Thanks for this thoughtful essay. One reaction (among many others, unspoken!) from my own experience: Some years ago, after a few months of back and forth with my psychiatrist, I convinced him (or at least, I convinced him to say—but I believe he was being genuine and honest) that being diagnosed with schizophrenia means nothing more than exhibiting some disjunctively specified set of experiences or behaviors. Once we agreed on that basic point, *both* of us began to think about treatment differently, and I'd say for the better. (For my part, it was really just a matter of now being willing to work with him.) In particular, he stopped worrying about treating some underlying 'disease' or 'condition' or whatever (called ‘schizophrenia’, or is it ‘really’ ‘schizoaffective disorder’ or..., or…, or does the name really matter?) and we focused on what could be achieved with regard to living well with those experiences and behaviors, or perhaps altering them where that’s helpful and possible.
In other words, if you take DSM/ICD for what they (mostly) are—disjunctive lists of ‘symptoms’ to which certain names are attached—then it is easy to stop worrying about the names and focus on the ‘symptoms’ (a misnomer in this case, but no further comment on that point here). And then an ‘incorrect’ diagnosis starts to matter a lot less because one is not asking “how do we ‘deal with’ this schizophrenia?” but “how do we cope with these experiences?” (regardless of what we might call them, taken collectively).
I had a somewhat similar experience when I was able to reframe my SZA diagnosis as a description of how I engage with the world, rather than as a judgement on my ability to understand my own life and experiences. When my errors of judgment were re-downgraded to “mere errors of judgments”, rather than cognitive distortions betraying an irreparably broken psyche, it became a lot easier to compensate for them and to learn to live with my situation.
(I primarily experience cognitive distortions, subtle delusions, and negative symptoms including brain fog and slowed thinking, so antipsychotics make me worse, not better.)
Thanks for the very thoughtful essay, Awais. Sometimes, when we are swimming in a sea of ambiguity, I think it helpful to go back to etymology. The term diagnosis, translated from the Greek, means something like, "knowing the difference between" (dia-across, between; gnosis, knowledge). In our initial contact with a patient, we must know the difference between a confused and disoriented patient who is suffering a stroke, from a patient with similar findings who has just ingested PCP ("angel dust"). We must know the difference between a patient presenting with profound grief after bereavement from one experiencing a major depressive episode [1] We must recognize the difference between someone "hearing voices" in the context of a transcendent religious experience from the patient with a psychotic-level process. And so on. We create categories that roughly and imperfectly help us sort out these (and scores of other) diagnostic possibilities.
But why do we bother? It is all in the service of our core mission: to relieve suffering and incapacity, and to restore function and flourishing. To the extent that our nosology helps us achieve that goal, it is useful and "valid." [2]
This is a great article, and great comment above. I almost always have one or more diagnoses that I’m using for insurance purposes and a completely different picture in my head. We are so concerned about being more specific and getting it right.
I wonder if it’s better to acknowledge the ambiguity of psychiatric diagnosis, if there’s value in having a diagnosis that just allows you a lot of wiggle room as a Dr or a patient. It’s counter to science and medicine, it might make us embarrassed. But I personally would sort of prefer to not be described exactly. I’d prefer to think that I can’t be captured by a
code.
We might instead say to patients, “Our diagnoses are quite overlapping and connected. I’m going to suggest this medication because I think it targets your main issue or targets the overlap.”
So most of us clinicians know that the Diagnosis Emperor has only a few clothes on, and the wiser among us can touch base with the DSM but not be ruled by it. It's another reason why it has always bugged me when anyone refers to the DSM as the "psychiatric bible." Just as some read THE Bible literally, most don't. And so those who don't debate and argue and ponder how to interpret the things that are not included, written ambiguously, translated different ways by different translator; some more mystical interpreters see meaning in the spaces in Torah scrolls. And so it is and has been with DSM.
I see this as the main reason why clinical practice isn't worse, and in fact, is pretty good in some hands
"Everybody" knows some DSM categories are more valid and useful than others, yet many talk as if they're all equally valid (or equally invalid).
I get that the DSM revisers maintain a hope that there will be, someday, some grand series of revelations that will yield the Holy Grail of biomarkers; I'd love that. But there's a gulf between hopes and expectations, and I'd be curious if those people - if asked directly - EXPECT those revelations. It folds back on whether one believes that whatever distinguishes the brain of a person we call mentally ill can be separated from a person we call not ill. For me, there's always been too much "soul" in what we try to help with to reasonably expect we can fully discover those distinctions. Biomarkers are not the Holy Grail; being present and helpful is more like it.
There is a category of disorder that is susceptible to misattribution of psychiatric symptoms as being the primary treatable diagnosis, when those symptoms (anxiety, depression, compulsions, obsessions, emotional instability and mood swings, to name a few) are in fact a primary result of the oft overlooked category of neurological difference. I am referring to neurodevelopmental disorders- particularly autism and ADHD.
