Autistic Dad

Autistic Autistic Dad

2018-03-26T03:24:00.002-07:00

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

2017-10-05T02:00:00.004-07:00

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

2017-09-04T14:25:00.002-07:00

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.

Mudstones

2017-04-02T12:23:00.001-07:00

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.

The shame of it: Why do we still tolerate columnists who harass disabled children in public?

2016-09-03T13:42:00.001-07:00

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.

Ditch the bungee rope: on 'growing out' of autism

2013-01-30T15:28:00.002-08:00

A few weeks ago a study came out that appeared to make a startling claim: some children are capable of "growing out of autism". The phrase was widely used across the media and intended, presumably, to confer hope on parents sitting at home desperately trying to coax a few words, or a fleeting moment's eye contact, out of their children. It implied that there was still hope that your autistic child might one day become normal. I've always had a fancy for rewriting the Pinocchio legend in terms of autism, and these articles certainly gave me plenty of material.

On closer inspection there are a number of problems with this assertion. Firstly, as Emily Willingham points out, nowhere in the original paper in The Journal of Child Psychology and Psychiatry is the phrase "growing out of autism" actually used (though the journal's editorial does talk about 'recovery'). The scientific analysis is best left to people who, like Emily, know how to do it. I'd merely observe, from my experience as a parent, that while both my children have made good progress over the last few years, neither of them are any less autistic than they were as toddlers. And here's where we approach the real core of the issue.

Underpinning the notion of growing out of autism is an unhealthy presumption that autistic people can only make progress if we can somehow engineer them to be less autistic - to "grow out" of the condition. We want to tie them to a bungee rope and drag them back towards normality. (Having sprained an ankle the only time I tackled a bungee rope, I am only too aware of the full implications of this metaphor). Rather than valuing their abilities, we focus on their disabilities and how we can eradicate them. It's indisputably a good thing if we can teach a non-verbal autistic person to speak - or, failing that, to communicate by other means - but this doesn't mean they've become less any autistic. It simply means that they've learned a new skill.

And this is the truth about how autistic people "grow out" of autism: they don't. Autistic adults who integrate into society - and there are many who thrive - will talk about how they learned to cope. They develop strategies so they can 'pass' regular society. They learn to wear masks. Like emigrants who develop the ability to speak a second language fluently, they can be adept with their acquired skills even if they never truly resemble a native. In situations of extreme stress, or where they are forced out of their learned routine, the autism can become as debilitating as it was when they were children.

I question why this obsession with growing out of autism persists even when we have agreed to stop assuming that people "suffer" from autism. It suggests that we still have a way to go before we accept what autistic people can contribute to our society and stop viewing them, tacitly, as retarded or disadvantaged. The full name of the condition is Autism Spectrum Disorder: the focus of the treatment should surely focus on the last word of that phrase. There are plenty of examples of people who are on the autistic spectrum and lead an orderly life. They should be celebrated not because they have grown out of their autism, but because they have grown into it.

The hardest thing to say

2012-10-20T08:29:00.000-07:00

Seven weeks ago Magteld was diagnosed with breast cancer. It was a shock that ruptured the fabric of our family all over again. The first examinations indicated a fibroademona, but she was given a hospital appointment just to make sure. The day of diagnosis was my birthday. We would go to the appointment, then head out for lunch to celebrate the lifting of the shroud of fear from our shoulders.

And then two women we’d never seen before came into the consultation room and delivered the devastating news. They were a cancer surgeon and a breast care nurse, and the tumour was anything but benign. At that moment the future disintegrated.

The surgeon warned us, among other things, to be wary of people peddling miracle cures on the internet. We smiled wearily and explained that we were already well aware of that pitfall because of the children’s autism. Nevertheless, one of the first dilemmas we faced was how to break the news to the children. There were books available on how to explain cancer to children of various ages, but not ones with communication difficulties. How would we know if the message had got through to them, and how would they respond?

When Magteld took to bed after the first round of chemotherapy the boys seemed unaffected at first. As long as someone was making the sandwiches all was well. We put a huge emphasis on maintaining as much of the old routine as possible. But this could only work up to a point. Magteld had to cancel a trip to Hamleys one Saturday because she was too tired to take the boys into town. We knew that if we couldn’t explain these unscheduled setbacks properly, we would only be storing up more trouble for ourselves.

I first tried explaining it to Adam as we walked to school. I told him mummy was very sick and would sometimes be tired, but he could help her by not disturbing her and doing things by himself like getting dressed for school.

As the weeks went by he became more difficult and agitated. His top lip went raw from his nervous habit of sucking it down into his mouth. In turn I grew irritated with him for being disruptive while his mother was lying in bed feeling wretched.

One morning he told Magteld not to bring him to school because she was sore. A little detective work by her brought out the revelation that he saw her as a different mummy. It was only then that I realised that he was rebelling against the cancer rather than his parents. He hated the fact that his mother was sick. He wanted her to be the strong person who was always able to pick him up. And so every time one of us mentioned her illness he would froth with anxiety. He was agitated and confused, like a fly trying to escape a room through a shut window. She explained to him that she was very sick but was taking medicine to get better. The change of emphasis, from illness to recovery, began to settle him. It became the backbone of our discussions about cancer.

With Euan acceptance was more gradual. I expected him to understand that his mum was seriously ill, but how would he deal with it? His school found some materials about cancer and I discovered a series of superhero comics about serious diseases that tied in neatly with his Batman obsession. But for a while he seemed to showed no interest in either the comics or his mum’s state.

Euan often responds better to sensory clues than verbal information, and so it proved here. The turning point came when Magteld’s hair started to fall out. Every night when he came home from school he would her take her hat off and rub her head. One night Euan came up to me one supper time and said ‘Mum’s not well’. It was hard to hear from him, but it was also a good sign that the message was filtering through.

The other day he asked her if her hair would come back when she was better. Euan rarely asks questions, so I took his curiosity as a sign that he was moving towards acceptance. Then he asked: ‘In April, when Mum’s better, can we go to Hamleys?’ The aborted trip had gained a kind of totemic status in his mind, a yardstick of his mother’s sickness. And perhaps perversely, it became the conduit for reassurance: the cancer was no longer a vast, shapeless threat that made his parents sad and angry, but the thing that had stopped him going to the toy shop. The promise of a deferred visit once the treatment was over reassured him on two fronts: he could concentrate on his mum getting better, and the disruption to his routine had a measurable end-date.

Then came the final breakthrough. The next day Euan took out his diary, where he plots the upcoming events in his life - birthdays, school holidays and respite dates – turned to April 1 and wrote: ‘Mummy get better.’ And under the following Saturday he wrote: ‘Go to Hamleys’.

The hardest thing to say has not been that Mummy has cancer, but that Mummy will take a long time to get better. Sickness in a child’s mind is meant to be a fleeting thing. Slowly they are coming to understand that it’s a process that will still be going on long after Christmas. It would, of course, have been a different story if her cancer had been more advanced, but those kinds of hypothetical worries are for adults, not children. The main lesson I’ve learned in these first weeks has been not to add to their burden by heaping all our adult fears about cancer on top of their own.

Euan asked me another question just before he opened his diary: ‘In April, when Mummy’s better, will everybody be happy?’ Answering that, I reckon, will involve a bit more fieldwork.

Do not adjust your set

2012-05-13T16:14:00.000-07:00

Autism today has reached epidemic proportions. I don't mean in real life. There are complicated but sound reasons why the rate of diagnosis has increased. But there is one place which suddenly seems to be teeming with autistic people: the television.

We have become used to seeing autism on the cinema screen in the 25 years since Dustin Hoffman donned an ill-fitting suit to play Raymond Babbitt. Rain Man takes a lot of flak these days, some of it deserved, but the problem was not so much the film itself as the fact that for many years it was the only reference point available. People assumed that all autistics were like Raymond - that is, limited verbal ability, highly rigid, fixed on routine and given to intense fits of anxiety. If you didn't comply with that formula, you weren't 'really autistic'.

