aaaaarrrrrrrrggggggggghhhhhhhhhh!!!!!!!!!!

The Autoimmune Epidemic

While wandering the aisles in the local Borders book store, I saw Donna Nakazawa's new book, The Autoimmune Epidemic: Bodies Gone Haywire in a World out of Balance and the Cutting Edge Science that Promises Hope. This description is from the book's official site:

Multiple sclerosis, lupus, Type 1 diabetes, rheumatoid arthritis, and nearly a hundred other chronic autoimmune illnesses are part of this devastating epidemic, in which the human body, acting on misread signals, literally begins to destroy itself. Alarmingly, the occurrence of many of these diseases has more than doubled in the last three decades, signaling a disturbing trend that can be directly tied to environmental factors in everyday modern life—including our daily exposure to a dizzying array of toxic chemicals.

With the conversation around a recent post fresh in my mind, I was drawn to the book to see what the author had to say about autism in the context of this autoimmune epidemic. There is one section, consisting of two pages, where she mentions the possible relationship of autoimmune issues, vaccines, and heavy metals (specifically mercury in the form of thimerosol) to autism. I don't recall the specific wording, but she basically left it as, "We'll have to wait and see what comes of the research."

Has anyone had a chance to read this book yet? Any thoughts?

Not in my backyard: Vaccines, autism and acceptable losses

In her post The AAP vs. Eli Stone (January 2008), Ginger Taylor at Adventures in Autism tells the AAP that her son is not "an acceptable loss in the war against TREATABLE viruses" (emphasis hers). The steel trap that is my mind (ha!) remembered that Ginger had brought this up before when talking about vaccines. In Where I stand on vaccines (June 2005), Ginger wrote:

The CDC’s vaccine policy is based on the principle that the good done for the many outweighs the harm to the few. And that is fine if you are making vaccine policy for 300 million people. But I am not responsible for holding back another Rubella epidemic; I am responsible for two little boys who just may fall into that sliver of the population that the CDC considers an acceptable loss. (my emphasis)

An anonymous commenter responds:

YOU are not responsible, but you do share that responsibility with all of us parents. If enough parents assumed your attitude, pertussis, mennigitis, and perhaps even measles would make a deadly comeback. I'm not saying you must vaccinate, the risks/benefits must be evaluated carefully. But if you choose not to, please acknowledge dropping your share of responsibility for the good of all children for what it is - selfish. Please note that I do not consider selfish anything more than a decision taking only you or your children into account. It does not mean you are an all-bad person.

I've thought about this very thing quite often when looking at the vaccine question. Does any single parent have any responsibility to "hold back another Rubella epidemic?" I've come to the conclusion that no, they don't. Though the commenter takes great pains to say being selfish doesn't make Ginger a bad person, the fact that he had say that at all points to the general feeling that being selfish is bad.

But, and this is a big but, everything that everyone does is for selfish reasons. I've written about this before in the context of behavior in the world of business, but the general principal is the same. Every action that we take, or influence, or try to make happen, we do because we want a benefit for ourselves or someone we care about. The Founding Fathers of the US knew this fact, and they also realized that this is the only way it can be if the fundamental freedoms they believed in were to be realized. (This is also why you can't, and shouldn't, try to get rid of Congressional 'ear-marks' .)

The obvious pop culture reference here is Star Trek II: The Wrath of Khan. Spock was right that the needs of the many outweigh the needs of the few, but Captain Kirk was just as right - maybe more so, considering what happens later - in not accepting this "axiom" in this case.

The AAP, and others, have gone overboard over Eli Stone, if you ask me, but this is how it should be. I'd expect nothing less if the tables were turned and the proverbial shoe were on the other foot.

