In 1996 the book shop chain Waterstones launched a poll of the reading public asking for views on the greatest books of the 20th century. They published a list of the top 100 as a pamphlet The Books of the Century, invited Germaine Greer to review them for the house magazine and offered customers the chance to buy titles from the list at four for the price of three. The Waterstones survey was based on an idea from the New York Public Library’s Books of the Century, a list produced in 1995, and perhaps not surprisingly the two lists shared 50 titles.
Since 1996 a steady trickle of similar Lit Lists has come to my attention. In 1999 the French retailer FNAC collaborated with Le Monde in a survey that asked the question “Quels livres sont restés dans votre memoires?” and published a list of the top 100 (this book listing exercise seems pretty much always to produce a list of 100). Of the 16 lists I have before me the BBC tops the charts with four, starting with The Big Read Top 100 and now 100 Books Everyone Should Read, the 50 Greatest Books Of All Time and the top 100 Books You Need To Read Before You Die. Newspapers and periodicals like the genre: Time Magazine’s All Time 100 Novels is joined by offerings from the Guardian, the Daily Telegraph, the Times Education Supplement and Reader’s Digest.
Who gets to choose? Crowd-sourcing has been popular: typical is the Daily Telegraph’s poll of its readers to suggest a top 100 books for World Book Day 2007 and the Modern Library request of its readers to nominate both 100 best books and 100 best novels. Experts aren’t as disdained as you might imagine: Norwegian Book Clubs asked 100 noted writers from 54 countries; in 2002 the Times Education Supplement asked teachers and on the same theme the Guardian in 2014 asked contemporary writers to suggest set texts for English school children. The Modern Library asked its editors as well as its readers and Time magazine asked two of its resident critics for a list, idiosyncratically suggesting titles only from 1923 to the present. The Guardian has published the list of just one person (Robert McCrum) and in 2013 David Bowie published his own list of 100 must-read books later made the basis for an online book club launched by his son Duncan Jones.
The criterion for inclusion in these lists is not fixed – good reads, great books, all-time great books, 20th century books only. Most consist only of works of fiction although Waterstones original list included two nonfiction books – Nelson Mandela’s A Long Walk To Freedom and Delia Smith’s Complete Cookery Course. The Bible appeared along with 99 novels in the in the Telegraph’s top 100 books.
The cinema has a role to play and accounts for some of the more implausible entries. Jurassic Park? Trainspotting? Really? The film link probably also explains why Gone With The Wind features on more than one list including Le Monde’s. On the other hand some famous films were made of books that were already widely read and would have been here anyway – Lord of the Rings, the Harry Potter books, Catch-22, Rebecca. Film doesn’t account for all the outliers: I wonder how many people really voted for Jacques Lacan’s Écrits?
Two entries made me laugh out loud. The teachers list for TES was utterly persuasive and included Pride and Prejudice, Anna Karenina, and the Very Hungry Caterpillar. And in the writers’ suggestions for school set texts I enjoyed Hanif Kureishi’s proposal of his own book the Black Album. I awarded it a Schwartzkopf prize (for which it is the only contender from all the lists) named for the famous soprano who in her appearance on Desert Island Discs nominated seven of her own recordings.
Does a consensus emerge? Nine of the top ten books in the list of Most Begun but Unfinished Books Ever from the Goodreads website also feature in at least one of the 16 best books ever lists. Even so certain books and authors feature across several lists: Jane Austen , George Eliot, the Brontës – you can guess the other recurrent appearances in a predominantly Anglo-centric portfolio.
It is tempting to try and merge all the listings to produce an outright winner but heterogeneity among the lists makes it difficult to manage a pooling exercise. If you are keen to pick a short list you could choose books on the lists that have been written by Nobel Prize winners or that have won the Man-Booker prize; you could go with the wisdom of crowds and select books from the lists that also feature in the best sellers of all time lists, in which case you’re likely to be reading Tolkien, Rowling, Blyton and Dan Brown; you could remove the arrivistes, the fashionably popular, and stick with those that have proved enduring – leaning on the wisdom of crowds without much money or perhaps crowds that use lending libraries.
I’ll save you the trouble. There is only one book that appears on all 16 lists that I have collected. It is a novel, a good read, published in the 20th century, approved by teachers, literary critics, rock stars and the reading and book-buying public. It has been made into a film more than once. It touches on some of the great themes of the long 20th century – identity; the relation between money, social class and respectability; the treatment of women. It is The Great Gatsby. Who knows if it is the book of books but it is the undisputed book of book lists.
