Tuesday, January 26, 2010

HERE I GO, RAILING AGAIN

Fairly soon after our open letter to the Chicago Tribune (see last entry) was reposted at Age of Autism, some fellow by the name of Prescott Carlson posted a criticism at Chicagoist. That entry, entitled Parents of Autistic Boy Rail on Trib for “Editorial Bias,” referred to the letter as a “lengthy screed.”

Reading through Mr. Carlson’s brief post gave me the distinct impression that somehow the meaning of our letter had gotten lost, and that left me in a bit of a quandary. I felt an explanation was in order (even though the letter itself was already pretty clear), but a real explanation needs a little length, something which Mr. Carlson apparently disapproves of. So it would be rude to post a lengthy explanation as a comment at the Chicagoist, but here, on my own blog, I can be as long-winded as I please.

Length of prose is always a delicate matter of balance. Too short, and the message might not be clear. Too long, and some readers might focus on individual trees rather than the forest. Such is the case here. Mr. Carlson stated that we:
accuse Tsouderos of “[straying] from the principles of balance, fairness, and the truth” in her articles, and even hinted that the Trib's deciding to focus on the subject at all was misguided, saying:
The articles by Ms. Tsouderos were given front-page treatment, including the latest, which came at a time when every other organ of the press was focused squarely on the recent tragedy in Haiti.

We did not attempt to imply that the Tribune’s exploration of the issue was “misguided.” Had that sentence been read in the context of the complete paragraph from which it was cherry picked, the point becomes obvious. Believing that the OSR story (or non-story depending on one’s opinion) was more important than the tragedy in Haiti is a bit ridiculous, especially when the same paper has yet to devote any appreciable space anywhere in the front section to the latest CDC numbers released in December.

The Tribune is unwilling to acknowledge there is a public health crisis, but they are sure willing to say they know how not to treat the non-crisis. That is not just an editorial bias; it is nonsensical.

Moreover, the Tribune reporters have gone about their work in an intellectually dishonest manner. I spoke to one parent who Ms. Tsouderos interviewed for one of her early stories; that parent felt she had been lied to by a reporter who kept leading her into statements that did not reflect what was truly intended.

And it’s not just parents Ms. Tsouderos misquotes. As was noted in our letter, a distinguished physician and scientist at Harvard, Dr. Martha Herbert, complained about being quoted out of context, resulting a misleading expression of Dr. Herbert's opinions. But accurately quoting Dr. Herbert or any of the other qualified doctors and scientists who are looking into potential treatments does not serve the Tribune’s bias. It’s far easier for them to paint a picture of Dr. Boyd Haley as a snake-oil salesman than it is to acknowledge his extensive qualifications and his solid research.

I generally try to steer clear of discussing specific interventions and protocols we use. I will say that, based on what we have heard and seen, the Lupron protocol and OSR #1 (both of which were the subjects of Tribune smear pieces) may be appropriate treatments in particular circumstances. Each autistic child presents a unique clinical picture. What is right for one is not necessarily right for another. Whether a particular intervention is appropriate for an individual depends on the nature of the problems underlying the autistic symptoms, and should be chosen after a careful weighing of potential benefits against risks.

The Tribune, however, is not interested in the successes of our families, as they do not sell papers as well as sensationalism does. Nor is Ms. Tsouderos interested in the successes parents have had. For it’s far easier to get promoted to science reporter from the entertainment beat if you write a sensational exposé rather than a human interest story about families helping their kids.

It’s all a matter of proportionality. One of the comments left at the Chicagoist illustrates the lack of recognition that the Tribune’s articles are far too choosy in picking their targets. Somebody using the handle “Ward Up,” wrote:
The Rankins are frustrated and that is understandable. However, their frustration should not trump scientific evaluation.
If an autism drug has not been proven in a randomized, prospective trial, then that drug cannot be recommended by the Tribune or by anyone, for that matter. Doing so would be a disservice to families of children with autism.
The Tribune deserves praise for its articles on this subject. We need more light shined on these therapies to separate effective medicine from snake oil.

You know what’s frustrating, Ward? I’m frustrated that the same people – like Ms. Tsouderos, Mr. Carlson, and well … you – are so willing to decry so-called “alternative” therapies, but very few of you seem to have a problem with the all-too-common pediatric practice of prescribing Ritalin, Risperdol or even Prozac to autistic children under the age of five. Those are off-label uses of very dangerous controlled substances, and yet the FDA and AAP seem to condone it. Where is your outrage about that? Where is the Tribune’s exposé on that?

There’s nothing at all wrong about reporting on a controversial issue and newspapers are allowed to have an editorial bias. That all adds to a healthy debate of issues, which was certainly contemplated by the drafters of the First Amendment. Part of the bargain, however, is that the issue needs to be presented fairly, accurately, and completely. The Tribune reneged on its part of the compact between itself and its readers, and that was our complaint.

8 Comments:

Anonymous Anonymous said...

I can testify that the Chicago Tribune is very selective about what they report, especially in regards to matters involving health care.

I tried in vain, for a considerable amount of time, to inform both Bruce Jepson, the Tribune's health business reporter, and the health care lite reporter, Judtih Graham, about the well documented wrongdoing that I had encountered via my folks' Medicare Advantage HMO and the Centers for Medicare amd Medicaid Services. (Currently, Graham appears to merely rewrite press releases sent to her by health related businesses, such as hospitals.)

