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
Gaza
Middle East
5 min read

The human cost of the Israel-Gaza war

A veteran volunteer surgeon laments a well lived life.

Tim Goodacre is a reconstructive plastic surgeon, and volunteer at a hospital in Gaza.

A young doctor wearing scrubs smiles.
AbdulRahman at work.
Tim Goodacre.

The Israel-Gaza war rages on. Every few days a new tragedy hits our dulled senses. The West Bank and now Lebanon are getting dragged into the conflict. Palestinians and hostages continue to die, and hunger and disease threaten Gaza's displaced people as autumn and winter approach. 

Yet what is often lost is the human face of this conflict. This is the story of one such life. 

AbdulRahman was an intelligent, gentle and diligent young third year medical student in his early twenties, with judgement well beyond his peers. Towards the end of 2023, as the war spread more viciously towards southern Gaza, he was one a group of around 10 students who volunteered to join the team of health care workers at the European Gaza Hospital (EGH). I was volunteering there as a reconstructive plastic surgeon and and met him in the hospital.

Both medical schools in Gaza before the war began were in the north alongside their parent universities. They had been destroyed during the onslaught in the early months of fighting. In the southern town of Khan Younis, the EGH was the sole surviving operational facility to which the wounded could be transferred. It was overwhelmed by the vast numbers of families also taking refuge in what was deemed a safer space than most of the surrounding war zone.  

Many of the senior medical staff and surgeons had retreated to scattered parts of the strip, displaced frequently by the ever-moving conflict and driven by the need to support their families and stay together. ‘Live together-die together’ is an understandable feature in the horror show of war. Students, frequently left with no money or resources, started to volunteer to serve in hospitals in exchange for a little food and a sense of worth in the work they could offer. Any functioning hospital, if briefly ‘deconflicted’ so they could provide relatively safe care, found itself staffed by a disparate crew of local staff, displaced students, and an indeterminate number of more senior surgeons from both Gaza and humanitarian agencies. 

His desire to learn all that could be learnt, and to try to become the best surgeon possible, was palpable.

It was into this chaotic mix that young AbdulRahman walked having fled his family home in the east of Khan Younis in November 2023. A bright young man, with great aspirations to qualify as a surgeon and serve his community, he had spent the first six weeks of the war at home, unable to attend his medical school in Gaza City to the north, but working hard at his studies regardless, using every online and library resource available to him.  

At some point in late November, the battle zone moved south, and his family home was shelled along with many dwellings in the vicinity. Caught in crossfire, he sheltered in his neighbouring relative’s house after his parents and other close family had escaped to Rafah. 

Abdulrahman told me the dramatic story of his escape into the house in which he survived for a week alongside his relative’s family when I spoke to him in late January 2024. This young man not only survived an ordeal of indescribable fear and potential slaughter, but he was then arrested and interrogated in brutal fashion by IDF forces.  

On his release after a harrowing week, he made his way barefoot to the nearest hospital, which happened to be the EGH. In that place of safety, he was given food and water and after recuperation, volunteered to work alongside a reconstructive plastic and burns surgeon who had recently returned to Gaza after training in the UK. 

Although his family were still all alive in Rafah in displaced makeshift shelters, he opted to stay and throw his weight into whatever he could do to support the hospital whilst continuing to learn his profession as a doctor. Travelling occasionally at great personal risk to see and support his family, he devoted all his waking hours to surgical work in EGH operating theatres and wards. His excellent command of English made him immensely valuable to any visiting surgeons who managed to access Gaza during the war months. He was always cheerful, always willing to respond to requests for his time, however stressful the surrounding clamour from desperate patients and relatives might become.  

When his working day was done, in the middle of the night he would arrange for his fellow students to have informal teaching seminars from whoever he could cajole to deliver them, and would absorb knowledge and ideas about best practice like a sponge. His desire to learn all that could be learnt, and to try to become the best surgeon possible, was palpable.  

I had every intention of supporting this fine young man in achieving his professional aspirations by whatever means I could once a ceasefire arose and he could be brought safely to Europe to continue his training. 

In the last week of August, AbdulRahman was sheltering in a relative’s house in Khan Younis. In the small hours of the morning an Israeli attack was launched on the neighbourhood and the house took a direct hit. AbdulRahman was killed instantly. 

He knew, as does every Gazan in these troubled times, that nowhere was safe, and all lives in that tragic zone are at risk. His is a story of a life tragically cut short, of the randomness and destructiveness of war. His death strikes right at the heart of my hopes for the remnant of the fine young population of such a desperately sad nation state. He, and those like him, could have been at the heart of the re-building of Gaza, able to live in what now feels a far-off peace. I cannot translate this into anger, as AbdulRahman himself had a passionate concern for peace and reconciliation, and never once spoke to me in many conversations of support for Hamas, or of hatred for those who had destroyed his country.  

What can be done however, is to honour his life and commitment with similar tenacity in supporting the pursuit of peace, justice for his people, learning and education for the remnant of the nation, and reconstruction of a Palestine that can proudly and honourably reflect the finest values it possesses. AbdulRahman was a great Palestinian, and his all too short life was one which I want to celebrate as one of the finest I have seen in many students of the next generation of doctors. May he rest in peace, and may a lasting peace come quickly to Gaza, to all of Palestine and the whole of the Middle East.