Nowadays it seems no serious TV drama is complete without a character who is either autistic or displays pronounced autistic traits. Sherlock. Lisbeth Salander. The surgeon in Holby City. Tireless, single-minded, highly focused individuals whose minds are so innately fascinating that they can dispense with trivial things such as friendship. ‘Oh God, what is it like in your funny little brains?’ wails Sherlock at one point. ‘It must be so boring!’ The latest such lead is Saga Noren in The Bridge, summed up by one critic as “a woman endowed with all the logical brilliance of Mr Spock but with even fewer people skills”. On reading this I realised why these characters were starting to disturb me. It’s the consolation of genius writ large: the myth of the ‘contented autistic’ who never feels sad or lonely and whose behavioural quirks are endearing, or empowering, rather than isolating. Most autistic people I know value the company of others, even if they find it hard work, and dislike people assuming they prefer Garbo-like brooding solitude to a night in the pub.

It is crime drama, a genre traditionally brimming with flawed geniuses, that seems to have jumped on the autism bandwagon with greatest enthusiasm. Autism has taken over from heavy drinking and divorce as a metaphor for unconventional, misunderstood brilliance, but without the failings implied by broken marriages and withering livers. Which brings me on to a wider problem about autism in fiction: a fully-fledged autistic character is a hugely difficult thing to achieve. One of the perplexing things about autism in real life is that the more you learn about it, the less you seem to know: as the cliché goes, once you’ve met one autistic person, you know one autistic person. Yet characters in fiction, even the best ones, are necessarily incomplete. We see them for a couple of hours, in a context where their personality is in service to things like the plot. Hans Rosenfeldt, head writer of The Bridge, has said of Saga Noren: “We never diagnosed her, but we got a lot of positive response from the Asperger community. They really, really liked her because we showed her as functional and great at her job, even though she was a little strange.” Which is nice, but in terms of exploring the complexities of autism does it really take us any further than Rain Man?

Perhaps the most fertile territory, then, for an autistic character to flourish is a soap opera. The closest we have is Coronation Street’s Roy Cropper, whose development over the last decade says much about how autism has evolved in television drama. Initially Roy was a cardboard cutout 'lone psycho' character who was meant to last a few weeks before departing in ignominy, probably after garrotting his neighbour's cat. Having dodged that particular bullet he hung around in the background for a few years, doing little other than making people feel uneasy, until one of the screenwriters decided to reshuffle the pack. Roy's obsessive traits were made endearingly quirky rather than frightening, fans warmed to him and in time he was rewarded with that soap-opera badge of honour: a partner. Though Roy’s evolution reflects well on the show, even today the words autism and Asperger’s go unspoken in the Corrieverse. He hasn’t been diagnosed, and I can’t be alone in having conflicting views about whether it would be a good thing if he was.

Seeing autistic characters on the screen, doing admirable things in lead roles, has undoubtedly raised awareness of the condition, and that has to be a good thing. I wonder, though, how far it has raised understanding. When Louis Theroux broadcast his documentary ‘Tough Love’, about families raising autistic teenagers and young adults, I was mildly shocked to see how many people on Twitter expressed sympathy for the parents. I long ago passed the point of feeling like someone who needs or deserves anyone’s pity: my children are the way they are, sometimes brilliant, sometimes tear-your-hair-out frustrating, sometimes terrifying, but always lovable. But perhaps this reflects the gap that still needs to be closed between the brilliant, self-contained autistics on screen and the autistic person living in your street. I can’t speak for every one of them, but if I had to guess I’d say they want to be understood far more than they want to be admired.

Out of their depth: What the Metropolitan Police should learn from the case of the autistic boy in the swimming pool

2012-03-15T12:41:00.014-07:00

It is a matter of immense regret that Bernard Hogan-Howe, the commissioner of the Metropolitan Police, is seeking leave to appeal in the case of ZH, the autistic boy who was restrained, placed in leg irons and put into a police van, confused, dripping wet and terrified, after diving into a swimming pool in north London. This case ought to be a turning point in the way the police deal with autism and disability, one that ultimately benefits all concerned. Its lessons are plain to see, but sadly Hogan-Howe’s preferred course of action is to bury his head in the sand.

The commissioner seems personally slighted that ZH’s family were awarded the fairly modest sum of £28,250 for this ordeal: of this, £750 covered loss of liberty and pain and distress during the 40 minutes he spent bound hand and foot in a police van. Hardly a ruinous amount. The greatest share, £12,500, was for the exacerbation of ZH’s other condition, epilepsy.

A folk version of this story has grown up since the judgment was handed down suggesting that the police are the victims in this case. They were, after all, dealing with a 16-year-old boy who was fully clothed, unable to swim, and a danger to himself and other pool users. Almost all of this narrative, however, is flatly contradicted by the facts of the case as set out in the judgment. I accept, by the way, that the police officers who responded to the call were not negligent or careless in the exercise of their duty. They were simply out of their depth. This, though, is precisely the problem that Hogan-Howe fails to grasp.

ZH - or Josh, as he was called by the family’s solicitor - was at the pool with a group from his special needs school. Five children and five staff were on the trip, which was designed to familiarise them with the pool environment as preparation for learning to swim. However, there were no plans to go swimming and so the children were in their day clothes.

The lifeguards became concerned when Josh became fixated on the water and refused to leave the poolside. His carers were trying to lure him away with the promise of food and bananas. The carers had told the lifeguards that ‘if you touch him, he will jump in’ and advised them to give him time to step away. One manager called the police and told them there was a boy who was ‘getting aggressive’. In point of fact he wasn't. This was the first mistake and one which coloured the police’s response.

When the first two police officers arrived Josh was not in the pool. He had spent the previous 40 minutes standing by the edge and gazing into the water. There was no sign he wanted to dive in, but there were fears he might fall. One of the police officers consulted the carers about the nature of Josh’s disability. Unfortunately, it was at this point that her colleague went up to Josh, introduced herself and tapped him on the back. This was the second mistake. As predicted, Josh plunged in.

The point where he jumped into the water was near the place where the shallow end slopes away into the deep end. The water here came up to his chest. Josh at first showed no signs of distress and splashed about playfully. There was, though, legitimate concern because of his poor sense of danger. He began wading towards the deep end. By this time three more police officers had arrived. None of them, according to the court, consulted the carers on what course of action to take. Communication between the police and the people best qualified to advise them was now non-existent. This was the third and, I would argue, the most grievous mistake.

Three lifeguards jumped in at the deep end. One took Josh’s jacket off and together they ushered him back to the shallow end. Josh was no longer in danger - the water here was beneath his waist level and he was surrounded by police officers and lifeguards. It should have been an easy matter, if perhaps a time-consuming one, to lead him out of the water, with the support of his carers. Instead the police, who were by now not speaking with the carers, unilaterally chose to physically restrain him. This was the fourth mistake, and the one that escalated a bad situation into a disaster.

What’s aggravating about this episode is that the top brass at the Metropolitan Police seem wholly unwilling to learn the lessons of that day. The court recognised that the officers did not act out of malice or brutality; otherwise they would been hit with punitive damages. Rather, as a telling sentence from paragraph 129 puts it, ‘They were simply caught up in a process which they had started, continued to be involved in and felt unable to stop or control.’

The response of the police officers in Josh’s situation was clouded by ignorance. Their training was wholly inadequate for the situation they faced. They made little attempt to consult Josh’s carers on how best to handle him or what the precise nature of his disability was. They were not helped by the swimming pool manager who told them Josh was being aggressive when in fact he wasn’t. Every decision the officers took aggravated a situation which, right up until its final stages, could have been resolved with no great trauma. The carers must share some of the blame for not supervising Josh more closely and failing to intervene. But the essential problem was that the police opted for a procedure - emergency physical restraint - designed to deal with aggressive and threatening individuals, not disabled teenagers standing in the shallow end of a swimming pool.

A little liaison with Josh’s carers at any of at least three stages could have prevented an entirely avoidable outcome. The police at the swimming pool felt they had no alternative but to restrain Josh and throw him, in his wet clothes, into the back of a van. That is a dreadful reflection on the level of training they receive on dealing with disabled people. But far worse is the Met commissioner's dismissal of the need to improve on it. If the Met need lessons in dealing with autistic people, they need only pick up the phone to their colleagues in Scotland, where autism-related training, has been devised in collaboration with the National Autistic Society.

