OUT OF AFRICA (AND INTO THE STATE OF DENIAL)

Nobody writes about autism issues better than Mark Blaxil when he's on a roll. And he's on a big-time roll over at Age of Autism, writing about how the Minnesota health authorities are not surprisingly burying their collective heads in the sand rather than ask tough questions as to why the autism rates are so high among Somali refugee families in Minneapolis. Check it out here.

DON’T STRETCH OUT THE SCHEDULE; THERE’S TOO MANY MORE TO BE ADDED

A television station in San Diego recently ran a balanced story on the growing use of alternative vaccination schedules. And whom do you suppose the American Academy of Pediatrics got to tell us all that it’s all a lot of hooey and we should just shut up and listen to the authorities? Why, it’s our old pal, Paul Offit!

There’s really no need for me to take on Dr. O this time; Ginger’s already done it. You can find her post and a link to the video here.

AGAINST MEDICAL ADVICE

I was approached a little over a month ago, and was asked if I would be interested in reviewing a new book, Against Medical Advice (Little, Brown and Co., 2008). In the email I got from the publisher’s representative, I was told that I, and visitors to my blog would “find it very relatable and moving.” [Disclosure: I was sent a free copy of the book in order to read and review it.]

The book is written by James Patterson, the well-known novelist (Kiss the Girls; Along Came a Spider), and an old friend of his, Hal Friedman. Despite Patterson’s background as a writer of thrillers, this is a piece of nonfiction. It tells the story of the struggle by Friedman’s family to deal with “an agonizing medical mystery:” his son’s Tourette’s Syndrome.

I’ve been struggling with this review ever since I read the book. It’s not that I didn’t find it “very relatable and moving;” I did. I think it’s a very good book that’s well worth the time spent reading it. It’s just that I wanted to like it a whole lot more.

The book’s strong points are also its weaknesses. The story is told not from the standpoint of Hal Friedman or his wife, but rather it’s written as if by his son, Cory. This was done with the full cooperation of Cory (now a young adult), and is seemingly based in part on his own writings. Presenting the story with Cory’s point of view, filtered through the fast-paced style of an experienced novelist, takes the reader on a harrowing ride through what can only be described as Hell.
And Hell it was for Cory. His Tourette’s has unique aspects (some would call them comorbidities) that befuddled the “experts,” and made everything that much more difficult:

In sophomore year, it’s becoming clear that obsessive-compulsive disorder, or OCD, is a bigger part of my condition than we thought. Right now I’m mostly experiencing the kind of OCD they call intrusive thoughts ⎯ ideas that can take over your thinking. The worst thought I have now is that there’s no point to anything in life. This obsessive idea has suddenly paralyzed my desire to do anything . . .

The fact that the focus is on Cory’s own Hell rather than that of his family keeps it from becoming a “pity party.” On the other hand, knowing that the book was written as nonfiction by experienced writers makes the use of Cory’s point of view to be almost gimmicky at times. Moreover, there’s a lack of perspective, which can be somewhat effective but leaves the reader wanting more information that actually comes through.

And it’s that lack of information that is somewhat maddening. There are gaps in the chronological narrative that leave many questions unanswered. And indeed, one of the central questions the book raises ⎯ why Cory got better ⎯ is answered only by the educated guess of Hal Friedman in one of the few passages not told in Cory’s voice.

Enough information comes through, though, to make clear the real theme of the book: that the medical establishment the family relied upon to help Cory deal with his condition did nothing but make things a whole lot worse.

After years of being moved from one pharmaceutical to another, with ever-increasing dosages, Cory eventually resorts to self-medicating with alcohol. After a particularly bad episode involving alcohol, Cory wrote a long letter to himself, that includes the following:

Am I insane? It would seem so. I can’t stop hurting myself.
My parents don’t know what I’ve gone through. If they did, they’d be saying every word to me as if it were their last.
I deserve the world.
And I am stronger than the worst things that happen to me.

That episode is the turning point of Cory’s life. In the view of Hal Friedman, in the only chapter written in his voice rather than his son’s, Cory’s “recovery” comes about because “he made the decision to change.”

At some point, Cory’s parents joined in that decision as well. The opening chapter of the book relays the incident from which the title is drawn. Mr. and Mrs. Friedman are checking their son into a rehab facility to combat the alcohol addiction that is claiming their son. Cory is the one who recognizes that particular institutional setting will be a huge mistake, and he pleads with his parents to not leave him there. For the first time, the parents decide to trust their son’s instincts rather than the mainstream medical advice that has led them from one pharmaceutical product to another. They leave “against medical advice.”

