MMR does not cause autism!
Jan. 9th, 2007 06:55 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
livI've been annoyed for a long time about the MMR autism scare. Well, annoyed is an understatement; I'm between furious and thoroughly discouraged about humanity at the combination of scientific ignorance and sensationalism which has created a "controversy" where none should exist. The artificial controversy is not just a matter of academic interest, it has serious medical consequences. It has led to an epidemiologically significant proportion of parents refusing to let their children be vaccinated against measles, mumps and rubella, which means these diseases are becoming prevalent again. That means children are at risk of permanent disability and death from a cause which is almost completely preventable.
I can't do anything about this, not even on the small scale where my actions would have any effect anyway. Because the story has been presented as a controversy, anything I might say about the topic is taken as taking one side in a polarized debate. There are plenty of people who feel equally passionately that MMR might cause autism, so people can pick either view based on who has the strongest arguments or the most emotive rhetoric. But the prevalence of the wrong view here is lethal.
Just this week, I was following links from LJ to news stories, and I learned that the whole idea of link between the triple vaccine and autism was invented by unscrupulous lawyers. It's not only that the original study which showed possible evidence of a link was over-hyped to a ridiculous point, because people don't understand about sample sizes. It's that the original study was fabricated, because the charlatan calling himself a scientist was paid to generate data that would be favourable to the legal case so people could make money by suing health providers.
I'd heard rumours about the payments before, but I'd interpreted it charitably as someone who had a particular pet theory and was willing to take money from whomever would provide it to pursue an unpopular hypothesis. But now it seems the unspeakable scum who "funded" the original "study" even went as far as paying the referees to accept a weak paper. So, not just one person but quite a number of people were willing to pervert legal justice, and scientific integrity, and expose the whole population, especially children, to unnecessary and potentially lethal risk. In effect, they were willing to kill. And for what? Not for career advancement, not for self-aggrandisement, not even because of getting overly attached to the first interpretation of preliminary data (though I think the prime culprit probably had those bad motivations as well), but for money.
I suppose one advantage of this thoroughly nasty business is that it might be obvious enough to make people belatedly wake up and realize they have no reason to be scared of the MMR vaccine. If the causing autism thing was obviously faked, and the people behind the fake are obviously, melodramatically evil, that's perhaps easier to grasp than the idea that the original data possibly suggested a link but later, more detailed analysis showed that the evidence doesn't stand up. With all the controversy and its wide-ranging legal and medical rammifications, the absence of a measurable link between the vaccine and autism has been demonstrated more thoroughly than just about any other attempt to prove a negative in all of scientific history. It's a pity that so much research effort has gone into refuting something which should never have seen the light of day in the first place, but it is absolutely and convincingly refuted.
One part of the problem is that detailed scientific evidence against the original shock story isn't headline-grabbing. It's much more romantic to believe in a few brave souls fighting against the evil medical establishment to protect children from the nasty vaccine, than to appreciate that the original data doesn't hold up to scrutiny. But if it was all fabricated in the first place, by vile scum who care more about financial gain than human life, it's understandable and not at all surprising that subsequent work showed it was baseless.
So, a combination of scientific forgery and unscrupulous media reporting led to a lot of people believing that being vaccinated against measles, mumps and rubella simultaneously would cause autism. As a result, about 1 in 5 of the children who would otherwise have been vaccinated in the last ten years have not been vaccinated. This means that the population immunity is below the critical threshold; unfortunately, this means that even those who are vaccinated are at increased risk because no vaccine is perfect, so you need a big enough proportion of the population to be vaccinated so that the disease can't spread. At least one child has died of measles in that time; maybe he would have died anyway, but no child in the UK died of measles in the decade before the controversy broke.
I think the problem goes deeper than just people holding false beliefs about the vaccine, though. Part of the issue is that people think that measles, mumps and rubella are just minor ailments that lead to nothing worse than feeling miserable for a few days, whereas autism is this big horrible scary thing. I think it's important to emphasize that autism is neither infectious nor lethal, unlike measles and mumps. And that in turn is part of the stigma against mental illness and intellectual disability, which leads to horrors like this. (Thanks to![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
rho, for making me despair of humanity even more than when I started writing this post.)
