivious to everyone and everything else in the room. I sat down with him and talked to him gently, saying ‘Hello’ and ‘Nice trucks’. Then I moved one of the trucks away a bit and then towards him several times, saying, ‘You want the truck.’ For a little while there was no reaction, then he sat up and became upset. He tried to lock the two trucks together, getting agitated. I reached to help him, but he didn’t want me there and he cried. His face became creased, his eyes turned down like half-moons, a strange small sound came out of his mouth and he turned his head to find his mum.
‘It’s okay,’ I said to him, ‘it’s okay,’ and backed away. He stopped his sad noises and lay back down, face towards the trucks, hand on top of them. He looked about four years old and yet his emotional competence seemed that of a six-month-old baby. It was his face that got me – such terribly confused and sad eyes in a face trying to blank out all other sensations.
There are so many of them, these sad little boys (mostly boys, only occasionally girls) whose biological challenges mean they can’t embrace the world and its people. Everything that can make childhood wonderful for other children seems to pain these boys.
Ben was never like that. He always had some connection to the outside world and its people. It was tenuous at times, but we could always reach him. His sense of humour saved him – and me perhaps – because it enabled us to tease and laugh with him, to show him we loved him and would make the world safe for him.
Well, we couldn’t, we can’t, make the world safe, but it has gradually become safer for him to step out of self-containment and into connection.
The almond-eyed boy I can’t forget was just one of six boys at the playgroup. I went along as an ‘expert’ parent volunteer, that is, someone who’d had a disabled child for a while and therefore ‘knew the ropes’. My role was to chat to the parents and then, when they went into an information session, to help look after the children. As it happened, when the presentation started, the one-year-old sibling of the almond-eyed boy was grizzling and needed to be rocked off to sleep, so I got to cuddle him instead. He cried for a few minutes and I noticed that his older brother looked up with an agonised face, but then the baby dropped off to sleep and I sat with him on my shoulder, watching the others. The boy with almond eyes lay on the floor in a posture we would normally describe as despairing. No one interrupted him. Then it was time for me to pick Ben up from school. I was glad to leave, glad to get into the sunshine, very glad to see Ben come out of class towards me in all his self-ness.
Later, though, that boy kept coming into my mind. His strangely stiff but hurt face when his mum went into the other room for the presentation. His still body as he lay on the wooden floor. His eyes – almost completely vacant except for those shafts of sadness and panic.
Later still I realised that what I felt was fear. It ran through me, past my chest, rising occasionally into my throat and then settling for a time in my gut. I don’t know if it was fear for him, and boys like him (that’s what I wanted it to be), or fear for Ben, or my own childhood fear of the world revisiting me, or some sort of primitive fear of these children as ‘the other’.
Why do we fear the strangeness of others so much?
A few years ago, Ben and I were in the Tropicana Café in Fremantle. I drank a café latte and read the newspaper. Ben ate a muffin and recited the text of his favourite book, Cat Balloon. He wandered around the café between bites, moving past people as if they were furniture, talking all the while, laughing quite often.
‘Hello, what is your name?’ asked a young man with dishevelled hair, scruffy clothes and a backpack.
Ben ignored him. ‘Cat balloon did not hear their loud cries, he and the moon danced away through the sky.’
The young man followed Ben and tried several times to engage him. Ben brushed him off as if he were a fly. The man then did a handstand and made funny sounds (the Tropicana is a café where you can do such things). He still couldn’t get Ben’s attention, so he reached out to grab Ben’s shoulders, to make him pay attention. Within seconds, Ben had retreated to my side and I had half-risen in my chair and placed my arms around him. I felt the desperation in the young man and everything in me wanted to push him away, place a barrier between him and Ben. I wanted to do this because I felt the man was disturbed in some fundamental way.
The young man put out his hand to shake mine and say hello.
‘What is his name?’ he asked.
‘His name is Ben.’
‘Hey! Hello, Ben, my name too is Benjamin.’ He had a Germanic-sounding accent.
‘I’m Rachel,’ I said. ‘Where are you from?’
‘The universe,’ he answered.
