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

Explainer
Comment
Economics
Leading
Politics
Wisdom
5 min read

When someone makes a claim, ask yourself these questions

How stories, statistics, and studies exploit our biases.

Alex is a professor of finance, and an expert in the use and misuse of data and evidence.

A member of an audience makes a point while gesturing.
On the other hand...
Antenna on Unsplash.

“Check the facts.”  

“Examine the evidence.”  

“Correlation is not causation.”  

We’ve heard these phrases enough times that they should be in our DNA. If true, misinformation would never get out of the starting block. But countless examples abound of misinformation spreading like wildfire. 

This is because our internal, often subconscious, biases cause us to accept incorrect statements at face value. Nobel Laureate Daniel Kahneman refers to our rational, slow thought process – which has mastered the above three phrases – as System 2, and our impulsive, fast thought process – distorted by our biases – as System 1. In the cold light of day, we know that we shouldn’t take claims at face value, but when our System 1 is in overdrive, the red mist of anger clouds our vision. 

Confirmation bias 

One culprit is confirmation bias – the temptation to accept evidence uncritically if it confirms what we’d like to be true, and to reject a claim out of hand if it clashes with our worldview. Importantly, these biases can be subtle; they’re not limited to topics such as immigration or gun control where emotions run high. It’s widely claimed that breastfeeding increases child IQ, even though correlation is not causation because parental factors drive both. But, because many of us would trust natural breastmilk over the artificial formula of a giant corporation, we lap this claim up. 

Confirmation bias is hard to shake. In a study, three neuroscientists took students with liberal political views and hooked them up to a functional magnetic resonance imaging scanner. The researchers read out statements the participants previously said they agreed with, then gave contradictory evidence and measured the students’ brain activity. There was no effect when non-political claims were challenged, but countering political positions triggered their amygdala. That’s the same part of the brain that’s activated when a tiger attacks you, inducing a ‘fight-or-flight’ response. The amygdala drives our System 1, and drowns out the prefrontal cortex which operates our System 2. 

Confirmation bias looms large for issues where we have a pre-existing opinion. But for many topics, we have no prior view. If there’s nothing to confirm, there’s no confirmation bias, so we’d hope we can approach these issues with a clear head. 

Black-and-white thinking 

Unfortunately, another bias can kick in: black-and-white thinking. This bias means that we view the world in binary terms. Something is either always good or always bad, with no shades of grey. 

To pen a bestseller, Atkins didn’t need to be right. He just needed to be extreme. 

The bestselling weight-loss book in history, Dr Atkins’ New Diet Revolution, benefited from this bias. Before Atkins, people may not have had strong views on whether carbs were good or bad. But as long as they think it has to be one or the other, with no middle ground, they’ll latch onto a one-way recommendation. That’s what the Atkins diet did. It had one rule: Avoid all carbs. Not just refined sugar, not just simple carbs, but all carbs. You can decide whether to eat something by looking at the “Carbohydrate” line on the nutrition label, without worrying whether the carbs are complex or simple, natural or processed. This simple rule played into black-and-white thinking and made it easy to follow. 

To pen a bestseller, Atkins didn’t need to be right. He just needed to be extreme. 

Overcoming Our biases 

So, what do we do about it? The first step is to recognize our own biases. If a statement sparks our emotions and we’re raring to share or trash it, or if it’s extreme and gives a one-size-fit-all prescription, we need to proceed with caution. 

The second step is to ask questions, particularly if it’s a claim we’re eager to accept. One is to “consider the opposite”. If a study had reached the opposite conclusion, what holes would you poke in it? Then, ask yourself whether these concerns still apply even though it gives you the results you want. 

Take the plethora of studies claiming that sustainability improves company performance. What if a paper had found that sustainability worsens performance? Sustainability supporters would throw up a host of objections. First, how did the researchers actually measure sustainability? Was it a company’s sustainability claims rather than its actual delivery? Second, how large a sample did they analyse? If it was a handful of firms over just one year, the underperformance could be due to randomness; there’s not enough data to draw strong conclusions. Third, is it causation or just correlation? Perhaps high sustainability doesn’t cause low performance, but something else, such as heavy regulation, drives both. Now that you’ve opened your eyes to potential problems, ask yourselves if they plague the study you’re eager to trumpet. 

A second question is to “consider the authors”. Think about who wrote the study and what their incentives are to make the claim that they did. Many reports are produced by organizations whose goal is advocacy rather than scientific inquiry. Ask “would the authors have published the paper if it had found the opposite result?” — if not, they may have cherry-picked their data or methodology. 

In addition to bias, another key attribute is the authors’ expertise in conducting scientific research. Leading CEOs and investors have substantial experience, and there’s nobody more qualified to write an account of the companies they’ve run or the investments they’ve made. However, some move beyond telling war stories to proclaiming a universal set of rules for success – but without scientific research we don’t know whether these principles work in general. A simple question is “If the same study was written by the same authors, with the same credentials, but found the opposite results, would you still believe it?” 

Today, anyone can make a claim, start a conspiracy theory or post a statistic. If people want it to be true it will go viral. But we have the tools to combat it. We know how to show discernment, ask questions and conduct due diligence if we don’t like a finding. The trick is to tame our biases and exercise the same scrutiny when we see something we’re raring to accept. 

 

This article is adapted from May Contain Lies: How Stories, Statistics, and Studies Exploit Our Biases – and What We Can Do About It
(Penguin Random House, 2024)
Reproduced by kind permission of the author.

Celebrate our 2nd birthday!

Since Spring 2023, our readers have enjoyed over 1,000 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