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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
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Middle East
Migration
6 min read

Letter from Istanbul: how many neighbours is it possible to love?

It’s easy to feel overwhelmed by the sheer mass of humanity in Turkey

Becky is a a writer living in Istanbul.

An Istanbul street curves and the sun illuminates one side
An Istanbul street.
Drew McKechnie on Unsplash.

 

Living in the megalopolis that is Istanbul in Türkiye, as the country is now calls itself*, is both wonderful and utterly overstimulating. As the sun dawns earlier in the summer months, I often ponder on what woke me up as I sip my morning coffee. Was it the Call to Prayer from our neighbourhood mosque; the caterwauling cats; fighting crows; howling dogs or squawking seagulls?

Istanbul (formerly known as Constantinople) is where East meets West, and home to up to 20 million people. It's the only city in the world to straddle both Asia and Europe, separated by the narrow Bosphorus sea, which you can cross by ferry in 20 minutes. 

Known in the Bible as 'Asia Minor,' Türkiye boasts a wealth of Christian history and numerous religious sites, including the breathtakingly preserved ancient city of Ephesus.

Once the largest Christian cathedral in the world, the Hagia Sophia in Istanbul’s historic quarter Sultanahmet attracts millions of tourists to its grand Byzantine architecture every year, as both a mosque and a museum. 

Istanbul's gastronomy is among the best in the world. The food, paired with the melting pot of history, faith, and culture, also makes for the warmest sense of hospitality in the world to visitors and newcomers that you could ever imagine. It is a stark contrast to what I was used to in the UK. 

Turkish hospitality is about way more than tulip-shaped glasses of tea and aubergine köfte kebabs; in Turkish culture, a guest is honoured, making them feel as if they belong. From the drawn out etiquette of home visits to literal fights breaking out when it's time to pay the bill, in Türkiye, a guest is seen as a 'gift from God.'

Speaking of hospitality, Türkiye's official population is indeed an estimate due to the constant stream of refugees that pour into the country and settle in Istanbul, hoping to build new, better lives for themselves.

It is a hugely built-up city, with each skyscraper competing for height and a Bosphorus sea view; here and there, you can spy small little houses called gecekondus (which means 'put up at night'). These are the (illegal) homes of newcomers. 

Türkiye is, on the whole, proud of its migration history (and its 2016 agreement with the UN). Of course, it's a country in a prime position to grant refuge to displaced people in neighbouring nations and as a transit country for people trying to emigrate west, and is home to the world's largest refugee population (3.2 million Syrians and up to 222,000 other nationalities). The latest refugees to seek sanctuary in the four thousand year old city are more Iranians. I enjoy friendships with Turkish, Persian, and Syrian friends in my faith community. 

Of course, attitudes vary regarding the many 'neighbours' who make their home in Istanbul. There are complaints that 'enough is enough.' There is a 'Türkiye first' rhetoric that permeates the Caffe Nero I sometimes work in.  (Eye-rolling and body language speak louder than words when the barista is short with a burka-wearing, stroller-pushing mum speaking Arabic. 

And I do get it. 'Istanbul is overcrowded' is a massive understatement. You can't even begin to compare it to the UK immigration rhetoric. 

Behind most discrimination is fear, and secular locals worry that so many refugees in Türkiye could lead to a different religious landscape one day.

I, too, am a guest here in Türkiye, and I am grateful I've been able to make it my home. I'm reminded that every person is worthy of love and respect no matter where they are from. 

Of course world events significantly impact attitudes towards refugees in Istanbul. Sadly, it's a fact that events around the world can shape people's discourse regarding certain people groups. I find it hard to switch off from what's going on around the world, and since Israel bombed Iran last two weeks ago, I've been glued to the news. 

My hairdresser is an Iranian girl who has a residence permit due to her husband's job in hospitality. I asked her how she was doing. She said she's scared for her mum and sister, who are in a city that's being bombed, and she wants to bring them to Türkiye. She said the scariest thing about it all is that all flights are grounded right now, and the internet is inconsistent; they feel utterly helpless. All I can do is hug her and tell her all life is precious to God, and that I am praying for peace.

A week later, I woke up to the news that the USA had struck Iran, with the intention of destroying three of its nuclear facilities. The world waits and watches with bated breath to see what will happen next.

I don’t have the answers for overcrowding or immigration policies, but when I reflect on 'who is my neighbour' I know it is whoever I find standing in front me.

 

Many in Istanbul do ask 'who is my neighbour? It is a question that has been asked for millenia, most famously by Jesus.

Jesus replied with a powerful story that would have pushed the buttons of all those gathered around on issues of race, religion, and hospitality, which became one of his most famous parables. In 'The Good Samaritan,' a traveller and a Jew are brutally attacked and robbed when he's walking from Jerusalem to Jericho. Beaten, bloody, and left for dead on the side of the road, a priest passes by, but instead of helping, he ignores the man and continues his journey.

Next, a Levite who also worked in the Jewish temple comes along the road, crosses to the other side, and walks away.

Finally, a man from Samaria (sworn enemies of the Jews) passes along the road, sees the injured man, and stops. He stops, tends to his wounds, puts the man on his donkey, and takes him to an inn to recover, covering all the expenses from his pocket.

You can imagine the sound of a pin dropping when Jesus asks which of these three was a neighbor to the man attacked by robbers: 'The expert in the law replied, 'The one who had mercy on him.' Jesus told him, ‘Go and do likewise.’

The message is simple- our 'neighbours' are all the people we come across. It's those different from us and even those with whom our ethnicity and national history demand we make enemies. 

As a white woman with a British passport, I am privileged. I can return to the UK when I choose. People don’t wince if they hear me speak English in Caffe Nero. As a resident in Istanbul, I navigate the attitudes and ever-shifting narratives towards immigration in Türkiye by prayer. 

I want to hold space for my Turkish friends who feel scared and frustrated.

I want to be a voice of peace to my friend who sends me a video of missiles heading for Iran over the border from Hatay, Türkiye. 

Living in Türkiye as a woman of faith has changed me, and I can't help but think that if we all adopted the Turkish philosophy of hospitality, which views all guests as gifts from God, deserving to feel like they belong, the world could be a different place.

I don’t have the answers for overcrowding or immigration policies, but when I reflect on 'who is my neighbour' I know it is whoever I find standing in front me, no matter where they come from. I ask for the strength to 'love my neighbor as myself' no matter the country on their ID card (or despite their lack of one). And when I feel overwhelmed by the sheer number of precious human lives arriving in Türkiye every day, I remember that each of them is also a neighbour - and my job is to care for the one in front of me.


* Türkiye is the new spelling of the country’s name. Find out more