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Why do people have to see Vaxxed to criticize it? Wakefield’s own description of us tells us Vaxxed is bogus.

21 Apr

Andrew Wakefield got an interview on Fox to defend his film Vaxxed (the video and transcript are at Fox Provides Platform For Discredited Doctor To Claim CDC Is Hiding Evidence That Vaccines Cause Autism). And he’s shooting back at his critics: if you haven’t seen the film you can’t criticize it. It’s doubly ironic. First Wakefield’s team didn’t send out DVD’s to the press, and, second, many critics have seen the film. But the “you can’t comment on the film because you haven’t seen it” is the same argument he used with his horrible “Who Killed Alex Spourdalakis” film. (For those who are unfamiliar with it, it’s a film where Wakefield defends a mother and caregiver for the brutal murder of an autistic young man.) That film was worse than I expected it to be. And I was expecting bad.

Wakefield describes his film in the Fox interview. And just based on Wakefield’s own words, we can see that the film is inaccurate.

Wakefield:

Dr. William Thompson comes forward and says they have known for 14 years that MMR vaccine is causally associated with autism and they have covered it up.

This is wrong. First, the study Wakefield is talking about can not show causality. This sort of epidemiology can show researcher “here’s a place to look for causality”. Anyone who has been in this field for 20 years, like Andrew Wakefield, would know that. ]

But let’s get more to the point–Thompson didn’t say that they showed a causal connection.

From a statement by William Thompson:

The fact that we found a strong statistically significant finding among black males does not mean that there was a true association between the MMR vaccine and autism-like features in this subpopulation.

no “true association” means it doesn’t show causality.

Wakefield goes on:

And so the film, it’s his words, it’s his opinion, it’s his documents that really carry the message of this film that there has been a huge cover-up which has put millions of American children in harm’s way and it was totally unnecessary.

But as we’ve just seen, the key point of the film is precisely not Thompson’s words or opinion.

Wakefield appears to be using William Thompson as a sock puppet. We are told what Wakefield seems to either believe or wants us to hear. And with the claim that it’s not Wakefield doing the telling but Thompson.

But Wakefield’s own words about Vaxxed don’t match Thompson’s own words.

But per Wakefield people can’t criticize the film.

For whatever it’s worth, it’s not just William Thompson who stated that the study doesn’t show a causal connection. Even Brian Hooker, a colleague of Wakefield, didn’t claim a causal connection in his re-analysis of the CDC data. Here’s as close as Brian Hooker gets to claiming causality in his (now retracted) paper:

Additional research is required to better understand the relationship between MMR exposure and autism in African American males

Not “we found a causal connection”, but effectively “someone should test this for causality”. Frankly I don’t think this was a moment of intellectual honesty from Brian Hooker as much as pragmatics: referees know that this study can’t show causality so they would have rejected Hooker’s paper had he tried.

Thompson’s documents don’t show a causal connection either. I’ve made them public so people can check what is in them. Wakefield hasn’t. But Wakefield asks people to “make up their own mind”. The documents don’t show a “huge cover-up”. They don’t show “millions of children in harm’s way”.

Simple check of facts here: The “huge cover-up” putting millions of American children in harm’s way”, shouldn’t we address this? Wakefield is discussing one preliminary result in the CDC study: African American boys vaccinated before age 3. In all other groups, the study (confirmed by Brian Hooker) shows what all the other MMR studies show: no indication of an MMR/autism link. This point, by the way, isn’t stressed in Vaxxed. Even when they bring in autism families, they are mostly white.

But, back to this result. Leaving aside that Vaxxed isn’t accurate, shouldn’t we be concerned? Well let’s do some checking. Brian Hooker in his paper is saying that African American boys are 3.36 times more likely to be diagnosed autistic if they get the MMR vaccine before 36 months. If that is due to a real causal connection, we should easily see that in other data. MMR uptake is generally comparable by race. So even though African Americans are a minority in the U.S., 3.36 is high enough that some indication of a risk would have shown up in one of the other autism/MMR studies. But let’s not just handwave like that. Let’s check directly: is the autism prevalence higher in African Americans? Boys are roughly 4 times more likely to be diagnosed as girls, using Hooker’s 3.36 increased risk for African American boys (and if I’ve done my math correctly) African Americans should have an autism prevalence 2.9 times higher than Caucasians.

2.9 times higher autism prevalence. That’s big. We would see that on autism prevalence studies easily.

The CDC recently released an autism prevalence estimate. And they show that African Americans are less likely to be diagnosed.

Estimated ASD prevalence was significantly higher among non-Hispanic white children aged 8 years (15.5 per 1,000) compared with non-Hispanic black children (13.2 per 1,000), and Hispanic (10.1 per 1,000) children aged 8 years.

Yes, African Americans are less likely to be diagnosed (about a factor of 0.85). Again, using the data that Wakefield claims shows a “causal” connection between the MMR and autism, we expect 2.9 times higher prevalence. The facts just don’t match up with Wakefield’s claims.

The fact that autistic people from racial/ethnic minorities or low income families are less likely to be diagnosed is a problem true autism advocates are trying to fix. Many are not receiving the appropriate services and supports. But that’s what real autism advocates are working on, not Andrew Wakefield.

So, we have a film that by comparing Andrew Wakefield’s own description with the facts is inaccurate. But per Andrew Wakefield people can’t criticize Vaxxed if they haven’t seen it. That’s a bit of a logical fail on Mr. Wakefield’s part. Not like we have a shortage of those.

—
By Matt Carey

Movie review: VAXXED

2 Apr

Andrew Wakefield’s film, VAXXED, opened today in a theater in New York. Mr. Wakefield somehow convinced Robert De Niro to break the rules of the Tribeca Film Festival and personally insert the film into the lineup of TFF. When this was discovered, Mr. De Niro first defended his decision and, after getting input from people whose expertise is science, pulled the film. Mr. Wakefield, with no apparent sense of irony about having avoided due process to get into the festival, cried out that he was denied due process in the removal process. But didn’t hesitate to add the tagline to his film poster, “the film they don’t want you to see”.

