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The Age of Diagnosis: How Our Obsession with Medical Labels Is Making Us Sicker
From a neurologist and award-winning author of The Sleeping Beauties, a meticulous and compassionate exploration of how our culture of medical diagnosis can harm, rather than help, patients
I'm a neurologist. Diagnosis is my bread and butter. So why then would I, an experienced medical doctor, be very careful about which diagnosis I would pursue for myself or would be willing to accept if foisted upon me?
We live in an age of diagnosis. The advance of sophisticated genetic sequencing techniques means that we may all soon be screened for potential abnormalities. The internet provides a vast array of information that helps us speculate about our symptoms. Conditions like ADHD and Autism are on the rapid rise, while other new categories like Long Covid are driven by patients themselves.
When we are suffering, it feels natural to seek a diagnosis. We want a clear label, understanding, and, of course, treatment. But is diagnosis an unqualified good thing? Could it sometimes even make us worse instead of better?
Through the moving stories of real people, neurologist Suzanne O'Sullivan explores the complex world of modern diagnosis, comparing the impact of a medical label to the pain of not knowing. With scientific authority and compassionate storytelling, she opens up new possibilities for how we might approach our health and our suffering.
I'm a neurologist. Diagnosis is my bread and butter. So why then would I, an experienced medical doctor, be very careful about which diagnosis I would pursue for myself or would be willing to accept if foisted upon me?
We live in an age of diagnosis. The advance of sophisticated genetic sequencing techniques means that we may all soon be screened for potential abnormalities. The internet provides a vast array of information that helps us speculate about our symptoms. Conditions like ADHD and Autism are on the rapid rise, while other new categories like Long Covid are driven by patients themselves.
When we are suffering, it feels natural to seek a diagnosis. We want a clear label, understanding, and, of course, treatment. But is diagnosis an unqualified good thing? Could it sometimes even make us worse instead of better?
Through the moving stories of real people, neurologist Suzanne O'Sullivan explores the complex world of modern diagnosis, comparing the impact of a medical label to the pain of not knowing. With scientific authority and compassionate storytelling, she opens up new possibilities for how we might approach our health and our suffering.
320 pages, Hardcover
First published March 18, 2025
126 people are currently reading
1,465 people want to read
About the author
Suzanne O'Sullivan
8books127followersSuzanne O'Sullivan is an Irish neurologist working in Britain who is the winner of the 2016 Wellcome Book Prize. She won for her first book, It's All in Your Head: True Stories of Imaginary Illness, published by Chatto & Windus in 2015. The book also won the Royal Society of Biology General Book Prize.
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April 13, 2025
We as a society can place really disproportionate weight on the significance of diagnosis, the overreliance on all the fancy shiny diagnostic tools as well as expanding the diagnostic criteria so that more and more people fall under the umbrella of this or that diagnosis. What we are looking for is of course the certainty of the answer. But is it always what’s actually helpful?
And the diagnoses multiply. Does that mean we are actually sicker and only now finding the ways to describe it? Or is there a fair share of “diagnosis creep� and pathologizing of mild variations of normal? And are we medicalizing issues that are more social and societal as well as expecting unrealistic “perfect� health while anything other than it perceived as illness rather just a variance of normal? Is more necessarily better when it comes to diagnoses?
But what is the point of assigning diagnoses? Is it for the purpose of treatment, in which case bad news for conditions that still do not have that as an option. Is it for the benefit of validation, proof that the symptoms have a real medical cause? Is it to allow the patients to tap into the necessary resources not available until the insurers see the magical diagnosis that makes paying for interventions justified?
Suzanne O’Sullivan, a British neurologist, looks at the ever-expanding diagnosis barrage with a critical eye. Whether one agrees with her on everything or not, I don’t think it’s possible to leave her book without at least some questions and a list of things to really think about.
One of the issues she ponders is whether the expansion of diagnostic criteria to include more and more people under the umbrella of a disease � therefore bringing in people with much milder forms to the point where the disease sufferer no longer fits the original criteria � dilutes the disease, therefore impacting the resources available and studies necessary to benefit those impacted the hardest, those with the most severe forms. O’Sullivan questions whether that benefits the people who are now have the diagnosis; does their quality of life improve; do the accommodations made actually create a long-term difference or just a sense of dependence on them? And yet she admits that even in the cases where to her there’s no measurable improvement in her opinion, people may still be happier just due to the validation of actually having a diagnosis and an explanation for the symptoms.
Another thing that concerns her is the idea of incorporating diagnosis into a person’s identity, especially when it happens in childhood when the self of self is still forming. And especially when it can be argued that the diagnoses given are pathologizing what may be just a variance of normal.
Predictive genetic testing also gets the spotlight. Are we better off knowing our possible future risks or can this be a source of anxiety and psychosomatic galore of issues even in the situations where it’s not definite that the dreaded disease would occur? What do you do with advance knowledge that an incurable severe disease like Huntington’s is in your future? Are we wasting the present by dwelling on anxieties about certain or uncertain future? Is it better to know or to hope? Do people sometimes just need permission NOT to test, NOT to know? And of course, there’s never one correct answer, and O’Sullivan gives empathetic consideration to both approaches.
And the most interesting part for me was actually how the diagnosis was made. O’Sullivan argues that no matter which fancy tools you have at your disposal, nothing can replace clinician’s judgment. The tests need to be interpreted in the light of the patient’s story, the clinical presentation. As tempting as it is to think that a blood test, a genetic test or a fancy MRI would give the most precise diagnosis, they also give you a lot of “noise�, a lot of information of dubious significance that we don’t know what to do with. There will be many “incidentalomas� � finings in tests that may or may not be contributing to any disease or pathology � that we don’t know what to do with and that are prone to cause needless anxiety. For instance, if a child presents with something different from the norm, gets a genetic test in hope that something pops up to explain what happening, and something if uncertain significance pops up, what do we do? Do we assume that an unclear finding is a culprit? And what if there’s no help available? What’s the point then?
This book can end up seeming contentious and polarizing and infuriating to those who may feel that O’Sullivan tries to invalidate their conditions and diagnoses. But she is not dismissive or flippant. Rather, she argues against bad science and overreliance on things we use but do not fully understand. She doesn’t fall into the seductive trap of offering simple answers and understands that there are several sides to most issues.
And although I don’t always agree with her, I appreciate that she made me think and reconsider some well-ingrained assumptions and misconceptions. Love it or hate it, this book will make you think.
4 stars.
And the diagnoses multiply. Does that mean we are actually sicker and only now finding the ways to describe it? Or is there a fair share of “diagnosis creep� and pathologizing of mild variations of normal? And are we medicalizing issues that are more social and societal as well as expecting unrealistic “perfect� health while anything other than it perceived as illness rather just a variance of normal? Is more necessarily better when it comes to diagnoses?
“It could be that borderline medical problems are becoming ironclad diagnoses and that normal differences are being pathologised. These statistics could indicate that ordinary life experiences, bodily imperfections, sadness and social anxiety are being subsumed into the category of medical disorder. In other words: we are not getting sicker—we are attributing more to sickness.�
But what is the point of assigning diagnoses? Is it for the purpose of treatment, in which case bad news for conditions that still do not have that as an option. Is it for the benefit of validation, proof that the symptoms have a real medical cause? Is it to allow the patients to tap into the necessary resources not available until the insurers see the magical diagnosis that makes paying for interventions justified?
Suzanne O’Sullivan, a British neurologist, looks at the ever-expanding diagnosis barrage with a critical eye. Whether one agrees with her on everything or not, I don’t think it’s possible to leave her book without at least some questions and a list of things to really think about.
One of the issues she ponders is whether the expansion of diagnostic criteria to include more and more people under the umbrella of a disease � therefore bringing in people with much milder forms to the point where the disease sufferer no longer fits the original criteria � dilutes the disease, therefore impacting the resources available and studies necessary to benefit those impacted the hardest, those with the most severe forms. O’Sullivan questions whether that benefits the people who are now have the diagnosis; does their quality of life improve; do the accommodations made actually create a long-term difference or just a sense of dependence on them? And yet she admits that even in the cases where to her there’s no measurable improvement in her opinion, people may still be happier just due to the validation of actually having a diagnosis and an explanation for the symptoms.
“I saw a worrying gap between the perceived benefit of being diagnosed and any actual improvements in quality of life.�
Another thing that concerns her is the idea of incorporating diagnosis into a person’s identity, especially when it happens in childhood when the self of self is still forming. And especially when it can be argued that the diagnoses given are pathologizing what may be just a variance of normal.
Predictive genetic testing also gets the spotlight. Are we better off knowing our possible future risks or can this be a source of anxiety and psychosomatic galore of issues even in the situations where it’s not definite that the dreaded disease would occur? What do you do with advance knowledge that an incurable severe disease like Huntington’s is in your future? Are we wasting the present by dwelling on anxieties about certain or uncertain future? Is it better to know or to hope? Do people sometimes just need permission NOT to test, NOT to know? And of course, there’s never one correct answer, and O’Sullivan gives empathetic consideration to both approaches.
And the most interesting part for me was actually how the diagnosis was made. O’Sullivan argues that no matter which fancy tools you have at your disposal, nothing can replace clinician’s judgment. The tests need to be interpreted in the light of the patient’s story, the clinical presentation. As tempting as it is to think that a blood test, a genetic test or a fancy MRI would give the most precise diagnosis, they also give you a lot of “noise�, a lot of information of dubious significance that we don’t know what to do with. There will be many “incidentalomas� � finings in tests that may or may not be contributing to any disease or pathology � that we don’t know what to do with and that are prone to cause needless anxiety. For instance, if a child presents with something different from the norm, gets a genetic test in hope that something pops up to explain what happening, and something if uncertain significance pops up, what do we do? Do we assume that an unclear finding is a culprit? And what if there’s no help available? What’s the point then?
“An expectation of constant good health, success and a smooth transition through life is met by disappointment when it doesn’t work out that way. Medical explanations have become the sticking plaster we use to help us manage that disappointment.�
This book can end up seeming contentious and polarizing and infuriating to those who may feel that O’Sullivan tries to invalidate their conditions and diagnoses. But she is not dismissive or flippant. Rather, she argues against bad science and overreliance on things we use but do not fully understand. She doesn’t fall into the seductive trap of offering simple answers and understands that there are several sides to most issues.
