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Andrew Wakefield apparently doesn’t understand the first rule of documentaries

27 Sep

Andrew Wakefield has tried to make a new career for himself as a film maker. He runs a website producing YouTube and Vimeo videos in which he describes himself as “director”. He also serves as presenter. He has finished his documentary on the murder of Alex Spourdalakis, even though his fundraiser fell well short of its goal (“$9,532USD RAISED OF $200,000 GOAL”).

If one follows the link above to the Mr. Wakefield’s Autism Media Channel, one will find a trailer for his “Who Killed Alex Spourdalakis” video. The narration talks about him being treated “in the words of witnesses…like an animal…” and at 26 seconds in one sees this image:

ThatWouldBeHisMother.

An image from that same video is also seen at about 20 seconds into the trailer.

As one who has followed various stories in the autism community I know that video well. I know it is taken from a video that made the news. A video about a completely different autistic.

Rotenberg

That video can be found on YouTube. It’s a story of an autistic at the Judge Rotenberg Center. I’m unaware of Mr. Wakefield speaking out on the treatment at JRC, by the way.

Perhaps in the full documentary Mr. Wakefield uses the Judge Rotenberg Video and tells his audience that it is a completely different story than the one he is discussing. But he doesn’t in the trailer. In fact, he cut the frame so that one doesn’t see where the video originated.

First rule of documentary film making–document. Don’t make things up. Don’t pull in film from some other event. The second rule would probably be: the film maker should not be part of the story. Mr. Wakefield applied his “Autism Team” to give their brand of support to the Spourdalakis family. I do question whether Mr. Spourdalakis would be alive today without that interference. Without the false hope. A question one can bet will not be addressed in an unbiased fashion, if at all, in Mr. Wakefield’s documentary.

I’ll note something else odd in that trailer. Immediately after that clip from the JRC video, one hears someone talk about “exorcism needed to be performed” and “he was possessed”. What that is all about is as much your guess as mine. Is this an example of the bad support Mr. Spourdalakis was getting before Mr. Wakefield? The type of support he got from Mr. Wakefield’s “Autism Team”?

Let’s consider another of Mr. Wakefield’s recent videos. In it, Mr. Wakefield presents a little more of the audio Brian Hooker claims are from phone calls he secretly taped with a CDC researcher. Let’s assume this is correct. At about 56 seconds in, Mr. Wakefield shows us a silhouetted figure gesturing while the recording goes on.

FauxThompson

Dramatic, isn’t it? Looks like Team Wakefield got someone from the CDC into a room, spilling secrets galore. It’s like a bad spy movie.

Looks to this observer like the man in the silhouette is an actor, not the CDC researcher. Why? Well, the face doesn’t look like the same person. The actor isn’t wearing glasses, the most recent photos of the researcher show him with glasses. The movements of the actor don’t really match the words in the audio. The audio quality is the same as in the phone call, but the actor doesn’t have a phone. Why would he be talking on the phone if he’s in a room? Why not use a recorder in the room? One can go on and on.

Perhaps Mr. Wakefield felt that this was artistic license: he didn’t have that video, so he used an actor in a recreation of events. Except that in real documentaries, one tells the audience when one is doing a recreation.

This last bit is from another of Mr. Wakefield’s recent videos. Not really relevant to the question of how does one make a good documentary. Instead this goes to one of the common complaints one hears from Mr. Wakefield’s supporters: whether he or they can be accurately called anti-vaccine. I rarely use the term, by the way. Here’s an image from another of Mr. Wakefield’s recent videos. It’s the picture of a pregnant woman holding a vaccine. The CDC logo is overlayed on her bare stomach and flames are burning from that logo. I cropped the image to remove the text imposed upon it.

WakefieldVideo

How should we classify such an action? Is this an example of the methods of the “pro safe vaccine” community (as they sometimes like to be called)?

Mr. Wakefield’s new career as a film maker is an interesting choice. Frankly, he has a lot to learn.


By Matt Carey

A “reanalysis” of the Price study on autism and thimerosal goes very wrong

25 Sep

A few years ago a study came out looking intently at the question of whether thimerosal in vaccines increases autism risk. That study, Prenatal and Infant Exposure to Thimerosal From Vaccines and Immunoglobulins and Risk of Autism, approached the question from many angles, including those suggested by parent advocates who believed (and still believe) that thimerosal was a driving force in the increased prevalence of identified autism in the U.S.. There were so many questions asked and so many results that the paper did not include all of those results. They just wouldn’t fit in a published paper, for one thing. So the authors put out additional reports including those extra tests.

One question they asked was whether the combination of exposure to thimerosal before birth and after birth would increase autism risk. This was an “interaction” model–how do these factors interact to create any possible autism risk. In their report the authors included not only the final result, but the sub-results. The pieces that they combined to calculate the final analysis.