The opening of VAXXED had about 20 people in the audience by one account. I couldn’t attend, but someone I know did and gave me a lot of feedback. I was preparing to give summarize that feedback here when a review on indewire came out: ‘Vaxxed: From Cover-Up to Catastrophe’ is Designed to Trick You (Review) which concurs with the impressions I was about to relate here. Here’s a paragraph from that review:

In a statement leading up to the film’s release, Wakefield’s co-writer Del Bigtree claimed that “Vaxxed” is “not an anti-vaccine movie,” which is kind of like saying “Triumph of the Will” is anti-Hitler. Strung together in obvious ways to induce a constant sense of dread (look out for the slo-mo shot of a crying child!), “Vaxxed” shamelessly repeats the same non-arguments over and over again, drowning facts in murky proclamations.

VAXXED purports to be the story of a “CDC Whistleblower”, William Thompson, who contacted Brian Hooker, a vocal proponent of the idea that vaccines cause autism. The “about” page for the movie pretty much only talks about Thompson. One thing people going to see VAXXED will find is that the CDC study/William Thompson part is a very small part of the film. Most of it is filler, much of the conversation that goes on all the time online about vaccines.

But what is the Thompson story and why is it supposedly so explosive? Well, William Thompson was researcher who worked on vaccine epidemiology at the CDC. Most of that was many years ago. In fact the research discussed in VAXXED started in 2001. Thompson sought out Brian Hooker, a very vocal proponent of the idea that vaccines cause autism and led Hooker to a finding that was not reported when the paper was published in 2004.

Since this is really the heart of the film, allow me to go into some detail. The main claim was that the CDC team found in their first pass/rough analysis that autism was more common in African American boys who got the MMR vaccine than those who didn’t. Another finding was that for children without other conditions, there also appeared to be a higher autism risk. This group was called at the start of the study “isolated autism”, as in autism isolated from other conditions.

Let’s take that second one first, isolated autism. Here’s the thing–when the CDC team published their study in 2004, they did report on this. Instead of autism isolated from all other conditions, they showed autism without intellectual disability. The CDC reported that the calculated risk for this group was “statistically significant”.

In other words–what did they hide? Nothing. It’s the same result that Wakefield says was hidden. The only question I have– if this result is so important, why didn’t Wakefield or Hooker notice for the 10 years after it was published?

So, what about the other result? Thompson told Hooker that the CDC team another possible result. This result was limited to only African American boys, a fact that is largely glossed over in a film of largely white people. And this Autism/MMR/African American boys result didn’t remain statistically significant under the CDC planned, more complete, analysis. Which is to say, it’s not strong, it’s not really controversial.

But let’s ignore that for the moment. Let’s ask ourselves, if this is the smoking gun, the finding that was so explosive that a CDC researcher reached out to Brian Hooker to tell him about it, why don’t we don’t hear about that that finding until about 1/2 way through the film? And why is so little time spent on it? I’d think this would be a huge part of the film.

Let’s take another step back, a step away from the film. Here’s the thing about this from my perspective as an autism parent–if you believe this represents a real effect (that the MMR causes autism in African American males), you act very differently than Andrew Wakefield. You try to answer the question. Wakefield was at one point running a charity whose stated purpose was autism research (in the end, about half the money went to Wakefield’s salary). He is reported to have raised $400k for this film. Four hundred thousand dollars. I have seen no effort whatsoever by Mr. Wakefield to investigate this claim of a link between MMR and autism in African American boys. Instead we keep hearing about efforts on getting a congressional hearing on the subject. For those outside the autism community: there have been two autism related congressional hearings in recent years. While they have provided much YouTube footage for people pushing the idea that vaccines cause autism, they haven’t done anything to make life better for the autism communities. Nothing.

But one might argue, William Thompson tells us that this shows vaccines cause autism, right? No, he doesn’t. Here’s a public statement (one of only 2 I am aware of) that Mr. Thompson wrote:

The fact that we found a strong statistically significant finding among black males does not mean that there was a true association between the MMR vaccine and autism-like features in this subpopulation

But you won’t find that point emphasized in VAXXED. Instead you will find Wakefield and cowriter Del Bigtree claiming that Thompson says that the CDC “…knew that vaccines were actually causing autism”

There’s a huge difference between “does not mean a true association” and “knew that vaccines were actually causing autism”. I don’t know how big the difference is in film producer land, but in science, it’s night and day.

While we are exploring whether this claim of an MMR/autism link in African American boys, it’s worth noting that just yesterday the CDC came out with their latest autism report (they do this every year at the beginning of April). The CDC autism prevalence numbers show a very different story about the possibility of the MMR causing autism in African American boys. The autism prevalence in African American children is lower than that in whites. If the MMR/Autism link were real and as large as the rough analysis claimed, it would be higher.

And what about the dramatic claim of research fraud by the CDC team? This claim not only doesn’t hold up, but it’s morphed a bit over time. Originally Wakefield and Hooker claimed that the CDC changed their analysis plan after finding the “race effect”. That is–they saw a result they didn’t like and then changed the analysis plan. Let me show you. Here’s a quote from an earlier Wakefield video on the subject

“Over the ensuing months, after the data after the data had been collected and analyzed, and strictly forbidden in the proper conduct of science, the group abandoned the approved analysis plan, introducing a revised analysis plan to help them deal with their problem.”

