Article
Ambition
Comment
3 min read

Hopes and fears for the year

Standing on the cold threshold of a new year, Graeme Holdsworth recalls past audacity and whether his aspirations are too timid.

Graeme is a vicar of Marsden and Slaithwaite in West Yorkshire. He also cycles and juggles.

A starry night sky below which a signpost is silhouetted.
Luca J on Unsplash.

Standing in the Vicarage garden, under the clear winter sky, I feel cold to my bones, as though Jack Frost has thrown his coat over my shoulders. I’ve been successfully shedding body-fat since early October when I began to cut out ‘added sugar’ foods from my diet, but it has come with a downside: I need some third-party insulation, preferably lightweight, breathable, wind, and waterproof. I love cycling under clear night skies, pausing away from towns and lights to let my eyes adjust sufficiently to see stars more in number than the sands of the sea, but my enthusiasm for winter riding is dampened by this bitter cold. 

My first truly long-distance bike ride was an overnight cycle across the North Pennines, about 300km. A good friend had turned 40 and invited me to his party at a nightclub in Glasgow. I lived in Teesside at the time and thought it would be great fun to cycle there. I loaded my bicycle bags with party clothes, a change of shoes, and an appropriately expensive bottle of whisky as a gift, then set off into the early evening sunshine. By Bishop Auckland it was raining. Passing across Yad Moss to Alston at midnight, it was snowing. 

I’m older now and experienced enough to know that there is a point where the discomfort of endurance tips over into the endurance of pain, but I still long for the adventure. Like Tolkien’s elderly Bilbo Baggins torn between the comfort of his hobbit hole, and his yearning to see mountains again: my mind returns to summer cycling and riding through the night in shorts and short sleeves. Bilbo’s first journey was one of inexperience and unpreparedness, but he faced his dragon and returned home with tales to tell. Moreover, he didn’t do it alone, he also shared the journey with those who were older and wiser, those who knew what to expect but travelled anyway. 

Will I limit my resolutions for the new year to those that can be achieved beside my metaphorical fireplace? 

As I reflect on this, I think about our church community: those whose faith has been tested by experience, and those who are afraid to take their first steps into a wider world. A mixture of people who tell stories of spiritual wonder and joy, and others who seek comfort and refuge in the familiar. I’m also reminded of the people in this local community who have needed comfort during times of suffering. My soul has become filled with experiences, and I know that there are more frightening ‘dragons’ out there than those I encounter on a long bicycle ride. 

As I stand in the Vicarage garden, shivering, I wonder if I’m at risk of becoming timid. Do my experiences, and those I’ve learned from others, teach me to tread more carefully in the year to come? Will I limit my resolutions for the new year to those that can be achieved beside my metaphorical fireplace? Do I hang up my cycling shoes for those furry lined Crocs my son bought me this year? 

As I type this I realise, I have no desire to surrender to slippers just yet: my aspirations for the year ahead are to fly recklessly in the face of my own painful experiences, to embrace boldness in cycling, faith, and ministry once again. I pray for joy in my heart, and youth in my soul. I hope that my faith filled foolishness will be infectious in our church and our community as I stand hand in hand with the Divine, on the edge of eternity… and jump together. And as for wisdom born of experience: next time I take the dog into the garden, I’ll put a jumper on. 

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.

Support Seen & Unseen

Since Spring 2023, our readers have enjoyed over 1,500 articles. All for free. 
This is made possible through the generosity of our amazing community of supporters.

If you enjoy Seen & Unseen, would you consider making a gift towards our work?
 
Do so by joining Behind The Seen. Alongside other benefits, you’ll receive an extra fortnightly email from me sharing my reading and reflections on the ideas that are shaping our times.

Graham Tomlin
Editor-in-Chief