“I put my difficulties engaging with people down to laziness and thought I just needed to try harder”
Monday, 26 March 2018
Soon after my children had both passed the age of 10 and their mother's absence was a settled fact, the moment came when I had to tell them about their autism. Together with the person who had mentored them for the two years since Magteld died, I sat down and explained, gently, that there were some things they were good at and other things they found difficult, and that the common root of all these elements was autism. A few days later one of them recapped the conversation, telling me that both he and his brother had autism, before pausing and saying: “And what do you have, Dad?”
Their mentor and I both laughed, but it revived a question in me that I had been asking for the best part of a decade, since my older son had been diagnosed. Though lots of things have been put forward as the cause of autism, from vaccines to refrigerator mothers, everybody agrees that it doesn't strike at random. So where did my children's autism come from?
A boy runs across a lawn in a sprawling herd of boys drifting towards a school playing field. He holds his arms stiffly by his sides and traverses the grass in pursuit of one of the teachers. If you look closely you can see he is holding his shorts by his thumbs, and then you realise that he isn't wearing the shorts at all, but holding them stretched across his waist. This accounts for the sight of his butt-cheeks flickering in the sunlight as he scuttles by on his spindly legs. He reaches the teacher, stops and asks, panting: 'Sir, I couldn't find my gym shorts; am I allowed to wear these?' The teacher looks startled, gulps, then regains his composure and scowls at the boy. 'For God's sake, yes. Put them on.' The boy climbs into his shorts and runs on, alone, still confused – he is perpetually confused – but glad to have solved another of life's puzzles. So many rules, so many ways to break them: how old will he have to be before he knows them all?
It's strange to be diagnosed with autism at the age of 43. It is at once a confirmation of something you long suspected and a revelation. It changes nothing at all, apart from the entire course of your life history. It forces you to look at yourself in a different light even though you're still fundamentally the same person.
An example: a common characteristic of autistic people is what's known as stimming: the rocking movements and nervous tics and little grunts that are often deployed to quell the constant sense of discomfort. I'd never considered myself to be a stimmer, but shortly after my diagnosis I saw someone on Twitter describe how he would screw up his eyes and wince in something approximating pain after socialising, usually in a private moment such as driving home. And then I remembered the yelps that escaped from my mouth, to my wife's alarm and distress, as an awkward social encounter replayed itself in my mind with jarring intensity. The incessant drumming with my fingers; how I could spend an hour by myself in a room, throwing and catching a ball off a wall. The way I used to walk along streets fixed on my feet and the task of distributing the steps equitably: first left-right, then right-left; then right-left-left-right; right-left-left-right-left-right-right-left; right-left-left-right-left-right-right-left-left-right-right-left-right-left-left-right; and so on until either my memory hit its limit or I tripped over my own feet.
The boy holding his shorts in the anecdote is, as you've probably guessed, my eight-year-old self. As a child I was constantly told I lacked common sense. When I started at boarding school I was assigned a guide, and at break times faithfully trudged a few paces behind him wherever he went, until he stopped, turned round and asked why I was following him like a goat. 'You're my guide,' I replied with a straight face. Once I wet myself in class because there was a queue at the teacher's desk, but you weren't allowed to leave the room without asking permission, and while I stood waiting my turn my bladder gave way. Teachers berated my laziness – if I could manage Latin composition but let the contents of my pencil case go astray, it could only be because I was indolent. As a result I was consistently marked down for effort, which only deepened my confusion: if I was getting the answers right, what was the point of trying harder?
Games afternoons were mostly spent shivering on the edge of a football field, hoping nobody would be cruel enough to pass or kick the ball in my direction. My co-ordination was atrocious; I could barely throw a ball, still less catch one, and the intervention of a stick or racket just magnified the problem in the same way that children who struggled with arithmetic were destined to be bamboozled by algebra. On cross-country runs I would jog along at the back of the field with the fattest boy in the class until the other children were out of sight, at which point we would slow to a walk. Actually I didn't so much walk as shuffle, like an injured duck, my feet splayed, and stared down at my shoes as the laces unravelled (that particular problem was solved when an alert maths teacher realised I was inserting an extra twist before tying the bow).