We also see this claim in the press release that accompanied Brian Hooker’s “reanalysis” of the CDC data:

According to Dr. Thompson’s statement, “Decisions were made regarding which findings to report after the data was collected.” Thompson’s conversations with Hooker confirmed that it was only after the CDC study co-authors observed results indicating a statistical association between MMR timing and autism among African-American boys, that they introduced the Georgia birth certificate criterion as a requirement for participation in the study. This had the effect of reducing the sample size by 41% and eliminating the statistical significance of the finding, which Hooker calls “a direct deviation from the agreed upon final study protocol — a serious violation.”

Emphasis added.

The problem with that statement was that the final “revised analysis plan” was dated Sept 5, 2001 and the “race effect” wasn’t seen until late October/early November 2001. Two months later. In other words, for this version of the fraud claim to work, the CDC team would have to travel back in time. We know this timeline because the William Thompson documents are now public and we can compare the analysis plans and analysis.

If this seems confusing, it gets worse in VAXXED where we are taken into a discussion of the CDC team switching from using race data from school records to birth certificates and how this reduces the statistical power and hides an effect and all.

Rather than go into details about that, I’ll state this: this argument is a red herring. And wrong, but a red herring. Yes the CDC had data from both school and birth records. But they always planned on using the birth certificate data for their final analysis. From the analysis plan we read:

For the subset of children with Georgia birth records, sub-analyses will be performed in which potential confounding variables from the birth certificate will be used to adjust the estimated association between the MMR vaccine and autism. The variables that will be assessed as potential confounders will be birth weight, APGAR scores, gestational age, birth type, parity, maternal age, maternal race/ethnicity, and maternal education

Or to put it simply, the school records didn’t include things like APGAR scores and so much more that the CDC team planned to use from the start.

So much for “research fraud”.

We can go through the details, but let me just say that a great deal of VAXXED is not really directly the story–the story that is promised in the VAXXED web page. A lot of discussion about and by Andrew Wakefield, for example. We also get parents speaking about their beliefs that vaccines caused their child to be autistic. While very emotional and not something to be dismissed, this doesn’t address the question of whether vaccines cause autism or if there was malfeasance at the CDC.

We a significant amount of filler in the “Big Pharma is bad” sort. The industry insider they get to speak is person who worked in sales for Vioxx. No expertise on vaccines, no experience on the inside for vaccines. And more that I just won’t go into detail about.

Does that mean it won’t be convincing? Well, a large part of the audience for this is already convinced. But will they convince more people with this film? Sadly, the answer is yes. People are not afforded the chance to see the counter arguments. And the appeal to emotion that is much of the film will play. Much better than dry analysis like the above that I have provided. But do I find this movie in the least accurate? No.

—
By Matt Carey

Todd Drezner: Cinema Libre Studio and “Vaxxed”

31 Mar
Below is an open letter by Todd Drezner, director of Loving Lamposts, to Cinema Libre  the distributors of Andrew Wakefield’s VAXXED.

Dear Cinema Libre,

I’m writing to explain why I’m so disappointed in your decision to distribute “Vaxxed.” I have three main objections:

1) Perhaps of most relevance to Cinema Libre is that Andrew Wakefield has assembled his film using unethical and dishonest editing techniques. As documented here, the “Vaxxed” trailer splices excerpts from two different phone calls together and then inserts a narrator giving an interpretation of those calls that is not supported by the facts. And this is merely one example from a brief trailer. Who knows how many misleading edits Wakefield has made in the full film?

Given Cinema Libre’s commitment to the idea that documentaries can make a social impact, I would think you would want to be associated with filmmakers who follow ethical practices and journalistic standards when making documentaries. When a dishonest filmmaker like Wakefield receives distribution and a theatrical release, it undermines all documentary filmmakers. We depend on the trust of our audiences. Your decision to support a dishonest film like “Vaxxed” destroys that trust. Documentary filmmaker Penny Lane outlines these issues nicely here.

2) Cinema Libre’s blog post about “Vaxxed” refers to “the suppression of medical data by a governmental agency that may well be contributing to a significant health crisis.” This is, I’m sorry to say, no more than a fever dream. First, as you will remember from watching “Loving Lampposts,” the autism “epidemic” can be explained by a combination of changing diagnostic criteria, increasing awareness of autism, and the benefits of receiving a diagnosis (in terms of the access to services and support the diagnosis provides).

Secondly, the CDC “whistleblower” around whom the trailer (and I assume the film) revolves did not reveal anything nearly as sinister as the trailer suggests. It is true that William Thompson of the CDC revealed to Dr. Brian Hooker that a 2004 study of the possible link between the MMR vaccine and autism supposedly found an association between the vaccine and autism in African American males.

Before I say anything about that finding, let’s note what that finding rules out: any association between the MMR vaccine and any other group besides African American males. Even if Thompson’s assertion were true (it’s not), it still doesn’t support the idea that the MMR vaccine causes autism in the many people who are not African American males.

But what about the supposed link between the vaccine and African American males? It’s nothing. Basically, the original study of the association between the vaccine and autism did not leave out African Americans on purpose. Rather, it did so to eliminate “confounders” — that is, any factor other than the vaccine that could have been associated with autism. The authors of the study wanted to be sure that any effect they saw was caused by the MMR and not something else. Dr. Hooker’s “re-analysis” of the study does not account for confounders properly and even if it did, the population of African American males in the study is too small to support any broad conclusions. And one more time, even if the supposed link between African American males and the MMR vaccine were significant, it still rules out any link between the vaccine and all other groups. You can read about these issues in much more detail here and here.

It’s well known that Andrew Wakefield’s research into the MMR vaccine and autism was fraudulent. His film is based on equally poor science.

3) Despite Richard Castro’s statement on your blog that the Tribeca Film Festival succumbed to “pressure to censor” “Vaxxed,” there was no censorship. As I’m sure you’re aware, the First Amendment guarantee of freedom of speech prohibits the government from restricting speech. The Tribeca Film Festival is not government. It is a private organization that is free to screen, or not screen, any film it chooses for any reason. Indeed, Tribeca rejects the work of thousands of filmmakers every year. I’m sure Cinema Libre rejects many filmmakers as well. Are they being censored? Of course not.