I can't do anything about this, not even on the small scale where my actions would have any effect anyway. Because the story has been presented as a controversy, anything I might say about the topic is taken as taking one side in a polarized debate. There are plenty of people who feel equally passionately that MMR might cause autism, so people can pick either view based on who has the strongest arguments or the most emotive rhetoric. But the prevalence of the wrong view here is lethal.
Just this week, I was following links from LJ to news stories, and I learned that the whole idea of link between the triple vaccine and autism was invented by unscrupulous lawyers. It's not only that the original study which showed possible evidence of a link was over-hyped to a ridiculous point, because people don't understand about sample sizes. It's that the original study was fabricated, because the charlatan calling himself a scientist was paid to generate data that would be favourable to the legal case so people could make money by suing health providers.
I'd heard rumours about the payments before, but I'd interpreted it charitably as someone who had a particular pet theory and was willing to take money from whomever would provide it to pursue an unpopular hypothesis. But now it seems the unspeakable scum who "funded" the original "study" even went as far as paying the referees to accept a weak paper. So, not just one person but quite a number of people were willing to pervert legal justice, and scientific integrity, and expose the whole population, especially children, to unnecessary and potentially lethal risk. In effect, they were willing to kill. And for what? Not for career advancement, not for self-aggrandisement, not even because of getting overly attached to the first interpretation of preliminary data (though I think the prime culprit probably had those bad motivations as well), but for money.
I suppose one advantage of this thoroughly nasty business is that it might be obvious enough to make people belatedly wake up and realize they have no reason to be scared of the MMR vaccine. If the causing autism thing was obviously faked, and the people behind the fake are obviously, melodramatically evil, that's perhaps easier to grasp than the idea that the original data possibly suggested a link but later, more detailed analysis showed that the evidence doesn't stand up. With all the controversy and its wide-ranging legal and medical rammifications, the absence of a measurable link between the vaccine and autism has been demonstrated more thoroughly than just about any other attempt to prove a negative in all of scientific history. It's a pity that so much research effort has gone into refuting something which should never have seen the light of day in the first place, but it is absolutely and convincingly refuted.
One part of the problem is that detailed scientific evidence against the original shock story isn't headline-grabbing. It's much more romantic to believe in a few brave souls fighting against the evil medical establishment to protect children from the nasty vaccine, than to appreciate that the original data doesn't hold up to scrutiny. But if it was all fabricated in the first place, by vile scum who care more about financial gain than human life, it's understandable and not at all surprising that subsequent work showed it was baseless.
So, a combination of scientific forgery and unscrupulous media reporting led to a lot of people believing that being vaccinated against measles, mumps and rubella simultaneously would cause autism. As a result, about 1 in 5 of the children who would otherwise have been vaccinated in the last ten years have not been vaccinated. This means that the population immunity is below the critical threshold; unfortunately, this means that even those who are vaccinated are at increased risk because no vaccine is perfect, so you need a big enough proportion of the population to be vaccinated so that the disease can't spread. At least one child has died of measles in that time; maybe he would have died anyway, but no child in the UK died of measles in the decade before the controversy broke.
I think the problem goes deeper than just people holding false beliefs about the vaccine, though. Part of the issue is that people think that measles, mumps and rubella are just minor ailments that lead to nothing worse than feeling miserable for a few days, whereas autism is this big horrible scary thing. I think it's important to emphasize that autism is neither infectious nor lethal, unlike measles and mumps. And that in turn is part of the stigma against mental illness and intellectual disability, which leads to horrors like this. (Thanks to
rho, for making me despair of humanity even more than when I started writing this post.)
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
(no subject)
Date: 2007-01-09 08:20 pm (UTC)I've always been suspicious of that wacky anti-immunisation trend since I know at least traditionally, Germany isn't prone to just fall blindly into the hands of The Evil Pharmaceutical Companies and thought people were insane for overreacting to some tiny chance while neglecting the very real and present threat from MMR, which after all can do severe, the most severe damage.
I'll link to this.
(no subject)
Date: 2007-01-10 07:50 am (UTC)Sorry to be pedantic, but I'm getting quite a lot of strangers visiting this post, and I want to make sure that the message is clear. When you say that there is a threat from MMR, you mean that the actual diseases, measles, mumps and German measles / rubella, are dangerous. You don't mean that the MMR vaccine is dangerous, because the whole point of this post is that it's not.
