In Grimm’s fairy tale Rumpelstiltskin, an impish little man helps a girl spin straw into gold. This story seems an apt metaphor for how legitimate neuroscience research can become transformed into sensationalist claims regarding the causes and treatment of ADHD.
As Robert Whitaker pointed out in a Mad in America article, biological psychiatry has recently changed its story about ADHD. The myth of the “brain chemistry” cause of ADHD has become transformed into a new narrative that invokes the parlance of “neuroscience,” the alluring scientific model du jour. As Whitaker observes, biological psychiatrists are now trying to frame ADHD as a deficiency in brain development. The stimulant drugs typically prescribed for ADHD are now purported to somehow target this “abnormality” and help children’s brains develop normally. Adopting the language of neuroscience has given the biological model of ADHD, with its claims about the efficacy of pharmaceutical cures, new credibility in the eyes of doctors, parents and the general public.
We must question, however, whether biological psychiatry’s new garb is based in the gold standard of authentic scientific research, or whether it is just one more version of the emperor’s new clothes. Pertinent to this is a survey paper that I read recently, “Misrepresentation of Neuroscience Data Might Give Rise to Misleading Conclusions in the Media: The Case of Attention Deficit Hyperactivity Disorder.” The paper is authored by neuroscientists Francois Gonon et al, of the University of Bordeaux and the French National Center for Scientific Research. The paper illuminates how legitimate neuroscience research becomes distorted through a cascade of successive misinterpretations. With each communication—from the actual data, to articles in scientific journals, to blog sites, to headlines in the popular press, and finally to clinicians and parents—information can become transformed, misrepresented, and amplified in a kind of telephone game.
The paper details a number of ways in which scientific data are misrepresented, and to do justice to the author’s extensive survey would take more than the space of this article. Inevitably, I must oversimplify by limiting myself to only one example of data distortion. The paper demonstrates how inconsistencies within a study lead to inflated claims in the conclusion that are not supported by the original data.
In one study of stimulant treatment for ADHD, for example, school aged children who had been diagnosed with ADHD were divided into two groups. One group was given stimulant medication, and the other was not. “The average reading score at the time of the last assessment was similar between the groups of cases that were treated versus not treated with stimulants…The proportion of school dropout was similar between treated and not treated cases.” The claim in the article was “this study supports the hypothesis that treatment with stimulant medication is associated with more favorable long term school outcomes for children with ADHD.” The reported results of this study clearly do not support the claims since both the treated and untreated groups of children did equally well.
In the Washington Post, September 21, 2007, the conclusion in this study was transformed to “ADHD drugs help boost children’s grades.” A reporter who skimmed the research paper to write a newspaper article obviously came away with a false impression of the efficacy of stimulants for ADHD. This misrepresentation gets passed on in turn to the reader of the newspaper. Finally, at the end of this chain of communication, clinicians and parents are left with the conviction that stimulant drugs will help improve ADHD children’s grades and keep them in school. The survey paper observes that the comparatively few studies with internal inconsistencies (only 2 articles out of the 360 articles examined) are unfortunately the ones predominantly cited in the media.
It especially struck me that neuroscientists themselves are examining the process by which research data in their own field are reported and sometimes distorted in the process of communication. This kind of analysis is quite different from a motley bunch of anti-psychiatrists shouting “foul play.” It is a case of scientists reflecting on their own field in order to maintain its integrity. This is especially important with high profile and high-profit issues like ADHD. “Quis custodiet ipsos custodes? Who will guard the guardians? The only ones who can are the scientists themselves.
Well, what can say to this confusion about our body/brain/mind experience. Apparently its ok to blame the chemicals introduced into the food chain over the last 50 years, for all sorts of behaviors, but the the chemical imbalance metaphor, is utterly and completely wrong? No paradox here of course?
Having lived with someone else’s child, who exhibited ADHD behaviors, controlled reasonably by his mother’s constant vigilance towards his diet. And having argued against his use of ritalin with the prescribing Doctor, I witnessed his explosion of motor activity, whenever we needed to let him be normal and eat McDonald’s food, at a friend’s birthday party. After which his mother told me, quiet rightly, to shut my mouth.
