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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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Interview
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10 min read

Transformer: how Jurgen Klopp gave belief to a team and city

Neil Atkinson talks about his new biography of the redemptive Liverpool manager.
A stern looking  football manager stares hard, with a stand of supporters behind him.

“But also I am shyer than everything would suggest.” It’s genuinely a surprise to hear this early on in my conversation with Neil Atkinson about his new book, Transformer: Klopp, the Revolution of a Club and Culture. Anyone who has heard him speak on The Anfield Wrap podcast, or many of his other media appearances, might soon get this impression that this is a man who thrives off the company of others, something that comes through in the book, too.  

Atkinson is so keen to stress the notion that football is meant to be shared with others, that any thought of him being shy really does jar. As if to make my point, when I begin by asking him why he wrote Transformer, he begins the story back in the ’21-22 season, the one he’s “almost got the most fondness for” from Jürgen Klopp’s time as Liverpool manager.  

The reason? “The redemption after the season under Covid and the idea of everyone being back together.” 

Redemption may end up being the word that best summarises Klopp’s career. An average-at-best footballer himself, he began his managerial career at Mainz 05 where he secures near-miraculous promotion to the Bundesliga in 2004, shortly followed by relegation again. He then moves to Borussia Dortmund, beating presumptive champions Bayern Munich to a Bundesliga title, before the team implodes, prompting Klopp’s resignation in 2015. Later that year, he joins Liverpool, a sleeping giant of European football that finds itself at a remarkably low ebb in its history having narrowly missed out on a long-awaited premier league title in the 2013-14 season. He leaves a much-transformed Liverpool nine years later, having been crowned English champions, European champions, and world champions in the intervening years.  

Klopp also seems to relish redemption stories in his squad, too. Jordon Henderson is nearly sold by Liverpool before Klopp arrives; Klopp makes him captain and he lifts nearly every trophy possible. Klopp signs Andy Robertson from relegated Hull FC; along with Trent Alexander-Arnold, they drastically re-invent the attacking fullback role in modern football. Chelsea reject Mo Salah who then joins Liverpool in 2017; under Klopp he becomes one of the best players in the world, and will go down in history as a genuine Liverpool legend.  

Klopp loves a redemption story because he loves people, values them, and believes in them. He loves to see people redeemed; at their best. 

 

“Liverpool is also uniquely placed – in the way that, I would argue for instance, Baltimore wasn’t – to be able to be a part of global storytelling, but on a uniquely local basis.” 

It’s fitting, then, that Transformer is a book steeped in friendship. In offering his own retelling of Klopp’s nine years as Liverpool manager, the shyer-than-you-might-think Neil Atkinson does so in conversation with the people and places he knows and loves best, and invites you, the reader, to swap in your own. “I’m going to name people and places and they won’t be the same people and places as your people, but that’s fine to substitute; you’ll sort this out. I trust you.”  

This was, it turns out, a conscious choice on his part. “I think that too often now in lots of storytelling, the idea of removing specifics is a real shame … I love The Wire. The Wire could only happen in Baltimore and there’s tons of reasons why, but there’s lots of aspects of that could be made more universal, [for example,] literally the way they talk to each other. But there’s great slabs of The Wire where they’re talking about a Baltimore radio station, because that’s the way people speak [there].”  

To tell the story of Klopp’s time as Liverpool manager is also to tell the story of the city throughout this time. Bill Shankly once famously said: “I was made for Liverpool, and Liverpool was made for me.” At times it has felt as though no-one has come as close to this as Klopp has. For Atkinson, the city’s particular culture and place in society is part of what makes the football club such a compelling team to follow for many around the world. “Liverpool is also uniquely placed – in the way that, I would argue for instance, Baltimore wasn’t – to be able to be a part of global storytelling, but on a uniquely local basis.” 

The language of ‘doubt’, ‘belief’, ‘hope’, and ‘community’ that permeate Klopp’s vocabulary seem to be shaped by the faith and hope he carries with him. 

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This, in turn, is why Klopp’s story is the city’s story. “All of that, I think, is part of why putting that [locality] central really, really matters. And I think it’s never mattered more, ironically, than while Liverpool have gone through a bit of a global explosion under Jürgen Klopp. Many people are bought in because of what they see happening locally withing Liverpool.”  

The story of the city and its people also goes some way to explaining the connection Klopp managed to cultivate with the fans. In his first press conference as Liverpool manager, one throwaway line took on a life of its own and became the motto of Klopp’s tenure: “You have to change from a doubter to a believer.”  

When I ask Atkinson why this phrase resonated so much with fans, again the city itself looms large. “I think it’s a city that likes the idea of belief. That’s just there. That’s literally centuries old. I don’t think you just knock that out [out of the city].” But Atkinson is keen to stress the importance of the other part of the phrase: “I think the diagnosis of doubt is actually the reason why it catches … the doubt part’s more important than the believer part, in a way.” 

Prior to Klopp, headstrong managers like Brendan Rogers and Rafa Benitez had come close to clinching Liverpool’s first English title since 1990 but, by the time Klopp joins in 2015, a growing contingent of fans became unsure that they would ever see Liverpool lift another top-flight trophy again. Klopp’s awareness of and solidarity with the growing doubt of Liverpool fans, is part of what endears him to them so quickly and is what allows him to lead the fanbase into a position of belief once again. 