And although I don’t always agree with her, I appreciate that she made me think and reconsider some well-ingrained assumptions and misconceptions. Love it or hate it, this book will make you think.
4 stars.
March 19, 2025
Thanks to NetGalley for an advanced reader copy.
I wrote and rewrote this review, unsure of exactly how to phrase how angry I am about what I read and the harm it will do.
This book could cost people their lives, that’s not hyperbole, these diagnoses can be life saving for many people.
There are six chapters on different diagnoses, Huntington's Cancer Gene, ADHD, Depression And Neurodiversity, and Syndrome without a Name.
It's a bizarre collection, chronic illnesses, developmental disabilities, genetic disorders, cancer and conditions that are not diagnosis in the first place. Neither Neurodiversity nor Syndrome Without a Name are diagnoses, so I’m baffled as to why there in here.
The one thing many of these conditions have in common is they are not diagnosed by a blood test or scan but by asking questions and making a judgement call. O'Sullivan seems to believe this makes these diagnoses inherently unreliable, but this kind of diagnosis does require a level of competence and compassion that appears beyond Dr'O Sullivan.
She seems to have some bizarre ideas about how diagnosis works. She is under the impression that if you don't diagnose illnesses and disabilities they will just go away, that people will recover, which is so mind-numbingly baffling I don't understand how she got a medical degree!
She seems to think life with a diagnosis, and therefore one of the 16 million disabled people in the UK, cannot be as fulfilling as not having a diagnosis and therefore not being a disabled person. Honestly this suggests an issue with Dr O’Sullivan’s lack of imagination that with anyone receiving a diagnosis.
For most of the conditions in the book I can’t speak to what it’s like to be diagnosed with any of these conditions. I can when it comes to autism and ADHD. I also know what it’s like to not be diagnosed for several decades and I wouldn’t wish it on my worst enemy. I wouldn’t even wish it on Dr O’Sullivan.
Dr O’Sullivan’s grasp on what it’s like to have either of these conditions is slight. She appears not to understand that the spectrum does not run from mild to severe. Her examples for ‘mild� autism are wild: Bill Gates, Elon Musk, Anthony Hopkins, and Robbie Williams.
Ah yes, I’m sure the average neurodivergent adult in the UK lives just like they do. That’s feasible on Universal Credit! (The unemployment and poverty rates for both autism and ADHD are much higher than the general population, universal credit will be a reality for most).
The thing that came across in these chapters is she has no understanding of what it feels like to not understand how your brain works and that when you don’t understand that you try and make your brain work like everyone else’s or you try and pretend you do, this absolutely takes a toll.
But we live in a society where autism and ADHD have gone undiagnosed for decades in millions of people, there are many studies looking at the effects of late diagnosis. These have found not being diagnosed with autism and/or ADHD until adulthood can contribute to academic under achievement and educational problems, increased prevelance of anxiety and depression, higher rates offending behaviour and imprisonment, divorce, driving accidents, unemployment, suicidal thoughts and behaviours and other mental health issues, difficulties at work, substance abuse, increased medical incidents and injuries, chaotic home life, increased psychiatric conditions, social problems, increased vulnerability to sexual abuse in women, and chronic pain.
The thing this book doesn’t explain is what kind of doctor, even what kind of person thinks taking action so that these litany of issues don’t happen or are less severe, is a bad thing?
I wrote and rewrote this review, unsure of exactly how to phrase how angry I am about what I read and the harm it will do.
This book could cost people their lives, that’s not hyperbole, these diagnoses can be life saving for many people.
There are six chapters on different diagnoses, Huntington's Cancer Gene, ADHD, Depression And Neurodiversity, and Syndrome without a Name.
It's a bizarre collection, chronic illnesses, developmental disabilities, genetic disorders, cancer and conditions that are not diagnosis in the first place. Neither Neurodiversity nor Syndrome Without a Name are diagnoses, so I’m baffled as to why there in here.
The one thing many of these conditions have in common is they are not diagnosed by a blood test or scan but by asking questions and making a judgement call. O'Sullivan seems to believe this makes these diagnoses inherently unreliable, but this kind of diagnosis does require a level of competence and compassion that appears beyond Dr'O Sullivan.
She seems to have some bizarre ideas about how diagnosis works. She is under the impression that if you don't diagnose illnesses and disabilities they will just go away, that people will recover, which is so mind-numbingly baffling I don't understand how she got a medical degree!
She seems to think life with a diagnosis, and therefore one of the 16 million disabled people in the UK, cannot be as fulfilling as not having a diagnosis and therefore not being a disabled person. Honestly this suggests an issue with Dr O’Sullivan’s lack of imagination that with anyone receiving a diagnosis.
For most of the conditions in the book I can’t speak to what it’s like to be diagnosed with any of these conditions. I can when it comes to autism and ADHD. I also know what it’s like to not be diagnosed for several decades and I wouldn’t wish it on my worst enemy. I wouldn’t even wish it on Dr O’Sullivan.
Dr O’Sullivan’s grasp on what it’s like to have either of these conditions is slight. She appears not to understand that the spectrum does not run from mild to severe. Her examples for ‘mild� autism are wild: Bill Gates, Elon Musk, Anthony Hopkins, and Robbie Williams.
Ah yes, I’m sure the average neurodivergent adult in the UK lives just like they do. That’s feasible on Universal Credit! (The unemployment and poverty rates for both autism and ADHD are much higher than the general population, universal credit will be a reality for most).
The thing that came across in these chapters is she has no understanding of what it feels like to not understand how your brain works and that when you don’t understand that you try and make your brain work like everyone else’s or you try and pretend you do, this absolutely takes a toll.
But we live in a society where autism and ADHD have gone undiagnosed for decades in millions of people, there are many studies looking at the effects of late diagnosis. These have found not being diagnosed with autism and/or ADHD until adulthood can contribute to academic under achievement and educational problems, increased prevelance of anxiety and depression, higher rates offending behaviour and imprisonment, divorce, driving accidents, unemployment, suicidal thoughts and behaviours and other mental health issues, difficulties at work, substance abuse, increased medical incidents and injuries, chaotic home life, increased psychiatric conditions, social problems, increased vulnerability to sexual abuse in women, and chronic pain.
The thing this book doesn’t explain is what kind of doctor, even what kind of person thinks taking action so that these litany of issues don’t happen or are less severe, is a bad thing?
April 1, 2025
"Let's leave diagnosis for those who are unequivocally sick and find a way to be more tolerant of difference and imperfections that still allows people to live an unencumbered life." argues Suzanne O'Sullivan
Suzanne O'Sullivan has written an incredibly important book that is truly needed at this point in time. This is a book that questions society's need to label every individual who feels that their life and feelings and health don't fit a perceived norm. Everyone is demanding perfection of themselves.
The argument is clearly made that with so many being diagnosed of diseases/"disorders', it does not always lead to substantial improvements in longterm health.
Redrawing boundaries and redefining symptoms between sickness and health is impacting greatly on society.
Suzanne O'Sullivan draws our attention to the need for greater balance in diagnosis and treatment and how predictive medicine can advise people of potential health problems which may never occur or take many years to show but in the meantime lead to years of fear and waiting for symptoms. The book identifies that diagnoses have the power to create illness when there is no disease.
The book explores range of conditions; ADHD , autism, Long Covid, Huntingdon's disease.
Anecdotal stories from individuals explore the impact positive and negative of diagnosis. With the rise of genetic testing, she expresses concerns but also acknowledges benefits. But it is the lack of definitive evidence and stretching the borders of diagnosis that are truly put into the spotlight to make us question the broader individual and societal impact.
Suzanne O'Sullivan writes with compassion and challenge and ultimately wants the best care for all in society .
This is a powerful book- one you will need to talk about and reflect upon especially if you have family members with certain diagnosed conditions. This is a book that isn't against diagnosis but questions how diagnosis is made; the science and research behind the ever changing supposed symptoms /evidence which define a condition; how does society actually support the broader community after a diagnosis( if at all) ; the impact on individuals who are suffering extreme and hard symptoms of a condition and how the broadening of diagnoses is leading to diluting of funding and support for them; and the broad impaction lives by defining individuals with a "label "
Highly readable - a book that opens the door to a wider debate and challenges us to question all we may be told and the impact on ourselves and loved one.
This book will be put alongside Ultra Processed People as a must read of 2025
The final points that this book is written before the impact of AI on medicine and health care in the future certainly left me with an undercurrent of concern if diagnoses could be made via computer data, algorithms etc
Suzanne O'Sullivan has written an incredibly important book that is truly needed at this point in time. This is a book that questions society's need to label every individual who feels that their life and feelings and health don't fit a perceived norm. Everyone is demanding perfection of themselves.
The argument is clearly made that with so many being diagnosed of diseases/"disorders', it does not always lead to substantial improvements in longterm health.
Redrawing boundaries and redefining symptoms between sickness and health is impacting greatly on society.
Suzanne O'Sullivan draws our attention to the need for greater balance in diagnosis and treatment and how predictive medicine can advise people of potential health problems which may never occur or take many years to show but in the meantime lead to years of fear and waiting for symptoms. The book identifies that diagnoses have the power to create illness when there is no disease.
The book explores range of conditions; ADHD , autism, Long Covid, Huntingdon's disease.
Anecdotal stories from individuals explore the impact positive and negative of diagnosis. With the rise of genetic testing, she expresses concerns but also acknowledges benefits. But it is the lack of definitive evidence and stretching the borders of diagnosis that are truly put into the spotlight to make us question the broader individual and societal impact.
Suzanne O'Sullivan writes with compassion and challenge and ultimately wants the best care for all in society .
This is a powerful book- one you will need to talk about and reflect upon especially if you have family members with certain diagnosed conditions. This is a book that isn't against diagnosis but questions how diagnosis is made; the science and research behind the ever changing supposed symptoms /evidence which define a condition; how does society actually support the broader community after a diagnosis( if at all) ; the impact on individuals who are suffering extreme and hard symptoms of a condition and how the broadening of diagnoses is leading to diluting of funding and support for them; and the broad impaction lives by defining individuals with a "label "
Highly readable - a book that opens the door to a wider debate and challenges us to question all we may be told and the impact on ourselves and loved one.
