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’m all for diagnosing if it helps the individual child cope better… and more importantly isn’t to the detriment of NT kids.

Well done, I guess, for admitting an opinion that I’m sure many on the thread share but few would dare to express. That ND kids may have their diagnoses and support as long as NT kids are not inconvenienced. Because ensuring no detriment to NT kids is more important than helping ND kids to cope.

I haven't read the book, but I'm mildly irritated that it's been serialised on the radio rather than any of the several more interesting-looking books about disability by disabled authors that have been released recently have received no such attention. e.g. Frances Ryan Who Wants Normal? is an anthology with chapters from all sorts of disabled women. It's on the same display in my local waterstones, so clearly considered in the same kind of category. Or Rachel Chorlton Ramping Up Rights is coming out soon, about the history of disability civil rights in the UK - I bet that's not being converted into radio. I'd much rather curious non-disabled folks read something with disabled voices than something from some arrogant neuro who isn't even qualified to diagnose half the conditions she's on about.

This!!!!!

And yes in my experience GPs( along with a lot of NHS staff) are hugely ignorant re ND.

Wouldn't you rather patients have less time under CMHT, less hospital stays, less over medication, less suicide attempts, an easier access to work, less depression, more ability to focus with less dangerous impulsivity, the right treatments which lessens length of treatment…..

I’m am not diagnosing ADHD or Autism, simply referring those who request an assessment. But my concern is exactly as you mention, that the process is nowhere near robust enough. To put it simply, I refer between 4 and 7 adults a month via right to choose (i.e. a private provider contracted via the NHS) for autism and/or ADHD assessments. How many of those referrals are either rejected or assessed and advised they do not have a diagnosis? NONE. That is really very concerning. It has now also been flagged as a major concern by the integrated care board, so this isn’t just based on anecdotal evidence.

Yes that's a very fair point. I should have said the duty to make adjustments isn't absolute. That duty is qualified as expressed in the caveat 'reasonable'. That leads to many occasions in which, unfortunately, a need for an adjustment can be unmet without unlawfulness.

I would agree with this - here you need a GP referral even for a private ADHD assessment. DD’s GP told her there was no point in a referral because she couldn’t have ADHD, her GCSE grades were too good. Then he said that she might have it but shouldn’t worry and should just think of it as a superpower. She was in tears trying to explain what her life was like. In the end he agreed the referral (probably to shut me up) and she was diagnosed.

And re GPS you say you didn’t have the expertise to even process ADHd meds and engage in shared care so how so much knowledge re the diagnostic process?

So so short sighted. Less right to choose means more pressure on the NHS and even longer wait times. Less shared care means even more pressure on ND consultants…..

Yes, every single referral getting a diagnosis probably does make me raise my eyebrows. I would think that as there will be a reason someone is requesting a referral, there is some issue that maybe makes it more likely that a higher number of people in the referral group would get a diagnosis, when compared to a similar sample size from the general population. But you'd expect for at least a few there would be some other sort of underlying issue identified.

Again misleading. The duty to make reasonable adjustments is absolute.

Case law has well established what can he considered reasonable.

ADHD in particular has suffered with the rise of misleading and inaccurate posts on SM, with hashtagADHD being viewed billions of times on Tiktok.

With studies showing that more than 50% of the most popular videos being misleading or inaccurate

.https://chadd.org/attention-article/adhd-on-tiktok/

And experts in ADHD saying so, it's astonishing to me that some people want to claim it isn't a trend.

Reducing a complex neurodevelopmental condition to '10 signs you have ADHD' on social media, most of those 10 things being experiences that the majority of the population experience, IS a trend and IS a problem when those people seek a diagnosis and get one from a shitty private clinic. Or are just self-identifying and going through life claiming a condition they don't have.

In 2024, the most searched conditions in the UK on the NHS websites were COVID with 3.7 million searches and second, ADHD with 3.6 million.

'Increased awareness' doesn't mean anything other than that people are bombarded with information telling them they might have a condition, and I include MN in that, where posts with extremely scant information are met with a reply of 'sounds like ASC/ADHD'.