The phrase ‘institutional racism’ has been much abused since it was coined in the Macpherson report. It was devised in recognition of the fact that tackling racism was not simply a matter of changing the attitudes of individual officers. Often the problem was that the systems and procedures used by the police were inherently discriminatory, regardless of the officer’s intentions. The ZH case has exposed a similar problem with the treatment of people with disabilities, especially a disability such as autism, which varies widely and is often invisible.

It took a violent death for the police to face up to the problem of institutional racism and learn the necessary lessons. We can only hope that they can tackle the institutional ignorance of disabled people’s needs at an earlier stage. As the last paragraph of the judgment states: ‘The case highlights the need for there to be an awareness of the disability of autism within the public services. It is to be hoped that this sad case will help bring that about.’ As long as Bernard Hogan-Howe keeps his head in the sand, however, those hopes will be forlorn.

The final problem

2012-03-13T10:10:00.009-07:00

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

2012-02-27T13:44:00.003-08:00

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.

Recovery: a conflicted position

2012-02-13T14:33:00.000-08:00

My eye was caught last week by a story that claimed some children with autism 'recover' as they grow up. It was based on a study that found that about a third of people who were diagnosed in childhood later lost the diagnosis and, according to the report, were 'no longer considered autistic'. It added that it was unclear whether this was due to a 'mistaken first diagnosis or actual changes taking place in their brains'.

The contention that people can 'recover' from autism is problematic. In the first place it is drawn from the idea that autism is an affliction that needs to be cured, which many autistic people reject. Of course some autistic people really do suffer because of their autism, whether from extreme loneliness, uncontrollable anxiety or the hazards that arise from a poorly developed sense of danger. Nobody would wish to deny these people and their carers the hope that something might one day come along to make their lives easier.

When my children were first diagnosed, I fervently hoped their conditions would improve to the point where they were able to live independently, hold down careers and experience all the pleasures (and trials) that relationships bring. And yet I feel profoundly uneasy when the word 'recovery' enters the discussion. It seems too black and white, implying a clear divide between 'autistic' and 'non-autistic' when the distinction is much more opaque. It restricts people's understanding of autism to the visible signs, which is at odds with the fact that autism is largely a hidden disability.

Many autistic people, especially those with Asperger's and high-functioning autism, make remarkable progress through childhood and beyond. They learn to function in social settings; they develop coping strategies that allow them to overcome their anxiety; they teach themselves, often through highly intricate methods, to recognise body language and the non-verbal signals that neurotypical people respond to instinctively. Good therapy can help this process and has got better as our understanding of autism has improved. But interpreting this progress as 'recovery' strikes me as misplaced and potentially self-defeating.

As Professor John Matson at Louisiana State University argues: 'When you're autistic, you're autistic. It's a very stable condition.' Many people with autism have the ability to learn social interaction, if perhaps in a more mechanical way than their neurotypical peers. If they make it, it doesn't mean that they've recovered, in the same way that deaf people don't lose their deafness by learning to lip-read fluently. It simply means that they've learned to cope. The danger comes when a situation arises in their life that they haven't taught themselves to cope with. Perhaps they have to respond to a sudden trauma or a relationship breakdown. If they are deemed to have 'recovered' from autism, how will they gain access to the support they need? It's hard enough, as a parent, to have to go back to square one every time your child starts with a new therapist or moves another rung up the educational ladder; how much harder must it be to have to go through all that as a self-reliant adult in your thirties or forties? Misleading notions of 'recovery' not only offer false hope, they also risk undermining the painstaking progress made by adults with autism over decades.

Why the Leveson inquiry needs to investigate the MMR scandal

2012-02-08T05:23:00.000-08:00

This is a long post - nearly 3000 words - and is slightly off-topic as regards autism parenting. However, it touches on subjects which a lot of autism parents will be very familiar with and the way in which autism is often used as a media bogeyman, so I think it's relevant. I also think the coverage of autism and other medical conditions ought to be more to the fore in the ongoing debate on media standards. This post is also going up on my journalism blog at http://wordsforpress.wordpress.com.

My main line of work – journalism – has been in the spotlight a lot recently, thanks to the Leveson inquiry into media standards. It has been uncomfortable viewing for everyone in the business who has any kind of conscience left. On Monday the editor of the Daily Mail, Paul Dacre, a man rarely troubled by such liberal encumbrances, took the witness stand. It should have been a watershed moment. Instead it was a washout.

Mr Dacre performed well at the inquiry. He championed his newspaper’s campaigning journalism, highlighting its front page identifying the murderers of Stephen Lawrence. He mounted a smart defence of those much-derided stories about light switches that cause cancer and launched a spirited attack on Hugh Grant, who had directly attacked the Mail’s newsgathering practices in an earlier session. With all due respect to Hugh Grant, however, it all felt like a bit of a sideshow. No doubt the world-famous film star was a little irked by the predictable arrival of press photographers on his doorstep demanding a snap of his new baby. But it’s not as if anybody died, or was made seriously ill as a result. Which is more than can be said with confidence for the Daily Mail and Mail on Sunday’s coverage of Andrew Wakefield and the MMR vaccine.

The unravelling of the MMR scare is well documented. In 1998, Andrew Wakefield published a research paper in The Lancet which found traces of the measles virus in the guts of some children with autism who were admitted to the Royal Free hospital in London. The sample was tiny - just 12 patients - but the coincidence of the two elements, measles virus and autism spectrum disorder, was remarkable enough to warrant further research. Wakefield, then a researcher, did not attempt any. Instead he held a press conference at which he launched a campaign for the triple MMR injection to be scrapped and replaced by single vaccines. This was despite the fact that his research did not turn up any direct evidence that the measles virus had got into the children’s guts through the vaccine. He justified the claim on the basis that eight of the 12 sets of parents believed MMR was to blame. “It's a moral issue for me,” Wakefield said. “I can't support the continued use of these three vaccines given in combination until this issue has been resolved.”

With a single leap of faith, the germ of a health crisis was sown. At first the UK media was slow to pick up the story. Then, towards the end of 2001, it exploded. Wakefield published a review paper, producing no new evidence but again questioning the immunisation programme. Then in February 2002 the BBC’s Panorama broadcast a documentary, Every Parent’s Choice. It was based on Wakefield’s campaigning in the US, where he had been embraced by the vocal anti-vaccination community. Although the programme pointed out that a succession of studies had failed to reproduce or substantiate Wakefield’s initial findings, it left the impression that there were two competing viewpoints of equal merit, when the bulk of scientific opinion, even at that stage, was against Wakefield. It also featured the “disturbing stories” of three families who were “convinced” the vaccine had caused autism in their children.

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This was the point at which the Daily Mail entered the fray. In December 2001 the Prime Minister, Tony Blair, had refused to answer a question about whether his baby son, Leo, had had the triple vaccine. The Blairs thought this was an intrusion on their privacy and a breach of their agreement with editors that their children would be kept out of the spotlight. The combination of a health concern and a prime minister on the back foot proved to be irresistible, and over the coming months the Mail mounted a diligent campaign demanding answers from Blair while stoking parents’ worst fears that they may be injecting autism directly into their children’s bodies. As Peter Hitchens wrote in a column celebrating his pre-eminent place in the vanguard of unreason: “Has he spoken to the parents of a child with autism, parents tortured by the thought that they may have brought about this misery by taking their doctor's advice, and Mr Blair's advice come to that?” You know, autism, that dreadful condition where children sit in the corner groaning and rolling their eyes. You don’t want to live with the guilt that you might have been responsible for creating such a monster, do you?

This crude caricature of autism was the cornerstone of the Mail’s campaign, encapsulated in a column by Julia Carling in June 2002 headlined “Why I wouldn't give my baby the MMR jab”: “When I see my daughter running around and playing with her toys I feel sick at the thought that I could possibly be the one responsible for changing all that if the fears of MMR and its association with autism are true. How would I feel if I never again saw my daughter play in the same way?” Instead, Carling turned her back on medical science and placed her trust in a trainee homeopath who, in her words, “takes a rounded approach by offering homeopathic and nutritional treatments which can complement a vaccination programme by strengthening the immune system.” Exactly what these treatments were, or how they helped, remains a mystery to this day, but mercifully, Carling did still immunise her child against measles. Thousands of others would not.