This book will be put alongside Ultra Processed People as a must read of 2025
The final points that this book is written before the impact of AI on medicine and health care in the future certainly left me with an undercurrent of concern if diagnoses could be made via computer data, algorithms etc
March 9, 2025
4.5 rounded up. These are such contentious topics but what I enjoyed was how empathetically this was written. The purpose is not to deny that people are suffering but to question whether diagnoses, especially when the act of diagnosis is so subjective, will really help people. The question of how you define ‘help� is also talked about here which I appreciated.
The most interesting stuff for me was the preventative medicine aspects - trying to pre diagnose cancers and dementias seems like an obvious good thing. But she makes a compelling argument that we over diagnose disease for which there is biological evidence in our bid to anticipate it. The genetic sequencing stuff? Fascinating.
The most interesting stuff for me was the preventative medicine aspects - trying to pre diagnose cancers and dementias seems like an obvious good thing. But she makes a compelling argument that we over diagnose disease for which there is biological evidence in our bid to anticipate it. The genetic sequencing stuff? Fascinating.
March 24, 2025
I listened to the abridged version of this on BBC Sounds. It was excellent. The author explores topics such the diagnosis for Huntingdon’s Disease, Autism, Cancer and Long Covid. Each chapter is done in a very procedural way but which may not be popular with all readers. She is a courageous author and is quite forthright in her scepticism of over diagnosis. Fortunately her writing has much compassion and grace. It certainly made me think for a long time after I listened to these topics � and I learnt a great deal as well.
April 24, 2025
5 stars for educational intent, 3 stars for style and substance; the message is eminently worth sharing; in particular over-diagnosis (or diagnosis creep) can wreak havoc; medicine can indeed be co-opted into a personal or corporate weapon; on the topic of iatrogenesis be sure to check out the classic , and for psychiatry: .
March 20, 2025
The book covers important topics - what is overdiagnosis; is a diagnosis always a good thing; are we pathologizing anxiety; what are the dangers of overdiagnosis - particularly, changes in behaviours because of a diagnosis that then worsens or at least exacerbate the condition. The book raises some hard hitting questions - can we have a societal agreement on what constitutes normal behaviour, and there are some hard hitting truths ("Predictive diagnosis seems to intimidate people that should know better"). I agree with certain points on labelling. But while there can be evidence to support claims that retraining your brain works to address long term conditions such as fatigue and long covid, how such programmes can be rolled out on a global societal level, I am really not sure! Nevertheless, an important read!
March 24, 2025
“Diagnosis is an art and a science, but, surprising as it may sound to some, the art still takes precedence.�
It could be stated, I suppose, that this book makes a compelling argument that “the truth is overrated�... not an easy stance at all. And extremely problematic, obviously. Writing this book must have required immense courage, as it inevitably challenges deeply held beliefs and guarantees controversy.
When it comes to health, I suspect I’m not alone in feeling that if one is doing reasonably well, it may be wiser not to overanalyze—whether through rigorous exercise regimes, the latest dietary trends, or excessive medical consultations. In that light, The Age of Diagnosis reads almost like a quiet vindication. I don’t mind being approached by a doctor as someone capable of responsibility—as an adult able to weigh choices and consequences. But I also recognize how fraught these choices often are. Health is rarely a simple matter; it touches on life, death, the often ambiguous terrain of what we call quality of life... and the need to avoid being sued for malpractice.
“It’s complicated� is an understatement. Reading this book is a deeply rewarding experience—at least it was for me.
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Suggestions that predictive genetic testing should be dialled back or withheld until more is known and better systems are in place to support people can be met with accusations of paternalism. The argument is that people have the right to know more about their future health, if it can be known. But in our excitement to make the most of this new scientific capability and to allow people every choice, I cannot help but feel that a large part of the HD story isn’t being heard. I was very struck when Dr Tadros told me that, often, all she has to do is give people permission not to test. Many people’s first instinct is to assume that knowing is empowering and testing is the responsible thing to do, but one frank conversation with a genetic counsellor reveals that a large percentage of people do not want to risk a positive test hanging over them. They choose hope. Before testing is available to a great deal more people for many more conditions, there is a pressing need to find a better balance between protecting autonomy and protecting a person’s right not to know.
Much is rightly said about the struggle of living with undiagnosed symptoms. A diagnosis that explains symptoms usually comes as a relief. But that is not what predictive diagnosis does. It warns you about future symptoms. It doesn’t tell you when they will happen or how they will start, just that they probably will. Once you know those symptoms are on their way, you can’t un-know it. Before a diagnosis is confirmed, any future is still possible. After it is confirmed, the future is limited. Knowing for sure may prove to be more painful than uncertainty.
That the tests used to help diagnose Lyme disease can be tricky to interpret should not be seen to denigrate the extreme usefulness of tests but should rather help people to understand that tests alone cannot themselves make a diagnosis. Used alone, they can be uninterpretable and even misleading. Diagnosis is an art and a science, but, surprising as it may sound to some, the art still takes precedence. All tests have a false positive and a false negative rate, so a test that is done as a kind of sweeping diagnostic survey in a person with vague symptoms has a high chance of producing confusing results. If a doctor doesn’t know all the confounding variables that affect the test they have requested, they can easily give too much weight to an abnormal, or a normal, result. Frankly, it’s impossible for any doctor to know all the confounding variables for every test, so those requesting tests they don’t encounter every week can easily find themselves out of their depth. And doctors working with tests they do order every week can find themselves out of their depth too! As a neurologist, I send patients for MRI brain scans countless times a month, but I wouldn’t claim to know the meaning of every single tentatively ‘abnormal� finding. I am regularly handed a scan that shows something that may or may not be relevant to my patient. When that happens, only a discussion with colleagues and radiologists in which the patient’s story is given central position will resolve the dilemma.
The diagnostic criteria for autism have been steadily revised over eighty years and to change the phenotype further to pick up atypical presentations in women or milder cases is the most recent evolution. But diagnosis creep, the gradual expansion of diagnostic criteria, has to stop somewhere. There has to be a point at which a person who doesn’t have the right symptoms and behaviours, or enough of the right symptoms and behaviours, simply doesn’t have the diagnosis. But how can we know when that point has been reached? The answer should be simple in my view: when new people are being diagnosed but there is no evidence that it is benefitting them, or when the diagnosis is causing more harm than good. The purpose of diagnosing autism is to give people support that will help their social functioning. Medication is usually only used in those with severe autism who have significant behavioural problems. For the mildly affected, treatment, if needed at all, takes the form of social and educational accommodations, and psychological and behavioural interventions.
A person with severe or moderate autism stands to gain a lot from treatment and faces minimal harms from the diagnosis, given their degree of disability and unequivocal need for support. It is the mildly affected who have the least to gain and who are more vulnerable to harm. The problem that this group is facing is that there has been a lot of enthusiasm for making more autism diagnoses but not a great deal of scrutiny of the potential harms. (...) Baron-Cohen’s study is unique in being the only one to attract any such objection. Those objections did not come from individuals with severe autism or their families, but from the mild and masked group, many of whom, like Miles, also object to the use of the term ‘severe�. That cuts to the heart of my personal concern about the overdiagnosis trend in autism, which is the effect that overdiagnosis seems to be having on Kanner’s autistic children and on the adults with severe autism like those I look after. Those severely disabled people who could not live in the world without support. They are now in a queue for resources alongside people with considerably fewer difficulties. My patients with severe autism are not represented on TikTok, where people celebrate their great relief at being diagnosed and call for affirmative diagnosis and ask for words like ‘spectrum�, ‘disorder� and ‘impairment� to be removed from the language of autism. Those with the greatest need are becoming invisible.
As I write, new criteria are being drawn up to make autism a more available diagnosis for women. This work is being done before we have established whether diagnosing women with autism makes their lives better or worse. Those drawing up the new diagnostic criteria are the same people who publish research on autism, who run services for people with autism, whose careers, reputations and incomes will grow the more people with autism they find. That is not a good model for reframing diagnosis and it is a system in need of reform.
(...) BRCA variants are used to make a predictive diagnosis in healthy people before the disease has had time to develop. (...) a BRCA variant is only a risk factor. It increases the likelihood of certain cancers very significantly but still, not everybody who carries a cancer variant will get cancer. Different variants in BRCA come with a different degree of risk. Some are more deadly than others. Decades of experience of cancer genes has allowed geneticists to create risk prediction models for each of the thousands of variants. Approximately 12% of all women will get breast cancer in their lifetime. That increases to between 60% and 85% in women with certain BRCA1 variants and to between 40% and 65% in women with variants in BRCA2. Two per cent of women will get ovarian cancer in their lifetime. With high-risk variants in BRCA1 and BRCA2, that increases to 40�60% and 10�20% respectively. (...) Women known to carry a high-risk variant of BRCA have the option of taking action to prevent cancer. The foremost of those is risk-reducing surgery. That means having their healthy breasts, ovaries and fallopian tubes removed before cancer has a chance to take hold.
This is the most striking part of the cancer gene story for me—how new this science is and how little reliable information women have had to go on when making these enormous decisions. I have also been struck by how aggressively this problem has been addressed while we have waited for science to provide more definite answers. A woman’s risk of cancer is made using statistical models. But the most accurate statistical models of risk have only been available since 2017. Fifteen years ago, most women with BRCA1 variants were automatically advised they had a breast cancer risk of 85%, some of the worst odds. Since then, more testing in a broader range of people has led to a big improvement in prediction models, allowing more precise individualised odds. The steady rise in risk-reducing surgery began in the late 1990s, long before these individual risk profiles were devised. Many of those women given 85% odds of cancer fifteen years ago would be given a lower risk by current models. Which means more probably had surgery than needed it or would opt for it today.
