Review
Books
Care
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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
Culture
Identity
Psychology
Work
5 min read

Even the office can be a place for self-discovery

What the office makes us feel about ourselves
A model of an office desk and shelves, at which a green plastic person sits leaning into the desk.
Igor Omilaev on Unsplash.

The realisation strikes me as I wrestle to fit my key into the lock on my office door: today I have no memory whatsoever of my journey into work. At my usual time I left the house and got in my car. I drove my usual route to my usual parking space and hopefully I stopped for all the red lights – but in truth I can’t remember any of them. Nor can I remember getting out of my car, locking my car (I hope I did that too) or walking from my parking space to this door, the lock of which is still failing to yield. This, I then realise, is because I am absent-mindedly trying to unlock it with my car key. Rolling my eyes, I reach into my pocket for the correct key… and it is not there.  

Now I’m awake, glancing at my watch; 50 minutes until my first meeting of the day (online). This is enough to drive home again, but not enough to drive home, collect my key, and return to this frustrating door. By now I have established that both coat pockets are empty, so I drop to my knees and start to rummage through my bag.  

It’s not a disaster if I do have to drive home, I can simply stay there and have a WFH day. I am fortunate, in my current job, to have the privilege of deciding this on a day-by-day basis. Many, I know, would love to work from home but do not have the option, but I prefer the office. The smell of black coffee, seagulls yakking on the roof. Doors open and close as colleagues come and go, keyboards tap, and on and off there is distant hum of student voices emanating from a classroom downstairs. In the hive of activity, I hum too, and I definitely get my work done more efficiently.      

I’m interested to analyse this phenomenon through the lens of place attachment. There is a considerable body of research that investigates the way people feel about the spaces that they inhabit – that certain places become meaningful places to be in. Place attachment theorists explore how we can have relationships to places in much the same way that we have relationships to people – feeling a strong pull to return to the familiar, disliking change, and feeling ‘homesick’ for places where we have a strong emotional attachment. Of course, this is usually discussed in relation to the natural world, or to one’s childhood home, or ancestral lands… but why not of the office? Because the heart of place attachment is not really how we feel about places, but how places make us feel about ourselves.  

Either for good or for bad, in the office one inhabits a certain sense of self – maybe not a different self to the one that we are at home – but at work, different aspects of that self are valued differently and are allowed to come to the fore. Perhaps I feel this especially because I am a working mum – it can be a relief to leave the home each day and come to inhabit a space where I am valued for more than my ability to know whether or not it’s PE today, or if there’s milk in the fridge. In the office, I can dwell in a version of myself that I enjoy – one that is paid to think and to write and to teach, a part of the university hum.  

George Pitcher, in his recent article for Seen & Unseen, challenges managers to ask themselves why they are opposing more junior staff working from home. His discussion hints at this same phenomenon of places shaping identities, and Pitcher proposes that managers might resent junior staff working from home, at least in part, because they feel like their identity as a manager is compromised when they cannot sit in their glass-walled office, gazing out over the rows of worker bees, queen of all they survey. As Pitcher puts it, “…if staff aren’t in the office, then what’s the point of being a boss?” 

The Bible too engages with the interplay between one’s sense of self and one’s sense of place. In the Old Testament, before the birth of Jesus, prophets and hymn writers spoke longingly of their homelands, and especially of the temple where they gathered to be assured of their identity as the people of God. “How shall we sing the Lord’s song in strange land?” cries one hymnwriter, exiled far from home, while another writes of how he longs to dwell in the House of the Lord all the days of his life. With this sentiment I can empathise; just as I feel like more of a worker-bee when I am within the hive of the university, I feel I am much more of a Christian when belting out hymns among the Sunday throng than I am among my colleagues at a Monday morning meeting. 

And yet the Bible issues a challenge to me here. Because after the Old Testament comes the New, written after the life, death and resurrection of Jesus Christ, and largely after the destruction of the great “Second Temple” that Herod the Great had built in Jerusalem. With the temple gone, and the region subdued under Roman overlords, the New Testament writers make frequent allusions to Christian believers themselves being temples – temples of the Holy Spirit. This means that, as a Christian, I am urged to think of myself as a “place” of God’s presence in the world – and not just for my own sake but for the sake of others. I am not just part of the hum; I change the hum by being in it. The challenge is to gently bring the notes of my Sunday morning hymn to my Monday morning meeting.  

A long time ago, when I was a little Brownie-Guide, we used to sing a campfire song called “Bees of Paradise.” It was very short and simple:  

Bees of paradise, do the work of Jesus Christ 

Do the work that no one can.  

As a child, I never understood the words, although I enjoyed the pretty little tune that we sang it to, in the round. It comes back to me now, as I rummage in my bag for a key that I know I’m not going to find, and I return to my childhood habit of pondering the lyrics. 

I’ve only got 40 minutes now until my first meeting of the day, it’s time to give up and drive home. Turning resignedly back down the stairs, I resolve to be no less a worker-bee at home than I would have been at the office today. And no less of a Christian either.  

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