The effect of this coverage has been chronicled by the Economic and Social Research Council, which surveyed 1,000 people on their understanding of the MMR controversy in April and October 2002, the year of the Panorama programme. This was the height of the panic: more than 1,200 items in the media covered the issue that year, and more than half of those appeared in the month of February. In April, 30 per cent of those questioned were aware that the bulk of scientific evidence indicated that the MMR vaccine was safe. By October, that figure had dropped to 23 per cent. In April, 53 per cent of people said they would give their children the combined shot for measles, mumps and rubella; by October this number had declined to 47 per cent. In both cases about 30 per cent said they would opt for single vaccines and about five per cent would not vaccinate at all. (It’s worth considering, in the context of these figures, that single vaccines were only available privately at that time. People were not asked what their choice would be if the only options were MMR or nothing.) But there is strong evidence that public confidence had declined as a result of the intense media coverage. As the ESRC report noted, somewhat charitably: “The coverage was unintentionally misleading in creating the impression that the evidence for the link was as substantial as the evidence against it.”

I should pause here to observe that in 2002, and even 2003, the MMR-autism link was the subject of legitimate journalistic inquiry. Andrew Wakefield’s study had highlighted a matter of scientific interest which was of genuine public concern. There was no evidence at this point that his methods might be flawed or his motives less than honourable. And the medical community took great interest in his findings, for the good reason that if any link between MMR and autism could be established, it would yield valuable insights in both fields, particularly the nature of autism, which remains the subject of intense investigation. But all this was about to change as we started to learn more about Dr Andrew Wakefield.

In 2003 Brian Deer, at the Sunday Times, began investigating Wakefield’s background and the substance of his research. Within four months he had compiled a dossier of evidence detailing how Wakefield was paid with legal aid money to examine children for a case being brought in King’s Lynn, Norfolk, against vaccine manufacturers. Four of the 12 children he examined for his Lancet paper were from the same group. Wakefield had failed to disclose his involvement in the King’s Lynn lawsuit, which constituted a conflict of interest, and hidden the fact that some of the autistic children used in his study had been selected from the same families who were involved in the court action. On the back of this, The Lancet said Wakefield’s study was now “entirely flawed” and should never have been published. The following month, 10 of the 12 co-authors of Wakefield’s study retracted one of its key findings, that they had “identified associated gastrointestinal disease and developmental regression in a group of previously normal children”.

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It was clear from February 2004 that Wakefield was not to be trusted, and his Lancet paper was somewhat less than 24-carat metal. Nevertheless, you would have had to search high and low in the pages of the Mail titles for any such revelation. It ploughed ahead with its campaign, by now far removed from the question of whether or not Tony Blair should have cleared the air about little Leo's MMR jab. Blind fear, as the Mail stable know better than anyone, is a steroid for newspaper sales. And “revelations” about the MMR vaccine and its link to autism poured out of the Mail titles’ pages like raw sewage. A typical example came in the Mail on Sunday in May 2006, which reported on a study of 275 children with regressive autism and bowel disease by Wake Forest University in the US. Under the headline: “Scientists fear MMR link to autism”, it noted in the second paragraph: “The study appears to confirm the findings of British doctor Andrew Wakefield, who caused a storm in 1998 by suggesting a possible link.”

The startling thing about this story was that at the very same time, Wake Forest University was putting out a press release with the title: “Wake Forest researcher warns against making connection between presence of measles virus and autism”. Dr Stephen J Walker, whose study was the source of the Mail on Sunday’s story, said in the release: “We haven’t done anything to demonstrate that the measles virus is causing autism or even causing bowel disease.” There was nothing in his research to support the Mail’s contention that any scientist “feared” that the two were linked. The main justification for that claim came from the discredited Wakefield, who told the paper: “'The Department of Health and some of the media wanted to dismiss our research as insignificant. The excuse was that no one else had the same findings as us. What they didn't say is that no one else had looked.” This was a simple untruth: as Ben Goldacre notes, a paper had been published in March that year, in the Journal of Medical Virology, which studied children with regressive autism who had had the MMR injection to see if there was any trace of the measles virus in their bodies. None was found. Dr Stephen Walker’s study, which was less than a third complete when the Mail on Sunday pounced on it, was never concluded and its findings have not been published in any journal.

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In the meantime, something far more concerning was happening. This was the point at which the Daily Mail and its sister paper graduated from being pernicious, chauvinistic rags and became a menace to public health.

The panic that ensued after Andrew Wakefield raised the spectre of autism being linked to MMR had coincided with a sharp drop in the number of children receiving the jab. At the beginning of 1995, just after the national MMR programme was introduced, 92 per cent of children had received the triple vaccine. By 2004, this figure had dropped to around 80 per cent. The following year, following Deer’s exposure of Wakefield and the Lancet’s criticism of his paper, there was a slight upward trend, to 81 per cent, for the first time in a decade. But four years later, the Department of Health warned that immunity levels had “stalled” at about 85 per cent. Professor David Salisbury, the government’s director of immunisation, warned that “MMR uptake is still not sufficient to remove the serious threat of measles outbreaks”. And the evidence backed him up: the preponderance of measles rose rapidly in the early years of the 21^st century, peaking at 1,370 cases in 2008, and remain high today. In 2011 there were 1,030 cases in the UK, nearly three times as many as the year before. In France 15,000 cases were recorded, including six deaths, while in Germany there were two cases of subacute sclerosing panencephalitis (SSPE), a rare late complication of measles which leads to “progressive deterioration of behavior and intellect, followed by ataxia (awkwardness), myoclonic seizures, and eventually death." One of the victims, a 13-year-old girl, is thought to have developed measles after being exposed to an unvaccinated child at her local doctor’s surgery.

Unless somebody interviews parents in detail about why they chose not to give their children the triple MMR jab, we will never know the exact sequence of cause and effect that led to the fall-off in immunisation from the 92 per cent figure of 1995. Today the figure is back up at around 90 per cent, still short of the target of 95 per cent for so-called herd immunity. The consequences are clearer: measles, once on the verge of being wiped out in the western world, is virulent again in Europe, and children are dying as a result. It is almost wholly preventable: figures show that in 95 per cent of measles cases, the infected person did not have the two shots of MMR that give the strongest immunity. And there is a great deal of circumstantial evidence that the Mail titles’ distorted coverage, drawing heavily on the public statements of a doctor whose integrity had been widely questioned and topped by shrill headlines about unsubstantiated “links”, was itself intricately linked with the fall in immunisation rates across the UK. The continued prevalence of measles remains a concern with the NHS, to the extent that secondary schoolchildren are now being sent letters urging them to boost their immunity, in case their parents withdrew them from the vaccination programme during the last 10 years.

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The Mail titles kept the faith with Wakefield right up until 2010, when the General Medical Council concluded a three-year fitness to practice investigation with a damning report that found he had shown “callous disregard” for the children in his study and acted “dishonestly and irresponsibly” in the way he publicised his research. The Lancet at last retracted his paper from the public record. A year later, Mr Wakefield was struck off the medical register for good. With the crutch of its story removed, the Daily Mail and Mail on Sunday finally ditched their star witness and stood down the anti-MMR campaign. Even so, the papers remain unrepentant about their coverage. On January 29 2010, the day after Wakefield had been castigated by the GMC, the Mail published a leader column headed “MMR and the lessons doctors must learn” in which it placed the blame on Tony Blair’s stubbornness in 2001, and the government’s refusal to offer single vaccines as an alternative, for the whole ugly circus. (More recently the paper has reverted to type by blaming the French for last summer's measles outbreak.) The rejoinder 'physician, heal thyself' has rarely been more apt.

