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
Character
Comment
Leading
4 min read

Carney’s call for character still resonates now more than ever

In both business and politics, the vocation of public service is at risk.

Emerson Csorba works in deep tech, following experience in geopolitics and energy.

Mark Carney sits between two other speakers, holding a mic.
Mark Carney on the campaign trail.

On May 27 2014, a group of business, political and faith leaders gathered in London for the inaugural Conference on Inclusive Capitalism.  

As a 23-year-old Masters student at Cambridge University at the time, it was a defining moment, this in the final months of my first stint in the UK. One of three young people invited, I had prepared carefully and waited impatiently in line in central London on a boiling summer evening.  

The most poignant moment of the conference, in hindsight, was less the attendees or the historic venue, but rather a particular speech that I continue to reflect on a decade later.  

The speech in question was one given by the then Bank of England Governor, the Canadian Mark Carney, and it was called ‘Capitalism: Creating a Sense of the Systemic’.  

It was, and remains, one of the most impressive speeches I have heard, and whose message is as important as ever.  

It is a message that Canadians today, as well as others living in Western democracies, need to hear as much as at any time in recent history.  

In the wake of the financial crisis, Carney raised a point that is seldom asked in business or political circles - that of responsibility, and more specifically, of vocation. It is as follows: 

"To build this sense of the systemic, business ultimately needs to be seen as a vocation, an activity with high ethical standards, which in turn conveys certain responsibilities." 

And soon after: "It can begin by asking the right questions. Who does finance serve? Itself? The real economy? Society? And to whom is the financier responsible? Herself? His business? Their system?" 

He references Michael Sandel, the philosopher who in his book What Money Can’t Buy: The Moral Limits of Markets takes aim at the "skyboxification" of American life.  

The example used by Sandel is taken from the sport of baseball. In the not-too-distant past, people from across all walks of life sat together in the stands, the low ticket prices allowing baseball to be the great unifier across divides.  

Today? Expensive box seats see the rich and poor seated in different areas, the rich even physically above - looking down on - others. The same goes for ice hockey, soccer, or other sports which no longer see diverse families, across income levels, sitting together.  

In short, if you impose a price on a good or increase the price of a good significantly (baseball tickets), the nature of value of that good changes, often irreparably so. Lost is a sense of fairness, and a reduction in the potential to repair divides.  

In short, the idea of public service - that to be first, you must come last - seems increasingly bizarre to people. 

We live in a world where immediate gratification and personal enrichment are particular cultural values. If there is any tell on the character of President Trump and his new White House, it is the launch of the Trump and Melania meme coins before the Presidential Inauguration: politics used for the advancement of personal interest.  

In short, the idea of public service - that to be first, you must come last - seems increasingly bizarre to people. (A conversation with a young person several weeks ago struck me especially on this front, in which I had to explain that the purpose of politics is to serve others, not yourself.) 

Carney's 'Creating a Sense of the Systemic' speech is therefore a reminder of what we need from political leaders: people who, outside of compelling rhetoric focusing on putting their nations first, actually consider their responsibilities toward others and who take these responsibilities seriously.  

These responsibilities are vocations to which we are called. The responsibilities are not about us but rather are part of the system (made up of people and institutions) of which we are a part, and beyond. 

In Canada, the potential election of Mark Carney as Leader of the Federal Liberals, and in turn as Prime Minister, is a step in the direction of a public service focused on responsibility and vocation. It is a step toward a more vocationally oriented public service, which our world needs.  Whatever one's partisan affiliations, having political leaders acting with a sense of responsibility toward people and a higher calling beyond themselves is something we should embrace.

If Carney is to channel the same energy, poise and focus of this May 2014 speech, then there is a good chance the Canadian Federal Liberals win a future term. This is because our world is, deep down, yearning for political leadership based on real character, sense of purpose and responsibility beyond the self. But there is equally an opportunity for Pierre Poilievre to do the same, emphasizing the need for character, purpose and responsibility toward Canadians.

For Canada, it is a focus on responsibility, a sense of the broader system and our calling as Canadians in the world that can serve as a foil to the leadership in the United States.

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