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
Assisted dying
Comment
Mental Health
6 min read

No, it is not your life to dispose of

What could not be said about the assisted dying debate

Steve is the former vicar of St Matthew's Oxford.

Empty bus seats are lit in dark neon colours.
Vy Tran on Unsplash.

It is 1979.  I am aged 23 and have been in great mental and emotional anguish and pain for years. I am on a pointless journey, on Greyhound busses, from the East coast of America to the West, and am presently sitting in a parked bus just outside a city in Arizona; the powerful engine idles as we wait for departure time, giving a gentle to-and-fro rocking motion to the bus.  I have not eaten for days, am unspeakably tired of my life, and have made a written list of possible ways to end it.   

But not on that list is one possibility I have not previously considered, but which is now before me.  As I look out to my right, up into the Arizona desert hills, I realise that here is an option which perfectly fits with my desire, not so much to do away violently with myself, as simply to drift into a passive oblivion; I realise  that I could simply rise from my seat right now, get off the bus, stumble off into the desert hills, lie down, and wait to die.  I need not shoot or poison myself after all.  I know I can do this, and fairly easily; to die will take time, but no matter.  No-one knows where I am, no-one will know I am missing, no-one will come looking for me, and probably no-one will find me.  It is suddenly an immensely attractive prospect, and I am seconds away from rising up from my seat...  

There is one thing, one thing only, that makes me hesitate; it is what other people would call ‘a religious belief’, but to me it is simply a truth. 

It is this; I am absolutely sure that there is a God.  And suddenly there is something grimly, darkly humorous even, in what I thus believe will follow my death; I will find myself, not in peaceful oblivion, but in the presence of God. I will, as they say, ‘meet my Maker’.  And what then will I say to God?  I will say: “Apologies: I could not go on, there was no other way out for me”.   But what, I reason, if God were then to say: “You are wrong. There was a way forward. Look: you could have stayed on the bus, and had you done so, let me show you how your earthly future would have panned out…”   And I will listen, and I will watch, as the film rolls on, showing me an alternative future.   But of course, by then it would be too late… 

And suddenly, sitting on that bus, in a moment of cold clarity, I realise, with a kind of desolate logic, how I am caught.  In a very real sense, my belief in God my Creator means that I am not in fact ‘free’ to dispose of myself; more, that what I refer to so glibly as ‘myself’ is not in fact MY self.  The bus ticket in my pocket may be ‘my’ ticket, my rucksack ‘my’ rucksack, but my life is not after all my possession, mine to dispose of; it is a loan, a gift, from a Giver, to Whom I am responsible, answerable… 

I remain in my seat.  The bus continues its gentle rocking motion a while longer.  The driver gives his familiar 1970s Greyhound driver’s recitation, the various admonitions and prohibitions I have heard so many times as I have crossed America, I could give the speech myself (ending with the words ‘and no marijuana’, which always raises a smile) – and the bus pulls out onto the freeway.  I look back over my shoulder at the desert hills as they recede, and feel I am leaving more than the desert hills behind; I am still in deep pain, but know I have left a possibility behind me, for good.  Months later I will reflect on this moment and realise with a smile that the name of the city where I had put death behind me by not rising was Phoenix. 

And so my journey has continued – on, in due time, to a return to England, to a measure of healing, to getting ordained as an Anglican priest, to thirty-four years of Church ministry, to marriage to a very remarkable woman, to fatherhood of two children - and, at some future moment, to my own death: all in God’s time. 

How shoddy, shrunken and lonely, is our much vaunted and trumpeted vision of the autonomous individual. 

The word ‘God’ was probably used very little, if at all, in the MPs debate on assisted suicide - and this debate has really been about assisted suicide, not ‘assisted dying’, given that people will be given drugs to self-administer. Even the Christian MPs who spoke, did not mention God, as they knew what could be said, and what could not, in order for them to be heard at all.  The public arguments for, and against, the legalisation of assisted suicide have almost without exception had to be premised on one agreed assumption, apparently the only one now permissible in a post-Christian, liberal humanist, agnostic/atheist society: the assumption that my life is mine.  The arguments used for assisted suicide resolve down to: “It is my life: I should be allowed to decide when to end it”.  Most of the arguments used against resolve down to: “Yes, of course, granted, agreed, it is your life: but there may be unintended consequences for others in allowing you to end it, others may feel obliged to end their lives”, etc.   At no point could anyone say, as I so passionately would claim: “No, it is not your life to dispose of”; there is now, it seems, no public place for the apostle Paul’s blunt statement in his letter to the Church in Corinth: ‘You are not your own.’ 

Yet this is now one of the most fundamental beliefs of ‘my’ life: and I have found it to be totally liberating and beautiful.  I think of those glorious sculptures on the outer walls of Chartres Cathedral, including the representation of the creation of Adam, presented as emerging from the very mind of God.  I think of the glory of man and woman made in God’s image as stewards of creation.  I think of the extraordinary wonder of the Incarnation, of God embodied in Christ.  I think of the sufferings of Christ on the cross; and I think, yes, of course I think, of the sufferings of my fellow men and women and children, and of my own sufferings, and of the call to me to shoulder the burden, both of living, and of dying, in God’s time.   

And, alas, I think I also see something of how shrivelled, how wizened in comparison, how shoddy, shrunken and lonely, is our much vaunted and trumpeted vision of the autonomous individual – “my life, my rights, my body, my choice” - in the dominant contemporary Western mindset, eating away steadily like a corrosive acid any wider conception of community and the social institutions that enshrine it, and any sense of a deeper accountability to God. 

Where will the current assisted suicide decision ultimately lead?  What is the destination?  It is difficult to predict, but the signs from other countries who have gone down this road are not good.   

But what do I know?  Do I have answers to all the questions around assisted suicide?  I confess I do not. But one thing has become clearer to me: I am on a very different journey from the one my nation is travelling now.