To a hammer, everything looks like a nail. The specialist system makes it far too easy for a doctor to see a patient as a single body part. It also makes it easy to ignore all the other diagnoses our patients are accruing. Even when we do note the growing diagnosis list, we are disempowered from treating the patient as a whole. Specialists don’t question the practices of other specialists.
We need to learn to value the role of the generalist doctor once again. They have been somewhat sidelined by the view that specialists are the real experts. But specialists don’t always have the full panoramic view of the patient. The hospital generalist and the primary care doctor have that. They know their patients as a whole person.
»
It could be stated, I suppose, that this book makes a compelling argument that “the truth is overrated�... not an easy stance at all. And extremely problematic, obviously. Writing this book must have required immense courage, as it inevitably challenges deeply held beliefs and guarantees controversy.
When it comes to health, I suspect I’m not alone in feeling that if one is doing reasonably well, it may be wiser not to overanalyze—whether through rigorous exercise regimes, the latest dietary trends, or excessive medical consultations. In that light, The Age of Diagnosis reads almost like a quiet vindication. I don’t mind being approached by a doctor as someone capable of responsibility—as an adult able to weigh choices and consequences. But I also recognize how fraught these choices often are. Health is rarely a simple matter; it touches on life, death, the often ambiguous terrain of what we call quality of life... and the need to avoid being sued for malpractice.
“It’s complicated� is an understatement. Reading this book is a deeply rewarding experience—at least it was for me.
«
Suggestions that predictive genetic testing should be dialled back or withheld until more is known and better systems are in place to support people can be met with accusations of paternalism. The argument is that people have the right to know more about their future health, if it can be known. But in our excitement to make the most of this new scientific capability and to allow people every choice, I cannot help but feel that a large part of the HD story isn’t being heard. I was very struck when Dr Tadros told me that, often, all she has to do is give people permission not to test. Many people’s first instinct is to assume that knowing is empowering and testing is the responsible thing to do, but one frank conversation with a genetic counsellor reveals that a large percentage of people do not want to risk a positive test hanging over them. They choose hope. Before testing is available to a great deal more people for many more conditions, there is a pressing need to find a better balance between protecting autonomy and protecting a person’s right not to know.
Much is rightly said about the struggle of living with undiagnosed symptoms. A diagnosis that explains symptoms usually comes as a relief. But that is not what predictive diagnosis does. It warns you about future symptoms. It doesn’t tell you when they will happen or how they will start, just that they probably will. Once you know those symptoms are on their way, you can’t un-know it. Before a diagnosis is confirmed, any future is still possible. After it is confirmed, the future is limited. Knowing for sure may prove to be more painful than uncertainty.
That the tests used to help diagnose Lyme disease can be tricky to interpret should not be seen to denigrate the extreme usefulness of tests but should rather help people to understand that tests alone cannot themselves make a diagnosis. Used alone, they can be uninterpretable and even misleading. Diagnosis is an art and a science, but, surprising as it may sound to some, the art still takes precedence. All tests have a false positive and a false negative rate, so a test that is done as a kind of sweeping diagnostic survey in a person with vague symptoms has a high chance of producing confusing results. If a doctor doesn’t know all the confounding variables that affect the test they have requested, they can easily give too much weight to an abnormal, or a normal, result. Frankly, it’s impossible for any doctor to know all the confounding variables for every test, so those requesting tests they don’t encounter every week can easily find themselves out of their depth. And doctors working with tests they do order every week can find themselves out of their depth too! As a neurologist, I send patients for MRI brain scans countless times a month, but I wouldn’t claim to know the meaning of every single tentatively ‘abnormal� finding. I am regularly handed a scan that shows something that may or may not be relevant to my patient. When that happens, only a discussion with colleagues and radiologists in which the patient’s story is given central position will resolve the dilemma.
The diagnostic criteria for autism have been steadily revised over eighty years and to change the phenotype further to pick up atypical presentations in women or milder cases is the most recent evolution. But diagnosis creep, the gradual expansion of diagnostic criteria, has to stop somewhere. There has to be a point at which a person who doesn’t have the right symptoms and behaviours, or enough of the right symptoms and behaviours, simply doesn’t have the diagnosis. But how can we know when that point has been reached? The answer should be simple in my view: when new people are being diagnosed but there is no evidence that it is benefitting them, or when the diagnosis is causing more harm than good. The purpose of diagnosing autism is to give people support that will help their social functioning. Medication is usually only used in those with severe autism who have significant behavioural problems. For the mildly affected, treatment, if needed at all, takes the form of social and educational accommodations, and psychological and behavioural interventions.
A person with severe or moderate autism stands to gain a lot from treatment and faces minimal harms from the diagnosis, given their degree of disability and unequivocal need for support. It is the mildly affected who have the least to gain and who are more vulnerable to harm. The problem that this group is facing is that there has been a lot of enthusiasm for making more autism diagnoses but not a great deal of scrutiny of the potential harms. (...) Baron-Cohen’s study is unique in being the only one to attract any such objection. Those objections did not come from individuals with severe autism or their families, but from the mild and masked group, many of whom, like Miles, also object to the use of the term ‘severe�. That cuts to the heart of my personal concern about the overdiagnosis trend in autism, which is the effect that overdiagnosis seems to be having on Kanner’s autistic children and on the adults with severe autism like those I look after. Those severely disabled people who could not live in the world without support. They are now in a queue for resources alongside people with considerably fewer difficulties. My patients with severe autism are not represented on TikTok, where people celebrate their great relief at being diagnosed and call for affirmative diagnosis and ask for words like ‘spectrum�, ‘disorder� and ‘impairment� to be removed from the language of autism. Those with the greatest need are becoming invisible.
As I write, new criteria are being drawn up to make autism a more available diagnosis for women. This work is being done before we have established whether diagnosing women with autism makes their lives better or worse. Those drawing up the new diagnostic criteria are the same people who publish research on autism, who run services for people with autism, whose careers, reputations and incomes will grow the more people with autism they find. That is not a good model for reframing diagnosis and it is a system in need of reform.
(...) BRCA variants are used to make a predictive diagnosis in healthy people before the disease has had time to develop. (...) a BRCA variant is only a risk factor. It increases the likelihood of certain cancers very significantly but still, not everybody who carries a cancer variant will get cancer. Different variants in BRCA come with a different degree of risk. Some are more deadly than others. Decades of experience of cancer genes has allowed geneticists to create risk prediction models for each of the thousands of variants. Approximately 12% of all women will get breast cancer in their lifetime. That increases to between 60% and 85% in women with certain BRCA1 variants and to between 40% and 65% in women with variants in BRCA2. Two per cent of women will get ovarian cancer in their lifetime. With high-risk variants in BRCA1 and BRCA2, that increases to 40�60% and 10�20% respectively. (...) Women known to carry a high-risk variant of BRCA have the option of taking action to prevent cancer. The foremost of those is risk-reducing surgery. That means having their healthy breasts, ovaries and fallopian tubes removed before cancer has a chance to take hold.
This is the most striking part of the cancer gene story for me—how new this science is and how little reliable information women have had to go on when making these enormous decisions. I have also been struck by how aggressively this problem has been addressed while we have waited for science to provide more definite answers. A woman’s risk of cancer is made using statistical models. But the most accurate statistical models of risk have only been available since 2017. Fifteen years ago, most women with BRCA1 variants were automatically advised they had a breast cancer risk of 85%, some of the worst odds. Since then, more testing in a broader range of people has led to a big improvement in prediction models, allowing more precise individualised odds. The steady rise in risk-reducing surgery began in the late 1990s, long before these individual risk profiles were devised. Many of those women given 85% odds of cancer fifteen years ago would be given a lower risk by current models. Which means more probably had surgery than needed it or would opt for it today.
To a hammer, everything looks like a nail. The specialist system makes it far too easy for a doctor to see a patient as a single body part. It also makes it easy to ignore all the other diagnoses our patients are accruing. Even when we do note the growing diagnosis list, we are disempowered from treating the patient as a whole. Specialists don’t question the practices of other specialists.
We need to learn to value the role of the generalist doctor once again. They have been somewhat sidelined by the view that specialists are the real experts. But specialists don’t always have the full panoramic view of the patient. The hospital generalist and the primary care doctor have that. They know their patients as a whole person.
»
March 8, 2025
This was a really interesting and thought provoking audiobook. I have often wondered about over diagnosis, excessive / unnecessary medical screening, and the author discusses these issues so eloquently and in just the right depth. Recommended for anyone interested in the subject.
With grateful thanks to Hodder & Stoughton Audio and Suzanne O'Sullivan for my early copy of the audiobook in exchange for an honest review.
With grateful thanks to Hodder & Stoughton Audio and Suzanne O'Sullivan for my early copy of the audiobook in exchange for an honest review.
April 4, 2025
This is a very complicated subject with many nuances. This isn't a true review, more of bunch of a meandering thoughts.
I agree with some of it, some things I'm not so sure about. Like finding and treating cancer that was found so early, the body probably would've taken care of it by itself and thus the harrowing surgeries and chemo wasn't quite needed. I know that has happened, as I've read it in mutiple books and papers. Other bits I wasn't quite sure about. But I know I need to further research. I wish the book was longer as I feel this subject could easily be 500 pages, especially once you get into the nitty gritty and all the nuances.
It gives you a lot to think about. Personally as someone with a disease that causes chronic pain, I know my issues get worse the more I focus on them. I often see my constant pain as a radio that I am trying to tune out, I don't always succeed, especially on the horrible days, but distraction is my best friend and number one tip. With some sharp agonising pain, distraction won't work, but the pain you that constantly there, the ache, the deep ache, distraction can work. It's why I struggle with sleep as my brain tunes back into all the pain when I'm trying to evoke being unconscious, thus I am never comfy, but pain meds and CBD help. I also have a sleep trigger story that I made up that I only think about before I sleep. My brain knows that thinking of that story means it's time to sleep. But anyway, the more I focus on my health, every twinge of pain, the random pains, the dull constant ache, the worst I feel physically.