Below is an example of one of those analyses. These are data involved in calculating how pre-natal thimerosal exposure combined with post-natal exposure up to 7 months of age might interact to create autism risk. The authors were kind enough to put boxes around statistically significant results–blue for results which indicate decreased risk and red for increased risk.

Abt-Autism-873

Now, let’s say I took the exposure by 7 months point and said, “Hey, look! Thimerosal exposure in the first seven months of life reduces autism risk by a factor of 4.28!” Well, that would be dishonest wouldn’t it? Taking a single sub result in an interaction model isn’t valid.

If I chose a different model from the same report I could quote a 1/OR (inverse odds ratio) of 113.59. A huge “protective” effect. Very dramatic. 113 times lower risk! But just as with the previous example, if I cherry picked this data point my own community would call me out for being dishonest. And they’d be right to do so.

I’m going to repeat that for emphasis because it isn’t obvious but it is very important: taking a single sub result in an interaction model is not valid. These sub results are only valid when incorporated into the full model and calculation performed.

Here’s something else that would be incorrect, and is more obvious: reporting only the results one wants to report. Ignoring the other results–especially the final result. In this case the final result is that the interaction of prenatal exposure and post natal exposure by 7 months does not increase autism risk. If I pulled out the sub result and said, “hey post natal thimerosal is protective” that would be misleading. If I ignored that red box you see with an odds ratio of 8.73, indicating a higher risk with thimerosal, that would be misleading.

Incorrect. Dishonest. Invalid. Take your pick of terms. It’s wrong.

So, what if I told you someone sifted through the report and cherry picked the results in the red boxes and was going around telling people “prenatal exposure to thimerosal increases autism risk by as much as a factor of 8.73. Would that be honest in your opinion?

Remember Brian Hooker?

If you don’t, he’s the guy who decided to publicize his paper with a race-baiting YouTube video claiming that a scientific disagreement among CDC researchers amounts to a new Tuskegee experiment? That scientific disagreement being whether to discuss one preliminary result or leave it out of a paper?

For some time now Mr. Hooker has been giving talks about how the data from the Price study shows an increased risk for autism and regression with thimerosal exposure. He doesn’t show exactly where he got the numbers he reports. But the number he likes to quote, 8.73, pretty much only appears in the figure above. He’s reporting on a sub result in an interaction model, which is not valid. He’s not reporting on the other sub results, nor the final result of the interaction model.

You can see him do this in his recent talk which has been posted to YouTube:

Let’s go into this in more detail, for those who would like to see that. His talk on this study starts at about 32 min in to the video. Mr. Hooker claims that he got the background reports from a “congressional request”. That’s around minute 37 in the talk. Sounds really impressive. Perhaps Mr. Hooker did get them through a congressional request. Which would beg the question of why he didn’t just download them from the web. The reports have been freely available since the Price Study was published. If one reads the Price study, as one would expect Mr. Hooker has done, references 10 and 11 are the reports, complete with url. These are online (here and here). Minor point I know, but it goes to show the amount of spin coming from Mr. Hooker and his team.

A few other points from his discussion of the Price study:

Mr. Hooker calls the Price study “fatally flawed”. He goes into great detail about why he feels this study is not valid. It’s a lot of hand waiving and his arguments are not valid. But it’s also problematical to spend a great deal of time tearing down a study to then rely on it for your own argument.

You see after he goes on and on about how he feels this study is not statistically valid, Mr. Hooker then appears to forget why the study is not, in his view, statistically valid and goes for the least statistically strong part of the study–that involving the smallest sub group.

He calls his discussion of the Price study a “reanalysis”. That’s not the word I use for skimming through publicly available reports and pulling out results that the authors put red boxes around. Again, it’s just spin.

At 36 minutes in you can see Brian Hooker claiming that the refusal rate was too high for the study to be valid (again, somehow that argument magically goes away for his “reanalysis”) and cheering and telling his audience to refuse to participate in CDC studies.

This is not the act of someone who wants to know the truth, of a true advocate, in my opinion. This looks to me like someone showing a strong bias towards the CDC. This advice goes counter to what I and my family need.

As an aside: if you watch Mr. Hooker’s full talk (don’t worry, it isn’t the full 8 hours of the video, just about an hour) you will see that it’s basically three parts. Part 1 is about his MMR paper with lots of references to the “whistleblower” (what whistle was blown again?). Part 2 is the Price study “reanalysis” (since when is reading someone else’s report a “reanalysis”). Part 3 is a discussion of tics with references to the “whistleblower” again.

Notice the pattern–there’s no discussion of the “whistleblower” in the discussion of the Price study. The area that is the most important to Mr. Hooker, thimerosal and autism, and no input from the “whistleblower”? Take a look at the Price study and answer this question: who is the second author on that study? That’s right, the “whistleblower”.