On the “Vaxxed” website, Andrew Wakefield and Producer Del Bigtree claim that they were “denied due process” when Tribeca decided not to screen “Vaxxed.” This is absurd. There is no such thing as due process when it comes to the decisions of a film festival selection committee. Nor should there be. If such a thing existed, every prestigious film festival would spend all its time sifting through complaints from unhappy filmmakers. There will always be unhappy filmmakers who are denied admission to film festivals. Andrew Wakefield is now one of them. But he is not a censored filmmaker.

On a personal note, I was and remain grateful for the work Cinema Libre did to promote “Loving Lampposts” when it was released. You got the film screened at venues I could not have and publicized it through news coverage I did not have access to. I hoped and believed that along the way, you came to appreciate the film’s message that autistic people can thrive when they are accepted and when they receive the support they need to function in a world not built for them. Apparently, and much to my dismay, this message did not sink in.

By releasing “Vaxxed,” Cinema Libre is actively harming thousands of autistic people. While we should be discussing ways to best support autistic people and help them lead fulfilling lives, you would instead have us follow a discredited scientist and dishonest filmmaker down a rabbit hole that leads only to long debunked conspiracy theories. I am profoundly disappointed.

I don’t expect that Cinema Libre will change its decision. But given our long business relationship, I felt I owed you this explanation of where I stand. I hope that sometime in the future you may find ways to undo the damage you are about to cause.

Wakefield responds to his film being pulled by the Tribeca Film Festival. And it’s very classic Wakefield

28 Mar

If you don’t want to go through this whole article, and just want the most interesting bit here it is–Wakefield has responded to the Tribeca Film Festival (TFF) pulling his film. Wakefield had pulled strings somehow to get Robert De Niro (who founded TFF) to push TFF to accept the film. Immediately after it became public that Wakefield’s film was “selected” for TFF, criticism rained down from all over the world. In is defense, Wakefield brought in a sitting member of the U.S. House of Representatives to lobby to keep the film in. Now that the film has been officially pulled, Wakefield is decrying the “lack of due process” afforded him.

One wonders, doesn’t one, how legitimate film makers whose films were both accepted and rejected by TFF are swallowing that bit of irony. I mean, this is the first time in the history of the TFF that De Niro forced a film into the lineup. And, yeah, having a Member of Congress spend an hour talking to De Niro? I’m sure each and every budding film maker brought her/his own Member of Congress into the process right?

Lack of due process? Really? Wakefield had the temerity to decry a lack of due process? Wakefield would never have been in TFF if he had believed in and practiced the actual “due process” of applying, being good, being selected.

The irony is thick. As it so often is with Andrew Wakefield.

Now to what I wrote–

What are some of the classic traits we’ve come to know from Andrew Wakefield? First, he’s a martyr who suffers for the cause, but the rock of strength. He tells us he’s lost everything, his job, his career, his country…heck, there’s even a film out there where he talks to a mirror and tells us he’d gladly die for the children. I find this imagery rather difficult to accept given the size of his house from his Austin days (5900 square feet, one of four properties listed in the Austin area as owned by the Wakefields) and $270k/year base salary (my guess significantly higher than “academic gastroenterologists” make in the UK). But more to the point, why did he keep half the money from his autism research charity as his salary? But, again, it seems one can’t watch Wakefield speak without hearing about how strong he is and how much he’s given up for the cause.

Given how he frames himself, his response to having his film pulled by Tribeca was pretty much true to form:

To our dismay, we learned today about the Tribeca Film Festival’s decision to reverse the official selection of Vaxxed: From Cover-Up to Catastrophe.

Robert De Niro’s original defense of the film happened Friday after a one-hour conversation between De Niro and Bill Posey, the congressman who has interacted directly and at length with the CDC Whistleblower (William Thompson) and whose team has scrutinized the documents that prove fraud at the CDC.

It is our understanding that persons from an organization affiliated with the festival have made unspecified allegations against the film – claims that we were given no opportunity to challenge or redress. We were denied due process.

We have just witnessed yet another example of the power of corporate interests censoring free speech, art, and truth.

Tribeca’s action will not succeed in denying the world access to the truth behind the film Vaxxed.

We are grateful to the many thousands of people who have already mobilized including doctors, scientists, educators and the autistic community.

We will be pressing forward and sharing our plans in the very near future.

Onward!

– Andrew Wakefield (Director) and Del Bigtree (Producer)

We get the whole “we are the downtrodden” while at the same time “we are strong” messages. He claims wide support, including bringing to bear a sitting member of the U.S. House of Representatives while decrying “the power of corporate interests censoring free speech, art, and truth.”

As always, check every word Wakefield says.

First off, here’s a HUGE irony. Giant. He tells us he was denied “due process”. What is due process in a film festival? You submit your work and get it judged on a level playing field along with every other submission. What did Wakefield do? He pulled strings and got Robert De Niro to personally select VAXXED for the festival. He jumped the queue, possibly pushing some worthy selection out, and now he’s crying about due process?

Classic Wakefield. Absolute classic.

Was Bill Posey involved with the original push to get this film included in TFF? We don’t know, but we know that Bill Posey was involved with keeping it in, at least for a day.

How many other film makers pull that sort of pressure to get their films into Tribeca? But it’s Wakefield who was denied “due process”. But, hey, his movement is strong. They have a Member of Congress on their side. And Mr. Posey has received donations as a nice thank you for his support over the years.

Mr. Wakefield tells us about Representative Posey’s office “..whose team has scrutinized the documents that prove fraud at the CDC”. Nice phrasing there. Wakefield doesn’t come out and actually say that Posey’s office has claimed that the documents prove fraud, but the causal reader might not catch that.

