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?

No you’re not going to convince me and many more to take advice from somebody with zero expertise in areas she’s pontificating about to sell a book. Glad that’s clear now.

Ime you need to try medications under the supervision of your psychiatrist -and you need to take it over several weeks or even months to get to the best prescription for you. Checking blood pressure, side effects etc

You pay privately for the medication and if you had a private diagnosis pay for each consultation as you try medication and each titration of that medication. It can mount to £Ks.

ime you don’t have a £700 appointment and merrily hop to your GP with a monthly prescription for the rest of your life.

🙄

I think what she says in her book is interesting but humans aren’t good at convincing themselves that that niggling pain, unusual tiredness are nothing, that you might have the Brac2 breast cancer gene , as family members do, but will just put that out of your mind, they want to know!
And as far as I know there isn’t a programme of treatment for illnesses that are thought to be psychosomatic. So I don’t think she takes us much further forward.

Indeed. My ds's adhd specialist explained it to him that all the information is there in his brain, but the neural connections aren't firing correctly which is where the executive skills weakness comes from. If someone's neural connections are already working properly, there would be no perceivable benefit/ change. Taking medication makes those connections 'fire' meaning someone with adhd processes information better. It is very obvious to me as a parent when my ds's medication wears off. Before he was diagnosed, we had absolutely no idea what a difference it makes - for the better.

I don’t mean grow out of autism I meant grow out of the severity of it so it doesn’t impact them as much later in life

Okay, so I wanted to rate this woman.

And am listening to the chapter on Poppy, (Autism) but she talks about how the diagnosis is not dependent upon scans/blood tests but is instead based on assessment according to societal observations of ‘what is normal’ and as these change, so does the diagnostic criteria. She’s a neurologist, so I did in actuality expect better. Yes, diagnostic criteria based on observable social and cognitive functioning is the main criteria within current assessment protocols, and unfortunately (not mentioned) it is largely based on research where 79%+ of those used in the devising of the questionnaires, in the inclusion and exclusion of specific traits, are male. So there is a systemic male bias within the diagnostic protocol.

However, despite this very recent neurological studies that DO use PET and fMRI scans and look at those diagnosed according to that criteria against those assessed as ‘neuroptypical’ show that there is significant differences in the brain function. Ie, there is scope in time to actually run tests using PET scans etc as part of diagnosing individual. And these evidence, therefore, that this is not about societal concepts of ‘normal’ or ‘typical’ but about the functioning of the brain on a neurological level. As a neurologist how can she ignore this?

https://medicine.yale.edu/news-article/a-key-brain-difference-linked-to-autism-is-found-for-the-first-time-in-living-people/

https://www.sciencedirect.com/science/article/pii/S2213158213001411#

I found these on a general google search, yet - not even with her access to specific scientific research and journals via her professional institution - did she look any deeper than her predetermined highly agenda-ed narrative. I will be returning the book to Amazon as I won’t even begin to consider her thoughts on cancer diagnoses if she can’t even get a handle on something that should be within the scope of her specialism.

I think we agree tbh but the point has been lost upthread. NT people worry about these things sometimes to some extent, which is ordinary. Worrying about them constantly and to your detriment (as you described) is not, and people who experience that would often welcome a diagnosis and treatment.

The issue the author raises is with a website which says (I'm paraphrasing) that NT people find social situations easy. I have seen similar on social media with eg posts about ADHD being when you can't look for something without being distracted by cleaning a different room, or when you skip around your to do list and never finish anything (suggesting that NT people are computer efficient and never faff). I think we both agree that such things are common in the general population, and it's doing a disservice to those with ADHD, as well as an often young and ill informed audience of people wondering why "they are the way they are" to suggest that any deviation from absolute social ease and confidence and focused efficiency should be pathologised.

But do people really go for a ND diagnosis if they are not at least concerned in some way?

Who would want a ASD/ADHD diagnosis unless they really needed it?

Who would put drugs in their brains or their children's brains unless they really needed it?