You mentioned the danger of a case of bipolar disorder being misdiagnosed as ADHD and subsequently placed on stimulants medication, resulting in a manic episode. What about the opposite occurrence, when an ADHDer is misdiagnosed with bipolar II, and placed on mood stabilizers which do nothing to calm the chaos of deficient executive function?
What about the burnt out high masking undiagnosed autistic person who continues to be pushed toward behavioral activation therapy, IOP, exercise- and unknowingly their burnout is exacerbated?
In both of these cases, the individual's feelings of failure and hopelessness can only grow, and it does become a matter of life and death.
I do wonder how much of the failure of the current mental health treatment landscape is attributable to the failure to screen for neurodevelopmental differences that become disorder due to environmental mismatch and the need to mask for survival. These folks are left at high risk of suicide completion as the primary etiology of their depression and anxiety may remain undetected for decades, and eventually their diagnosis gets classified as "treatment-resistant".
When we treat autism and ADHD as mood and anxiety disorders, how could these conditions respond like well behaved, non-treatment- resistant GAD, MDD, and/or OCD?
Why don't we screen for ADHD and Autism first? Is it because our best screeners lack specificity? Because, as was said to me by a more seasoned practitioner, "we have to draw the line somewhere"?
My line is drawn elsewhere- at risking the demonstrated negative outcomes that result from failing to consider autism/ADHD because someone didn't struggle in school, and they display convincingly normal eye contact, and they've learned that suppressing their stems and suppressing their natural urge to discuss their special interest serves them better than unmasking would, at least until they hit burnout and just can't do it anymore.
The negative outcomes of undetected autism and/or ADHD include: worsened mental health outcomes, substance use disorders, incarceration, unemployment or underemployment, victimization and exploitation, higher rates of injury, trauma, and mortality, and secondary chronic health problems like obesity and hypertension.
References:
French, B., Daley, D., Groom, M., & Cassidy, S. (2023). Risks Associated With Undiagnosed ADHD and/or Autism: A Mixed-Method Systematic Review. Journal of attention disorders, 27(12), 1393–1410. https://doi.org/10.1177/10870547231176862
Kentrou, V., Livingston, L. A., Grove, R., Hoekstra, R. A., & Begeer, S. (2024). Perceived misdiagnosis of psychiatric conditions in autistic adults. EClinicalMedicine, 71, 102586. https://doi.org/10.1016/j.eclinm.2024.102586
Thanks for this thoughtful essay. One reaction (among many others, unspoken!) from my own experience: Some years ago, after a few months of back and forth with my psychiatrist, I convinced him (or at least, I convinced him to say—but I believe he was being genuine and honest) that being diagnosed with schizophrenia means nothing more than exhibiting some disjunctively specified set of experiences or behaviors. Once we agreed on that basic point, *both* of us began to think about treatment differently, and I'd say for the better. (For my part, it was really just a matter of now being willing to work with him.) In particular, he stopped worrying about treating some underlying 'disease' or 'condition' or whatever (called ‘schizophrenia’, or is it ‘really’ ‘schizoaffective disorder’ or..., or…, or does the name really matter?) and we focused on what could be achieved with regard to living well with those experiences and behaviors, or perhaps altering them where that’s helpful and possible.
In other words, if you take DSM/ICD for what they (mostly) are—disjunctive lists of ‘symptoms’ to which certain names are attached—then it is easy to stop worrying about the names and focus on the ‘symptoms’ (a misnomer in this case, but no further comment on that point here). And then an ‘incorrect’ diagnosis starts to matter a lot less because one is not asking “how do we ‘deal with’ this schizophrenia?” but “how do we cope with these experiences?” (regardless of what we might call them, taken collectively).
A wonderful illustration from your experience, Michael! Thank you
I had a somewhat similar experience when I was able to reframe my SZA diagnosis as a description of how I engage with the world, rather than as a judgement on my ability to understand my own life and experiences. When my errors of judgment were re-downgraded to “mere errors of judgments”, rather than cognitive distortions betraying an irreparably broken psyche, it became a lot easier to compensate for them and to learn to live with my situation.
(I primarily experience cognitive distortions, subtle delusions, and negative symptoms including brain fog and slowed thinking, so antipsychotics make me worse, not better.)
Thanks for the very thoughtful essay, Awais. Sometimes, when we are swimming in a sea of ambiguity, I think it helpful to go back to etymology. The term diagnosis, translated from the Greek, means something like, "knowing the difference between" (dia-across, between; gnosis, knowledge). In our initial contact with a patient, we must know the difference between a confused and disoriented patient who is suffering a stroke, from a patient with similar findings who has just ingested PCP ("angel dust"). We must know the difference between a patient presenting with profound grief after bereavement from one experiencing a major depressive episode [1] We must recognize the difference between someone "hearing voices" in the context of a transcendent religious experience from the patient with a psychotic-level process. And so on. We create categories that roughly and imperfectly help us sort out these (and scores of other) diagnostic possibilities.