I called this blog Autistic Dad, and not by accident. When my children were diagnosed I saw plenty of familiar traits in their behavioural idiosyncrasies. At first I saw it as a way to connect with their autism, but the more I observed, the louder the echoes became. If I play a board game with one of my sons his teddies must join in to make up the numbers, just as mine did 30 years earlier. He sets out games systematically, taking turns with his teddy bears in strict rotation, using a sheet of paper to keep score; well into my teens, I played out a snooker tournament on my parents' billiard table by myself, with 24 imaginary players in three divisions, writing down the scores and keeping a league table updated. When I finally took an interest in sport it was athletics, a sport that runs on statistics. I learned world records, European records and British records by heart. No effort was required: they simply transferred from the television screen to my head as if by osmosis. I pored over record books until I could recite not just the record and the name of the holder but the date and location of the historic event (this included the women's 200 metres, at that time held jointly by two East Germans, Marita Koch and Heike Drechsler, who had each run the record time of 21.71 seconds twice). The first time I got seriously drunk my housemates marvelled at the fact that even with my pubescent brain mired in a swamp of gin and coke, I could reel off these facts without hesitation.
Interest in sport did at least motivate me to improve my co-ordination and take up distance running as a hobby that I still pursue today. It was a slow process, and I was never going to break the concentration of a Premier League football scout, but the outright clumsiness that plagued me in childhood is largely gone. So, too, are many of the other outward signs of what I now recognise as autism. I devised all kinds of camouflaging techniques to get by. As a student I was the fastest drinker in the pub, because putting the glass to my mouth exempted me from talking to people. At work I thrived in roles where I could operate autonomously, with the minimum of interaction with other people. While most colleagues loathed the prospect of a day's court reporting, I found it blissful to spend three uninterrupted hours in a room where phones had to be switched off and all I had to do was sit taking shorthand notes, to be condensed into a report during the one-hour lunch break. The only downside was that nerve-wracking moment at the end of the session when I would have to approach the advocates for both parties, look them in the eye and ask them to spell out their names for my notebook.
You might be wondering why on earth an autistic person would try to make a living in journalism. Newsrooms have a reputation as noisy, stress-soaked places where extroverts prevail, not to mention gossips, manipulators, sociopaths and office tyrants – all things that don't generally combine well with autism. A lot of people who, like me, are propelled into journalism by literary ambitions drop out because producing good hack writing under pressure is a very different discipline, just as baking cakes for a patisserie is nothing like cooking three-course meals in a restaurant kitchen. But there are plenty of niches for quiet, industrious types with a love of structure and attention to detail. These days, as journalism has become an increasingly office-bound job, the clattering phones have been mostly silenced by email and stories are as likely to emerge from a pile of data as an off-the-record briefing, it's arguably never had more opportunities for autistic people. But for me, setting out as a cub reporter, it was a tough baptism. Telephone interviews were especially strenuous and frequently reduced me to a stuttering, shrivelling wreck. Somehow I prevailed and got a lucky break inside a year when a job came up as a district reporter with the Press Association. I worked mainly alone, from home, spent as much time as I could scribbling away in courtrooms, and no longer had the stress of colleagues overhearing my phone calls. The great thing about agency reporting was that you were valued more for your dexterity with the facts than your ability to generate stories by cultivating contacts, which was the inverse of regular reporting.
And so, after a fashion, I prevailed. But it was tough and often draining work. I was driven by a need to prove myself, to show I could fit in and deal with a regular job. I put my difficulties engaging with other people down to laziness (because doesn't everybody have to deal with unpleasant people sometimes?) and that I just needed to try harder, as they kept telling me at school. I was missing something other people had, some magic key that got them access to parties and nights out in the pub. This urge to graft the skills that others flaunted effortlessly, like clicking their fingers (something else I've never been able to do) even drove me into a brief, abortive career in stand-up comedy. If I could stand on a stage and address a roomful of people without blinking or hesitating – perhaps then, Geppetto, I would be a real boy at last! On my fifth attempt the compere tactfully informed me there was some good work to be had writing jokes for radio shows. I took the friendly hint about being a better writer than performer and retired from the stage.
One of the first benefits of a diagnosis in my forties is that I feel liberated from this manic compulsion for self-flagellation. I haven't suddenly become autistic: I was always autistic, and the diagnosis is a prism that lets me view my life differently. I don't feel ashamed of my social awkwardness, or persist in the belief that it's a deficiency that I need to fix. Instead I can look back and see that I've developed a system of quite sophisticated coping mechanisms. I can reconcile myself to the fact that some forms of interaction, like job interviews or networking events, will always be difficult and forgive myself if I don't always succeed. Instead of constantly trying to suppress or overcome my autistic traits, I can concentrate on looking for ways to accommodate them. In that sense I'm still learning. Most importantly, I finally feel I can be a good role model for my children, because experience has shown me that autism doesn't condemn you to a life spent feeling isolated, unloved and miserable. There are some things you're good at and others you find difficult; the trick is to learn to live with them.
