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 think people are missing my point, maybe that’s my fault for not being clear enough. I believe many of the PRIVATE providers contracted by the NHS are not being thorough enough in their assessments and are overdiagnosing/misdiagnosing neuro developmental disorders. They are often done online or sometimes over the telephone in short 60 minute sessions. The assessments performed by the NHS neurodevelopmental team are a lot more thorough, are done face to face and sometimes over more than one session. You don’t have to be a neurodevelopmental specialist to be concerned by the difference in assessment methods.

I understand why people go via right to choose, the waiting lists for the NHS teams are years long and right to choose is promoted and paid for by the NHS so people trust it. Unfortunately I would not trust a right to choose diagnosis as far as I could throw it.

This does not mean that GP’s don’t want people to diagnosed or be on medication. We want them to have the a correct, reliable diagnosis. These diagnoses change lives, often for the better but sometimes not. I know of a young person who was diagnosed privately with ND as a child. As a young adult they have been rejected from a career they desperately want based on this (probably) incorrect diagnosis. Getting the diagnosis retracted will be near-on impossible now. It’s sad and incredibly concerning.

@NKU2029

Which was exactly the experience I was going through with my 4 year old DS. Except it WAS an NHS paediatrician. If an NHS paediatrician can potentially get it wrong, then I have absolutely no doubt that a private assessment could be wrong too.

So what is your point? Children with SEN should continue to suffer because you were able to cope with the school environment? Or that they should continue to suffer because it might affect the already-advantaged NT children?

If private providers are unreliable, why is the NHS using them for Right to Choose, though? Most of the private providers are NHS registered and adhere to NICE guidelines in their assessments. We resorted to a private assessment for our 14yo ds, because we weren't making any progress with the NHS and we needed help before he moves into his GCSE years. Assessment, diagnosis and medication has been a game changer for him.

@L00pl00p has you child (particularly under 18) ever had a mental health hospital inpatient admission? In our area they should definitely be automatically be screened for autism (and probably ADHD) and their hospital MDT can diagnose if necessary.

I would recommend emailing your ICB's Dynamic Support Register team and requesting they are put on the DSR, which doesn't require a formal diagnosis. P.M. if you would like some advice about this.

And what is the ICB doing to hold these providers to account? Legal contracts for provision of services by third parties are accompanied by SLAs, robust commercial processes to ensure the provider is fulfilling their contractual obligations etc. What procurement route, and required processes and regulations does the NHS follow when awarding a contract, and monitoring its efficacy? And how many NHS route patients do not receive a diagnosis, for comparison?

They interpret the guidelines as just that, guidelines.

I.E a guide and not best practice.

That was the argument we had continually with commissioners when I worked in an adult ADHD NHS clinic, the commissioners acknowledged that the service we were providing was best practice as advised by all adult ADHD experts and by NICE.

But it was time and labour extensive and as we had an extensive waiting list, the commissioners said we were providing a 'gold-standard' service which they didn't want as if we were taking 3 hours to perform an assessment, with additional work outside of that, and there were private providers offering an assessment and diagnosis in 1 hour, which was cheaper and reduced waiting lists as 3 X the number of people could be assessed and likely diagnosed..

They went for the cheaper, inferior version and the contract for that NHS clinic went to a private provider.

They are NHS approved but inferior and resulting in more misdiagnosis.

@Sammii82i totally identify with what you are saying.

My point was to the posters (inc a GP) saying people are seeing videos on. TikTok and getting online diagnoses which are wrong - so if this is the case I am asking why lots of adults are rushing to get diagnosed when they prob don’t have it. What’s in it for them?

The reality is though that different NHS trusts will also 'interpret' NICE guidance. Because they're guidelines. Our private provider insisted on obtaining evidence from ds's school as well as from home, for example, because she said it was in the company's, and our/ his interest, that the diagnosis was deemed robust enough not to be questioned at a later date (for example when entering into a shared care agreement). I have no doubt though that some private providers are better than others, in much the same way that some NHS trusts are better than others.

But I didn’t cope in school all the time. I was off for a couple of months in secondary as I just refused to go in because I absolutely wasn’t coping. And that was likely due to undiagnosed autism but no one knew that at the time. Maybe I wouldn’t have needed time off if I had had reasonable adjustments made. But. My point is. What if my adjustments were at odds with someone else’s? This is my point. Someone else’s adjustment might negatively affect me. At the time when I was young I was thought to be NT. Turns out I wasn’t. There may well be more children now that people think are NT are it turns out they aren’t. What if those children are negatively affected by an adjustment and it turns out only an opposite adjustment would help them?

So the SEN child that needs a constant clicking toy is suffering without having one right? But by giving them one they are now affecting the SEN child who needs quiet in order to be able to cope in school. Who wins? The quiet child should just suffer? Or should they leave school?