‘I wondered if your accent was German.’
‘Ben, look!’ A cartwheel. Ben glanced at him and then moved off to eat some muffin and wandered over to the other side of the café. German Ben followed him, trying to get Ben to play with him. He spoke some German to him – at least I assumed it was German. Ben continued to treat him like a bothersome object, but German Ben was insistent. He wanted very much to get a response.
Eventually I said to him, ‘He’s in a world of his own. He’s like that sometimes.’ I was getting a little annoyed with this man who was interrupting my coffee and Ben’s pleasure. I wondered if his name really was Benjamin.
‘No, no, you must not let him. I know what it is. Ben, you must talk to me,’ he said, grabbing Ben’s arm again. ‘I understand, I was brought up in a Home, I understand.’ He was passionate by then, quite distressed because Ben was not relating to him. I moved to stand between the two of them. I could see that my Ben was finally paying enough attention to this other adult to indicate that he was slightly troubled by him.
‘It’s okay,’ I said, though which Ben I was speaking to I’m not sure. ‘We’re ready to go now. Ben, put on your hat,’ I said to my Ben. He heard that and actually went to the table and put on his hat, sideways, so the neck flap was half over his eyes. German Ben tried to stop us, still quite vehement that he knew what was happening and that he could help. In the end I had to be almost rude to get out of the café and even then he followed us, talking to Ben, desperately trying to get something back. I turned and said, ‘Please just leave him alone now. Goodbye,’ picked Ben up and walked across the road.
What I think now is: how clear it is to a so-called ‘normal’ person (I still think of myself that way) when someone is different in some fundamental way, like German Ben – due to a psychiatric illness, I’d guess – or like my Ben, due to a neurological condition. And how easily the German man recognised Ben’s non-responsiveness as dangerous, how much he wanted to connect with him.
Faced with the German, I felt compassion, admiration and fear in about equal measures. And I had a sense that Ben knew that this man was not a safe or fun person to be with, in spite of the cartwheels. How did he know that? Was it coming from me or did he pick up the desperate edge?
That poor young man saw in Ben his own childhood self, damaged perhaps through neglect or abandonment or lack of mothering. He didn’t want another child to go through what he had. I notice that he didn’t know or care that he was invading Ben’s space, and mine. He wanted to save Ben, I suppose.
Everyone wants to rescue Ben.
To rescue or to deny – that seems to be our reaction to certain types of disability. What the writer Thomas Couser describes as the ‘cure or kill’ approach.
Does Ben ever feel shame because he is different or disabled? I don’t know, but I don’t think he does (yet). In her book about shame, Elspeth Probyn suggests that shame only operates after interest or enjoyment has been activated and when we care about the interest of others. So perhaps Ben isn’t connected enough with others to feel shame. Perhaps he doesn’t care enough about others’ interest in him. Probyn suggests that shame arises as a primal reaction to the possibility of love – both loving and being loved – and love’s possible incompleteness. While it is clear that Ben experiences love, perhaps he doesn’t experience the fear of its loss. Or perhaps he does feel shame but doesn’t express it in the ways we might recognise, like blushing, squirming, expressing a sense of unease and self-consciousness in front of another.
Probyn quotes Gerhardt Piers: ‘Behind the feeling of shame stands not the fear of hatred, but the fear of contempt which, on an even deeper level of the unconscious, spells fear of abandonment … death by emotional starvation.’ This may give us a hint as to why some parents of autistic children feel shame associated with their child’s diagnosis. We expect unconditional love from our young children – it can feel shameful that your child doesn’t love you in quite the way you want or expect. It may be the most important relationship of your life and you may love your child completely and unconditionally, but there is always a kind of space between him and you, a taste of the emotional starvation we all fear deeply.
