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
Comment
Mental Health
Politics
4 min read

Rachel Reeves’ tears: public life still mocks those who show anything but the positive

‘Mental health awareness’ is failing, our words are not matched by our actions

Rachael is an author and theology of mental health specialist. 

 

 

A woman sits and holds back a tear.
Rachel Reeves on the front bench.
Parliament TV.

It’s a bad day at work. Everyone is on high alert, and tempers are frayed. You have your own reasons for being extra ‘on edge’, but now isn’t the time to get into it because it’s the big weekly meeting and everyone is going to be there - worse still, the cameras are going to be there. Despite this, you take a deep breath and take your seat (which, although an honour, is regrettably in the front row).  

But as the fractious meeting begins, you feel the ache of impending tears at the back of your throat, and to your horror, your eyes fill. You do your best to wick them away, but you know they’ve been spotted when someone opposite announces how miserable you look. 

Many of us will have been in a similar, if probably less public, situation at some point in our careers when the emotions we stuff down in the name of professionalism spill out - but I doubt any of us will have done so in the House of Commons with cameras trained on every movement and a less than friendly crowd opposite.  

There have been countless articles already speculating about the reason for the tears of the Chancellor, Rachel Reeves, during Prime Minister’s Questions - but most seem devoid of sympathy or empathy, concerned only with the political implications, but not the person at the centre of this story.  

Our reaction to Rachel’s tears is an echo of the sentiment behind the Welfare Reform Bill, which seems to say that need is unacceptable and we should all be able to don that famously British ‘stiff upper lip’ and just get on with life.  

Regardless of what you think of the Welfare Reform Bill, the way it has been briefed and communicated has raised anxiety and fear amongst the disabled community (me included).  

The main message has been that too many people are receiving Personal Independence Payments (PIP) for mental illnesses such as anxiety and depression, with even the former Prime Minister Tony Blair telling people to ‘stop diagnosing themselves’ to combat out rising welfare bill - despite the fact that accessing PIP requires rigorous assessments and support from medical professionals. (It also has a 0.01% fraud rate and was designed to compensate people for the extra cost of being disabled which is estimated to be up to £1000 a month.) 

This tableau is emblematic of how ‘mental health awareness’ is failing in this country; our words are not matched by our actions. 

We know, 27 years after the first ‘Mental Health Awareness Week’, that mental health is important, that emotions are natural and valid - and yet we mock any leader who shows anything but positive emotions.  

We know that people suffer, are disabled by and killed by mental illnesses, and yet we seek to strip support from those who need it most, claiming that they are diagnosing themselves. 

We need a different approach, both to how we handle emotions in public life and the way we talk about those who need extra support due to their mental illnesses.  

Emotions aren’t bad - they help us connect, keep us away from danger and allow our bodies to release unbearable tension, as in the case of crying, whereby tears of pain are intricately designed to help us cope. The tears we shed when faced with chopping a pile of onions are chemically different to those that fall when we are grieving, angry or in pain. Tears of pain should inspire us to reach out to the one in pain with compassion not contempt.  

The way Jesus led 2,000 years ago shows us another way, both of leading and emoting.  

Jesus consistently welcomed those most in need; from healing the woman who had bled for twelve years, considered unclean and rejected by her community, to healing a paralysed man lowered through his roof by friends.  

And yet his ministry was not just one characterised by miracles and might, but demonstrated humility and humanity as he wept over the death of his friend Lazarus and allowed himself to be stripped of all strength as he hung on a cross made for criminals.  

The night before he died, he gathered his friends and through tears and blood-soaked sweat submitted to the Father in the most painful way, and I, like many others, draw comfort and strength from Jesus’ willingness to cry.  

As preacher Charles Haddon Spurgeon said, "A Jesus who never wept could never wipe away my tears."  

So perhaps rather than mock Rachel’s tears, they should cause us to rethink how we approach need and recognise none of us are immune.  

Perhaps, we may even join with Paul’s words in his letter to the Corinthians: “For when I am weak, then I am strong.” 

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