The nursery manager said a formal assessment of Euan could take several weeks. In the meantime we decided to blunt the sense of helplessness by consulting a private therapist. I drove to her house and watched Magteld lead Euan inside a whitewashed bungalow halfway up a hill in Glasgow’s genteel outer suburbs. When I collected them at the end of the appointment Magteld was standing in the doorway saying goodbye as Euan tugged at her hand. She walked to the car carrying a blue brochure and with a broken smile on her face. I noticed her eyes were moist. When she got into the car I saw the words Autism Spectrum Disorder on the cover of the folder. It was our first encounter with the term.
Magteld had burst into tears when the therapist pronounced, after watching Euan play for an hour, that he was almost certainly autistic. A full diagnosis would take months. We looked at each other in numb disbelief as Euan blissfully kicked his legs in the back seat.
A creeping fear overcame us. The future was an unlit pathway through a dark wood. If it took a roomful of experts to diagnose autism, how could we possibly cope with raising a child with this condition? Who would love and care for him when we were no longer there? We studied websites, scoured newspaper articles, sounded out friends whose friends had autistic children, and waded through piles of leaflets. Comfort was in short supply. At its worst it was blatant quackery, offering miracle cures in return for our life savings, the cost inflated by middle-class guilt: how will you live with yourself if you don’t lay down everything you have to banish the demons of autism?
It took another eighteen months for Euan to be diagnosed. A team of specialists observed him for three days in a nursery environment, carrying out a series of structured assessments under the cover of playing with him in a clinical version of The Truman Show. The outcome was a three-page report culminating in a pithy last paragraph that defined Euan as having what was then called ‘classic autism with learning difficulties’.
The news was handed down by two paediatricians sitting across a low circular table from us in a coldly lit clinical room. The autism diagnosis was a blow to the stomach, but at least we were ready for it. ‘Learning difficulties’, on the other hand, was a flying kick to the groin.
At home I sat on the staircase in the gloom of a January afternoon and cried silently. The diagnosis had been beyond our worst imaginings. There was light on the woodland pathway, but it brought no warmth.
Adam was born a few months before we knew about Euan’s autism. As a toddler he made eye contact, answered people who talked to him and sat at the table mashing his food with his hands, just like any other two-year-old. But as the months went by, and the shock of Euan’s diagnosis wore off, we began paying closer attention. We watched Adam sit in the middle of the floor beside a pile of toys, pick them up one by one, pass them closely in front of his eyes and put them down on the other side, working through the stack like an inspector on a production line. He would only eat if the food was served on a yellow plate. He ran up and down the garden path with his head to one side, captivated by the stroboscopic effect of the light between the fence slats.
More tellingly, his speech dried up at the age of two. Suddenly he would not utter a word to anybody other than his parents and his brother. Even well-known visitors such as his grandparents received only a hard, inquiring stare. ‘Hello, Adam, are you talking today?’ became my father’s standard greeting, to my silent irritation.
I saw the dread creep across Magteld’s face, and I can only assume she saw it on mine, too. Rather than marking the milestones of his development, like good competitive parents, we watched more and more for repetitive or unusual traits. We wondered if he might be mimicking his brother’s behaviour. Perhaps he was even traumatised by it, though he and Euan clearly had a strong bond, so much so that it sometimes seemed as if Adam understood his brother better than we did.
For a time we had convinced ourselves we were raising one neurotypical child alongside an autistic one. It was a seductive idea: one brother would grow up with a ‘normal life’, study, get married, buy a house and have a career. In retrospect it was deeply unfair on both boys to see one as the salvation of the other.
At least the path to diagnosis was more straightforward this time. We knew who to call and what to expect, and our experience deterred the experts from dismissing us as overanxious parents. Adam was diagnosed with autism at the age of three. With support, they said, he would be able to follow a regular school curriculum. But once again we had to reset the course of our family life.
What makes a successful marriage? It’s one of the few questions, along with the one about the secret of a long and healthy life, that we look to the elderly to answer. But longevity is a poor way to measure success. Supportive, enriching marriages can shrivel and burn out within a decade, while other partnerships shiver on for decades after the fire has gone out.
The boys’ diagnosis exposed the cracks in our relationship. Exactly when this happened is a fuzzy spot in my memory. I remember being on holiday in Bavaria’s Urdonautal, a former basin of the Danube that had been abandoned by the river, leaving a shallow flat-bottomed valley peppered with statues of the Virgin, and being convinced that it was the last fortnight we would spend abroad as a family. But when we got home my resolve faltered.
And so we carried on, as unhappy couples do, stamping our feet as we sank into the quicksand. I even made a brief foray into stand-up comedy, but quickly realised that whatever state our marriage was in, telling cumbersome jokes to drunken students was no way to end or fix it. Magteld never directly reproached me, because we had passed the point where we could talk honestly, but once, after one of my less successful outings, she gave me a venomous look as she was carrying a basket of washing up the stairs and said, ‘I told you it was shite.’ After half a dozen trial runs, which at least yielded an article for the magazine where I was working and a cheque for £10, I hung up the pinstriped suit for good.