Tony Blair’s decision not to reveal Leo’s immunisation status in 2001, at a moment of high public anxiety about the MMR vaccine was a misjudgment. The prime minister and his wife had form when it came to shady medical advice, having placed their trust in alternative healers such as Carole Caplin and her mother. Similarly, it is a matter of regret that The Lancet took 12 years to retract Andrew Wakefield’s paper, and that the General Medical Council did not begin disciplinary action against him until three years after the first serious allegations about his integrity were made. But none of these misjudgments were as reprehensible as the Mail titles' decision to continue with the MMR campaign, particularly in the six years from February 2004 onwards, when Wakefield was increasingly being exposed elsewhere as a fraud. To borrow one of the Mail’s favourite lines, nothing can excuse such reckless and irresponsible behaviour. Many other media outlets covered the MMR-autism link when the controversy was at its height and questioned the wisdom of administering the MMR vaccine amid such public hysteria. But the Mail papers turned it a campaigning issue, sustained the myth of a connection between MMR and autism long after it had ceased to be a subject of legitimate public investigation, continued to portray Wakefield as a credible and diligent researcher, and in doing so complied in his deceit.

Paul Dacre is due to return to Lord Justice Leveson’s courtroom later this week. Unless he is asked about MMR – and it may now be too late – one of the most egregious episodes in recent journalism history will merit barely a footnote. It is a grave omission: a catalogue of bad practice and bad faith that went beyond mere distortion and sensationalism and may have had a detrimental effect on public health. The inquiry will have failed in its fundamental role of scrutinising ethical and professional standards in the British media, and its authority to pronounce judgment on them will be diminished. Because if helping to expose thousands of children to a virulent disease isn’t unethical or unprofessional, I can’t for the life of me think what is.

For this relief much thanks

2012-01-12T10:01:00.000-08:00

Last week Euan had his first night in respite care. It was an odd experience. Unlike other eight-year-olds he’s not really set up for sleepovers, and our nearest family is 300 miles away, so we could count the number of nights we’ve been separated from him on two hands. Not always easy when your child rarely gets to sleep before 10 and turns every mealtime into an impromptu karaoke session.

So we were deeply grateful when, after a year of quiet lobbying, the social work department (yes, we’re known to social services. Too right we are) managed to find a place at a respite home a few miles away. At the same time, we were anxious about the idea of him going away and being cared for by strangers. Professional, dedicated strangers, but even so. Euan’s communication is slowly improving, but he lacks the ability to say what he’s thinking or how he’s feeling. He can tell you what he wants or what he doesn’t like, but he still can’t say why. And if something is seriously bothering him, he dissolves into a fierce tantrum. So asking anybody else to look after him means investing an enormous amount of trust.

We had a tour of the facility a few weeks ago. It’s a child’s paradise - soft play area, swimming pool, TV room and sensory garden (which means things that make noises in the wind or have knobbly surfaces that you can run your fingers over). And four basic bedrooms: this was the point that I realised he really was going to be spending nights in here. Eventually it’ll be whole weekends. Weekends when we can pretend to be a bit more like an ordinary family, with only one autistic child who can enjoy a couple of days out of the shadow of his noisier older brother. Ah, bliss.

We went to pick up Euan on Friday morning, after his first night away. As soon as he saw us, he pulled his shoes on and made a dash for the door. You might have thought he was desperate to get away. But this is just how Euan divides his life: home is home, school is school and respite is respite. There can be absolutely no seepage from one into the other. He might make a good secret agent.

What I do know is that all of us felt refreshed for the change of routine. In the light of this, I was interested to read recently that respite care often reduces the need for other forms of intervention. It’s now acknowledged that the stress of raising autistic children puts a strain on the mental health of the parents and makes the children more anxious, which in turn increases the demand on the health service. In the worst situations, the child or the parents, or both, end up in institutions. So it’s disappointing to read that many local authorities are shutting down or restricting respite services as part of the ongoing budget cuts. It would be a shame if short-sighted politicians and their accountants took the view that respite care is some kind of dispensable luxury when for many families it’s the difference between coping and breaking down. And that, ultimately, is a more costly business in every sense.

Education: why it's not a matter of choice

2011-11-28T05:08:00.000-08:00

I won’t be signing the petition by 38 degrees which calls on David Cameron to reverse his policy of ending the ‘bias towards inclusion’ in schools. Though I agree with much of the sentiment behind it, and I wouldn’t trust the Tories’ plans on education as far as I could throw Michael Gove (the precise measure of which, alas, I have yet to establish under laboratory conditions), I find it too simplistic an approach. Like the petitioners, I’m not convinced that there is a ‘bias towards inclusion’ at the moment, but I’m still less sure that there ought to be one. And the whole debate about ‘parental choice’ risks obscuring a more significant issue about how we support children who need extra help in the classroom.

During the 2010 election campaign Jonathan Bartley, whose son has spina bifida, ambushed Cameron on the issue of ‘bias’. He had spent two years and considerable sums of money going through tribunals so that his child could be educated in mainstream education. But as Bartley himself goes on to say: 'this, at the end of the day, is a question of both resourcing and culture. Either we are for inclusion or we aren't. To include children with special needs in mainstream schools takes commitment and a lot of work.' It’s not (and here I depart from Bartley’s argument) about insisting on a “bias” either one way or the other. It’s about making sure the resources are in place to make sure that children are educated in the right environment, and given enough support to ensure they thrive.

My own experience comes from putting two children into the education system in Scotland. Euan was originally sent to our local primary school, chiefly because he was diagnosed too late to be given a place in a special school. His primary school did everything they could to accommodate him; his classmates, encouraged by his teacher, were hugely supportive of him even though he must have deafened them at times with his singing. But it became clear as the year went on that mainstream primary school was the wrong place for him. On the other hand, when Adam went to school two years later we fought a bitter battle against the education department’s recommendation to send him to a different special school because we felt he could cope in a mainstream primary school if he had the right support. And, so far, he has. So I have experience of arguing the case on both sides.

The problem with insisting on ‘bias’ towards mainstream education is that it implicitly relegates special education to the second division. For this reason I vehemently reject the language that describes special schools as ‘segregation’ and marks children who attend them as ‘written off’. If this is the case, then the answer is to make the education in those schools better, not to shoe-horn children who may be contented and thriving in special education into mainstream classrooms where they may end up being confused, neglected and bullied. Someone I know who works in a mainstream school recently commented on a disruptive child: ‘autism doesn’t begin to describe it.’ Actually it’s more likely that the opposite is true: in many cases autism only begins to describe a child’s condition. The full picture can be a mosaic of subtle disabilities that may need the attention of half a dozen specialists. Some children will thrive in mainstream if they are given adequate support, but sometimes we should accept that it’s too much to ask. Euan is now in a class of four children with two specialist teachers, a level of attention that a mainstream setting cannot possibly provide. There is a sensory room where he goes when he becomes overstimulated and a constant stream of therapists coming and going – again, not services we can reasonably expect to install in every primary school.

On the other hand, where a child is able to cope with the mainstream curriculum, it should be encouraged. Inclusion does have benefits for the whole class and sends out good signals about our attitude as a society to disabled people. But that goodwill is entirely worthless unless it is backed up by practical support. Unfortunately, the Tories’ cuts agenda means that classroom assistants are being laid off and services that might help disabled children, such as specialist after-school care, are increasingly thin on the ground. So more children go into the special school system who don’t belong there, to the detriment of everybody – mainstream education, special education and, worst of all, the child themselves.

The Tories’ answer of ‘promoting choice’ is a distraction from what really matters, which is making sure that children are given the right education in the right setting. That means providing classroom assistance where children are being included in mainstream, and ensuring special schools are adequately resourced rather than tainted with the language of segregation. It means doing that unfashionable thing: investing money in public services. Instead we have the latest alarming development, being pioneered in Lincolnshire, of inviting all schools, including special schools, to become privately run academies. I can’t begin to think how, or why, anybody would run a special school for profit. In fact, if anyone can convince me that Railtrack is a good business model for the education of vulnerable children, I’ll eat a train.

