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.

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.

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 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.