(no subject)
Date: 2007-01-10 07:03 pm (UTC)(no subject)
Date: 2007-01-10 07:11 pm (UTC)(no subject)
Date: 2007-01-10 07:14 pm (UTC)Hadn't even considered that people might make a mistake due to that abbreviation's common or uncommon usages, what with being German. Hey, I blame being half-asleep.
(no subject)
Date: 2007-01-10 07:09 pm (UTC)(no subject)
Date: 2007-01-09 08:28 pm (UTC)but whereas autism is this big horrible scary thing. I think it's important to emphasize that autism is neither infectious nor lethal, unlike measles and mumps.
Autism + other ASD can be big horrible scary things. No, it's not infectious, nor usually lethal (ASD diagnosis increases by four-fold the chances of depression + there's a higher than normal suicide rate amongst people with ASD anyway), but it will have a life long impact on someone's life. The extent of the impact varies considerably (far more so than with measles, mumps & rubella where complications are relatively rare).
Those "relatively rare" complications:
Date: 2007-01-09 09:26 pm (UTC)That's from the first google hit for "rubella," at http://www.kidshealth.org/parent/infections/skin/german_measles.html/. Mental retardation, malformations of the heart and eyes, and deafness have life-long impacts on the person they affect.
That's the US National Institutes of Health, who I'm still prepared to trust on this (though not on anything to do with sex or contraception, in these parlous times): http://www.nlm.nih.gov/medlineplus/measles.html/.
(no subject)
Date: 2007-01-10 08:10 am (UTC)At the same time, there are many autistic people who see autism as not a disease, but as a part of who they are, something that makes the way they process the world different from the majority. That's a view I have real respect for, and whether or not you accept it, it is certainly the case that ableism and discrimination against people with mental differences makes any objective problems that autistic people may have far worse. The sensationalist news stories about how tragic and devastating autism is don't help with that problem, especially when they see autism not only as an illness but as something which completely negates a child's personality and even humanity. Do read some of the examples at the link I gave; I don't think they are extreme, I think they are very typical of a lot of discourse about autism, particularly in the context of the vaccination scare.
You're coming from a perspective of providing services and educational support for kids with special needs. That's a very useful contribution (and I should make it absolutely clear that I am not against lawyers in general, just morally corrupt ones!), but it's only part of the picture.
(no subject)
Date: 2007-01-10 09:08 am (UTC)(no subject)
Date: 2007-01-10 09:18 am (UTC)(no subject)
Date: 2007-01-10 08:15 pm (UTC)You are absolutely right that there is a great variation in how severely someone's life may be affected by the range of conditions defined as autism. And with severe autism, as with many other disabilities classified as severe, there are often problems with communication. It's wrong, dangerously wrong, to assume that because someone can't speak they don't have any ideas, and certainly can't possibly be happy with the way they are. Almost all people can manage some kind of communication, given enough patience and the appropriate physical assistance if relevant; humans are a communicating species.
From a purely rhetorical pov, you are right that a person who can not communicate (perhaps because they have never had the support they need to develop alternative methods of communication) literally can not express the idea that they are happy the way they are. But it's more unreasonable to assume they are not in the absence of any evidence, than to at least allow they possibility that they might be. The link I gave you in my earlier comment provides a number of examples of autistic people who have severe limitations in their ability to communicate in standard ways, who have found ways to express ideas, including the idea of neurodiversity.
The idea that autism makes someone is part of the damaging stereotypes around autism; autistic people, even severely autistic people, absolutely can connect with other people, given the chance. The assumption that they can't means they often don't get that chance, because what they often can't do is interact in the normal, socially expected ways.
The requiring full-time care is a red herring. People are really horrified by the idea of an adult who needs help with such basic things as eating, dressing and toileting, but as I'm sure you realize, that kind of thing has no bearing on someone's value as a person. It doesn't seem to have much bearing on how a person feels about disability politics and how content they are with their own life, either, at least anecdotally.
Part 1
Date: 2007-01-11 02:16 pm (UTC)My comment was meant to be within the mould of 'it is reasonable for a parent to prefer that their child not develop condition X' rather than 'people with condition X are less valuable as people and therefore should not be treated equally'. I do not think that the two statements are equivalent.