The myth of parental choice is that it is empowering rather than restrictive. It lands parents with the burden of securing a good education when it should fall on the state. It implies that some schools will always be worse than others, and that if your children end up in a rotten establishment it’s your own fault for not choosing wisely. Yet it’s worthless to offer people more choice if you simultaneously impoverish the choices on offer, as the government is now doing. And the reality is that parents who want to challenge the system will have less choice, not more, because of another cost-cutting measure: the withdrawal of legal aid support for education tribunals. Families who find themselves in Jonathan Bartley’s position will no longer have the means to fight the decisions the state has made about their child’s education. The solution is not more choice, but better options. If 38 degrees draft a petition on those lines, I’ll be the first to sign.

Beware the grief farmers

2011-10-29T02:35:00.000-07:00

At the risk of raking over old ground, and fairly morbid old ground at that, I wanted to revisit the subject of grief and autism. Firstly, because it was the catalyst for an intense and fascinating discussion a while ago on the Facebook page hosted by The Thinking Person's Guide to Autism. Secondly, because of some events I'd experienced at close quarters (though I wasn't directly involved) in which real, raw, agonising grief was a factor. And thirdly, because the concept is still mixed up with feelings of guilt, shame, and a sense that it is somehow the "wrong thing to feel".

The most common objection to grieving an autism diagnosis is that grief should be reserved for an actual death. Therefore parents who grieve for an autistic child are treating them as if they are dead. This will become a source of tension and resentment when the child gets older. I'd begin addressing this point by directing people towards Jim Sinclair's essay, Don't Mourn For Us, in which Sinclair (an autistic man who was non-verbal for most of his childhood) sanctions the grief response, on the condition that people understand that what they are really grieving is their own dreams and aspirations. They mourn a child who never actually existed. If it helps you to realise this, and accept that the child who was born is fundamentally different from the child you imagined, grief is an acceptable mediator.

I've made the point before that grief is a healing process: it allows people come to terms with overwhelming and irreversible setbacks in their lives. It is often confused with misery and self-pity when its true purpose is to overcome them. On the other hand, I have had it brought into sharp focus lately that the grief felt for a child who was never born is different in nature from the grief that accompanies actual death. Recently I read a heartbreaking, unflinchingly honest memoir by the Dutch novelist Adri van der Heijden about his son Tonio, who was killed in a cycling accident in Amsterdam last year. At about the same time, somebody I know in real life lost a close relative in similar circumstances. I wouldn't try to compare my own feelings with what those people must have gone through: the bewildering sense of random injustice, the raw shock and devastation, the evaporation of hope, which is all the more intense when a young person dies. At the same time, I reject the suggestion that other people's grief can somehow console me or diminish my own. The refrain that "other people have it worse" is invoked too cheaply, too often.

Grief is a healing process, but it has to be worked through. This is the other reason why I would argue it is not misplaced in the case of autism. The alternative is to be locked in a state of unresolved grief. There are, sadly, organisations out there which depend on parents being in this state. They want people to resist, angrily and vociferously, the idea that autism is an indelible element of their child's make-up. They want them to take up cudgels and campaign to "get their child back". They will offer them all manner of snake-oil remedies and false hopes of a "cure". And they will charge a hefty premium for spurious treatments, many of which are no better than witch doctors' potions. I think of them as the grief farmers, harvesting the misery of others for their own gain. They will play on the guilt that repressed grief engenders, telling parents that if they are not prepared to sacrifice everything they own for their children, they are betraying them (why do unproven treatments, as an aside, cost so much more than medically approved ones?). All of this misses the whole point that Jim Sinclair eloquently puts forward - that you cannot "reclaim" a child who never existed in the first place. You can give them therapy, acceptance and love, you can respect their autism rather than abhorring it, and they will have a chance to thrive. And you are much better placed as a parent to offer these things once you have worked through your grief. That's why I'll go on arguing that it's OK to grieve, because to deny grief is far more damaging.

A minor milestone

2011-09-20T14:04:00.001-07:00

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.

Cause, consequence

2011-08-19T04:04:00.000-07:00

Adam comes down for breakfast, smiling and bright as a button. He remembers something in his bedroom and dashes back up the stairs. Half a minute later I find him on the floor, distraught, face red and eyes swollen with tears.

I ask him what’s wrong. He points to a mug half-filled with water on the floor. “I didn’t drink my water.” Every night before he goes to sleep Adam drinks a mug of water in bed. It’s the last phase in a well-established night routine. Last night he must have been too tired to drink it, so it sat on the floor all night and when he woke up he must have knocked it over. Half the water is in the mug and the other half is seeping into the carpet in a neat ring.

“Do you want to drink your water, Adam?”

“Nooo! It needs to fill up!”

I go downstairs, fill the mug to the brim and tell him to come down and drink it.

“No! I can’t!” This is his standard response when he doesn’t know what to do. So I take the mug back up and put it on the radiator. This is no good either. He picks it up and puts it on the floor, on the exact spot beside his bed where it was before.

“Do you want to drink it now, Adam?”

“No,” he says and skips down the stairs to resume breakfast. The mug sits there until he’s left for school.

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A few weeks earlier we’re in the Ikea cafe, having meatballs and chips for lunch. It’s going well until Magteld filches one of the chips from my plate and pops it in her mouth. Euan is incensed. “You have to put the chip back!” he screams. She puts one of her own chips on my plate. But substituting a different chip isn’t what he means. He reaches into her mouth and tries to excavate the one that’s disappeared down her throat. No amount of explaining will convince him it can’t be done. He won’t give up until the plates are cleared and we’ve moved on from the table.

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We all remember those incidents when a favourite toy was damaged beyond repair and we still took it to our parents to fix, but these two incidents magnify that desire to undo mistakes to the point of intransigence. Adam didn’t want the water: he just wanted things to be put right. Euan was enraged by his mum’s refusal to undigest a chip. Do autistic children have more trouble than others understanding that sometimes there’s no going back, that not all loose threads can be re-ravelled?

On Language

2011-06-22T05:35:00.000-07:00

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.

Joining the threads

2011-05-19T05:19:00.000-07:00

If looking after children is a full-time job, looking after autistic children is more like running a small franchise. This blog is about the various health and education professionals we’ve dealt with since Euan was first diagnosed five years ago. I should preface it by saying that as individuals, they’ve mostly been professional, helpful and informative. I recognise they have their own demands and pressures, that working conditions are far from ideal and probably getting worse. But from a parent’s perspective trying to bundle up that care and manage it can be a hideous tangle.

In the context of both our children we’ve come into contact with educational psychologists, speech and language therapists, occupational therapists, social workers, paediatricians, and clinical psychologists, as well as various school and nursery staff. (This is quite a short list: plenty of other parents would add sleep counsellors, dieticians, various other doctors and therapists, and even the police.) Some of them are assigned fairly quickly; for others (such as occupational therapists) there is a waiting list. Many services are only available once your child has been diagnosed – which itself entails a wait of between six and 18 months. Most of them carry out assessments and write reports. These often contain a referral to another expert or therapist – which means going on another waiting list and adding yet another phone number to the lengthening chain.

The exact nature of their roles is not always clear to begin with. For example, an educational psychologist will assess your child’s suitability for a certain type of school: should they be in mainstream or special needs education, and what classroom support do they need? It’s only later on that you realise that this is an obligation to the education authority, not the parent, and that their main criterion is to fill places in schools, in the context of increasing budgetary restraints. Once you understand that, you can start to understand why and how they make their decisions.

From the parent’s perspective, the hardest and most daunting aspect of the exercise is getting everyone to work to the same script. Since none of them has a leading role, that task falls to the parent. Magteld has spent much of the last three years organizing meetings between schools, health professionals and therapists, sometimes as many as three a week. And still people ask her whether she misses working full-time. The more frustrating thing is that after putting in so much work to bring people together, the parent is often the one whose voice is crowded out.

The other major issue is communication. Schools, doctors and therapists who aren’t in regular contact seem incapable of talking to each other (this is one advantage of special needs education, where therapists work directly with the school). Contact with parents is even more sporadic. When Euan was transferred from mainstream to special needs education, none of his records went with him. All the work that his class teacher had done to understand and accommodate his needs dropped into a black hole. In the meantime, Magteld had fought a largely fruitless campaign to keep in contact with his educational psychologist. After not hearing from the person for months, we learned from the school that they had been in to see him every week. No reports, no feedback.