I was prompted to write this post after reading a review of a book about autism in the Times Literary Supplement – James Cook writing about Clara Törnvall’s The Autists (TLS 23 June). So, it isn’t a review of the book, or even a review of the review. It’s a note about a common problem I see with the popular discussion of autism.
Törnvall is described as a successful journalist and TV and radio producer who has been diagnosed in adult life as having autism. Her description of what that means will be reasonably familiar to anybody who has encountered recent coverage of so-called high functioning autism among people in the public eye – she doesn’t pick up on subtext/banter, she struggles with eye contact, she doesn’t like being interrupted, she has a few (but intense) interests, she has a long-standing proneness to anxiety. Her book is presented as myth-busting but it has to be said some of the myths are rather underwhelming – woman can be autistic; autism isn’t a disease but a (neurodevelopmental) condition; autism’s causes are biological with an hereditary component. Still, apart from the occasional lapse into hyperbole most of it seems uncontentious enough.
What I found problematic, here and more widely, is the merging of two different ways of talking about autism – justified no doubt by the spectrum metaphor. Two because current discussion of autism treats it in two ways – as a disorder, often disabling, or as a manifestation of natural variation in human behaviour. To my mind these require different vocabularies. In the former case it is appropriate to talk about diagnosis and to regret the lack of a cure (as Cook does); in the latter we should use the vocabulary of recognition of (neuro)diversity and regret the inflexibility of modern social life. This distinction calls for clarity about what defines the boundaries of autism as a disorder (qualitatively different manifestations and associated severity of disability), but that is missing from Cook’s review and from much public discussion of the topic. Instead the language of diagnosis is used across the spectrum, and we are invited to be optimistic that more and more people (and especially women and girls) are receiving the diagnosis.
I think this merits pause for thought. Overenthusiastic application of diagnostic labels to historic figures may be merely silly (Beatrix Potter? Really?), but we should be careful not to categorise all sorts of people (especially the young) as so-called Autists on the basis of eccentricity, social awkwardness or a tendency to quirky infatuation with objects. Labels can be damaging; maybe not everybody will benefit when they’re growing up from being told (or others being told) that they’re an Autist. And you don’t need a diagnosis to try noise-cancelling headphones.
At the same time, there is something potentially damaging to the interests of the severely disabled if we appropriate the language of disorder to describe normal variation. The person with a severe disabling autistic disorder – who may be prone for example to impetuous running, persistent hand-flapping or screaming meltdowns – is not recognizable in accounts of people who are, if you like, on the other end of the spectrum. So, there is little evidence that contemporary popular discussion of autism, concentrated as it so often is on those often described as high-functioning, does much for those who have highly disruptive (sometimes called challenging) accompanying behaviours and are unable to care for themselves or live independently. Awareness isn’t raised nor campaigns triggered for those most in need, and as a result it remains the inadequacy of our provision for people with a severe disabling autistic disorder that constitutes our society’s main failing of those with autism.
Postscript: an abbreviated version of this comment has been published as a letter in TLS 21 July 2023.
An unremarkable film that nonetheless raises some far-reaching questions.
I recently watched the documentary Adult Human Female. It gives an outline of the main arguments raised in what we might call the gender critical response to gender identity theory as it is applied by trans activists. I tuned in after seeing an article in the Guardian newspaper reporting on a row taking place at Edinburgh University about whether or not it should be shown on campus. It isn’t difficult to find – it’s readily available on YouTube for those wanting to try and understand what the dispute is about. For me, the film raised three questions, only one directly related to the Edinburgh story.
The first question is, I suppose, why does anybody think the film should be banned? It takes the form of inter-cut pieces to camera from various people with some claim to relevant expertise – in law, medicine, and philosophy for example. There’s nothing here that would be novel to anybody who has taken even a non-specialist interest in trans debates in the last few years. The style is, in places, challenging but there’s nothing remotely illegal in it, or anything that could be reasonably described as aimed at inciting violence or hatred towards trans people. The main objection I can find online is the usual one that any opposition to the gender identity theory proposed by trans activists must necessarily be offensive and transphobic.
Two other questions came to mind while I was thinking about this: neither at all original but prompted, I think, by watching the case being presented on film rather than by reading about it.
