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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
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5 min read

Waiting for George: why I am yearning for an ending in Game of Thrones

Why does it matter so much that the series is unfinished?

James is a writer of sit coms for TV and radio.

Two people sit at a table strewen with old books lit by candle light.
Looking for the next chapter.
HBO.

Should you start something if you can’t be sure it’s going to finish? More specifically, should I read A Dance with Dragons by George RR Martin? It’s book five in the Game of Thrones series. The author is 76. Fans have been waiting fourteen years for book six, The Winds of Winter. And many are doubting the book will ever arrive, let alone book seven, A Dream of Spring. If current trends continue, HS2 will be completed faster than the Game of Thrones book series. 

There are plenty of other reasons not to read A Dance with Dragons. I’ve seen the adaptation for HBO which hit our screens in 2011. The plots have been already spoiled. I already know what’s going to happen. 

Yet over the last couple of years, I’ve read the first four books in the series and enjoyed them. A Storm of Swords, the third book in the series, was stunning, even though the plot had been thoroughly spoiled. I already knew about the Red Wedding, and the fate of King Joffrey and what happened to Jamie Lannister’s hand. Nonetheless, A Storm of Swords was enthralling and relentless. Just when I thought my jaw could not drop any further, it would drop again. The fact that A Dance with Dragons has already been on TV is not a consideration. 

A stronger reason against reading A Dance with Dragons is this: book four in the series, A Feast for Crows is, frankly, for the birds. Following on from the scintillating Storm of Swords, George RR Martin decided to focus on all of the least interesting characters who wander around Westeros desperately seeking a plot. But A Dance with Dragons, I’m told, returns to the best characters, like Tyrion Lannister, Varys and John Snow. What’s not to like? 

Here’s what: I end up being captivated by the world of Westeros all over again and left in the lurch. It could happen. In fact, I would expect it to happen. I might find myself primed and ready for the sixth book in the series, The Winds of Winter, which may never come. It’s been fourteen years. Say it comes next year. Book seven may takes another five. He’ll be 82. He might not make it. Heck, I’ll be 56. I might not make it! 

George RR Martin is aware of this fan fury. He often refers to it in interviews or on his blog. In 2019 he wrote: 

“…if I don’t have THE WINDS OF WINTER in hand when I arrive in New Zealand for worldcon, you have here my formal written permission to imprison me in a small cabin on White Island, overlooking that lake of sulfuric acid, until I’m done.” 

The lake has been prepared, George. You’ll need to do better than ‘direwolves ate my homework.’ Martin explains he’s been working on related projects which now includes opening a pub called Milk of the Poppy. He doesn’t work the bar or change the barrels but fans now suspect that Martin is avoiding finishing the books on purpose. Why? 

Some say he knows he can’t finish the book because he’s an existentialist. After all, he wrote the books to show the sprawling messiness of the real world by using the anarchy of the Seven Kingdoms of Westeros. For George RR Martin, life is not full of heroes and villains like Gandalf and Saruman. He has a point. The most interesting characters in Lord of the Rings are Gollum and Boromir. 

Game of Thrones is an intentionally complex mess of compromise and chaos. There are no good guys, except John Snow. And there are no real villains except King Joffrey. And Cersei, Melisandre, Little Finger, The Mountain and, wow, that’s already quite a long list, isn’t it? 

The moral complexity was highlighted by the end of the TV series, which had to invent its own finale, as none was provided by the author. Many fans were appalled at the last series, outraged that the resolution was jarringly neat. Others were just happy there was an ending – which made that first group of fans even angrier. 

Here’s the real question. Why does it matter? So the series is unfinished. Big deal. 

You know what else is unfinished? Your life. And the lives of everyone around us. We live with not knowing how our story will end. We are finite beings. We are born. We live with the limitations. 

And then the biggest limitation of all hits us: death. So why not just enjoy the moment? If we enjoyed the characters and the stories, what’s the problem? Storm of Swords was incredible. Maybe A Dance with Dragons will be brilliant too. Can’t I just enjoy that and move on? 

No. We yearn for an ending. Life is not one perpetual cliffhanger. Let us not confuse limited knowledge with suspense. The fact is that we are eternal beings. The Lord has set eternity in our hearts. Even the characters of Westeros believe in something beyond themselves – although all the talk of the old gods and the new is entirely unconvincing. I don’t really believe they believe in those gods. 

But they do believe in something outside of themselves. In Game of Thrones, a few good men are prepared to die with honour. Some awful men die in agony. Others are wrestling with doing the right thing when all around seem not to care. Some characters are yearning for home; some vindication; others love and acceptance. 

Our desire for an ending merely matches the desires of the characters that George RR Martin has created. They are so lifelike precisely because they believe in providence, fate, destiny or some divine standard to which they are held to account. In that, George RR Martin has made characters in God’s image, not his own.  

What I do know is this: my favourite character in Game of Thrones, Tyrion Lannister, would read A Dance with Dragons, curious to know what happens next. And that’s good enough for me. I’m in. 

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