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Share your dilemmas and get honest opinions from other Mumsnetters.

Who's read 'Age of Diagnosis' (overdiagnosis in Long Covid, ADHD, Lymes, autism, cancer screening)

437 replies

FrodoBiggins · 27/05/2025 23:42

Inspired by another thread, has anyone read/ listened to Suzanne O’Sullivan's new book Age of Diagnosis? I just finished it and found it so interesting. She's a high profile consultant neurologist.

Touches on Long Covid, Autism, ADHD, Lymes disease (all in terms of diagnostic debates) and also Huntingdons genetic testing and Cancer/ Alzheimers screening (along what benefits there are of knowing of a risk/ certainty of future illness, especially if there is no cure).

I'll quote from a review:

"in her outstanding new book O’Sullivan offers a third possibility; that variance in bodily and mental health is being unnecessarily medicalised and pathologised:We are not getting sicker – we are attributing more to sickness.”
She describes a trinity of “overs”. Overdiagnosis, where a medical problem is treated when treatment might not be needed; overmedicalisation, where non-medical behaviours are turned into the business of doctors; and underlying both, overdetection: we are ever better at identifying signals of disease, sometimes earlier than necessary, when those indicators may not end up presaging the disease itself. Alongside balanced analysis of the epidemiological data on prostate and breast cancer, O’Sullivan examines the growth in behavioural conditions such as autism and ADHD. The tone is not sneering or dismissive, as debunkings of bad science so often can be. O’Sullivan is instead full of compassion, care and grace."

I believe it was also the Radio 4 Book of the Week. The full review quoted from above is here: https://www.theguardian.com/books/2025/mar/12/the-age-of-diagnosis-by-suzanne-osullivan-review-do-no-harm?CMP=Share_AndroidApp_Other

Has anyone else read it? Thoughts?

The Age of Diagnosis by Suzanne O’Sullivan review – do no harm

A doctor’s brilliant study of the dangers of overdiagnosis, from ADHD to long Covid

https://www.theguardian.com/books/2025/mar/12/the-age-of-diagnosis-by-suzanne-osullivan-review-do-no-harm?CMP=Share_AndroidApp_Other

OP posts:
minnienono · 28/05/2025 08:43

I’ve read the previous one. A friend in research in on a project looking at just this and it’s something I’ve been thinking about for years. It’s not that you don’t have x or y from a clinical standpoint it is that “identifying as that” isn’t necessarily helpful and at worst limiting your life and affecting mental health. I see it in a lady who identifies as autistic, only for last 2 years, now whether she is is not the point, it’s that her self diagnosis has taken over her life, become an obsession and is limiting her because she can no longer do things because of asd (that she did for the first 50 years of her life) and worst of all she uses it as an excuse for rude behaviour, I’ve stepped back after knowing her 20 years

GarlicPile · 28/05/2025 08:44

For all those saying it’s society’s “fault” for not being accommodating enough, how would you have it change to accommodate absolutely everyone? I’m genuinely interested

@Sammii82 - Society's getting less flexible, I believe. We increasingly need to classify everything in tightly-defined categories. It's probably not coincidental that this is how computers need data to be organised: 'fuzzy logic' is a popular concept that literally can't be performed by machines; they can only emulate it by processing very many tight definitions and collating the result into something that looks like comprehension.

Fuzzy logic is, however, what human minds do incredibly well: we are flexible, capable of observing patterns and updating our observations on the fly, naturally aware of grey areas and highly adaptive. Creative, adaptive, fuzzy behaviours are anathema to data processing, so they are being defined and filtered. Hence the need for increasingly detailed descriptions and classifications of more and more aspects of human life.

I'm neither a medic nor overly interested in the matter of medicalisation, but can offer concrete examples from my own experience.

I'm 70. I have several diagnosed chronic conditions, one of which is ME-CFS. That's a diagnosis of exclusion and, since it has no known cure (or even cause), is a proper dustbin. In the 1980s I called it 'yuppie flu' and said it was an imaginary illness. Everybody did. All of my symptoms were attributed to depression for about 15 years, which led me to do ever more exercise. I pushed myself until I was developing all sorts of strange symptoms, passing out in the gym - and was given stronger antidepressants, with encouragement to keep up the exercise. Because fitness fights fatigue, right? Half of ME-CFS sufferers are eventually diagnosed by psychiatrists, as I was.

