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

[FrodoBiggins]

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?

Is this an aibu or an advert?

I’ve read her other 2 books, and although she tries to expand into other area, she does retreat to her comfort zone of functional neurological disorders. Some chapters very familiar, others more interesting to me eg the Huntingdon’s one.

My main take home was her description of the difference between misdiagnosis and overdiagnosis. Diagnosis should give meaning and benefit. Overdiagnosis suggests that technically it may not be misdiagnosis, but it is not beneficial and dilutes the meaning. I found this a very helpful concept.

Argh yes sorry I should have posted it in the books section! I think the post which led me to make it was in AIBU so I was in the wrong bit. Will try to move it 🙈

I haven't read it but will look for a copy, thanks OP. It's a topic that interests me, especially the overdiagnosis of autism and ADHD.

I also found the Huntingdons chapter particularly interesting (although very sad). Agree that the question of what benefit diagnosis brings is a huge one. I think I had always assumed I would get genetic testing if I thought something ran in family (and was confused by my step siblings not wanting the same when they appear to have an inherited condition in the family) but it really opened my eyes to how that would actually feel and the benefit/detriment weighting exercise.

I found it interesting that most of the people in the ND chapters she did case studies on did report that they benefited from their diagnosis. She seemed somewhat dismissive of it but I don't think that can be dismissed.

In the interests of addressing PPs accusation that this was an ad (fair point I posted in totally the wrong place!) I think lots of it is serialised on BBC Radio 4 so you might be able to listen to much of it for free. I got it for a credit on audible. Or the library! 😂

In Search of Normal by Sami Timini also came out this year and covers some of the same issues in more depth. He is a child psychologist and very interesting on autism and adhd. I’d recommend any parent thinking of seeking a diagnosis for their child to read this book first.

@steamlover ah thanks for recommendation, have just downloaded it.

Yes, I've read it, and I would once have agreed things like ADHD.autism are overdiagnosed, until I got involved with the realities of that community. I now think they are actually under-diagnosed, especially among women.

My own view is that it's the nature of society, rather than the traits themselves, that cause difficulties for ND people. In another society, they may blend in perfectly as it would accommodate differences better and everyone would find their niche. However, this is the society we are forced to be in so, from that POV, recognising the difference may be helpful and necessary. But society is the problem, not the person or traits.

Some things may be over treated perhaps, when different management would do?

I don't think I want to read this if she's an advocate for this nonsensical FND stuff.

it might seem wrong to have all these ND conditions diagnosed; because it's a huge proportion of people who are ND, therefore not so ' abnormal '.if we accept the true prevalence and increase. With the true population significant in numbers, medicalisation by way of diagnosis may feel wrong and instead it might be best asking ' wtf is normal '.

But, we have very rigid systems such as school and work in this culture which truly makes life a nightmare for our huge, genuine, ND population. This is where the need for a diagnosis proliferates for me.

I have a number of horrible autoimmune conditions, including one neuro disease. Every dealing with a neurologist has resulted in me educating them. There's something about that profession wherein I have little faith in intellect, capacity for critical thinking and much more.

In the bin with this one for me.

Yes, agree entirely. 👏

I've not read it but as a mum of 4 dc with autism and one with another ND condition I find the subject interesting.

I have noticed on social media an increase in people with more significant needs having children, which just wouldn't have happened 20 or 30 years ago. I'm sure that is part of the reason there are more people being diagnosed with ND conditions. Also there is considerably less shame in being disabled or having a disabled child. Dh was diagnosed as an adult because PIL thought that if he wasn't diagnosed then his disability would go away .

@pleaseshutthefuckup ah I probably have my own bias re FND as I suffered from one myself (thankfully short lived). Before that I believed it in theory but a part of me probably doubted it!

Are you looking to confirm your bias?

Are you looking to defend yours?

I think it's the use of ' over diagnosis ' in your post.

Out there, in the shadows, it's apparent that it's much more likely we have a problem of under diagnosis and mis diagnosis, such as borderline personality disorder, especially in women ( no shocker).

Publicly, we have a rhetoric perpetuated by numbskull politicians that this whole thing is just over diagnosis. That's part of a political agenda to pull resources away from those who need it, as usual in our current system. The public will perpetuate it further with little knowledge, understanding of what's really going on behind the scenes here. It's another thing to jump on in order to blame something for the problems in society.