One of those questions is – I can see what’s gained by tackling single issues as case studies, but what’s lost? The specific example raised by the film is sexual violence in prisons. For sure, I think most people can see that putting violent sexual offenders with male genitalia into female prisons is not a great idea. But the focus on this issue can easily overshadow a wider problem of sexual violence in prisons. Not long after I watched the film I read a newspaper report indicating that in the past 13 years there have been nearly 1000 rapes and more than 2000 sexual assaults in our prisons. The main lesson is that overcrowding and understaffing mean that it’s all but impossible to make prisons safe for those in them. Rather lost, then, in the furore about the threat from trans women is that sexual violence in prisons is best viewed not through the lens of identity politics but as an indictment of national government policy, and especially that pursued by successive Tory governments in the name of austerity.
And the third question – gender reassignment, sex and sexual orientation are all protected characteristics under the Equality Act 2010, but what exactly is the point of protected characteristics? They are difficult to define (see eg Malleson K. Equality law and the protected characteristics. The Modern Law Review. 2018 Jul;81(4):598-621.) and despite now extending to nine they still don’t include obvious targets for discrimination like body weight, socio-economic status or non-disabling mental disorder. When Diane Abbott MP wrote an ill-considered incoherent letter to the Observer newspaper about racism and prejudice, she was accused of trying to argue for a hierarchy of discrimination where none exists. And yet that feels like the whole point of protected characteristics – they are labels for sorts of discrimination we want to legislate against and therefore implicitly they label by omission states that don’t merit legislation.
Maybe I misunderstand, but it strikes me that these aren’t easy decisions to make, and they are made harder by the style of public debate that involves striking positions and affecting certainty – with the direction of travel seeming to be away from nuance and acknowledgement of uncertainty. What a shame that Edinburgh University students can’t lead the way in modelling what a proper debate might look like.
Rory O’Connor is a health psychologist who has published extensively on suicide. He is also active in discussions about suicide aimed at the general public and about suicide prevention policy, especially in Scotland where he lives and works.
His bookWhen it is Darkest: why people die by suicide and what we can do about it is divided into four parts, covering the main facts (and misconceptions) about suicide, its main causes, what preventive interventions might be effective, and supporting people who are suicidal or who are living in the aftermath of the suicide of somebody close. Further resources are mentioned throughout and there is a list at the end. The emphasis, especially when considering causes, is on the psychology of suicide and includes a review of the author’s own framework for organising the disparate associations with suicide into what he calls the Integrated Motivational-Volitional Model.
O’Connor’s aim is to combine personal and professional perspectives. The style is informal, written in the first person. Interspersed throughout are anecdotes about his personal experiences, his contacts with people who have felt the impact of suicide in another or of feeling suicidal themselves, and his career in suicide research. At the same time it is in parts quite technical and ends with 48 pages of academic references, with a leaning towards his own research.
The book covers a lot of ground without being exhaustive or exhausting, especially of course in its review of prevailing psychological theories. And it offers a sustained attack against fatalism in the face of suicide and the apparent impossibility of eradicating it: we can move to understand more and to develop effective prevention strategies.
No book like this can be entirely comprehensive but there are some important gaps. There is too little on the personal and social impact of drug and alcohol misuse, either as a risk for the individual or as part of the reason people become isolated or alienated from social support. Mental disorder and its treatment may not be the most important part of suicide prevention but even so it deserves more consideration than it gets. Many of those who die have been in contact with helping agencies – GP, the mental health services, university counselling services or whatever – and there is not much here about how such services might do better or what families feel about this aspect of how tragedy might have been prevented. Suicide needs to be seen in social and cultural context if we are to focus public health interventions. Psychology can’t explain the wide regional variation in rates, and some of these wider issues feel undercooked. In a laudable attempt to combat negativism the effectiveness of suicide prevention interventions is overstated.
What about readership? It requires high levels of general and scientific literacy and that will limit its utility. The presentational style will not suit everybody. I personally didn’t like the idea of calling suicide The Big S. I also wasn’t keen on the idea that suicide is not usually about the desire to die but about the desire to end suffering. After all “suicide” means death as the result of an act intentionally designed to end life, so this is a paradox that on close inspection just doesn’t make sense. There are few accessible books on suicide for the general reader (Mark Williams’ Cry of Pain is one, and the Help is at Hand booklet for those bereaved by suicide is excellent); this text will therefore find a place as a useful review for the interested and well-educated non-specialist.
