From a parent’s account of her autistic son in Recovering Autistic Children (2006) edited by Stephen Edelson and Bernard Rimland, p. 79:
James took matters into his own hands at about the time of his first birthday, and started refusing milk except in the form of yogurt or cheese.
From Scientific American:
Children who live in homes with vinyl floors, which can emit chemicals called phthalates, are more likely to have autism, according to research by Swedish and U.S. scientists published Monday.
The study of Swedish children is among the first to find an apparent connection between an environmental chemical and autism.
The scientists were surprised by their finding, calling it “far from conclusive.” Because their research was not designed to focus on autism, they recommend further study of larger numbers of children to see whether the link can be confirmed. . . .
The researchers found four environmental factors associated with autism: vinyl flooring, the mother’s smoking, family economic problems and condensation on windows, which indicates poor ventilation.
Here, in a nutshell, are several of the weaknesses with the way epidemiology is currently practiced. I doubt there is anything to this, but who knows? It deserves further investigation. Here’s what could have been better:
1. The researchers did dozens of statistical tests but did not correct for the number of tests. This means there will be a high rate of false positives. The researchers appear to not quite understand this. They don’t need “further study of larger numbers” of subjects — they simply need studies of different populations. The sample size isn’t the problem; the statistical test corrects for that. It is the researchers’ failure to correct for number of tests that makes this evidence so weak.
2. They did their dozens of tests on highly correlated variables. This is like buying two of something you only need one of. A big waste. That they measured something as specific as vinyl flooring implies they gave a long questionnaire to their subjects. Perhaps there were 100 questions. Answers to those questions are likely to be highly correlated. Expensive homes tend to be different in several ways from cheaper homes. The presence/absence of vinyl flooring is likely to be correlated with family economic conditions and condensation on windows (more expensive = better ventilation). The researchers could have used factor analysis or principal components analysis to boil down their long questionnaire into a small number of factors — like 4. So instead of doing 100 tests, they could have done 4 much stronger tests. Then, if there was an unexpected correlation, there would be a good reason to take it seriously.
Someone quoted later in the article gets it completely wrong:
Dr. Philip Landrigan, a pediatrician who is director of the Children’s Environmental Health Center at Mount Sinai School of Medicine, called the results “intriguing, but in my mind preliminary because they are based on very small numbers.”
Nope. Statistical tests correct for sample size. This is like an astronomer saying the sun revolves around the earth. In this article this happens twice.
A new study in Pediatrics has a brief but useful summary of the evidence linking autism and digestive problems. Here’s one study. Here’s a review, with this abstract:
Recent publications describing upper gastrointestinal abnormalities and ileocolitis have focused attention on gastrointestinal function and morphology in [autistic] children. High prevalence of histologic abnormalities in the esophagus, stomach, small intestine and colon, and dysfunction of liver conjugation capacity and intestinal permeability were reported. Three surveys conducted in the United States described high prevalence of gastrointestinal symptoms in children with autistic disorder.
There is also evidence that immune dysfunction is associated with autism.
I believe that few people in America eat enough bacteria — in practice, this means not enough fermented food — and that this causes digestive and immune problems. A vast number of people will say, “of course, good food is really important, bad food causes X, Y, and Z” — where X, Y, and Z can be practically anything. The difference between my views and theirs is the prescription: They inevitably think that people should eat more fresh unprocessed food. (Usually fruits and vegetables, for some curious reason.) Fermented food, of course, is not fresh and not unprocessed.
Thanks to Marian Lizzi.
In the debate over vaccine safety, I’m not on either side. I am quite unsure whether vaccines with mercury caused autism, for example. I would be happy to read a decent book on the subject, no matter what the author believed.
Instead we have a book by Dr. Paul Offit, who wrote, criticizing another book about vaccines, that it “never discusses the fact that mercury is present on the earth’s surface.”
Sentences like that make me think vaccines are less safe than claimed by Dr. Offit.
As I said on Christmas Eve, thanks to Web comments and blogs, you can now hear many voices in a debate in a way you never could before. The New York Times has just added a vote-like recommendation feature to help sift through a large number of comments. (I hope they add a “sort by” feature to make the most popular comments easy to find.) People you could not usually hear from turn out to have enormously interesting and helpful things to say — again and again and again.
A new example is the debate over vaccine safety. A 2007 book called The Vaccine Book: Making the Right Decision For Your Child by Robert Sears took a middle ground: A way that parents can space out vaccines. This seems to have offended Dr. Paul Offit, a vaccine inventor. With Charlotte Moser he wrote a critique (may be gated) of the book, just published in Pediatrics, that is actually an attack on it. Would the critique be full of well-reasoned arguments? New facts? Nope. It reminds me of my surgeon claiming that a certain surgery was beneficial and, when questioned, saying that of course evidence supported her claim but never producing any evidence. However, overstatement from doctors is nothing new. What’s new is the comments section on the critique (may be gated), which contains several fascinating observations.
From John Trainer, a family doctor:
[For Offit and Moser] to castigate [Sears] for offering information to the laity is to fall prey to the same mindset as the early church. By controlling access to the Bible, the leaders of the church exerted control over all.
From Corrinne Zoli, a Syracuse University researcher:
The vaccine debate plays out against a backdrop not only of facts vs. falsehoods, refereed vs. non- mainstream journals and studies, science vs. speculation, a complicated enough arena, but of conflicting cultural ’facts,’ which may be equally important as the science. For instance, parental concerns over the safe cumulative levels of thimerosal (ethyl mercury) in vaccines were unwittingly validated by the American Academy of Pediatrics (AAP) and the U.S. Public Health Service and others’ recommending their removal (which largely occurred in 2001)—even while these organizations were steadfast in public declarations of no causal link between the preservative and various neurotoxic or neuropathological ill-effects. What did parents learn from this decision? Aside from the fact that the preservative had been long removed in many countries of the world (i.e., the UK and even Russia), or that infants may have received doses exceeding EPA recommendations, they learned that organizations designed to serve the public trust were contradictory in their words and deeds. . . . The larger ’lesson learned’ by parents was to fear the decision making processes of medical and public health institutions and to become critically engaged with them using whatever tools at one’s disposal (i.e., online information, reading scientific studies, discussion groups, etc.).