So having spent six years studying my internal neurochemistry, to help me master psychosis, I suggest the real issue is in learning how, to see that most people are right in some way, rather than reacting with our taken for granted social politics of blaming & shaming.
Consider a statement from a rather famous rebel;
“The versatility of my intellectual interests made me realize that “everyone is right in some way” –it is merely a matter of knowing “how.” _Wilhelm Reich.
http://en.wikipedia.org/wiki/Wilhelm_Reich
And of course he was labeled crazy by the establishment too.
Please consider an excerpt from my own writing;
I must admit that a “chemical imbalance” notion of mental illness, had initially given me a plausible “how” and “why” explanation for my experience of mania. Yet by 2007 I’d experienced decades of medication failures to control my recurring psychoses. On or off medications, I still experienced episodes of manic euphoria and crushing depression, with the confusing affect, that my only auditory and visual hallucinations, occurred while taking high dose anti-psychotic medication. I’d also been exposed to a range of alternative views of psychosis, which seek to understand its emotional and mental dynamics, rather than fearfully judge the experience as pathological. View’s which advocate taking the time to understand the nature of psychosis, and resist an unconscious urge to keep madness firmly out of sight, and safely out of the consensus mind. Like many in the psychiatric survivor community, I’ve experienced the very palpable fear and loathing, that states of madness invoke in other people. Like many I have been overwhelmed by the core emotional energies, at the heart of my humanity, and I’ve witnessed the denied fear of “emotional contagion,” both within myself, and others. In my humble opinion, a strictly medical model provides a container to sooth our consensus fear of madness, rather than seeking a causal explanation. Although, only a reading of the history of madness brings such a view to mind, beyond a matter of fact acceptance of the current, medical paradigm.
Please consider your post, in light of our subconscious compass of shame and our business as usual social politics;
http://www.youtube.com/watch?v=CZr5hSW65Vo
Sorry, if feels like a personal attack, its not meant to be, and I’m not trying to devalue your perspective, simply broaden it.
With respect and deep admiration for your courage to speak up, and take back your life,
David Bates.
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Danke, Marilyn. I just skimmed through the study but added it to my reading list. Some of the more interesting bits were where they described about their own worry that, basically:
1. The media says something concerning neuroscience.
2. The public finds out it was a fraud, crap, useless, false or whatever.
3. The public will start to devalue or disregard neuroscience.
For instance, a quote:
“As neuroscience findings are increasingly echoed by the media, we are now, and much more so than in the past, in the public eye. Distortions of neuroscience findings open the door to suspicious public attitudes towards neuroscience and this might result in a decrease of the resources that society will accept being allocated to future research. It is the responsibility of the neuroscience community, and in its long-term interest, to correct this as soon as possible.”
(Um, they mostly were worried about media, they forgot doctors, psychiatrists, etc. I don’t know if that was a conscious decision or not.)
Bottom line. They are worried about the public perception of their profession. They are worried about common people learning the simple chemical imbalance theory was not right and they were lied to. Etc. Etc. And the consequences. They are almost scared of people like us. And a nice thing about that study is that maybe some of them are thinking about about what their own profession is doing wrong, instead of just blaming media, etc, for telling lies about what they *really* do.
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In any case, I’ll add that I like much of neuroscience, in fact I’ve been studying it for maybe 15 years on and off. There’s lots of crap or useless stuff out there, but thinking about the function of brain and how it relates to human consciousness is one of my favourite topics. When in the last paragraph I talked about “them”, I wasn’t specifically targeting neuroscientists. I meant it more generally: for instance, some people inside psychiatry also may be worried about Whitaker’s, etc, books and articles, etc, and of the people with less name finding out, alone or in group, the lies they spread. It’s not just the grands, it’s also the general attitude towards them as persons, how much they and their professions are respected, taken seriously, obeyed, etc. Lest their profession is not called pseudoscience, bad science or fraud. Just like in ancient Rome where the street theatres mocked the people in power (did they really?), now we’re doing the same thing in the internet age.
There’s something slightly ironic or whatever in that we’re also here scrutinising their paper with a suspicious eye, I hope it doesn’t lead to more censorship. 🙂 But in any case, this seems like a good article, worth reading.
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