Unfortunately, it is hard to tell just where that incident falls in the otherwise chronological narrative following that chapter. As most of the latter part of the book details Cory’s success with various programs and strategies, more context would have made that section stronger.

As I mentioned, the only part of the story told from the father’s perspective consists of a five-page epilogue, indicating that Cory’s improvement is attributed to Cory’s desire to get better, and also to the elimination of the “medications prescribed in good faith but with unhappy results.” Although Mr. Friedman uses the word “recovery,” it is acknowledged that Cory still experiences many clinical manifestations of his Tourette’s. It is unclear how much of Cory’s “recovery” is due to an acceptance of the level of the syndrome Cory lives with in the absence of the aggravating factor of being treated as a walking pharmaceutical experiment.

At 269 pages (not including some appendices), the book is a little on the “light” side. I think some time could have been devoted to the parent’s experience (including their expectations) without removing the focus from Cory. Moreover, giving voice to the parents might have made the representation of Cory’s perceptions to be less awkward.

All that being said, I liked the book ⎯ just not as much as I wanted to. Its flaws notwithstanding, it’s a good read.

. . . AND HERE'S YOUR CONDESCENSION

As a follow-up to the last post about the outbreak of ASD among the children of Somali refugees in Minneapolis, Age of Autism has posted accounts by both David Kirby and Nancy Hokkanen regarding a recent forum involving heath officials in Minnesota and the Somali families (here and here). Not surprisingly, most of the officials spent their time refuting any connection between the numerous vaccines the children were subjected to in the United States that they did not have to take in Somalia. Their stating that opinion is not really a problem; I certainly would not want anyone to refrain from doing so. What bothers me is the condescension shown toward the families.

Families complained about the fact that they really had not been told anything they didn't already know, and that there was no plan discussed to discover what the problem is if it is not vaccines. But the real indication of a lack of concern is that the health officials had, for the most part, disappeared by the time the parents presented their own panel. The Minnesota health commissioner had started the day off by declaring: “Today is the start of a dialogue, of listening to your concerns and frustrations, and looking for solutions together.” Words like that can be empty in any language.

WELCOME TO THE UNITED STATES; HERE’S YOUR AUTISM . . .

David Kirby has a new piece on the Huffington Post, looking at the development of autism in American-born children of Somali refugees in the Minneapolis area. Those families are now seeing an ASD rate that is truly alarming: one-in-28.

Not surprisingly, many of the affected families are focusing on one of the aspects of American life that is different than their native country: the vaccination program. Mr. Kirby covers that, and also one hypothesis addressing what might make for the difference among the Somalis. Dr. Gregory A. Plotnikoff, medical director for the Institute for Health and Healing at Abbott Northwestern Hospital, believes that the move to an area at a higher latitude has had an impact on the Somalis, who may have a naturally lower ability to produce Vitamin D. And the decreased Vitamin D levels translates to less creation of glutathione in the body, and that deficiency makes it more difficult for children “to handle heavy metals and oxidative stress.” (I need to point out that potential exposures to heavy metals and oxidative stress may include vaccines, but are certainly not limited to them.)

It should go without saying (but I’ll say it anyway) that the Somali cases ⎯ at this point anyway ⎯ are nothing more than anecdotal, and prove nothing. But as I have tried to point out before, anecdotes are an important part of any scientific inquiry. They signal the need to ask particular questions. And the questions in Minneapolis require the full attention of the scientific and medical communities.

Unfortunately, the medical establishment is predictably slow in responding. At least one mother states that she brought the Somali-autism problem to the attention of state and local health officials as early as April, 2007. Those pleas for help were ignored until the news media began to ask questions. Now the state’s health department has assembled a team under an epidemiologist. That team will soon be meeting to discuss what they need to do to figure out if there is even a problem that needs to be studied.

In the meantime, many of the affected families are returning to the country they came here to escape.

OF RED HERRINGS AND STRAW MEN

I always wince a little whenever I see phrases like “red herring” and “straw man” bandied about in our little internet discussions. I always get the impression that the person using such a phrase is more interested in scoring debate points than he/she is in actually listening to the other side. So it is with great irony that I find myself writing these words.

Our old pal, Dr. Paul “I’m not really interested in the millions I’ve made; only in your children” Offit recently published his latest manifesto, entitled Autism’s False Prophets. As I mentioned in my last post, I don’t intend to review the book, as that would involve actually purchasing it. But I am fascinated by the recent media coverage surrounding the release of the book.