I am walking downstairs in a white nightdress and no shoes. The carpet is an evil orange and black pattern. At the edge of each step are rough wooden boards covered in dust. At the bottom of the stairs I turn right. Cold air brushes the hair on my arms. When I reach the door, I pause, and for a moment I am about to go back upstairs. But I don’t. The door is ajar and I look through the crack. She sits at the table, her back to the door, the desk lamp creating a cone of light around her head. I can see her reflection in the window across the room. She is writing, hunched over her paper, head down, lips moving. I push the door open. She hears me and moves, her reflected face smudging. She turns and a skeleton face is before me – a blank skull with white bones and stones for eyes. No, not stones – mother of pearl, its clouded milk sheen glinting in the lamplight.
It’s dark. I glance at the clock – 6 a.m. Beside me, Robert is lying on his back and doing his quiet morning snores. Ben is silent, but he will wake soon. I feel chilled from the dream about my mother’s face and don’t want to sleep again, so I get out of bed quietly, pull on my tracksuit and slippers and close the bedroom door behind me. I fill up the kettle, reach for a mug and tea bag. The feeling of the dream lingers. The orange and black carpet, jagged in my memory, the cold air rushing through the house, how the front door rattled on windy days. And the memory of the doorway into my mother’s study, how I often paused there, wondering if I should interrupt her after all. My mother sat in a circle of light, writing and thinking, thinking and writing, not words, but strange symbols and numbers she called her work. As a child I knew how important that work was. You could see it was important by the way she never wanted to leave it, by the way she and my father discussed it at nights, he walking up and down in front of the empty grate, she sitting in her chair by the lamp, twisting her right hand around the left shoulder of her jumper or blouse, fiddling with the material. You could see it was special work, too, when you looked at it, because only my parents could read it. The mystery of it was its own eloquence, its own drama. I knew I shouldn’t interrupt her, but I couldn’t always prevent myself from doing so.
I could interpret my dream this morning as a reminder of my mother’s seeming inaccessibility, of her focus on her work. But there is another possible reading. Perhaps the woman in the study, the woman with the bone face and mother of pearl eyes, is actually me.
Daniela Dawes is well groomed, dressed in brown and sits neatly in her chair, with very little movement. Her daughter sits beside her, a lock of blonde hair lying over one eye. Dawes stops to think before she answers a question and then talks clearly and deliberately, without showing any emotion. The only sign that she has been through trauma, that this conversation might be traumatic for her, is the way she uses the date itself – August 4 – to stand in for the act that she performed that day, the day she killed her son.
‘I had a few major things, tragic things, happen in a very short period of time, so what happened on August 4 was really about depression, in that I was overwhelmed by what was happening in my life and I was having feelings of not being able, not wanting to be here anymore … And I had always known … that Jason would have to be with me. That is how August 4 happened.’
Jenny Brockie, the interviewer, asks, ‘Do you feel, in any way, that it [killing Jason] was justified?’
‘No, never. You cannot justify that.’ Still no sign of emotion.
I am watching a video of SBS’s Insight program called ‘Understanding Autism’, which aired in late 2006. Although the interview with Dawes and her daughter runs for only eight minutes and is completely devoid of overt expressions of emotion, it is the defining segment of the program. We are watching a woman who killed her autistic ten-year-old and then tried to kill herself. We are also watching her sixteen-year-old daughter – the child she didn’t kill.
‘And how did you feel about what happened?’ Brockie asks the daughter.
The daughter tips her head slightly towards Brockie and says, ‘The way I coped with it was by blocking out all emotion to it and I guess, in a way, I did not really, I have not really dealt with it because I don’t really have emotion about it because it is too difficult to put emotion into it.’
Daughter, like mother, is composed; it is the tightly held and frightening composure of someone who has had to face the incomprehensible. To watch them is both heart-rending and shocking, all the more so because of their lack of expression.
It is a relief when Brockie turns and asks questions of other audience members. She asks a woman with an autistic son how she feels listening to this story. This woman seems close to breakdown. She cries as she says that she thinks about her son dying almost every day, that the demands of caring for her son are destroying her family, and that she can’t get any real help. The camera pans to other faces, all shown in close-up. Some are nodding in understanding or agreement, some look concerned, some are blank. Once again, I think about the role of the blank face in autism – how painful it is when your child’s face is blank to you, how in self-protection you may end up blanking your face to your child.
