The continuously shifting justifications for pathologising non-conformists

Recently I have come across a treasure trove of interesting references on the continuously shifting justifications for pathologising autistic people and all those who are not culturally well-adjusted to “civilisation”. I’m bound to weave in a few references into the book on collaboration at human scale before publication. Following the trail of where Hans Asperger picked up the term “autism” I ended up reading a fascinating 1919 German book by Eugen Bleuler titled ‘Autistic and undisciplined thinking in medicine, and how to overcome it’. The content is not at all what you would think. The sands of pathologisation have shifted significantly. Unsurprisingly there are not many references to Eugen Bleuler’s work in the English medical literature. His original work is not even available in English. But I found a few articles and abstracts. The essence is distilled below. 

Here is an extract from a 2013 article by Bonnie Evans titled How autism became autism, on the continuously shifting justifications for pathologising autistic people and all those who are not culturally well-adjusted to “civilisation”:

The concept of autism was coined in 1911 by the German psychiatrist Eugen Bleuler to describe a symptom of the most severe cases of schizophrenia, a concept he had also created. According to Bleuler, autistic thinking was characterized by infantile wishes to avoid unsatisfying realities and replace them with fantasies and hallucinations. ‘Autism’ defined the subject’s symbolic ‘inner life’ and was not readily accessible to observers (Bleuler, 1950[1911]: 63). Psychologists, psychoanalysts and psychiatrists in Britain used the word autism with this meaning throughout the 1920s and up until to the 1950s (e.g. Piaget, 1923). However, in the 1960s, many British child psychologists challenged the contentions about infantile thought assumed by Bleuler and created new methods to validate child psychology as a science, in particular epidemiological studies. ‘Autism’ was then completely reformulated as a new descriptive category to serve the needs of this new model of child development. From the mid-1960s onwards, child psychologists used the word ‘autism’ to describe the exact opposite of what it had meant up until that time. Whereas ‘autism’ in the 1950s referred to excessive hallucinations and fantasy in infants, ‘autism’ in the 1970s referred to a complete lack of an unconscious symbolic life. For example, Michael Rutter, a leading child-psychiatric researcher from the UK’s Maudsley Hospital who conducted the first-ever genetic study of autism, claimed in 1972 that ‘the autistic child has a deficiency of fantasy rather than an excess’ (Rutter, 1972: 327). The meaning of the word autism was then radically reformulated from a description of someone who fantasized excessively to one who did not fantasize at all.

This article traces this radical transformation of the concept of autism in Britain, exploring the reasons behind the shift and the impact that it has had on psychological sciences relating to infants and children. It argues that the change in the meaning of autism was part of a more general shift in Anglo-American psychiatric reasoning which sought to understand psychological problems through epidemiological studies rather than individual cases. The introduction of psychiatric classificatory models has previously been explored in relation to the Diagnostic and Statistical Manual (DSM), in particular the introduction of DSM-III in 1980 (Grob, 1991; Mayes and Horowitz, 2005; Wilson, 1993). However, few people have explored this in relation to child psychology and psychiatry. This article examines the way that epidemiological methods shifted and morphed central concepts in these fields, in particular the concept of autism. It argues that the diagnostic practices required of psychiatric epidemiology in the 1960s continue to influence contemporary theories and descriptions of autism in Britain.

This is about as much as is available about Eugen Bleuler’s work in English. To really appreciate his perspective and his use of the term “autistic”, it is necessary to be aware of his in-depth critical analysis of the foundations of the medical profession. From an English abstract of Bleuler’s book on ‘Autistic and undisciplined thinking in medicine, and how to overcome it’:

The famous Swiss psychiatrist, Eugen Bleuler (figure 1), is well known for his seminal work on psychosis, for having coined the term ‘schizophrenia’ and for his disputes about psychoanalysis with Sigmund Freud. Less known is the fact that Bleuler was a harsh critic of many of the methods and practices of his colleagues. In a small book, first issued in 1919, when he was 61 years old, he castigated many of his contemporaries for sloppy thinking and poor methods, both in medical practice and research.

The title of the book sounds too good in German not to quote it fully: Das Autistisch-Undisziplinierte Denken in der Medizin und seine Überwindung. This provocative title can be translated as Autistic and undisciplined thinking in medicine, and how to overcome it. In the first chapter, Bleuler asserts that many of the cognitive habits of doctors can be compared with what he observed in his patients: a magical way of thinking, more aimed at the fulfilment of wishes and hopes than reflecting and analysing reality: hence ‘autistic thinking’. According to Bleuler, this pathological cognitive style is paramount in medicine, far more than in other sciences. He explains this by the complexity and obscurity of most medical knowledge, in combination with the need to defy sickness and death. The combination of our limited knowledge and the need to act causes what he calls ‘Primitivreaktionen’. These are a form of cognitive reflexes, based on tradition and habits, which create the illusion in both doctors and their patients that something useful is done.

Bleuler was of the opinion that autistic thinking pervades all areas of medicine, but especially prevention and treatment. He gives numerous examples of popular treatments in his time that were ineffective or even dangerous, such as electrotherapy, hydrotherapy and many dietary remedies. One only has to visit one of the historic European spas to get an impression of the popularity of water treatments around the fin de siècle and later. Bleuler observed that the efficacy of these treatments is unproven and probably non-existent. It would often be better to do nothing at all, instead of prescribing worthless remedies. Moreover, many ailments recover spontaneously. Even a seemingly harmless treatment, which many might now accept for its placebo effect, can have adverse effects, according to Bleuler: it may reinforce the conviction of the patient that he is really ill and even impede recovery. To give his policy of doing nothing the same dignity as the popular remedies with their ostentatious names, he—jokingly—proposes the term ‘udenotherapy’, which literally means ‘non-treatment’ (from the Greek ‘ouden’, nothing).