By the way, the documents don’t show fraud. Everyone can read the documents now. Andrew Wakefield was given many, if not all, of the Thompson documents and never made them public. I remain grateful to Representative Posey’s office for providing those documents to me, and I did make them public. Mr. Wakefield carefully controlled information. I welcome people checking my facts.

Wakefield tells us “It is our understanding that persons from an organization affiliated with the festival have made unspecified allegations against the film”

Unless he’s been hiding behind a rock, there’s also been a media storm of very specific allegations against the film. There’s also the fact that Wakefield’s story surrounding William Thompson doesn’t hold up. There’s also the fact that Wakefield classifies his film as a “documentary” but within the first 30 seconds of the trailer he left facts behind.

What’s then interesting to read is that he moves from “an organization affiliated with the festival” to “the power of corporate interests censoring free speech, art, and truth”

So it’s either a group working with the Tribeca Film Festival, or it’s corporate interests”. And, here’s the thing, Tribeca is a private enterprise. They get to pick what is shown under their name. Declining or removing a film from their list is not censorship. Any more than it would be censorship if I asked Wakefield to host all of my writings about him on his “about” page and he declined my request.

And, if this film is like the others Mr. Wakefield has produced, “art” is not a term I would associate with it. Nor is the word “truth”.

Now, here’s a great turn of phrase:

“Tribeca’s action will not succeed in denying the world access to the truth behind the film Vaxxed”

See what he did there? He made a simple, “this isn’t a film we want to show. Go somewhere else with it” from Tribeca into a sinister act by Tribeca to keep the world from seeing this film.

Nice job, Wakefield. You are making it clear to Tribeca that they were right. Who at Tribeca even thinks they hold such power as you seem to claim? I’ll give you a hint: no one.

Wakefield closes with a claim of far reaching support. Even within the “autistic community”. The term “autistic community” usually refers to the community of actually autistic people. That is a community that has little love nor offers support to Wakefield. That aside, Wakefield never tells people that even among autism parents, the majority do not believe that vaccines might be a cause of autism. This study put vaccines well behind genetics and the “will of God”. Other have put the fraction of parents who believe vaccines could be a cause as low as 20%. And saying, “sure it could be possible” is very different from “I believe this is what caused my child’s autism”.

Wakefield’s following is far too large, but it isn’t actually that large.

But all this said, let’s bring this back to the biggest irony of Wakefield’s response–his outrage at the lack of “due process”.

Yeah, all he had was Robert De Niro picking this film for TFF. And an hour of a sitting Member of Congress lobbying Mr. De Niro. We weep for the lack of opportunity Wakefield had, don’t we?

—
By Matt Carey

Tribeca Film Festival pulls Wakefield’s (faux) documentary

27 Mar

Below is a copy of statements posted to the Tribeca Film Festival (TFF) Facebook page. Responding to criticism about hosting a film promoting Wakefield’s failed views on vaccines and autism, Mr. De Niro first acknowledged that he had taken an active role in placing the film at TFF. Later, Mr. De Niro announced that the film was pulled from TFF and why.

I called the film a faux documentary, neither TFF nor Mr. De Niro has. My reasons are spelled out here.

I would like to thank Mr. De Niro for pulling TFF’s support from this film. While Mr. Wakefield will certainly find another venue to present this film, the stamp of legitimacy of having his film a “Tibeca Film Festival Official Selection” would have given Mr. Wakefield’s message a level of legitimacy it does not deserve.

vaxxed trailer screenshot”

However, it must be said: this film should never have been a Tribeca Film Festival selection to begin with.

Here are the statements from Robert De Niro, from their Facebook page:

UPDATE: 3/26/2016 Statement from Robert De Niro, co-founder of the Tribeca Film Festival, regarding VAXXED at the Festival:

“My intent in screening this film was to provide an opportunity for conversation around an issue that is deeply personal to me and my family. But after reviewing it over the past few days with the Tribeca Film Festival team and others from the scientific community, we do not believe it contributes to or furthers the discussion I had hoped for.

The Festival doesn’t seek to avoid or shy away from controversy. However, we have concerns with certain things in this film that we feel prevent us from presenting it in the Festival program. We have decided to remove it from our schedule.”

3/25/2016 Statement from Robert De Niro, co-founder of the Tribeca Film Festival, regarding VAXXED at the Festival:

“Grace and I have a child with autism and we believe it is critical that all of the issues surrounding the causes of autism be openly discussed and examined. In the 15 years since the Tribeca Film Festival was founded, I have never asked for a film to be screened or gotten involved in the programming. However this is very personal to me and my family and I want there to be a discussion, which is why we will be screening VAXXED. I am not personally endorsing the film, nor am I anti-vaccination; I am only providing the opportunity for a conversation around the issue.”

—
By Matt Carey

Andrew Wakefield releases the trailer for his William Thompson video. Slick production and dishonesty

22 Mar

Remember the disasterous “Who Killed Alex Spourdalakis” movie? That’s the one where Andrew Wakefield was trying to create an autism reality TV show where he would swoop in with his “A”utism TEAM and solve problems for families and show that he was right all along. Except that after the “A”utism team filled a family with false hope, Alex’s mother and godmother brutally murdered Alex. Wakefield took on no blame. Instead he shifted blame from those who committed the act to mainstream medicine. Basically whitewashing a gruesome murder of a disabled young man.

I will note that in the trailer for “Who Killed Alex Spourdalakis”, Wakefield spliced video from a completely different story.

Or, remember when Brian Hooker published a paper claiming that CDC data shows that vaccines cause autism and Wakefield followed up with a YouTube video that was so over the top bad that he claimed that non only were the CDC (including a civil rights pioneer) were engaging in a new Tuskegee Experiment, but that they were worse than Hitler, Stalin and Pol Pot? Because, you see, those brutal dictators were at least sincere. No, I’m not making that up.

