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?

I remember listening to this woman be interviewed on R4 for her book "It’s All In Your Head" and recounting patient stories. Her faux ‘compassion’ was risible and, to me, her smug arrogance came through loud and clear.

On an individual level, I felt sorry for those who had her as their neurologist. More widely, it was depressing at the thought of the damage this book would do as other doctors read it and began to discount their patient’s symptoms as psychosomatic even more.

If only someone would write a book on the number of people harmed by having their unexplainable symptoms dismissed or minimised by patronising doctors.

And now she’s at it again with this new book. Yes, there are dangers from pathologising and over prescription but in my opinion this book, like the others, grotesquely overstates medical knowledge in understanding human illness and the human body.

And I've seen someone go from dropping out of university three times, to being diagnosed with ADHD, which enabled them to not only graduate but get to a PhD.

You need a lot of evidence to get an autism diagnosis and the wait lists are insane. One crappy paed who has since left doesn’t infer there is mass over diagnosis when the data doesn’t match that either.

Our overdiagnosis epidemic - New Statesman

https://nypost.com/2023/04/24/doctor-who-broadened-autism-spectrum-sorry-for-over-diagnosis/

In answer to your question, A LOT of people want a diagnosis of ND. I used to diagnose adult ADHD as part of an NHS clinic which did great, multi-disciplinary assessments and because of the information required and the screening process before assessment, we diagnosed over the overwhelming majority of the people we saw.

And although with all psychiatric and ND assessments, there are personal biases and blind-spots in we may have got some wrong, I think we mostly got it right but the people who didn't receive a diagnosis were often very invested in the diagnosis and very upset to not be given one. I can think of only one person I saw who seemed relieved. Many people were upset, some were angry and some were threatening.

And quite often, the people who hadn't been diagnosed went to a private Psychiatrist to get a diagnosis thinking that would get them back into the NHS system. And quite often, someone had already got a private diagnosis to 'jump the NHS queue' into treatment by the NHS and were pissed off when the diagnosis was not upheld. Many were upheld though.

After the Panorama programme a few years ago expressing concern about private ADHD diagnosis, a world-expert in adult ADHD who championed the diagnosis and the provision of adult ADHD services in the UK, Professor Marios Adamou OBE said that in his NHS clinic, 50% of the private diagnosis assessments reviewed by the clinic, would not have recieved a diagnosis in his NHS adult ADHD clinic.

I’m staggered somebody could be so arrogant as to lecture to cancer, ND, Lyme, Covid…consultants and specialists.

She apparently thinks she has equivalent knowledge in all. 🤣

I've not read the book, but I am skeptical. Claims of over-diagnosis of ND conditions smacks of the far right (eg Farage's claims). The increases in diagnosis, IMO, is the growing acceptability of being neurodivergent and the comfort people can get from a diagnosis so that they are no longer worrying about what's wrong with them and having to mask all day long, which is exhausting.

Since learning to recognise traits in undiagnosed children, I have become a much better teacher because I know which behaviours to ignore and how to steer children back on to the right path when they are exhibiting ND behaviours not conducive to the learning in the classroom. When you hear older people (Gen X or Boomer) say I hated school, I didn't get on at school etc, a lot of this is because their ND was not recognised and instead they were punished for behaviours they either could not help, or didn't not understand why they were not acceptable. I've heard that 1 in 100 children are ND, but I would say there are at least one in every classroom so these conditions are still being uderdiagnosed.

I think there is definitely an over diagnosis of ADHD and Autism going on. I work in a primary school, and in the class of 30 I work in, the teacher and other staff are claiming that at least 10 of the children have some form of neurodiversity. There are 3 who definitely are ND in my view, however, the rest are questionable in my opinion- children are all different, having a little personality quirk, struggling to not shout out, liking learning facts, being a bit of a fidget, having a strong interest in something etc. do not automatically make you ND. Not being a perfect model pupil at age 7 does not equal ADHD.

The book sounds interesting. I'm a teacher and every training session I've had on SEND in the last few years has pointed out that many the strategies for making lessons more accessible for ND pupils almost always actually benefit all pupils, which is a good point. The same could be said about changing fundamental aspects of our school system.