There's nothing concrete at all to suggest anyone is over diagnosed. I've sat in on an Autism assessment following the NICE guidance. There's no way this is easily mistaken. No way at all. It's a myth and a bias based on the personal life experience of us living it.

I don't know what the evidence says about overdiagnosis, hence my interest in the subject. I understand people feeling defensive but Ponoka7's pithy reply was uncalled for.

I have not read this book, but can offer a personal perspective in 2 ways. One, I am waiting for a referral for dyspraxia and all my life I have struggled with things that fit this. People may think ND conditions are being overdiagnosed, but there are some of us who have struggled in life, all through school, and never had a suggestion of any testing. Then again it was the 90s/early 2000s and school age people weren't assessed like today. It has been a struggle feeling different, bad co-ordination, struggles with maths, memory, sports etc. People do need to know what they have, why it is happening, how it affects you etc rather than being left to muddle along and have no answer when trying to explain to people. Secondly, my family has Huntington's disease. It is ton not don at the end. The condition hit my family 30 plus years ago out of the blue with a sibling to one of my parents developing it. They were misdiagnosed for a few years. It obviously was hidden in previous generations from my grandparent too and my grandfather showed a few signs we passed off as old age. People don't think of it being hidden and then a relative develops it and it affects so many. My parent also sadly developed it and passed away after 14 years. I almost got tested, but felt it was not the right time as I was a carer to my parent. If you want children it is only fair to know first. I am going to first deal with my dyspraxia assessment and then look at testing gor Huntington's. I do not have children but my sibling does but had them before the proper diagnosis of our relative happened. I do not agree with overdiagnosis or what is the point of knowing if you have a currently incurable illness. There is a decision you can make on that, but I won't go into it on here. People need to know especially with alzheimers when you plan for care.

@oneblossombee is so interesting hearing your experiences with it, thank you for that. I can well understand why Huntington's (apologies for typo) gives rise to on average many multiple sessions of genetic counselling before a decision to test (or not to).

I think my dilemma with Alzheimers is that it's a bit of a different 'diagnosis', you can be tested and told you have a higher likelihood of it but it's still certainly not inevitable. I don't know if I would rather know that or not, although I can see your point about practical arrangements like preparing for care needs.

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

Maybe because they take an interest in contemporary medicine and society? Surely you don't have to be directly affected by a phenomenon to be interested in it?

Within my family at least 3 generations all have ND minds but none of us were diagnosed until it got to mine and my sisters children. it explains a lot I struggled my whole life to “fit in”,

However now the current school system can not cope at all with bright intelligent children who don’t fit the box. Both mine and my siblings children have an autism diagnosis 1 boy 1girl and yes the boy got his diagnosis aged 4 and the girl aged 11. The boy managed to stay in mainstream schooling with a lot of support achieving grade 8-9 on all GCSEs. The girl was forced to leave mainstream schooling into HomeEd and has mental health issues. If she had been better supported earlier could she have stayed in education longer? This pattern is being repeated weekly I see mum’s mostly asking on HomeEd groups about autistic academically able young women completely unable to cope with life & school. It’s not easy to get a diagnosis but even with it our society isn’t accommodating for those who aren’t “NT” when actually I think it’s 50:50 just not recognised.

My theory is that it is a backlash, that society could feel comfortable about itself when the number of ND people was thought to be 0.1% or less. But as that number has risen, and those previously “quirky” people you have known throughout life are now included…
And it is now seem to affect women in far larger numbers, and maybe explains a lot of women who were shut up in previous generations or received various treatments for mental health (I know 2 women who received ECT, who both received late life diagnosis, and another diagnosed with BPD who I suspected was ND).
I’m not sure how society reacted when it was realised that far more people were left handed, when it ceased to be oppressed. But Society is resistant to change and doesn’t like to feel guilty for past/present mistreatment.

I'm looking forward to reading it and agree entirely wuth the rigidity of social structures like school and the demands made on individuals which wouldn't have been there in the past.

I also think that neurologists as a group are very interesting and unusual people - especiallyin the UK where there is a relatively tiny number managing vast caseloads. I find what makes people head for a particular speciality in medicine intriguing.