The press seems content to accept at face value Doc O’s pronouncements that there have been all those epidemiological studies that refute any connection between the increases in the vaccine schedule and the rise in diagnosed autism spectrum disorders. After all (insert sarcastic tone here), it’s far too difficult for the average reporter to actually look at the studies and see what was actually being measured, or even to find the various published critiques of those studies. And surely kindly Dr. Paul wouldn’t mislead anyone by asserting that there is absolutely no scientific evidence to suggest the possibility of a connection. (For the umpteenth time, let me emphasize here that I do not believe the connection has been established beyond doubt, but I do believe that there is enough clinical and biological evidence to warrant a lot more study).

No, the press isn’t interested in taking a critical look into the science. They aren’t asking why a pediatrician who has never been active in the treatment of autism should be considered an expert in causation of autism. And they sure aren’t troubled by the vested interest Paul Offit has in absolving vaccines of any guilt in being one of the possible triggers of the ASD epidemic. But what they are interested in is lurid details that have nothing whatsoever to do with Dr. Offit’s thesis ⎯ that’s right, a red herring.

Reportedly in his book, and certainly in his interviews, Dr. Offit has alleged getting hate mail, assaults, and even death threats. He specifically has spoken of getting an anonymous phone call, mentioning the name of one of his children and the name of the school the child attended. Now before I go any farther, let me emphasize that nothing could possibly condone that kind of conduct. If Dr. Offit did indeed receive such threats, I would certainly hope that the authorities aggressively investigated the incidents. No matter who is the recipient of such threats, I would hope that the perpetrators are found, prosecuted and appropriately penalized.

It’s terrible that I have to show any skepticism as to Dr. Offit’s veracity, but let’s face it, we only have his word for it and he’s not someone that I find very credible. But assuming arguendo that there is at least some shred of truth in what he’s reporting, the question arises: what does that have to do with whether overvaccination and/or vaccine components may be a potential trigger of ASD.

Yes, I get it. This is an emotional subject for many of us, and part of Dr. Offit’s argument is that we are so blinded by our rage that we are willing to listen to the “false prophets” instead of the “real doctors” like him. Bullshit! That does nothing to prove that Paul Offit is right; it is merely a red herring that he threw out as bait for a ravenous press, and they bit down hard.

As at least one story by ABC reports, there has been an ugliness to the debate that goes beyond the bounds of decency. The ugliness extends to both sides. One TACA representative recounted being labeled a “baby killer.” I can relate to that. I’ve been called a child abuser because my wife and I choose to attempt curing our son of the disabling aspects of his ASD, and I’ve even been called an accomplice to murder because I dare to talk about biomedical interventions in public. I’ve never received anything that I would consider to be a credible threat to my safety or to the safety of my family ⎯ but it would only take a minor bit of exaggeration to imply the existence of threats.

Is Paul Offit exaggerating when he describes the threats to his and his family’s safety? I hope so; I really don’t want to believe that anyone’s safety has been placed in jeopardy because of participation in our little debate. And as I have said, if threats have actually been made, I truly hope enough of a trail was left so that the authorities can take appropriate action. But again, real threats would not make Dr. Offit right.

For some reason, the issues of cure (and I always feel the need to clarify that I view that concept as a process rather than a result) and the potential connection between vaccinations and the triggering of ASD wind up creating a passionate debate in which there is no middle ground. All too often the words that are used can easily be termed “hate speech,” and gas is thus poured onto the fire.

To be sure, that gas has been thrown by both sides. On “our side,” there was a blogger named John (he probably still has a blog, but his irrelevance has finally caught up to him) who regularly engaged in the worst imaginable hate speech. Some on the “other side” called upon me, on multiple occasions, to disassociate myself from John. And on multiple occasions I made clear that I saw no need to disassociate myself from someone with whom I did not associate in the first place. I went so far as to warn one of the prominent voices from the “other side” that he and his friends were spending too much energy directing hatred at that blogger, and they were making John a much more important figure than he otherwise would be.

Ironically, those people who railed at John were the same ones who forever scream at the logical fallacies they believe they can spot in others arguments. And here they created the ultimate straw man to try and knock down. I’m still not certain that the creation of that straw man was not intentional, so that there would be an easy target to direct hate at. Likewise, I’m not at all sure that the focus on the alleged threats against Paul Offit ⎯ which threats may or may not be genuine ⎯ is not intentional. Threats are a sexier issue than sufficiency of science, and there is no bait the press enjoys more than fresh red herring. As long as the press is biting down on that bait, they’re too busy to ask real questions.