I agree in principle with a lot of what has been said about our school system being unfit for purpose and over-focussed on exams. In many countries they don't have high-stakes exams until the age we do A Levels. However, I think people over-estimate how flexible it is possible for individual schools to be in terms of offering different pathways and options, due to staffing and timetable issues.

The thing I've noticed being pathologised is anxiety (and I say that as someone who has suffered it). Kids are learning that being anxious about something means that they 'have anxiety'.

That documentary has since been scrutinised and criticised for poor journalism.

It is hard and very expensive ( if private)to get an autism diagnosis. ADHD diagnosis is expensive as is subsequent titration and funding of meds

You would only want either on your medical records for very good reasons.

I am biased but I am SO sick of people trotting out 'over-diagnosis' of ADHD and autism.

There was no diagnosis of either condition, except at the absolute extreme end of the autistic specturm, for decades. So of course there will be a surge these days as a) children and teens get correctly diagnosed and b) adults who spent their lives struggling and wondering what was wrong with them finally discover why. That is three generations at least, catching up.

I was diagnosed with ADHD at 59. That was six decades of being screamed at for being forgetful by teachers and parents. Missing an A level because I forgot what day the exam was on, so getting a D when I was predicted an A. Losing friends, boyfriends and offending family because I forgot meet ups and birthdays, of being incapable of holding down a steady job. Getting into trouble on the underground because I forgot to renew my weekly pass. of Locking myself out of the house about three times a week. Spending at least an hour every day frantically looking for keys/phone/handbag/travel pass. Not understanding when people said in exasperation: just find a place to keep them and always put them there, because if I could remember to do that when I walked through the door, then there wouldn't be an issue in the first place. Having a chaotic, confused approach to cleaning and tidying, unable to keep on top of the laundry, missing dental and doctors' appointments. Double and sometimes triple booking clients when I first became self employed, and having to cancel at last minute. Getting truly depressed that I knew I was clever and talented in my field but simply couldn't manage the ordinary day to day stuff that went alongside it. Doing jobs sometimes for very long hours, worth a lot of money and not being paid for them because I forgot the final stage of submitting an invoice.

I could go on and on and on. I have had friends smirk and roll their eyes when i say I have been diagnosed. But since taking ADHD medication, I don't forget things. The constant noise in my head (a combination of very aggressive, negative self-talk combined with a weird noise which is like listening to people talking loudly while a television blares, through the walls of a cheap hotel) is gone. The food noise is gone.

DS was diagnosed with autism aged 12. It transformed his life. His brilliant school offered oustanding support, helping him socialise, so for the first time he started to make lasting friendships. All teachers were informed, so they knew to use very direct language (e.g. he used to get in trouble for not doing homework because teachers would say 'Finish that off in your own time or before next class.' He needed to hear: 'Your homework is to finish...' otherwise he had no idea it was homework. We helped him get super-organised. He is now thriving. he went from bottom sets to top sets, from profoundly lonely and low to surrounded by friends, from zero interest in hobbies to getting really good at something he loves, from zero confidence to a real knack of acing job interviews.

DH has not been diagnosed, but after sitting in on DS's lengthy assessment, he realised his answers, which he thought were normal, tallied with DS's. It has saved our marriage. I now understand him far better.

I see my niece suffer so badly, underachieving, deeply distressed and chaotic. It is like watching my own life all over again. But my sister doesn't believe in ADHD. I know Ritalin would transform her life.

It is so easy for people who don't suffer one of these below the radar illnesses like ME, CFS, mild autism, ADHD to sweepingly criticise over-diagnosis. Yes, the world is full of very different types of people. But we are not allowed to be different. There is an expected norm. That people don't forget appointments, do have the energy to keep on top of housework, or to do a 9-5 job every day.

It can't work both ways. It's not okay to say: stop seeking diagnosis. You are within the realms of normal but simply failing at being normal, which is what so many of us spent our lives battling with.

“Not being a perfect model pupil at age 7 does not equal ADHD” and wouldn’t get you a diagnosis.

We’re talking about actual diagnosis .

