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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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4 min read

Why we should mourn the death of the semi-colon

In our busy, frenetic lives, we need that small pause more than ever.

Paul is a pioneer minister, writer and researcher based in Poole, Dorset.

A woman stands across a busy roads, looking up from her phone in a sad way.
Su San Lee on Unsplash.

In the morning news; a headline about the decline of a species. Thankfully not a rare rhino or butterfly this time. It’s a punctuation mark. The semi-colon is an increasingly endangered creature. According to recent research it has declined in use by 50 per cent in the past two decades. This on top of a 70 per cent slide in usage between 1800 and 2000. Further research suggests that 67 per cent of students rarely use it and over 50 per cent wouldn’t know how to anyway. 

I’m kind of indifferent on the merits or otherwise of the semi-colon. But I at least appreciate the option. So, its value feels worth defending. Who knows what unintended consequences in the ecology of language might occur if we lost it all together?  

The semi-colon was invented in the 15th century by a scholar and printer Aldus Pius Manutius the Elder (whose name might have benefited from a semicolon itself). A hybrid between a comma and a colon, the semi-colon invites a pause; it’s a moment to breathe. And it opens enough space to reflect on what might be being said between what went before and what comes after. It signals a kind of meaning in the gap. It creates a hint of resonance beyond the plain meaning of the words of a sentence.  

Despite its enthusiastic use by the likes of no less than Jane Austen and Charles Dickens it has certainly come in for some stick over the years. Kurt Vonnegut famously said of semi-colons ‘all they do is show you’ve been to college.’  Who knew two marks on a page could signal such elitism? The semi-colon says, ‘you're trying too hard’. Or it might just say, ‘why did you do that?’, since so many people fail to understand what it represents. Novelist John Irvine reckoned readers ‘think the author has killed a fruit fly directly above a comma’. 

So what is killing off the semi-colon? Well, if the statistics above are to be believed it could be as simple as a decreasing understanding on how to use it. Though of course there are feedback loops here. We learn grammar and punctuation as much by reading as by being taught. Others point the finger at the breathless world of social media. As more and more of our communication is constrained by space and time, the semi-colon’s quiet request for a pause for consideration is being largely ignored.  

We need semi-colons if our lives are to be more than just an incessant flow of connected moments .

If this is the case then the semi-colon is another species within a kind of mass extinction which is the result of the great acceleration of our age, alongside the coffee break, lunch break, walk round the block and long stare out of the window. These are simply things that we don’t have time for anymore; we wonder if they had any value in the first place. The semi-colon is largely being replaced by the dash. Which is pretty ironic when you think about it.  

Perhaps concern over the loss of this little mark is in an awareness that it’s a kind of canary in the gold mine of our culture of acceleration. The loss of the semi-colon is a sign of the loss of something far more significant: the rhythms and cadences of our lives that afford pause, reflection; that open up the kind of spaces where creativity; meaning; imagination; spirituality happen. 

The semi-colon reminds me, strangely, of the Hebrew psalms. The monastic tradition includes regular communal singing (or saying) of the psalms. Typically, these poems, which formed such a key part of Hebrew worship, work on the basis of what is known as parallelism. Essentially each thought in a psalm is composed as a sentence in two lines. The two halves of these sentences are parallel, in the sense that they both make statements about the same thing. Sometimes these statements say the same thing differently. Sometimes one half of the sentence builds on another. There are endless creative ways in which the psalmists use this simple device.  

When psalms are used in prayer or worship parallelism is often observed by introducing a pause at the end of the first half of the sentence. It's an odd tradition if you are not used to it. An established monastic community naturally feels the length of pause together. Visitors to a service in a monastery often end up coming in early.  

Yet, with time you begin to realise these pauses are a wonderful thing. The pauses create a rhythm and time signature that invites reflection. The pause says ‘take your time, there’s a lot of meaning here in all these similes and metaphors, what might they mean to you?’ Perhaps even ‘what, in this moment to breathe, might God be saying to you?’ 

There’s a feeling for so many of us that life is starting to feel a bit like the final chapter of James Joyces’ Ulysses: devoid of punctuation. We need semi-colons if our lives are to be more than just an incessant flow of connected moments. And we need to learn how to use them. We need practices that make space for the undervalued attributes of reflection, daydreaming, prayer. In that sense saying the psalms may be a practice worth giving time to. 

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