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From label to conversation: what could the future of diagnostics look like?
Karolien Koolhof •
Suppose you go to a practitioner with a suspicion of ADHD or autism. At the moment, you usually get a list of criteria and a label. Only afterwards does the search often begin for what that label means for you. But what if diagnosis were mainly a conversation instead of a verdict? A number of recent studies argue for exactly that. What would it actually look like?
The DSM (the psychiatric/psychological handbook that lists all the disorders) was originally developed to provide a common language for talking about mental health. It has mostly become the language of professionals, though. Veldmeijer and colleagues (2024) show that the DSM encodes a way of looking that leaves little room for the person themselves. Take ADHD criteria that treat someone disliking something as a symptom, without asking what that behavior means for that person. A preference quickly becomes a disorder.
According to Köhne (2020), our thinking about disorders often implicitly assumes a single underlying cause per label. Yet decades of research have not found such a cause for most disorders. Even for autism, the neurobiological basis has not been established. Moreover, two people with the same diagnosis can have very little in common, because there are multiple ways to meet the criteria.
A third source, a chapter from the book Personal Recovery and Mental Illness: A Guide for Mental Health Professionals (Slade, 2009), makes a distinction I find very useful. With a physical illness, a diagnosis is an explanation: inflammation of the meninges causes meningitis. With psychiatric and neurological diagnoses, it is usually an interpretation, a way of understanding that helps one person and not another. The author therefore suggests saying not "you have depression" but "your experience can be understood as depression."
A diagnosis can also be received in very different ways. It can be an enormous relief ("I'm not lazy, I'm not crazy") and at the same time open the door to a story in which only what doesn't work counts. That overlooks how the person experiences it. What would it look like if that perspective were taken into account as well?
Boundary object
The first idea for the future comes from Veldmeijer and colleagues. They propose seeing the DSM as a boundary object: something that adapts to whoever is working with it, but remains recognizable. Both professional and client can give it their own meaning. Instead of fixed categories, broad spectra could serve as the starting point for a conversation. This fits how many neurodivergent people already describe their own experience, namely as a profile rather than a box.
Köhne focuses mainly on the connections between things. She looks at network approaches, in which complaints reinforce each other rather than having just one cause. As an example, she describes a woman with an eating disorder whose network contains not only symptoms but also, for instance, family relationships and feelings of powerlessness. For neurodiversity, that would mean exploring together how sensory processing, energy, relationships, and environment influence each other, including what does work.
Slade points out that standard assessments capture almost only deficits and risk factors, while protective factors and strengths are hardly ever asked about. He also describes models in which the problem does not lie solely with the person. In the social model, limitations arise from an environment that offers no room. In the diversity model, being different is an identity rather than a defect. That last one is close to neurodiversity thinking. An additional insight: the line between "normal" and "disorder" turns out to be more fluid for many experiences than categorical thinking suggests.
In practice
Where does all of this come together? You might picture an intake that starts with the question of what a practitioner should know about you, paying attention to strengths as well as difficulties, to context and not only to criteria. A diagnostician could explain that an ADHD or autism description is a collection of commonly occurring patterns, not an explanation.
Adjustments at school and at work would become a full-fledged form of support, alongside or instead of changing the person. And people with lived experience would help decide what all of this looks like. That last point has never really been taken seriously until now.
There are, however, a few things that make this difficult. In the Netherlands, a DSM classification is required for reimbursement and certain provisions. Simply abandoning that could harm people. But you could consider using different tools for different purposes. For research and administration you need group classifications, but personalized support belongs at the individual level. Too much emphasis on the individual can also eventually swing too far in the other direction, so balance remains important.
Ultimately, diagnosis works best as the beginning of a conversation, not the end of one. The starting point is that people are the experts on their own experience. That means asking less often which label fits and more often what belongs to someone's story.
About the author
- Karolien Koolhof is a coach for introverts and gifted individuals
- Author of the book Introvert Leadership
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