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.

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Review
Books
Culture
Re-enchanting
6 min read

Re-enchanting… reading lists

As a Re-enchanting series ends, here's our guests and staff book picks.

Tom Rippon is Assistant Editor at Roots for Churches, an ecumenical charity.

A pile of books on a bedside table.
Jodie Cook on Unsplash.

Inside a book, we find ‘a world that reflects our own, but isn’t this world’, at least that’s what David Bennett had to say when he appeared on our Re-enchanting podcast earlier this year, and given the power of books to transport us beyond the everyday, what better way to start each episode than with the question, ‘what are you reading?’ 

Many of our guests are self-confessed bookworms and admit to having several books on the go at once, dipping in and out according to their mood and the time of day, and a sizeable number profess a love of audiobooks.  So, after a blitz of the Seen & Unseen back-catalogue – accompanied by many sidetracks into our guests’ ponderings with Belle Tindall and Justin Brierley – here’s what’s on the Re-enchanting reading list. 

Chapter one: by way of introduction 

At first glance, it would seem that our guests are a serious bunch, because the Re-enchanting book list is dominated by non-fiction. Works on the intersection of science, religion and society are clear front-runners, ranging from R.H. Tawney’s Religion and the Rise of Capitalism (Francis Spufford’s pick) to Charles Foster’s The Selfless Gene (Paul Kingsnorth), but more general works also abound. An interest in re-enchantment clearly involves careful study of the everyday from cradle – Jonathan Haidt’s The Anxious Generation (Sarah Irving-Stonebreaker) – to grave, for example, Stephen and Cynthia Covey’s father-daughter collaboration, Live Life in Crescendo, Your Most Important Work is Always Ahead of You (Michael Hastings). Some encouraging words at a time when questions about ageing and illness are on the national agenda. 

Chapter two: heading (east) into deeper waters 

As a podcast that invites its guests onto the roof of Lambeth Palace Library, it will come as no surprise that our guests’ picks also feature a selection of books on theology and spirituality. Nick Spencer recommends Prophecy and Discernment by Walter Moberly, whilst Brooklyn pastor Rasool Berry brings us back down to earth with Sam Alberry’s What God Has to Say About Our Bodies: Why the Gospel is Good News for Our Physical Selves.   

Many guests, however, seem to be directing our attention eastwards towards the spirituality of Orthodox Christianity; their picks include classics such as Michael Kozlov and Arsenius Troyepolsky’s The Way of the Pilgrim (Martin Shaw); and The Art of Prayer by Hegumen Khariton (Molly Worthen); as well as a newer work by the twentieth-century saint, Porphyrios of Kafsokalyvia, Wounded by Love (Paul Kingsnorth). But this road of literary spirituality doesn’t stop in Eastern Europe, it keeps going until our arrival in Nepal via the memoirs and meditations of Tenzin Palmo in Cave in the Snow: A Western Woman’s Quest for Enlightenment (Sabina Alkira). Stories of global faith for a globalised world indeed.  

Chapter three: story of my life 

It is said that the best stories are the real ones and our guests apparently agree: biographies and memoirs pop up repeatedly throughout their picks. Sticking with the theme of spiritual journeys, our guests are reading works which recount journeys away from faith communities, such as Megan Phelps-Roper’s Unfollow (Glen Scrivener), as well as ones deeper into faith. One of the most striking of these is James Pennington’s nineteenth-century abolitionist pamphlet Two Years Absence (Esau McCaulley). Pennington was a self-taught pastor who left his church community following his re-enfranchisement to study theology at Princeton. His pamphlet was adapted from a sermon given to prepare his congregation for the journey which would take him deeper into his faith, but away from the community in which he lived it out. Many stories begin with a ‘setting out’ only to ‘return home’ in the closing pages, and perhaps this structure bears a closer resemblance to real life than it may initially appear? 

Venturing away from the spiritual, but remaining in the political vein, perhaps the most frequently mentioned book so far has to be Rory Stewart’s memoir Politics on the Edge, himself a Re-enchanting guest way back in series 2. Alternatively, readers who have had their fill of politics may wish to try the memoirs of polar explorer Robert Bartlett, as recommended by Molly Worthen, or, to take a leaf from Milton Jones, the equally fascinating and no-less-hair-raising Windswept and Interesting: My Autobiography by Billy Connolly. 

So far, fiction has not featured much amongst our guests’ recommendations, but tentative favourite would be the Pulitzer prize-winning novel by Barbara Kingsolver, Demon Copperhead.  Set in present-day Appalachia and inspired by Charles Dickens’ David Copperfield, Demon Copperhead touches on the poverty and struggles of America’s left-behind communities, who today find themselves worlds away from the glitz of global politics, yet wielding a political influence that extends far beyond their own borders. 

Chapter four: A whole new world or the world reimagined? 

In the instances when fiction has appeared in our guests’ bed stands, it seems that they have a taste for fantasy and science fiction.  The favourite by far here is C. S. Lewis, with several guests reminiscing of their experience of reading Narnia, but for Jack Palmer-Wright the experience of rereading The Lion, the Witch and the Wardrobe took special significance this year as he introduced it to his five-year-old for the first time. Adult readers looking to relive the experience of discovering Lewis for the first time should check out Lewis’ lesser-known Space Trilogy, particularly That Hideous Strength: A Modern Fairytale for Grown-Ups, recommended by Holly Ordway as a prophetic tale for today’s world.  

Other stalwarts of the fantasy genre also made an appearance, such as J. R. R. Tolkien and J. K. Rowling, but perhaps the most surprising recommendation to come out of Re-enchanting would be Margaret Cavendish’s The Blazing World (Frank Skinner). Published in 1666 and considered to be perhaps the first science-fiction novel, The Blazing World is set in a parallel world with fantastical technologies reached via the North Pole. The characters, including Cavendish herself, criss-cross between worlds as the novel moves through its three sections, ‘Romancical’, ‘Philosophical’ and ‘Fantastical’, exploring questions of social organisation, governance, and whether it is really possible to create a new religion complete with a fully fledged religious literature. Given the ongoing conversations about the place of religion in the twenty-first century, perhaps it’s time for Cavendish to make a comeback. 

Chapter five: what next? 

Stories are made of words but they are also made of silences, and these narrative gaps are just as key to getting a story to take flight as the most well-chosen, well-balanced phrase.  The biggest gap in our Re-enchanting reading list is poetry.  Books about poets – the Romantics, Seamus Heaney, to name a couple - have made an appearance, but we have yet to receive a straightforward poetry recommendation from any of our guests.  So, should you feel the need to fill this gap, here’s a few from us for anyone looking for something to dip into over the coming year. 

  • Sara Teasdale  
  • Mary Oliver 
  • Gerard Manley Hopkins  
  • Jackie Kay 
  • Jalāl al-Dīn Muhammad Rūmī 
  • Victor Hugo 

Happy reading and see you in 2025 for more Re-enchanting. 

2024 staff picks

And here’s the picks from the rest of the Seen & Unseen editorial team. 

Graham Tomlin, editor-in-chief 

  • Sally Rooney: Normal People
  • Jessie Childs: The Siege of Loyalty House: A New History of the English Civil War

Belle Tindall, staff writer 

  • Selina Stone: Tarry Awhile .
  • Sally Rooney: Intermezzo.  
    Frank C. Laubach: Letters from a Modern Mystic.   

Nick Jones, senior editor 

  • Jon Fosse: A Shining
  • Mary Millar: Jane Haining – A Life of Love and Courage
  • Peter Ross: Steeple Chasing

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