Who would have that on their medical record, it cause a lot of discrimination in the workplace and you can reduce the opportunities to be able to work and emigrate, so who would do this unless it was needed?

If there is overdiagnosis it might be interesting to find out why, what is the drive for people to pursue this?

Of course nobody would go for an ND diagnosis just for the hell of it. I firmly believe that anyone going to these lengths for help and support must be struggling and must need the help and support.

But consider, what if they are incorrectly diagnosed? What if their symptoms are trauma related? Or situational anxiety? But they’ve been told that the ND condition they have will be with them for life. What if it’s a mistake? What if they can get better but nobody ever tells them that?

For me, this kind of attitude is betraying a (probably unconscious) bias against neurodiversity. A neurodiverse affirming approach means that being ND is in no way a fault - it's just a difference. There is still a way to go but this approach has been increasingly taken on by healthcare providers, maybe ever since the book Neurotribes came out. By correctly diagnosing a child as ND you're giving them a valuable framework through which they can truly understand themselves. The last thing it should = is 'finding fault with the child' - in fact the opposite is true. Without the diagnosis, the child has no means of not being found wanting (i.e. at fault) because basically the wrong yard stick is being used for them. I don't understand why some neurotypical people seem so threatened by the fact ND is being increasingly recognised. It's a good thing surely

Which is why you wouldn’t get a diagnosis for either with just those symptoms .

@BlueTitFly your post is interesting. This situation regards schools really interests me.

I went to a relatively strict school. Yet, we did not get detentions like they now do. It is in fact appalling what is happening and I feel making school for most, quite a miserable place.

My son is in the category where his ND status is quite obvious, it's quite a challenge. He sits somewhere between mainstream and a specialist provision but that place doesn't exist. He's in mainstream getting detention after school approximately every other day, every single week. For being late to a class, for not wearing the blazer in one class, for things related to his 3 ND conditions. I wonder how it would have been say 25 years ago for him. It's hard to know. He might have been in one of those specialist behaviour units 🤷.

It's tough for teachers, they're probably trying their best with all this.

It's only when forced to conform to continued societal bullshit that it's a problem or a fault for many.

It's devastating watching the turmoil for many kids caused by one thing; a bloody archaic ridiculous school system designed only to re enforce a conveyor belt of automaton workforce zombies.

The more I learn, the more I see Neurodivergence in the greatest minds ( I'm not undermining how shit and totally disabling it is for many people btw. ). The systems we have just cause so much struggle and difficulty. And as the truth is becoming apparent regarding how common this actually is now, we have a political agenda trying to convince the public it isn't really much of a ' thing ', it's over diagnosed etc etc. It's all nonsense.

In reality, it's frequently

1. Find Fault with the Mother. Generally that it's all in her head.
2. Find Fault with the home environment (see 1.)
3. Find Fault with the child (see 1. and 2.)
4. Find Fault with the school being unable to make the child behave (see 1., 2. and 3.). The School finds fault with the parent and child (see 1., 2. and 3.)
5. Find Fault with the Father (due to the Mother's choice of partner - see 1.)
6. Find Fault with the Mother for not accepting the brush offs, dismissals and blame (see 1.)
7. Eventually, reluctantly refer.
8. Act all surprised when child is diagnosed as ND because the Mother never said anything/they're fine, honest/it'll be a label and we hate labels from A Level Sociology in 1992
9. Deny any Fault in the school environment (see 1 - 7)
10. Decide cannot meet needs/can't afford it and Fault therein lies with the child and parent for being awkward (see 1 through 6)
11. Start all over again in every aspect of life with 1. being the default assumption, supported by 'experts' who spend their careers telling people it's in their head, so is also 3.

@NeverDropYourMooncup yep 👍 👏. In my case we had a few CF behaviours in between and in addition to your spot on list. Forced in my case to go private and refused outright any access to an assessment. Child has THREE ND condition FFS.

School still falling over themselves to blame everything but being ND.

Have we moved on from the ' refrigerator mother
c*fuckery' theory?

