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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Review
Books
Comment
Digital
Re-enchanting
9 min read

Re-enchanting the anxious generation

The future doesn’t have to be horrible.

Krish is a social entrepreneur partnering across civil society, faith communities, government and philanthropy. He founded The Sanctuary Foundation.

Two teenager lean against a rail, arms crossed, and laugh together.
LaShawn Dobbs on Unsplash.

I meet many anxious people as I wait for meetings in the Palace Westminster, but one in particular stands out. As I was queueing to get through security, a breathless American man rushed over asking if he was in the right place to meet the Minister of State for Universities. Once I had reassured him that he was, and he had caught his breath, I asked him where he was from and what he did for a job. He told me he was a social psychologist from New York. 

Funnily enough, the night before, I had been reading a book by a social psychologist from New York. I asked the man if he had come across the author, Jonathan Haidt. He replied with a smile: “I am Jonathan Haidt.” 

I chuckle when I remember that chance encounter, especially considering the title of his latest book – The Anxious Generation. The book tackles a much more serious topic than queueing nerves. It claims to show, in the words of the subtitle: “How the Great Rewiring of Childhood is Causing an Epidemic of Mental Illness”.  

The Anxious Generation is a tightly argued plea to parents and educators for a radical change in the way that young people are allowed to engage with digital technology in general and social media in particular.  

It follows the line of thought he began in his book The Coddling of the American Mind which argued that ‘helicopter parenting’ has led to such a fragility in young adults that universities are no longer places of open and free dialogue, but somewhere young people feel the need to be protected from ideas they disagree with. That problem was what Haidt was preparing to discuss with the Minister when we met outside Parliament.

“Embracing all this is a desire to maintain and hand on to our children an earth that offers genuine possibilities of flourishing.” 

Mary Grey

The Anxious Generation makes a compelling case for the way we are failing a generation of children. It likens the social media world to another planet that we are all happily sending our children off to without first learning about or checking any of the risks linked with the potentially toxic environment. It concludes that as much as we are overprotecting our children in the physical world, we are under-protecting them in the digital world, thereby complicit in the resulting tidal wave of mental health disorders.   

Haidt writes:  

“Are screen-based experiences less valuable than real-life flesh-and-blood experiences? When we’re talking about children whose brains evolved to expect certain kinds of experiences at certain ages, yes. A resounding yes.” 

Haidt argues that what children need is less screen time and more unsupervised play. Some might call this the re-enchantment of childhood– a rediscovery of wonder, and simple emotional connections with freedom, food, imagination, curiosity, those around them and the great outdoors. Perhaps there is healthy therapy to be found in this re-enchantment through the sharing of art, poetry, and fantasy. Maybe a rediscovery of faith and hope can help to bring healing.  

Mary Grey, Emeritus Professor of Theology at the University of Wales in Lampeter, describes re-enchantment like this: 

“The market’s language of desire must be replaced by reflecting what we really long for, like satisfying relationships and intimacy, meaningful communities where our values are shared, with working conditions that do not create an unbearable level of stress, enough income to cover basic and leisure needs, and planning for the future. Embracing all this is a desire to maintain and hand on to our children an earth that offers genuine possibilities of flourishing. … This is not an invitation to exchange reality for Magic Kingdoms, but to become embodied kinships of women, men, children and earth creatures in a re-imagined and transformed world of sustainable earth communities of healing and hope.” 

The re-enchantment of childhood is an attractive theory. I often find myself comparing my children’s childhood with that of my own. I’m sure I played more in the garden than they do, climbed more trees, cycled more round the block, round the town, and later round the county in my spare time. I remember as a teenager getting on a bus to travel from Brighton to Durham without either parents or phones. Around the same time, I travelled to Tbilisi, Georgia with just a backpack, a map, a couple of friends and quite a lot of self-confidence. I wish that my children could experience some of the pleasures that come with fixing a bike or looking up at the stars or browsing the library to find answers, instead of just googling.  

Yet, at the same time, if my children were making their way to Durham or Tbilisi today, I would certainly make sure they had plenty of charge on their phone and all the necessary mobile data roaming rights, and I would probably WhatsApp them regularly until they arrived safely at their destination.  

Haidt presents a perfect story, one that explains all the evidence. He doesn’t mention anything that might challenge it, or anything that the doesn’t quite fit.

Haidt’s book touches a nerve. Not just because of my own contradictory feelings as a parent, but because of the shocking statistics that reflect the wider state of our nation’s children. With waiting lists for Child and Adolescent Mental Health Services at a record high, a 47 per cent increase in young people being treated for eating disorders compared to pre-pandemic, and an enormous leap in prevalence of probable mental disorder from one in nine children (in England aged 8-25 years old in 2017) to one in five (similar cohort in 2023), the mental health of the next generation is rightly highly concerning.   

