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Sep 29

Health Warning: Don’t Swallow Churnalism Whole!

This post is a commentary inspired by a brilliant essay by Emily Willingham. Brilliant in the British sense. Well, in the American sense, too, actually. In fact, all her essays are brilliant  it’s just that this one caught my eye a couple of weeks ago because of something that was in the news, and I’ve reread it several times since.

She warns us of the tendency of some lazy journalists to simply repeat what is in a press release, perhaps even linking to sites that are little more than advertisements. She mockingly calls this churnalism. The particular study she dissects in her post relates to autism and mice. Along the way, she makes several observations that are gems, and I share some of them here with you. If you find these interesting, you will love the full write-up by Emily.

In her first major put-down, Emily translates the sales pitch of the press release into plain language:

Professors … have identified a specific dysfunction in neuronal circuits that is caused by autism. …the scientists also report about their success in reversing these neuronal changes. These findings are an important step in drug development for the treatment for autism.

She tackles the “cause” thing later on, but first gives the translation:

What the researchers really found was that taking mice that don’t make neuroligin-3 and giving them neuroligin-3 mitigates the behavioral signs the mice showed because they lacked neuroligin-3.

I’m sure you can see the equivalence of these statements.

Continuing her snark explanation, Emily quickly makes an important point about autism:

…the protein [neuroligin-3] has been implicated in some forms of autism that are heritable. …what we call “autism” comes in many forms, probably by way of many pathways, with a huge range of manifestations in different areas. … In other words, the six letters in the word ‘autism’ represent volumes of variability in human expression.

This is a critical concept on the path to understanding the mystery that is autism. As I learn more and more about autism, I realize what a short distance we have traveled on that path. One thing that is becoming clear to neuroscience, I believe, is the fact that autism should not be described as a “spectrum” (in the sense of a continuum) because, as Emily says, autism comes in many forms.

Emily then pauses in her deconstruction to give credit where credit is due.

What the authors of this study really did that was worthy of publication in Science–and it is interesting–was show that the brain after birth is still open to targeted interventions that alter function. …the real take-home is what [this research] shows about the malleability of the mouse brain.

This finding is entirely consistent with the growing awareness and even amazement among neuroscientists that the human brain (and presumably the mouse brain, too!) is much more plastic (changeable) than had been known until quite recently. I have participated (as a subject) in brain research that has shown (definitively, from what I’ve seen, though I don’t think the results have yet been published) that autistic brains are much more plastic than typical brains.

The topic of brain plasticity deserves its own post, so I won’t digress further except to say that the understanding of this difference may lead to explanations for some of the differences that autistics experience (some good, some not so good), such as sensory overload and learning style.

Emily returns to her critique of churnalism by noting the seemingly inevitable morphing of a research abstract that barely mentions the hope of a human connection to a press release that emphasizes that angle, to a Wall Street Journal article that sorta forgets to mention (at least in its lede) that the research took place on mice.

Roche Holding AG, a Swiss drug maker, and the University of Basel’s Biozentrum said Friday the study identified a way to reverse a dysfunction in the brain’s wiring typically caused by the disorder [autism], which stumps intellectual development and can cause aggressive and anti-social behavior, and becomes evident in early childhood.

In my view, autism is not a disorder, but a different way of being in the world. I’ve written about this before, and I have much more to say. I do not wish to minimize the difficulties that autistics face, living in a world that was not designed for us, and putting up with the very real consequences of the stereotypes, myths, and misunderstanding of autism that are prevalent in our society. Emily parses the quotation just given to show how much mischaracterization can be packed into a single paragraph!

“Stumped intellectual development” is not a sign of autism. … Autism [is] not identified with “anti-social behaviors” but rather with social communication struggles. Not the same thing. How to describe autism in a few words? “A (neurobiological) condition of varying intensity (and likely causes) that involves difficulty with social communication.” Parentheticals optional.

Also

This study does not show that the ‘disorder causes the wiring’, rather than the likelier ‘wiring’s causing the disorder’…

Emily goes on to point out the long road between a research study such as this and the development of a pharmaceutical aid. The odds are, nothing will come of it, and even if it did, the end product might take a dozen years of further research and testing. But that does not stop the hype. I suspect research grants are not often given to scientists who say they want to study how the mouse brain works.