Wakefield has been working for some time to make a feature length film out of the Brian Hooker/CDC story. He has an early trailer for “Feast of Consequences” (as it was called then). Just as with the Alex Spourdalakis story, this trailer includes video unrelated to his actual story (the video of a police standoff and the pictures of the girl in the wheelchair appear to be from the Maryanne Godboldo story).

Well, not to be deterred from the film making business, Mr. Wakefield is at it again. This time with the full length movie, now called “Vaxxed”. Here’s the trailer:

The trailer starts with what appears to be a reenactment of a conversation between Brian Hooker (vocal advocate for the failed idea that vaccines cause autism) and William Thompson (CDC researcher):

Brian Hooker:

My phone rings and it’s Dr William Thompson

This is followed by recordings of a phone call with William Thompson:

“you and I don’t know each other very well. You have a son with autism, and I have great shame now.”

Then a narrator.

“There’s a whistleblower from the CDC who is going to come out and say that the CDC had committed fraud on the MMR study and that they knew that vaccines were actually causing autism”

Sit back for a moment and consider what your first impressions of this intro are. I know mine–they seem to be setting this up as the first or perhaps one of the early phone calls between Thompson and Hooker. Since the actual audio clips from Thompson weren’t that sensational, the narrator is quickly pulled in to tell us what really happened.

But this is Andrew Wakefield. And if we’ve learned anything about Andrew Wakefield over the years it’s that you have to check every single detail of what he’s saying. He does a lot of leading you to the conclusion he wants you to believe, whether the facts say something entirely different or not.

Let’s start with a small detail. I suspect many have already wondered why I referred to the clips from Thompson in the plural. It’s because that 10 seconds or so of audio is actually two different comments from Thompson spliced together. And taken out of context. We know this because a book was released with the transcripts of the calls that Brian Hooker secretly recorded.

“You and I don’t know each other very well” is from this part of a conversation. Well into the second call that Hooker secretly recorded. And Hooker didn’t start recording calls until later in their relationship, so this isn’t an introduction at all. We will get into the discussion of what Thompson meant later:

You and I don't know each other very well

“You have a son with autism, and I have great shame now.”

I have great shame

OK, the two clips are from completely different parts of a phone call that happened well into the Hooker/Thompson relationship. Wakefield spliced them together to create a story and, just in case we missed his point, brought in a narrator to tell us what the story “really” is.

So, documentary producer/director he is not. But we didn’t really expect that, did we?

Let’s take a look at those two exchanges in a bit more detail, shall we?

First, “we don’t know each other very well”, was Thompson saying that even after multiple previous exchanges, Hooker doesn’t understand Thompson’s motivations and fears. Hooker appears to be digging for dirt. Something about the behaviors of people at CDC. Likely to smear them later. This seems to be a bit of a trigger for Thompson as he has battled mental illness. He’s not comfortable because he can already see the day when people will say, “Well, he’s [Thompson] mentally ill and why would you believe anything he says, it’s just hearsay”. Hooker assures him that it’s none of their business, and that “I [Hooker] don’t want that to happen, period.”

That’s a heavily ironic thing to read now. Why? The only reason people know about Thompson’s personal medical history is that Brian Hooker and Andrew Wakefield made it public. Hooker and Wakefield filed a complaint with the Department of Health and Human Services and included this statement from William Thompson:

Ya know, I’m not proud of that and uh, it’s probably the lowest point in my career that I went along with that paper and I also paid a huge price for it because I became delusional.

And this exchange between Hooker and Thompson

Dr. Hooker: Did you raise that…did you raise that issue at the time?
Dr. Thompson: I will say I raised this issue…I will say I raised this issue, the uh…two days before I became delusional.

and

Dr. Thompson: It is one of the reasons I became delusional because I was so paranoid about this being published.

So, not only is “you and I don’t know each other very well” not a “Hi, you don’t know be very well, but I’m about to spill the beans” sort of statement, it’s basically Thompson saying that one of his big fears is, well, exactly what Hooker did to him: out his struggles with mental illness.

With friends like Brian Hooker…

So, the second part of the spliced statement that Wakefield included in his trailer, what is that in context? “You have a son with autism, and I have great shame now.” Is it, as the narrator leads us to think, a statement about fraud and that vaccines are proved to cause autism?

No. Or, in Thompson’s own words:

“No, no, no, no. Here’s what I shoulder. I shoulder that the CDC has put the research 10 years behind. Because the CDC has not been transparent, we’ve missed 10 years of research because the CDC is so paralyzed right now by anything related to autism.”

It’s a statement that in William Thompson’s view, the CDC hasn’t done enough vaccine/autism research. It’s a sentiment that I disagree with, given how much effort has been spent on researching the failed idea that vaccines are a primary cause of autism. But let’s move on.

Let’s instead move to the narrator. Recall his statement

“There’s a whistleblower from the CDC who is going to come who is going to come out and say that the CDC had committed fraud on the MMR study and that they knew that vaccines were actually causing autism”

So, what about Thompson saying the CDC committed fraud on the MMR study? Didn’t happen, that’s what. Yes, he had criticisms. He starts his one voluntary public statement with, “I regret that my coauthors and I omitted statistically significant information in our 2004 article published in the journal Pediatrics. ” But let’s stick to what we know Thompson said, rather than what Wakefield and Hooker claim he said in regards to fraud, shall we? What makes the decision to not report a finding “fraud” over a scientific decision? Well, Thompson never says in his statement that there was fraud or misconduct by the CDC team. He does say “Reasonable scientists can and do differ in their interpretation of information.”

