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 agree in principle and doctors like this make me sick. The entire profession of medical training needs a reevaluation. God complex needs to be removed from the system. It's making sick women's lives harder.

That said, I have struggled all my life with what I think is ADHD (which is essentially meaningless and my opinion) and my life is severely negatively affected. When I went to school it simply didn't exist in girls. That said I have not gone for a formal diagnosis (well I tried, but my borough does not do NHS adult assessments and I didn't push myself to try and obtain a private one) and the reason why is partly because I do think that ADHD in women is possibly not defined tightly enough and so you see so many influencers online doing 'trope' ADHD symptom presentation reels that read as essentially normal everyday things.

Of course women talk about things affecting them more than men do, it's why breast cancer has more public awareness than prostate cancer does, so it's not suprising that women discuss ADHD more as diagnosis in women has become more prevalent

But by the metric displayed (often on SM) it's not surprising that many people dismiss ADHD as being mental health cosplay (not my opinion). I find it frustrating and you do not get this sort of flippant attitude given regarding other neurological diagnosis and perhaps there needs to be a more serious tone about the entire thing.

"the idea that autism is a sickness is offensive"

I'm not sure about the word 'sickness', to me that's being in bed with a flu or something, and eg I wouldn't say my cousin with Down Syndrome has a sickness but for sure he has a disability.

Would you consider it offensive to say that autism is a disability, at least for some? eg those who are non-verbal?

What are you on about? They are actual statistics. So why do you think someone wouldn't meet the criteria 'just for ADHD?'.

The statistics are for people whose MAIN disability is adult ADHD, and they are awarded PIP as ADHD being the main disabling condition. Other conditions can and are mentioned but I don't know why you think someone would put a claim in for PIP with ADHD as their main disability if that wasn't the case?

Of course it also means some people will be receiving it for 'just' ADHD. I personally know people who are.

It’s not an hour diagnosis though. The assessment may last an hour, but there will have been forms filled in beforehand that give the assessor context about the individual’s life and history; there will have been forms filled in by family members/other professionals. There may be medical/educational reports given. These all inform the assessment, it’s never just an isolated hour with no preparatory work

Yes, it's different. It doesn't mean the struggles of the other autistic adults should be negated or aren't difficult.

So considering you know so much and the very lengthy form so well, show me how just an ADHD diagnosis would rack up enough points and where you’d get the evidence from to back your claim?

Not all diagnosis lead to an improvement in quality of life or access to support though.
Because there are illnesses that don’t have treatment. And I’m not talking about ND here. I’m talking about LC, ME, ALS etc etc….

But getting a diagnosis is still essential. Because it names the issue. It’s not just in people’s head. It’s not them being lazy. Or anxious or whatever.

This author is just one of those arrogant doctors who dint listen to patients and think they know best. Not sure why. It’s like they feel they have a god given power to decide how people feel for them.

@L00pl00p

Absolutely! But can they get away with doing what they want - despite what the law states? Yes they can.

Really! How?

I have no idea why you’re telling me any of this.

@MyHouseInThePrairie

Yes I was talking more about ND and excluding children. Relating to my experience : which is 2 exclusions and an attempt to exclude my child before the age of 6.

Also reasonable adjustments are not an absolute requirement. They have to be made if they can be, but can be avoided if the provider can prove it's too onerous/expensive/generally disproportionate.

For all those saying it’s society’s “fault” for not being accommodating enough, how would you have it change to accommodate absolutely everyone? I’m genuinely interested in this because no one ever seems to really have an answer.

I found workplace bar huge open plan office - easier than schools. DD1 been given a whole host of software that she finds helps.

But I've seen it said on here that ND kids are the canary in the coal mine and after DD2 last year think there something to that.

No toilet access she coped with but when it got so new super strict rules made it impossible to eat and drink in school day - her anxiety spike and spill over into everything else. She was noticable less stressed when some more experienced staff allowed eating in classrooms then the new rules were quietly dropped. Seating plans now being a thing post covid in lessons - putting her at back where she struggled to see and hear and next to disruptive indiduals rather than what I had some choice in where to sit.