And I do understand that the people who have online pages about their diagnosis are only a small part of the diagnosis. Like people with level 3 autism aren't making tik toks of their own volition, therefore can easily be forgotten or ignored, as some may not be able to speak about their own needs. And I know it's very easy to take the label of whatever you have and make it one of your core identities. And avoid anything challenging or scary. Chronic illness can make your world very small and it's very hard to expand once that has happened. Deconditioning happens very easily and it is a bitch to undo, sometimes you never get back to before deconditioning even when it's possible. When you do have a diagnosis, some doors do get opened, but quite a few do get closed.
The brain is so powerful. It can completely warp your perception. There are many things we don't understand about it. So many unanswered questions. Mental health is intrinsically woven with physical health. Trauma can make you physically ill. I can understand why people need diagnosis, a lot of us have this innate desire to understand ourselves, and when you struggle with things that others find easy, it's very easy to think there is some defective about yourself and beat yourself up. Having a diagnosis can lead to understanding yourself and having empathy for yourself.
I found the chapter about Huntingdon's disease chapter really interesting. It was really interesting that the therapist says that she helps them to see that not testing is just as valid.
But yeah, it's all so complicated.
I agree with some of it, some things I'm not so sure about. Like finding and treating cancer that was found so early, the body probably would've taken care of it by itself and thus the harrowing surgeries and chemo wasn't quite needed. I know that has happened, as I've read it in mutiple books and papers. Other bits I wasn't quite sure about. But I know I need to further research. I wish the book was longer as I feel this subject could easily be 500 pages, especially once you get into the nitty gritty and all the nuances.
It gives you a lot to think about. Personally as someone with a disease that causes chronic pain, I know my issues get worse the more I focus on them. I often see my constant pain as a radio that I am trying to tune out, I don't always succeed, especially on the horrible days, but distraction is my best friend and number one tip. With some sharp agonising pain, distraction won't work, but the pain you that constantly there, the ache, the deep ache, distraction can work. It's why I struggle with sleep as my brain tunes back into all the pain when I'm trying to evoke being unconscious, thus I am never comfy, but pain meds and CBD help. I also have a sleep trigger story that I made up that I only think about before I sleep. My brain knows that thinking of that story means it's time to sleep. But anyway, the more I focus on my health, every twinge of pain, the random pains, the dull constant ache, the worst I feel physically.
And I do understand that the people who have online pages about their diagnosis are only a small part of the diagnosis. Like people with level 3 autism aren't making tik toks of their own volition, therefore can easily be forgotten or ignored, as some may not be able to speak about their own needs. And I know it's very easy to take the label of whatever you have and make it one of your core identities. And avoid anything challenging or scary. Chronic illness can make your world very small and it's very hard to expand once that has happened. Deconditioning happens very easily and it is a bitch to undo, sometimes you never get back to before deconditioning even when it's possible. When you do have a diagnosis, some doors do get opened, but quite a few do get closed.
The brain is so powerful. It can completely warp your perception. There are many things we don't understand about it. So many unanswered questions. Mental health is intrinsically woven with physical health. Trauma can make you physically ill. I can understand why people need diagnosis, a lot of us have this innate desire to understand ourselves, and when you struggle with things that others find easy, it's very easy to think there is some defective about yourself and beat yourself up. Having a diagnosis can lead to understanding yourself and having empathy for yourself.
I found the chapter about Huntingdon's disease chapter really interesting. It was really interesting that the therapist says that she helps them to see that not testing is just as valid.
But yeah, it's all so complicated.
April 4, 2025
I have a lot of mixed feelings about this book.
I read it because I thoroughly enjoyed her book “it’s all in your head� because I think she managed to discuss psychosomatic symptoms and functional disorders with an incredible amount of tact and was able to explain them in a way that didn’t feel dismissive towards the people suffering with functional disorders and symptoms. I did not get the same vibe from this book.
I agreed with some of the underlying principles Suzanne O’Sullivan mentions particularly in her conclusion about having a wider understanding of ‘normal� to avoid over-medicalising normal phenomena, and how sometimes watchful waiting is the best approach to certain health complaints.
I did find it interesting that numbers of severe cases of neuro developmental disorders (particularly autism and ADHD) are stable while the mild and moderate cases are increasing. I don’t think it’s necessarily a bad idea for more people to have an understanding of themselves. The solution should be an acceptance of variance, and not having these diagnoses seen as life limiting, or affecting people’s expectations of themselves and their life goals.
What I disagreed with wholeheartedly was the paternalistic conversation around doctors withholding information and diagnoses “if it offers the patient no benefit�. She also talks about people with autism and ADHD so severe that it’s undeniable being the only people who should get a diagnosis - it’s a little head in the sand for me. Undeniable to who exactly? And why should the doctor decide if it would be of benefit? They can’t look into a crystal ball. Even if there is no treatment, Suzanne O’Sullivan clearly views any sense of self acceptance and understanding, or finding a sense of community as “less than� benefits to something being treatable with medication.
Additionally she doesn’t seem to acknowledge the possibility that expanding diagnosis definitions over time as we learn more could be a good thing? In general in science and medicine a deeper and wider knowledge is a good thing; and there wasn’t much consideration that the first people to describe autism and ADHD may have only seen part of the puzzle, and with more knowledge and experience, we realise there are more people who need to be included.
I also think she did not handle some diagnoses with much tact - she essentially said POTS, H-EDS, long covid and chronic Lyme disease are fake. I think she made some compelling arguments about how there are seemingly disparate clusters of symptoms that were put together and how the labels/diagnostics aren’t fit for purpose. She acknowledged these people are suffering, but if I had any of those diagnoses, oof, I’d be fuming after reading this book.
Overall it’s a thought provoking read that offers some interesting takeaways as to how we view the role of doctors and how the definition what we think being healthy is has become narrower over time.
I just think a lot of her conclusions lack compassion and appreciation for open disclosure between patients and doctors.
I read it because I thoroughly enjoyed her book “it’s all in your head� because I think she managed to discuss psychosomatic symptoms and functional disorders with an incredible amount of tact and was able to explain them in a way that didn’t feel dismissive towards the people suffering with functional disorders and symptoms. I did not get the same vibe from this book.
I agreed with some of the underlying principles Suzanne O’Sullivan mentions particularly in her conclusion about having a wider understanding of ‘normal� to avoid over-medicalising normal phenomena, and how sometimes watchful waiting is the best approach to certain health complaints.
I did find it interesting that numbers of severe cases of neuro developmental disorders (particularly autism and ADHD) are stable while the mild and moderate cases are increasing. I don’t think it’s necessarily a bad idea for more people to have an understanding of themselves. The solution should be an acceptance of variance, and not having these diagnoses seen as life limiting, or affecting people’s expectations of themselves and their life goals.
What I disagreed with wholeheartedly was the paternalistic conversation around doctors withholding information and diagnoses “if it offers the patient no benefit�. She also talks about people with autism and ADHD so severe that it’s undeniable being the only people who should get a diagnosis - it’s a little head in the sand for me. Undeniable to who exactly? And why should the doctor decide if it would be of benefit? They can’t look into a crystal ball. Even if there is no treatment, Suzanne O’Sullivan clearly views any sense of self acceptance and understanding, or finding a sense of community as “less than� benefits to something being treatable with medication.
Additionally she doesn’t seem to acknowledge the possibility that expanding diagnosis definitions over time as we learn more could be a good thing? In general in science and medicine a deeper and wider knowledge is a good thing; and there wasn’t much consideration that the first people to describe autism and ADHD may have only seen part of the puzzle, and with more knowledge and experience, we realise there are more people who need to be included.
I also think she did not handle some diagnoses with much tact - she essentially said POTS, H-EDS, long covid and chronic Lyme disease are fake. I think she made some compelling arguments about how there are seemingly disparate clusters of symptoms that were put together and how the labels/diagnostics aren’t fit for purpose. She acknowledged these people are suffering, but if I had any of those diagnoses, oof, I’d be fuming after reading this book.
Overall it’s a thought provoking read that offers some interesting takeaways as to how we view the role of doctors and how the definition what we think being healthy is has become narrower over time.
I just think a lot of her conclusions lack compassion and appreciation for open disclosure between patients and doctors.
April 21, 2025
Humane and wise, this book questions overdiagnosis especially at the 'mild' end of several sprectra. Here, the questionable benefits of diagnosis are seldom weighed against the cost of pathologising and biologising tendencies of modern medicine and, by extension, society. There's a wide range of subjects discussed, illustrated by sympathetic telling of several case studies of her patients. She calls for fewer tests, fewer diagnosis. fewer specialists - and more time for the slow arts of healthcare to flourish, helping us to focus on what we can do rather than seeking medicalised labels to explain what we can't. Clear sighted and timely - I hope that this book is read widely by the public clamouring for tests and diagnoses as well as the medical professionals keen to provide them.
April 10, 2025
A thought-provoking book, written with compassion. It covers a wide range of medical and developmental conditions and explores the extent to which diagnoses of these conditions are helpful to the recipients. There are no easy answers in many of these cases. A diagnosis may be welcome, but in some circumstances it may come to define the recipient and lead them to put limits on what they are capable of doing. There is also an interesting discussion on whether quite unexceptional aspects of human life are being pathologised.
March 24, 2025
Much to think about. Thanks for the recommendation Debby.
April 6, 2025
Lots of good questions raised... I have often thought about how powerful our brains are, especially coupled with diagnoses of physical and/or mental health conditions. This dug into the topic a bit. I would love to see more books and/or research on the topic.
March 29, 2025
Every logical person has an intuitive understanding of everything mentioned in this book. But since we are not doctors and we understand our limits we are not sure if our intuitions are right. And expert doctors actively gaslit us into believing our intuitions are wrong because we don't know about these things, we are not experts.
This book is a doctor coming up and telling no, you guys are right, your intuition is on point and explaining it with her expertise about how we are right with data.
Only point of contention is, we think doctors do it because it's good business and they don't give a fuck if it's helpful or not. But her point is, doctors actually believe these things are helpful and it's not about money at all. I think here we might be wrong and she might be right. Doctors definitely believe what they are doing is right. And because of the arrogance of the "degree" and expertise they don't question it and obviously the money factor helps in not questioning it.
This book is a doctor coming up and telling no, you guys are right, your intuition is on point and explaining it with her expertise about how we are right with data.