The end of a relationship is rarely a clean break and usually a messy unravelling: a slow aggregation of petty differences, jealousies, regrets, diverging ambitions and acts of dishonesty, great and small. After Adam was diagnosed Magteld sought treatment for depression, and I felt lost and powerless: too weak to lift her up, too dispirited to escape being dragged down.
We separated for a week. It began when I sat across the kitchen table opposite Magteld one morning, as muted autumn sunlight streamed into the room, and told her, ‘I don’t think we should be together any more.’
She looked more resigned than surprised. Deep down I think she had been expecting this moment, but she lived as if she could put it off for ever, like death. We took a walk around the block, trudging through the carpet of yellowing leaves on the pavement. I felt regret but also relief. Though our love was exhausted, I still felt affection for her. And we needed to do the best thing for the boys.
Later in the kitchen she said, ‘I really looked up to you, you know.’ It was a shock, both the choice of words and the past tense, the way she meekly accepted the blow. She would go back to Holland with the boys, she said, while I sorted myself out. She phoned her mother, who promised to get her old bedroom ready, perhaps a little too enthusiastically. ‘Ik vind het stiekem wel gezellig,’ Diny added, meaning: I secretly think it’s quite nice.
I worked out how much money I would need to fly over every two weeks, and how I could meet the cost. I had started a new job not long before that involved working evenings and weekends and which, as my boss perceptively noted, was ‘best suited to people who are divorced’. In the long term I thought I could move to the Netherlands independently. We could be a model divorced couple, devoted both to the children and to our own, separate, happiness.
Magteld took a different view. Moving back into the bedroom she had left as a teenager was not the way she planned to return. The last thing she wanted was to be judged for flying away in pursuit of a dream only to return with her wings scorched by a failed relationship. Nor did she relish the prospect of raising two demanding children o
n her own by working in a provincial flower shop. She feared the humiliating glances, misplaced sympathy and intrusive acts of kindness from people who had never been troubled by ambition.
That we didn’t split was entirely down to Magteld’s resourcefulness and quiet determination. I was spent, ready to quit our fraying marriage to chase a mirage. She took the threads and bound them together. Her initial reply, ‘I really looked up to you’, was a stroke of genius. It sowed the first real doubt in my mind. Was our relationship really so desolate if she could still assert that? Why did I think I would be any happier outside it?
First she coaxed me back into bed from the spare room. And then, at her instigation, we began to talk. It quickly became apparent that what was missing was the verbal connection. Once we started communicating, the future came back into focus. The misty ambitions that had floated around our minds for years were welded into hard plans. We would move to Holland together, as a family. We set a deadline to leave by Euan’s tenth birthday, just over two years away. In the meantime I would start looking for work while Magteld would look up schools. We decided we would live in The Hague, near her sister, Sanneke, with good work prospects and only twelve hours away from my parents by sea.
It’s impossible to be dispassionate about the near-breakdown of your own marriage. The urge to revise history is irresistible. Many of the wounds in divorce are inflicted in the aftermath, when the differences between the two sides have become political. Similarly, when relationships survive we tend to ignore the fault lines that are always just below the surface, threatening to tear them apart. Love, left untended, will wither. What survived in our case, is the core truth: a year before Magteld was diagnosed with cancer, I told her I wasn’t in love with her any more. And she refused to accept it.
I sometimes look back to those days and wonder how events would have played out if we had stayed apart. Would she have found a new partner who loved, cherished and supported her? How would I have felt, then, about being a bit player in her last act? Would I have felt jealous or inadequate about not being required when she was most in need, or grateful to have passed on the responsibility? Would we have reconciled and begun to forge a new relationship only for cancer to crush those fragile hopes too? What if she chose to face it alone, either fearfully aloof or sustained by the warmth of true friendship? Could I have stood by and watched as her strength faded and her body crumpled? Would there still have been time to laugh, to kiss, to embrace, to wipe the tears from her cheeks? What is certain is that guilt, anguish and regret would have been unavoidable, regardless of what choice I made. I know that because I have those feelings now.
Everyone with an autistic child knows this story. You’re queuing at the supermarket checkout or waiting to be served in a restaurant or on a packed train, and your son or daughter is being driven to distraction by the noise, by the cacophony of faces, by the rattle of the carriages or the passing crockery or the squeaking trolley wheels. They pull you by the arm, scream, run up and down, screw up their faces in confusion and alarm. People start to stare and nudge each other until someone says, just loud enough for you to hear, ‘Parents these days have no control,’ eliciting a round of quiet nods.
Autism is sometimes defined as absence of empathy. What, then, is the excuse of the stranger who denounces you in the supermarket without consideration? One thing autism has taught me is that almost everyone overestimates their capacity for empathy. Paradoxically, it’s a self-serving concept: we tend to ascribe good motives to ourselves and malign ones to others, on a sliding scale. Those closest to us are more likely to be seen as trustworthy, while those who are different or unfamiliar are instinctively treated with suspicion.