In the realm of pharmacological treatments the situation was not much better. Bleuler had little confidence in the methods used to develop drugs, which he summarised as follows: when a new substance is believed to have therapeutic properties, it is tested on a couple of animals or humans, and “in the great majority of these experiments nobody is killed”. Usually the drug is targeted at a condition with a benign natural course, or one that is easily influenced by suggestion. The doctor who discovered the drug believes in its beneficial effects, which strongly biases his observations. The outcomes of therapeutic experiments are usually caused by a play of chance, and only the favourable results are published, not the negative ones. Controlled experiments are rarely done and, if they are, the results are unreliable because the control patients differ from the treated ones. The next step is to print a glamorous brochure and offer free samples of the drug, so doctors can see for themselves how well it works in practice.

After his analysis of the dismal state of affairs in medical research and practice, Bleuler proposes a number of measures to improve the quality of medical research, which he called Forderungen für die Zukunft (requirements for the future). Some of these ideas had already been developed long before, by the French pioneers Louis and Gavarret, but he was not aware of their publications. For Gavarret, this was not unusual since even the renowned British statistician Greenwood (1880–1949) did not know the work of Gavarret. Bleulers’ proposals show some of his surprisingly modern insights. First he demanded that, in order to examine the efficacy of any treatment, it is essential to compare the results in two groups of patients who are as similar as possible in all aspects except the treatment. To achieve this he proposed alternating assignment of patients to treatment A or treatment B (or nothing). He did not come across the idea of randomisation, which had to wait for Ronald A Fisher, who described it in 1935 in his legendary book The design of experiments. Bleuler stresses the need to examine sufficiently large groups to avoid chance results. Also, he recommended that “for almost all conclusions the degree of their probability should be determined, if possible expressed in numbers”. He regarded so called negative results as at least as important as positive findings: “for science, there are no negative results”. They should be published in a registry, so that everyone can have access to all data. This should also help to counteract the tendency to try and find positive results at all cost, which he regarded as “a practice that results in much pointless labour and many false results”. This issue has later been elaborated by John Ioannidis in his influential paper ‘Why most published research findings are false’ (2005).

Bleuler aimed his criticism not only at the poor state of medical research and practice, he also had recommendations for journal editors and medical teachers. Medical publications should be concise, with a summary and a numbered list of references. Now commonplace, but in 1919 revolutionary, and much needed. As to medical education, he advised that medical students should receive at least some instruction in medical psychology and ethics. He strongly condemned the practice of medical professors lecturing their students ad nauseam without getting any kind of feedback (“a completely perfidious, autistic institution”). This was truly revolutionary in the authoritarian teaching culture at that time.

This brief summary of Bleulers’ insights shows that he was far ahead of many of his contemporaries. His proposals to improve medical research and practice laid out a programme that was only realised slowly during the decades after the Second World War. Many pioneers after him, such as Alvan Feinstein, David Sackett and Archie Cochrane, came to similar conclusions, and formulated the programme which we now call ‘evidence based medicine’, a term coined by Gordon Gyatt somewhere in 1990. Re-reading of Bleulers’ remarkable book shows his farsighted analysis of the many shortcomings of medical science and practice in 1919, and the effective remedies he proposed. His name should be enlisted in the hall of fame as one of the true pioneers of evidence based medicine.

The scientific basis of the medical profession is mostly limited to correlations. Often causal understanding is lacking due to the quasi-infinite constellations and psychosocial factors that can cause human dis-ease. Even Bleuler, with his astute observations on the medical profession and his scathing critique of big pharma more than 100 years ago, was a product of his time. Like most of his contemporaries he was an advocate of eugenics (sterilisation) when it came to “mentally diseased” people.

The introduction of “evidence based” approaches was very much a double-edged sword. Most people confuse being able to mechanically use an evidence based model with understanding the model, all the underlying assumptions, and the limitations, resulting in the pseudo-science of behaviourism and in sensationalist “autism research” that only serves the commercial interests of the autism industrial complex.

Like copy and paste coders in software, social scientists and medical researchers work with implicit assumptions all the time, without necessarily worrying much about it. The muddling, i.e. the use of models without explanatory powers, has only gotten worse in the age of artificially intelligent systems, where every man, women and dog is tinkering with digital correlation maps, believing that this will result in exponential post-human “progress”.

Anyone who suspects being autistic is well advised to learn about autistic culture and autistic ways of being from autistic people. We really don’t need any gatekeepers, and even less people who attempt to “help” us by “normalising” us.

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2 Responses

  1. I was born in 1987. The notion that “evidence based medicine” has not been around until 1990 is somewhat scarry to me.
    I mean, I do recognize that, due to the diversity in biological systems in general, and human bodies specifically, medcine cannot be an exact science (like pool billard), but has to be a statistical science (aiming for the best-possible, most-likely outcome for any given patient of some description).
    But: The mathematics surrounding statistics has been around for a couple hundred years before doctors started to pick up? wtf?
    Bleuler clearly qualifies as a hero.

  2. Suits me right when I commented before reading to the end.
    Obvious exceptions are obviously obvious, but for the same reason I am very gratefull that I was not born before 1935.

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