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Autism: The Musical

by Eva Amsen

Last week at the video rental place I saw a documentary called “Autism: The Musical”. I’ve been watching a lot of documentaries lately, and most recently I’ve also been interested in the way they are made, so I watch them to notice where the camera is, where the interviewees are looking towards, how the sound is cut, how the story is told, etc. I’m especially interested in how music stories are told, so I picked this up. At the counter, the girl standing next to me said “I watched that last week, it’s great!” so it came with a good recommendation, too.

The documentary is about a group of autistic kids who make and perform a musical. I was watching this, as I said, to look at some editing things. There were some confusing cuts that I felt left out some information, but one thing I did really like was that they introduced the kids before the parents. One of the kids was quite entertaining: completely obsessed with dinosaurs he was a walking, loud, noisy, encyclopedia. After several minutes of getting to know this kid, and seeing him with his mother, you finally find out that it’s the son of Stephen Stills, of Crosby, Stills, Nash, and Young.

And here is where the science part comes in: I tried to watch this as a bit of a distraction from science things, but I really do always notice science in everyday topics, and here it was. Stephen Stills was the only parent in the documentary who did not blame vaccinations, but talked about genetics. He joked about it a little bit, saying that he recognized some of his own traits in autistic kids. I found a clip of this very segment online. You can also see his wife talk about a bunch of non-genetic stuff, including vaccines, and she was not the only one that mentioned vaccines.

(Hit play, then pause, wait for everything to load, and then watch. It’s bumpy otherwise.)

Michael Nestor talked about Jenny McCarthy on his blog a while ago, and I suggested that what we needed was not scientists stepping up, but celebrities who actually say that it’s not the vaccines. Well, there he is: Stephen Stills is also a parent of an autistic child, and he says it’s genetic.

I realized, watching this segment, that parents probably prefer to blame vaccines because it’s something external. Stills sounds almost apologetic about the fact that it’s genetic, because it involves his genes.

Because I’ve never really looked into the whole vaccine issue much, I went on PubMed after watching the documentary to do some research. It seems that there was only one publication in the late nineties that linked autism to the MMR vaccination. Meanwhile, 12 of the 14 authors on that publication have retracted their views and said that the data were not significant enough to draw conclusions (for the lay audience, that means: “We were wrong”) What’s more, there have been MANY publications by many different groups from all around the world who show in many different ways that there is no link between vaccines and autism. Many recent articles versus one old one is a no-brainer: obviously, the huge amount of data discrediting the link is the side that’s right. Why isn’t this clear yet in the non-scientific media?

Journalism doesn’t work like scientific publication. Academic reviews look at the bulk of scientific literature, and say “someone once said X, but many people since have shown that not-X.”. Newspapers, on the other hand, publish an article when a press release comes out for one journal article. So imagine: the vaccine/autism paper came out, and that was interesting, so they jumped on it and published it. Later, a paper came out and discredited it. Maybe this ended up in a newspaper, too, but it was just one opinion against the original article. Many other papers came out, all saying the same thing: there is NO link between autism and vaccines. But to a newspaper, that is not interesting at all. Many people all saying the same is not news. We already published an article about people who said there was no link. It’s not new and exciting to publish all the other ones!

To mainstream media, the odd one out is the “Man Bites Dog” story that’s interesting and publishable. That’s what people read over and over, and what ends up in public knowledge.
It’s not worth mentioning that hundreds of scientists agree on something that’s not exciting news – people want the shocking story, that later turned out to be false (but they don’t care)So, two reasons why the vaccine myth persists:

So, two reasons why the vaccine myth persists:
– It’s easier to blame someone else than your own genes
– It’s more exciting to publish a shocking story than the majority opinion that discredits it.

One story that shocked me when I read the PubMed archive, and that thankfully did make the regular media as well, was that because of this stupid vaccine article parents are refusing vaccinations for their kids. Entire programs have been set up in which doctors and nurses have to talk to the community to explain over and over and over again that the initial article was false, and that the vaccines are safe, and please protect your child and save us all from an epidemic. I’d never even considered that this was happening. All the time and money wasted on community outreach trying to set straight one publication…

(I will add some more links to this later. I need to return the DVD now and go to a Christmas concert rehearsal.)