Fifty years ago, when doctors wouldn’t justify their claims, you couldn’t do much about it. Few had access to medical libraries or the time to visit them. Now there is an enormous amount you can do. Water will simply flow around the rocks, such as Dr. Offit, who get in the way of better decisions.
This sort of open discussion is so helpful it should be standard scientific practice: allow your research to be commented on by anyone for anyone to read.
Tim Lundeen, whose fish oil/arithmetic results impressed me, recently tried taking benfotiamine (a fat-soluble version of thiamine) to reduce damage caused by high blood sugar. Things did not go as he expected:
I bought 100mg capsules from Life Extension Foundation, and starting taking 1 per day in the morning with breakfast. Over the course of 3-4 weeks, the two small dead spots on the bottoms of my big toes started to feel normal, and I didn’t notice them anymore when I went walking. My energy and general mood were good, and my fasting blood sugar readings were basically unchanged, staying in the 85-95 range. Scores on my daily math speed test were good, possibly slightly better than before.
Unfortunately, I started to gain weight, gaining about 10 pounds over the 10 weeks I took benfotiamine, without any other major changes to my regimen.
Weight gain was not a known side effect. For example, a 2005 study in which 20 patients received the drug for three weeks reported: “No side effects attributable to benfotiamine were observed.” This is on a web page that is trying to sell benfotiamine but there’s nothing unusual about the situation. Studies of drug efficacy are almost always done by drug companies that want to sell the tested drug. What is the term for such a side-effects reporting system? The fox guarding the hen house, perhaps?
It isn’t easy to measure side effects in conventional studies of treatment vs placebo. If you measure the rates of 100 possible side effects, and use a 5% level of significance, one or two true positives will go unnoticed against a background of five or so false positives. So a drug company can paradoxically assure that they will find nothing by casting a very wide net. And there is a larger and more subtle problem that statistics such as the mean do not work well for detecting a large change among a small fraction of the sample. If soft drinks cause 2% of children to become hyperactive and leave the other 98% unchanged, looking at mean hyperactivity scores is a poor way to detect this. A good way to detect such changes is to make many measurements per child. Many did-a-drug-harm-my-chlld? cases come down to parents versus experts. The experts are armed with a a study showing no damage. But this study will inevitably have the weaknesses I’ve just mentioned — especially, use of means and few measurements per subject. The parents, on the other hand, will have used, informally, the more sensitive measurement method.
For these reasons, I suspect drug side effects are woefully underreported. Here is the story of a child with a neurodegenerative disease that might have been caused by “the Gardasil vaccine (or perhaps some other vaccine with key similarities, such as an aluminum adjuvant).” Her parents are trying to find other children with similar symptoms.
The Food and Drug Administration has settled a lawsuit related to mercury in dental fillings. As part of the settlement, it will acknowledge that these fillings may harm some people. This is from an email by someone behind the lawsuit:
To change FDA policy, we tried petitions, Congressional hearings, state fact sheet laws, Scientific Advisory Committee hearings, and letters galore — to no avail. So in the great American tradition, we sued. The case came to a head this spring. On April 22, working with Johann Wehrle and Gwen Smith, I filed a motion for an injunction before Judge Ellen Huvelle. Three sets of briefs later, the government and I presented our oral arguments on May 16. In a crucial ruling, Judge Huvelle ruled that our 11 plaintiffs — the diverse group
listed below — have standing. She said FDA should classify, and invited the two sides to mediate. On May 30, before Magistrate Judge John Facciola, Bob Reeves (who flew in from Lexington KY) and I hammered out an agreement with FDAÂ officials and lawyers.The impact of the re-writing of its position on amalgam can hardly be understated. [A curious mistake: the writer means overstated.] FDAs website will no longer be cited by the American Dental Association in public hearings. FDA shows awareness of the key issues involved. As it prepares to classify amalgam, FDA has moved to a position of neutrality. Indeed, having repeatedly raised the question of amalgams risk to children, young women, and the immuno-sensitive persons in its website, I find it inconceivable that FDA will not in some way protect them in its upcoming rule.
Mercury fillings were once very common and are still common. Unfortunate that it took a lawsuit to get the FDA to change. Judges have little or no relevant experience understanding scientific papers. Scientific advisory panels have much more relevant experience. However, they suffer from a “purity” bias – they are evidence snobs.
After reading an excellent article about Craig Newmark by Philip Weiss in New York magazine, I turned to a New York article about controversy over how to deal with autism. (New York, you see, is more humble and thus more interesting than The New Yorker.) Its author, Andrew Solomon, who wrote The Noonday Demon, once wrote about the deaf rights movement. The neurodiversity movement is similar. What I found most revealing about Solomon’s article is the level of animosity he uncovered.
Researching this article, I spent a lot of time being talked at by people on both sides, one more doctrinaire than the next. Not since my early days reporting from the Soviet Union had I found myself so bullied about what I should and shouldn’t be mentioning.
It’s a kind of debate that didn’t happen until recently: on one side are parents who want to help their kids; on the other side are people who want more acceptance for autistic behavior. On the face of it they should be allies but in reality they are enemies. It reminds me of my complaint about how graduate students are trained (or rather not trained): they never learn to praise, to see what’s good about this or that study, so their natural inclination to be negative does a lot of damage.