I'm sad to say that parental denial on father's side can very often feature in these scenarios and play directly into the hands of the gaslighting systems.

I read Temple Grandins book and she cites these types of studies also. I recall some impressive scan images in her book with demonstrable differences apparent.

Gaslighting is cheaper and easier and the public are easily zombified into compliance and false narratives.

I do wonder why people like this lady go out their way to be somewhat naive and perpetuate something that feel inaccurate on the surface ( I haven't read it to be fair).

I think it's arrogance alot of the time. I've encountered many neurologists and my thoughts were that they were imbeciles, with opportunity and power, in all frankness. Of course that's a huge generalisation and not all will be such.

Do we question every other diagnosis'? After all there’s quite literally hundreds!

Yes, yes we do. Or we should if it is warranted and especially if there is no absolute medical cause that can be proven. She talks about all range of conditions in the book. Not just ND.

True, I had a NT flatmate offer to buy and then eventually help themselves my adhd medication while I was a student. They were prepared to take that risk because the benefit they got from the medication was so great.

I know it is said by many with ADHD that a NT person using stimulants will not feel calm focused and so on but wired and unable to focus that is simply not true.

I don't know if a non adhd person could be diagnosed and then access the medication but I can see the possibility and the temptation because access to this medication offers a huge benefits to people in terms of work, study and even weight loss.

Personally although I had a legitimate diagnosis and reason to use these medications I did stop using them because they were triggering migraines, I felt I was more productive but much less creative on them and I was increasingly concerned about the long term risks to my health.

Excellent questions.

And the only 2 answers you will get to these questions, as witnessed regularly by myself on MN threads is ....

' cos they just want the benefits '

OR

' just want an excuse for bad behaviour

@Pleaseshutthefuckup I have ADHD and Dyspraxia both diagnosed after being referred to test while at university over a decade ago now, previously I was diagnosed with dyslexia in primary school.

I am not sure that its as simple as that. I do think that due to messaging online and via social media many people do start to worry that things that are normal are not and that they are somehow defective and will never ok without help and or medication. This is compounded by certain stressors and behaviours in modern life than can dysregulate anyone.

People feel intense pressure to achieve while life is increasingly precarious for many and distractions abound. Difficulty with mental health issues, the false perception of what others lives and successes via social media means people feel like failures and are looking for answers and adhd or autisim can seem like that answer.

I am not saying anyone isn't what they are or are diagnosed with or that they are lying for preferential treatment and benefits, it isn't that simple but it also isn't far fetched to think that their are private companies profiteering off of peoples anxieties and search for answers.

I mean I can see why some may need reevaluating in the case of varying symptoms but surely we aren’t going to question every diagnosis given by an actual professional?! Who’s to say you should believe one person over another?

I have wondered the same thing and while I'm not saying it's impossible some people who self-diagnose as ND are mistaken (though I'd guess for most it only resonates if you actually are), there's no obvious incentive. It still comes with a lot of stigma and ignorance and misunderstanding.

The day of dd's asd assessment (the face to face bit, which followed a lot of form/questionnaire filling by us and her teacher), I was talking to my sister on the phone. She admitted believing that a lot of the time children diagnosed aren't really autistic (though she didn't give a good reason). I made this exact point @frozendaisy - why on earth would a parent do that to their child, and that's even making the massive assumption that assessing psychologists want to be and somehow can be complicit in such a scenario - and her reply was 'Well, is there money in it?' I was so shocked, I don't even know what I said. It is one of the most hurtful things anyone has ever said to me. I'm so sad about it and yet i can't see our relationship properly recovering from it, it's hard for me to chat normally to her since then. Some people just seem so hostile to it, and I genuinely don't understand why. Like it's a threat to them, but how can it be? It's not like it'll hurt them if another person gets a way of making sense of their experience of being alive that allows them to be kind to themselves and helps them to flourish. I mean, what is the problem?

@limecola yes I'm definitely open to another perspective. And private companies really are profiting because the NHS is withdrawing.