Sunday, January 16, 2011

Two Years of Autism Jabberwocky

Two years ago today I started Autism Jabberwocky with my first post "Correlation, Causation, and non-sense".  I don't think more than a handful of people have ever that post but I still think what I said then is as relevant today as it was then.

People still misunderstand and misuse correlation all of the time.  I think the Wikipedia article on the subject still gives one of the better summaries on the subject -
Correlation does not imply causation" is a phrase used in science and statistics to emphasize that correlation between two variables does not automatically imply that one causes the other (though correlation is necessary for linear causation, and can indicate possible causes or areas for further investigation... in other words, correlation can be a hint).
I still run across people who ignore that definition and twist it to suit their own needs.

If they disagree with a controversial treatment, such as the GFCF diet, and you say that the treatment has helped your children, they might use the "correlation does not imply causation" line to say that the diet couldn't have caused the changes.  Or on the flip side, you have people who think that autism is genetic and take the smallest correlation or appearance of increased risk and immediately jump to the fact that just having a rare genetic condition can cause autism.

Its funny really, even people who claim to base their opinions on science fall into the trap of favoring lines of thought that agree with their opinions and discount those that don't.  I, of course, never have that problem and am perfectly rational at all times.....

In my first post I also briefly mentioned a part of my twin daughters history that I don't think I have ever really explained.  You see,  my older twin daughters experienced a regression at about one year old.

Before the regression, the twins were progressing normally for being twins, which means they were meeting most of their milestones but were slower to start using words (its a twin thing).  They also had some decent social skills going and we had actually seen them team up to do something a few times.

But, about a month before their first birthday, we went in for a normal doctors visit and they received their second flu shot.  Less than a day later, they both spiked a fever and developed what we thought was a cold.  We still don't know what exactly they had but, whatever it was, it was something nasty and they couldn't seem to shake it.  They spent the next six to eight weeks or so trying to fight off whatever it was and were just miserable little lumps the entire time.  They went from being happy little girls to just sitting and staring.

About two weeks into the cold they both came down with what was most likely rotavirus and we experienced  diarrhea like we never had before.  And even though the worst of it passed after a week or two, the twins never stopped having issues with loose stools until we put then on the GFCF diet over a year later.

About four weeks into the cold they both developed ear infections and were put on antibiotics.  A trip to the emergency room, some perforated eardrums, and a week later they seemed to be coming out of whatever it was and we took them in for a regular doctors visit which is when they received the MMRV shot.  The same day as the appointment the mystery illness came back and, over the next several days, they also developed a strange rash that resembled chicken pox on their stomachs.  They spent the next two weeks being even more miserable than before.

When they finally managed to kick whatever it was and started feeling better, they were subtly different.  They were not as engaging as they were before and the early vocalizations we had heard disappeared.  More importantly, they stopped responding to sound the same way. It took up a while to pick up on what was going on, but for several months we thought that they might be deaf.

As a matter of fact, after they failed two hearing tests, there were several audiologists who also thought that they might be deaf.  It took a procedure known as an auditory brainstem response (ABR) to establish the fact that they were still physically able to hear.  I suspect that this abnormal processing of sound is a large part of the reason that their ability to understand speech and to talk is still very limited to this day.

Now, let me be clear, I don't think that this illness or the vaccines "caused" their autism - I believe that they would have still developed autism like their younger sister did.  But I do believe that this illness made their autism worse than it would have been otherwise.

Since this time we have learned a few little facts.  Like the fact that a flu shot hasn't been shown to be effective in children under the age of two.  Like the fact that thimerosal - which was in the flu shots - probably isn't the best thing to give to very young children.  Or like the fact that you really shouldn't give any vaccine to a child who is sick and on antibiotics.

I have also learned more about how the body works and how seemingly unrelated systems can interact.  Such as how problems with energy metabolism can be made worse by an abnormal immune system reaction.  Did I ever mention that the twins have documented problems with immune disregulation and suspected problems with processing creatine?

Do you know what can happen to a one year old who, under the best conditions, have problems with an overactive immune system and processing energy, add in the extra stress of rotovirus, a nasty cold/flu, and an ear inflection, and then further stress them out by injecting weakened forms of four major childhood illnesses at once with an adjuvant designed to kick the immune system into high gear?  For good measure add an undiagnosed food intolerance to milk, deficiencies in basic nutrients such a iron and zinc (most likely caused by the food intolerance), and the GI problems caused by an oral antibiotic and you might just get the perfect storm.

Its no wonder that they looked miserable.

I don't know if we could have down anything differently with the twins.  Perhaps if we had, they might be more like their youngest sister.  Baby C never had a period of illness like this and never had any sort of regression.  She still gets her vaccines but we slowed them down and spaced them out more.  She never gets them when she is sick and we never give her more than two at once

So now, five years after the twins regressed, we are still trying to figure out what happened and what we can do to help all three girls.  I know that science has exonerated vaccines from having anything to do with autism but, and this is the important part, science deals with overall trend and large groups of people.  Large studies are good at detecting overall trends but can't necessarily tell you what happened with an individual child.

