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
General Election 24
Leading
Politics
3 min read

Let’s not make saviours out of Sunak or Starmer

Politicians do not live up to messianic billing.
Looked down upon by crowds in galleries, a politician stands amid a throng of supporters
Kier Starmer at Scottish Labour's election launch.
Pam Duncan-Glancy via Twitter.

It was 2015 and I thought Ed Miliband was the saviour of the free world. Remember, this was before Covid and Brexit and Trump, and politics seemed so binary and easy. Left-Right. Government-Opposition. Thatcher, Major, Blair, Brown. Monoliths in my teenage eyes.  

The excitement of the novel 2010 hung parliament and the injustice (as I saw it) of Nick Clegg (remember him?) ‘getting into bed’ with David Cameron instead of Gordon Brown had carried me all the way to the A-level Politics classroom. I was watching Ed attempt to tell Jeremy Paxman that, hell yeah, he was tough enough. A hung Parliament threatened again, until it didn’t. The Conservatives won enough to govern and the hope swelling in my breast was trodden down by spending upper sixth watching Donald Trump sweep to power.  

I have learned enough since then not to cast Sir Kier Starmer in the same mould. Sunak’s snap election is not a choice between two saviours, but two politicians compromised by the grit of reality and the inheritance of a set of global circumstances. 

Boris Johnson and Liz Truss, figures held up for their political savvy and economic foresightedness respectfully. To put it mildly, they did not live up to their messianic billing.

Often, we can make these political figureheads into messiahs, those who will come on a wave of hope to fix the nation’s problems, govern wisely, and bring unity. Perhaps, approaching July 4th, these feelings are intensified.  

There is much in these pages excellently denoting the deliberate co-opting of Christ for nationalistic political purpose, and I am suggesting that we are often willing collaborators, bringing a religious devotion to our ideology and those which propound it: “If only it were insert politician who were running the country, then everything would be much better!”  

This almost cultic reverence was present in some circles surrounding both Boris Johnson and Liz Truss, figures held up for their political savvy and economic foresightedness respectfully. To put it mildly, they did not live up to their messianic billing. For others, this devotion was saved for Thatcher, Blair, Cameron, Corbyn.  

A word of wisdom to my teenage self? Passion for politics is no bad thing, but devotion to human ideology is misplaced. 

Rishi Sunak and Sir Kier Starmer do not quite have the same star power, with Starmer especially coming across as the more doughty-and-dependable type. But it was ever thus. Human nature is inherently cyclical, and we swing from one archetype to the next, always in the hope that the next one in will do a better job than the last. 

The messiah is of course a Jewish concept, the awaited one who will deliver them from their enemies and lead them to a state of peace. Many have claimed to be the awaited one, but only one has convinced a multitude. We read of Jesus of Nazareth in our carol services every year that the government will be on his shoulders and the greatness of his government and peace will have no end. At the end of this year in which a new government is formed, perhaps these age-old claims have increased significance. They invite us to look beyond the immediate and the physical, to look beyond those names who dominate headlines, claiming to be the one who will deliver change and reverse decline.  

Saint Paul has some wise words for those of us wondering how we can engage with a political world feeling more divisive and divided than ever. He tells us to pray for our government, whether you want Labour or Conservative and end up with the reverse. It is a tough job, and he tells us to give due honour to those who lead us, engaging with politics, giving it the respect it is due. But looking to politicians for deliverance? St Paul would call that folly. He only had one saviour. 

For deliverance, we must look beyond the territorial and the electoral, to one who does not promise vote share or positive polling, but sacrifice and justice; to one who comes to us not with populism or popularity, but with lowliness, humility, and integrity. A word of wisdom to my teenage self? Passion for politics is no bad thing, but devotion to human ideology is misplaced. Do not put your trust in the cycle of human proclivities, but in the one whose government will have no end.