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
Comment
Death & life
Psychology
3 min read

A survivor shares how we can help prevent suicide

Allowing people to voice their despair makes space for hope to grow.

Rachael is an author and theology of mental health specialist. 

 

 

yard signs read: Don't give up. You are not alone. You matter.
Yard signs, Salem, Oregon.
Dan Meyers on Unsplash.

Were there signs I missed? 

Why couldn’t they stay for me? 

Could I have done something? 

These and a million other questions fill the minds of those who lose a loved one to suicide - and there are no easy answers.  

Suicide evokes a particular loss which can torment those left behind with grief and guilt. With suicide rates reaching a twenty-five-year high, too many people are living with these unanswerable questions. 

At the heart of many of these questions is the stigma which still surrounds suicide; it was only eighty years ago that suicide was still a crime and much of the condemnatory thinking remains.  

People still believe that suicide is somehow selfish, that it’s the reserve of only those most severely affected by mental illness or that nothing can stop someone from taking their own life if they’re considering it.  

The truth is far more complex and, thankfully, far more hopeful because whilst suicide is complex - it can be prevented.  

A heartbreaking 1 in 15 people will attempt to take their own life - and most will survive, with trauma, yes but also with the opportunity to build a life that they can bear. 

Suicide prevention involves the whole of society. From government, charities, families and friends, it has to begin with shattering the myths that perpetuate the stigma. And, we need to begin by changing the language we use: Suicide is not a crime that is committed so people don’t commit suicide, they die by suicide and by moving away from the language of committing we can begin to accept that suicide is no-one’s fault - it’s a tragedy.  

Suicide is not selfish; for many people in the depths of suicidality, they believe that they are relieving their loved ones from a burden, and it can affect anyone - including those with no history of mental ill-health.  

Many have believed in the past that once someone has decided to take their own life, there is nothing that can be done to stop them, but suicide is preventable with openness and honesty.   

A heartbreaking 1 in 15 people will attempt to take their own life - and most will survive, with trauma, yes but also with the opportunity to build a life that they can bear, but they need help to do so.  

We each have a role by reaching out with kindness and creating sanctuaries. 

As a teenager, I twice attempted to take my own life and I’ve lived with thoughts of suicide for almost twenty years, but I am still here - in large part due to the kindness of others as they held hope for me when I could not manage it alone.  

Perhaps strangely, the place I wanted to be the most in the wake of my attempt was church; it was the place I felt the safest and I wanted to be in a place where I could cry and let out my conflicted and confused feelings to God because I felt there was no-one that could understand what I was going through. I remembered the character of Elijah in the Bible who begged God for death and was met with God encouraging rest, nourishment and the opportunity to pour his heart out. It was what he needed in his darkest hour, and it was what I needed in mine.  

We cannot take on the role of mental health professionals - and neither should we - but we can be prepared to hear the hardest words and to listen to someone’s thoughts of suicide because research shows us that allowing people to give voice to their despair makes space for hope to grow.  

When people are struggling with thoughts of suicide or trying to navigate the aftermath of a suicide attempt, we each have a role by reaching out with kindness and creating sanctuaries; safe spaces for those who are struggling to express their despair and receive compassion. It might look like dropping around a meal, listening to them pour their heart out, advocating for them with mental health professionals or offering childcare or running errands.  

We can all play our part in changing the culture around suicide with language, care and holding hope for those who feel that all hope is lost.