What would it take? (Or, Why the debate will never end)

Before you read the rest of this post, please take a moment (or, if you read as slow as I do, several moments) to read these two posts, by different authors, discussing the study Continuing Increases in Autism Reported to California’s Developmental Services System: Mercury in Retrograde and the accompanying essay Thimerosal Disappears but Autism Remains published in this month's Archives of General Psychiatry:

• Thimerosal Exposure Declines, Autism Rates Increase (Autism Vox)
• Making Sense of the California Autism Numbers (Age of Autism)

So, what do you think? Does the study prove anything? Disprove anything? If you believed before reading these posts that autism is caused primarily by thimerosal (or mercury in general), did reading these posts change your mind, or cause you to doubt that position? Conversely, if you believed before reading these posts that thimerosal / mercury is not a cause of autism, did reading these posts cause you to change your mind, or to question your beliefs?

On the Autism Blog at About.com, Lisa Jo Rudy hits the nail right on the head with this pessimistic (but unfortunately accurate) observation:

Knowing the autism community as I do, I find it hard to believe that these findings will change much of anything. Those who believe firmly that vaccines are NOT to blame for the rise in autism diagnoses will stand on these findings as proof positive of their claims. Meanwhile, those who believe firmly in the toxic nature of vaccines will continue to advocate for an end to required vaccinations - and for compensation for vaccine damage to their children.

In his article on Age of Autism, Mark Blaxill effectively quotes Karl Popper as a guide in his examination and acceptance of criticism to his theory:

He who gives up his theory too easily in the face of apparent refutations will never discover the possibilities inherent in his theory. There is room in science for debate: for attack and therefore also for defense...But do not give up your theories too easily--not, at any rate before you have critically examined your criticism.

But this then begs the question, at what point do you give up your theories. In discussing his conversion from atheism to theism (I believe Christianity, though he never comes out and says it) in his book There is a God, Antony Flew writes:

Now it often seems to people who are not atheists as if there is no conceivable piece of evidence that wold be admitted by apparently scientific-minded dogmatic atheists to be a sufficient reason for conceding "There might be a God after all." I therefore put to my former fellow-atheists the simple central question: "What would have to occur or to have occurred to constitute for you a reason to at least consider the existence of a superior Mind?"

Obviously, this question can go both ways, and can be applied to just about any partisan disagreement, including the one at hand. With that in mind, I'll rephrase the questions I asked above:

• If you believe that thimerosal is not a primary cause of autism, what would it take to convince you that it actually is?
• If you believe that thimerosal is the primary cause of autism, what would it take to convince you that is not?

Note: please don't respond with something along the lines of "nothing could make me change my mind because it is obvious that my belief is correct." If that it how you feel, then you don't have anything worthwhile to contribute to this conversation and I'd prefer it if you didn't clog up the comments.

The ideology and partisanship of autism

In US politics, we've got Republicans and Democrats, also known as the Conservatives and the Liberals. (Please feel free to substitute the two main political parties from your country if you are not from the US.) I don't know if the following is accurate, but I remember hearing it somewhere in the seemingly constant barrage of US election year news: 30% of the population is Republican, 30% Democrat, and 40% Independent. Kind of makes sense if you think about it in terms of the "bell curve" and normal distributions in a population.

I've come to think that the same may hold true in the world of autism ideology. I use the term ideology quite deliberately here. From dictionary.com, ideology is defined as:

• the body of doctrine, myth, belief, etc., that guides an individual, social movement, institution, class, or large group
• such a body of doctrine, myth, etc., with reference to some political and social plan along with the devices for putting it into operation

On the one hand, there is the ideology of neurodiversity, defined on wikipedia as:

...an idea that asserts that atypical (neurodivergent) neurological development is a normal human difference that is to be tolerated and respected as any other human difference.^[1] The concept of neurodiversity is embraced by some autistic individuals and people with related conditions, who believe that autism is not a disorder, but a part of their identity, so that curing autistic people would be the same as destroying their original personalities.

On the other hand there is the ideology that believes that autism is indeed a disorder, an abnormality in development caused by various environmental insults to a fetus or young child that must be cured in those that are currently affected and prevented in the future. The most commonly blamed environmental cause is mercury in the form of the thimerosol preservative used in vaccines, and more generally the large number of vaccines now on the vaccination schedule for young children. (The term "curebie" is sometimes used to describe this position. Although there is not an official "curebie" site like there is for the neurodiversity movement, check out The Age of Autism for more info on this position.)

