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
Care
Culture
Mental Health
3 min read

Separating mind and body still stigmatises mental health

Our minds and bodies are meant to be inseparable.

Rachael is an author and theology of mental health specialist. 

 

 

Two bird sit on wires facing in opposite directions.
Eduardo Soares on Unsplash.

I recently had a somewhat surreal experience whilst trying to get two consultants to agree to some treatment I needed to have.  

One was a cardiologist, the other a psychiatrist - both consultants, working in the same geographical area - and I found, to my surprise, that there was no recourse for my physical health records to be viewed by the psychiatrist and vice versa.  

And as I went through the process of trying to mediate between these two professionals, it made me reflect that whilst in theory there is agreement that our minds and our bodies are one and that they cannot be treated wholly separately, the reality is something rather different.  

Mental and physical health problems are, in fact, treated as entirely separate entities, with different trusts and funding models in place to deliver care and treatment for mental illness and physical illness.  

Now, there is probably a bureaucratic reason for this, but I believe it uncovers a perhaps unconscious belief that our minds and bodies are distant relatives at best, and not only that, but our mental health is still the poorer relation - best ignored unless it’s particularly bothersome.  

I think this separation sits at the heart of the stigma that mental health problems still face - a stigma that persists even in the mental health system. It has ancient roots. Go back to ancient Greece and its philosophers. They held to a  doctrine where the body and soul were completely separate - our bodies are simply houses for our souls. In a way, the stigma that exists about mental health is the inverse of this- that our minds are less important than our physical bodies and that caring for mental health always comes second to caring for physical health. 

Yet, also in those ancient times, the Bible's treatment of humanity shows that we are creations of mind, body, and soul—all equal, beloved, and cared for by God. In Mark’s gospel, we read that the command to love God and one another is multi-faceted: “Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength.’ The second is this: ‘Love your neighbour as yourself.’ There is no commandment greater than these.” To love one another, then, means we need to care for one another’s mental health as well as physical health and strength, as we love with our minds and bodies. 

In truth, we cannot care well for ourselves or one another without considering both our mental and physical health. To ignore the mental strain of physical illnesses like cancer, and ignore the physical pains that mental illnesses cause, such as their effects on digestion and blood pressure, is to ignore significant parts of people's suffering.  

In the Old Testament of the Bible there is the story of Elijah, one of the great prophets who flees from a murderous ruler and, whilst spiritually and physically exhausted, begs God for death. “I have had enough, LORD,” he said. “Take my life; I am no better than my ancestors.” 

These are words of desperation that echo those who struggle with their mental health, and God’s reply to Elijah’s pain is to meet him with an encounter with an angel who urges him to sleep and eat, comforting him with the words “the journey is too much for you”. There is no reprimand for Elijah’s suffering, simply comfort for a tortured mind and provision for an exhausted body. 

The answer, then, is to treat ourselves and others as the embodied creations we are, with mind and body inseparable and interconnected in ways that even science cannot quite explain or articulate.  

The answer is to trust in the embodied hope of Christ, who chose to save us through not only his bodily crucifixion and resurrection, but through experiencing the breadth and depth of human emotions so that we may never again feel alone in them. 

Both our bodies and our minds matter to God, and we need to see that reflected in society, where we care not just for single ailments, but the whole person. We need not just an awareness of our minds, but an understanding of what it means to be mentally healthy, as well as a recognition of the horrors of mental illness. Only then, I believe, can we see a society which cares and serves those most in need not simply as isolated symptoms, but as valuable creations.