Only point of contention is, we think doctors do it because it's good business and they don't give a fuck if it's helpful or not. But her point is, doctors actually believe these things are helpful and it's not about money at all. I think here we might be wrong and she might be right. Doctors definitely believe what they are doing is right. And because of the arrogance of the "degree" and expertise they don't question it and obviously the money factor helps in not questioning it.
March 28, 2025
Lots and lots to think about. Each one of O’Sullivan’s books has been thought-provoking, view-widening, empathetic, nuanced, and clear. This is clearly the most political or polemical perhaps of her books. Do I agree with absolutely everything on first read? No. Has it made me want to look up references to explore more, definitely reread in the future and in the meantime to talk more with others and think deeply about my own beliefs? Absolutely. I would say a must read for anyone interested in the modern age, science, health, brains, and how to live a good life.
November 30, 2024
*Thanks to NetGalley and the publisher for an advance reader copy of this novel in exchange for an honest review*.
The Age of Diagnosis discusses many conditions such as Huntington’s disease, Lyme disease, long Covid, cancer, autism and ADHD. The question of diagnosis is considered throughout with the idea that a diagnosis can be negative. Healthy people are turned into patients through genetic testing and diagnosis. Ultimately, a diagnosis changes over time to envelop more people and include more symptoms. This can be both negative and positive as seen by Autism with low and high functioning autistic people.
This was really good and I had a great time reading it. It opened my mind to things I hadn’t considered before and made me question things. My favourite parts were the discussion on autism, ADHD and Lyme disease. I personally do think we are going too far with medicine in science and this book illustrates that. For example, people who think they have Lyme disease but have never encountered the ticks or bacteria that leads to the disease. Plus this talked about the issue of paying for a diagnosis through private healthcare. I really agreed with the autism section on how the diagnosis has expanded so much to include high functioning people and people who cannot function on their own. This was really good and I think it’s an important read.
Favourite Quotes:
“There is no blood test or scan to diagnose autism. The diagnosis depends entirely on a societal agreement on what normal behaviour should look like, the observation of abnormal behaviour in an individual and that person's description of their internal experience. Diagnosis in general is fraught with error even when objective tests are involved, but now we enter the quagmire of trying to define and diagnose a condition for which there are no tests and absolutely no objective clinical signs.�
AND
“That cuts to the heart of my personal concern about the over-diagnosis trend in autism, which is the effect that overdiagnosis seems to be having on Kanner's autistic children and on the adults with severe autism like those I look after. Those severely disabled people who could not live in the world without support.
They are now in a queue for resources alongside people with considerably fewer difficulties. My patients with severe autism are not represented on TikTok, where people celebrate their great relief at being diagnosed and call for affirmative diagnosis and ask for words like 'spectrum', 'disorder' and 'impairment' to be removed from the language of autism. Those with the greatest need are becoming invisible.�
The Age of Diagnosis discusses many conditions such as Huntington’s disease, Lyme disease, long Covid, cancer, autism and ADHD. The question of diagnosis is considered throughout with the idea that a diagnosis can be negative. Healthy people are turned into patients through genetic testing and diagnosis. Ultimately, a diagnosis changes over time to envelop more people and include more symptoms. This can be both negative and positive as seen by Autism with low and high functioning autistic people.
This was really good and I had a great time reading it. It opened my mind to things I hadn’t considered before and made me question things. My favourite parts were the discussion on autism, ADHD and Lyme disease. I personally do think we are going too far with medicine in science and this book illustrates that. For example, people who think they have Lyme disease but have never encountered the ticks or bacteria that leads to the disease. Plus this talked about the issue of paying for a diagnosis through private healthcare. I really agreed with the autism section on how the diagnosis has expanded so much to include high functioning people and people who cannot function on their own. This was really good and I think it’s an important read.
Favourite Quotes:
“There is no blood test or scan to diagnose autism. The diagnosis depends entirely on a societal agreement on what normal behaviour should look like, the observation of abnormal behaviour in an individual and that person's description of their internal experience. Diagnosis in general is fraught with error even when objective tests are involved, but now we enter the quagmire of trying to define and diagnose a condition for which there are no tests and absolutely no objective clinical signs.�
AND
“That cuts to the heart of my personal concern about the over-diagnosis trend in autism, which is the effect that overdiagnosis seems to be having on Kanner's autistic children and on the adults with severe autism like those I look after. Those severely disabled people who could not live in the world without support.
They are now in a queue for resources alongside people with considerably fewer difficulties. My patients with severe autism are not represented on TikTok, where people celebrate their great relief at being diagnosed and call for affirmative diagnosis and ask for words like 'spectrum', 'disorder' and 'impairment' to be removed from the language of autism. Those with the greatest need are becoming invisible.�
February 16, 2025
As patients we now have access to so much more information and choices around our own health and medical care. But, this book challenges the presumption that diagnosis, or labelling something, is always a good thing. It raises many conundrums and dilemmas using real cases to illustrate the issues raised. Is it necessarily helpful to know you will get a debilitating illness if you have no symptoms of it now? Is the ability to seemingly detect signs of cancer much earlier leading to unnecessary treatment and surgery? Is the ability to self-diagnose and the broadening of definitions actually a dis-service rather than empowering?
This book was a fascinating read and helped to give a range of perspective on the value and challenges of the increasing ability to diagnose. I kept talking about this book as I was reading it as it challenged some of my own assumptions and expectations. A really thought-provoking read.
This book was a fascinating read and helped to give a range of perspective on the value and challenges of the increasing ability to diagnose. I kept talking about this book as I was reading it as it challenged some of my own assumptions and expectations. A really thought-provoking read.
Read
April 7, 2025Excellent book, though I can't say it challenged me too much in certain areas because it was sort of confirming my opinions. It did however, add a lot more nuance, understanding, and sympathy.
Of particular interest to me:
What is the actual role of a diagnosis? I always thought, no matter what, I'd want to know whatever it is that is wrong with me, but it's not so simple. Finding out that 90% of people with HD choose not to find out their diagnosis at the first meeting with a geneticist, really lead me to reflect on what it means to have such a thing hanging over your head.
What is the purpose of a diagnosis if there is no current treatment? I understand the feeling of clarity must be a relief, but then you still have to go on with life.
Statistics - frankly speaking I'm not literate enough mathematically to understand statistics, but I know they often open to interpretation, and the one about downs syndrome shocked me. Actually what shocked me more was you can terminate a baby with downs syndrome 1 day before birth? Wow.
I think the way medicine is structured currently also does few favours to those without an easy diagnosable illness. Why is support only guaranteed with a diagnosis? I imagine this is particularly worse in America where everything is insurance based.
The important distinction between misdiagnosis and overdiagnosis. It is not that these illnesses do not exist, but what is their purpose, especially as the boarders of definition continuously grow to encompass more and more people.
Of particular interest to me:
What is the actual role of a diagnosis? I always thought, no matter what, I'd want to know whatever it is that is wrong with me, but it's not so simple. Finding out that 90% of people with HD choose not to find out their diagnosis at the first meeting with a geneticist, really lead me to reflect on what it means to have such a thing hanging over your head.
What is the purpose of a diagnosis if there is no current treatment? I understand the feeling of clarity must be a relief, but then you still have to go on with life.
Statistics - frankly speaking I'm not literate enough mathematically to understand statistics, but I know they often open to interpretation, and the one about downs syndrome shocked me. Actually what shocked me more was you can terminate a baby with downs syndrome 1 day before birth? Wow.
I think the way medicine is structured currently also does few favours to those without an easy diagnosable illness. Why is support only guaranteed with a diagnosis? I imagine this is particularly worse in America where everything is insurance based.
The important distinction between misdiagnosis and overdiagnosis. It is not that these illnesses do not exist, but what is their purpose, especially as the boarders of definition continuously grow to encompass more and more people.
This entire review has been hidden because of spoilers.
April 9, 2025
Excellent, thought provoking and challenging. Scope creep is an issue I think about a lot at work but the creep of diagnosis and the impact of this is not something I'd considered before. It definitely caused some chapeters to ring alarm bells for me. This was emphasised for me as I remembered my experience working people experiencing mental health challenges. That was a group so invested in their identity as Mental Health service users they were terrified of loosing the service that defined them. Despite many of them seeming to have significantly better mental health than I and many of the other teachers I'd spent the previous few years working with. Add the nocebo effect into the mix and I can see why this book has come about.
I also see why some people will be very angry at it. I don't know if we are ready to move on from the "divide everyone into broken tribes" individualistic culture but I hope this is the start of this process. I do not think it is denying anyone's life experiences but I have seen reviews that say otherwise. If it leads to more people considering how a diagnosis/treatment will impact them before they take the plunge I think it's a good start.
I also see why some people will be very angry at it. I don't know if we are ready to move on from the "divide everyone into broken tribes" individualistic culture but I hope this is the start of this process. I do not think it is denying anyone's life experiences but I have seen reviews that say otherwise. If it leads to more people considering how a diagnosis/treatment will impact them before they take the plunge I think it's a good start.
March 26, 2025
Well this book had my brain juices flowing and was utterly thought provoking.
Suzanna discusses conditions such as Huntington’s Disease, Lyme Disease, Long Covid, Cancer, Autism and ADHD and how over diagnosis, over medicating and over testing is causing, in many cases, more harm than good and how the attention needs to be focused on creating a better balance in diagnosis and treatments.
For each condition, Suzanna shares individuals stories, which explore both the positives and negatives to such diagnosis. Her discussion on unregulated Genetic Testing I found truly eye opening and also how social media has a part to play in this issue too.
There is just so much packed into the book and to think about, I truly can’t capture it all in this review - so please, go and give it a read and I would love to hear your thoughts.