But why do we bother? It is all in the service of our core mission: to relieve suffering and incapacity, and to restore function and flourishing. To the extent that our nosology helps us achieve that goal, it is useful and "valid." [2]
Best regards,
Ron
1. https://www.ministrymagazine.org/archive/2015/05/depression
2. https://philpapers.org/archive/PIETAC-2.pdf
This is a great article, and great comment above. I almost always have one or more diagnoses that I’m using for insurance purposes and a completely different picture in my head. We are so concerned about being more specific and getting it right.
I wonder if it’s better to acknowledge the ambiguity of psychiatric diagnosis, if there’s value in having a diagnosis that just allows you a lot of wiggle room as a Dr or a patient. It’s counter to science and medicine, it might make us embarrassed. But I personally would sort of prefer to not be described exactly. I’d prefer to think that I can’t be captured by a
code.
We might instead say to patients, “Our diagnoses are quite overlapping and connected. I’m going to suggest this medication because I think it targets your main issue or targets the overlap.”
It was a fun read but using tests predictive values when the measurement (psychiatrists) varies that much was a bit odd to begin with
So most of us clinicians know that the Diagnosis Emperor has only a few clothes on, and the wiser among us can touch base with the DSM but not be ruled by it. It's another reason why it has always bugged me when anyone refers to the DSM as the "psychiatric bible." Just as some read THE Bible literally, most don't. And so those who don't debate and argue and ponder how to interpret the things that are not included, written ambiguously, translated different ways by different translator; some more mystical interpreters see meaning in the spaces in Torah scrolls. And so it is and has been with DSM.
I see this as the main reason why clinical practice isn't worse, and in fact, is pretty good in some hands
"Everybody" knows some DSM categories are more valid and useful than others, yet many talk as if they're all equally valid (or equally invalid).
I get that the DSM revisers maintain a hope that there will be, someday, some grand series of revelations that will yield the Holy Grail of biomarkers; I'd love that. But there's a gulf between hopes and expectations, and I'd be curious if those people - if asked directly - EXPECT those revelations. It folds back on whether one believes that whatever distinguishes the brain of a person we call mentally ill can be separated from a person we call not ill. For me, there's always been too much "soul" in what we try to help with to reasonably expect we can fully discover those distinctions. Biomarkers are not the Holy Grail; being present and helpful is more like it.
There is a category of disorder that is susceptible to misattribution of psychiatric symptoms as being the primary treatable diagnosis, when those symptoms (anxiety, depression, compulsions, obsessions, emotional instability and mood swings, to name a few) are in fact a primary result of the oft overlooked category of neurological difference. I am referring to neurodevelopmental disorders- particularly autism and ADHD.
You mentioned the danger of a case of bipolar disorder being misdiagnosed as ADHD and subsequently placed on stimulants medication, resulting in a manic episode. What about the opposite occurrence, when an ADHDer is misdiagnosed with bipolar II, and placed on mood stabilizers which do nothing to calm the chaos of deficient executive function?
What about the burnt out high masking undiagnosed autistic person who continues to be pushed toward behavioral activation therapy, IOP, exercise- and unknowingly their burnout is exacerbated?
In both of these cases, the individual's feelings of failure and hopelessness can only grow, and it does become a matter of life and death.
I do wonder how much of the failure of the current mental health treatment landscape is attributable to the failure to screen for neurodevelopmental differences that become disorder due to environmental mismatch and the need to mask for survival. These folks are left at high risk of suicide completion as the primary etiology of their depression and anxiety may remain undetected for decades, and eventually their diagnosis gets classified as "treatment-resistant".
When we treat autism and ADHD as mood and anxiety disorders, how could these conditions respond like well behaved, non-treatment- resistant GAD, MDD, and/or OCD?
Why don't we screen for ADHD and Autism first? Is it because our best screeners lack specificity? Because, as was said to me by a more seasoned practitioner, "we have to draw the line somewhere"?
My line is drawn elsewhere- at risking the demonstrated negative outcomes that result from failing to consider autism/ADHD because someone didn't struggle in school, and they display convincingly normal eye contact, and they've learned that suppressing their stems and suppressing their natural urge to discuss their special interest serves them better than unmasking would, at least until they hit burnout and just can't do it anymore.
The negative outcomes of undetected autism and/or ADHD include: worsened mental health outcomes, substance use disorders, incarceration, unemployment or underemployment, victimization and exploitation, higher rates of injury, trauma, and mortality, and secondary chronic health problems like obesity and hypertension.
References:
French, B., Daley, D., Groom, M., & Cassidy, S. (2023). Risks Associated With Undiagnosed ADHD and/or Autism: A Mixed-Method Systematic Review. Journal of attention disorders, 27(12), 1393–1410. https://doi.org/10.1177/10870547231176862
Kentrou, V., Livingston, L. A., Grove, R., Hoekstra, R. A., & Begeer, S. (2024). Perceived misdiagnosis of psychiatric conditions in autistic adults. EClinicalMedicine, 71, 102586. https://doi.org/10.1016/j.eclinm.2024.102586