Emily’s post is followed by a dialog with a commenter that is intriguing. One of the threads in that discussion centers on the question of the prevalence of autism and whether it has increased and whether it is universal (i.e. the same in every culture around the world). They sometimes use the word “incidence” as if it were interchangeable with “prevalence” but, in my understanding, “incidence of autism” is an oxymoron, since one cannot “acquire” autism. But the exchange touches on a lot of interesting and unanswered questions, and serves as a reminder of just how far we have to go on that path to understanding the mystery that is autism.

5 comments

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  1. Lucy B

    I’m increasingly prescribing Emily’s essays to myself for Health Com reading, and have sent this one to a professor. Churnalism is everywhere (cf. suggestible coverage of a recent Canadian study: the press release falsely claimed the study showed that eating 3+ egg yolks a week had the same effects on the heart as a serious smoking habit).

    Incidence is the number of new cases over a particular period (usually 1 year) — which I take to mean newly diagnosed cases rather than acquired, but I’m not certain. I’m hoping Emily will tell us. :-)

  2. Michael Forbes Wilcox

    Thanks, Lucy

    Whilst Wikipedia is not the ultimate authority on all things, since their description fits my understanding, they must be right! ;)

    http://en.wikipedia.org/wiki/Incidence_(epidemiology)

    “The incidence rate is the number of new cases per population in a given time period.”

    I think it impossible for there to be “new cases” of autism. For one thing (despite the vaccine crowd and those who believe in abduction by aliens), autism is not a disease. It cannot be acquired. While the “cause” of autism may be more complex than the “cause” of being blue-eyed, it is likely similar, in the sense that it is prenatal.

    I don’t mean to oversimplify, nor to deny that there can be environmental factors that influence development. How and when autism expresses itself may be variable and influenced by a host of things, but I believe that one is either born autistic or not, and that will not change during the course of one’s life.

    The fact that we are having this discussion at all goes to support what I said about how far we are along the path to understanding.

    “Ce que nous connaissons est peu de chose, ce que nous ignorons est immense.”
    http://www.todayinsci.com/L/Laplace_Pierre/LaplacePierre-Quotations.htm
    (That which we know is tiny; that of which we are ignorant is vast.)

  3. Emily Willingham

    Thanks for the writeup.

    I think incidence is OK for autism as it references new cases of diagnosis, not whether or not they existed all the time. We can talk about incidence in very broad ways, even in terms of newly arrived members of a population and their characteristics. Prevalence is a snapshot in time of who in a particular population has it.

  4. Michael Forbes Wilcox

    I appreciate the feedback, Emily. I guess I am overly sensitive because I so dislike the “disease” model of autism. Also, it’s possible I’m a bit literal-minded! ;)

    I encounter people all the time who talk about autism as something that one can acquire. Just a few days ago, a father of an autistic boy told me he and his wife disagreed about whether to vaccinate their two younger girls. They did, and he was relieved that they didn’t “get” autism. And, even more recently, I was told of an 11-year-old boy whose onset of autism at 18 months was “caused” by a stomach virus.

    I know from experience that autism-related behaviors (in my case, for example, meltdowns and temporary mutism) can be triggered by environmental factors (psychological or physical). Still, that’s a very different thing from saying that my autism was “caused” by these things.

    So, I prefer “prevalence” since it seems to be a less value-laden term. I will try to be more tolerant of those who use “incidence” in the casual way you suggest, but I guess it will always trigger a warning to me that the person using the term might be thinking of autism as something you can acquire, rather than a developmental pathway that is taken at some (as yet unknown) early stage of brain development.

  5. Lucy B

    I still don’t think incidence necessarily implies acquisition. It could reflect simply the number of autistic people born that year — not that this can be known so soon in life, it’s a hypothetical number. More realistically it means rate of dx.

    If there were a new environmental factor the incidence would increase, and also the prevalence assuming lifespan remained consistent. I get your concern about the disease terminology though.

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