For a start, even if the parent were thinking only of what were in the best interests of their children, I don't think the fact that someone, or the majority of people, with condition X says 'I'm glad I have condition X' invalidates their feelings that their child would be better off if they didn't have condition X. Just thinking of myself, I have a whole range of personality traits and experiences that I will freely admit are not the sort of things one would hope a child would have. However, I personally would not like to be 'cured' of these things as they make up who I am and, whatever Freud may say, people have quite a strong urge to avoid self-annihilation. They is a big difference between taking away from somone a condition that has become a pillar of their self-identity and attempting to prevent a baby from developing a the condition in the first place.
In addition, the quality of life of a person with severe autism is likely to be severely affected by the quality of the care they recieve. Unless a parent is extremely wealthy, there is a severe limit to the extent that they can control the quality of care that their children will recieve, particular after the parent dies. Even if a parent is only interested in their childs happiness and believes that people with autism are just as happy as people without autism, they may still prefer for a child to not have severe autism because they don't trust that the required care will be available for an autistic child throughout their life.
(no subject)
Date: 2007-01-16 09:54 am (UTC)All your arguments here make a lot of sense and are not at all ableist. I overreacted to your comment, I know. Partially, I had in my mind the thought that you would basically accept the disability rights perspective, and I didn't need to argue it from first principles with you. Thanks again for this fruitful discussion.
Part 2
Date: 2007-01-11 02:16 pm (UTC)When I was writing that comment I was thinking of a friend of mine's cousin who has severe autism and learning difficulties and doesn't communicate. Maybe that's due to her learning difficulties or her level of care. Given that that is the reality of her life right now and her parents can't do anything to change that, I think it would be very understandable for them to wish they could go back in time and prevent her from developing the conditions if they could have.
It just seemed to me from what you were writing that anyone wishing to prevent their children from developing autism was just an ablist bigot. Perhaps your position was that, if one is faced with two options and:
-option A results in a X% chance of death and option B results in a Y% of autism
-X is greater than Y
-a person chooses A over B
they are implicitly stating that they think death is preferable to autism. However, this would require people to be a lot better at probability than they are.
I don't think a single person who didn't vacinate their children thought that they might die as a result. Once a probability gets below about 1% people don't tend to differentiate between 1% and 0.00001%. I figure that's why lots of leaflets on contraception just list them as 'more than 99% effective' even though more accurate statistics are available. So in the minds of the people refusing the vaccine the choice had become small chance child has a nasty fever for a week and gets better (because that's what they think measels is like) and small chance child becomes severely autistic. By the time they've warped the choice they're facing into that, it's easy to see why they didn't vaccinate.
(no subject)
Date: 2007-01-15 12:00 am (UTC)(no subject)
Date: 2007-01-16 10:01 am (UTC)(no subject)
Date: 2007-01-09 08:59 pm (UTC)(no subject)
Date: 2007-01-10 08:35 am (UTC)The full details of the scandal are pretty recent, last week's news. There have been rumours since 2004 that money from the legal fund changed hands, but the fact that people with a vested interest funded the research doesn't necessarily invalidate the research. Now we know the amounts involved and who was paid (I can't get over that they paid the referees to accept a bad paper!), it's much more clear-cut that it was actual direct corruption rather than just weak science.
autism
Date: 2007-01-09 09:39 pm (UTC)Best wishes
http://whitterer-autism.blogspot.com
(no subject)
Date: 2007-01-10 08:36 pm (UTC)I don't want to start an argument with you when I've only just met you, but I'm afraid that the reason there is a debate within the autism community is exactly the same as the reason why there's a debate in the wider community: bad and science, media sensationalism and scientific illiteracy. For questions like what services autistic people need, or what it's like to be autistic, I would definitely give more credence to people who have direct experience. But when it comes to the question of whether the MMR vaccine causes autism, the people who know what they're talking about are the virologists and epidemiologists, not autistic people and their caregivers.
There are many things that are worth debating, and I pride myself on accepting views that differ from my own. But there should never have been a debate in the first place about whether the MMR vaccine causes autism, and even if there had to be a debate, it has now been conclusively resolved.
Autism
Date: 2007-01-12 09:50 pm (UTC)Firstly, I 'found ' you as I have a google alert set up for 'autism/autistic' so that anything that's going around I can zoom in on. It's very easy to get 'cut off' from the real world / too introspective / out of touch if you're not vigilant. I especially like the forums where young people 'talk' to each other about issues that concern them [now that I've overcome the feeling of being a voyeur, or whatever he online equivalent is?] as it helps me anticipate the road ahead, what I should be concentrating on and what really doesn't matter all that much, even if it seems like it might be important right now.
