Autistic Autistic Dad

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 put my difficulties engaging with people down to laziness and thought I just needed to try harder”

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.

Unspeakable

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.

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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.

Extreme displacement

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.

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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.

The final problem

There are two conversations you don't look forward to having with your children. I reckon I'm going to be having one of them with Euan quite soon. It's not because of the subject matter: that's just a fact of growing up that's been inevitable since the day he was born. The discomfort stems from recognising that I'm going to have to set the ball rolling, because there's no way he's going to.

It's not the sex talk. That's still a few years away, thankfully. This concerns that other great Freudian elephant: death. Until a few months ago I wasn't sure Euan would ever get a grasp of the idea. He was too locked away in his world of Lego and teddies to register much of an interest in the fundamental ideas of being. Also, his concept of time seemed limited to what was measurable. For the last 18 months he has had a calendar on the kitchen wall which he changes daily; he looks forward to Christmas, Hallowe'en or his next birthday; but he's never spoken in terms of years or months or even weeks.

A few weeks ago, though, at the breakfast table, he played back what must have been a dialogue from school. 'What does die mean, Euan?' he asked himself. 'Die means you're gone'. He said it quite matter-of-factly, as children often do. At around the same time a few other things had changed. His new-found obsession with Star Wars has brought guns into his life, triggering the phase that most boys go through of running about the house pretending to shoot people. He knows that when you shoot someone with your outstretched fingers, you ‘kill’ them. As a parent I don't have a problem with this, since I reason that you can't hide the nastier side of life for ever, and if children have to learn about guns and death, the fictional realm is a better place for it than the street corner. Finally, we’ve been listening to audiobooks in the car, and among them is Jacqueline Wilson's The Cat Mummy, which deals with the death of a pet and the death of a parent as engagingly and sincerely as anything I’ve found in children's fiction.

Back in that glorious time before I had children, when I still knew how I was going to bring them up, I assumed these issues would resolve themselves in the classic liberal fashion. Your children ask you questions and you answer them, without hiding the truth, but in a way they understood. But it turns out this doesn’t work with Euan, because he’s utterly incurious about the world around him. If he doesn’t understand something he ignores it. If it’s explained to him he accepts it without fear or question. But there's no way of forcing the initiative on him. This can be an advantage: he has little interest, for example, in going off-piste on the internet. But when it comes to the big questions like sex and death, it raises all kinds of dilemmas. Since I can’t wait for him to give me the signal, when do I tell him, and how, and how much? And, crucially, how will he apply this new knowledge? As I navigate between the parental polarities of protecting my children and liberating them through knowledge, autism is like a giant squid clinging to the rudder. I can’t shake it off, but somehow I have to deal with it. And perhaps my biggest fear is that when we do have that precious conversation, it’ll ask more questions of me than him.

The tangled chain

Last month I wrote about the relief we felt when we secured a place in respite care for Euan. What happened next came as something of a blow. I've thought long and hard about whether to write about this, because in many ways this was an oversight that arose from some pretty unusual circumstances and I'm loath to add to the blame heaped on people who who are so often made scapegoats for the failures of others. On the other hand, the things I learned about the workings of the care system are, I think, worth exploring.

Euan's second respite was due in the middle of February. He was due to be picked up from school on Monday afternoon by a taxi with an escort, taken back in by taxi on Tuesday morning and sent home on his usual school bus in the afternoon. On Monday afternoon, at about 3.30pm, Magteld had a phone call from school. Euan was still there, a teacher had stayed behind with him, and he was growing increasingly anxious. There was no sign of a taxi. A call to the social work department uncovered the problem: they hadn't been able to find an escort for him. Since I'd taken the car to work, Magteld had to jump in a taxi and collect Euan from school at short notice. Instead of a night's respite we had a confused and anxious child at home, and the repercussions lasted for the rest of the week.

I won't go into the details of exactly what went wrong, except to say that it was a near-unprecedented set of circumstances. We've been reassured that it's unlikely to happen again and I see no reason to doubt that. However, we also learned that around half the taxi escorts were laid off under social work budget cuts in Glasgow last year. As a result the department is now engaged in a constant fight to source escorts for every child who needs them for respite.

It might seem like the height of inefficiency to employ two people to transport one child from school to a respite centre, until you consider the alternatives. An eight-year-old child with autism can become highly anxious in a car with a stranger. If the taxi is held up in heavy traffic - or, worse, involved in an accident - the stress can quickly become unbearable. And an autistic child in the middle of a meltdown is not somebody you want to have as a passenger.

Another solution would be for the parent to escort the child, as happens at the weekend. But Euan's school is three miles from our house and the respite centre is five miles away from both, so one of us would have to spend more than an hour travelling to take him up to respite, then do the same thing early the next morning in order to get him to school. It may be a fix, but the side-effect is that it makes the concept of respite redundant.

What we have here, really, is a classic case of good intentions in one area being undermined by cutbacks in another. Most people and politicians agree that respite is a good thing. It gives the children some much-needed support and a chance to spend time with others of their own age, while easing the stress on parents. By intervening before things reach crisis point, it helps keep families together. The last one is something politicians like to be seen to be endorsing. It's also particularly important in these cost-conscious times, as children with disabilities are more likely to end up in foster or state care when families break down, with all the expenses and long-term complications that ensue.

