Review
Books
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7 min read

We don’t have an over-diagnosis problem, we have a society problem

Suzanne O’Sullivan's question is timely
A visualised glass head shows a swirl of pink across the face.
Maxim Berg on Unsplash.

Rates of diagnoses for autism and ADHD are at an all-time high, whilst NHS funding remains in a perpetual state of squeeze. In this context, consultant neurologist Suzanne O’Sullivan, in her recent book The Age of Diagnosis, asks a timely question: can getting a diagnosis sometimes do more harm than good? Her concern is that many of these apparent “diagnoses” are not so much wrong as superfluous; in her view, they risk harming a person’s sense of wellbeing by encouraging self-imposed limitations or prompting them to pursue treatments that may not be justified. 

There are elements of O-Sullivan’s argument that I am not qualified to assess. For example, I cannot look at the research into preventative treatments for localised and non-metastatic cancers and tell you what proportion of those treatments is unnecessary. However, even from my lay-person’s perspective, it does seem that if the removal of a tumour brings peace of mind to a patient, however benign that tumour might be, then O’Sullivan may be oversimplifying the situation when she proposes that such surgery is an unnecessary medical intervention.  

But O’Sullivan devotes a large proportion of the book to the topics of autism and ADHD – and on this I am less of a lay person. She is one of many people who are proposing that these are being over diagnosed due to parental pressure and social contagion. Her particular concern is that a diagnosis might become a self-fulfilling prophecy, limiting one’s opportunities in life: “Some will take the diagnosis to mean that they can’t do certain things, so they won’t even try.” Notably, O’Sullivan persists with this argument even though the one autistic person whom she interviewed for the book actually told her the opposite: getting a diagnosis had helped her interviewee, Poppy, to re-frame a number of the difficulties that she was facing in life and realise they were not her fault.  

Poppy’s narrative is one with which we are very familiar at the Centre for Autism and Theology, where our team of neurodiverse researchers have conducted many, many interviews with people of all neurotypes across multiple research projects. Time and time again we hear the same thing: getting a diagnosis is what helps many neurodivergent people make sense of their lives and to ask for the help that they need. As theologian Grant Macaskill said in a recent podcast:  

“A label, potentially, is something that can help you to thrive rather than simply label the fact that you're not thriving in some way.” 

Perhaps it is helpful to remember how these diagnoses come about, because neurodivergence cannot be identified by any objective means such as by a blood test or CT scan. At present the only way to get a diagnosis is to have one’s lifestyle, behaviours and preferences analysed by clinicians during an intrusive and often patronising process of self-disclosure. 

Despite the invidious nature of this diagnostic process, more and more people are willing to subject themselves to it. Philosopher Robert Chapman looks to late-stage capitalism for the explanation. Having a diagnosis means that one can take on what is known as the “sick role” in our societal structures. When one is in the “sick role” in any kind of culture, society, or organisation, one is given social permission to take less personal responsibility for one’s own well-being. For example, if I have the flu at home, then caring family members might bring me hot drinks, chicken soup or whatever else I might need, so that I don’t have to get out of bed. This makes sense when I am sick, but if I expected my family to do things like that for me all the time, then I would be called lazy and demanding! When a person is in the “sick role” to whatever degree (it doesn’t always entail being consigned to one’s bed) then the expectations on that person change accordingly.  

Chapman points out that the dynamics of late-stage capitalism have pushed more and more people into the “sick role” because our lifestyles are bad for our health in ways that are mostly out of our own control. In his 2023 book, Empire of Normality, he observes,  

“In the scientific literature more generally, for instance, modern artificial lighting has been associated with depression and other health conditions; excessive exposure to screen time has been associated with chronic overstimulation, mental health conditions, and cognitive disablement; and noise annoyance has been associated with a twofold increase in depression and anxiety, especially relating to noise pollution from aircraft, traffic, and industrial work.” 

Most of this we cannot escape, and on top of it all we live life at a frenetic pace where workers are expected to function like machines, often subordinating the needs and demands of the body. Thus, more and more people begin to experience disablement, where they simply cannot keep working, and they start to reach for medical diagnoses to explain why they cannot keep pace in an environment that is constantly thwarting their efforts to stay fit and well. From this arises the phenomenon of “shadow diagnoses” – this is where “milder” versions of existing conditions, including autism and ADHD, start to be diagnosed more commonly, because more and more people are feeling that they are unsuited to the cognitive, sensory and emotional demands of daily working life.  

When I read in O’Sullivan’s book that a lot more people are asking for diagnoses, what I hear is that a lot more people are asking for help.

O’Sullivan rightly observes that some real problems arise from this phenomenon of “shadow diagnoses”. It does create a scenario, for example, where autistic people who experience significant disability (e.g., those who have no perception of danger and therefore require 24-hour supervision to keep them safe) are in the same “queue” for support as those from whom being autistic doesn’t preclude living independently. 