Thursday, 5 October 2017
How can you grieve without language? It was a question we had to deal with even as we prepared to emigrate while Mageld was dying in April 2014.
We learned from the start that there was no point hiding things from the children. On the day she was diagnosed, 18 months earlier, Adam clung to her ferociously as she dropped him off at the school gates. She hadn't told him about the appointment, but he sensed an imbalance in his world. When she lost her hair to chemotherapy, Euan went through a routine of trying on her headscarves and rubbing her head when he came home in the afternoon. And when she learned the cancer was killing her, she sat down with them at the kitchen table and told them she couldn't be there for them in the future. 'But you're here now, mum,' Adam replied evenly.
When Euan started school he was assigned a play counsellor. She laid out games on the floor, gave him paper and crayons and tried to connect with him using the game as a prop. Euan scarcely responded. The language barrier, the strange surroundings and the unfamiliar routine left him emotionally paralysed. After a few weeks she delivered her report in which she said that he had little idea why he was in the Netherlands or where his mother was now. 'I asked him where she was and he said: “In the hospital”.' Yet we had made a point of taking the boys with us on every step of the journey, up to and including her death, and I couldn't recognise the description in the report with the boy who had clung to me at his mother's funeral and cried with anguish as the coffin retreated behind the curtain. Only now do I realise how Euan furled into himself in the months after Magteld died, as impenetrable as an armadillo in its shell.
To the outside world the boys seemed entirely unaffected by their mother's absence. A counsellor said to me: 'As long as they're not showing any signs of distress, don't worry.' If these words were meant to reassure me, they failed. It was inconceivable that they were unaffected by such a rupture in their lives, and the fact that they were unable to display or discuss it left me frustrated, alienated and anxious. The one time I managed to raise the subject at the dinner table Adam replied flatly: 'She died, and we don't want to talk about it any more.' Unable to tolerate my distress, Adam shut it out, sometimes literally: if he caught me sobbing he left the room and closed the door. We were like a dysfunctional version of the three monkeys: see no grief, hear no grief, speak no grief.
Three years later it remains a largely unspoken trauma, an absence of an absence. My efforts to incorporate anniversaries and memorials into our routine have fallen on stony ground. Pictures of her hang in every room, almost invisible. I feel as if I am carrying the burden of memory alone, though sometimes, if I'm lucky, I can goad them into recalling a favourite film or a place we visited together. At a castle in Sweden two years ago Adam reminded me how we had stayed in a castle with Magteld a few years earlier – a wretchedly cold, wet weekend during our last winter in Scotland that was nevertheless full of warmth and hope. A breakthrough of sorts came when Euan's carer managed to coax a few snippets of memory out of him, in the borrowed language that he uses to communicate: 'Euan is worried about his family. His mother is in the hospital. And that's how he is very very upset about his mother.' It was the first time that he expressed his feelings, even indirectly. But it was not so much a chink of light as the blur of the sun behind the clouds. Without language the grieving process is silent and turgid, like a solo pilgrimage.
Monday, 4 September 2017
A little over three years ago our family underwent a violent change in circumstances. Magteld died, at the age of 38, from breast cancer, leaving the three of us who remained bereft and bewildered. To make things even more challenging, we had just emigrated to the Netherlands. Her long-cherished dream of returning, and mine of starting a new life in her country, was twisted out of shape in the last months when she was told her cancer had returned. We had sold our house by then and it was too late to pull back, so we pressed ahead like an Atlantic rower trying to outrun a storm. Magteld lived for just seven more weeks in her native land.
I am going to close this blog shortly. Euan turned 14 earlier this year and is at the point in life where his need for privacy outweighs my need to write about his progress. But before that I want to look at what we've learned about autism in the most exacting of circumstances. We've been tested by grief, by isolation, by the barriers of language and bureaucracy, and we've survived. I sometimes even dare to think we're thriving.