As I recall, Mr. Hooker claims to have been in contact with his “whistleblower” for about 10 months. It strains credulity to think that in that time Mr. Hooker never asked about the Price study. It further strains credulity to think that if Mr. Hooker had anything from the “whistleblower” to attack the Price study, he would hold it back.

Which is to say: I think he got nothing from his “whistleblower” on the Price study.

There’s a lot more wrong with Mr. Hooker’s “reanalysis”. But I’ll bring this back to this:

Abt-Autism-873

Yes, I admit it’s a bit obscure to know that you don’t pull a sub result out of an interaction model. It’s not so obscure that Mr. Hooker should be excused for doing it. But reporting the one sub result in the red box and ignoring 8 blue boxes? That’s not obscure. That’s just wrong.


By Matt Carey

Andrew Wakefield loses frivolous defamation lawsuit. To pay court costs.

19 Sep

In 2011 the British Medical Journal (BMJ) published a series of articles about Andrew Wakefield and his efforts to promote the idea of the MMR vaccine causing autism. Brian Deer has a list of links on his website: Secrets of the MMR scare. Here are just a few of those links:

Piltdown medicine – the missing link between MMR and autism

Editorial: Wakefield’s article linking MMR with autism was fraudulent

How the case against the MMR vaccine was fixed

How the vaccine crisis was meant to make money

The Lancet’s two days to bury bad news

Nearly a year after those were published, Andrew Wakefield took issue with his work being declared fraudulent and sued for defamation. Not in the UK, where the laws are very favorable to him. No, instead he chose his home state of Texas. Mr. Wakefield’s original suit was denied on the grounds that he did not have the standing to bring suit against the BMJ in Texas. Mr. Wakefield appealed. And lost.

In the recent appeal the judgment the court stated:

This is an appeal from the judgment signed by the trial court on August 3, 2012. Having reviewed the record and the parties’ arguments, the Court holds that there was no reversible error in the trial court’s judgment. Therefore, the Court affirms the trial court’s judgment. The appellant shall pay all costs relating to this appeal, both in this Court and the court below.

The full judgment can also be found online.

[Edit to add--see the discussion below. It is quite possible that I did not read this correctly]

If I read this correctly, Mr. Wakefield will be paying the costs the BMJ team incurred as well as his own. And, not only in the appeal, but also “in the court below”, which I read to be in the original suit. To put it simply–Mr. Wakefield may be in the position of paying the costs going back to when he first filed his defamation case.

The BMJ team and Mr. Wakefield’s team were four attorneys each. I would expect that Mr. Wakefield’s costs run into many tens of thousands of dollars. I would expect that the BMJ’s costs are likely even higher.

Which brings us to the obvious question: with a gamble of this size, what would this appeal have accomplished had Mr. Wakefield won? Well, for starters the BMJ team’s Anti SLAPP suit would have moved forward. Texas had just enacted Anti-SLAPP legislation at the time Mr. Wakefield filed suit (as an aside, if I recall correctly this is one of the blunders of Mr. Wakefield’s suit–waiting until after the new law was in place to file). SLAPP stands for Strategic lawsuit against public participation. The BMJ suit essentially puts for the idea that Mr. Wakefield’s defamation suit was a cynical attempt to stop the BMJ (and others) from voicing public criticism about Mr. Wakefield’s actions. Mr. Wakefield faced heavy penalties had the Anti-SLAPP suit gone forward and had the BMJ won.

This is the fourth time that Mr. Wakefield has attempted to “gag the media” as Mr. Deer puts it. And now the fourth time Mr. Wakefield has lost. One can never tell for certain, but it seems likely that Mr. Wakefield would have lost the Anti-SLAPP suit.

Let’s say Mr. Wakefield avoided an Anti-SLAPP judgment. He would have been able to bring his defamation case to court on the merits. Not on the merits of his scientific work, but on the question of whether the BMJ team could rightfully call his work fraudulent. A case the BMJ team certainly prepared for before going to press. And prepared to defend in the UK, where the laws are much more favorable to Mr. Wakefield. Which is to say, I suspect the BMJ felt strongly that they had checked all their facts closely and were well defended in any and all statements they made.

From my point of view, this defamation lawsuit was a vanity exercise by Mr. Wakefield. It got his name in the news. It may have slowed criticism of him for years. He got to look like a hero to his own community.

And he threw tens if not hundreds of thousands of dollars down the tubes in the effort. Mr. Wakefield heads the “Strategic Autism Initiative” which has the purported goal of funding autism research. Last I checked the majority of the money collected for the SAI went to salaries. Mr. Wakefield’s being the lion’s share. Be that as it may, Mr. Wakefield had an option a few years ago: fund autism research or fund this lawsuit.

