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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Column
Assisted dying
Care
Comment
4 min read

Proposed euthanasia safeguards insult our NHS

We must defend a collective sense of care and generosity.

George is a visiting fellow at the London School of Economics and an Anglican priest.

A gable end mural depicts a nurse in scrubs and a mask turning and looking towards the viewer.
A mural of an NHS nurse during COVID, Manchester.
Mural Republic

It was, I believe, the late political satirist Simon Hoggart who coined the Law of the Ridiculous Reverse, which held that, if the opposite of a statement is plainly absurd, then it was not worth making in the first place.  

This law comes to mind when Labour MP Kim Leadbeater promises that her Assisted Dying Bill will have the “strictest safeguards in the world”, one of which is that those patients who have ordered their fatal dose “would be allowed to change their mind at any time.”   

Where, exactly, has it ever been suggested that an individual, having asked for an assisted death, would not be allowed to change their mind? I’m just wondering which legislator or medical professional has proposed that once a lethal draught has been prescribed then there is no turning back.  

I’m struggling to picture the circumstance in which a terminally ill patient is pinned down and killed, the last words that they hear being: “I’m sorry Mrs Simpkins, but everyone’s gone to a lot of trouble. You asked for it and you’re jolly well going to get it.” 

This is important because, apparently, being able to change your mind about asking for help to kill yourself is one of the strictest safeguards in the world. I hope Ms Leadbeater will forgive me for pointing out that this doesn’t really stack up. 

 And what’s serious about it is that it’s also a massive straw man argument. The clear and rather devious implication is that one of the arguments being made against the introduction of an assisted suicide law is that patients won’t be able to change their minds about it, which I think we can all accept simply isn’t a fact at all. It’s absurd – a Ridiculous Reverse. 

So I’ll defend the NHS with a religious fervour. To my mind, healthcare is a holy mission. We meddle in law with the Hippocratic Oath at our very deep peril. 

It’s also hugely contemptuous of the medical profession in general and rude to the NHS in particular. That’s because there’s a snide impression behind Leadbeater’s comment there may be hundreds of budding Harold Shipman out there, but her powerful safeguards are going to protect us from them. 

We’re in danger of becoming inured to this kind of insult from politicians directed at the NHS. And it’s worth exploring why they might think we need to be protected from unscrupulous doctors and nurses. In this case, one possible reason is that the NHS isn’t being particularly helpful in giving the euthanasia enthusiasts what they want. 

Doctors and their staff have plenty of ethical objections to assisted suicide. But leave those aside for a moment. At the practical level, the NHS has made it clear that it doesn’t have the infrastructure to operate a policy of assisted deaths safely. And it can’t afford to set one up. So a government that introduces assisted suicide is going to have to organise and regulate its own assisted death agency. 

“Oh,” the assisted dying lobbyists seem to exclaim, “we’d presumed you’d do as you’re told.” Just hand out the hemlock. Take your instructions from the legislature. 

But the NHS is better than that. And it’s that kind of high principle that so infuriates feckless politicians. It was the late Nigel Lawson who said, somewhat ruefully, that the NHS “is the closest thing the English have to a religion”. The right wing of politics regularly tells us it’s time to renounce that religion. 

To worship the NHS as a religion would, literally, be idolatrous. But it’s not so to acknowledge its religious qualities. Just look at the word – the Latin religio means something like “good faith”, the essence of who we are, what makes us good. 

The NHS, in its post-war incarnation, has been central to who we are as a people and what defines us. It’s something to do with our collective sense of care and generosity to one another. Its members, like our national Church, make up a single body. 

This is not to co-opt the NHS as the medical wing of the Church. It’s no part of the NHS’s brief to proselytize – rather the reverse; Christian medical staff have been in deep disciplinary trouble for evangelising. It is a profoundly secular organisation. 

So the NHS emphatically isn’t in the business of propagating the gospel. But that’s not to say that we can’t be in the same business. Many priests have stories of their most affirming work being in the company of people of other faiths or of none. 

The NHS’s proud heritage is to offer treatment free to anyone at the point of access. Put another way, it will seek to heal anyone who comes to it. I make no apology for saying that sounds familiar. 

So I’ll defend the NHS with a religious fervour. To my mind, healthcare is a holy mission. We meddle in law with the Hippocratic Oath at our very deep peril. 

And when NHS professionals tell us where we can stick our assisted suicides, I respectfully suggest we give it our solemn attention, rather than patronisingly offering a Law of the Ridiculous Reverse.