'Increased awareness' doesn't mean increased understanding or literacy in the MH or ND conditions being mentioned.

And it is, and will continue to be damaging.

It bemuses me that many, many MN posters were understandably concerned about the rapid rise in children and adults identifying as trans/non-binary, often supported by diagnosis and treatment by medical practitioners and saw that as a damaging sociological trend influenced by social media but deny it happening when it comes to ADHD for instance.

So if all these kids are watching inaccurate videos it’s not really going to impact the diagnosis process is it.

4-7 adults a month is hardly a lot. The NHS picks providers and most adults will have had many years to mull it over with often dc diagnosed previously. I was fast tracked by the NHS however I will be doing right to choose with one of my adult dc who absolutely is autistic and has adhd. He has long not wanted either on his records but can no longer cope. All his siblings and half his cousins have it, he has the same family history and horrendous traits. He would get a diagnosis anywhere as I’m sure most of your 4-7 patients a month would.

But what are the negatives of an ADHD diagnosis - I have one, I don’t tell anyone except a few close friends, but I’m not working so not needing special allowances (but even if I did would it bankrupt the business?)
Is everyone trying to get a prescription for stimulants for fun? I don’t need medication.
And the Gp above said 4-7 patients a month -what is that out of his total patients -6% of the population are deemed to be ND.
Also there are Thousands undiagnosed but the rising graph will fall off a cliff in a year or so once all the adults are diagnosed.

I know Psychiatry UK who were previously performing a lot of those 'right to choose' private assessments funded by the NHS were so overwhelmed they've closed that service for adult ADHD and have waitlists of over 3 months for ASC.

Not misleading, you must have misread my correction which says "the duty to make adjustments isn't absolute".

Anyway I'm not arguing about the law in my free time and for free 😂

If you’re a lawyer god help us all.

Do you think it didn't lead to thousands of children identifying as trans? And then being referred to services and diagnosed as such?

You don't think it pathologised normal adolescent experiences and discomfort with body changes and adolescent development? to the point we had such a sudden rise in apparent trans-identifying children that resulted in a leap from one in 60,000 in 2011 to one in 1,200 in 2021?

You think that can be explained by increased awareness of gender dysphoria?

And you don't think the information influenced parents into thinking they had a trans-child?

And you don't think parents are influenced by SM including MN into thinking their child has a ND condition? or a mental health one? There are hundreds of threads on here where that happens.

But I think the ADHD videos are most effecting the adult population who are influenced into thinking their personality, characteristics or just going though a shit time is indicative of them having a mental illness or ND condition.

Because there are generations of undiagnosed people who have struggled through life. And now they are identifying that they aren't chronically anxious, friendless, shit at life... they have a neurological condition that needs diagnosis so they can better understand and manage it.

Incorrect videos aren’t going to help you get a diagnosis. And do jog on with dragging trans into this. This isn’t your trans debate. ND is massively under diagnosed and had years of genderised diagnosis. We have a lot of catching up to do.

I don't understand your point?

No adult who thinks it would result in negatives to their life is going to seek a diagnosis.

It's by definition a self-selecting group, only the people who think it applies to them and want a diagnosis for whatever reason are going to bother seeking one.

You make a valid point.

This is why it would be much better if assessments were given purely within the NHS (I realise it might be impossible) or the person pays private themselves. I wouldn't like to be told I have something I don't actually have. I would want full confidence in my diagnosis.

I also am all for reasonable adjustments where possible. But. I do think before some adjustments are made it should be looked at whether it affects ANYONE adversely. Whether ND or NT.

I wonder how you would solve the issue I mentioned previously in the thread.

I am autistic but was only diagnosed as an adult. But when I was at school I hated noise or chaos. I loved following the “rules”. I hated playtime. I couldn’t cope when other children were whispering or messing about. I wanted to sit in silence (ideally on my own) and just do my work. As an adult I wear headphones a lot of the time to deal with the noise in the world but I still just need to remove myself from situations at times.