This program is just one example of recent media coverage of autism. A number of common threads run through this coverage: the increased numbers of children diagnosed, the controversies over cause and treatment, the lack of funding for timely and appropriate intervention, the lack of support for families, and the stress and distress that having an autistic child places on families, particularly mothers. Underlying this last point is, I think, an unspoken assumption that it is a tragedy to have a child with autism.
Brockie asks a mother of three autistic children whether, if she had known in advance that she would have this experience of parenting, she would still have had children.
‘I would probably have held back and not had children,’ she replies.
Although at some level I understand the despair this mother must be feeling, still it is painful to hear her response. I know that for me, it would be a tragedy to lose Ben, a tragedy never to have known him. But I also know that every parent’s experience is different and that the support available is just not enough for many families.
Of course, most parents adore their children, autistic or neurotypical, but it is surely partly the message that autistic children are a burden to their parents that supports the search for a ‘cure’. Groups like Cure Autism Now and Autism Speaks (both established by parents to raise money to explain the genesis of and find a ‘cure’ for autism) are often criticised by autistic people for wanting to prevent the birth of future autistic people. Aspies for Freedom, for example, say on their website: ‘We know that autism is not a disease, and we oppose any attempts to “cure” someone of an autism spectrum condition, or any attempts to make them “normal” against their will.’
Why would you want to cure someone of being themselves?
‘I am not a puzzle, I am a person.’ These are the words on the badges distributed by the Autistic Liberation Front, a movement of individuals with autism whose goals include celebrating autism, stopping the search for a cure and defending the dignity of autistic citizens.
The slogan goes to the very core of the dilemma of parenting a child with autism. How many times have I said about Ben, ‘I don’t understand him,’ or ‘He’s so different from me,’ or ‘His mind is a mystery’? And how many times have I seen the analogy of a puzzle used in the scientific search for an ‘answer’ to autism? Our state association even uses a jigsaw puzzle as its logo.
Ben is profoundly puzzling to me at times. I suspect I am puzzling for him. But then, I am puzzling to myself also. Having a child whose experience is so different from your own, who challenges all your ideas about ‘normality’ and reality, a child whose senses appear to work differently, whose brain is differently wired – having a child like this makes you question your own assumptions, your ideas about what is and who you are.
When I read the words ‘I am not a puzzle, I am a person’ and the goals of the Autistic Liberation Front, I felt like cheering out loud. I have always felt uncomfortable about the idea that Ben can be ‘cured’, ‘recovered’ or ‘behaviourally modified’. I want him to be himself, whoever that is. But still, I do consider him a mystery. Seeking to interact with the unknown doesn’t need to involve judgement. Difference doesn’t need to imply hierarchy. Ben is a mystery to me at times, but so are other people. With Ben it’s simply that the mystery is foregrounded – our usual assumptions of shared values and ways of thinking are demonstrated to be false and so we are thrown back on the unknowability of the other.
Some time ago we spent the night in a railway cottage in the bush. Ben happily explored the property, had a late dinner with us at the local tavern and then went to sleep in the single bed in the carriage. He woke at 5 a.m. and said, ‘I don’t know where I am, it’s dark, I can’t see.’ I called out to him to go back to sleep, but he said several times, ‘I don’t know where I am,’ so I got up and climbed into bed with him. He cuddled into me, his chin against my cheek, his knees poking into my tummy.
‘I didn’t know where I was,’ he explained.
‘Yes, I know, but I’m here now, it’s okay,’ I said.
And it was okay. He felt safe again. I am often moved by the enormous power of the mother’s body. Just to lie beside him, holding him, was enough. These things feel miraculous to me. Is this so for every mother? I remember the way Ben used to cry and cry at night even when I was with him, patting him, holding him. I would breastfeed him and then he would cry as soon as I put him down or as soon as he woke. Perhaps that makes his connection to me now seem extraordinarily precious, a gift that I feared I would never receive.
It is at times like this, when physical closeness is enough, that I feel again the merging of mother and child, the sense once more that Ben came from my body and is still of my body. His beauty and his mystery are not confounding, but simply present.