I concur on the issue of the MMR but look at the sites and the debate is still on. It's very frustrating, especially as anyone 'new' [presumably most often a parent of a newly diagnosed child] is usually so desperate and overwhelmed that they make easy pickings for the unscrupulous. Now if you'll excuse me, some 'bodies' are in need of my attention.
Cheers dear
(no subject)
Date: 2007-01-16 10:07 am (UTC)(no subject)
Date: 2007-01-09 09:50 pm (UTC)There was something I was trying to put my finger on. Is it possible that one aspect of the hysteria is that people (including me) always feel worse for doing something bad than letting something bad happen, so even if the trade off is a good one hate the idea of using a vaccine which could cause a disease, if the benefit isn't immediate.
(Of course, there are lots of other reasons we can all do this, ranging from looking for backdoors round received wisdom to a propensity for a good emotional story to believe in.)
(no subject)
Interesting point about why people don't vaccinate. In pure game theory terms, the best for an individual child is not to be vaccinated (because any vaccine carries some level of risk) but for everyone else to be protected so they benefit from herd immunity. I doubt that many people actually make that calculation in cold blood, although there is at least one example in the comments to this post.
But yeah, there could be some productive thinking about how people perceive risk, immediate versus long-term, risks to the people they're close to versus general population risks. The MMR story is very muddied by the media hysteria over a completely non-existent risk, but there are always a few people who refuse other vaccines in the absence of the big scare story.
(no subject)
Date: 2007-01-11 04:12 pm (UTC)In pure game theory terms,
Eek! I (very unusually) hadn't thought in game theory terms. If everyone else has the vaccine, your chances of contracting the disease are pretty low, so not vaccinating could make sense. Which is a depressing way of looking at it.
OTOH, if the percentage falls, it'd be better to be vaccinated, so it's probably worth it even from a strict personal maximising perspective.
(no subject)
Date: 2007-01-10 02:39 am (UTC)I have a (former) friend who - despite being an otherwise intelligent, rational person - decided not to immunise her children. After repeated discussions, we finally got to the root reason - enough other people do it, so she felt her kids were protected by society.
That's right. Don't bother doing the right thing because you can leave it up to other people who are.
The friendship ended shortly after our kids had a playdate. My daughter wasn't old enough to have had her MMR vaccination yet; hers was, but wasn't immunised. When she rang me to say that *HER* daughter had been exposed to measles, and had therefore exposed mine, I was so angry I could not speak.
Fortunately, that exposure turned out to be a false alarm and my daughter was not harmed. I was willing to continue the friendship, although I was not willing to allow my daughter to play with hers until mine HAD been immunised and was, therefore, protected. She couldn't deal with that.
(As an aside - at that time, in Australia, new parents were entitled to two government payments; the first at birth, the second at 18 months. The second was called the "immunisation allowance". My kids, despite being fully immunised, were not eligible for the immunisation allowance due to our income. Her kids, despite NOT being immunised, were. Go figure.)
Wow, 8 years on and I am STILL angry.
(no subject)
Date: 2007-01-10 10:10 pm (UTC)(no subject)
Date: 2007-01-11 01:04 am (UTC)Me: "Because other people immunise their children"
Her: "Well, yeah."
::rolls eyes::
(oh - and I should have said - I followed the link from
(no subject)
Date: 2007-01-12 12:51 am (UTC)My father did choose to not have the third of the five of us vaccinated against smallpox. For the first two, he did. With the third, he said the risk of smallpox was now so small that the vaccination was a bigger risk. That does somewhat play into the same thing. Although by the time the fourth and me were ready for vaccinations, they didn't do smallpox vaccinations anymore - so he was just a little early with the trend. It's not like skipping MMR, where we aren't close to wiping them off the face of the Earth.
On a side note, I really, really want a tetanus booster. I'm not protected. I've asked twice, each time I've been told that there is a shortage and I can only have one if I have active need. Eventually I'll try again. I'll be very upset though if I die of tetanus.
(no subject)
Date: 2007-01-10 09:19 am (UTC)(no subject)
Date: 2007-01-10 10:13 pm (UTC)(no subject)
Date: 2007-01-12 12:52 am (UTC)(no subject)
Date: 2007-01-10 12:14 pm (UTC)(no subject)
Date: 2007-01-10 11:04 pm (UTC)