Looking back I sometimes wonder what on earth we were thinking of. It was like attempting to recite the complete works of Shakespeare from memory while trekking to the South Pole on crutches. The boys had to adjust to living in a new place, with new schools where the lessons were given in their other language. The country they called home and the one they visited would swap places and remould their identities. And at the same time a day was coming when they would no longer have a mother and look for guidance and stability from a father who was grappling with his own overpowering grief. We would go from being a cross-cultural family of four to an expat family of three, and so cross not one border, but two.
How did we set about making sure that the boys were not left displaced and traumatised by this conflation of extreme events? They depended, and still depend, on routine and familiarity to orient themselves. They struggle to communicate, so how would they cope with switching language. And from my point of view the crucial thing was to find a way of recognising when they were in trouble, since both of them find it daunting and difficult to communicate their emotions. The solutions I found, and the lessons I learned in the process, will be the focus of the next few blog posts.
Sunday, 2 April 2017
Ah yes, I remember the milestones. The joy of sharing the early ones: smiling, chuckling, rolling over, crawling. Then came others that didn't go so well: listening, toilet training, talking. Talking, especially. Other parents would puff up with pride as they repeated their child's first words, followed by their first sentences, and then all the cute things they said as they experimented with language, while ours stubbornly refused to progress. Frustration gave way to anguish, stoked by false reassurances from well-meaning friends and relatives, until finally we heard the words we dreaded at first but ultimately craved: 'your son is autistic'.
When your baby is born childhood stretches ahead of you like a floodlit yellow brick road, lined with solid white milestones: here is talking, here is walking, here is hitting the swing ball in the back garden. In the distance you can make out university, the first pay cheque and the wedding where you get to make a tenderly triumphant speech. All parents find out sooner or later that this straight and narrow path is an illusion. The advantage those of us with autistic children have is that we find out much sooner. The knowledge that we will have to cut our own way through the thicket, in semi-darkness and with the ever-present danger of low-hanging branches, can be daunting and overwhelming. But once your eyes adjust it takes on the character of an adventure. And the deeper you go, the more you come to appreciate the beauty of the trees and the sense of pride, when you look back and see the path you have created. It may not be particularly straight or well paved, but it's indelibly yours, and it exists mainly because you kept hacking away.
I know people who still believe they're on the yellow brick road, even when their children are in their teens. They see David's B minus for an essay as a minor catastrophe, or go into convulsions if Lydia fails the entrance exam for Cambridge and must confront the horror of three years at Keele. I don't envy them. I pity them for being so blinded by the bright lights on the straight road that they live in constant fear that even the smallest deviation will send them over a precipice. When the reality is an uncharted forest that seems intimidating in the beginning, but through exploration becomes challenging, fascinating and rewarding.
In place of the milestones, I've created my own mudstones. Here are some of them: making it through a restaurant meal without anybody staring and tutting; eating vegetables that have been cut in the wrong shape; first phone call (age 12). And a few still in progress: tying shoelaces (age 13); losing the red mark on his forehead that comes from bashing it with his fist in frustration or excitement (I promised three years ago to take him out for cake when he achieves this one); telling me how much they miss their mum.
There was a time when I grew angry and resentful when other parents started up about their children clocking up the milestones (“He's so advanced! He was walking at 11 months.” – as if it could make the crucial difference one day in a job interview). These days I tend to nod and smile, and hope for their sake that the shock, when it comes, isn't too devastating. Most of us leave the straight path sooner or later, and it's often then that we discover the truth about ourselves. The unexamined life, as Socrates supposedly said, isn't worth living. Autism is a life of examinations, in every sense.
Saturday, 3 September 2016
The rage of the privileged is an unedifying spectacle. I suspect most parents of disabled children have been confronted by someone like Tess Stimson, who wrote in the Daily Mail recently that people with special needs should not be allowed out in public until they've learned to mimic the rest of us. The object of her ire was a young boy – in her description 'about eight or nine', though Tess, as we'll see presently, is not the most reliable of observers – who was hitting a spoon against a restaurant table. He and his family had had the sheer bad luck to be seated beside Tess and her friend. After about 40 minutes of 'mounting frustration' at having her conversation interrupted, Tess leaned over and snapped at him to stop. At which point the boy's mother, who until then had been serenely unaware of the presence of a Daily Mail columnist at the next table, found herself dragged into a depressingly familiar scenario.
'The child's mother... stormed over, incandescent,' writes Tess. '”My son is disabled”, she shouted, pushing her face aggressively into mine.' I can only speculate, but perhaps the tone of this exchange was set by Tess 'pushing her face aggressively' into the boy's a few moments earlier. The mother then goes on to point out that her son is in a wheelchair. 'I must admit I hadn't noticed the wheelchair and did feel a pang of guilt,' Tess writes.
