http://www.observer.co.uk/comment/story/0,6903,647836,00.html

 

Why parents are angry about autism

None of us knows the link between the jab and autism. But we do know that autistic children need better care and education. And they need it now, free from the constricting binds of red tape

Nick Hornby
Sunday February 10, 2002
The Observer

I have just had an argument with Islington Council about a parking ticket, and I am angry. I got the ticket when I was dropping my autistic son off at his mum's house; I could not display the disabled badge that enables me to park in her street because she and I have to share the badge (if we were issued with two, we were told, we 'might abuse the system', a significant indication of the trust invested in us), even though my son has two cars and two homes - which means that there will always be a moment when the badge is being transferred from one home to the other, which means that there will always be a moment in which a traffic warden can issue one of us with a parking ticket.

It was during that brief window of opportunity that the traffic warden struck. It wasn't his fault - he wasn't to know - but I had hoped that my letter of explanation would absolve me: after all, I could, in theory, receive six parking tickets a week, through no fault of my own. No absolution was forthcoming, of course. I was told that I got a ticket because I wasn't displaying a permit or a disabled badge - aaaaagh! I know I wasn't! - which means that no one had bothered to read the letter I wrote in the first place, which then entailed another phone call, at the end of which I ended up slamming the phone down. I will, I suspect, end up going to court.

I know, I know... It's a minor, silly incident, and you too have no doubt endured something similarly exasperating this week. But there have been so many bureaucratic idiocies involving my son, and his health, and his education, each one apparently avoidable, each one exhausting and irritating and time-consuming. He has nearly lost his school several times, for the pettiest of reasons, even though there is no educational provision for him elsewhere (which is why desperate parents set it up in the first place), and even though it has official recognition; and there is a problem surrounding his statementing, and there are several difficulties connected with his treatment at the Royal Free for the now infamous bowel disorder which may or may not have a link with the MMR vaccine...

Indeed, so bureaucratic are these idiocies (and so idiotic are these bureaucrats) that I cannot even mention most of them, for political reasons: they are all ongoing, and as we are obliged at every single turn to go grovelling pathetically for meetings and favours and permission and approval and treatment, I cannot afford to upset anybody, especially as it is not only my child who is affected, but all his schoolmates too.

We have heard a lot, in recent months, about breeding-grounds for discontent. After all, we've been bombing a lot of them. And it seems to me that the current MMR crisis can only be properly understood in the context of the waking nightmare that is daily life for any parent of an autistic child - and I'm not even talking about dealing with the condition itself, which is nightmarish enough. Our grounds for discontent have been bred in the municipal offices and Government departments of Britain, and if Tony Blair and Yvette Cooper are serious about winning the propaganda battle over the MMR vaccine, these are the places that they will have to bomb back to the Stone Age. (I do accept that this bombing campaign should be purely metaphorical, at least in its initial stages.)

Let's assume for a moment that there is a link between the MMR vaccine and autism. I know this is an enormous assumption, and that no such link has been proven (nor, incidentally, has it been disproven, despite Government and media suggestions to the contrary), but the point is that a significant percentage of parents with autistic children - thoughtful, intelligent, observant people, otherwise immune to conspiracy theories and paranoid delusions - are entirely convinced that this vaccine has irreparably damaged the lives of their children.

Can you begin to imagine their fury and hurt? They have done what this and preceding Governments have told them to do, which is to protect their apparently healthy kids against measles, mumps and rubella, and as a result, they feel, they have ended up with permanently disabled children - possibly incontinent, prone to screaming fits, irrational rages and sleeplessness, children with severely impaired or possibly non-existent communication skills... oh, and if you're really unlucky, a child with a debilitating and painful bowel disorder. First, they cannot get anyone to diagnose the condition (the average age of diagnosis is six); and then they cannot find the education they want (in some cases, they cannot find any education at all). If they do find the education, then they often have to take their local council to court to pay for it - the motto of our local authorities seems to be 'Stonewall 'Til They Sue'. And one of the very few people showing any interest in their child's agonising bowels has been forced to resign from his job, because his research does not fit comfortably with what the Government wants to hear. These parents have, in other words, been hung out to dry.

Last week, I listened with growing disbelief and rage as Yvette Cooper (an otherwise smart woman who appears, sadly, to have been given a vaccination that has turned her into a robot) accused anyone calling for single vaccines of 'undermining public confidence', as if it were anyone's job but her department's to restore it. The truth is, Yvette, that these parents who have been on Panorama and London Tonight and in every national newspaper saying that their children were made autistic by the MMR vaccine - the very parents, in other words, who are engendering this panic, and whose fears prompted Andrew Wakefield's research in the first place - are really not feeling very public-spirited right now.