Well, we see his choice. And the result. Sure there may be a further appeal. Take it to the Texas Supreme Court and delay some more. And run up more bills to pay.


By Matt Carey

When a child is killed by a parent the word “but” does not apply

13 Sep

Isabelle Stapleton is an autistic teenager. Thankfully we get to say “is” as, you see, her mother tried to kill Isabelle (“Issy” to her friends). The mother took her daughter to a remote area and lit two charcoal grills in her van so that the carbon monoxide would poison them both.

It has been reported that at times Isabelle has been violent. Keep in mind most of those reports seem to source back to the mother, the mother who tried to kill her. I’m not trying to downplay Isabelle’s struggles. Some in our community have very great needs.

“Dr. Phil” has interviewed Isabllele’s mother. People Magazine has a story up on it. Whenever these stories go online I cringe. Rarely are they handled well. And I cringe even more at the comments I know will be there.

One can just bet that many comments will take the form, “no one should kill her child…..but…..”

There is no “but” in this. No one should commit murder. No parent should kill her child. Full stop. Period. “But” does not apply.

Variants of this are “don’t judge her” and “until you walk in her shoes”.

“Judge” means to form an opinion.

For those who write that: the mother tried to kill her daughter. I will form an opinion about this–this is wrong. I don’t have to “walk in her shoes” to say that. Why won’t you form an opinion? Why does her daughter’s disability have anything to do with forming this opinion?

Just in case you are wondering: I did purposely write this without mentioning the mother’s name. The mother is not the story. When autistics have been murdered in the past there have been news stories that never mention the name of the victim.

By Matt Carey

Shannon Des Roches Rosa: Changing Conversations: When Parents Murder Disabled Children

11 Sep

Shannon Rosa is the incredible parent of incredible kids, one of whom is autistic. I could say this from what I’ve read because Ms. Rosa is an excellent writer, but I have also met her and Leo in real life. Ms. Rosa writes at BlogHer as well as The Thinking Person’s Guide to Autism and Squidalicious.

A recent BlogHer article she wrote covers a very important topic: how when a disabled person is murdered the conversation usually focuses on the murderer, not the victim

Changing Conversations: When Parents Murder Disabled Children

Her article starts:

Michigan parent Kelli Stapleton recently pled guilty to poisoning her autistic teen daughter Issy. According to police reports, Kelly lured Issy into a van, “drugged her, lit the grills and left the van to get more charcoal while her sleeping daughter breathed in poisonous carbon monoxide fumes.” Kelli and Issy both survived the attempted murder-suicide. Issy emerged from a coma and seems to be doing well; Kelli is in jail, and is scheduled to be sentenced on October 6th.

Go to Changing Conversations: When Parents Murder Disabled Children for the full article.

–By Matt Carey

NOVA: Vaccines — Calling the Shots

9 Sep

The question of vaccine safety comes up a lot in the online autism parent community. The PBS program Nova is taking a look at vaccines and vaccine safety in a show “Calling the Shots”. As they point out, it is OK to question vaccine safety, but that is just the start of the conversation. The program airs tomorrow (September 10) at 9pm.

It looks like it will be an excellent program.

Here is the webpage for the show complete with a brief sneak preview:

Here is a 3 1/2 minute

here is a “behind the scenes” look at the show


By Matt Carey

Harpocrates Speaks on: MMR, the CDC and Brian Hooker: A Guide for Parents and the Media

8 Sep

Todd W. over at Harpocrates Speaks has put together a FAQ like guide on the questions that come up with regards to recent research by Brian Hooker and the allegations Mr. Hooker has made about the CDC. That article is an excellent resource for people looking for some answers on this story. The article starts:

The anti-vaccine community has been in a tizzy lately over a supposed “CDC whistleblower”, Dr. William W. Thompson, who, according to them, revealed fraud at the United States Centers for Disease Control and Prevention (CDC). To bolster their claim, they point to a new study from one of their own, Brian S. Hooker, that purports to show evidence of an increased risk of autism among African American boys who receive their first MMR vaccine late. However, the claims appear to be hollow and unfounded, and so they have chosen to rely on emotional arguments that may sound convincing to those who are not familiar with the issues and people involved. In a truly egregious fashion, they have erroneously and cynically compared this whole thing to the Tuskegee syphilis study, and equated the CDC with Adolf Hitler, Josef Stalin and Pol Pot, combined.

With that in mind, here is a brief FAQ for parents, news media and others to help them understand what the claims are and what the evidence actually says. The questions below have been raised or implied by anti-vaccine activists. Hopefully, this will prevent inaccurate reporting and help parents feel reassured about the MMR vaccine.

That FAQ can be found at MMR, the CDC and Brian Hooker: A Guide for Parents and the Media


By Matt Carey

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