Germany’s asylums between the world wars housed a mixed population – mainly of people with a learning disability or a severe and persistent mental illness. These people became the focus of Nazi interest for two reasons.
First – and this isn’t as widely known as it should be – residents of the asylums were the first large scale victims of the Nazi’s mass murder programmes. The technologies used later, on Jews, Roma, homosexuals, communists and others, were first developed in what is usually known as Aktion T4 (named prosaically enough for the original HQ address Tiergarten 4). That is, T4 developed gas chambers as an efficient method of killing, purpose-built crematoria for disposal of the bodies, and an associated propaganda programme that is hard not to see as enabling a sort of collusion with the general public. An estimated 200,000 people from the asylums were eventually killed in T4 and its sequelae. This history is covered in some detail in Michael Burleigh’s extraordinary 1994 book Death and Deliverance: “euthanasia” in Germany 1900-1945 (Cambridge UP, listed unbelievably as out of print now).
An apparently separate campaign waged by the Nazis took the form of what we would now call culture wars, with modern art as a particular target. The infamous Entartete Kunst (Degenerate Art) exhibitions curated by party members and promoted by Goebbels are well known, but less so is the link to asylum art. A number of key modernists had been intrigued and influenced by the work of apparently mad people – so-called art brut – a significant collection of which had been accrued by Hans Prinzhorn at Heidelberg and valued as being artistically important in its own right, not simply as a window into the mind of the insane.
The Nazis exploited this association in carefully managed presentations associated with the message – look how modern art is no different to the art of lunatics and imbeciles and yet you are duped into paying huge sums for the public galleries to own it. With the related message of course – it’s all part of a (Jew-orchestrated) conspiracy to undermine true Germanic society through undermining its culture.
The two stories inevitably intersect, with many (amazingly not all) of the asylum art works destroyed and the artists who made them perishing in the mass euthanasia programmes. This story is well told in a new book The Gallery of Miracles and Madness by Charlie English – unlike Burleigh a journalist rather than historian, with a predictably different but nonetheless well researched and engaging style.
The asylum artists who died in the T4 programme were caught in a perfect storm – of culture wars used by an authoritarian government to garner support for their wider political project; the motivating force of economic hardship coupled with the idea that alien enemies are to blame; the promotion of “euthanasia” as a solution to the societal problem of burdensome lives. Sound familiar?
The familiar first: O’Sullivan describes typical cases that come up in her clinical practice – seizures that aren’t due to epilepsy; weakness or paralysis when there is no identifiable neurological disease; persistent symptom states like chronic pain or fatigue when there is no apparent explanatory pathology. She is not talking about neurological diseases waiting to be diagnosed but about presentations in which “no disease is found because there is no disease to find. In those people the medically unexplained symptoms are present, wholly or partially, for psychological or behavioural reasons”. Refreshingly uninterested in worrying about terminology, she calls these conditions psychosomatic.
The book’s case histories contain some familiar details – responses to the diagnosis range from bemusement to downright hostility and rejection. And contact with a close family member or friend can provide revealing detail about likely causes or perpetuating influences.
And the unfamiliar? Like most doctors, O’Sullivan sees the cause of psychosomatic conditions as being primarily psychological and in her own practice she regards psychiatry as a part of the management plan. However, she is (far) more than usually willing to state this unambiguously and is interested herself in understanding what are the underlying problems. Here she encounters such a variety of stories – complicated bereavements, family and other interpersonal predicaments, gender discomfort, loneliness and more – that although she sees their relevance she cannot really discern a common theme.
O’Sullivan has clearly read more widely than many a clinician, for example in the history of psychosomatics and psychodynamic theories, and she is comfortable with the idea that the mechanisms driving psychosomatic presentations are unconscious and often involve a sort of dissociation – that is a disorganisation of usually-integrated mental processes. She sees the symptoms as having a function, perhaps defending against emotional breakdown or in some other way helping the patient adapt to the otherwise intolerable.
The book throws down a gauntlet in the form of a question: “If psychosomatic symptoms are so ubiquitous, why are we so ill-equipped to deal with them?” It is picked up in O’Sullivan’s second book on the topic The Sleeping Beauties and other stories of mystery illness, which describes her exploration of a number of “mass” episodes of psychosomatic illness. This could be a horrid parade of grotesques but it isn’t, instead providing a sensitive exploration of external social influences on illness and its course. Everywhere there are “…moral dilemmas, inconceivable choices, inequality” and the unenviable role of women in society.