I stress these are flaws in the system rather than the fault of any individual. If the problem was a matter of one person's competence or attitude it could be speedily dealt with. But it's more complicated than that. Euan's respite care involves no fewer than four elements: the social work department, the respite centre, the school and us as parents. The first two are actively involved in his respite care, but the other two need to be kept informed of developments. The lines of communication are weak, and when something unexpected happens the chain can quickly become tangled, bringing the whole process to a grinding halt. What we experienced last month was, hopefully, a one-off. But for as long as council departments and care providers are encouraged to scrap for a dwindling pot of money in the name of "efficiency", their best efforts will be wasted and families will continue to feel let down.

A minor milestone

The other night I had a conversation with Adam that blew my socks off. Here’s how it went.

‘Hello Adam.’

‘Hello Dad.’

‘Is mummy reading you a story?’

‘Yes.’

‘Which book is she reading?’

‘This one, it’s this one.’

‘Adam, I can’t see it. You have to tell me its name. What’s it called?’

‘The Snail and the Whale.’

It went on a bit longer, but you get the idea. What made it so noteworthy is that it’s the first time I’ve managed to talk to either of my children on the phone. Despite a few conceptual struggles – I can imagine Adam’s concentrated face as he holds the book up to the phone, not understanding that my voice and my eyes are four miles apart – he came through it pretty well. Adam is almost six and Euan is eight, so I’ve been looking forward to this moment far longer than most parents (some of whom struggle to get their children off the phone at this age), and perhaps it’s a little bit more special for that.

On Language

The public perception of autism has been transformed in the last decade or so. Even four years ago, when Euan was diagnosed, it received far less attention in the media than it does now. Representations of autism then were often restricted to Rain Man and a few exceptional individuals of the kind who used to be labelled ‘autistic savants’, such as the artist Stephen Wiltshire. Much as I admire Stephen and his work (see above), focusing on his talents doesn’t advance the cause of autistic people a great deal, because becoming a world-famous artist is only ever going to be an option for a very small number.

Lately there has been a wider focus in the media on the nature of the condition and the kind of help that autistic people need to cope in everyday life. Autism is a much more talked-about condition than it used to be, and in essence this has to be welcomed. Things have come a long way even since two years ago, when the Daily Mail published an appalling column by Carol Sarler in which she intimated that parents would be better off if they were able to abort autistic children. I’ll declare an interest here: as a freelance journalist, I work two days a week on the news website of Scottish Television. STV isn’t outstandingly good or bad in its coverage of autism, and in the media industry as a whole I genuinely feel the climate is improving.

Yet misperceptions endure, most noticeably in the language used to describe autism. It doesn’t help that this is often the subject of some debate within the ranks. For instance, the National Autistic Society advises journalists to say “a person with autism” rather than “an autistic person”. This reflects the trend for “people first” language in discussing disabilities, which is a noble sentiment, but in the context of autism I feel it is rooted in flawed logic. The phrase “autistic person” reflects a number of things, among them the quirk of English grammar that insists that adjectives precede nouns regardless of which word is deemed more significant. If you translate it into French, une personne autiste, the “people first” problem solves itself, and yet there’s no evidence that the French attitude to autism is more enlightened than ours as a consequence.

More seriously, I would argue that “person with autism” risks misrepresenting the nature of the condition. It implies that autism is an attachment, like a torn ligament or a brain tumour, which can be isolated and removed without otherwise affecting the individual, when to my mind autism is intrinsic to the person’s identity. It’s partly the reason why this blog is titled ‘Autistic Dad’. (As a working journalist, though, I recognise the need for consistent and agreed terminology, and will use it even if I privately disagree with it.)

Another flashpoint is the word ‘suffering’. One of the surest ways to raise the hackles of the autism community is to write or say that somebody “suffers from” autism or Asperger’s syndrome. I’ve read and heard two examples of this in the last fortnight alone. There are two conflicting responses here: on the one hand it’s insulting to people who get by reasonably well although they have some form of autism, and yet on the other there are autistic people who quite evidently do suffer, and we shouldn’t shy from saying so. The key point, I think, is that while they may suffer from depression, from isolation, from short attention spans or from an inability to express themselves, saying they “suffer from autism” is aggravating to people who have worked hard to overcome the more debilitating aspects of the condition. It also puts a too simplistic gloss on the way people experience autism, since a strong adherence to routine can be comforting, and even rewarding, in the right context.

And then there’s the question of whether to say “autism spectrum disorder” at all, since the word disorder is considered by some to be too negative. Here I’d come down decisively on one side of the fence. Autism might be an elusive term that covers a wide range of conditions, but “autism spectrum disorder” is a medical diagnosis. It’s not just about letting people make sense of themselves: it’s there to identify those who need therapy and intervention. Since the autism spectrum covers a wide range of both abilities and disabilities, the word disorder is essential to distinguish those children and adults who need medical assistance from those who have strong autistic traits but can cope unassisted. The urge to couch things in positive language is understandable, but we should be wary of the bleaching effect it can have on the more awkward and difficult aspects of autism.

These are not just technical points: language matters. It shapes perceptions and has a bearing on how the wider world interacts with the autistic community. In the case of autism, which can be hard to define and has been so entwined in myths and misunderstandings, it’s important to have an ongoing debate about language that reflects the changing perception of the condition. There are often good arguments on both sides and I’d welcome anyone who wants to put the opposing point of view.