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.

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.

Graham Tomlin
Editor-in-Chief

Article
Comment
Economics
Sustainability
4 min read

Black Friday: don’t shop, try stewarding instead

We're so fallible to consumer culture. Here's how to counter it.

Rosie studies theology in Oxford and is currently training to be a vicar.

A phone screen is held up, showing a shopping page, behind a window displays a Black Friday Sale banner.
CardMapr.nl on Unsplash.

Have you noticed how many times in the last 24 hours you’ve been targeted or tempted by a Black Friday marketing campaign?  

It’s estimated that we can see anywhere from 50 to 400 adverts per day - on TV, billboards, online, and, more than ever, through social media. I’ve never felt more seen and known by the Instagram algorithm, and many of us have experienced items popping up on our feeds which we were talking about with friends only hours before. Is it possible to resist such incessant and elaborate marketing schemes? 

In the lead up to Black Friday this year, I’ve been looking out for a new vacuum cleaner (the rock-and-roll life of a thirty-something year-old). Having done all the research, I’m now poised to cash in on the discounts, regularly refreshing my Argos and Amazon tabs for the latest prices. 

But, as I’ve been comparing the relative pros and cons of cordless versus cylinder vacuums (and marvelling at the development of anti-hair wrap technology), it’s been difficult not to have my interest piqued by various other products being put under my nose by these websites, too.  

And difficult not to feel like, if I don’t act quickly, I’m going to miss out on an offer that’ll not come around again. It’s almost as if these marketing executives know how my brain is going work - even before I go online. But are we humans really as transparent as that? 

Netflix’s new documentary, Buy Now? The Shopping Conspiracy, says that we are. It profiles several ex-insiders from the world’s biggest brands, who expose the manipulative tricks used by these corporations to make us buy more, and the extent to which our desire for endless consumption has been cultivated and capitalised on by design.  

It seems that we humans, evolved and intelligent as we like to believe ourselves, are still fallible to serve the things which were designed to serve us. And the consequences are far-reaching. Online shopping may have dehumanised the consumer experience, but we remain connected to people around the world by global supply chains, and it is individuals and communities whose livelihoods are most dependent on the availability and quality of natural resources, and who live closest to the land, who reap the harmful effects of our incessant buying habits.  

Hazardous e-waste, for example (including discarded laptops, phones, and TVs), is rising by millions of tonnes annually. The UK is a particularly bad offender for illegally exporting toxic e-waste around the world, dumping it in landfills where it releases toxic substances such as mercury, zinc, and lead into local water and soil supplies. 

Back here in the UK, we can feel like such small cogs in such a huge, capitalist machine, that a lot of this seems beyond the realms of our human agency.  

There is certainly value in being savvy with our spending power as consumers. In doing the research to get the best Black Friday deals, as we tighten the purse strings and navigate what has become a protracted and painful cost of living crisis for many. It can be hard for Christmas not to feel like an unavoidably expensive time of year. 

But, perhaps there is also an opportunity to take small, subversive acts of resistance against this dehumanising consumer culture. Actions which reclaim our humanity and human agency, and which recognise our global interconnectedness. 

For example, maybe you could resist the urge to impulse buy something this weekend, by stepping away from the screen to make a cup of tea or go for a walk outside, before clicking ‘Pay Now’. 

Perhaps we could get better at comparing companies’ supply chains and ethical brand ratings, using our spending power to support those which align best with our values. 

And, when we’re making a purchase, let’s take a moment to be grateful for the things we already have, the items we’re buying, and the people who made them. 

The Christian faith invites us to reframe how we see our money and belongings through the lens of stewardship. It’s an underrated principle in today’s context. Stewardship goes beyond just thinking about how we spend our income, to the inherent responsibility we have as humans to look after the world around us, recognising that the earth’s resources are not ones we are entitled to, but are gifts which sustain life. 

The principle of stewardship makes it impossible to hide behind a screen and to ignore the impact which our spending decisions have on people and communities around the world, however far removed from our lives they seem. It invites us to use our money and resources to invest in things which will serve us - and others - well, and tells the world that it matters that we challenge systems which perpetuate economic and environmental injustice. 

And, if I happen to miss out on that vacuum cleaner while I’m out for a walk this weekend, at least it’s less than a month until the Boxing Day sales hit our screens.