The answer to the gauntlet question comes at least in part from the medical and other social and official responses, which do not come out of it well. They are often disparaging or dismissive, and mistrust of officialdom plays an important part in the difficulty of forming a shared therapeutic response. An important observation is made about the part played by official responses that simultaneously confirm the absence of underlying disease while at the same time downplaying or ignoring the psychological and social. This loops back to the first book with a comment about the currently favoured label of Functional Neurological Disorder which is “…used to imply that the brain is not functioning – therefore (rather ham-fistedly, I would say) placing the source of psychosomatic disorders firmly in the biology of the brain” – where O’Sullivan believes it does not belong.
Again, psychosomatic illnesses are seen as serving a purpose: “…perhaps we need release valves and coping mechanisms, face-saving ways of addressing conflict and grappling with ambivalence. Sometimes, embodying and enacting conflict is either more manageable or more practical than articulating it”.
Where next? There is work left undone by these two books. One task is that more work is needed to link lessons about the causes of what we might call the epidemic cases in Sleeping Beauties to the sporadic cases in All in Your Head: in particular to ask – is there really no common theme to the apparently disparate adversities that lead to onset of psychosomatic illness? This links to the need to consider other explanations for the onset of symptoms in the face of such adversities. We accept that depression can follow loss, anxiety can follow threat and PTSD can follow trauma, and we usually see such conditions as symptomatic breakdowns rather than adaptive responses. Perhaps we could look at psychosomatic illnesses in the same light, as manifestations of how we break down when faced with adversities that represent (the common theme) persistent and seemingly unresolvable conflicts, challenges and dilemmas.
Emergency Departments and their associated mental health services don’t always get good press when it comes to feedback about how they respond to people who repeat self-harm and attend for help: this leaflet which has just become available online is a positive contribution and a good example of collaboration between statutory services and the people who use them. Just the fact that there is such a leaflet is itself a positive message – saying that the service takes the problem seriously. And the content is supportive and practical – it certainly bears the hallmark of having been written by people with personal experience. Maybe a small step but nonetheless a step in the direction of building bridges and improving mental healthcare. To be emulated!!
I detect a drift into the mainstream of the idea of personality disorder, and in an attempt to understand why I have been reading some pop books – perhaps the best known being Ronson’s The Psychopath Test.
The book is subtitled “A journey through the madness industry”: it’s never clear what Ronson means by the madness industry but it’s true that the main structuring device is a journey, although it’s from one person to another rather than (unfortunately) from one idea to another.
We start with Ronson meeting a neurologist in a café in London, and an anecdote about an anonymous incoherent book she has received. There are warning signs here about this careless superficial book – the person he’s meeting isn’t a neurologist and even a casual conversation with a few mental health clinicians would have marked his card about how common it is, if you work in that world, to receive unsolicited books and articles from people hoping to interest you in their idiosyncratic view of how things work, and how little such gifts really tell you about either mental illness or mental health services.
It’s difficult to identify a theme in what follows. To start with it seems to be an exploration of psychopathy, which Ronson has been persuaded is routinely diagnosed in clinical and forensic practice on the basis of Hare’s Psychopathy Checklist and as an explanation for which he mentions repeatedly a half-baked idea about amygdala function. So we get a visit to a special hospital, a skimmed review of some aspects of the Oak Ridge scandal, and an interview with a ruthless businessman, but half way through he seems to lose interest in that line of thinking and we get an account of David Shayler’s mental illness, an interview with a guest-booker for (among others) the Jeremy Kyle show, and a drift off into stuff about DSM and the overdiagnosis of bipolar disorder in children in the USA.
All this is sketchily researched. The piece about the Oak Ridge scandal doesn’t mention the Class Action lawsuit started in 2001 against The Ontario Government and Drs. Elliott Barker and Gary Maier for breaching the basic human and civil rights of participants. The account of Shayler’s mental illness has no obvious point in relation to understanding ideas about psychopathy and the egregious picture of Shaler dressed as a woman suggests the main aim is to invite sniggering. In his report of an interview with Hare himself, there’s a recycled anecdote that comes from the introduction to Hare’s 1993 book about psychopathy. The interview with Charlotte Scott (the Jeremy Kyle producer) is mainly a rewarmed version of her earlier mea culpa published in the Guardian.
