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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Article
Comment
Community
Freedom
Politics
4 min read

From councils to conclaves, there's a vital common ingredient

Church and state alike need pluralism.

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

A gate to a churchyard displays a sign saying polling station.
A polling station through a churchyard.
Southwark Diocese

Rumours that Donald Trump may suspend the US constitution in order to seek a third term as president and yet darker threats that his regime may even harbour autocratic ambitions have reminded the West that we should not take democracy for granted. 

Parliamentary democracy, we have widely assumed, is A Good Thing. It’s so good that we not only want to share it but impose it on other populations. The Iraq war on which the UK and US embarked in 2003 was fought, we were told, for freedom and democracy, but it didn’t quite work out like that. 

By democracy, we tend to mean political accountability, through which parties of government exercise power through the will of the people they serve, expressed in regular plebiscites which ensure that no one can cling unchallenged to power. The recent English council elections are a small example of what we mean by that. 

The Trump phenomenon, though, begins to point towards the prospect of a popular will that is in favour of a form of government that doesn’t correspond to our usual liberal assumptions. There are voices, among them that of the writer Margaret Atwood, which anticipate a suspension of US democracy as a consequence of the President’s insanity. 

Most of us in the UK might argue that democracy need to be more than a system in which majorities have their way. We want our governments to be under the law too. And then we have to decide not only what law, but whose law. For those of religious faith, that question will partly and significantly be answered by God’s law, on which arguably western civilisation is built. 

This is where pluralism comes in, without which democracy can’t operate effectively. A state is a collection of political and civic communities, in which individuals have rights and duties, which are protected in law. 

This model is based on Roman legislature, intensely centralised and systemically suspicious of private societies, which is why early Christians were persecuted under it. The collapse of that empire left a legalistic vacuum, into which stepped nation-state kingdoms and the early medieval Church.  

Unlike political parties, we don’t compete for control, but form a community that points towards a saved and healed world. 

It was this latter organ of state that inherited the basic principles of Roman law, centralised, universal and sovereign, under the Pope. And it is that organ that will meet in conclave to elect a new Pope. To describe that election as democratic is more than a stretch, in that the demos, as in common people, are uninvolved and arguably unrepresented. 

So the Church is not a democracy, any more than God is accountable to his creation. Rather the other way around – some denominations speak of God’s “elect”, those he chooses for salvation. In Christian thought, God is a servant king, but nonetheless an absolute and, some who oppose the divine might say, tyrannical authority. 

How are we to respond to an undemocratic deity? One answer to that might be found in that pluralistic characteristic of democracy. We’re not good, frankly, as recognising pluralism in our faith systems. At best, we operate in a kind of absolute duopoly – you believe, or you don’t. A pluralistic model would be one in which we learn of the divine will through the entirety of creation, all manifestations of belief and unbelief, rather than simply our own. 

Pluralism is healthy, in secular politics as well as in religious observance. It has been observed that the old UK political duopoly of Labour and Conservative has been broken in these local elections by Reform UK and resurgent Liberal Democrats and Greens. It’s the polar opposite of the gathering autocracy in the US and gives a voice to a range of worldviews. 

This is not an argument for theocracy, but it is to claim that the Christian tradition rests on the principle that no political order can claim the authority of God other than the Body of Christ. And the Body of Christ incorporates all members of the human race. Unlike political parties, we don’t compete for control, but form a community that points towards a saved and healed world. 

The choice here is between a kind of secular citizenship, a form of multi-culturism which strikes an accord between varied communities on universally enlightened principles. Or we can respond to the energy on which that secular utopia might be founded, in building communities of the willing towards global justice and peace. That is a diversity mission for the Church. 

So, it’s less about democracy than pluralism. And that pluralism has to become a recognisable characteristic of the body of the faithful, which it all too often historically hasn’t been. One can only hope and pray that it might be a mission that is also at the heart of the deliberations that lead to a puff of white smoke from the Sistine Chapel in the coming days. 

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