Let’s back up a bit, what is the Hooker/Wakefield claim of fraud? In a nutshell, they claim that the CDC team found a result they didn’t want to make public and then changed the research plan/protocol so they wouldn’t have to report that. In this exchange from a phone call we can see Hooker apparently trying to get Thompson on tape saying this. Trying because Thompson refuses to say it:

Dr. Hooker: And then you basically deviated from that particular plan in order to reduce the statistical significance that you saw in the African American Cohort.

Dr. Thompson: Well, we, um, we didn’t report findings that, um…All I will say is we didn’t report those findings. I can tell you what the other coauthors will say.

As to the claim by the narrator that Thompson stepped forward and stated that …”that [The CDC] knew that vaccines were actually causing autism”. Nope.

Consider this part of the public statement by Thompson, a statement I doubt will be prominent in Wakefield’s movie

I want to be absolutely clear that I believe vaccines have saved and continue to save countless lives. I would never suggest that any parent avoid vaccinating children of any race. Vaccines prevent serious diseases, and the risks associated with their administration are vastly outweighed by their individual and societal benefits.

That is not the statement of a person who believes that vaccines have been shown to cause autism and that the studies to the contrary are “fraud”.

Also, Thompson provided a summary statement to Member of Congress Bill Posey. That was made public along with a great deal more documents when I released them here. What does Mr. Thompson have to say about the study in question showing that vaccines “actually cause autism”?

The fact that we found a strong statistically significant finding among black males does not mean that there was a true association between the MMR vaccine and autism-like features in this subpopulation.

Let’s give this finding the greatest benefit of the doubt. Let’s ignore that it is an incredibly weak and almost certainly spurious result. Even then, it doesn’t show causation. A study like this can’t. And anyone who has done scientific research (such as Brian Hooker and Andrew Wakefield) should know that.

But, hey, let’s just make this simple–if Thompson had said something clearly claiming fraud, clearly claiming that the CDC knew vaccines cause autism, Wakefield would have included that in his video. Instead he splices disparate conversations together and has his narrator tell us what we should think.

In other words, if Wakefield had the facts, he’d use them. Instead all I see is more smoke and mirrors.

And that’s just the beginning. The first 30 seconds. We could go on and on, dissecting the trailer frame by frame. It’s that bad. And this is just the trailer. He has a full film out now.

—
By Matt Carey

Where are all the old people with autism? Most of them are dead. Can we stop denying their existence and start trying to make a difference?

18 Mar

One of the most aggravating arguments one sees in the never ending online discussions of whether autism is a “vaccine epidemic” (it isn’t) is the “where are all the old people with autism?” This invariably comes from faux autism advocates (think Age of Autism and their sponsors) who have done nothing to support an actual answer to the question. Have they backed an effort to study autistic adults, their needs, what has worked, what has failed? No.

Well, thankfully the autism community and the autism research community do consider the question of autism and adults to be important. No where near enough research goes into this field, but some does.

A study recently came out that explores, well, the title says it all: Premature mortality in autism spectrum disorder

Doctor’s diary: Why do people with autism die so young?

Now, a major Swedish study provides a wider perspective on premature mortality among people with autism. Neuropsychologist Tatja Hirvikoski and colleagues at the Karolinska Institute compared mortality rates of people with autism with the general population over two decades. Speaking from Stockholm, Dr Hirvikoski says that she was “shocked and horrified” at the results. Her team found that the mean age of death of somebody with autism was 54 – compared with 70 for the general population. For people with autism and a learning disability, life expectancy was a mere 40 years.

Read that again–the life expectancy for autistics like my son is 40 years.

One might claim that I am using this paper to criticize those who promote the “autism is a vaccine epidemic idea”. First off, they deserve criticism. They have wasted 2 decades of advocacy efforts chasing a failed idea. Perhaps some small fraction will read Dr. Fitzpatrick’s article and heed the wake up call–we need to put our efforts into advocating for a better life for adult autistics. By “we” I mean autism parents. Thank god we have autistic adults who are fighting this fight now. Rather than dismiss them with the standard, “you are not like my kid” arguments we autism parents throw around, it’s time to ally with people who are working to make a difference.

I can already write the responses to this study that will come from faux autism advocates and the vaccine antagonistic: “Look at the high mortality rate for autistic adults. That’s the damage that vaccines cause!”

If you are even thinking that, you are part of the problem, not the solution.

And if you are thinking, “this is only a problem for autistics with intellectual disability”, here’s a line from Dr. Fitzpatrick’s article to consider:

For people with autism who do not have a learning disability, the key factor is suicide, for which the rate is nine times greater.

As John Elder Robison (autistic adult) has discussed, suicide is a risk for those without intellectual disability.

What sort of supports–housing, employment, day programs, medical–do adult autistics need? What contributes to early death vs. living a long life? These questions are real. These questions deserve our advocacy. And the entire story of “autism is a vaccine epidemic” is built around denying that there is a large group of undiagnosed adult autistics. It is built around diverting advocacy away from pushing for a better life for people with disabilities and into opposing vaccines.

We just spent a couple years here in California trying to restore funding to the disability services system. You would never know that if you were reading the sites focused on vaccines, like the Age of Autism blog, or Robert “Dr. Bob” Sears’ Facebook page. You would see a big effort wasted on lobbying against a California vaccine bill (complete with Dr. Bob claiming he represents my kid along with all autistic students in California–where the hell were you Bob when we actually needed you?).

The message is simple and clear–autistic adults die much sooner than the general population. If nothing changes, my kid will likely never reach my age. There is a very loud advocacy effort focused on vaccines. OK, even if you don’t agree with me that you are wasting your time, you need to be putting real effort into areas that will make change in how we support autistic adults.

For those–think Anne Dachel of the Age of Autism for one–who keep on saying “where are the older adults with autism”. Keep saying that. And watch nothing change. And blame someone else for it. For those who actually want a better life, no time like the present to start affecting change.