I'm still on the pills (being permanently ill and exhausted is depressing!) but the point of my 'journey' is that the need to apply a diagnosis led directly to behaviour that worsened the condition. In earlier times - up to and including my own childhood - this condition was known by vague names such as nervous exhaustion. Treatment, for those who could afford it, was a long stay at a country retreat, where gentle walks and mineral baths soothed the tired 'nerves' while regular meals and plenty of rest fortified the body. This kind of fuzzy thinking would've benefited me no end, quite possibly preventing the decline that has left me seriously disabled.

My brother and I are certain that we have dyspraxia and ADHD. Neither of us will seek diagnosis because it won't make any difference at our age. We can clearly see how we fit into these 'boxes' - failed schooling when we'd been pegged as shoo-ins for Oxbridge; endless weird travelling experiences because we couldn't figure out what to do with ourselves; the kind of erratic timekeeping that makes Mumsnetters spew hatred; so much more!

One might wonder how either of us managed to have the very successful careers we achieved, given our chaotic natures. Easy: we did jobs that needed creative, agile problem-solvers working in intense bursts with down time in between. All of our employers accepted our 'quirks' as part of the package. I never even got a warning about my abysmal timekeeping ... until the late '90s, when both my brother and I found ourselves colliding with rigid systems that had no space for mavericks. (My last boss actually called me a maverick. He meant it as an insult.)

With rigid systems and their rigid rules excluding everyone but the totally predictable, spaces are being provided via reasonable adjustment. I'd need a diagnosis in order to get the flexibility on punctuality and time off to rest. This would then label me 'dysfunctional' and would cause expectations of failure in areas where, perhaps, I may actually excel.

Thinking about our older relatives, we can see some who'd now be labelled autistic with their extreme social quirks, their extensively catalogued collections and their obsessive special interests. One of our uncles was always starting strange new projects, launching himself up & down difficult mountains on a whim, and loved staying up all night for a lively debate. ADHD, probably. None of these people needed diagnoses because they lived in a society that accommodated people's quirks, allowed them to play to their strengths.

Sorry this has turned out so long. I feel quite frustrated by this aspect of the 21st century, and am saddened that the concept of people simply being themselves is getting lost as we progressively comply with the requirement to define and classify ourselves.

PawsAndTails · 28/05/2025 08:49

L00pl00p · 28/05/2025 08:42

Well it does. I’ve found all our NHS diagnosis documents hugely informative.

Neurotribes book is even more informative. The current division into level 1, 2 and 3 is still too broad.

faerietales · 28/05/2025 08:49

Olderbeforemytime · 28/05/2025 08:15

What makes you think now there is an overdiagnosis opposed to being previously underdiagnosed? We know very intellegent women with autism are 13 times more likely to die by suicide. 80% of women with autism will also have a mental health condotion. 1/3 of patients with anxoria have autism and their anxoria is often sensory based rather than wanting to be thin. I have a school friend who was misdiagnosed for decades as bi polar and on meds with dangerous side effects when all along she was austitic/adhd.

For me it’s about people understanding themsleves and been understood by medical professionals.

A lot of autistic women are also misdiagnosed with depression and anxiety. I was in a burnout cycle for years until my own research showed me I was never actually depressed at all, but just massively overwhelmed to the point where I was unable to function.

I now have an autism diagnosis but it took me doing my own research and asking for help to get to that point - until then I was fobbed off with medication or even told that it was just my hormones Hmm

FrodoBiggins · 28/05/2025 08:51

@GarlicPile Don't apologise for the length, I found that so interesting, especially your endorsement of the value of 'fuzzy logic' (which I thought was just Super Furry Animals album and this morning I've learned is an intriguing concept!)

I recognise a lot of what you're saying. I can easily see why reasonable adjustments at work are needed for a lot of people but can't help thinking it would be beneficial if work (and school etc) could be more inherently adjustable/flexible, for the benefit of everyone and our infinite combination of needs and preferences, diagnosis or not.

