Monday, November 11, 2013

Measuring ghosts

     A recent article in Science Translational Medicine asks the question "Can We Measure Autism ?" To my mind this begs the question, "is there really something called "autism" that we should be trying to measure ?". The authors Isaac S. Kohane and Alai Eran inadvertently make the case in the negative. They first of all note the controversy that recent changes in the "psychiatric Bible", the DSM, have provoked. To their credit they mention the "changes in funding" behind some of the debate, though they stop short of a robust criticism of the "mental illness complex" as a money making industry. They also mention how the DSM classifications "strike at the heart of our own identities as autonomous human beings" without going on to criticize the whole enterprise as a method whereby some people exercise power over others. Finally they admit the obvious, that mental health "diseases" simply don't have the "robust and definitive" criteria that is demanded in other fields of medicine.

     The authors, however, are reformers rather than abolitionists. They lay out a series of criteria for diagnosing autism spectrum disorder (the present fashionable name). These would include 1)agreement of the key features of a disorder/disease, 2)agreement on how such features are to measured clinically and 3)a pathway from such measurements to a clinical label that provides useful information on both prognosis and treatment, including estimates of the effectiveness of such treatment. They admit that, "Until recently, ASD diagnoses did not meet most of these criteria.".

     Are the more "recent" criteria any better ? The authors go on to honestly admit that even "expert" (let alone the way that autism is usually diagnosed) ways of diagnosing (labelling ?) autism are wildly variable, and they admit the possibility and even likelihood "do not impart sufficient diagnostic or prognostic accuracy to be clinically useful". Mind you these are the efforts of the recent experts. They also admit the "remarkable individual differences" in response to such interventions. Without, of course, ever invoking the need for evidence based medicine. What is the natural course of the so-called disease if people don't work on it and its carrier ? What is the natural rate of recovery ?

     The authors mention the large body of research in real scientific fields about the supposed causes of "autism", and they edge close to saying that supposed "co-morbidities" may in  fact reflect that autism is, in fact, many different things masquerading under a label that is-my opinion- financially convenient for a large number of "people manipulators". They also state that verifying such research will require a much larger data analysis than has been done to date. The authors have great hopes that the diagnosis of "autism" will be improved through a thorough analysis and combination of the objective signs being investigated (as opposed to the subjective way that the label is presently applied). Their hopes are that coming to a diagnostic decision about autism will more closely resemble real medicine like the diagnosis of heart disease where many lines of evidence are considered. They do, however, admit reality, that "the multimodal approach remains untested".

     Kohane and Eran end their editorial with their vision of a wide data connection net that might actually make autism diagnosis an objective and useful enterprise. They, as reformers, make their bows to the various institutions which presently profit from autism - "research, clinical care, school, home". After mentioning holy four they give an afterthought to "individuals, with their consent". The mind boggles at the thought of a child or adolescent facing such a gathering of power having enough will and guile to escape their kindly embrace without bringing down the inevitable punishment hidden behind the mask of caring. It is significant that they end their essay by calling for data sharing amongst the holy four. The "patient" is left out of the loop here.

     I have to admit that the reforms being proposed can seem quite attractive. They are, however, fitted into a mindset that accepts both the power of this branch of the psychiatric industry and some underlying reality to the label presently being used. While not being an expert I can read the studies being done and recognize some glaring problems with them. An historical scepticism seems in order. I have an old medical book from the 1930s in my library that parses out over 20 different forms of the mental disease called "masturbation". The idea that there was no such disease would have seemed perverse (pun !) to the author. Nowadays the author himself would be the perverse one.

     Psychology and psychiatry are not sciences in any non-ideological sense of the term beyond some rather basic findings. These are where real science is done in these disciples. The rest is very much smoke and mirrors, the smoke coming from the burning of huge piles of public money and small piles of private money spent by those who want to fill their time with useless and usually painful pursuits. The way I see it "autism" is very much like the label "schizophrenic". Both labels conceal a reality of many, many, many different real diseases under a useless generalization. I don't doubt that both schizophrenics and autistics contain large populations that do have legitimate diseases, but the popularity of a catch-all label impedes both diagnostic and therapeutic efforts to deal with these matters. For instance many labelled "autistic" may indeed have gastrointestinal upsets. BUT giving them a secondary diagnosis of autism means that the real problem remains unaddressed. The signs become the focus rather than the cause.

     Ignoring real diseases and "treating" things that are nothing but misplaced words is like putting problems down to demonic possession and imagining that rituals of exorcism are some sort of "treatment". There is finally the question of whether there is anything wrong at all in at least some cases. I'm not of the opinion that labels like autistic or schizophrenic don't disguise at least some real medical problems- many not one. There is, however, the example of masturbation that I mentioned above. In that case the whole intricate system of medical (and popular) superstition was utterly false. How much of what is now described by psychiatric labels is also totally imaginary ? How much is also much better dealt with by literature or philosophy rather than "medicine" ?

     That is the sort of question I would like to leave with the reader. That is why I think that attempts to reform a modern witchhunt by increased rigour are very much asking us to "measure ghosts".

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