Professionals will protest that they are doing the best they can for your child, and mostly they are, but this isn’t the issue. Imagine a house being decorated by four different teams, each with a different expertise. But instead of working together on the whole building, they each take one wall and devote all their energies to it. None of them work together or even pay attention to the other three walls. So one wall is weatherproofed to the max but unpainted, another is immaculately painted but the guttering hasn’t been done, and so on. And none of the teams ever stops to ask the homeowner if they’re happy with the state of the house. That’s how managing the care of an autistic child often feels, with the parent in the role of the homeowner.

As a rule, experts are by definition the best placed people to make these decisions, but it's parents who have to live with and manage the outcome. For that reason they need to be at the hub of the decision making process. Yet all too often, keeping them updated is an afterthought at best. Pushing them to the periphery because they’re ‘awkward’ or they ‘don’t understand’ ultimately wastes more time and effort than it saves – and it does nothing for the child.

Why can't they just act normal?

2011-03-10T09:33:00.000-08:00

It’s a phrase you come to live with when you have autistic children, like a creaking floorboard or a dog in the street that won’t stop barking: ‘why can’t he just ...’ You hear it from teachers (though not, to be fair, at my children’s schools), from people in the street or the shop, from casual acquaintances or other parents. But above all, you hear it going round in your head like a refrain. Why can’t Euan just get dressed without being distracted by his Lego every two minutes? Why can’t he just watch a film without laughing loudly at every dramatic scene or kicking his legs in time with the characters on screen? Why can’t he just accept the fact that there’s no cheese in the house and he’ll have to have tuna on his sandwiches? Why can’t Adam just go downstairs and put his shoes on without lining up all his cars first?

At heart it’s a question about anxiety, but it’s also about anticipation. Autistic children seek comfort in routine because the world is a big confusing place. They look for cues and find them in the objects they know best. A report from a psychologist who observed Euan in school recently put this in perspective. Whenever the class moved from one place to another or started a new activity, he looked to another child or the teacher to prompt him. At playtime he waited for the other children to move before following them out of the room. Once he’s engaged in an activity he’s quite happy, but the transition between stages is difficult for him, especially if it’s interrupted before the end. Anything out of the ordinary raises his anxiety and make him agitate for the familiar. During a dance lesson he concentrated on the steps and managed to keep time with a partner, but as soon as he sat down he pestered his teacher to go back to class. On holiday or days out, he insists on going back to the car as soon as he’s seen what he came for. This might also explain why he’s suddenly much better at dressing himself now that he has a chart on his wall telling him what order to put his clothes on in.

And it’s this heightened anxiety that feeds back into my initial question. If I can’t have a cup of coffee before leaving the house in the morning, I feel mildly annoyed and probably a bit tired, but I quickly forget about it and start to anticipate on the next thing I have to do. But my autistic children don’t do this: they can’t shift between stages like this unprompted or anticipate what’s coming next. They need either a prompt from outside or a clue within the task that tells them that it’s finished and they can progress to the next thing. Deviating from the plan is literally unthinkable because they have nothing else to work with. The answer to the question ‘why can’t they just do it differently?’ is simply: ‘they just can’t.’

Visible means of support

2011-01-11T04:28:00.000-08:00

When Euan was first diagnosed (an event that seems a lifetime ago now), we were confronted with a void. Like many families coming to terms with autism, we felt terribly, achingly alone. This wasn't strictly true or fair on the various professionals who came and went, called us with advice and thrust helpful leaflets under our noses. All that support was good and instructive, but none of it felt very comforting.

In short, we grieved. And it hurt. And one thing that no amount of expert advice can do is take the pain away. Which is why I feel that one of the most important things we did at that time was join a support group. It reminded us that there were other parents in the same situation as us, who we could learn from or just lean on when we needed a crutch. It allowed us to talk about our experience with people who had been through the same process, who wouldn't judge us, feel the need to utter empty words of comfort, or console us with the thought that there were other people in the world who were had it worse.

Crucially, there was nothing formal or structured about the group’s meetings. Every two weeks we get together in a school staff room, put the kettle on, sit around and chat about whatever's on our mind. Trained nursery staff look after the children in a separate playroom. It gives us a rare moment to breathe and talk freely as adults while knowing our children are in good hands. A couple of times in the summer we have a day out together, and once a year some of the families spend a week in a holiday park. Many autistic children don’t cope well in places like hotels and airports, struggle with major breaks from routine and have a poor sense of danger, all of which can severely curtail their families’ holiday options.

In the past we've raised funds for the group through appeals such as Children in Need and Cash for Kids, as well as our own events like charity discos. However, as we’ve recently elected a government who've decided that the disabled should have their services cut so that bankers can continue to binge on bonuses, these sources of income are drying up. In any event, though, giving to charity is bound to be one of the first casualties of a recession. So on January 23rd a few of us will be donning red suits and false beards and running the Santa Dash in Glasgow to raise money for our group.

Small local charities don't need a great deal of money and can make a real, tangible difference to people's lives. In the case of our group, the funds pay for the creche facility for about 20 nights a year and cover the cost of the annual outings. Our members come from all walks of life: what brings us together is that we all live in the south side of Glasgow and have children with autism. Life isn’t all chaos and despair. Our children are a joy, not a burden, but they sure as hell put us through the mill sometimes. And at those times, the 90 minutes a fortnight when we get together over a cup of tea and share our experiences can feel like a lifeline.

If you’d like to sponsor me and support the South Side Communication Disorder Group, please get in touch here for details of how to donate. Because of the size of the charity we haven’t been able to set up a page with justgiving or any other online donation service.

If you live in the UK and want to find out if there’s a support group in your area, the National Autistic Society has a comprehensive Autism Services Directory on its website.

The grammar of emotions

2010-12-18T13:14:00.000-08:00

This blog entry was meant to follow straight on from the previous one. Somehow or other seven weeks have happened in between.

On one of the first occasions I visited a therapist in connection with Euan, I raised the subject of empathy. I was starting to understand that autistic people struggled to connect with others around them, and asked if Euan would ever get into a situation where he felt sorry for someone, but didn't know how to express it. 'Oh no,' she replied; 'an autistic person wouldn't think like that'.

This seems to have been the prevailing view until quite recently. Autistic people didn't identify with complex feelings because they just didn't have them. Their emotional lives were elementary and functional; they were essentially monochrome, oscillating between docility and extreme anxiety with nothing in between. It was supposed to be comforting, implying that they were inoculated against the nuances of deceit, betrayal, double-dealing and insincerity. They were innately honest, since they didn't perceive the value of saying or doing things purely for appearance's sake.

Yet the more I saw of autism, the less satisfied I became with this explanation. Not least because it seemed to alienate autistic people from mainstream society: if they didn't grasp shades of emotion, it implied they couldn't form deep and meaningful relationships. But also because it didn't chime with what I observed in my children's development. Although he struggled to intuit what other people were feeling, he was capable of understanding them if he was given enough clear signals. When Magteld went to bed one afternoon with a migraine, he went upstairs and got himself ready for bed without a word of fuss, even though this is usually an exhausting operation that can last several hours. When Adam swept his juice off the table in a rage and soaked himself, Euan screamed in sympathy, then fetched the kitchen roll and diligently mopped up the spill. These are not the actions of someone who can't feel your pain.

Here's a more contentious example, but intriguing nonetheless. During the summer we went to see the boys' great-grandmother in Holland. She's been widowed for some years, lives on her own and doesn't have much social contact. Her house has a large L-shaped living room that feels empty even when half a dozen people are sitting in it. Usually Adam is stubbornly indifferent to family members he doesn't see very often. But when we came to leave his great-grandmother after visiting for two hours, he suddenly started crying plaintively and calling out for her. It was so out of character that the only explanation we could think of was that he somehow picked up on her sense of loneliness.

The more I see of these responses, the more I think the problem is not so much a lack of empathy: with the right cues their empathy can be remarkably sophisticated. It's more an inability to decipher those subtle signals that people give out at times of emotional conflict - a failure to jump the chasm between what people think and what they say. If it's made explicit to Euan that someone is feeling sad, or tired, or sick, he can respond appropriately, but if you wait for him to work it out for himself, expect to be disappointed. A few autistic people have told me of the painstaking efforts they made to understand the invisible rules that others lived by, and the light-bulb moments when they manage to work out the correct response in a certain situation. In some ways it's like the difference between learning a native language and a foreign one: either way you have to learn the grammar, but the foreign student needs a textbook.