The blame has been levelled in many different directions: COVID lockdowns, school league tables, excessive homework, helicopter parenting, screen time, and general disenchantment in society at large.  Some even say the increase is directly related to the increase in public discussion and awareness about mental health disorders.  

For Haidt it is social media that is public mental health enemy number one. However, he does admit he is not a specialist in children’s mental health, child psychology or clinical psychology. This has led to some criticism about his conclusions. Professor Candice L. Odgers, the Associate Dean for research into psychological science and informatics at the University of California challenges head on the central argument of Haidt’s book. She claims:  

“...the book’s repeated suggestion that digital technologies are rewiring our children’s brains and causing an epidemic of mental illness is not supported by science. Worse, the bold proposal that social media is to blame might distract us from effectively responding to the real causes of the current mental health crisis in young people.” 

Similarly Henna Cundill, a researcher with the centre for autism and theology at the University of Aberdeen, wrote last week in an article for Seen and Unseen:  

“From a scientific perspective, the argument is a barrage of statistics, arranged to the tune of ‘correlation equals causation’. “ 

Cundill and Professor Odgers are right to be sceptical. Sometimes we let our commitment to a story shape the way that we read the evidence. If there’s one thing I remember from A- level statistics it is that causation and correlation should not be confused. In his bid to add urgency and cogency to his argument, Haidt presents a perfect story, one that explains all the evidence. He doesn’t mention anything that might challenge it, or anything that the doesn’t quite fit. It is not a scientific treatise - which is both the book’s strength and its weakness.  

Nevertheless, many of the recommendations Haidt suggests are wise and helpful. Even Professor Odgers, to some extent, agrees.  

“Many of Haidt’s solutions for parents, adolescents, educators and big technology firms are reasonable, including stricter content-moderation policies and requiring companies to take user age into account when designing platforms and algorithms. Others, such as age-based restrictions and bans on mobile devices, are unlikely to be effective in practice — or worse, could backfire given what we know about adolescent behaviour.” 

Therein lies the issue. Because of the lack of evidence for the causes, all we are left with – even from the experts – is what may or may not be likely to be effective in practice.   

I wonder if this paucity of robust scientific evidence stems from the fact that the issues facing the next generation are even more complex than we could ever imagine. 

The truth is that hype, hysteria and horror are more likely to gain traction than humdrum and happy medium. 

Every generation is different from the last. My own youth in the UK in the late 1980s when I became part of the video games and micro-computers subculture was just as much a mystery to my parents and teachers.  My generation’s problems were blamed on everything from the microwave to Mrs Thatcher to the milk that we drank following the disaster at Chernobyl.  

It seems to me too simplistic to demonise the technology. It’s an easy sell, after all. In fact, whenever there is a major technical shift, horror stories are created by those who believe the dangers outweigh the benefits. Mary Shelley’s Frankenstein seems to be a reaction to the industrial revolution. The nuclear threat led to movies about Godzilla and 60-foot-tall Amazonian women. The advent of the internet brought us the Terminator films.   

The truth is that hype, hysteria and horror are more likely to gain traction than humdrum and happy medium. Yet, despite the many and serious problems, the rise of new technologies, even social media, also have much to offer, and they are not going away soon. Instead of demonising new technology as the problem, perhaps we need to find ways to turn it into the solution.  

And perhaps there are glimmers of hope. I like the fact that my children are connected to the wider world, that they know people and languages from more diverse places than I ever did. I like that they know what is going on in the world way before the 9 o’clock news. I like the fact that they are on the cutting edge of advancements I will never experience in my lifetime. I like the fact that they can get their homework checked by AI, that they don’t need to phone me up every time they want to try a new recipe, that we can grumble together about the football match in real time even when we are on different sides of the world. I like that they can browse the Bible or listen to podcasts about history while they are waiting at a bus stop.  I like the fact that they have libraries of books at their fingertips, that they can disappear into fantasy worlds with a swipe and don’t have to spend hours at the job centre when they need to find work. And I love the fact that my children and their friends are rediscovering board games, crochet, embroidery and hiking and taking them to a whole new level because they are learning these crafts from experts around the world.  

I sincerely appreciate that Jonathan Haidt cares about the real and desperate problem of youth mental health. His book adds weight to the pleas of those of us advocating for urgent investment into this area. It reminds us of the world beyond the digital borders and it gives us hope that the re-enchantment of childhood is not impossible.  

However, the solution to these complex issues cannot be found in nostalgia alone. We cannot turn back the clock, nor should we want to. The past had problems of its own.  

I would love someone to write a book that looks forward, that equips young people to live in the worlds of today and tomorrow. If, by some strange coincidence, Jonathan Haidt is reading this article and is in the process of writing that book, I do hope I will bump into him again to thank him.