This is their moment: the media are falling over themselves to record what they have to say, and as a consequence they have, for a few brief weeks while this crisis lasts, a power and a voice that is consistently denied them otherwise. They are obsessed by the past, by what they think caused their child's condition, because the future looks so difficult, so frightening and exhausting. Maybe if, at any stage, someone in officialdom had attempted to assist them, rather than actively obstruct them - and after a while, this obstruction begins to feel like naked hostility - they would feel a little less bitter, a little less ready to point the finger of blame at what may still turn out to be a harmless jab. One woman with an autistic child is currently involved in five separate tribunals involving more or less every single part of her child's life. How strongly developed is her sense of public duty at the moment, one wonders? How prepared is she to shut up in order to do the Department of Health a favour?

Meanwhile, the Government and our health officials, in their attempt to assuage our fears, continue to feed us information that is partial, corrupted or downright wrong. A medical officer on Radio 5 Live quoted from a Scandinavian study that she must have known has been discredited by the Medical Research Council. Tony Blair referred to the unhappy Japanese experience with the single vaccine, without telling us that it had been offered because a rogue batch of the triple vaccine was provoking untoward reactions, notably meningitis, in some children; the ensuing measles epidemic can be explained by a subsequent and understandable loss of public confidence in government advice.

The Department of Health is still failing to monitor autism, despite a 1997 recommendation of the House of Commons Health Committee to do so. Disgracefully, parents in Scotland, Tyneside and London whose children have developed inflammatory bowel disease have been told that no such disease exists (to concede otherwise would give credence to Andrew Wakefield's work) and that therefore they are suffering from Münchhausen's Syndrome by Proxy - there have even been threats to take very sick children into care. To paraphrase Jeremy Paxman: if the triple vaccine is safe (and I reiterate - it might be), then why are these bastards lying to us?

The truth is that none of us, not Yvette Cooper, not Tony Blair, not me, knows whether there is a link between MMR and autism, and unless the Government and medical establishment are mature enough to allow proper, independent research, then we will never know. I suspect that in the end they will be forced to treat us like grown-ups and give us the worst-case figures so that we can make up our own minds; in the meantime we are faced with a potential measles epidemic and an actual epidemic of autism. Even Sir Liam Donaldson, the chief medical officer, referred to a fourfold increase, but other, respectable, sources are quoting figures a lot scarier than that.

How long are we going to make parents of autistic children wait for a diagnosis, when all the evidence shows that early intervention is vital? How are we going to educate all these autistic kids, when there are currently 76,000 of them fighting for 3,000 specialist school places, and when we know from experts that it is only specialist education that can make any difference? Who is going to treat the inflammatory bowel disease, now that one of the only people in Britain who knows anything about it has been forced out of his job at the Royal Free?

And how am I going to get out of paying this parking ticket? Until Yvette Cooper and her colleagues start to address these questions (although she can leave the one about the parking ticket until later, if she likes), then parents will remain angry. And at the moment, an angry parent is a dangerous parent, someone who will fire shots into the panicking crowd, simply because he or she has nothing to lose. Hey, Yvette - would you like to talk?

The MMR debate
10.02.2002: Autism screening for all children to end MMR fears
10.02.2002: Focus: An issue of trust
10.02.2002: MMR: Your questions answered
10.02.2002: Jon Henley: 'This is just not an issue in France...'
10.02.2002: "I'm simply bemused": Observer writers on their MMR decisions
10.02.2002: Andrew Rawnsley: My MMR dilemma - who can we believe?
10.02.2002: Nick Hornby: Why parents are angry about autism
10.02.2002: Leader: Dogma on MMR does not work

Live online: MMR debate, Monday 11 February
The MMR debate: put questions to doctors from both sides
MMR talkboard: have your say here

Useful links
23.12.2001: To jab or not to jab? MMR explained
Downing Street: MMR advice
Department of Health: MMR advice
MMR evidence from Public Health Laboratory Service
How safe is MMR? BMJ debate
JABS: Support group for vaccine damaged children
Guardian Unlimited Weblog:More on MMR

Special reports
Special report: medicine and health
SocietyGuardian.co.uk: Public health special

From the archive: Blair MMR row, round one
23.12.2001: Focus: No 10's fear of needles
23.12.2001: Blair: we have never discussed our children's health
23.12.2001: Mary Riddell: Come clean, Mr Blair
23.12.2001: Rod Liddle: Privacy, or hiding the truth?


ALL INFORMATION, DATA, AND MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR GENERAL INFORMATION PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE KNOWLEDGE OR OPINIONS OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED AS PROVIDING MEDICAL OR LEGAL ADVICE.  THE DECISION WHETHER OR NOT TO VACCINATE IS AN IMPORTANT AND COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU ALONE, IN CONSULTATION WITH YOUR HEALTH CARE PROVIDER.