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
Belief
Care
Creed
4 min read

Understand what we thirst for

Whether for water or meaning, it’s a primal force.

Helen is a registered nurse and freelance writer, writing for audiences ranging from the general public to practitioners and scientists.

A child wearing a wool hat holds a glass and drink water from it.
Johnny McClung on Unsplash

Quenching thirst is a global problem. It can also be profoundly personal, impaired by illness. For nurses, it can be ethically and emotionally difficult, when treating dying patients. But is there ultimate relief? 

Thirst is the subjective sensation of a desire to drink something that cannot be ignored. The world is thirsty; globally, 703 million people lack access to clean water. That’s 1 in 10 people on the planet. 

Thirst is a life-saving warning system that tells your body to seek satisfaction through swallowing fluid. It works in partnership with other body processes - such as changes in blood pressure, heart rate and kidney function - to restore fluid, and salt, levels back to where they belong. Failure of any part of this beautifully balanced system leads to dehydration (or water intoxication), and perhaps to seizures, swelling of the brain, kidney failure, shock, coma and even death. 

Sometimes it’s difficult to quench thirst, because of problems with supply. According to the World Health Organization, at least 1.7 billion people used a drinking water source contaminated with faeces in 2022. Sometimes in war, water is weaponised, with systematic destruction of water sources and pipes. Water laced with rat fur, arsenic and copper has meanwhile been reported in prisons across the USA.  

At other times, there may be “water everywhere, but not a drop to drink” because of individual problems with swallowing. As a nurse, some of my most heartbreaking moments have been when I have been unable to fulfil a need as basic as a patient’s thirst; when even thickened fluids have led to intense coughing and distress, and a realisation that I can only moisten mouths and give so-called “taste for pleasure”: very small amounts of a favourite liquid or taste using a soft toothbrush, or a circular brush gently sweeping around the mouth and lips to release some of the liquid - even, and especially, at the end of life when the patient is unconscious. 

Difficulties in drinking are common in dementia when fluid can seem foreign and swallowing a surprise to the system. It’s thought that over 50 per cent of people in care homes have an impaired ability to eat or drink safely; 30 to 60 per cent  of people who have had a stroke and 50 per cent of those living with Parkinson’s may struggle to swallow. 

Other conditions that may affect swallowing include multiple sclerosis, cerebral palsy, and head and neck cancers. Diabetes is characterised by a raging thirst owing to problems with insulin (diabetes mellitus) or an imbalance in antidiuretic hormone levels (diabetes insipidus). In intensive care, patients are predisposed to thirst through mechanical ventilation, receiving nothing by mouth, and as a side effect of some medications. But thirst is a “neglected area” in healthcare, writes palliative care researcher Dr Maria Friedrichsen.  

“Knowledge of thirst and thirst relief are not expressed, seldom discussed, there are no policy documents nor is thirst documented in the patient’s record. There is a need for nurses to take the lead in changing nursing practice regarding thirst.” 

Is there another thirst that is also being missed in nursing, and in life in general – a spiritual thirst, beyond the physical desire to drink? In his book, Living in Wonder, writer Rod Dreher argues that humans are made to be spiritual, and that a critical sixth sense has been lost in a “society so hooked on science and reason”. We humans crave love in our deepest selves; we have an insatiable thirst for everything which lies within – and beyond – ourselves. Auschwitz survivor Viktor Frankl, who was later appointed professor of psychiatry at the University of Vienna, became convinced that human beings have a basic “will for meaning.” “The striving to find a meaning in one’s life,” he wrote, “is the primary motivational force in man.”  

In the harsh sun of a Middle East day, an ancient story of a man and a woman encountering each other at a water well illustrates this dual thirst for water and meaning. The man, Jesus, thankful for a drink of water given to him at the well by an outcast Samaritan woman, said that “Everyone who drinks this water will be thirsty again, but whoever drinks the water I give them will never thirst. Indeed, the water I give them will become in them a spring of water welling up to eternal life.” In that midday sun, such imagery made a powerful statement.  

Being mindful of spiritual thirst when drinking water is something also captured in a Ghanaian proverb and pictured perfectly in the many birds that drink by gravity, so tipping their heads back when they swallow.  

“Even the chicken, when it drinks, 

Lifts its head to heaven to thank God for the water”. 

Unsatisfied thirst is part of the human condition, we long for something more; it’s living proof of our immortality, says French poet Charles Baudelaire. Despite his Olympic success, athlete Adam Peaty said that society didn’t have the answers he was seeking, and that a gold medal was the coldest thing to wear. He “discovered something that was missing” when attending church for the first time, and now has a cross with the words “Into the Light” tattooed across his abdomen, symbolizing his spiritual awakening. We are more than mechanical machines with physical needs. We are rather gardens to tend in a dry and thirsty land, with souls in need of intensive care.