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
Biology
Comment
Wildness
5 min read

There’s a sting in the tail if we construct lessons from nature

Don’t be like the bees

Juila is a writer and social justice advocate. 

A bee keeper hold honeycomb to the light
HiveBoxx on Unsplash.

‘Be like the bees’ we hear not infrequently. These furry hive dwellers have been coopted by many, from socialists to capitalists, to put a point across. One party draws on their social structure as an inspiration, another their worker bee ethic. They are indeed an example to us. And yet at the same time, bee communities do things that we would find reprehensible in fellow humans. Male bees are expelled from the hive when they are no longer considered reproductively useful. The bees we see out and about this summer are often the oldest, sent to do the dangerous foraging work because they are considered the most expendable. This was a jarring discovery for me, reading it in Katherine May’s timely book, Wintering, during the first COVID-19 lockdown. I was one of the millions shielding and being protected by the ways that society shifted to serve the most vulnerable to the virus; bees, I had just learned, would not behave like this. There are some limits, it seems, to the lessons we construct from nature.  

For we do love to construct them. Spend a moment on LinkedIn or Substack, and there are a multitude of articles drawing lessons from the world around us and the creatures we share it with.  

This impulse is not new; throughout history, people and communities have done this. People’s relationship with nature is not static or homogenous. The wilderness has been variously a place of fear to be avoided, of growing wonder as described by the Romantic Poets, a site of knowledge neglected by those in power but maintained by others, often women and indigenous communities.  

What strikes me about the current trend is that it seems to push to an extreme of unquestioning veneration: nature is perfect and our whole teacher. There are posts about perfect harmony we should emulate, or a call to copy an endless adaptability. These are the things that we might long for – but do not seem to be borne out in ecosystems where sea urchins demolish kelp forests, and the climate crisis reveals the limits of species to adjust. We are being called to see what we want (or feel we need) rather than what actually exists in the world around us.  

This instinct to carve lessons from creation extends beyond the natural world to the work of human hands. The Japanese art of kintsugi, repairing broken pottery with gold, has become increasingly prevalent as a metaphor for healing; a beautiful idea but one that risks being stripped of its culture, and that has both limitations and dangers. In Sarah Perry’s novel, The Essex Serpent, Cora’s husband Michael masks his abuse by speaking in a romantic metaphor of his intention to break her down and mend her with gold, like the Japanese art in their hallway. But Cora is not a vase; she is woman. Michael’s breaking harms her. She only begins to repair after he is gone; it is messy, some parts seem irrevocably changed. I think of my own losses, and how healing is indeed available, but rarely as straightforward as putting the same pieces back together. To think it is so can hinder our restoration, and miss out on the transformation that may be possible. As the journalist Poorna Bell wrote after her husband’s death by suicide: “I was in some ways sadder, wiser, but also my existence was much bigger, more honest.” 

We have a great capacity to learn – and we need it to survive. As writer Andy Crouch put it in his book, Culture Making: “a human baby is the strangest and most wonderful creature this world can offer. No other mammal emerges so helpless from the womb, utterly unable to cope with the opportunity and adversity of nature. Yet no other creature holds such limitless possibility… We are hard-wired for nothing but learning. All we begin with are possibilities.” 

This ability to grow and understand and change is essential if we are to navigate the world. And in our encounters with this place, with brokenness and confusion, the instinct to make meaning, to tidy, to be able to point to something and say 'this is how we should be’ is a form of comfort. Maybe even control it. We are grappling with not just how to understand the world, but how to be in it.  

If we are always looking for the lesson, we devalue nature by prizing it just for what it can give us. 

Creation and creativity have much to teach us – they’re a testament to and the fruit of the imagination of God. But to prize them just for their lessons seems to fall into another form of extraction and to miss out on something else, something that may be a greater gift in this messy world: wonder.  

Bees moving from flower to flower are not setting out on their mission with a side hustle of education for the human race. They are being their full bee selves. Nectar is necessary; this is how it is collected. Bees share knowledge about the good plants via a ‘waggle dance’. This is how the colony persists. It is not for my benefit (though it may encourage me to a moment of playfulness).  

Writing this on my balcony, I pause when I see dozens of birds circling one thermal; a moving column of gulls and red kites that goes up and up and up. I could strive for a teachable moment (maybe something about co-existence?) but it feels not just unnecessary, but an interruption. In that moment, I was a human being in awe of birds riding the warm air; that feels like something full of beauty in itself. I worry that if we are always looking for the lesson, we devalue nature by prizing it just for what it can give us. And we miss out on the opportunities to marvel at creation itself.  

And, in calling each other to be like other creatures, we accidentally dehumanise other people and ourselves. In the face of conflict, polarisation and disconnection, to contend for each other’s humanity feels vital. And to recognise our own humanness is to acknowledge our limitations. There are parts of nature currently beyond our comprehension. Birdsong holds complexity heard by the intended audience but we can only guess at its meaning. There is something to accepting the edges of our own understanding. Sometimes we touch on truths that seem to contradict or be in tension. Perhaps they are layers that we cannot intellectually fit together but that build up a fuller, richer story that resonates in our souls. Glimpsing something of the multifaceted wisdom and wonder of God himself – and that helps us to remember who we are. A particular type of creature: a human. 

So, I won’t be a bee. I’ll keep trying to learn to be what I am: a particular human in a bigger community, world and story. Now, I’m off to admire the goldfinches, glinting in the sunshine. 

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If you enjoy Seen & Unseen, would you consider making a gift towards our work?
 
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