Just like in politics these two "parties" have within them a broad range of beliefs, from the extreme ("all autism is mercury poisoning" and "society should accept and accommodate everyone, no matter how different") to the moderate ("we need to make society aware of the special needs of our autistic kids - and adults - and help those kids and adults make their way in the society to which they belong"). And, again like in politics, you have that overlapping area where the moderates of the opposing parties seem to be more like each other than the extreme element of their own party. (You may have noticed that I only gave one example of a moderate view, instead of separate ones for each party.) It is in this middle, the meeting point between the moderates of the two parties that you find the independents.

If you've read this blog for a while, you know that I fall somewhat in the middle, though I lean a bit more toward the neurodiversity side. But sometimes I get very frustrated at the whole discussion, the absolute statements from both parties that leave no room for deviation from the party line. I believe that this can be dangerous in politics, I also believe it to be dangerous in our efforts to understand autism and its affects on society. And at times, I feel like just dropping out of the discussion altogether because it just seems to be the same things over and over again.

But then I'll come across something like ...there of necessity will be much arguing from Dave Snowden of Cognitive Edge that makes me remember why I continue to write here:

If something matters, it is worth arguing about; consensus is for the ordinary and inconsequential things of life. Of course it does need good [wo]men if argument is not to degenerate into bitter polemic. Exploring ideas, supporting a position you do not necessarily believe in to test an argument, taking a contrary view for the sake of argument are all mechanisms by which human knowledge can advance.

I have seen the discussion about autism "degenerate into bitter polemic" all too often, and would like to think that I am one of the "good men" that help advance our collective knowledge about autism and what to do about it. I'm not much for New Year's resolutions, but for this year I resolve to continue the discussion, stir the pot, and keep the arguments as honest as I can.

Canaries in the coal mine

If you ask Dr. Bryan Jepson he will tell you why he thinks the "new" autism is different from the "old". As a medical doctor (now a Director of Medical Services) and parent of a young autistic son, Jepson has been doing some research lately and has come up with some (not always so) new ideas. Here are some excerpts from a story in the Deseret News (Utah) about Jepson and his new book Changing the Course of Autism: A Scientific Approach for Parents and Physicians:

Soon he was convinced that autism is a complex metabolic disease that has as much to do with the gut as it does with the brain.

It's an epidemic, he says, "and there's no such thing as a genetic epidemic."

At the same time, the "new autism" is less likely to show up within the first six months or year of a baby's life, and is much more likely to be "regressive," showing up at 18 months to 3 years to rob the child of previous skills — sometimes almost overnight, sometimes as a gradual decline.

There's a genetic susceptibility for autism. But something else has to explain the sudden rise in numbers — and it's not simply a matter of better diagnosis or a broader definition of what autism means, he says.

The answer appears to have something to do with the increased toxicity of the environment, he says, from food additives to vaccines and antibiotics. Children who are born with a genetic susceptibility for autism have trouble detoxifying, he says.

The increase in other chronic diseases such as asthma is evidence that autistic children may also be proof of what's to come, he says. "It's kind of like the canary in the coal mine." (my emphasis)

I know a lot of parents have turned to diet as a treatment for autism, but I don't know how many of them take it as far as Jepson does:

Calling autism a behavioral disorder, says Jepson, is like calling a tumor a headache. Instead, he says, autism is just one symptom of a disease process that affects the digestive, immune and neurological systems.

The majority of children with autism have gastrointestinal problems, sometimes causing severe pain. Their tantrums and head banging may be a manifestation of pain they can't articulate, Jepson says. If the gut disease is treated — with diet, nutritional supplements and medication — that behavior goes away.

The benefits of changing diet and the question of whether stomach issues are a cause of autism or simply a co-morbidity have been discussed ad nauseum over the past several years in the blogosphere, as well as other books addressing. The reviewers on Amazon seem to love it (7 reviewers, average rating of 5 stars), but I wonder if they really found it that good or if it was just something that justified an opinion they already had.

I'd be interested to know (without having to read it, my list is already too long), if this book brings anything truly new to the debate. (Aside, of course, from the obvious belief that autism is a symptom of something else and not a condition of its own.)