This implies that autism goes away when your environment changes - but it’s more the case that certain environments mean you don’t have to mask, and therefore you’re less likely to shut down or go into burnout.

Sensory overload is a huge thing for me so I’ve set up a business that minimises my triggers. I couldn’t do that in school or if I was forced to work in an office or a shop.

Thank you. I saw that documentary and thought it was appallingly misleading. It had a mission before it began. Nothing exploratory or investigative. It sought proof of its pre-planned outcome. Total confirmation bias.

I think it's completely normal in pop science literature for a scientist to write a thematic book without being an expert in each disciple. If that didn't happen only highly specialised books would exist which are largely unreadable to non-scientists. The book's not about ND anyway, it's only a chapter on autism, it's about diagnosis as a concept, and many neurologists are expert diagnosticians.

However there's interesting stuff discussed on the thread from a pure ND viewpoint, someone mentioned Professor Marios Adamou (who pioneered much adult ADHD testing) and his view that ADHD is frequently misdiagnosed privately, and another poster linked to a new book on ND by Dr Sami Tamimi who is a v experienced child psychiatrist.

Private assessment is ubiquitous where I live amongst my friendship groups. I'm in a low middle income family and many of our friends (most with higher incomes, some with lower) have purchased private assessments.

I've seen cost ranges from £800 (but dubious looking places tbh) to £5000 for multiple assessment bundles.

If she's talking about breast cancer and over diagnosis then fine. I think it's quite well known that a lot of women are treated for breast cancer than would never have actually developed due to screening.

But the idea that autism is a sickness is offensive and the idea that it is over medicalised is ridiculous. I don't believe it's over diagnosed or diagnosed too early, I think it's under diagnosed and many people with high functioning ASD fall through the net and spend their whole lives struggling and not knowing why.

Neurologists are not autism or adhd diagnosticians. She has zero ND expertise.

She has zero cancer expertise too.

As I said I know who I would take advice from if potential cancer was flagged up and it wouldn’t be a neurologist with zero expertise and a book to sell.

Not true that only a Psychiatrist can diagnose adult ADHD, that's how so many people are now being diagnosed by private clinics who bang out assessments in an hour online.

The NICE guidelines for diagnosing ADHD in children or adults says psychiatrist, paediatrician or another healthcare professional with expertise in ADHD diagnosis. So nurses, psychologists and other healthcare professionals can and do diagnose in NHS and private clinics.

You don't even need a psychiatrist to prescribe medication, there are thousands of nurse prescribers in the UK , many of whom are prescribing medication for ADHD. They're overseen by psychiatrists but there are far too many prescriptions needed for it to be solely the role of psychiatrists.

And the nurses are much cheaper.

This is one of the most ignorant posts I have ever read on MN. The trouble with books like this one, even if well-intentioned, is that they can legitimise ignorance and prejudice imo.

@RedBeech
Your experience of receiving diagnosis and how treatment helped you (and your family) was really interesting, thanks for sharing. As I think I said in a much earlier comment on here, I think that the book does suffer from the author recognising that a number (if not all) of people she discussed in the ND chapters feel the diagnosis benefited them but then sort of suggesting that there was no real benefit. It would have been better imo to detail how both medication and other treatments/adjustments are provided post-diagnosis and what benefits they have - although she does touch on population-level data on eg exam results. I would have been interested to hear more about adult dx and px, although perhaps that is a whole book in itself!

I listened to her on the Dr Chattergee podcast recently and honestly felt a bit sick the way she described knowing (as a medical professional) that someone had a medical condition but thinking she should not impart that knowledge to the patient themselves. It was like a God complex and if a patient had come to her feeling something was wrong, would be medical gaslighting.

@GarlicPile Really enjoyed your post. I've had similar reflections from the other side of this (diagnosed at a young age, many years ago).

That’s a really interesting thought.

I have actually experienced an adult rock up to a group with 'I'm autistic' a recent diagnosis, aged mid 50s, then assuming to speak for 'autistic people ' . It happens. The poor individuals that struggle with every aspect of their life dumped in the same box as this self serving adult male know it all who now wants to speak for them since he's 'autistic'.