The people Ronson interviews have a habit of speaking in odd tabloid journalese, issuing stupid one-liners like if you’re worried about being a psychopath then you’re not one. Adam Curtis asks him – what does all this say about our sanity? – one example of recurrent cod philosophy about the difference between sanity and insanity that reminded me of nothing more than Rosenhan’s fraudulent paper On Being Sane in Insane Places.
Reviewers, at least those quoted in the book, apparently find it all hilarious. Will Self says he found himself “laughing like the proverbial loon” for page after page. And this coupled with a comparison one of them makes between Ronson and Louis Theroux provides a clue about what is going on. Ronson tries disarming mentions of his own tendency to anxiety and of the intrusive and disabling nature of mental illness, but in truth this is Barnum and Bailey psychiatry, a parade of grotesques (people and ideas) at which we might laugh or shudder depending upon our disposition. Its appeal is to Hollywood stereotypes – Gordon Gekko meets Michael Corleone – and doesn’t offer anything interesting about the contentious diagnosis of personality disorder (antisocial or otherwise) or sympathetic to the popular understanding of mental illness or the people who try to treat it.
I guess it’s that appeal to the familiar that accounts for the popularity of this grim book – the offer of a reassuring romp through a landscape populated by really odd people who aren’t like us. I didn’t find it remotely funny, just rather unpleasant.
To an impartial reader there was always something odd about Rosenhan’s famous paper “On being sane in insane places”. It didn’t read like a report of high-quality research of the sort you might expect in Science, and the enthusiasm with which it was received (it has been cited >4000 times according to Google Scholar) seemed out of proportion to its form and content as a single author patchily written account of an un-replicated study involving 8 subjects.
Susan Cahalan’s book The Great Pretender goes further along the road of questioning the study, making the case that the whole thing was a fraud. She was unable to find any research records related to the reported results, and when she eventually traced two of the pseudo-patients they confirmed that they had not made the detailed observations reported in the paper and indeed hadn’t been asked to. One of the two was dropped from the final report, perhaps because his experiences were too positive, and yet in the rewritten final paper (now with 8 pseudo-patients) all the other numbers were identical to the earlier draft with 9 pseudo-patients. And most damningly, when the clinical records of Rosenhan’s own admission surfaced they showed that he had lied about what he told the admitting psychiatrist, in fact retailing fairly standard symptoms of schizophrenia.
No doubt the study proved so popular because it suited people to take it at face value. Psychiatry was in a dire state with diagnosis almost meaningless and the abusive nature of inpatient care widely recognized. Calhan quotes Chief Bromden: “It’s the truth even if it didn’t happen”. Rosenhan had provided a stick with which to beat the system. Calahan reports that even Robert Spitzer knew some of the facts – he had apparently seen the notes of Rosenhan’s admitting psychiatrist but kept quiet because he was keen to force through a more standardised approach to diagnosis. Calahan’s conclusion overall: “The messages were worthy; unfortunately the messenger was not”. Although at the same time as apparently approving of the function of the report in highlighting the need for change in psychiatry, she recognizes the problems with the way the paper was used. It formed part of the rationale for an aggressive deinstitutionalisation which has had catastrophic effects on care of the severely mentally ill in the USA, and it helped feed the growth of the DSM behemoth.
The ambivalence of Calahan’s conclusion is at odds with her book’s unequivocal title, and it started me thinking. If fraudulence and integrity exist in science, how shall we know them? My preliminary take on this is that researchers who misrepresent research fall into four categories, of course with blurry boundaries. It isn’t entirely clear that we know what to do about any of them.
The out-and-our fraudsters. Burt, Wakefield, and now Rosenhan are infamous. They just made stuff up. The list of members of this group is long and will grow. Of course we call out individual studies, but what of the individual academics? Is everything they ever researched to be negated? Lance Armstrong’s Tour de France wins are no longer acknowledged, but every other race he won?
The embellishers. Perhaps not everything they wrote is made up, but there is no great clarity about which bits were truth and which bits weren’t. To my mind the most under-acknowledged member of this class is Oliver Sacks. He was coy about it, but clear enough: “I mean, perhaps it’s a case that I seized on certain themes, imaginatively intensified, deepened, and generalized them. But still”. Or again: “I don’t tell lies, though I may invent the truth”.
