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
Climate
Comment
Sustainability
5 min read

What “drill baby drill” really means for the world’s poor

Climate jargon pales in comparison to hard, hot and harsh realities.

Jane Cacouris is a writer and consultant working in international development on environment, poverty and livelihood issues.

forest tree-tops break a mist.
Forest in Cameroon.
Edouard Tamba on Unsplash.

“Drill, baby, drill,” declared Donald Trump during his inauguration speech in January to roars of Republican approval, going on to sign executive orders to “unleash” the American oil and gas industry to do just that: drill. This, even though the United States is already the largest crude oil producer of any other nation, according to its own Energy Information Administration, and has been for the past six years in a row. 

Fossil fuel combustion is undeniably the largest source of greenhouse gas emissions worldwide says the IPCC, with oil accounting for about 34 per cent of global CO2 emissions from fossil fuels. And World Economic Forum statistics show that the lowest income countries produce only one-tenth of emissions but are the most heavily impacted by climate change.  

Something doesn’t seem very fair here.  

Many of us are aware of the statistics and policies and rhetoric around climate change. It is all buzzing around in the background of our lives, in the news, on social media and in opinion pieces like this one. But if we’re honest, it is all still theory for most of us living in the Global North.  

On a recent work assignment, involving research in remote communities in Southern Cameroon, I found the true extent of climate crisis is hard hitting and very real. According to the IMF, Cameroon is ranked 16th in the world in terms of countries most vulnerable to the impacts of climate change, partly due to its geographical location. 

High levels of rural poverty and the country’s economic dependence on agriculture, which employs over 70 per cent of the population adds to this climate vulnerability. But the government statistics and climate jargon, worrying as it is, paled as I discovered the reality of rural Cameroonians’ lives. Lives that depend almost solely on the productivity of the land, and therefore on the weather. Lives that have no Plan B when the climate is unpredictable.  

The communities we studied live in rural villages many kilometres from any urban centre, and rely entirely on natural resources for their livelihoods. They depend on traditional rain-fed agriculture, hunting for bush meat, and collecting non-timber forest products such as tropical fruits, insects, medicinal plants, herbs and honey from the dense forests near their dwellings to survive.  

The effects of the changing climate have been felt by them for some time. During periods of water scarcity, which is becoming more unpredictable and prolonged, local streams dry up, meaning crop yields fail, such as corn, groundnuts and cassava, and families go hungry. Fishing yields dwindle. The work burden for women rises, as they have to travel further to collect water for drinking, washing and cooking. Poor roads with inaccessible tracks during heavy rain events, or non-existent roads, prevent communities from accessing markets, health care and external support, making them isolated and more vulnerable to climate impacts. 

With the science predicting rising future temperatures and higher seasonal variability in their region, these communities will only become more vulnerable, mirroring the story of millions of other people around the world. They must adapt to survive. The alternative is not surviving. Devastatingly, this is a very possible future outcome.  

I’d say the UK is standing on the side lines in the playground, looking on.  

Why should wealthy, powerful nations mostly responsible for global carbon emissions, not only refuse to compensate those at the receiving end of resulting climate change, but actively seek to cause more damage? It echoes of a bully in a school playground, inflicting suffering on a smaller child, gaining in popularity, power and self-confidence as a few egg them on, others stand by, whilst the receiver of the abuse summons all their remaining strength simply to survive and make it through another day.  

So where does the United Kingdom stand in the playground?  

In terms of domestic climate policy, the UK must meet net zero by 2050, in line with the target set out in UK legislation, i.e. in twenty-five years from now, total greenhouse gas (GHG) territorial emissions must be equal to the emissions removed from the atmosphere. On paper, it seems the UK is on track to achieve this. GHG emissions have halved since 1990, driven by investing in renewable power and phasing out coal in the electricity sector. However, as WWF and others have pointed out, this figure has a glaring omission. Products including clothing, processed foods and electronics imported into the UK are counted as the “manufacturing country’s emissions,” not the UK’s. This is known as “offshoring.” And according to WWF, between 1990 and 2016, emissions within the UK’s borders reduced by 41 per cent, but the consumption-based carbon footprint only declined by 15 per cent, mainly due to goods and services coming from abroad.  

In terms of climate finance for the world’s poorest nations, the UK pledged to spend £11.6 billion between 2021 and 2026, and the government recently said it remains committed to meet this pledge. However, the pot from which this climate finance must come, the UK’s overseas aid budget, was slashed in recent months from 0.5 per cent to 0.3 per cent of national income to prioritise defence spending. Meanwhile, climate experts and charities are warning that what the world needs now is stronger global solidarity in the face of the climate crisis, rather than national self-interest. I’d say the UK is standing on the side lines in the playground, looking on.   

Trump professes to be a practicing Christian… I wonder what would Jesus have to say about the way America and other wealthy nations have dealt with the climate crisis? One of Jesus’ most well-known and powerful teachings was to love your neighbour. The parable of the Good Samaritan in the Bible demonstrates the way we should treat our neighbours; acting with love, compassion and mercy, not only towards those we know or who live in our friendship network, community or country, but towards every human being, regardless of nationality, background or social group. In the context of climate change, Christians are called to love our global neighbours. This includes supporting the world’s poorest communities to thrive, speaking up on their behalf, demonstrating love through political and social action. Jesus certainly doesn’t teach us to put ourselves “first.”  

Imagine a world where every nation signed up to Jesus’ teaching on how to treat our neighbours. Would climate change abruptly halt, human suffering stop and global peace prevail? In truth, probably not, because humanity is imperfect and we get things wrong even when we mean well. But if the intention was there, and if world leaders looked to Jesus’ lead on this, there is little doubt we would be many steps closer.  

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