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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Review
Belief
Books
Culture
4 min read

Could Lamorna Ash become a Christian in a year?

Moving, funny and beautifully written, this young writer’s quest for faith has lessons for all of us.
A woman stares away from the camera
Lamorna Ash.

When two of Lamorna Ash’s university friends decided to leave behind their lives as standup comedians and train to become priests, Ash was fascinated. She interviewed them and wrote an essay about it for the Guardian but, by the time her piece came out, knew she was “not finished with Christianity.” 

“Perhaps it was naive not to have anticipated how spending my days alongside two fresh converts… would have some cumulative effect on me,” she writes. “Through these encounters, it was as if the very corner of the sky had been pulled back. I couldn’t see what was going on behind it, but I understood it was there for them… they taught me how to believe in the belief of others… their stories became the starting point.”  

And so Ash bought a second hand Toyota Corolla, stocked the glove box with CDs and set off on a Christian road-trip around the country that started with a Christianity Explored course and ended with a series of meetings with people who were consciously ‘dechurching’, taking in Catholics, Orthodox Christians, Quakers, Anabaptists and a YWAM community along the way. She books in ‘desert times’ on Iona; in Walsingham; at a silent Jesuit retreat. She walks, and talks, and tries to pray and thinks. Throughout her travels, Ash carried a ‘jokey’ question in the back of her mind to frame her research: could she become a Christian in a year? 

The result of her quest is this book: tender, fascinating, moving, funny and beautifully written. Throughout my reading of Don’t Forget We’re Here Forever I kept thinking of people I would like to give it to, Christian and non-Christian alike. Ash has achieved a remarkable feat: to make faith and its pursuit a compelling subject regardless of whether you’re a believer or not.  

Primarily, this is because she has not - joke question aside - set out with an agenda, other than to more fully understand what makes believers tick (and, she admits, because it is something to write about). Though she is scathing about Rico Tice, whom she finds performative and evasive, and finds the dogma of the Christianity Explored course too rigid and inflexible for her liking, she is sympathetic towards and interested in her fellow Christianity Explored small group companions - and is self-aware enough to admit that during this time she “played the worst version of myself: hackles raised, on alert, unable to let a conversation pass without some interjection”. Though she finds the intensity of Youth With A Mission’s community - along with the fact that many of the staff are married to each other - a bit much, she is individually drawn to some of the people who work there, and reflective about what and why they’re doing. As someone who has grown up with faith, it is fascinating to see what we often take for granted held up to scrutiny by someone who is not there to be deliberately combative, but to try and understand.  

“I am still too close to it to tell you definitively all the ways the encounters… changed me,” Ash writes. “What it felt like at the time, though, was that each conversation was leading me to places in my own mind I had never visited before.”  

There are elements of Ash’s book I am intrigued by, but sceptical of: her suggestion, for example, that the Bible should not stop where it does, but might be continually added to, “like a divine Wikipedia, updated in perpetuity.” Her theological understanding is not, perhaps understandably, advanced. She is a self-confessed product of her era: young, progressive, queer, and her readings of and understandings of other people are framed through that lens.  

But despite its failings, Don’t Forget We’re Here Forever remains compelling because of its curiosity - a curiosity that Ash wonders might be the place “where God exists”; its attempts, however stumbling, to understand faith rather than just dismiss it. It is an atheist Quaker who teaches Ash “how I might approach Christianity: it was supposed to be a challenge.” You will have to read it to learn where Ash herself ends up, but her book extends the challenge to those of us who might benefit from a similar scrutiny of what we believe - not to fall out of faith, but also to understand it, and God, more.

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