OP posts:
WitheringHighs · 28/05/2025 08:51

She talks a lot in the book about not understanding how screened cancers behave. We assume they behave the same as symptomatic cancers, but this is not a given. The section on BRCA muttions blew my mind - I had no idea how prevent they were amongst people with no family history of cancers and had made the classic error of assuming that BRCA was the issue not BRCA+family history.

My own opinion on screening (and I am an HCP) is that it is too thoughtlessly pushed and should be much more targeted. I have no family history of BC, am not overweight, have never smoked, never been a heavy drinker, not on HRT, late period and early menopause... ie NO risk factors for BC therefore I am not going to engage with the screening programme. If I develop a lump, I'll get help. But we don't know that any screened abnormality would behave like a cancer, so I'm not risking screening. Other women have different histories and different tolerance to risk, and that's fine. But the discussion should be a great deal more nuanced than 'get screened! You might DIE!!'. Sadly, as we can see from some responses, communicating and understanding nuance is hard.

WitheringHighs · 28/05/2025 08:52

Cynic17 · 28/05/2025 08:36

I haven't read the book, and I have no real knowledge on the ND issues. But I am fascinated to understand what she thinks about cancer screening, because I genuinely don't understand why it's pushed on us so much when there are so many caveats, unnecessary outcomes, overdiagnoses etc. It seems to me to be a massive con, but successive governments have bought in to it.

Sorry, I meant to quote you ^

L00pl00p · 28/05/2025 08:52

BlueTitFly · 28/05/2025 08:43

@L00pl00p

The NHS paediatrician who didn’t diagnose tried to do so without an ADOS screening. Assessments she did in her surgery were very ‘fumble-y’(e.g she did one and said she had the wrong pack), she told me she was new to the job, she didn’t speak to DS in a child-friendly way, and she ended up leaving the job. The second paediatrician has been far longer qualified, and made the diagnosis after I insisted on the ADOS screening.
I felt far more confident to go with the second paediatrician’s diagnosis.
I also feel this has been better for DS because his needs are now specifically targeted (rather than turn taking which it would be more of a waste of resources).
He is making better progress, people understand his needs better - and there is no longer talk of exclusion.
He is making great progress - so to me this is the ultimate goal.

Edited

So not common then- she left the job.

Needs should always be the priority on EHCP regardless of diagnosis and they often need amending hence the opportunities for parental views and them being available for review and discussion before publishing. His needs being met is nothing to do with whether he has an autism diagnosis or not. Many children with an autism diagnosis don’t have an EHCP.

Jujujudo · 28/05/2025 08:52

This reply has been deleted

This message has been withdrawn at the poster's request

Gosh, emotional moment reading this. I’m the same age and I suffer from ADHD and mania, always have from a young age. Of course in the 70’s and 80’s I was called disruptive, fidgety, chatterbox, easily distracted, naughty, silly, etc etc.
I never managed with Maths and really really couldn’t get my body still enough to sit through an exam.
My whole life went a different way as a direct result of not being diagnosed or even aware that what was going on with me was an actual neurological problem rather than just a fidgety, talkative little girl.
I honestly believe that if I’d have been born 20 years later I would have succeeded and been able to achieve my dreams as child. But because I failed everything and everyone (I was an endless disappointment to my parents, they thought I had so much potential but was deliberately destroying my chances eye roll).. I never really did much with my life.
Since being properly diagnosed (in my 40’s) it’s devastating to me how easy it would have been all those years ago to help that irritating little girl to sit still, focus and achieve what she was capable of achieving.

PawsAndTails · 28/05/2025 08:54

BlueTitFly · 28/05/2025 08:43

@L00pl00p

The NHS paediatrician who didn’t diagnose tried to do so without an ADOS screening. Assessments she did in her surgery were very ‘fumble-y’(e.g she did one and said she had the wrong pack), she told me she was new to the job, she didn’t speak to DS in a child-friendly way, and she ended up leaving the job. The second paediatrician has been far longer qualified, and made the diagnosis after I insisted on the ADOS screening.
I felt far more confident to go with the second paediatrician’s diagnosis.
I also feel this has been better for DS because his needs are now specifically targeted (rather than turn taking which it would be more of a waste of resources).
He is making better progress, people understand his needs better - and there is no longer talk of exclusion.
He is making great progress - so to me this is the ultimate goal.

