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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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Culture
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Work
7 min read

What my film about the prodigal son really means

Our relentless focus on productivity devalues the things that make us human

Emily is designer and animator at the Theos think tank.

An animated man runs through a jungle.
In Sync with the Sun.
Theos.

Watch now

In his 2021 book 4,000 weeks: Time Management for Mortals, Oliver Burkeman observes that an obsession with productivity doesn’t give us more control over our lives, ‘instead, life accelerates, and everyone grows more impatient. It’s somehow vastly more aggravating to wait two minutes for the microwave than two hours for the oven - or ten seconds for a slow-loading web page versus three days to receive the same information by post.’ 

With technologies like artificial intelligence rapidly accelerating our lives, this constant demand to squeeze more into our time is not only limited to the mundane tasks that we have to do and wish we didn’t. It seeps into what we want to do and indeed must do in order to flourish: creating art, spending time in community, and caring for others. The problem is that these things cannot be measured in productivity metrics because they inherently do not function in that way. How do you measure how ‘productive’ a conversation is? Or a work of art? Artists such as Vincent Van Gogh or Emily Dickinson didn’t see their influence in their own lifetime. 

The more we measure our lives in productivity metrics, the more we devalue the things that make us human, ultimately making our lives and the world around us increasingly artificial. This is the basis of my recent film, In Sync with the Sun, which is a short animation about the rhythms of activity and rest that are written into our world, and what happens when an obsession with productivity takes over.  

I wrote the initial script for the film after a period of burnout. I was fully in the “make the most of every second” mindset, which left me feeling exhausted and confused about where my value resides. In response, I began researching the sleep-cycles of various animals and I was liberated by surprising details such as the fact that lions, which we see as mighty and majestic animals, sleep for around 21 hours a day. Even creatures like jellyfish, which don’t even have brains as far as we know, still have cycles of rest. Every living thing thrives in these rhythms of activity and rest, even down to plants and minuscule organisms. Our whole world is built on this pattern, in sync with the sun. Yet for us humans, our rhythms have been broken by technology, leaving us confused about our limitations and what we should do with our short lives.  

The film begins in nature, deep in the jungle where some leopards are sleeping. But the tranquility is abruptly interrupted by the voice-over declaring, “the war against sleep began when artificial broke into the night.” Brilliant white light breaks up the deep blues and purples on screen, until the screen is filled with blinding white. I wanted it to feel like that moment you peer at your phone in the middle of the night - the pain of your pupils trying to adjust. If you think about it, for 99.9 per cent of human history, our eyes would have never had to do that - until now.  

Artificial light wasn’t powerful enough to change that. Instead, it’s given us an unquenchable guilt about how we use our time. 

With his invention of the light bulb, Thomas Edison was determined to banish the night, and the limitations it enforced on us. Edison was known for being fiercely obsessed with productivity and, as a result, was an anti-sleep warrior who believed,

“There is really no reason why men should go to bed at all.”

As someone living a century on, I find it baffling to imagine that humans should eradicate sleep entirely. Perhaps because just 100 years later we are seeing the results that sleep-loss and over-working can have on our physical health and wellbeing. Maybe we cannot supersede nature after all, since we are an embedded part of it. It seems that “Sabbath" rest is written into our world and into our humanity. Artificial light wasn’t powerful enough to change that. Instead, it’s given us an unquenchable guilt about how we use our time. Now we decide when the day ends, so whoever can rest the least wins. 

The battle is still raging; incandescent bulbs only set aflame that root desire to be increasingly productive. The hamster wheel is spinning uncontrollably, and we must keep up. So, what do we do? The attempt to remove the limitations outside of us has revealed that they are in fact inside of us too. Therefore, the only way to keep up is to remove the human from the hamster wheel altogether. The failure of artificial light leads to the birth of artificial minds.  

 As a creative, this is what frustrates me most about artificial intelligence; that it is mostly being driven by this quest to bring everything under the reign of productivity. It goes without saying that this is greatly needed in some areas of society. Just like artificial light, it can and will do a lot of good in the world. However, when the obsession with productivity is prioritised over human flourishing, that’s when we know there is a big problem with how we view our lives.  

Thinking back to the examples of Van Gogh and Emily Dickinson; what is lost when we don’t allow space for artists, carers, mothers, or any skilled role that requires an element of patience? For me personally, I can’t force creative inspiration, instead it comes at me, often at times when I’m not looking for it. Similarly, sometimes that inspiration leads directly to an instant idea, but most often it’s a vague idea I jot down to which later life experiences and opportunities then build onto, forming it into something bigger and more in-depth. This could be compared to a role or situation that requires relationship building. Sometimes there are moments of instant bonding and “productive” progress in relationships, but it’s often more complex where external experiences or changes, which are outside of our control, may unexpectedly deepen understanding between people after long periods of frustration. 

In my animation, I used the metaphor of a butterfly to illustrate this sentiment. After the character realises he is not made for a life of relentless productivity, he steps out of the black and white skyscraper into the lush wilderness. A butterfly lands on his productivity badge and the voice over says, “You’re not a machine.” I imagine the Creator saying this to the loved creation. Creatures like butterflies seem completely unproductive to our human standards. They take weeks to form in the chrysalis and exist in the world for less time than that. Yet they are a source of wonder and beauty for anyone who has the privilege of seeing one up close. A reminder that nature is not in a rush. Where AI is concerned, however, speed and profit are the focus of desire. But looking at the world around us - that we are a part of - it’s clear that not everything can or should be valued by these limiting metrics alone. 

The overarching narrative of In Sync with the Sun is loosely inspired by the biblical story of the prodigal son. The main character has travelled far away from his home in pursuit of success, and he eventually realises that this master does not love him. At the end he comes home again, finding connection in community and in the good rhythm of productivity and rest that he came from. I wanted the film to address the issues that an unhealthy obsession with productivity can cause, and instead evoke a desire to accept and live more in sync with the boundaries and rhythms that are embedded in the natural world we are a part of.  

The film ends with the line, “The only thing that can stay awake is not awake at all.” In the midst of the changing world of AI, humans might be tempted to measure our productivity levels in comparison to these machines. However, technologies always raise the productivity bar higher and higher, and one day we need to accept that we simply aren’t going to be able to reach it. We don’t sit apart from nature like technology does, so let’s stop resenting that, and instead celebrate it. To quote Oliver Burkeman again,  

“the more you confront the facts of finitude instead - and work with them, rather than against them - the more productive, meaningful and joyful life becomes.” 

Support Seen & Unseen

Since Spring 2023, our readers have enjoyed over 1,500 articles. All for free. 
This is made possible through the generosity of our amazing community of supporters.

If you enjoy Seen & Unseen, would you consider making a gift towards our work?
 
Do so by joining Behind The Seen. Alongside other benefits, you’ll receive an extra fortnightly email from me sharing my reading and reflections on the ideas that are shaping our times.

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