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
Care
Comment
Easter
5 min read

I know who will be most affected by legalising assisted dying

Contemplating lent revives hard memories and raises fresh fears.

Ryan is an ordained Priest in the Church of England, currently serving in south London. 

A close up of a forehead bearing an ash cross marked on it.
Ahna Ziegler on Unsplash.

“What’s that - a face tattoo?” 

These were the words of one person as I walked past them on the streets on a recent Wednesday, with the ashes of last year’s burnt palm-branches placed across my forehead in the shape of the cross.  

The cross has been a symbol of hope for over two millennia; that even in the most painful of circumstances, darkness does not have the final say, including in death.  

As a society, we don’t really talk about death that much. Margot Robbie’s Barbie was the quintessential party-pooper when she pondered: 

 “do you guys ever think about dying?”. 

It’s no fun to dwell on death and dying, and for many of us, we put it off as long as we can. That all changed last year with the introduction of the assisted dying bill into the Houses of Parliament. Our national attention was, for a rare moment, captured by death.  

As a parish priest, I’ve seen the finality of burying someone into the ground. I’ve seen the sadness in the eyes of those trying to grieve. 

The words of Ash Wednesday, which remind us that we are ‘but dust, and to dust we shall return’ are echoed in the famous words that the priest recites in those last moments of burial, ‘ashes to ashes, dust to dust’. In that moment, amongst the bereaved, there is no escaping the inevitability of death. It is the ultimate statistic, 1 in 1 die. 

Whilst death is of course universal and will affect us all, the impact of this assisted dying bill could have consequences for some of the most vulnerable in society.  

As I reflect on my time as a Priest in East London, this is not abstract theory, but something I lived with each day. I served amongst a hugely diverse, vibrant, community in one of the poorest parts of the city. As I try to picture some the people I’ve walked alongside, I know it is these lives that will be most affected.  

One of the reasons I have concerns about the bill is the prospect of these people being coerced into ending their own lives prematurely, by a world that has already told them their lives are of little value. There are already huge disparities in access to the current provision of palliative care at the end of life, particularly amongst people of colour, the disabled and the poor.  

Of the 500,000 people who die each year, 100,000 do not access the care they need. This number is skewed towards ethnic minorities and those who come from poorer backgrounds.  

There is much confusion and misinformation about what end-of-life care even is. Research conducted by Marie Curie shows that 1 in 5 people from an ethnic minority background believe Palliative Care is actually Euthanasia.  

We only need to look at what has happened around the world when the ‘right to die’ becomes a duty to die. Even with the best of intentions, other jurisdictions show us that safeguards rapidly deteriorate and those who are already vulnerable become even more so.  

I worry that the way in which this bill is being handled - rushed through, little time being given to properly chew over the profound consequences it may have - reflects the wider way we view death. 

By trying to provide a ‘choice’ for a certain group of people, the consequence will be taking away real choice from those who already have little. 

Yet we know that for those who do access it, palliative care can be hugely effective in improving their quality of life, and for some, they can even outlive their prognosis. During Ash Wednesday’s service, I met an elderly gentleman who was diagnosed with stage four pancreatic cancer in 2019. He was told he had five months to live. He described every day of his six-year survival since as a ‘miracle’, his eyes filled with evident joy.  

Such a blessing stands in stark contrast to the lonely final days of my 96-year-old great grandmother. She was suddenly taken ill during the Covid-19 pandemic and was frantically rushed to a hospital. Amidst the chaos, exasperated by the restrictions against seeing family that were in place at the time, I distinctly remember confused conversations about placing her in a care home for her final days. It was clear she needed a lot of specialist attention, more than our family could provide ourselves.  As she was discharged to stay with our aunt, she never did reach that care home, as she died at home. She was buried in our local cemetery, with our family watching on Zoom.  

My final memory of my great-grandmother will be the FaceTime call we shared when she was taken to hospital, with the poor data connection and shaky picture. I am so grateful for the few family members who were able to be by her side when she died, but I’ve often wondered whether she fully received the care she actually needed during those final days, in the way she needed it.  

What my great-grandmother didn’t have a lot of at the end of her life was time.  

That’s also true for this bill. Concerns have been raised that only five hours of debate were given to this Bill in the chamber, comparatively short for a change in the law of this magnitude.  

I worry that the way in which this bill is being handled- rushed through, little time being given to properly chew over the profound consequences it may have- reflects the wider way we view death.  

Do we view death - and indeed the dying- as something to be shoved to one side, not spoken about in the hopes we can avoid its impact? Or do we view death as an important moment to review who and what matters most in life?  

Perhaps for some, the fact that Christians devote a period of 40 days to dwell on death may be one of the mysteries of faith. However, perhaps it’s not such a bad idea after all.  Death may bring with it fear, grief and pain and so we tend to avoid it. But do we risk missing out on much more? As we head into Easter, the cross still serves as a powerful reminder that, especially in death, Hope can be found, that Good has triumphed over evil, and Light shines even in the darkest of places.  

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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.
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