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6 comments

Cath Ennis November 18, 2008 - 9:20 PM

Great post Eva, and a great dissection of how the popular media approach science. There have been concerns around here lately about a “mumps outbreak”:http://www.cbc.ca/canada/british-columbia/story/2008/03/13/bc-mumps.html, caused in part by a religious community not immunising their children. Since some people can not be vaccinated (weakened immune system etc), they rely on herd immunity for protection, but we are starting to slip below the vaccination levels needed for that herd immunity. I have had this argument with a few anti-vaccination parents I know, with little effect…

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Ian Brooks November 22, 2008 - 5:52 PM

Excellent post! Ben Goldacre, of Bad Science fame, lays into the media a great deal on this issue. He contends that its wrong for us (scientists) to place so much of the blame on Andrew Wakefield, lead author of the autism/vaccine paper. The media took the ball and ran with it, and the community didn’t speak up till it was “too late”. The science is bad but we can’t stifle research even if it is shonky. *We* have to help the public understand the issues.
Herd immunity is plummeting, and now kids (and adults) are beginning to die from measles and mumps. It’s an absolute travesty and a tradjedy.
In general parents need an external source to blame for their child’s condition. If it was the vaccine then it might be curable. If it’s their genes then there’s no one to blame, or worse, it’s the parents fault. And this is a psychological issue that must be dealt with. Repeatedly ramming epidimeological meta-analyses down parents throats *won’t* convince them that they need to vaccinate their children, and it will have little effect on preventing awful things like unlicensed chelation, where kids are fed massive doses of EGTA etc., because “the heavy metals in the child’s blood are causing the autism”.
*We* know this is bollocks, but *we* have PhDs and the like. They don’t. They’re ill-educated in the nuances of scientific analysis and very very scared and angry and frustrated.
My girlfriend is a Music Therapist working with children with autism here in Memphis. I’ve volunteered to go to PTA meetings and talk about the science behind all this, but apparently one of our senior scientists (working on autism/Angelman syndrom) had already been there trying to recruit subjects for his clinical trials. He went in heavy handed and essentially told them they were idiots and should listen to him because he knew best. The damage has been, so far, irrepearable. And I don’t think we can blame the parents for that.

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steffi suhr November 22, 2008 - 9:33 PM

Ian:
_We know this is bollocks, but we have PhDs and the like. They don’t. They’re ill-educated in the nuances of scientific analysis and very very scared and angry and frustrated_
The irony is that most of the parents refusing to have their kids vaccinated are well-educated. I remember reading this somewhere else at one point, but Maxine just pointed me to “this”:http://www.nature.com/ni/journal/v9/n12/abs/ni1208-1317.html Nature Immunology editorial a few days ago (unfortunately, that also doesn’t have a reference, but I’m sure we can find one – I’m just too tired).
Eva, you’ve probably come across this 2007 “article”:http://www.guardian.co.uk/education/2007/jul/03/highereducation.news in the Guardian in your diggings. It sums that aspect of science journalism ethics aspect up quite nicely.

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Austin Elliott November 22, 2008 - 10:12 PM

The nonsense peddled to parents about vaccines and autism really makes me very angry. This is particularly because the anti-vaccine nuts have to “sell” the parents _guilt_ first (since the parents chose to have their kids vaccinated) in order to subsequently sell them the credo –
“It was the vaccines! THEY (Big Pharma or the Govt) LIED to you!”
And then the solution:
“Try our Special Cures-Autism Snake Oil Gluten-Free diet”. (or chelation, or secretin, or any number of other idiotic things).
Given what the parents are coping with, this selling them their own guilt strikes me as a truly evil thing to do.
It is also notable that a whole rag-bag of other nonsensical conspiracy theories about science and medicine being tools of oppression are sold together with the “vaccines are poisons” idea – check the demented “JABS website”:http://www.jabs.org.uk/, and particularly its forums, to see just how bad it can get.
I broadly agree with Ben Goldacre about the complicity of the media in the MMR disaster. One thing that is noticeable is that a lot
of the journalists who wrote (and still write) about this are “lifestyle” or “parenting issues” types, with zero knowledge of science or medicine, as already noted. Another thing is that some of the most persistent are sort of serial conspiracy nuts, who are determined to see Govt cover-up, or “Evil Pharma” conspiracy, and will not be dissuaded of this no matter what. Melanie Phillips is the most famous of this ilk, but there are several others, which is why the story still re-surfaces in the British press from time to time.
For a satirical / polemic take on this, try “here”:http://draust.wordpress.com/2008/06/04/who-needs-facts-these-vaccine-conspiracy-pieces-write-themselves%E2%80%A6/

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Eva Amsen November 22, 2008 - 11:41 PM

Interesting comments, guys!
This was actually the first time I gave it all a serious thought. Before, when I heard the “vaccines cause autism” myth I always just wrote it down to “people are stupid” and I tend to ignore stupid people, so I never really checked what was going on until I saw this documentary.
I realize I never added the links. I did return the DVD and go to rehearsal, though.

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Jim Kramer May 15, 2009 - 5:34 PM

His wife talks about anything but genetics, because she insisted on giving birth to another child after Henry was diagnosed. Now she has an ADHD brother to Henry’s Aspergers. A very sad, self-absorbed, and somewhat delusional lady there.

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