So even though I know, understand, and accept the fact that - for the majority of children - vaccines are perfectly safe and that I know that my children would still have autism without the vaccines, I still have my doubts.  Maybe there are other children out there who, like my twins, simply couldn't tolerate what they were given at the exact moment it was given.

Who knows, maybe I am completely wrong about this entire sequence of events and the regression would have happened regardless of what we did.  But that is unknowable and all I can go on is what seems to be the sequence of events.  All I know is that the two separate children reacted the same way to the same events at the same time and there appears to be a correlation in spite of all of the science saying that there should be none.

But, as I said at the start, correlation isn't causation.

Saturday, January 15, 2011

Jabberwocky of the Day : Medical Establishment Shielding Wakefield

According to blog entry written by Brian Deer for The Guardian, the "medical establishment" have "closed ranks" behind Wakefield to shield him from fraud claims.  No, I am not making this up, go read the article for yourself.

I think my favorite part of the story is this one -
But a Philadelphia-based commentator was not impressed by the BMJ's intervention. "It doesn't matter that [Wakefield] was fraudulent," Dr Paul Offit, a vaccine inventor and author in Pennsylvania, was quoted in the Philadelphia Inquirer the next day as saying. "It only matters that he was wrong."
I wasn't surprised. From his establishment vantage-point, this was the third time Dr Offit had popped up to opine on the issue. Twice previously he'd been quoted as saying that my findings were "irrelevant" (although he'd been happy enough to use them in his books). Science had spoken, his argument went. There was no link between the vaccine and autism. It was experts like him who should rule on this matter, he seemed to imply, not some oik reporter nailing the guilty men.
Uhm, well, err, yes....

Dr. Offit is clearly trying to shield Wakefield from fraud claims.  In other news, pigs were seen flying in Philadelphia earlier today.

Deer's solution to the problem of doctors defending doctors and relying on science?
So, what's my point? I think these comments reveal a striking pattern: doctors default to defending other doctors. In fact, until recently there was a GMC regulation that banned them from bad-mouthing colleagues.
But in the specifics of their stance there seemed the idea that scholarly debate, epidemiology and suchlike, should arbitrate. Truth would emerge from the "scientific method", not from "we can reveal" media muck-raking.
Let battle commence, I say. Let doctors expose each other. Let journals compete to get the truth out first. Because 13 years passed before I slayed the MMR monster. And although a single, severed hand may yet come crawling across the floor, for science and public safety 13 years is still too long.
I think Deer nailed it. Journalism like his is clearly the best way to deal with the complex medical issues raised by Wakefield's research.  Who needs actual evidence to refute the claims?  We should throw out the scientific method and let the media tell us what is what.

Or even better,  lets take it one step further and create a new reality TV show - Doctor vs Doctor.  We can lock MDs with different options in a house for a week and film the whole thing and let the public vote on who they like better.  Whichever doctor has the most votes at the end of the week is right.

Who needs little things like data and the scientific method when we could just let people shout it out?

But seriously, this was written by the same person who is making fraud allegations against Wakefield.  Since none of us have access to the same records that Deer does, we have to rely on what he tells us they say.  We have to be able to trust him.

Given rants like this and other incidents in the past, I don't find him to be particularly believable or trustworthy.  Wakefield is certainly not a saint but I don't think that Deer is any better.

But, like always, make up your own mind.

Wednesday, January 12, 2011

Medical Records

The cornerstone of Brian Deer's latest piece on Wakefield is the differences between medical records and the text of the Wakefield study.  He goes to great lengths to point out that that some portions of the children's medical records don't agree with what was published in the study.

As someone who has taken their children to many medical specialists all I can say is that I am not surprised in the least.  Children who have seen many specialists have many different sets of medical records and it is not at all unusual for them to disagree.

Those of you who have been through the process will understand what I am talking about, but for those of you who haven't been, I will explain.

In their short lives, my twin daughters have been seen by many medical professionals.  The following list, which is in rough chronological order, hits just the highlights -
  • A pediatrician
  • The local early intervention program
  • An audiologist
  • A psychologist
  • Another audiologist
  • A pediatric ENT doctor
  • A specialist in the speech and language department in a local hospital
  • A neurologist
  • A developmental pediatrician
  • A speech therapist
  • Another psychologist
  • A geneticist
  • The special education department of the local school district
  • A psychiatrist
  • And finally researchers involved in a study
Each and every one of these professionals took their own complete medical history of the twins and each and every one added their own thoughts and opinions to the record.  None of these people had access to the records of the others.

That means that my twins have at least 15 different sets of medical records spread out across a number of institutions.  I don't have direct access to any of these records so I have no idea what is in them.  If there are inaccuracies or omissions in any of them I would have no way of knowing or correcting them.

So, what do you suppose the chances are that all of these sets of records agree with each other on even the basic facts?  How likely is it that they contradict each other?

My twins could very well be out of the ordinary with how many people they have seen but you are going to have the same problem with even five sets of records.  You have to consider all of the information from all of the records and not cherry pick little snippets from here or there to get the complete picture.

