Review
Books
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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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Character
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Leading
Trauma
3 min read

Could I strike a deal after a public humiliation?

How to come back from setback after setback.

Jean is a consultant working with financial and Christian organisations. She also writes and broadcasts.

President Zelensky speaks and a caption reads ' on the economic partnership with the United States.
The art of the deal.
x.com/ZelenskyyUa

‘USA and Ukraine sign a minerals deal.’  

Two months ago, this headline looked impossible. The world watched in horror as President Zelensky was mistreated in the Oval Office and then appeared to be booted out of the White House before scheduled negotiations for the deal could begin. Zelensky left Washington having been publicly humiliated by the most powerful leader in the world.  

Whether he was blindsided, underprepared, badly briefed, misguided, disrespected, the victim of bullying or some combination of all of the above, the stakes for both him and Ukraine were as high as it could possibly get.  

These sort of political bust-ups if they happen, happen behind the scenes. But this was in the open, on air, for all the world to see. Not only then but it is available to view online in perpetuality.   

Now for just one minute, put yourself in President Zelensky’s shoes, what would be your next move? Me, I am probably going to cry, check my socials, go to sleep and say I am going home. I am done for the day. So many thoughts would be going through my mind. In all honesty, I would probably be going through all the stages of grief!  

Denial – ‘I can’t believe that just happened. Did they really just throw us out?’  

Anger – ‘What was J.D. Vance doing? Why did they gang up on me? I thought we were allies. I am not coming back here ever again.’ 

Bargaining – ‘Let’s get them on the phone. Does anyone have a contact we can reach out to? Can someone try to call the Secretary of State, Marco Rubio on private number?’ 

Depression – ‘What have I done? I have made things infinitely worse for my people and our country. Will we ever win this war? Will I be responsible for the surrender and end of Ukraine? Maybe I should resign and we hold elections?’ 

Acceptance – ‘It has happened now. No use crying over spilt milk.’ 

At this point I would say, ‘I am going to bed. Let’s start again in the morning’ (I think you can see why I am not a political leader).  

When I put myself in President Zelensky’s shoes and I think back to that day in February, (putting the war itself aside) and contrast it with his recent meeting with President Trump at Pope Francis’ funeral alongside the minerals deal, I am reminded of old wisdom found in an old book - the Bible.  

'Even if good people fall seven times, they will get back up.' 

Public humiliation, shame, disappointment and failure are often times when we give up and disqualify ourselves. Rather than view it as a moment in time, we tend to claim our failure, mistake or mishap as part of our identity. This often causes us to walk away from good opportunities and hold ourselves to an unattainable standard. My Christian faith teaches me to place my identity not in anything I do but in what Jesus Christ did for me when he died on the cross for my mistakes. Jesus like Zelensky, faced public humiliation and shame. He is the ultimate example of how I ought to respond in the face of opposition. Jesus did not respond to his accusers and remained focus on his mission to save not just a one nation but an entirely broken world.   Every so often I need to be reminded of this.  

Very few of us, if any of us, will ever face the level of public humiliation or as high stakes as President Zelensky did on that day (even if it feels otherwise). Things will go wrong, we will make mistakes, people will cause us embarrassment, but it will only be for a moment in time. This new minerals deal is a reminder that things can and will get better. Our mistakes or bad circumstances do not define us, we can and will recover if we are able to get up and try again. 

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This is made possible through the generosity of our amazing community of supporters.

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