Edited

I wouldn't have wanted ADOS for my daughters. There are reasons for that.

My (teen) daughter went through two full days of multiple tests and screenings in person, and I filled out at least 5 screening documents. It assessed for everything in case of differential diagnosis.

Even the spread over an IQ test can strongly suggest autism.

SomethingInnocuousForNow · 28/05/2025 08:55

Aside from the fact that I'm not convinced there is an 'overdiagnosis problem'... I see it from two sides. As a mother to two children with what would have been termed 'severe' autism (so very high support needs), I do have to admit there is a small (horrible) part of me that gets pissed off when the children of friends get a diagnosis, DLA etc and their children are fully speaking, using toilet, academically able, have some friends etc.

That said, another part of me is grateful that my children's difficulties were immediately 'obvious'. There was very little insinuation that our parenting was to blame like there is with lower support needs children. The reality of scaling back assessment/ diagnosis of the low support needs children however would just make things even more unequal for poorer demographics of neurodivergent people. All middle class people with a spare £1500 will continue to seek private assessment (which isn't going anywhere) and poor neurodivergent children really struggling in mainstream schools will continue to be seen as 'naughty not needy'.

ThatDenimExpert · 28/05/2025 08:56

Life is very stressful, synthetic materials, and unnatural environments. So I can see how someone could be diagnosed with adhd or high functioning autism when their symptoms wouldn’t be there if they hadn’t had such a stressful life.

SENNeeds2 · 28/05/2025 08:57

a neurologist can not diagnose or treat adhd - only a psychiatrist can - and adhd meds don't work if you don't have adhd - so I am wondering why someone who can't legally diagnose or treat adhd patients has weight to her opinion. if nd's showed up on neurolgist scans it would make life easier ... maybe she could stay on her side of the fence and research into that if she has interest in the subject.

L00pl00p · 28/05/2025 08:58

SomethingInnocuousForNow · 28/05/2025 08:55

Aside from the fact that I'm not convinced there is an 'overdiagnosis problem'... I see it from two sides. As a mother to two children with what would have been termed 'severe' autism (so very high support needs), I do have to admit there is a small (horrible) part of me that gets pissed off when the children of friends get a diagnosis, DLA etc and their children are fully speaking, using toilet, academically able, have some friends etc.

That said, another part of me is grateful that my children's difficulties were immediately 'obvious'. There was very little insinuation that our parenting was to blame like there is with lower support needs children. The reality of scaling back assessment/ diagnosis of the low support needs children however would just make things even more unequal for poorer demographics of neurodivergent people. All middle class people with a spare £1500 will continue to seek private assessment (which isn't going anywhere) and poor neurodivergent children really struggling in mainstream schools will continue to be seen as 'naughty not needy'.

It’s more like £3k and I don’t think many middle class parents have that spare either.

YellowOrangePink · 28/05/2025 08:58

SisterMargaretta · 28/05/2025 01:53

Why are people who are unaffected by these conditions concerned about "overdiagnosis" of them?

Unless you are Margaret Thatcher who believes there's no such thing as society, then I imagine people are concerned because it affects everyone

L00pl00p · 28/05/2025 08:59

SENNeeds2 · 28/05/2025 08:57

a neurologist can not diagnose or treat adhd - only a psychiatrist can - and adhd meds don't work if you don't have adhd - so I am wondering why someone who can't legally diagnose or treat adhd patients has weight to her opinion. if nd's showed up on neurolgist scans it would make life easier ... maybe she could stay on her side of the fence and research into that if she has interest in the subject.

This!

GoodGodGaribaldi · 28/05/2025 09:01

Have only skimmed the review as am dashing off to work but what I skimmed was abysmal - ill-informed and lazy old tropes (no ADHD in my day etc).

Also: “O’Sullivan examines the growth in behavioural conditions such as autism and ADHD.” 🙄 Autism and ADHD are NOT behavioural conditions. Christ, do journalists not actually do any research anymore?