There is perhaps no finer metaphor for privilege than this upside-down response to a child's disability. The boy's family will certainly have noticed the wheelchair, every time they have to take the long route to enter a building, or wait for the next bus because another pram or wheelchair is taking up the next space, or phone a restaurant to make sure they get an accessible table. Accommodating the wheelchair is woven into the fabric of their everyday lives. But in Tess's eyes these challenges are eclipsed by the inconvenience of listening to a spoon striking a table for 40 minutes.
Just as hunger pangs are quickly banished by snacking on chocolate, so Tess dispels her fleeting sense of guilt by bingeing on self-righteousness. 'Criticising another's offspring, however anti-social their behaviour, has become a taboo in our child-centric society,' she laments. 'Particularly if the child has 'special needs', be that anything from ADHD to a broken leg.' Or perhaps we've learned the rule that if you have a problem with the way a child is behaving you should raise it with their parents first.
We do not learn from Tess exactly what the boy's specific needs were, and she doesn't seem especially interested. What we do learn is that she has a curious, 'one size fits all' understanding of disability, as seen from the equivalence of ADHD with a broken leg. Co-opting the 'some of my best friends are black' argument, she informs us that one of her children has Type 1 diabetes and has to inject insulin at mealtimes, but proudly observes that 'never once has this led to bad behaviour in a restaurant.' Now, Tess clearly has the advantage of me in her knowledge of diabetes. My understanding is that it's a serious condition that requires rigorous management, but never before have I seen it compared to a neurological condition. Children whose whole system of thinking is fundamentally different can't be compared with those whose mood is knocked off kilter by a sugar deficiency.
Tess insists that she sympathises 'deeply with the parents of any disabled child', but the mask soon slips and she exposes herself as that most tiresome species of hypocrite, a crusader for traditional parenting. The assumptions come thick and fast, but mostly thick: modern parents are 'lazy' and let their children 'run amok' 'because it's hard work enforcing rules'. 'Enough with the the kid gloves,' she declares; 'If someone can't control their child, they should leave them at home with a babysitter.' She extols the virtues of her own parents, who brought her children up to be seen and not heard, and declares that children with disabilities 'have the right to be treated like able-bodied children and that includes being disciplined when they misbehave'. She cites the example of her own daughter, who at the age of eight 'was discreetly giving herself insulin shots out of sight beneath a restaurant tablecloth'.
This last detail is telling, I think. Tess applauds her daughter for coping with her disability, but for masking it. The disabled must not look or act disabled, is the implicit attitude. They are welcome in society on condition that they stay discreet. If they are suffering, if they are isolated or overwhelmed, they should stay home rather than burden the rest of us with it. If this is sympathy, I'd rather go without it.
In the end Tess gets her way, as the privileged always do. When her sharp reproach stuns the boy into a hurt silence, she comments: 'Sometimes a firm, sharp word from a stranger can be far more effective than yet another empty threat from an overwhelmed parent'. Yes, it's easy to bully people into silence, particularly when they lack the verbal skills to stand up for themselves. But it takes a rare degree of boorishness to crow about it in the pages of a national newspaper. For Tess picking on the vulnerable is not merely justified, it is a courageous response to the forces of political correctness. 'No wonder no one dares open their mouth any more,' she says, directly after boasting of doing exactly that to assert her privilege over a disabled boy.
Parents who have put their children through hours of therapy, tried all manner of specialist interventions and cheered every hard-won scrap of progress, are understandably upset when they are branded lazy and irresponsible by adults who can't control their sense of entitlement. I doubt if Tess gave a moment's thought to the effect of her intervention on the family she upbraided, but many parents wouldn't dare to take their children out in public for months after that kind of setback. Tess, presumably, would see this as a triumph for civilised values.
I've never sought to 'control' my children. I'm not even sure I want to know what that means. I want them to grow up to be polite, thoughtful and considerate towards others, all qualities I find wanting in Tess Stimson. They mostly behave well in public these days, as long I keep two steps ahead of any potential setbacks. But even getting to this point has involved years of painful trial and error, and at every step of the way there have been Stimsonites chasing us out of museums, glaring at us in restaurants and humiliating us in the supermarket queue. My successes have been in spite of, not because of, these people's unsolicited advice and hectoring stares. To give up would be to collude in stigmatising my own children.