I was not seeking publicity, however, I thought that it was important to report on how the regulations that were established to protect Medicare Advantage beneficiaries from being denied necessary health care, were not being enforced.

Neither Jepson or Graham thought that such a thing was a big deal.

Then one day, several years ago, the Tribune endorsed requiring mandatory health insurance in Illinois, like in Massachusetts. I wrote a letter to each member of the editorail board, asking how they could justify such an stand, considering that their reporters did not deem it important that having health insurance does not mean getting the appropriate health care.

I did not expect to receive a response from anybody, and I was right.

John H Olsen

1/26/10, 4:06 AM  
Anonymous Anonymous said...

PS

http://healthcaregrief.blogspot.com/

JHO

1/26/10, 4:09 AM  
Blogger redhead said...

I am not familiar with the Chicagoist or Prescott Carlson but it is interesting that they have this on their blog. Kind of hard to be objective and unbiased when the big boys like you. Period:

"The Chicago Tribune featured Chicagoist in an article on blogs and Richard Roeper calls Chicagoist one of his "go-to sites". The Tribune also called Chicagoist "One of Chicago's best blogs. Period."

1/26/10, 8:37 AM  
Blogger Wade Rankin said...

An "old friend" decided to weigh in on this in his own blog. Although he's never moderated any of my comments before, I thought I'd be on the safe side, and post my response here as well.

Well, Kev, it’s nice to know you still come over to read my stuff sometimes. It’d be even nicer if you got it right.

I’m sorry you don’t seem to get the point, but then again our opinions on journalism differ almost as much as do our opinions on the causes and treatment of autistic symptoms. After all, you seem to feel that Brian Deer is a great journalist.

Although I hesitate to get involved in what we call “a pissin’ contest” on this side of the pond, I do feel it necessary to correct a few inaccuracies in your post.

You imply that some change came over me after we moved to the Chicago area, and I became acquainted with Eric Nanstiel and David Ayoub. The only part of that you got right was that we moved to the Chicago area.

I am proud to call Eric a friend, but we were that long before we moved from Louisiana. I have neither met nor spoken to Dr. Ayoub, although I would certainly welcome the opportunity to do both. The fact is, my general opinions and beliefs on biomedical interventions were in place long before we came up here, and long before we stopped communicating with each other. Indeed, if you look at my earliest posts, you’ll see those opinions and beliefs were in place before you and I knew of each other’s existence.

Although I certainly recall fondly our correspondence (both public and private), the end came not because of a difference on those core issues, but rather because the tenor of the debate had turned quite nasty. Specifically, you were upset that I would not “disassociate” myself from a sad little man with whom I was never associated in the first place. (Indeed, I pointed out to you in an email exchange that you had managed to make him far more important than he really was, as his credibility within the biomedical community was nil; your response was “perhaps you’re right.”) In turn, you seemed to have no problem at all with just how uncivil the debate had become on many of the Hub blogs.

I try not to comment too much on the specific interventions we use with my son. I’m leaving it up to him to tell his own story when he gets a little older. (I have always appreciated your respect for my son’s privacy, and I have always tried t honor your daughter’s privacy as well.) But I can say that we have utilized many biomedical approaches that you disapprove of. That is nothing new; we were doing so before you and I “met.”

Is my son “cured?” Well, not in the conventional meaning of the word. As I have consistently said, cure is a process (and a damn long one at that) and not a result. But the progress of his recovery has been remarkable. A child who was said to be doomed to institutionalization is functioning quite nicely and independently. Would he have made the same progress without biomedical interventions? Based on the timing of particular developments and test results, I have to emphatically say “no, he would not have.” His is a story of continuing success, and as I said, it is a story he some day will be able to tell himself in his own words.

In short, old friend, do not hold any pity for us. We have never particularly cared for pity parties. We are people of hope.

1/26/10, 8:51 AM  
Blogger Jeff said...

I wonder if you'll respond to the comments on the Chicagoist article accusing you of setting up a strawman argument?

1/26/10, 12:41 PM  
Blogger Wade Rankin said...

Jeff,

I don't particularly see the need to do so. If one simply reads the original letter, the point I was trying to emphasize -- which some people seemed to be missing for some reason -- should be obvious. It's not a straw man argument at all (in my experience, most people who constantly throw around the names of logical fallacies rarely understand what they truly are).

1/26/10, 2:32 PM  
Blogger Anne said...

"Whether a particular intervention is appropriate for an individual depends on the nature of the problems underlying the autistic symptoms, and should be chosen after a careful weighing of potential benefits against risks."

Agreed. So, how does one weigh the potential benefits of OSR#1 against the risks? Where is the information about the benefits? Where is the information about the risks? Where can I look for information that would assist me in determining whether to give OSR#1 to my child?

1/26/10, 4:09 PM  
Blogger EdR77203 said...

Wade,

My son went from unable to add past 5 without counting on his fingers to studying electrical engineering in college here in Denver. I watched him go from being dragged through homework each night to doing it on his own with two week's treatment.

If I listened to the medical community he would be on drug cocktails of risperdal, wellbutrin, lithium, prozac and anything else that they wanted to experiment with.

I may have been navigating using geocentric theory, but there is no denial that my son has moved away from the pit he had been in before.

1/26/10, 10:00 PM  

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