Biting the silver bullet

2010-10-27T09:44:00.000-07:00

At the end of a superb and insightful interview in Wired magazine (I urge you to read it if you haven’t done so already), Ari Ne’eman is asked a question that often lurks in discussions of autism: ‘If someone offered you a pill to wake up tomorrow without autism, would you take it?’ His answer was honest and devastating, in the sense that it was a direct assault on the emotions that underpin such well-meaning enquiries. He said: ‘That’s an intensely silly question. How can I draw a line around one part of my brain and say that this is the autistic part, and the rest of me is something else?’
Ne’eman is a 22-year-old autistic man who was appointed by Barack Obama to the US National Council on Disability last December. Not everybody was enamoured with his answer to the ‘autism pill’ question. Some parents attacked him for taking such a dismissive stance to their long-cherished dream of finding a cure for autism. It is a dream that has been enthusiastically, at times aggressively, championed, by campaigning charities such as Autism Speaks, which has ploughed millions of dollars into research into the causes of, and possible medical treatments for, autism. Faced with that kind of emotional input from parents who are gripped by the wish for their children to grow up normal, it takes a fair amount of kind of courage to call their hopes and desires ‘silly’. But if Ne’eman’s choice of words can change the flow of the conversation around autism, he will have performed a great service.
The ‘magic pill’ hypothesis comes up frequently in discussions about autism without anyone pausing to consider what the question actually means. In essence, it presupposes that autism is an alien or hostile force contained within the autistic person that could, if only we possessed the right medical knowledge, be extracted and disposed of at no cost to the host. Autism Speaks' I Am Autism video took this philosophy and tied it to a sledgehammer, addressing ‘autism’ directly as an enemy agent that parents would fight tirelessly to defeat using the irresistible forces of love. Even a serious and thoughtful commentator such as Michael Blastland, in his book Joe (which, again, I recommend highly), takes time out to express the wish that his son could be released from his autism.
In the case of parents struggling to bring up severely autistic or non-verbal children, these sentiments are understandable and hardly surprising. Yet at the same time, you only have to look at the thinking behind the ‘magic pill’ question to see why the idea is so abhorrent to autistic people themselves. It gives a mythical, alien quality to their condition and, by extension, to their essential selves. Or, to quote Ne’eman again: ‘That way of looking at autism is predicated on the strange idea that there was or is a normal person somewhere inside me, hidden by autism, and struggling to get out. That's not reality.’
Taking the more severely autistic of my children as an example, there are two points I’d argue here. The first is that as far as I can see, there is no ‘autistic part’ to Euan’s brain that can be safely removed; nor is it a filter that distorts the outlook of an otherwise ‘normal’ person. It is an intrinsic part of who he is. Suppose for a second that a ‘magic pill’ really does exist. One night, before going to bed, he takes it. The next morning he wakes up a fundamentally different person. The chemicals in the pill have triggered a violent change in his personality that affects the way he sees, hears, feels, interacts with and understands everything around him. His world is suddenly filled with emotions and sensations that he could never directly perceive before. Thanks to therapy, he probably knows they are there and has developed ways to accommodate their presence, in the same way that a blind person learns the layout of the furniture in a room. But now he has to cope with them in the raw, through the strange, intense contortions of people’s faces that now scream for his attention, along with a whole range of nuances and gestures that the rest of us spent our entire childhoods and early adult lives learning to interpret (and still frequently get wrong). Faced with such an explosion of emotional input, the only reasonable reaction that I can imagine would be a total nervous breakdown.
Secondly, the ‘magic pill’ aspiration, however earnestly expressed, symbolises a desire to relieve the parents’ anxiety and discomfort, rather than the ambition to improving their children’s quality of life. I’ve always declined to join the ranks of parents that vow to ‘fight’ their children’s autism, preferring to negotiate with it instead. Autism is a condition that can be mitigated through therapy, but the person will always be autistic. They may become high achievers, such as Temple Grandin; they may marry, have children of their own and enjoy the company of a (probably small) circle of supportive friends, but their relationship with the world around them will always be an autistic one. The role of the parent, in my opinion, is to see that they don’t suffer for it; the role of society is to exploit their abilities while providing for their disabilities. It doesn’t seem too much to ask.
Much of the protestations on the part of parents boil down to a single sentence: ‘We only want the best for our children.’ This is true: of course we do. But we need to understand that it is not enough to be well-meaning. Accepting autism means accepting there is no silver bullet that will cure our children. We have to understand them from the inside out, to see things from their point of view, to share their vision of the future rather than impose our own, and to give them the thing they really feel the lack of: empathy.

The sense of self

2010-08-25T09:44:00.000-07:00

As Euan gets older his behaviour becomes more evidently autistic. The lag between him and other children of his own age is unavoidable. Three-year-old children who don’t speak to strangers are quietly endearing; five-year-olds are shy and withdrawn; seven-year-olds are strange and uncommunicative. No doubt as a teenager he’ll be labeled sullen and anti-social. Last year, when he was in mainstream school, Magteld took him to a birthday party. When I asked how it went, she told me he’d spent most of the afternoon licking the goalposts. He didn’t go back this year. I tell myself it’s because he’s at a new school, and in any case it’s probably a mercy.
Often he struggles visibly to make sense of the world around him. It can provoke sudden, violent outbursts of rage or tears if things aren’t going his way, and not just in the normal sense of getting what he wants. He can be reduced to floods of tears if someone else mentions something that’s on the tip of his tongue – almost as if he fears the uttered words have been stolen from his mind and he can’t retrieve them.
Language, in a wider sense, seems to function differently for Euan. We’ve observed the familiar autistic traits such as echolalia and pronoun reversal. In Euan’s case, though, it seems to be something more profound. It’s not just the way he sees other people and objects: I get the sense it reflects the way he sees himself.
As I said, the early examples followed a familiar pattern. Euan would refer to himself in the third person and mix up ‘I’ and ‘you’. This is a stage all children go through, but it’s more pronounced and lasts longer in those with autism. I remember being at my parents’ house once and hearing his voice from the open cloakroom door: ‘Where’s Euan? He’s in the toilet.’ What’s interesting is that even now, when he’s sorted out ‘I’ and ‘you’, he still re-enacts snippets of dialogue in this way. Often it’s accompanied by an action: if he has an impulse to do something he shouldn’t, like tip back his chair or shout at table, he’ll often do it and immediately tell himself off for it. In extreme cases he’ll grab his own arm and drag himself into the hallway to stand in the corner.
Pronoun switching is more complex too. For a long time he’d say things like ‘she’s a boy’ and persistently switch ‘he’ and ‘she’. Once he told us about a boy in his class who had gone to hospital. He had written the story in his school book with his teacher and rehearsed it, but even in writing he insisted in saying ‘She was OK’ as the last line. Even now he has trouble applying Mum and Dad to the right parent.
The question naturally arises: is there something fundamentally different about Euan’s self-perception? The few studies I’ve found about this tend to argue against this – such as Dawson and McKissick, who write: ‘It was concluded that the autistic child's social deficits are not due to a basic lack of differentiation between self and other.’ It may be that this is a phase that Euan grows out of as he becomes more socially and linguistically competent. He has no problem differentiating between himself and other people: he uses ‘I’ to talk about himself, such as ‘Look, I made it’ when he builds a Lego model. But it still seems as if there’s a distortion in the way he perceives events that involve him. It’s almost as if he tries to view them from outside himself and replay them in his mind later, like a chess player going over the moves from a previous game to hone his strategy. The more I think about it, the more I get the impression it’s to do with control: if things happen that he doesn’t have command over, he has to go back over them, again and again, until he’s mastered the situation. It’s an untested theory, but it would explain much of the frustration, the anxiety and the constant restless activity. Social interaction is a skill which Euan has to learn painstakingly, through trial and error. That he’s prepared to put so much effort in is actually quite remarkable.