WitheringHighs · 28/05/2025 09:01

Jujujudo · 28/05/2025 08:52

Gosh, emotional moment reading this. I’m the same age and I suffer from ADHD and mania, always have from a young age. Of course in the 70’s and 80’s I was called disruptive, fidgety, chatterbox, easily distracted, naughty, silly, etc etc.
I never managed with Maths and really really couldn’t get my body still enough to sit through an exam.
My whole life went a different way as a direct result of not being diagnosed or even aware that what was going on with me was an actual neurological problem rather than just a fidgety, talkative little girl.
I honestly believe that if I’d have been born 20 years later I would have succeeded and been able to achieve my dreams as child. But because I failed everything and everyone (I was an endless disappointment to my parents, they thought I had so much potential but was deliberately destroying my chances eye roll).. I never really did much with my life.
Since being properly diagnosed (in my 40’s) it’s devastating to me how easy it would have been all those years ago to help that irritating little girl to sit still, focus and achieve what she was capable of achieving.

One of her important points is that IF diagnosis and the resultant help was beneficial, then it wouldn't be overdiagnosis. But there isn't evidence that this is the case. There hasn't been a correspondent improvement in outcomes (including adjustments for exams). And yes, there will of course be anecdotes about people who feel individually helped but high level data suggests otherwise.

HerNeighbourTotoro · 28/05/2025 09:02

Totally not interested. The moment I hear about 'overdiagnosing' I know it's ableist bullshit of someone who has not lived with special needs and tries to jusfity not diagnosing (because it's cheaper not to AND you dont need to provide support for people since they dont have a diagnosis). But I bet many people will read it and use arguments to dismiss SEN needs of other people because 'a neurologist' wrote it. It fits within your narrative OP- but that does not make it accurate.
I once med a pediatrician who told me allergies (my DD had a severe dairy allergy) are a made up thing, and I would not exactly quote the man as an authority, and yet he was a doctor.
There are multiple reasons why there are more diagnoses now than in the past and awareness is a big part of it, and the fact many much older people get diagnosed later in life with traits that were present their whole lives.
The end.

L00pl00p · 28/05/2025 09:03

She’s not an expert on cancer either. I know who I’d rather take advice from as regards cancer risk and it’s not a neurologist with a book to sell.

How dare somebody with zero ND experience lecture to those who have and particularly to a group( women and girls) who have been subjected to gendered diagnosis with the result they’ve sat hidden and lost for years. The arrogance of it.

WitheringHighs · 28/05/2025 09:04

GarlicPile · 28/05/2025 08:44

For all those saying it’s society’s “fault” for not being accommodating enough, how would you have it change to accommodate absolutely everyone? I’m genuinely interested

@Sammii82 - Society's getting less flexible, I believe. We increasingly need to classify everything in tightly-defined categories. It's probably not coincidental that this is how computers need data to be organised: 'fuzzy logic' is a popular concept that literally can't be performed by machines; they can only emulate it by processing very many tight definitions and collating the result into something that looks like comprehension.

Fuzzy logic is, however, what human minds do incredibly well: we are flexible, capable of observing patterns and updating our observations on the fly, naturally aware of grey areas and highly adaptive. Creative, adaptive, fuzzy behaviours are anathema to data processing, so they are being defined and filtered. Hence the need for increasingly detailed descriptions and classifications of more and more aspects of human life.

I'm neither a medic nor overly interested in the matter of medicalisation, but can offer concrete examples from my own experience.

I'm 70. I have several diagnosed chronic conditions, one of which is ME-CFS. That's a diagnosis of exclusion and, since it has no known cure (or even cause), is a proper dustbin. In the 1980s I called it 'yuppie flu' and said it was an imaginary illness. Everybody did. All of my symptoms were attributed to depression for about 15 years, which led me to do ever more exercise. I pushed myself until I was developing all sorts of strange symptoms, passing out in the gym - and was given stronger antidepressants, with encouragement to keep up the exercise. Because fitness fights fatigue, right? Half of ME-CFS sufferers are eventually diagnosed by psychiatrists, as I was.

I'm still on the pills (being permanently ill and exhausted is depressing!) but the point of my 'journey' is that the need to apply a diagnosis led directly to behaviour that worsened the condition. In earlier times - up to and including my own childhood - this condition was known by vague names such as nervous exhaustion. Treatment, for those who could afford it, was a long stay at a country retreat, where gentle walks and mineral baths soothed the tired 'nerves' while regular meals and plenty of rest fortified the body. This kind of fuzzy thinking would've benefited me no end, quite possibly preventing the decline that has left me seriously disabled.