It was always the ND kids or one suspect and sat on waiting list like DD2 who struggled first - as if the capacity to deal was just lower. Worst classes she struggled to stay in did okay in with alot of home support - but rest of class massively underformed - so looked okay but weren't thriving.

I suspect more kids need diagosises because schools and maybe some workplaces are now harder to manage with milder versions of some ND/SEN conditions when in past they could cope.

Plus people don't always know what the conditions actually are - DD1 was pushed to ASD by teachers - NHS experts no doesn't fit at all - inattentive ADHD another path more deplays to get past. I had same with dsylexia - people assuming it means I can't read or do well educationally - tested well even with reading just can't spell.

Because @Riaanna you posted to me stating this:

“So you don’t think an autistic person should have the diagnosis of autism?”

And my response was this:

When a person receives a diagnosis it should benefit their quality of life and the diagnosis should be an accurate reflection of a person’s needs so they get the right support.
A diagnosis should not result in an individual being excluded from society, an individual being made to feel there is something wrong with them or detrimental assumptions being made about an individual.

No. If it were possible, you'd row back to the times when it was widely accepted that individuals are individual - that everyone has quirks and peculiarities, everyone has strengths and weaknesses, nothing is all good or all bad. The bee in my bonnet is that we, as a society, are losing our capacity to self-adjust; forgetting how to be flexible and adaptable.

I'm not saying there's ever been an utopia. I'm certainly not wishing we had fewer pathways to the identification and treatment of illnesses / syndromes. But, if you'll forgive me, your assumption that it's impossible to have a set of societal expectations which would make everyone comfortable betrays your 21st century preconception that everything must be systematised, classified, defined.

I'm saying that's a misconception, and I'm suggesting it actually comes from an increasing need for computer-processable data (which does require precision). Yet people are not streams of bytes, you're more than a set of inputs. Look at how laws are written. Laws, not SAP modules, are how societies are regulated. Laws are beautifully written to take account of grey areas and context. Most societies, like ours, feature a built-in legal system that further refines the laws as further considerations become apparent.

It's not impossible; it's natural.

I haven’t read the whole thread but I am a GP and myself and other colleagues have had real concerns regarding incorrect and over-diagnosis of Autism and ADHD via the ‘right to choose’ pathway for some time. This has finally been recognised by our local ICB and significant changes are afoot with regards to referral processes and acceptance criteria.

That isn’t due to an autism diagnosis though, it will be due to symptoms and behaviours.

You’ve misunderstood.

Reasonable adjustments must be made. If they can’t be made due to onerous costs they aren’t considered reasonable.

Looks interesting, tjanks op

@L00pl00p

Ok. The lawfully the bar is set high for a school exclusion. I believe the LA makes the ultimate decision.
My DS’s caseworker is completely overloaded. Emails are often not responded to, she is frequently on leave, she has never met DS, she relies on paperwork.

The paperwork I now realise has been woefully inaccurate.

Me - as a parent - if I do not know the law and fight, schools can push an exclusion - ultimately because they don’t want the burden of SEN children and associated cost (although the LA funds this) and impact on school results.

If the caseworker (overloaded) relies on what the school says and makes the decision to exclude - then I need the law. This is not easy at all - delays, DS out of education, fighting differing opinions.

They may push an exclusion due to behaviours and provision but not for a diagnosis. That’s ludicrous.

In my experience GPs don't really have a good understanding of autism and ADHD however, that aside, if the diagnostic process is accurate and robust, does it really matter if everyone gets an assessment?

Nope. Still don’t understand what you’re talking about.

But why don’t you want these diagnoses-is it the cost of the medication?
I would have thought that those undiagnosed on antidepressants are surely better on the correct medication or with counselling and no medication.