I will however leave you with this quote;
💬 “An expectation of constant good health, graceful ageing and an obedient body and mind has left people unprepared for those ordinary bodily declines that affect us all. But I worry most about young people, in a culture that expects success and physical perfection, diagnosis has become a means to account for anything less. Success is not achievable every single time for everyone. A culture of telling people they will get there if they just keep trying isn’t fair on everybody. Every single person cannot achieve their most desired goals and we could be a great deal kinder to ourselves and our children if we learnt to recognise the point that which we are best advised to readjust our expectations. We would be happier if we learnt to better see our real strengths. Sometimes the thing you want to be good at, isn’t the thing you’re really good at. Medical diagnosis has been co-opted to help people deal with these frustrations, but I fear that perpetuates failure and sadness, rather than allowing that to be processed and left behind.�
Thank-you so much @netgalley @hodderbooks and Suzanne for an Audio Advanced Readers Copy, in exchange for an honest review.
Suzanna discusses conditions such as Huntington’s Disease, Lyme Disease, Long Covid, Cancer, Autism and ADHD and how over diagnosis, over medicating and over testing is causing, in many cases, more harm than good and how the attention needs to be focused on creating a better balance in diagnosis and treatments.
For each condition, Suzanna shares individuals stories, which explore both the positives and negatives to such diagnosis. Her discussion on unregulated Genetic Testing I found truly eye opening and also how social media has a part to play in this issue too.
There is just so much packed into the book and to think about, I truly can’t capture it all in this review - so please, go and give it a read and I would love to hear your thoughts.
I will however leave you with this quote;
💬 “An expectation of constant good health, graceful ageing and an obedient body and mind has left people unprepared for those ordinary bodily declines that affect us all. But I worry most about young people, in a culture that expects success and physical perfection, diagnosis has become a means to account for anything less. Success is not achievable every single time for everyone. A culture of telling people they will get there if they just keep trying isn’t fair on everybody. Every single person cannot achieve their most desired goals and we could be a great deal kinder to ourselves and our children if we learnt to recognise the point that which we are best advised to readjust our expectations. We would be happier if we learnt to better see our real strengths. Sometimes the thing you want to be good at, isn’t the thing you’re really good at. Medical diagnosis has been co-opted to help people deal with these frustrations, but I fear that perpetuates failure and sadness, rather than allowing that to be processed and left behind.�
Thank-you so much @netgalley @hodderbooks and Suzanne for an Audio Advanced Readers Copy, in exchange for an honest review.
March 19, 2025
gave me a lot to think about
April 16, 2025
Some very interesting concepts mixed in with a lot of seemingly dismissive content. Makes me wonder if the author had viable concerns for certain genetic conditions if she would be so flippant in her assessment. I agree with a lot of what she wrote but some of it bordered on blatant disregard for the patient.
April 11, 2025
While the book raises interesting questions about diagnosis, its handling of long Covid and related conditions is a case of a specialist speaking outside of their field and risks doing real harm when we are still searching for answers. Beware anyone who claims they have these answers and cherry picks their evidence to give a false impression of certainty. Dr O'Sullivan claims that the majority of Long Covid patients have a psychosomatic disorder, and as things stand there's a great deal of research out there that contradicts these claims.
April 3, 2025
As a medical professional, and someone with personal family experience of ADHD, I found this book equally fascinating and upsetting.
There is absolutely an issue with over diagnosis and pathologising normal human experience. In addition I believe that financial inequality and lifestyle issues need to be addressed at a societal level to improve mental health outcomes. However, to then dismiss a huge amount of genuine sufferers because there is not a test to prove their illness, or to dismiss that patients feel better because it can’t be measured is harmful.
I loved her other book, think she writes very well and I actually agree with a lot of what she says. However, she cannot be an expert in genomics, epigenetics, cancer screening, autism, ADHD, Lyme disease, long covid and fibromyalgia. In this book she seems too happy to dismiss other experts and I suspect there is significant bias in the references she quotes.
There is absolutely an issue with over diagnosis and pathologising normal human experience. In addition I believe that financial inequality and lifestyle issues need to be addressed at a societal level to improve mental health outcomes. However, to then dismiss a huge amount of genuine sufferers because there is not a test to prove their illness, or to dismiss that patients feel better because it can’t be measured is harmful.
I loved her other book, think she writes very well and I actually agree with a lot of what she says. However, she cannot be an expert in genomics, epigenetics, cancer screening, autism, ADHD, Lyme disease, long covid and fibromyalgia. In this book she seems too happy to dismiss other experts and I suspect there is significant bias in the references she quotes.
March 21, 2025
Listened to radio 4 reading of this probably abridged...very interesting Def has something to say
March 21, 2025
This book gave me a lot to think about. I already had some concerns about overdiagnosis in western society specifically after a situation with one of my children and after watching a few different friends go through things.
On the one hand information is good, Dr. O’Sullivan points out how we can better accommodate our children and take better care of ourselves with more information. But she also shows how early screen isn’t always beneficial which I’ve witnessed this personally. Early intervention/detection is a decision each person must make on their own and tell their doctor which way they lean so they can be better supported.
One thing that I had never thought about is how mild and severe conditions get lumped together with the same diagnosis. I don’t think this is helpful for anyone. Just because condition is mild doesn’t mean that it doesn’t cause problems, but it’s also isn’t fair to those with a severe version of the same condition.
Overall I don’t think Dr. O’Sullivan is going to change minds of people that are very pro- or anti- diagnosis. If you are on the fence or unsure, some of her information could be very helpful.
On the one hand information is good, Dr. O’Sullivan points out how we can better accommodate our children and take better care of ourselves with more information. But she also shows how early screen isn’t always beneficial which I’ve witnessed this personally. Early intervention/detection is a decision each person must make on their own and tell their doctor which way they lean so they can be better supported.
One thing that I had never thought about is how mild and severe conditions get lumped together with the same diagnosis. I don’t think this is helpful for anyone. Just because condition is mild doesn’t mean that it doesn’t cause problems, but it’s also isn’t fair to those with a severe version of the same condition.
Overall I don’t think Dr. O’Sullivan is going to change minds of people that are very pro- or anti- diagnosis. If you are on the fence or unsure, some of her information could be very helpful.
April 8, 2025
Very Flawed (a detailed review from an autistic point of view)
I appreciate Dr. O’Sullivan including so many talks with patients, as it adds their own feelings and views, which she seems curious and inquisitive about. But unfortunately, it is clear that she has several misunderstandings about autism, late-diagnosis, and neurodiversity. (a word she implies is communist-like, what other reason does one bring up Animal Farm? I question the value of such unnecessary and inflammatory rhetoric.)
I am writing as a late-diagnosed autistic, and I can confidently say only outside observers, not the groups she talks about, will be fully satisfied by this work. I do not have high support needs but I am not “mildly� affected either. My quality of life was the lowest when I had no diagnosis, no answers.
On the playground, I would mainly just stand to the side of everyone and stare or run around in circles by myself. When my mother expressed concerns about how I didn’t interact with others normally, my teachers said “my daughter was shy too, kids often are, she’ll grow out of it.� And that was the end of the conversation. If I got too overwhelmed with homework, I would begin to hyperventilate and rock back and forth. After that, sometimes I could scream and cry for hours, unable to calm down or stop, however desperately I wanted to. Everyone my mother consulted about this thought she was over-exaggerating. Though, she never thought I could be autistic either. I did everything I could to hide traits in public, but I even had a couple meltdowns at school. (Though not screaming kinds.)
Dr. O’Sullivan believes if your autistic traits go hidden or unnoticed, it is so insignificant that getting a diagnosis is questionable. According to her, my autism is “so minimal� because it was noticed late in life. Do you see the problem with this reasoning? Assuming late-diagnosed people must be very mild cases is a one-dimensional, flawed view. Even though many of my traits were obvious despite my attempts at masking, others were still ignorant of what they were. People like me are overlooked commonly; I am not some wild outlier.
It’s important to make clear that when we point out some forms of autism must be analyzed (or “scrutinized�) to see clearly, we are mainly referring to the lack of the general public’s awareness on autism, not that the traits are practically non-existent.
How she argues against the concept of female autism presenting differently is misleading at best. She says it is sensible to think some traits would present differently in girls, and uses very stereotypical examples of special interests. However, she thinks the claim that autistic girls tend to be more social than autistic boys “fundamentally changes the description of autism.� It absolutely does not.
It seems as though she’s working off of the outdated idea (from a very small 1943 study, of all things) that autistic people always are less social, or have no friends. This is simply an unfortunate and inaccurate stereotype. The current criteria mention social deficits, including the possibility of trouble maintaining or having relationships, but this is not a requirement, only an example of how it can manifest. I, for one, happened to not be very social. But now, I know many outgoing autistic people, and I love making new friends.
Saying autistic girls are often more social does not challenge the fundamental description of autism, it challenges a very old and obviously incomplete view of it.
Dr. O’Sullivan claims there is no benefit to rising diagnosis of autism, then cites a slew of random worsening mental health statistics of the world as proof. While it’s certainly hard to measure something that complex, I’m deeply disappointed by this vast oversimplification and grabbing at other statistics that don’t clearly have any correlation. These values could mean so many other different things I seriously wonder why on earth they were included in this way for the chapter.
The only thing I wholeheartedly agree with Dr. O’Sullivan on is as milder cases of everything are diagnosed and talked about more, the people who have higher support needs are being left behind and not represented. There is absolutely something to be said about this.
Moving on to her ADHD/depression/neurodiversity chapter, (side note, mental illness is not the same thing as neurodiversity) I am troubled by her speaking against affirming groups. She compares a story of someone’s physical infection recovery with a recovery from ADHD, as though they are remotely comparable. (Probably because she doesn’t believe ADHD is a real thing.) She has such a dismal view on the “medical problem� of being neurodivergent, and that it is something to escape from, plausible to rid yourself of it. If all people with ADHD or autism thought like she did, they absolutely would have negative views of themselves and damaged identities.
Considering that so many of us late-diagnosed people have loathed and blamed ourselves for so long, treating both ourselves and our experience with more acceptance is often the first step toward living a happier life. Forming groups is a great way to do that. Her saying “we all have to grow up� in dismissal of that is incredibly patronizing.
These affirming groups are often the only areas of a person’s life that actively allow differences to be expressed. As she knows, we experience more challenges by default. After a lifetime of being told it’s wrong to be different, joining a group that embraces or is okay with harmless differences isn’t suddenly going to give us an unchallenging life.
