Saturday 20 October 2012

The hardest thing to say

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.

Sunday 13 May 2012

Do not adjust your set

Saga Noren, the lead character in Scandinavian TV crime drama The Bridge.
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.

Thursday 15 March 2012

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

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.

Tuesday 13 March 2012

The final problem

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

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

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

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

Monday 27 February 2012

The tangled chain

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

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

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

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

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

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

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

Monday 13 February 2012

Recovery: a conflicted position

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.

Wednesday 8 February 2012

Why the Leveson inquiry needs to investigate the MMR scandal

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

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.


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”.


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.


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 21st 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.


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.

Thursday 12 January 2012

For this relief much thanks

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.