But this is not a diagnosis problem so much as a society problem – health and social care resources are never limitless, and a process of prioritisation must always take place. If I cut my hand on a piece of broken glass and need to go to A&E for stiches, I might find myself in the same “queue” as a 7-year-old child who has done exactly the same thing. Like anyone, I would expect the staff to treat the child first, knowing that the same injury is likely to be causing a younger person much more distress. Autistic individuals are just as capable of recognising that others within the autism community may have needs that should take priority over their own.   

What O’Sullivan overlooks is that there are some equally big positives to “shadow diagnoses” – especially as our society runs on such strongly capitalist lines. When a large proportion of the population starts to experience the same disablement, it becomes economically worthwhile for employers or other authorities to address the problem. To put it another way: If we get a rise in “shadow diagnoses” then we also get a rise in “shadow treatments” – accommodations made in the workplace/society that mean everybody can thrive. As Macaskill puts it:  

“Accommodations then are not about accommodating something intrinsically negative; they're about accommodating something intrinsically different so that it doesn't have to be negative.” 

This can be seen already in many primary schools: where once it was the exception (and highly stigmatised) for a child to wear noise cancelling headphones, they are now routinely made available to all students, regardless of neurotype. This means not only that stigma is reduced for the one or two students who may be highly dependent on headphones, but it also means that many more children can benefit from a break from the deleterious effects of constant noise. 

When I read in O’Sullivan’s book that a lot more people are asking for diagnoses, what I hear is that a lot more people are asking for help. I suspect the rise in people identifying as neurodivergent reflects a latent cry of “Stop the world, I want to get off!” This is not to say that those coming forward are not autistic or do not have ADHD (or other neurodivergence) but simply that if our societies were gentler and more cohesive, fewer people with these conditions would need to reach for the “sick role” in order to get by.  

Perhaps counter-intuitively, if we want the number of people asking for the “sick role” to decrease, we actually need to be diagnosing more people! In this way, we push our capitalist society towards adopting “shadow-treatments” – adopting certain accommodations in our schools and workplaces as part of the norm. When this happens, there are benefits not only for neurodivergent people, but for everybody.

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Review
Books
Culture
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Romance
6 min read

Jane Austen‘s most excellent fan club

The very fine authors who draw inspiration from Jane.

Beatrice writes on literature, religion, the arts, and the family. Her published work can be found here

A book cover with a handwritten title that reads: Jane Austen volume the first
Paolo Chiabrando on Unsplash.

250 years after Jane Austen’s birth, her stories are still an incredibly significant part of our culture. The annual Jane Austen Festival in Bath is gearing up to be bigger than ever; Winchester Cathedral is set to unveil a new statue of Austen later this year; and – perhaps most controversially – Netflix has announced yet another adaptation of Pride and Prejudice.  

Historically, there’s been an overwhelming focus on two elements of Austen’s writing: the Regency setting, and the romance plots. There’s nothing inherently wrong with enjoying these two aspects of her novels. I know I do. But this comes at the risk of underestimating the richness of Austen’s literary legacy. The internet is littered with listicles and blog posts in the format of ‘What to Read Next If You Love Jane Austen.’ Some of these lists will point you to other nineteenth-century literary classics. Others will home in on the romance element, recommending Helen Fielding’s wildly successful Bridget Jones’s Diary, Georgette Heyer’s Regency romances, or even Julia Quinn’s Bridgerton series.  

I’d like to share with you an alternative and more eclectic list of books that I’ve fallen in love with as a lifelong Austen fan. Only one of these books is set in the Regency era; some have a romance as a major part of the plot, others don’t; some share Austen’s realistic writing style, one borders on magical realism. But I think each of these novels or authors brings out a fascinating and often overlooked aspect of Austen’s literary inheritance.  

Anne Brontë’s The Tenant of Wildfell Hall (1848) 

Austen is regularly compared to Charlotte Brontë, who famously wrote Jane Eyre, but I think her younger sister Anne is a fairer comparison. Writing only a few decades after Austen’s death in 1817, Brontë’s style is closer to Austen’s realism than to her own sister Charlotte’s use of gothic tropes and supernatural themes. Like Austen, in The Tenant of Wildfell Hall – as well as in her other novel, Agnes Grey – she focuses on simple language and engaging dialogue. Austen and Brontë also share a deep concern for female education. In several of her novels, notably Pride and Prejudice and Emma, Austen critiques the reality that many young women from middle-class and upper-class families were being taught to value ‘accomplishments’ like dancing and singing over any other form of education, with the aim of attracting a rich husband. Similarly, in The Tenant of Wildfell Hall Brontë’s heroine Helen criticises society’s belief that boys and girls should be educated differently, with boys being taught about the dangers and vices of the world, and girls being kept in ignorance of them. Helen thinks that this attitude makes girls more vulnerable to suffering and disappointment; I suspect Austen would have agreed. 

