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.

Support Seen & Unseen

Since Spring 2023, our readers have enjoyed over 1,500 articles. All for free. 
This is made possible through the generosity of our amazing community of supporters.

If you enjoy Seen & Unseen, would you consider making a gift towards our work?
 
Do so by joining Behind The Seen. Alongside other benefits, you’ll receive an extra fortnightly email from me sharing my reading and reflections on the ideas that are shaping our times.

Graham Tomlin
Editor-in-Chief

Article
Comment
Grenfell disaster
Trauma
6 min read

Grenfell: how long should we remember?

There are good and bad ways of remembering.

Graham is the Director of the Centre for Cultural Witness and a former Bishop of Kensington.

A white building wrap around a tower is topped by a green heart and the slogan: Grenfell Always In Our Heaets.
Grenfell Tower, Summer 2024.
Rc1959, CC0, via Wikimedia Commons.

For nearly eight years now, Grenfell Tower has remained standing as a reminder of one of the most painful days in recent British history. The news that the government intends to dismantle the remains of the Tower has split local opinion. Some of the bereaved and survivors suggest that the government has scarcely consulted them. For many, the building is a tomb, still containing the memory, if not the actual remains of their loved ones whose bodies could not be recovered. They understandably fear them being forgotten when the building no longer stands as a reminder. Last year I sat in on a gathering where bereaved families and survivors of the fire told their stories in the hearing of representatives of the companies who were responsible for the cladding which caused the fire to spread. The memories and emotions are still raw and unhealed.  

On the other hand, many local residents would like it taken away, as its constant, looming presence is a painful reminder of that dark night. They also see the logic in bringing down a fatally damaged and increasingly dangerous structure that costs the taxpayer millions each year to keep from collapsing under its own weight.  

The key issue at the heart of this debate is how we remember - especially, how we remember pain. In the rhetoric around Grenfell, as with many other tragedies, we often hear calls to ‘always remember’ and that we must ‘never forget’ the wrongs done which caused the deaths of those 72 people. The Grenfell Memorial Commission, which was charged with thinking about what memorial should stand on the site of the building in future, claimed as its aim to “make sure the Grenfell tragedy can never be forgotten.” 

Such calls to ‘never forget’ are powerful. They seem a proper tribute to those who died, they ensure that those culpable are not let off too easily, and that justice is properly done. To blithely forget such horrendous evils seems an affront to justice, and a morally culpable act. 

Yet must we always remember the hurts and pains of the past? Can we imagine a future where such memories fade into the distance and no longer cast their painful shadow over our lives?  

Whether and when Grenfell Tower comes down, is yet to be determined. Yet only when we keep in mind the destination of the journey of healing can we make good decisions...

Theologian Miroslav Volf asks all these questions in his book The End of Memory. He describes good and bad ways of remembering. We can remember to cherish the dead, to learn lessons for the future, to ensure justice is done. Yet we can also remember to nurse grievances, to cling onto grudges, to imagine horrible pain inflicted on those who wronged us. Memories of wrongs done to us can imprison and define us purely as victims, never in control, always subject to the actions for others, with no agency of our own. 

Volf’s Christian faith tells him that the human race is beckoned towards a new world, in the full presence of God, of what he calls ‘final reconciliation’. It is a place where we will be captivated by a vision of the beauty and goodness of God, a vision that we only dimly glimpse in this world. He asks the question: in such a world, will we remember all the wrongs done to us? Can we imagine still clinging onto the memory of the sins and crimes that others inflicted on us? Even if that were in principle possible, would we remember all the harm done to us? And the harm we did to others? If not, which sins would we remember? Which ones would we forget? Would not such memories blight the joy that such a world would surely offer? 

Reflecting on his own youthful and painful memories of interrogation in communist Yugoslavia, and other tragedies such as the 9/11attacks, Volf imagines getting to the point where we don't forget the terrible things that others have done to us, but when we actively don't remember them. They still occupy a place in our minds but are instead relegated to a corner of our consciousness, under our control, no longer rearing their ugly and painful heads when triggered by other events. Such an ability not to remember, he suggests, is a good thing: 

 "Non-remembrance of wrongs suffered is the gift God will give to those who have been wronged."  

At the same time, Volf is careful not to imagine getting to this point too easily. Wrongdoers cannot for a moment insist that those they have wronged forget their misdeeds. Such non-remembrance can only happen when truth has been told, sins punished, and justice done. Yet when all that has taken place, that ‘final reconciliation’, Volf imagines, might even embrace the unimaginable - an ultimate reconciliation between the wronged and the wrongdoers.  

Is it possible to imagine children whose parents were killed because of the negligence and culpable cheating of contractors who knowingly put unsafe cladding on Grenfell Tower, ever being reconciled to and even embracing the perpetrators? Volf suggests we can, while recognising that this can only happen when the crime has been identified, fully recognised, repented of profoundly, forgiveness offered and accepted and the appropriate penalty paid.  

While such a process remains incomplete, the obligation to remember remains, and reconciliation cannot yet take place. But true healing from such hurts is not to be forever dominated by them, defined by them, or to live in constant enmity and resentment because of them. It is, instead, to gain the strength and ability not to remember them, not to be defined by them, and even - possibly, perhaps - to find reconciliation with their perpetrators. 

The Grenfell Public Inquiry that reported last year was an important step for the bereaved and survivors. It was not the end of the journey. Far from it. The process of enacting justice through prosecution of the guilty lies ahead. But as an exercise in truth-telling, in giving perpetrators the opportunity to own up and confess their guilt, in a truthful recognition of what went wrong, it was a vital step towards the possibility of reaching that stage when the memory of Grenfell no longer defines its victims. It opens up the possibility at some point in the future, where they might be in control of their memories rather than their memories controlling them. 

The Danish Christian philosopher Søren Kierkegaard once wrote that we humans need to learn both “the art of forgetting” and “the art of remembering”. To know when and how to do one and when to do the other is the gift of God and an art of true wisdom. 

Whether and when Grenfell Tower comes down, is yet to be determined. Yet only when we keep in mind the destination of the journey of healing can we make good decisions about such fraught and emotionally charged issues. The Tower cannot remain as it is - everyone acknowledges that . Yet it's hard for many to think about its disappearance without knowing what will replace it. Which is why plans to demolish the Tower must go hand in hand with the plans for the lasting Memorial that will stand on the site. Yet that can only happen if it serves the goal of being able truthfully to remember no longer the pain and injustice of the past.  

Join with us - Behind the Seen

Seen & Unseen is free for everyone and is made possible through the generosity of our amazing community of supporters.

If you’re enjoying Seen & Unseen, would you consider making a gift towards our work?

Alongside other benefits (book discounts etc.), you’ll receive an extra fortnightly email from me sharing what I’m reading and my reflections on the ideas that are shaping our times.

Graham Tomlin

Editor-in-Chief