Appealing to prejudice is the foundation stone of every good con trick. Consider the last time you were off sick from work. You sat at home, worried about the workload piling up in your absence, regretting the missed appointments and feeling guilty towards the colleagues who filled in for you.
Because of that you probably went back too early. Yet when someone else is absent from the office you’re more likely to wonder if they’re really that ill, and if another colleague disparages them you’ll feel your suspicions were justified. Empathy is hard work; it requires conscious, deliberate thought and a measure of self-denial. We are easily seduced by any argument that lets us off the hook. No gossip is more gleefully shared than the news that the victim of a terrible plight has brought it on themselves, because mockery is light relief while empathy is burdensome.
Autism has taught me that empathy has two stages: understanding and communication. Autistic people struggle with the second of these; everyone else – neurotypicals – tends to skim the first, preferring to ‘pick up signals’ and read ‘body language’ rather than scrutinise someone else’s feelings. The sick worker’s absence gives rise to gossip among his colleagues, which rapidly develops into a coherent narrative. Rumours, especially vicious ones, have a mimetic quality: the more they are repeated, the more freely and boldly they are expressed, the more credible they seem. Suspicion spreads like a virus, branding the waylaid colleague a notorious shirker.
This is the phenomenon known as groupthink. And autistic people don’t, in my experience, do groupthink. To me it’s one of their most distinguishing features. They don’t fall in with the collective lies and bogus virtues that can mislead a crowd. They are oblivious to the distorting prism of received opinion.
When I remember how much empathy Euan and Adam displayed towards their sick mother, I find it impossible to accept the idea that it is incompatible with autism. They winced visibly when she descended into her coughing fits, moved into her bed to comfort her at night and protected her fiercely when exhaustion or anxiety overwhelmed her. When we went to the supermarket Euan told me to buy medicine for his mother because she wasn’t well; another time he instructed me to read his bedtime story because ‘Mum’s tired’. For a boy so attached to a set daily routine, these small concessions required a huge adjustment to the order of the universe. ‘They may not know it, but their biggest superpower is them being themselves,’ Magteld wrote. ‘They play a big part in getting me through it.’
Autism didn’t destroy our marriage, but it revealed the neglected corners, the cracks in the foundations and the crumbling walls. It was also our first encounter with grief.
At first sight it may seem perverse to grieve for a child who is alive and healthy. But, as Jim Sinclair observed in his essay ‘Don’t Mourn For Us’, grief is a common reaction among parents whose children are diagnosed with autism. Working through it is part of the process of acceptance, which is why many quack therapists depend on locking parents into the grief cycle in order to persuade them that their worthless treatments will restore a child who never truly existed.
Sinclair contended that parents of autistic children grieve not for the child they have but the one they wanted. ‘It isn’t about autism, it’s about shattered expectations,’ he wrote. The inquisitive toddler, the sociable ten-year-old, the precocious teenager, the student turning up every third weekend with a sackload of washing, the young man or woman striking out on the path of job, home, car, partner. Much family tension has its origins in those moments when children deviate from this prescribed route, but for most parents the adjustments are small and gradual. Autism, by contrast, arrives early on like a ten-ton weight dropping from a clear blue sky.
At first I scolded myself for grieving. Why were we mourning a child who needed our unconditional love and attention? But all this did was trigger feelings of guilt, which compounded the grief. We had to abandon our aspirations and learn to accept Euan and Adam for themselves. It taught me a lesson I would rely on later: that grief is a healing process, a way of coming to terms with catastrophic changes that are beyond your control. Without grief we have only anger, hopelessness and despair. Grief hurts, but refusing to grieve does even worse damage.
It took time to acquire the patience our children needed. It started by acknowledging that the burden f
ell on them, not us, and our job was to guide them. Not to scorn or shun or straighten or ‘cure’ them, teach them to mask their autism or try to fit them into a different mould. They needed to be nurtured, not exorcised. However hard it felt for us, and it was sometimes grindingly hard, we constantly reminded ourselves that if we faltered, they would fall. And this was the second lesson I learned: nobody has to suffer from autism, but without the right support, autistic people can, and do, suffer terribly.
When Magteld was diagnosed with cancer, Miss Winter had warned her to be alert for peddlers of bogus cures. Magteld laughed for the first time that day and reassured the surgeon that autism had immunised her against quackery. Cancer shamans employ the same false certainties, duplicitous language and fear dressed up as hope, the same grief-farming chicanery. We understood from the start that her treatment was going to be long, painful and exhausting. We knew there would be no miracle cures; we had to embrace uncertainty. All Magteld could do was keep taking the pills and live every day as if it wasn’t her last.
Yes, there were times when it all got too much: the treadmill of treatment and sickness, the aching exhaustion, the asphyxiating fear. A high concentration of these elements would precipitate a tempestuous row. Sometimes I fled through the front door, leaving Magteld alone with her rage while I ploughed ahead blindly, not stopping until all the fury and shame and impotence had been trampled into the paving stones. It was never the respectful or the reasonable thing to do, but sometimes it felt like the only option. Then I would come to rest on a bench and await the phone call that would begin the long, chastening process of reconciliation.
All the Time We Thought We Had Page 6