And yet Sacks has never, to my knowledge, been called a fraud. Why not? Perhaps because some of the content of his cases would be familiar to many clinicians in the right specialties, and therefore everything he wrote clearly wasn’t made up. Even more so than for the out-and-outers, we can’t be entirely sure how much of the output of people in this group is trustworthy, and therefore what we should do about it.
The spin doctors. Here the behaviour is nothing like making up results; it’s not fraud. Most typically it involves secondary research, reviewing and synthesising the findings of others. This is a difficult skill to get right (see my fourth group) but the efforts of the members in this class are so wilfully wide of the mark, their failure to raise uncertainties or to consider biases so glaring, their findings so predictable from their pre-existing position on the question at hand, that you have to question motives rather than competence. These are academics who should know better. During the pandemic, Heneghan’s approach to COVID transmission is one contemporary example. In my own field I place Kindeman’s outrageous claim that there is no more evidence for the efficacy of ECT than there is for that of homeopathy. Here the answer seems to be attempted rebuttal rather than looking the other way, tempting though that is. Not that it’ll influence the people involved, but perhaps it’ll influence their standing in the academic and wider communities.
The academics who produce flawed evidence is a class that includes pretty much all the rest of us. We try but often get things wrong or present results in a biased way. A personal example. Some years ago, I led a programme part of which involved a case-control study exploring whether life stress might precede the onset of stroke. The answer looked like a tentative Yes and we published in a leading stroke journal. Much later I was approached to consider giving expert evidence in a case involving somebody who had suffered a stroke after a shocking event that was apparently a third party’s fault. My study was being cited. An expert for the defence had produced an eight page critique pointing out the flaws in my study and all I could say to the plaintiff’s team was “fair cop”. The main answer here is rigorous peer review and an academic climate that encourages serious adult debate about uncertainty.
This is a muddy field. Lack of rigour merges into recklessness with the facts and that merges into complete disregard for the facts. There are parallels in the wider public discussion about fake news and online media. A tighter regulatory environment may be one answer but is unlikely to be achievable at scale and with sufficient meticulousness. We need therefore to have a better, that is more critical, approach to engaging with academic and related sources. Perhaps critical appraisal skills teaching needs to include skills in appraising authors as well as their outputs…
First person accounts of what it is like to live with autism necessarily come from people who do not have substantial learning disabilities or communication problems. They provide us with insights into autistic experiences but they unavoidably leave a sense that the picture we are forming is incomplete. This memoir by Tito, a young Indian man, helps us inch nearer the inner world of the otherwise unheard majority – he is significantly disabled and essentially non-verbal, struggles with social interaction and cannot live independently. And yet he has staggering literacy skills. He tells us of his early life and development and especially of the influence of his mother’s extraordinary dedication to ensuring he achieved everything he possibly could in life.
Tito’s writing flips between the first and third person. He describes experiences that are typical of what we know of autism – intolerance of change or of novel environments, which can provoke screaming or withdrawal; great difficulty in social interactions; learning new skills is a formidable challenge. But much of what he says I found challenging to my preconceptions. For example although Lorna Wing (who wrote the foreword to the book) comments on his self-absorption I was struck that he seems aware, at least in retrospect, of the effect he has on other people – his mother’s love and determination which comes coupled with frustration and times of distress, and also how others must see his odd behaviour.
A standard view (cliché?) about autism is that the main problem is an inability to form an understanding of the mental life of others. And yet one of Tito’s main self-reported struggles seems to be to exert control over his own actions. He cannot copy movements. Even when he knows what he wants to do he cannot initiate actions. He comments on all this without it being entirely clear how he feels about it. ”He needed to move on. He needed to write”. But then “The boy continued to flap and to remain mute”.
Tito writes poetry and tells stories. His book The Mind Tree is astounding. And he seems to take some of the playfulness of creativity into his sessions with clinicians and therapists: “He got proud of his worthless worth” and notes that “The boy was too much flattered by the remarkable impact he made on the people who wondered how he possessed such a gift”.
Tito and his mother Soma now live in the USA, and online it is easy to find some scepticism expressed about Soma’s attempts to generalise her approach with Tito to a more universally applicable therapeutic approach. It would be a shame if contention there detracted from this remarkable book – the story that Tito has to tell and the creative ability he has to show us.