If I was at school now and the child next to me (or anywhere in the room I could hear and see them) was given a clicker toy and was allowed to keep standing up and down whenever they wanted I honestly wouldn’t have coped. That is their adjustment. But what is mine? Should I be removed from the class in order to accommodate the child that needs to keep moving?
Say you move all the children like me to another class. The school would then get accused of “othering” the more noisy children. What if one child LOVED quiet all around them. They thrived in a silent environment BUT only if THEY could click a pen constantly. Do you put them in with the quiet children? Now the silent class isn’t silent. The only one thriving is the clicking child. Back to square one.

Not all ND are the same. They all have different needs. How can reasonable adjustments accommodate everyone?

I think the problem these days is that when people mention reasonable adjustments it’s on the assumption that everyone else around them is NT and can cope with anything and that there will always be someone to cover. I have a diagnosis so I guess if I was asked to cover someone doing something I couldn’t manage I could use my diagnosis as a reason why I couldn’t. But imagine I never got my diagnosis? I still couldn’t cope with what was being asked. But I’d have no argument. So a lot of the time people asking for reasonable adjustments that rely on others covering might need to be aware that those saying no aren’t just being difficult. Maybe they have undiagnosed issues themselves. Especially if it’s true what people on this thread are saying that ND is UNDER diagnosed.

It’s just generally a very difficult situation. There’s rarely any winners in most of these situations. And as someone else said earlier everyone thinks THEIR issues are the most important. Those whose children need to move a lot say it should be compulsory to have lots of movement breaks. You saw it after Covid as well on here. Whatever year someone’s child was in was THE MOST affected year out of all the school years. It’s just human nature and survival to think about your own needs most. But sadly these days it seems hardly anyone ever wants to consider others at all.

So only the rich get a diagnosis, in some places the wait is 9 years!!! My son needs his diagnosis now.

Sigh.

You clearly haven't read my numerous posts on this thread.

Inaccurate videos won't get you a diagnosis but if you see 10 signs of having ADHD on Tiktok which says things like "being easily bored by subjects you aren't interested in, scrolling on your 'phone, procrastination, finding it hard to get to sleep, friends saying you take over conversations" which can apply to the majority of the population if not all, at various points in life.

That can lead to people looking at more videos and seeing more traits in themselves so that when they get to a virtual assessment which is only the DIVA adult ADHD diagnostic tool and it isn't being used correctly so they just get asked a bunch of tick-box questions without any context or rigorous assessment of that persons actual life, history or experiences and can vary from day to day when asked.

I really don't give a shit in this context with the trans debate but it is relevant because of all of the people who yell 'people aren't influenced by social media, the only reason for a massive increase in diagnosis of ADHD/ASC is because of more awareness...and it's really hard to get a diagnosis"

And that's why the trans debate if very relevant.

But aside from that, It's so tiring when people like you don't read all the comments and assume the person is some kind of 'denier' when they're not.

Something being potentially under-diagnosed in a population doesn't mean that there are not numerous shitty misdiagnoses taking place and that people with experience in that field who are telling you that should be dismissed like they're some X poster saying ADHD is just naughty kids and shit parents.

At least read comments on a thread, it's not hard.

Edit - i just realised it's you, the poster who just keeps denying and deflecting despite all the evidence and well-thought out posts.

Sorry you and your family have lots of ND issues. No-one here is attacking you but you clearly are very closed-minded and taking it all personally. Maybe step away if you can't engage in an actual discussion.

I also am all for reasonable adjustments where possible. But. I do think before some adjustments are made it should be looked at whether it affects ANYONE adversely. Whether ND or NT.

This is great but not what the PP whose comments I was addressing said. Their view is that the needs of an already advantaged group are more important than the needs of the less advantaged group. The DC with disabilities can have some help only if the DC without disabilities are not affected. Heaven forbid anyone who is not disabled is inconvenienced by an adjustment for those who are, or is asked to put a disabled person’s needs ahead of their own. It’s similar to other views seen on here quite a lot - cf also “I am all for helping poor kids and they should be allowed to go to university of course, but can’t believe that my brilliant privately educated child has had their Oxbridge place taken from them by someone from a state school”.