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
Comment
Justice
Trauma
4 min read

Can life go on after wicked acts of violence?

We can fulfill the law in more ways that just the legal sense.

George is a visiting fellow at the London School of Economics and an Anglican priest.

A montage shows three people, an older man, a young man and young woman.
Ian Coates, Barnaby Webber and Grace O'Malley-Kumar.
Family handout.

It’s an all too human instinct to seek vengeance against psychopathic killers, especially those murderers of children and youngsters. If we’re honest, we can all feel a primal urge to “get our hands on them”, to inflict, in retribution, the pain, death and suffering that they delivered on their victims and their families. 

That must be why, shortly after his sentencing, the murderer of the three little girls at a dance class in Southport - Elsie Dot Stancombe, Alice da Silva Aguiar, Bebe King – was reported to have been beaten to a pulp by fellow prisoners. It went momentarily viral with the help of the likes of former support-actor Laurence Fox, who writes in short sentences because he thinks in them, claiming he’d heard it “on the grapevine”.  

The story was only slightly undermined by such giants of investigative reporting getting the jail where the convicted prisoner is incarcerated entirely wrong. 

It’s a kind of wishful thinking, if a herd can be said to think. It’s also why we have a rule of law in what we aspire to call a civilised country. It’s there to bring such perpetrators to justice, while ensuring that justice isn’t impaired by the wholly understandable desire of victims’ families to tear their killers to pieces and the knuckle-dragging, social-media lynch mob who think they know what justice looks like. 

Hard for anyone to know how to respond to this. It’s perhaps particularly challenging, for fear of being intrusive and trite, to see how a religious faith can respond. But I want to have a go. And to avoid those charges of hand-wringing solipsism, I won’t speak of hope and love and life in this context, which so often feels like throwing a handful of seeds into a raging storm.  

Rather, I think I want to ask what fulfilment of the law might look like. The full 240-page report into the killing In Nottingham in June 2023 by a paranoid schizophrenic of two 19-year-old students, Barnaby Webber and Grace O’Malley-Kumar, and separately a 65-year-old man, Ian Coates, has been published. Not unnaturally, the headline theme has been that the killer “got away with murder” through a series of chaotic failings by the NHS, in its discharges of its patient into the community, in its absent risk management and failures to medicate him adequately. 

Culpability for these crimes is a powerful driving force. But there’s something else going on here. After the report’s publication, the two young victims’ mothers, Sinead O’Malley-Kumar and Emma Webber, went on BBC Radio 4’s Woman’s Hour for an extended interview. And, yes, of course they share a campaigning spirit to change the health system so that this kind of tragedy is less likely to happen again. But Emma said that they’re “not witch-hunting with pitchforks” and Sinead observed with crystal clarity that “systems are made up of people”.  This was about human as well as systemic change. 

The go-to journalistic word here is “dignity” and, yes, these two mothers have it in bucket-loads. But, as I say, there’s something else. Struggling to identify it, I come up with the phrase that life goes on – and not in its platitudinous sense of bucking up and getting on with what’s left to us. There’s a feeling of continuation, not just of ending, dreadful as those endings are for families.  

Asked by interviewer Anita Rani (who, in passing, was first class) what sustained them, where their strength came from, Emma answered in a heartbeat “Barnaby”, adding quickly in a heartbreaking throwaway: “It’s that invisible umbilical cord.” Similarly, Sinead said she was strengthened on a “bad day” by the knowledge that she was “doing it for Grace.” 

They know, absolutely, that they can’t change what happened, but they’re there for each other. And not just these two mothers. Bereaved parents from Southport have been in touch, as they said, in “awful solidarity.” 

A solidarity unconfined to this dreadful cadre of the violently bereaved. When these two mothers visited Nottingham for a vigil for their lost children, they expected “maybe 50” to turn up. In the event, there were “thousands and thousands” in Market Square.  One of the two said simply: “There’s more good than bad out there.” Life goes on. Again, not in the sense of pulling your boots up and making the best of it, but in the sense of acknowledging that this is not all there is, that we’re working towards something infinitely better. 

I think that’s what fulfilling the law might mean. Not solely changes to human systems, but changes in humanity. And perhaps that makes some sense of the gospel line: “I’m come not to destroy the law, but to fulfil it.” Not just to fulfil prophecy; not just to improve legal processes, but to fulfil the immutable laws of humanity for which these two mothers – and so many others around them – work so tirelessly.  

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