Tuesday, January 11, 2011

The BMJ and Brian Deer

In case you haven't heard, ex-doctor Wakefield now stands acused of being a fraud by the British medical journal BMJ.  In a scathing article and accompanying editorial, the journal says, in no uncertain terms, that Wakefield not only acted unethically but also intentionally fabricated data in his now infamous study -
Deer unearthed clear evidence of falsification. He found that not one of the 12 cases reported in the 1998 Lancet paper was free of misrepresentation or undisclosed alteration, and that in no single case could the medical records be fully reconciled with the descriptions, diagnoses, or histories published in the journal. 
Who perpetrated this fraud? There is no doubt that it was Wakefield. Is it possible that he was wrong, but not dishonest: that he was so incompetent that he was unable to fairly describe the project, or to report even one of the 12 children’s cases accurately? No. A great deal of thought and effort must have gone into drafting the paper to achieve the results he wanted: the discrepancies all led in one direction; misreporting was gross.
These are extremely serious charges for the editor of a prestigious medical journal to be making.  If Wakefield's career wasn't already in the toilet, it would certainly be put in jeopardy by this.  So I would expect that, given the extremely serious nature of the charges, the journal would have rock solid data to back up its allegations.  You don't accuse someone of intentionally manipulating data without being sure that you are correct.  And you don't do it using an editorial in a major journal without being very, very sure.

Or at least I thought that was would be the case.  But after reading the editorial and the article, I have my doubts.  As far as I can tell, none of the charges are anything new nor is there any new substance behind the allegations.  So I really have to wonder what the point of the whole thing is.

I am not defending Wakefield here (I repeat - I am not defending Wakefield) but I have to say that that this looks like just yet another attack on Wakefield by Brian Deer.  Brian Deer has been making these charges for years now and I strongly suspect that if there was enough evidence to make the fraud accusations stick that it would have been brought up at the GMC hearing.  I am sure the GMC would have loved to say that Wakefield committed fraud in addition to acting dishonestly and irresponsibly.

Which brings me to my real question - why did the BMJ pay Brian Deer to write yet another attack on Wakefield?

I could see a journal like the BMJ publishing a review written by researchers or doctors but I don't understand bringing in a journalist to write the piece - especially Brian Deer.  He is not what you would call an unbiased party.  Published papers are supposed to be unbiased, factual affairs - not the same sort of sensationalism that you would find in the Sunday paper.  But if you read the article it looks like something you would see in the newspaper, attempts at footnoting notwithstanding.

As a side note, I have to wonder if this is the first time that the BMJ has published a "peer-reviewed" article, like this one is supposed to be, that cited newspaper articles as an authority.  Articles which were also written by Brian Deer, I might add.  Since the newspaper articles were used to support the claims of the article, were the referenced articles peer reviewed as well?  And how exactly does citing your own newspaper article work?  As you can see, I said the exact same thing over there, and my peer, the editor, agreed with me, therefore it must be true....

One of the other things that really bothers me about this article is that Brian Deer appears to have the medical records of the children from the Wakefield study (he basically said as much last year).  It is one thing for him to have these records - presumably without the consent of the children's parents - that fact alone is bad enough (and possibly illegal, at least in the US).  It is something altogether different if those records were used to publish an article in the BMJ without the proper consent.  That would be a major problem for the journal as well - especially if the journal itself was the one that commissioned and paid for the article.

Which brings me to the next problem, the matter of payment.  Brian Deer said to CNN that he was paid to write this article -
On CNN's "American Morning" Thursday, Deer did not deny he was paid by the BMJ. "I was commissioned by BMJ to write the piece," he said. "That's what journalists do."
And yet, if you look in the competing interests section from the article it makes no mention of this fact -
Competing interests: The author has completed the unified competing interest form at (available on request from him) and declares no support from any organisation for the submitted work; no financial relationships with any organisation that might have an interest in the submitted work in the previous three years
He claims to have not received any support from any organization for the article.  I would consider being paid for writing the article a form of support.  The only hint that in either the editorial or the article that Deer might have been paid is under the competing interest section of the article where it says -
Provenance and peer review: Commissioned; externally peer reviewed.
But that one word is a poor substitute for a real disclaimer.  If Brian Deer was paid to write these articles then he should have disclosed that fact appropriately.  His failure to do so is especially ironic considering that the failing to disclose relevant financial information was one of Wakefield's sins.

As I said above, I really have to wonder why these articles were written.  All of these things about Wakfield have been said before - mostly by Brian Deer - and there is nothing new here except the forum.  I don't believe in conspiracy theories but I can't that I can think of any reason why this newspaper article was publish in the BMJ.  It just doesn't make any sense.

Tuesday, January 4, 2011

Acceptance in the Autism Community

This comic is so indicative of the acceptance of the various factions in the autism community. If you believe the wrong thing, whether it be that vaccines are related to autism, or that autism is a disorder or that autism can be treated using behavioral and/or biomedical techniques or any other heresy, you are labeled a pariah and cast out of the community.

via SMBC