Barbara Pym’s Excellent Women (1952) 

Now somewhat forgotten, many of Pym’s stories are considered ‘novels of manners’, that is, novels that detail the costumes and values of a particular sphere of society at a particular time in history: in Austen’s case, the middle and upper classes in Regency England; in Pym’s case, the parishioners of a typical Anglican community in post-World War II London. Like Austen, Pym’s writing style is incredibly witty, and both writers favour everyday stories about ordinary people. In fact, Pym took the title Excellent Women from a phrase used by Austen in her unfinished novel Sanditon. These so-called ‘excellent women’ perform seemingly unheroic, small duties for others, the kind that may well go unnoticed, but which are often indispensable in small communities. In Pym’s novel, the first-person narrator, Mildred Lathbury, spends her life between working at a charitable organisation and helping and helping the priest at her local Anglican church. Mildred’s work is often taken for granted, much like the heroine of Austen’s Persuasion, Anne Eliot, whose family are remarkably ungrateful for all the ways in which she eases their burdens. Novels like Pym’s rightly celebrate the quiet bravery of the women who devote their lives to serving others.  

P. D. James’ Death Comes to Pemberley (2011) 

Detective fiction is not the first thing that crosses my mind when I think about Jane Austen. And yet, in a 1998 talk to the Jane Austen Society titled ‘Emma Considered as a Detective Story’, novelist P. D. James made a compelling case that Austen should be considered a precursor to the genre. James argued that a detective novel isn’t defined by the discovery of a murder (nobody dies in Dorothy Sayers’ acclaimed Gaudy Night, for example), but by the unveiling of a mystery. In Emma, Austen scatters clues for us readers along the way but withholds enough information as to keep us – and Emma herself – in the dark. When it’s revealed that Jane Fairfax and Frank Churchill have been lying to hide their secret engagement for the entirety of the novel’s timeline, Emma realises how much she’s been deceived, and it’s this theme of deception that really links Austen’s novel to the detective genre. Yeas after her talk, James ended up writing a detective fiction sequel to a different Austen novel, Pride and Prejudice. Death Comes to Pemberley takes place six years after Elizabeth Bennet and Mr. Darcy’s wedding. A man is found dead on the grounds of Pemberley and Mr. Wickham is the prime suspect. I won’t say any more. It’s my favourite retelling of an Austen novel. 

Kazuo Ishiguro’s The Buried Giant (2015) 

The Buried Giant tells the tale of a Briton couple, Axl and Beatrice, as they set out on a quest to find their long-lost son in a post-Arthurian England where people struggle with the loss of long-term memories. Ishiguro blends a very realistic portrayal of the relationship between a married couple with magical elements such as the presence of a dragon whose breath causes forgetfulness. On paper, this is also not an obvious recommendation, yet memory is a crucial theme for Austen. Persuasion is centred around Anne Eliot’s memories of her broken engagement to Captain Wentworth, which simultaneously bring her happiness and suffering. Mansfield Park’s heroine, Fanny Price, has an equally complex relationship with her past. She often she misses her childhood home, yet part of her is glad that she was taken to be raised by the Bertram family at Mansfield Park, a place which she loves in spite of painful memories of being mistreated by her Aunt Norris. Fanny thinks of memory as the most wonderful faculty of human nature, as it can be at times incredibly ‘retentive’, at others ‘bewildered’ and beyond our control. Ishiguro would surely agree, as that’s precisely what The Buried Giant is about: the ways in which memory can both fail us and yet give us hope, recall suffering and yet brings us closer to those we love. 

 It’s hard to overestimate Austen’s impact on the literary world. And while she’s sparked a revival in literature set in the Regency era, it’s also fascinating to see how she’s influenced writers working in seemingly very different genres from her. Anne Brontë’s novels may be darker in tone, but they show very similar concerns to Austen’s, especially when it comes to virtue and education. Barbara Pym wrote Excellent Women over a century after Austen’s death, yet shared Austen’s interest in highlighting the joys and sorrows of ordinary life. P. D. James found inspiration in Austen despite her own background being in detective fiction. And Ishiguro, despite writing novels ranging from dystopian science fiction to magical realism, has mentioned Austen as an inspiration.  

If you’ve already read all of Austen’s novels, read them again – no one writes quite like her. But once you’ve reread them all, why not try one of these novels next? They may illuminate a side of Austen’s writing that you’ve missed before. 

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If you enjoy Seen & Unseen, would you consider making a gift towards our work?

Do so by joining Behind The Seen. Alongside other benefits, you’ll receive an extra fortnightly email from me sharing my reading and reflections on the ideas that are shaping our times.

Graham Tomlin
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