My brother and I are certain that we have dyspraxia and ADHD. Neither of us will seek diagnosis because it won't make any difference at our age. We can clearly see how we fit into these 'boxes' - failed schooling when we'd been pegged as shoo-ins for Oxbridge; endless weird travelling experiences because we couldn't figure out what to do with ourselves; the kind of erratic timekeeping that makes Mumsnetters spew hatred; so much more!

One might wonder how either of us managed to have the very successful careers we achieved, given our chaotic natures. Easy: we did jobs that needed creative, agile problem-solvers working in intense bursts with down time in between. All of our employers accepted our 'quirks' as part of the package. I never even got a warning about my abysmal timekeeping ... until the late '90s, when both my brother and I found ourselves colliding with rigid systems that had no space for mavericks. (My last boss actually called me a maverick. He meant it as an insult.)

With rigid systems and their rigid rules excluding everyone but the totally predictable, spaces are being provided via reasonable adjustment. I'd need a diagnosis in order to get the flexibility on punctuality and time off to rest. This would then label me 'dysfunctional' and would cause expectations of failure in areas where, perhaps, I may actually excel.

Thinking about our older relatives, we can see some who'd now be labelled autistic with their extreme social quirks, their extensively catalogued collections and their obsessive special interests. One of our uncles was always starting strange new projects, launching himself up & down difficult mountains on a whim, and loved staying up all night for a lively debate. ADHD, probably. None of these people needed diagnoses because they lived in a society that accommodated people's quirks, allowed them to play to their strengths.

Sorry this has turned out so long. I feel quite frustrated by this aspect of the 21st century, and am saddened that the concept of people simply being themselves is getting lost as we progressively comply with the requirement to define and classify ourselves.

Such a useful viewpoint. I have witnessed a person who was capable of a PhD (started, but didn't finish) regress to inability to leave the house, entirely dependent on a caregiver and almost non-verbal s a result of 'possible autism'. Not even fully diagnosed. True iatrogenic harm.

Jujujudo · 28/05/2025 09:05

HerNeighbourTotoro · 28/05/2025 09:02

Totally not interested. The moment I hear about 'overdiagnosing' I know it's ableist bullshit of someone who has not lived with special needs and tries to jusfity not diagnosing (because it's cheaper not to AND you dont need to provide support for people since they dont have a diagnosis). But I bet many people will read it and use arguments to dismiss SEN needs of other people because 'a neurologist' wrote it. It fits within your narrative OP- but that does not make it accurate.
I once med a pediatrician who told me allergies (my DD had a severe dairy allergy) are a made up thing, and I would not exactly quote the man as an authority, and yet he was a doctor.
There are multiple reasons why there are more diagnoses now than in the past and awareness is a big part of it, and the fact many much older people get diagnosed later in life with traits that were present their whole lives.
The end.

Urgh that old chestnut. Totally with you. My son has Coeliac and everyone has an opinion on that… I even had a family member tell me that nobody had it in their day eye roll til eye drops out

L00pl00p · 28/05/2025 09:06

WitheringHighs · 28/05/2025 09:01

One of her important points is that IF diagnosis and the resultant help was beneficial, then it wouldn't be overdiagnosis. But there isn't evidence that this is the case. There hasn't been a correspondent improvement in outcomes (including adjustments for exams). And yes, there will of course be anecdotes about people who feel individually helped but high level data suggests otherwise.

But there is plenty of evidence which she has chosen to ignore. She clearly has had zero interaction with all the professionals working In the sectors I listed below. Are you seriously saying the only benefits to ND diagnosis is extra time in exams? The ignorance is just laughable.

BlueTitFly · 28/05/2025 09:09

@L00pl00p

Oh I think it could be very common with an under resourced NHS, lack of paediatricians, people being taken into the job with little experience, high turnover (DS has now seen 3 different paediatricians as 2 have left and been replaced), high demand, cost cutting, I’m 100% sure the reason to take DS off the screening list was to save money.