Review
Books
Care
Comment
Psychology
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.

Support Seen & Unseen

Since Spring 2023, our readers have enjoyed over 1,500 articles. All for free. 
This is made possible through the generosity of our amazing community of supporters.

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
Editor-in-Chief

Article
Books
Culture
Original sin
Trust
6 min read

When the penny drops, on the Salt Path or a London street

Being taken in unleashes dark, unpalatable emotions

Susan is a writer specialising in visual arts and contributes to Art Quarterly, The Tablet, Church Times and Discover Britain.

A painting show Adam and Eve wide-eyed after the fall.
Paradise Lost, Emil Nolde, 1921.
Nolde Foundation Seebüll.

Doubts about the honesty of The Salt Path, Raynor Winn’s memoir of walking the Southwest coastal path with her ill husband Moth, have raged in the past weeks. Investigations revealing the duo’s real names, financial history and the medical unlikelihood of the reversals in Moth’s degenerative condition, as presented in the book, provoked thousands of readers to express anger and disappointment at being duped. But being taken in and learning from it is part of being human: a lesson in how to trust more wisely, rather than not trusting at all 

Last summer I was scam mugged on my local high street. Passing a frail pensioner pulling loose notes from his pocket, I picked up his fallen tenners and returned them. Six steps later, a woman shrieking I’d thieved her “granddad’s” money grabbed my arm. Cue a few minutes of struggling and shouting, before I got away, bruised and humiliated, but still gripping my bag. Vowed afterwards to always walk on by if I saw someone needing help on London’s streets, as it could be a set up. 
But this detachment didn’t last. Being a goodish Samaritan is hardwired, even on the capital’s occasionally mean streets. We want to support and connect with our brothers and sisters. Withdrawal from our fellow citizens makes us more unsafe, not less. As Kaya Comer-Schwartz, London’s Deputy Mayor for Policing and Crime, said: “The safety of our town centres is more than just policing – it's about building stronger, more connected communities where everyone feels secure.” 

Certainly, a police officer would have been a welcome sight while tussling with my would-be conwoman. But I was grateful to the handful of people who stopped, as they would be my witnesses if the assailant went full mugger, in frustration that the ploy for me to open my bag had gone awry.  

Memoirs also entreat us to bear witness, explaining the betrayal felt by some of the Salt Path’s two million readers who invested emotion and empathy in its uplifting tale of a hard -done -by couple finding solace in nature. Identifying with the memoir’s midlife, everyman duo and believing a long trek through the Southwest is a silver bullet for homelessness, financial woes and degenerative medical conditions, does not make the Salt Path’s former fans saps, it makes them beautifully human.  

Raynor and Moth’s unmasking as Sally and, still remarkably healthy, Tim Walker, who lost their Welsh farmhouse following accusations of embezzlement against Sally and owned a property in France when claiming to be homeless, has lifted the lid on the publishing industry’s hunger for real life stories, with morally simple, feelgood narrative arcs. Bonus points if the tale includes a “nature cure”, where nature is not just a balm for grief and pain, but somehow vanquishes it altogether. Fact checking takes a lower priority than shaping a story into a series of emotional hot button scenes, with a neat, satisfying ending. And publishers may be guilty of their own sleight-of-hand by incentivising booksellers to personally recommend to customers a list of predetermined titles, creating the aura of ‘word of mouth’ hits. 

Mean Girls’ great line “Jealous much?” captures journalists’ enthusiasm, mine included, for the Salt Path scandal. How can bestseller success pass over writers with have spent decades crafting phrases like popular orange vegetable to avoid writing carrot twice, yet shine on Raynor/ Sally’s repetitive, clunky prose? ”We lost. Lost the case. Lost the house.” Her dizzying ascent from unknown debut non-fiction author, with only a piece in the Big Issue to her name, to a book deal with Penguin, seems to other writers a mystery as great as anything in her trekking tale. 

Feeling deceived unleashes these dark, unpalatable emotions such as envy and desire for revenge. I long nourished fantasies of catching the scammers in action and deflecting their next victim by shouting “Look! Granddad’s dropping his money again,” before handily nearby forces of law and order brought them to book. Even if you lose little materially from a con, the loss of dignity and sense of agency from becoming a mark, a manipulated, dehumanised bit player in another’s exploitive narrative, takes time to get over.  

Popular accounts of online romance fraud feel designed to give audiences a sense of superiority, ‘I’d see that coming a mile off’, over the victims, reinforcing their sense of shame. Yet evidently with many thousands being lured by romance fraud, the perpetrators use effective psychological coercion techniques. Omniscient superiority needs to be replaced with empathy and support for fleeced, broken-hearted victims. 

Grifters are part of life, but their reductive, empathy-free, world view does not have to be. As singer Nick Cave’s counsels, cynicism is not the answer: "Cynicism is not a neutral position — and although it asks almost nothing of us, it is highly infectious and unbelievably destructive. In my view, it is the most common and easy of evils.”  

Religious origin stories, including the Garden of Eden, contain an element of falling for a trick. Eve does the serpent’s bidding, and she and Adam are banished from paradise. “So he drove out the man; and he placed at the east of the garden of Eden Cherubims, and a flaming sword which turned every way, to keep the way of the tree of life.” Emil Nolde’s painting Paradise Lost, 1921, catches perfectly the moment the penny drops with Adam and Eve on the consequences of falling for the serpent. Yet by the following chapter of Genesis they start a family, moving on with life with new insight. 

To never confront disappointment would be to remain as an infant, without the opportunities to grow and develop as adults. 

In the Good Samaritan, one of the best-known parables, Jesus transforms the categorising question ‘who is my neighbour?’ into the universal quest of ‘how can I be a better neighbour’? Our bonds with our communities, a sense of shared humanity are the best, possibly the only defence, against those who would mislead us or do us harm. 

Celebrated American journalist Ira Glass said: “Great stories happen to those who can tell them.” Published in 2018, The Salt Path’s direct, film-like scenes of survival against the odds and against the elements, would have resonated with all the people who saw their security and lifestyle nosedive after the 2008 financial crash, never to recover. Suspending disbelief, Raynor and Moth’s 620-mile wild camping trek, represented a symbolic railing against a heartless economic system. 

My experience of the penny dropping a fraction too late to escape the scammers, has made me revise my self image as a streetwise Londoner. On my way to pick up holiday money that afternoon, my head was full of travel plans rather than focused on the here and now, a tendency I must curb.  

If my assailant was writing her memoir I like to think our scrap would be the opening chapter, where she is at a crossroads of having to mug somebody in broad daylight, with a small, attentive audience, or rethink her street hustling career. Dressed in a fake leather biker jacket on a hot summer day - the smell lingers in my olfactory memory - her outfit was possibly an homage to Catherine Zeta Jones’ catsuit in Entrapment. As we know from all the TV series on con artists, looking the part is key. 

 Finding out the reality of her life since I broke free of her grip 11 months ago would not be hard, as she is now stationed outside Premier Foods by the tube station, in much scruffier clothes, asking for a pound for water. This sideways, or probably downwards move, in the street economy appears to be working out for her, and the peace of the neighbourhood. 

Despite having lived in small rural communities for decades, throughout all The Salt Path controversy, nobody has come forward to say the Winns / Walkers were good neighbours. Setting this right could be their next adventure and next bestseller. 

Support Seen & Unseen

Since Spring 2023, our readers have enjoyed over 1,500 articles. All for free. 
This is made possible through the generosity of our amazing community of supporters.

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
Editor-in-Chief