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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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5 min read

The Sycamore Gap vandals were chasing the wrong sort of fame

Fifteen minutes of notoriety is nothing - just ask St Cuthbert.

Graham is the Director of the Centre for Cultural Witness and a former Bishop of Kensington.

A felled decidious tree lies sprawled on the ground. The freshly sawn stump and roots are in the foreground
The stump of the felled sycamore tree.
Wandering wounder, CC BY-SA 4.0, via Wikimedia Commons.

It was Andy Warhol who is said to have uttered the famous statement: “In the future, everyone will be world-famous for 15 minutes." Never mind the fact that the quotation has been attributed to other people as well, whoever came up with it first can hardly have anticipated how quickly it would come true.  

In our times, social media has democratised information. We all now have our own individual press office, issuing our considered statements to the world in the form of Instagram or Facebook posts, comments on X, reels and the like. Secretly we all hope one of our gems of wisdom, a joke or a video of something weird will go viral - in a positive way - and we will get our 15 minutes of fame.  

I was thinking of all this recently on a walk by Hadrian's Wall in Northumberland in the North-east of England. It so happened that on that very day, the Wall was in the news, as the two men who had cut down the famous tree at Sycamore Gap – the one featured in the Robin Hood film - were convicted of the crime. We looked up at Sycamore Gap, and it was just that - a gap – denuded of its tree, it is now just like any other depression in the escarpment over which Hadrian's Wall runs. Only you couldn't avoid the memory of the distinctive tree silhouetted against the sky which was no longer there, like an awkward smile with a tooth missing. 

The story of Daniel Graham and Adam Carruthers is a pretty unsavoury one. Two fairly low life characters without a great deal of purpose seem to have thought of this as a clever stunt which would somehow impress people. The video would go viral, they hoped, and they would be famous - maybe for 15 minutes - basking in the global coverage of their daring action. They seem to have totally miscalculated the affection with which the tree was held and the outrage this stupid act generated. They got their notoriety but not in a good way. Today they wait anxiously to see whether this mindless act of vandalism will lead to a prison sentence. 

It is perhaps another symptom of our culture’s desperate desire for fame. Social media is full of influencers who are famous for not much more than being famous. Similar stunts, one more outrageous than the other are performed daily, recorded on YouTube and put out there to gain attention. We are addicted to fame. 

The hapless pair were desperate for their moment of fame and got it in a particularly nasty form.

On the same Northumberland trip, not very far away, a very different approach to fame caught my eye. Cuthbert, a seventh century hermit was one of those hardy Christian monks and missionaries who spread the faith in these islands in the wake of the fall of the Roman Empire. He was known for his piety, astonishing miracles and sympathy with nature. His biographer, the Venerable Bede, tells us he would walk into the cold North Sea, standing up to his neck in water to pray, in order to increase his ability to focus on God, the object of his prayers, not the yearnings of his body. On coming out of the water, sea otters would come and warm his feet, sensing that this man was in tune with the heart of the universe and should be cared for and protected.  

As his fame grew, Cuthbert tried to find more and more ways to run away from it. He was given permission to leave his monastery in Lindisfarne to go out alone to live on the remote Farne islands, far from prying eyes, giving him the freedom to focus on the one object of his desire - to know God through a deep life of prayer and meditation. People would try to come to see him, fellow monks bringing supplies, or pilgrims looking for a word of wisdom from the holy man, yet his focus was ruthless. Eventually, says Bede, “he shut himself away from sight within the hermitage, rarely talking to visitors even from the inside, and then only through the window… in the end he blocked it up and opened it only to give a blessing or for some definite need”. 

The difference between Graham / Carruthers and Cuthbert could hardly be more stark. The hapless pair were desperate for their moment of fame and got it in a particularly nasty form - fame that turns out to be more like shame. Cuthbert fled from fame, longing for the attention not of other people but of his Maker and Redeemer.

Cuthbert’s relentless pursuit of God, and its results in a remarkable life - weird in a different and more nourishing way than the stunts on YouTube - fascinated people. After he died, his bones were transferred to Durham Cathedral where they still lie today. You find the name of St Cuthbert everywhere in the North East – on schools, road signs, coffee shops and fishing boats. It’s a name that will endure after the destroyers of the sycamore tree are long forgotten. We're still talking about Cuthbert 1,400 years later. 

Fame is an elusive and dangerous thing. Tom Holland once called it “a beast that you can't control or be prepared for.” If you chase it, it rarely turns out well. More often than not you get the wrong kind of (unwelcome) fame. The best kind comes when you’re not making fame itself the thing you’re looking for. If you ignore it, and seek something more satisfying, something really worth attention – which for Cuthbert was God, the source of all beauty, truth and goodness - you won’t be worried whether you’re famous or not, because your heart will be full of something much more lasting and worthwhile.

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