—
By Matt Carey

California budget battle to restore disability services–WE WON!

17 Mar

My apologies for not posting this right away. For those who have been following the battle in the California Legislature to restore some of the lost funding to disability services, WE WON!

OK, we started out trying for a 10% increase and got 7.5%, but this is a heck of lot better than when we got nothing in the new budget.

The ARC and United Cerebral Palsy California Collaboration spent a lot of time getting support for this and deserve a lot of thanks from our community. The letter announcing the final decision is below.

Dear Friends,
The Assembly and Senate just passed the bills to save our community services. The bills now to Governor Brown for his signature, which is certain.
As Assembly Speaker Toni Atkins said, “The passionate advocates for this funding should be proud of their persistence” – two years of persistent, vocal, united community advocacy.
The bipartisan vote on the key bill to provide the funding was 28-11 in the Senate and 60-16 in the Assembly. To find out how your assemblymember voted, clickhere. The Senate vote isn’t up yet, but the 28 “aye” votes were all the Democrats and two Republicans, Senator Huff and Senator Cannella.
If your senator and/or assembly member voted “aye,” please call them now to thank them. Click here to find them. If you talked to someone in their office before, call that person and let them know we don’t just complain, we thank them when they deserve it. And save their name and number; there will be more fights.  
If your senator or assembly member is among those Republicans who for one reason or another felt they couldn’t vote for it, don’t hold it against them! The Republicans’ vocal support for months was a big reason why we got this far. And if they had tried to stop their fellow Republicans from voting “aye” today, they probably could have stopped them, which would have blocked the bill — but they didn’t.
This isn’t the last fight. As Assemblymember Mark Stone said to all his colleagues who voted for the package, “Stay with us next year, the year after that, the year after that, to protect this particularly vulnerable community.”
(Actually, we can’t even wait till next year. Today’s action will, for the most part, stop the deterioration of our community services, but we have some gaps to try to fill in the budget that will get adopted in June. Stay tuned.)
But for now, it’s time to celebrate.
And thank you for your advocacy.
Greg
 
Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy California Collaboration
1225 Eighth Street, Suite 350, Sacramento, CA 95814

—
By

Matt Carey

California Legislative Action Alert: The Vote to Save Our Services is Set for Monday!

26 Feb

The California developmental disabilities community has been fighting a long and hard fight to regain lost ground in support for services. Basically, the budgets keep leaving us out and with inflation we keep losing ground.

The budget support is coming up for vote on Monday. I know I’ve asked many times for calls, faxes, emails, etc., but with luck this is the last time. Make it count–make your needs heard. Details are below in a letter from Tony Anderson of the Arc California and the Lanterman Coalition.

The Vote to Save Our Services is Set for Monday!
 
 
Dear Friends,
From everything we hear, we’re going to win in both the Senate and Assembly on Monday! We appear to have the two-thirds, bipartisan majorities we need to pass the compromise agreement to save our community services.
But just be safe, we’re asking everyone to make two more calls before noonMonday – one to your state senator, and one to your assembly member. Click here to find who they are.
As usual, if you already have talked to someone in your senator’s or local office, call him or her. Otherwise, call their Capitol office in Sacramento.
The message is even simpler than usual – just give them your name and address, and ask them to please vote yes on ABx2-1 and SBx2-2 to save ourt developmental services. There’s no need for confrontation at this time, we just need the policymakers to know we are watching close and we want their vote on Monday.
As we acknowledged earlier, the agreement doesn’t achieve everything needed – our community is going to need to stay united to fight for the rest iof what we need in the months and years ahead — but it is a critically important step to provide relief and recovery.
Please make two calls before noon Monday.
And thank you for your advocacy!
Tony
 
Tony Anderson
Executive Director, The Arc California and
Chair, The Lanterman Coalition
1225 Eighth Street, Suite 350, Sacramento, CA 95814

 

London McCabe’s mother pleads guilty, sentenced to life in prison

24 Feb

London McCabe was a young autistic boy. News reports say he loved hats and pictures of him show him as a smiling beautiful kid (all kids are beautiful, by the way). He only lived to age six. He was murdered when his mother threw him off a bridge. Yes, threw him off a bridge.

That was 2014. Many of us have worried that his mother would try the “raising an autistic kid is too much” defense. So I, for one, am relieved that she plead guilty. This doesn’t bring back London. This isn’t really justice. But this is the next best step in moving forward. I wish his family well. If I lost a kid, I don’t think any court proceeding would bring closure, but a lack of a sentence would make things worse.

You can read more at Mom who threw 6-year-old son from Yaquina Bay Bridge sentenced to life in prison

In Mom planned to throw son off Yaquina Bay Bridge, hoped to be found guilty but insane, DA says, we read:

McCabe pleaded guilty to murder Monday in Lincoln County Circuit Court and was sentenced to life in prison with the possibility of parole after 25 years.

The mother has shown no remorse for the death of her son, Branam said. She appeared happy in jail, didn’t mention her son’s name for months and gleefully discussed the books she’d read while behind bars.

Internet search history from October 2014 included inquiries by McCabe on the chances of surviving a fall into water from 133 feet — the height of the Yaquina Bay Bridge — as well as searches on an insanity defense and news stories on parents who have thrown their children from bridges, Branam said.

But also,
`

Matt McCabe said the loss of his son has left a large void in his life. He said the sentencing of his now-ex-wife brings him no closure.

“I will miss my son forever,” he said.

and, from Woman gets life in prison after son thrown from bridge

“I can’t say enough about this boy,” the ex-husband said Tuesday. “He was my pride and joy. He was the center of my attention; his loss leaves a black hole in the center of my life.

“If you know an autistic individual, he needs love, too. Maybe more than you and I.”

—
By Matt Carey

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