Action For Autism

NAS agrees, MMR does not cause autism

Even though the controversy about MMR and autism originated in the UK our National Autistic Society has always tried to steer clear of the controversy on the grounds that we are not a medical charity. This used to be our position. You can still find it in a forgotten corner of the NAS website.

National Autistic Society position statement
The National Autistic Society (NAS) is keenly aware of the understandable concerns of parents surrounding suggested links between autism and the MMR vaccine. The NAS urges continued efforts on the part of the Chief Medical Officer, supported by further authoritative research, to put these matters beyond doubt and allay any remaining public concern.
While there is still no conclusive evidence, it is crucial that health professionals listen to parents’ concerns and respect their views as the experts on their individual children. Some parents experience a lack of sympathy and understanding in the healthcare system on medical issues related to their child’s autism. This urgently needs to be addressed to ensure equal access to services.

But now the NAS has come off the fence. Our new statement begins:

The National Autistic Society (NAS) is keenly aware of the understandable concerns of parents surrounding suggested links between autism and the MMR vaccine. We recognise that the weight of epidemiological evidence indicates that there is no statistically significant link between the MMR vaccine and autism.

The statement could be stronger. To my knowledge there are no epidemiological studies showing a link between MMR and autism. As well as the epidemiology the clinical studies also stack up against the hypothesis. Hornig et al (2008) found

strong evidence against association of autism with persistent MV RNA in the GI tract or MMR exposure.

Baird et al (2008) found

no evidence of a differential response to measles virus or the measles component of the MMR in children with ASD, with or without regression, and controls who had either one or two doses of MMR.

D’Souza et al (2006) found

no evidence of measles virus persistence in the peripheral blood mononuclear cells of children with autism spectrum disorder.

Afzal et al (2006)

failed to substantiate reports of the persistence of measles virus in autistic children with development regression.

I can understand why the NAS has taken so long to adopt its new stance. Within the NAS some of our members have been vocal in their support of Andrew Wakefeld and the MMR connection. Others have been equally vocal in opposing the idea. In the beginning I was undecided. The ham-fisted way in which the government went about reassuring us that MMR was safe was unconvincing and many of us, myself included, were inclined to give Wakefield the benefit of the doubt. See Mike Fitzpatrick’s article MMR: why government reassurances won’t work for one explanation of this widespread mistrust.

Support for Wakefield was more prevalent among parents of autistic children than it was among the general public. Our experience of government agencies in relation to diagnosis and provision for our autistic children was often fractious and confrontational. We bitterly referred to our own triad of impairments, meaning Health, Education and Social Services. The second issue of the NAS sponsored journal, Autism, in November 1997 examined the experience of 1200 families seeking diagnosis and the frustrations and dissatisfaction expressed by many parents.

Little wonder then, that if it was Wakefield versus the Government many of us were willing to give him the benefit of the doubt. The NAS was alert to our anger and was keen to bring us together to campaign for improvements in services. It had no desire to enter a divisive argument over MMR. So what has changed?

First and foremost the campaign strategy has been successful. Things are changing. We are putting autism on the statute books. The government is consulting with the NAS on a strategy for adults. The emphasis is on providing those adjustments and accommodations that will enable autistic people to lead a full and active life as contributing members of society. If some people decide to jump ship over MMR they are jumping from a successful ship.

By way of contrast, one of Wakefield’s staunchest allies is Polly Tommey. Her magazine, The Autism File promotes the MMR connection and a host of biomedical “remedies” that are supposed to reverse vaccine damage and cure autism. Yet her actions belie her words. Her latest project is to set up rural enclaves providing sheltered living and employment for autistic adults away from society.

Second, autistic adults are taking a leadership role in our campaign strategy. When it was just about the parents, as it largely was a decade ago, a diplomatic fudge made some sort of sense. But you cannot fudge the issues with an autistic person. If the science says there is no connection then why don’t we say there is no connection?

Science can cut both ways. Autistic adults insist that they are not damaged or defective. They are different. They do not want research into the causes of autism if the agenda is prevention and cure. But most research into the causes of autism is carried out in order to facilitate prevention and cure.

We managed to fudge the vaccine question for years. That era is coming to an end. Now we face important debates about the nature of autism that cannot be fudged. Autistic adults are challenging the assumptions of scientists and posing their own questions. It is not altogether clear which is the most appropriate domain for these debates: science, ethics, moral philosophy? The three most important books on my shelves at the moment are:

Representing Autism - cultural criticism
Unstrange Minds; remapping the world of autism - anthropology
The Ethics of Autism - philosophy

I am sure that there are other, equally essential works and that they will likely transgress the boundaries of traditional autism disciplines like psychology and neurology. But there again, autistic people of my acquaintance are used to transgressing boundaries (and having their own boundaries transgressed). It is we neurotypicals who become defensive when we are taken out of our comfort zone.

We may be headed for uncomfortable times but I expect them to be far more productive and ultimately satisfying than the necessary but stultifying “autism wars” we have fought around the question of vaccines which should now be over.

September 19th, 2009 Posted by Mike | Andrew Wakefield, MMR, National Autistic Society, adults, science | 6 comments