The place I go to for occupational therapy is affirming, and allowing children (or adults) to unmask can be through something as harmless as allowing them to stim, instead of forcing them to pent up their energy and emotions just so they can look normal. But it is clear that being normal is the most important thing, no matter the cost.
And now we come to her political coup de grâce of misinterpretations, the words neurotypical and neurodiverse. “The division of people into typical and diverse immediately contradicts the sensible statement that we are all different. It brings to mind George Orwell’s Animal Farm, where the pigs decide all animals are equal but some animals are more equal than others.� This is a fundamental misunderstanding, and it seems intentionally controversial. Since Dr. O’Sullivan does not understand the meaning of the terms neurotypical and neurodiverse and why they are helpful, I will explain.
Just the word “diverse� by itself here does not capture the full meaning that “neurodiverse� does, and it’s misleading to treat them as interchangeable to prove a point. It might have made for a more powerful sentence, but in reality, no one in these communities just say “diverse� or “typical�; using that takes on an entirely different meaning. The division absolutely is contradictory if we pedantically dilute the terms in this way.
With the word neurotypical, the primary use is not meant to imply that one group is all the same, but they share the specific aspect of not having conditions. So, they are called neurotypical because they are non-autistic, non-ADHD, non-dyslexic, etc. Neurodiverse and neurodivergent serve to highlight the differences in brains that population embodies. If they were literally implying only they as a group possess diversity when others don’t, of course that would be absurd. But they do tend to be more different, so people with those conditions perfectly demonstrate the concept of neurodiversity.
Some peoples� brains are more different than others�. Saying “we are all different� is true, but people are different to varying degrees in this specific context. The very concept of being different relies on there being an established standard. There absolutely are standardized ways of socialization, expression, processing, etc, things that most neurotypical people represent.
This is not synonymous with and should not be compared to fundamental equality, in which everyone is the same in regard to the value of their life and rights. Giving focus to marginalized people who are especially different doesn’t take away from the general population.
Dr. O’Sullivan implies that because everyone has differences, it’s wrong to say one group has more than the other. Then, how is that view more accepting of differences when it’s acknowledging them less? It is in fact actively reducing differences we have.
One last thing, she brings up the aspect of self-acceptance with diagnosis but it is not very important to her, who looks for things like work successes and "ambitions" as proof of a good life. As someone who spent nearly their entire life loathing themselves because they had no answers to why they were different, I can tell you what it means: everything. Self-loathing is quite powerful, and no diagnosis would limit me more than that.
I appreciate Dr. O’Sullivan including so many talks with patients, as it adds their own feelings and views, which she seems curious and inquisitive about. But unfortunately, it is clear that she has several misunderstandings about autism, late-diagnosis, and neurodiversity. (a word she implies is communist-like, what other reason does one bring up Animal Farm? I question the value of such unnecessary and inflammatory rhetoric.)
I am writing as a late-diagnosed autistic, and I can confidently say only outside observers, not the groups she talks about, will be fully satisfied by this work. I do not have high support needs but I am not “mildly� affected either. My quality of life was the lowest when I had no diagnosis, no answers.
On the playground, I would mainly just stand to the side of everyone and stare or run around in circles by myself. When my mother expressed concerns about how I didn’t interact with others normally, my teachers said “my daughter was shy too, kids often are, she’ll grow out of it.� And that was the end of the conversation. If I got too overwhelmed with homework, I would begin to hyperventilate and rock back and forth. After that, sometimes I could scream and cry for hours, unable to calm down or stop, however desperately I wanted to. Everyone my mother consulted about this thought she was over-exaggerating. Though, she never thought I could be autistic either. I did everything I could to hide traits in public, but I even had a couple meltdowns at school. (Though not screaming kinds.)
Dr. O’Sullivan believes if your autistic traits go hidden or unnoticed, it is so insignificant that getting a diagnosis is questionable. According to her, my autism is “so minimal� because it was noticed late in life. Do you see the problem with this reasoning? Assuming late-diagnosed people must be very mild cases is a one-dimensional, flawed view. Even though many of my traits were obvious despite my attempts at masking, others were still ignorant of what they were. People like me are overlooked commonly; I am not some wild outlier.
It’s important to make clear that when we point out some forms of autism must be analyzed (or “scrutinized�) to see clearly, we are mainly referring to the lack of the general public’s awareness on autism, not that the traits are practically non-existent.
How she argues against the concept of female autism presenting differently is misleading at best. She says it is sensible to think some traits would present differently in girls, and uses very stereotypical examples of special interests. However, she thinks the claim that autistic girls tend to be more social than autistic boys “fundamentally changes the description of autism.� It absolutely does not.
It seems as though she’s working off of the outdated idea (from a very small 1943 study, of all things) that autistic people always are less social, or have no friends. This is simply an unfortunate and inaccurate stereotype. The current criteria mention social deficits, including the possibility of trouble maintaining or having relationships, but this is not a requirement, only an example of how it can manifest. I, for one, happened to not be very social. But now, I know many outgoing autistic people, and I love making new friends.
Saying autistic girls are often more social does not challenge the fundamental description of autism, it challenges a very old and obviously incomplete view of it.
Dr. O’Sullivan claims there is no benefit to rising diagnosis of autism, then cites a slew of random worsening mental health statistics of the world as proof. While it’s certainly hard to measure something that complex, I’m deeply disappointed by this vast oversimplification and grabbing at other statistics that don’t clearly have any correlation. These values could mean so many other different things I seriously wonder why on earth they were included in this way for the chapter.
The only thing I wholeheartedly agree with Dr. O’Sullivan on is as milder cases of everything are diagnosed and talked about more, the people who have higher support needs are being left behind and not represented. There is absolutely something to be said about this.
Moving on to her ADHD/depression/neurodiversity chapter, (side note, mental illness is not the same thing as neurodiversity) I am troubled by her speaking against affirming groups. She compares a story of someone’s physical infection recovery with a recovery from ADHD, as though they are remotely comparable. (Probably because she doesn’t believe ADHD is a real thing.) She has such a dismal view on the “medical problem� of being neurodivergent, and that it is something to escape from, plausible to rid yourself of it. If all people with ADHD or autism thought like she did, they absolutely would have negative views of themselves and damaged identities.
Considering that so many of us late-diagnosed people have loathed and blamed ourselves for so long, treating both ourselves and our experience with more acceptance is often the first step toward living a happier life. Forming groups is a great way to do that. Her saying “we all have to grow up� in dismissal of that is incredibly patronizing.
These affirming groups are often the only areas of a person’s life that actively allow differences to be expressed. As she knows, we experience more challenges by default. After a lifetime of being told it’s wrong to be different, joining a group that embraces or is okay with harmless differences isn’t suddenly going to give us an unchallenging life.
The place I go to for occupational therapy is affirming, and allowing children (or adults) to unmask can be through something as harmless as allowing them to stim, instead of forcing them to pent up their energy and emotions just so they can look normal. But it is clear that being normal is the most important thing, no matter the cost.
And now we come to her political coup de grâce of misinterpretations, the words neurotypical and neurodiverse. “The division of people into typical and diverse immediately contradicts the sensible statement that we are all different. It brings to mind George Orwell’s Animal Farm, where the pigs decide all animals are equal but some animals are more equal than others.� This is a fundamental misunderstanding, and it seems intentionally controversial. Since Dr. O’Sullivan does not understand the meaning of the terms neurotypical and neurodiverse and why they are helpful, I will explain.
Just the word “diverse� by itself here does not capture the full meaning that “neurodiverse� does, and it’s misleading to treat them as interchangeable to prove a point. It might have made for a more powerful sentence, but in reality, no one in these communities just say “diverse� or “typical�; using that takes on an entirely different meaning. The division absolutely is contradictory if we pedantically dilute the terms in this way.
With the word neurotypical, the primary use is not meant to imply that one group is all the same, but they share the specific aspect of not having conditions. So, they are called neurotypical because they are non-autistic, non-ADHD, non-dyslexic, etc. Neurodiverse and neurodivergent serve to highlight the differences in brains that population embodies. If they were literally implying only they as a group possess diversity when others don’t, of course that would be absurd. But they do tend to be more different, so people with those conditions perfectly demonstrate the concept of neurodiversity.
Some peoples� brains are more different than others�. Saying “we are all different� is true, but people are different to varying degrees in this specific context. The very concept of being different relies on there being an established standard. There absolutely are standardized ways of socialization, expression, processing, etc, things that most neurotypical people represent.
This is not synonymous with and should not be compared to fundamental equality, in which everyone is the same in regard to the value of their life and rights. Giving focus to marginalized people who are especially different doesn’t take away from the general population.
Dr. O’Sullivan implies that because everyone has differences, it’s wrong to say one group has more than the other. Then, how is that view more accepting of differences when it’s acknowledging them less? It is in fact actively reducing differences we have.
One last thing, she brings up the aspect of self-acceptance with diagnosis but it is not very important to her, who looks for things like work successes and "ambitions" as proof of a good life. As someone who spent nearly their entire life loathing themselves because they had no answers to why they were different, I can tell you what it means: everything. Self-loathing is quite powerful, and no diagnosis would limit me more than that.
March 23, 2025
“In seeking explanations we are seeking labels� falling into the trap of medicalisation�
Thank you Hodder & Stoughton Audio for this ARC. This was very thought provoking and well informed. It presented a well balanced argument exploring the pros and cons of diagnosis - both health and psychological disorders. It explored the need for being well informed and to always question the messages given to us by society and medical professionals, if it doesn’t sit right, as it is clear that medicine and research is always changing and evolving. Overall, this book will be a great addition to the wider commentary treatment strategies, objective assessments and “to diagnose or not to diagnose that is the question!�
Thank you Hodder & Stoughton Audio for this ARC. This was very thought provoking and well informed. It presented a well balanced argument exploring the pros and cons of diagnosis - both health and psychological disorders. It explored the need for being well informed and to always question the messages given to us by society and medical professionals, if it doesn’t sit right, as it is clear that medicine and research is always changing and evolving. Overall, this book will be a great addition to the wider commentary treatment strategies, objective assessments and “to diagnose or not to diagnose that is the question!�
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