This is a story about a young man named Alex.
Alex is 14, over 6ft with size 13 feet! He has dark hair and eyes and a wicked twinkle when he’s joking or telling lies. He’s in the midst of that ‘I can’t be bothered to wash and what’s the point anyway, I don’t care if I smell so why should anyone else’ teenage phase which is truly lovely for all around him. He spends his evenings and weekends playing online games with his cyberfriends and has a knowledge of IT that his parents are in awe of (and somewhat nervous about).
Alex has recently passed his open water diving qualification and has started the advanced course. He loves the feeling of being underwater and is really excited about the career and travel opportunities these qualifications will bring. His parents, of course, are planning on winning the lottery in order to fund this lifestyle for him.
I had the pleasure of meeting Alex as part of my work as an educational psychologist. He and his family have been on a long, arduous journey, in which psychological ‘diagnosis’ – or as they put it, ‘labelling’ – has been ever-present. Here’s a very brief summary of that journey:
- 2013: Alex receives a diagnosis of autism spectrum disorder (ASD) and Tourette Syndrome
- 2014: Alex referred for further assessment, as ASD and Tourette’s are considered not appropriate for the complexity of his condition.
- 2015: Alex is reassessed and diagnosed with six additional conditions: attention deficit hyperactivity disorder (ADHD); anxiety; obsessive compulsive disorder (OCD), oppositional defiance disorder (ODD) and disruptive mood regulation disorder (DMDD).
- 2016: Alex’s mental health continues to deteriorate. Concerns are raised that he may have schizophrenia.
- 2017: Alex is reassessed. All labels are removed except ASD
Imagine what it’s like for a teenager, trying to understand himself, to be told in 2017: ‘None of the labels make sense actually, sorry.’ Imagine the emotional turmoil a family goes through when, after years of assessments, clinics and school changes, it’s decided that every single label a child has, is now repealed.
This case, and many others I’ve come across, calls into question the value of diagnostic labelling. At what point are those labels useful? And when do they do more harm than good?
What’s in a name?
As described by Mary Boyle, Professor of Clinical Psychology at the University of East London who writes eloquently on this subject, diagnostic labelling is based on the assumption that, ‘Troublesome behaviours, emotions and psychological experiences will form the same kinds of pattern, conform to the same theoretical frameworks, as bodily complaints; that these behaviours and emotions are outward symptoms of an underlying internal dysfunction… these patterns can be identified through diagnosis and revealed through research.’
That sounds great, except there are no clear patterns; research does not support the diagnostic model when used alone. As Doyle points out: ‘There is strong evidence that emotional distress and behavioural problems, even the most bizarre, are understandable responses to or ways of actively trying to manage adverse circumstances and relationships.’ Locating problems solely within the an individual’s biology is simply erroneous and is not evidence-based practice.
Knowing this, you might wonder why diagnostic labelling is the norm. The reasons are complex. One reason is: as human beings, we have needs. The need for explanation, for clarity, for what we observe to fit into a pattern. Without ways of fitting our experiences into a clear narrative, we are left baffled and insecure. Everything we hear, see and think about is labelled dependent on our previous experiences and the stories we tell ourselves about the world. When things are presented to us, we label them to ensure that we can make decisions and maintain our sense of control. We label to make things predictable and measurable. We need labels to decide whether we like people, who to vote for, what stuff to buy, what is socially acceptable and what isn’t. Without labels and norms, social anarchy reigns. And we don’t like uncertainty. At all.
The need for answers
When a family or professional can’t understand a child, they want an answer. They need an answer. That’s a normal part of being human. And sometimes, diagnoses are useful. They can help people to develop a sense of who they are, why they interpret the world in their individual way and can provide explanations for emotional states and behaviours. Diagnostic labels can help in signposting the right support for a young person. Sometimes they are empowering.
However, we are human beings. We are messy miracles. We don’t always fit into neat categories. And when a young person like Alex comes along, the process represents a legitimised game of ‘pin-the-tail-on-the-donkey’ rather than a scientifically rigorous procedure.
Of course, clinicians don’t diagnose young people with malicious intent. In my experience, psychiatrists enter the professions because they want to make a positive contribution to society. There is no conspiracy. There is, however, huge pressure from families, schools and others to explain what is happening. Saying ‘I don’t know’ isn’t always easy and is perceived as unsatisfactory.
How did we get here? ‘Devils’ or ‘nutters’?
Diagnosis used to exist in the domain of the mystical and religious. Take, for example, Martin Luther’s contention: ‘My opinion of lunatics is, that all idiots and insane persons are possessed by devils… Physicians may attribute such things to natural causes, and sometimes cure them by medicine, but they are ignorant of the power of devils’. Those daft physicians.
In those days, people with lived experience of mental ill health were labelled as a religiously ‘afflicted’, not ill. Lunatics were ‘treated’ with violence and incarceration of the most hideous kind. Only when mental health became a civil issue, rather than a religious one, were the ignorant physicians allowed to view ‘afflicted’ people as ‘sick’ patients, instead of devil-ridden hoodlums. But whose labelling was ‘true’? Martin Luther or a few rogue quacks trying to use medicine? Heaven forbid.
