Monthly Archives: November 2011

Investigative Journalism, Part Two

Posted on by findingmykid
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In yesterday’s post I described three articles that have appeared in the Chicago Tribune. The first, published two years ago, questioned the scientific underpinnings of ASD treatment and profiled the case of an apparently (?) recovered seven-year-old boy whose father contended that the boy would have progressed without, and may have suffered (yet unmanifested) harm from, biomedical interventions. The second and third articles, published last month, reported that this father’s complaint against Dr. Anju Usman, one of the boy’s treating physicians, had led to medical board charges against her. They also provided the detail that the boy’s treatment had been the subject of a divorce proceeding in which his mother, who supported the biomedical interventions, had lost custody.

Today I’m writing about the effect that such an article has on a parent undertaking a recovery journey. Specifically, this parent. Me.

I’ve made no secret that we’ve chosen an arduous path. Treating ASD biomedically means we’re raising Martin inconveniently. We’re navigating 21st-century America without processed or packaged foods, tap water for drinking or cooking, a microwave, grains, sugar, non-organic products, or restaurants. Martin swallows a lot of supplements—I’m not going to claim “six pills at once,” like the father in the Tribune article, but enough—and participates in 16 HANDLE exercises daily. We do RDI. It’s so much that, any moment when I’m not marveling some new achievement, I’m probably contemplating giving up.

Which means that during the past three months I’ve had a lot of time to contemplate giving up.

When I do research about Martin’s treatment, I seek out multiple sources and do my best to weed out bias, hyperbole, and blanket statements. When I speak with Martin’s practitioners, whether Track One or Track Two, I attempt to engage in dialogue: question, answer, challenge.

A mainstream-newspaper “investigation” is a different sort of animal. Because of their stature, we count on the big sources to do our homework for us, to examine every side and summarize fairly. To question, answer, and challenge without our participation. I studied magazine journalism as an undergraduate, and I remember this rule: When you’re going to write a major article, for that moment in time, you must become the world’s leading authority on your topic. In my mind, before the Chicago Tribune reporters sat down to write their original piece, they should have been the world’s leading authorities on biomedical ASD recovery.

And when the world’s leading authorities say a process is “dubious” and “unsupported,” that’s a pretty good reason to quit, right? Especially if the process is taking a toll on you like none you’ve ever known.

I admit that I hesitated, even, before sending last month’s Tribune articles to Adrian. I feared that they might make him want to quit. (A fear unwarranted: I sent them, we discussed, and Adrian remains as dedicated to Martin’s recovery as ever.)

And now I worry that those articles, and the actions of the Illinois medical board, might make other families want to quit. Goodness knows we’ve got the deck stacked against us as it is.

I can’t tell other families whether to continue biomedical recovery or to quit. I would never try. Heck, I don’t even know where my own family’s journey will end.

I can say that I don’t think the Tribune reporters became the world’s leading authorities, or if they did, they failed to demonstrate that. I know at least one family who allowed one of the reporters to meet their fully recovered son, whom Dr. Usman had treated. I saw no mention of any such families in the articles. I saw no investigation into whether (as I thought the articles may have hinted) the father’s complaints simply arose within a divorce context, or were instead prompted by that context. The Tribune presented the incompetent actions of rogue DAN! doctors; it made no mention of the compassion of competent biomedical-recovery practitioners.

All in all, I thought it was lopsided reporting.

But to a parent who’s desperate, and exhausted, lopsided reporting might just suffice to make you throw in the towel.

That, I think, would be a sorry effect.

Investigative Journalism, Part One

Posted on by findingmykid
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[This post has become long, so I’ve decided to break it into two parts, to avoid losing readers halfway. The second part will appear tomorrow.]

Several readers now have asked my opinion on a recent Chicago Tribune article about Dr. Anju Usman.

I have an opinion.

Let me start by saying that, although I know her work by reputation and from speaking with parents whose children recovered under her care, I have never met Dr. Usman. She is not Martin’s excellent Track Two doctor. I lack any particular expertise for interpreting this story. I derive my understanding of the facts from the Tribune (what there is written, and what thence is missing), and have formed my opinion from own experience.

Here is the Tribune saga, based on what I’ve read: Almost two years ago, as part of a series called Dubious Medicine, the newspaper conducted biomedical ASD interventions and published its findings under the title “Risky alternative therapies for autism have little basis in science.” The article highlighted its conclusion up front, namely, that “many of these treatments amount to uncontrolled experiments on vulnerable children. . . . And though some parents fervently believe their children have benefited, the Tribune found a trail of disappointing results from the few clinical trials to evaluate the treatments objectively.”

The role of human-interest centerpiece in the Tribune’s initial story was played by a then-seven-year-old Chicago boy, a years-long patient of Dr. Usman and of Melbourne, Florida’s Dr. Daniel Rossignol. The article begins with the boy’s father, who opposes biomedical intervention, bemoaning his son’s ability to swallow six pills at once. Near the end, however, after its indictment of autism recovery science, the article takes a befuddling turn. The boy at age seven is described as “playful, funny[,] and outgoing”—which to me sounds a lot like “recovered.” The boy’s unnamed mother, according to the Tribune, “declined to be interviewed but [] said in court documents that she believes the boy’s many alternative therapies benefited him [and] argued that her son’s treatment must continue on a regular basis.” The father, by contrast, “said he [thought] his son . . . would have progressed developmentally without any medical treatments” and filed complaints with the state medical boards against Dr. Usman and Dr. Rossignol. He told the Tribune, “I worry very much. There may be latent physical harm. We don’t know.”

Fast-forward to last month. The Tribune ran back-to-back articles on Dr. Usman. The first, “Illinois regulators seek to discipline autism doctor,” reported that this father’s grievances had led to the Illinois Department of Financial and Professional Regulation charging Dr. Usman with “unprofessional, unethical and/or dishonorable conduct” and seeking suspension or revocation of her medical license. It noted as well that the father had in fact sued Drs. Usman and Rossignol, a case that apparently is pending in the Circuit Court of Cook County.

The second article, “Illinois medical board files complaint against star autism doctor,” was similar to the first, with some more detail on that complaint. More interestingly, from my perspective, it included this detail:

The treatments that [the father]’s son received were also the subject of a bitter divorce and custody battle between [the father], who vehemently opposed the therapies, and his wife. She had been a proponent of the therapies for the boy, according to divorce court records. [The father] and his wife divorced. [The father] was awarded residential custody.

If any of the feared “latent physical harm” had evinced itself in the boy, the Tribune makes no mention thereof.

The Tribune articles supply much potential fodder for this blog—like the science underlying autism recovery, and laboratory studies versus field work; how prosecution of heterodoxy curtails the ability to pursue alternative treatments; reporters’ influence on the way we interpret the world. (The also supply much fodder less appropriate for the blog—like the validity of a medical-malpractice lawsuit absent any manifested harm, or the ways a divorcing couple can entrap third-parties into their own anger.) I’m not going to pursue any of those topics.

Instead, tomorrow, I will address the effect that stories like the Tribune’s have on me and, I would guess, others in the thick of a biomedical recovery journey.