No one can ever answer this. I just keep getting told I’m being discriminatory against autistic/ADHD/SEN children who need the noisy adjustments. So yes it seems the children (and adults) who are quiet and cannot cope with noise should apparently just suck it up or leave the school/work etc.

We resorted to a private assessment for our 14yo ds, because we weren't making any progress with the NHS and we needed help before he moves into his GCSE years. Assessment, diagnosis and medication has been a game changer for him.

DD1 and DD2 friends who got diagnosed privately have all been in same boat.

We coudn't afford it so they waited till timed out/got to old on NHS lists - or till DD1 started all over again at Uni and new GP and took any last minute appointments and filled in endless forms to speed it up.

The concerns have always been there - often raised by schools as well till it came time to put in resources or pay for testing - then it's all back tracking.

Absolutely this!!!
And if I had a child with, or I had a genuine case of ADHD I would be livid at this trend! The pressures it puts on an already overstretched healthcare system, not to mention the people with genuine cases having to join increasingly long waiting lists and to add to it, the stigma is probably worse now than it was before

Bit like this book then.

For starters, NT kids aren’t a universally advantaged group of people.

Secondly, what level of inconvenience do you think is reasonable to make adjustments for ND kids?
Moving an entire 30-strong group of kids out of a classroom and disrupting their education several times a week because one ND child is throwing things around a classroom?
Or how about the thread on here a few months ago where a woman was told she should disrupt HER NT child’s life by removing her from the school where she was being molested by an ND child?
Do we stop sports day because some kids are in a wheelchair?

We are asking and expecting very, very young children (including those with conditions that the poster you quoted mentioned) both ND AND NT to understand and empathise with something that is adults can’t even agree with. They’re being expected to mould their whole school experience around a small percentage of kids. That makes no sense to me. I don’t know what the answer is, but surely it’s not to make everyone have a miserable time of it

‘ inconvenienced’ is an interesting word, though, isn’t it? It implies something like having a choice of peas or French beans, which would not ‘inconvenience’ anyone, everyone just chooses the one they prefer.

My neighbour’s DGC was ‘inconvenienced’ by the ND boy who was sat next to her, who fidgeted, jumped up and down in his seat ( jolting her every time) ran out of the building and climbed the fence, thus triggering an evacuation, hummed and chattered so she couldn’t hear the teacher….but he has a right to an education. And it seems DGD doesn’t, or not as much right.

NDN is now paying for DGD to go to a private school where her ‘needs ‘ for a peaceful what would have been considered ‘ normal’ classroom experience are not set aside for a one way interpretation of equality. nDN doesn’t go on holiday. To pay for it, so DGD is ‘lucky’.

Now- shout at me 🪖

My thoughts are, everyone has known my child is probably autistic since he was 3 years old and referred for speech therapy. At 8 years old and in year 3 we are still on a waiting list for an NHS diagnosis, he was referred through school in year 1.

So it's laughable to me for someone to suggest autism gets diagnosed too early!

So in a class of 30 kids.
3 suffer because they cannot cope with the school environment
They change the environment so they can cope. But now the other 27 kids can’t.
Is that fair?

Exactly this!
So let’s say a reasonable adjustment would be more frequent toilet breaks. Fine, that inconveniences nobody as long as it is well managed and not too disruptive.

But to move an entire group of kids out of the class because they cannot send out the one kid that is disrupting everyone else? That’s not reasonable.

What kind of changes to the school environment enable nd kids to cope, whilst being detrimental to the nt kids? Do you have some examples? Because the kind of reasonable adjustments I'm aware of tend to improve outcomes for all. Similarly, strategies and methods used to assist nd children can also benefit others.

The answer to this is for schools to get more funding and for teachers to have more support staff in the classroom if needed. I've been told that my child would have had more help years ago but the money isn't there any more.
It's not about pitting children against each other.

I’ve listed them several times in previous posts.
If reasonable adjustments improve outcomes for all, then I am all for them.
Another poster has detailed her experience of this also.

I've literally never seen or heard of this happening. Yes, some children disrupt and they're usually removed from the situation. Keeping them in the classroom and removing the rest of the class benefits nobody. Is this an actual example of something that is commonplace?

I agree, you cannot put NT up against ND and have a debate over which group is more ‘advantaged’ or more deserving of education than the other.

For starters, there is a wide range of different needs all under the ND banner that often contradict one another
And there will be NT kids struggling too but for different reasons - unhappy home life or bullying, for example.

Surely the answer is to make school as accessible as possible for the many, not the few. To allow as many students to thrive as possible - whether NT or ND.

Yes, it has happened at my DS’ school and on a regular basis.