Despite being a man of deep religious belief himself, Klopp rarely discusses his faith publicly. “So rarely!” Atkinson agrees. “I looked for it, because it's something I like to write about and something I'm intrigued by myself. So, yeah, I looked for it, but there's never enough to hang something onto.” 

As Atkinson points out, this isn’t because Klopp is afraid to share his thoughts on non-footballing maters: “He very much let us know what his opinions were on the European Union, and also wants us to agree with him, it’s worth pointing out. He didn't just have opinions on the European Union. He wanted us to agree with them. He didn't just have opinions on the vaccine. He very much wanted us to agree with him. On faith and his relationship with it, he very rarely spoke about it and so at no point has he asked anyone to agree with him.” 

Again, the context of Liverpool the city begins to clarify the nature of Klopp’s belief. “And I think he sees it as something that's deeply personal. I think he sees it as something that quite possibly – I would argue, and we don’t know – transcends Church attendance. In the same way that, for instance, we have a sense of the mosque that [Mohammed] Salah and [Sadio] Mane have attended whilst they’ve been here, people in Liverpool talk; but we don't know what church Jürgen was going to. That suggests to me that quite possibly there wasn't one. Because at some point someone would have said ‘he goes to our church’ and that never really happens, unless it's something that is so, so unbelievably private. So, I think that there is something non-conformist and I think he does see it as a personal relationship, first and foremost.” 

Despite this, the language of ‘doubt’, ‘belief’, ‘hope’, and ‘community’ that permeate Klopp’s vocabulary seem to be shaped by the faith and hope he carries with him. It’s also one of the things that made him such a compelling voice when he spoke out about some of the difficulties with following football. Whether it’s the overly congested nature of the footballing calendar and the issue of player welfare, the consistent presence of tragedy chanting at football matches, or the awful policing of Liverpool fans at the 2022 Champion’s League Final in Paris, Klopp always seemed able to articulate a better vision for how football, and even society, might operate.  

Football supporters are more than one thing.” They are neither angels nor demons; just normal people with a hobby and a passion, and a life beyond their football club. 

And so, as the conversation continues, we turn to talk about what it’s like being a match-going football fan. “Let's be clear,” Atkinson says, “there's never been some sort of unbelievably rosy moment to be a match-going football supporter … It's also worth saying that a lot of the people who still romanticize that period [i.e., football’s past] tend – but not always – tends to be white men, for whom that period was easier.” 

This isn’t to say that going to football matches is always easy. Atkinson talks about being kept in the ground by police after matches (a pretty common occurrence for away fans), and the small mercy of being allowed to go to the toilet (a less common occurrence). As Atkinson alludes to at the start of our conversation, football under Covid was grim. Despite now being a televised product, games without fans present are simply not as entertaining. And yet there remains an ongoing demonisation of football fans in some sections of public discourse.  

All this is perhaps why he is, somewhat despite himself, keen to see Transformer succeed. “I really want the book to be successful. And I'm quite surprised [by that] … But one of the reasons why I want the book to be successful is … [to show] that football supporters are more than one thing.” They are neither angels nor demons; just normal people with a hobby and a passion, and a life beyond their football club. 

“One of the things that’s made the most people laugh I ever heard at the match – it’s not some remarkable wit – but we were at [Manchester] United once and there was some fella .. and he was shouting terrible things that were like threats and all sorts of nonsense … and some other fella shouts back in a big scouse accent, ‘Shut up! You’re just an accountant from Altringham!’” If readers get nothing else from Transformer, let it be that most football fans are as banal as accountants from Altringham.  

“And that’s why I think the tragedy chanting is actually really quite deeply upsetting because the people that you’re looking at are just the same as you.” If the treatment of football fans – whether by other football fans, or by the police, or by football clubs, or by governments, or by politically-motivated quasi-national organizations – is to get better, this begins by recognizing over and over again, that they fans are just the same as you.  

We start to wrap up our conversation by talking about the future for Liverpool, of life without Klopp. “There was a thing that happened last season when I was working on the book,” Atkinson says, “I could feel the dust of nostalgia settle on people in real time, of the thing happening in front of them that they were nostalgic for. And I hated that.”  

It’s possible to read Transformer fundamentally as a polemic against nostalgia. It’s not just pointless for Atkinson, but actively damaging. “Nostalgia is, in general, a negative force. It’s a draining force. I genuinely do believe this. It’s a force that takes you out of the present into the past. That’s not necessarily bad, but it sends you into an idealized past, which the present will struggle to compete with.” Part of Klopp’s strength as a person and a manager was in recognizing this: “literally part of what Jürgen did when he was managing was go, ‘Stop being f***ing nostalgic. It’s happening now. You have the match now.’” 

Klopp was often such a compelling figure during his time at Liverpool because he was consistently, relentlessly optimistic, occasionally to a fault: “Klopp was a massive cultural force in this country, while being an optimistic, forward-looking, progressive person … but whilst he was that person, Britain went in the opposite direction.” 

And herein lies the task of carrying on Klopp’s legacy, both in Liverpool the football club, and Liverpool the city, and beyond. “Part of the challenge [facing society] is to have a message of enjoyment, of joy within it. Anyone who’s not doing that, is not facing that challenge, in any walk of life, is for me, therefore, not dealing with the core challenge … You’ve got to have the positive, progressive, ‘things will get better’ message.” And where does Jürgen draw his hope from, I wonder? 

 

Neil Atkinson's Transformer - Klopp, the Revolution of a Club and Culture will be published on 26th September, by Canongate Books