Review
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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
Weirdness
3 min read

Be more St Patrick

How did the cultural icon win the hearts of the people that enslaved him?

Jamie is Vicar of St Michael's Chester Square, London.

A parade particpant dressed as a bishop in green vestments with a false beard walks down a street.
A St Patrick’s Day parade participant, London, 2022.
Garry Knight, CC BY 2.0, via Wikimedia Commons.

The local pub has a sign out the front: 'Celebrating the Saints'. You would, too, if you were a landlord with Guinness on tap. And as we paint the town green, celebration is even more at the heart of St Patrick’s Day than we first realise. Beyond the frivolity, there’s foundations to be found in this kind of celebrating. St Patrick was a man who knew how to celebrate well. So instead of merely celebrating St Patrick, what if we were to celebrate like him? 

The link to St Patrick himself on St Patrick’s Day might feel as tenuous as a pub’s signage or an American politician celebrating their Irishness, but its origins are worth celebrating. St Patrick didn’t have an easy start. It’s a tale of pirates, a king, and turning around a country. Either born in northern England or Scotland in 385, he was taken to Ireland and spent about six years in forced labour before he had a vision or a dream to escape back to Britain. And yet he was then, remarkably, driven to return to Ireland, despite threats on his life. As someone faced with this antagonism, those of us looking to change the world today can learn a thing or two from his approach. 

In How the Irish Saved Civilization, Thomas Cahill wrote: 'Patrick found a way of swimming down to the depths of the Irish psyche and warming and transforming Irish imagination—making it more humane and more noble while keeping it Irish.' He was able to celebrate the good in what he saw, and inhabit the culture, while remaining distinctive, and changing it from the inside. 

Take a leaf out of St Patrick's book. Patrick had a mission, and Dr George G. Hunter writes that, without compromising, ‘One day, he would feel [the Irish] were his people.' Identifying with the enemy is probably not the first thing we try. When it comes to the battles we're facing as a society, and all the ways norms need to change, can we change ideas robustly, winsomely and gently all at once? Think of the kind of protest today that is polarising, loud, and often destructive rather than constructive. You don’t build bridges by damaging things. Clickbait doesn't mean connection. And pressure rarely leads to persuasion in things of significance. 

As our world finds itself on the rocks, we’d do well to not only get to the bottom of the glass, but also where all the energy for this celebrating originates. 

So how could he celebrate others, while staying secure in himself and his own values? His ability to celebrate others was found in the way he celebrated God. It was during St Patrick’s captivity that he was captured by his faith and became captivated by Jesus Christ. The prayer known as St Patrick's Breastplate shows a man totally immersed in God. It’s both the resolve and the resilience he found in the Trinity that characterised his life. John H. Darch and Stuart K. Burns write: 

'The adventures and escapades of his journey home honed his reliance upon God, and when he finally returned to his family he felt that he should become a priest, and began a period of training that was to last for several years. According to tradition, some years later in 431 Patrick, newly consecrated bishop, returned to Ireland. He devoted himself to evangelism, reconciliation amongst local chieftains, and the training of monks and nuns.’ 

So, as we raise a Guinness or a whiskey, we are inadvertently celebrating a man who changed the hearts and minds of a nation through prayer and the practical presence of the church in the country. As our world finds itself on the rocks, we’d do well to not only get to the bottom of the glass, but also where all the energy for this celebrating originates.