A whip for the horse, a bridle for the ass, and a rod for the fool’s back.’ Proverbs 26:3
Truth is in the eye of the beholder and some truths are privileged. It has always been this. Fast-forward to the 21st century: Academics like Professor Robert Sapolsky point out that: ‘It is not normally considered a sign of robust mental health to hear voices coming out of burning bushes. This is considered a worrisome sign.’ He goes on to suggest that some of the most iconic religious stories might have been invented and promoted by ‘schizotypals throughout history’.
Today, many in power are desperate to avoid being labelled as religious. Some will remember Tony Blair ducking questions about his faith, for fear of being labelled a ‘nutter’. Wow. What a turn-around. In the 15th century religious figures were the go-to thinkers in regards to mental health. Now, the headlines are: ‘Prominent academic suggest that many religious legends were schizotypal’. Or, ‘Politician avoids association with religion for fear of being labelled insane’. What would Martin Luther have to say about this? Or was he a ‘nutter’?
The point is, the way we diagnose mental health difficulties and decide what to do changes over time. These days, it’s the psychiatrists, not the Martin Luther’s who hold the cards. And the deal seems unpredictable, at best.
Human beings have evolved a consciousness that allows us to develop beliefs in things that do not ‘exist’ in any objective sense. Democracy is an idea, a story which only exists because we all agree it does. What about the rules of football or dating etiquette? They only exist because we construct them, together. Our attitudes and behaviours are shaped by shared fantasies which are our safe base, our comfort cave.
Imagining a world without shared narratives is impossible; they bring us together, they allow us to thrive, survive, communicate, they are what separates us from other animals. These stories can be beautiful. Empowering. Safe. They can also be ugly. Destructive. Horrific. In co-constructing stories we have created: human rights, universal healthcare, Nazism and female genital mutilation. So are some stories we hold more ‘true’ than others?
Where does this all lead?
Diagnostic labels are stories, nothing more. The only reason they appear real is that society agrees that they are. Diagnosis represents a woeful mishmash of assumptions. It’s assumed that certain behaviours, often observed briefly in a clinic or assessed through patient questionnaires, are evidence enough to label a young person as having a diagnosable disorder/abnormality. There is an almost total reliance on symptoms located within the young person; external environmental factors are virtually ignored.
As asserted by Mary Boyle: ‘Diagnostic concepts and their definitions have in fact always been asserted by clinician or committee opinion’, and not as a consequence of research. Quite literally, clinicians sit around a table deciding how to label people’s deepest experiences – when it doesn’t fit into an imaginary norm that they decide, you are ‘disordered’, ‘mentally ill’, a ‘nutter’.
And so today’s labelling is, in many ways, no different than in 1520s Britain, when symptoms showed that people had devils inside them. Something is seen to be wrong with them and these wrong things are decided upon and defined by an in-crowd (mostly psychiatrists). In sum, things haven’t changed that much.
That said, there are members of the ‘in-crowd’ raising their voice is dissent. Joanna Moncrieff, for example: ‘The idea of diagnosis is misleading… They are attempts to organise the myriad of mental health “symptoms” or problems into categories… Mental health problems are highly individual, so there is no universally valid or useful way of classifying them.’
What does this all mean for Alex and his family?
Alex doesn’t fit into categories. It’s dehumanising to think that he, or anyone else, does. His experiences are a striking example of the pathology and limitations of diagnostic labelling. The only honest appraisal of Alex’s condition was thus: ‘We don’t have a clear diagnosis’. Forcing a square peg into a round hole can only damage the peg. And that’s what has happened to Alex as he got older, googling his diagnoses and flailing around trying to figure out what it all means. He is still struggling and his road to recovery will be long.
In many cases, diagnostic labels can be helpful. They can be empowering and supportive for young people and families. As described by one young person: ‘I was finally diagnosed with autism on 23 September 2015 at around 4.03pm, and it felt like everything suddenly made sense.’ Patently, diagnosis can be helpful when it makes sense to a person and is conducted alongside them, acknowledging their experience. Not done to them, ignoring their experience.
We need to move away from the pathologising diagnostic model. Mental health difficulties and developmental difficulties are a normal aspect of human-ness, they are not illnesses. Decisions about how to label oneself should be decided by young people and families, not by clinicians who barely know them. A helpful model might be: ‘This is what it looks like, let’s think together about what this means for this individual young person and what we can do.’ This in contrast to the current model: Enter clinic, have a consultation, complete questionnaires, receive label, ‘Here’s some medication, you’re ill mate.’
As a society, we need to recognise that psychological diagnoses are shared fantasies, subject to constant flux, re-interpretation, professional bias and problems with validity and reliability. In many cases, labels are not evidence-based, they are fictions decided by committee. Reform will take time, patience and political wrangling as currently, funding pathways and education provisions are often designated based on a young person’s diagnoses. It’s also crucial that parents, patients and practitioners recognise that medical professionals don’t always know the answers. Uncertainty does not show weakness or a lack of skill; in fact it shows confidence and wisdom.
For Alex and his family, they are emerging from a diagnostic swamp now, after years fighting against a system which, they felt, was rigid and dehumanising, largely ignored their views, and did not respond to a child as an individual.
Perhaps we can begin to change the conversation. Perhaps we can consider the individual, the environment they exist in and how this impacts upon a them. Most importantly, instead of asking, ‘What is wrong with this young person?’ Why not ask, ‘What is this young person experiencing and how can we better understand and help?’
Dr Christopher Bagley is an educational psychologist. His goal is to co-create a psychologically healthy education system for young people.
