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
Culture
Wildness
6 min read

My open letter to Sally Rooney: dilatasti cor meum

You enlarge my heart.
A book cover depicts a yellow and white chessboard with pieces casting shadows of people.

This is silly, I realize. You’ll never see this. But I’ve just finished Intermezzo and I’m not sure what else to do with the bright sadness upon finishing it.

I can’t imagine I am your anticipated reader. I have children your age, for heaven’s sake. You write from, and about, worlds that are, in some ways, a foreign country for me. Sometimes I read your novels like Lévi-Strauss’s field notes from his years with the Nambikwara, describing the practices and rituals and mores of some foreign tribe—except that tribe includes my own children and the students I encounter everyday. Sometimes this makes me feel very old, and tired, and a little bit sad. Not in a judgmental way. I can’t imagine how hard it is to be 23 years old today. I feel badly about the world we’ve bequeathed to the twenty- and thirtysomethings that populate your novels. Your novels give me a glimpse into how they experience it. Which is what I love about the best fiction—the way it is a technology of mindreading, teleporting us into another’s perspective.

I don’t know, maybe it’s weird and kinda creepy that an old man like me gobbles up a novel like Intermezzo. Like a kind of voyeurism. I hope not. Because, in the end, what you achieve is at once the construction and revelation of a human world. And as Terence said, nothing human is alien to me.

This will sound crazy, but from the very first pages of Intermezzo I found myself reading with a strange sort of ache in my heart. Not a pain as much as a held-breath sense of ekstasis, of being stretched and pulled out of myself. I think now I’d say I was responding to what I can only describe as the tenderness you show your characters. I don’t mean for a second that you shrink from portraying their brokenness, even their brutality at times. But only that as you track their mystery and monstrosity you situate all of it in their ineradicable humanity. And in contemporary fiction, that is rarer than some might think. It speaks to me of a fullness that characterizes the matrix of your imagination, from which these characters were born. You don’t let them escape judgment; but that judgment comes from their own social worlds, not the caustic condescension of you as the narrator. This is where your mastery of free indirect speech is so uncanny: you stay near your characters, you listen closely, but somehow in the alchemy of your prose even their own harsh self-judgment is portrayed with tenderness and understanding.

Honestly, it reminds me a lot of how the mystical tradition portrays God, that Creator of all creators, the Narrator who is in love with every feeble creature, every loathable antihero, which is to say every single one of us, protagonists in dramas we don’t realize. There’s this marvelous line in The Cloud of Unknowing where the medieval sage says, “It is not who you are or what you’ve been that God sees with his merciful eyes, but what you want to be.” This will make you cringe, but your narration echoes that. You see what Peter and Ivan want to be. And in so doing, you help me look at all the human beings around me with the same sort of eyes. Or at least I want to be that person.

OK, this is, like, crazy word association, but as I was reading Intermezzo a line of prayer kept coming to mind. You might know it. It’s from the Psalms. It’s part of Prime, the first hour of the Divine Office. St. Teresa of Ávila talks about it a lot. Dilatasti cor meumYou enlarge my heart. You dilate my heart. You widen the scope of what my heart can take in and absorb. This, in the end, is what Intermezzo does. For me, at least.

It’s funny, you know. I finished the second half of the novel while I was attending the annual conference of the Hegel Society. (I thought you’d get a chuckle out of that.) So in the margins of Intermezzo I have scribbled notes like: Recognition! Master/slave dialectic!3 But it’s really not so crazy, is it, because, like Hegel, you seem to intuit how much we long to be seen, to be recognized, and why that means passing through the crucible of forgiveness to achieve reconciliation. This is why I think you are attuned to a below-the-surface rumbling in your generation that, against all the forces of capital and Distraction, Inc. and just the bullshit of consumer nihilism, can’t quite shake a yearning, or at least a wondering, if there’s something more—something like “meaning” or significance we could feel pulled into. I love it that, in Intermezzo, this culminates in a vision of community. (I’m trying not to spoil anything here, since, ahem, my wife hasn’t been able to finish the book yet.) Being known, being seen, being forgiven, being loved. Belonging.

My aforementioned (long suffering, forgiving) wife loves a song by the Highwomen called “Crowded Table.” She plays it full blast in our kitchen when she’s preparing for dinners when she gathers beloveds near. “I want a house with a crowded table / and a place by the fire for everyone.” I thought of the bridge of the song at the end of Intermezzo.

Everyone’s a little broken
And everyone belongs.

I finished your book on a packed train from Boston to Philadelphia and decided not to be embarrassed that I was weeping. The older I get, the more paternal I become, I’m realizing. I don’t think that’s an expression of control or “paternalism” in the negative sense. At least I hope not. It’s more that the older our kids get, more of the world is filled with people who look like the children I love. I don’t mean that I infantilize them, either. I treasure the adults they’ve become.

I’m not describing this very well. What I’m trying to say is, I am just an inveterate dad. I can’t help it. So as much as I read your novel as a scholar or a philosopher or a fellow human, I couldn’t help reading it as a dad. And when I spent time with Peter and Ivan and Sylvia and Naomi, I just wanted for them what I want for my own children and their spouses—for them to know they are loved and held dear and for them to find their people. It’s silly and sappy, but I wanted to talk to Ivan and Peter and tell them: It’s possible. There is still love in the world. Even more incredibly: there is forgiveness. Intermezzo has the audacity to not only hope this but to portray it. I know it costs you something to do so in a literary world that prizes cynicism and distance.

Maybe I wept at the end of Intermezzo because it was as much a mirror as an icon. Despite the generational gap, you gave me occasion to see my own life reflected back to me. In the mirror is an us (“The that is we and the we that is I,” as Hegel put it). I look in the mirror of longing & hope that is your novel, and looking back I see my wife, Deanna, who has been forgiving me for over 35 years, letting me know I am beloved. And we’re surrounded by our children, the overflowing of our own love, these children who have become such dear friends, who have forgiven me more times than I can count. And in that mirror their spouses are alongside them, our dream come true—the beloveds they have found who forgive them and welcome them home over and over again. It’s a crowded table. And there’s always more room. Everybody’s a little broken, and everybody belongs.

I guess what I want to say is: I admire your courage to write a novel that tells the truth—that love gets the last word because it is the first word that speaks us all into being, the origin of the world.

Gratefully,

A reader

 

This article first appeared as a post on James K.A. Smith's Quid Amo Substack. Reproduced by kind permission.