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 don't think you should minimise the less significant level struggles of those who are able to manage society better than others with autism.

Someone I know who may never be independent without significant supports has a much easier time than another I know who is in the workforce with autism. No-one expects them to go to work and they have much less pressure on a daily basis.

@L00pl00p
Definitely not 'pushing my own book', I'm a lawyer not a neurologist and (sadly) have written no books. I sometimes stretch to 30 pages double spaced...

Just found this book really interesting and noone I know had read it, so thought it would be enlightening to hear what others on here thought of it (which it has been/is)

You're so right. For autistic girls, that is often during the pre-teen to early teen years.

I think you’re bang on re. expectations.

People with “high functioning” autism are so often dismissed - “you can’t struggle that much if you’re married” or “you can’t find it that hard if you can work”. Or, “there’s no way you can be autistic if you can do XYZ”.

I’m married and run a business. I’m also autistic and struggle massively on a daily basis. I struggle with pacing, routine changes (I had to cancel a job yesterday due to roadworks and my brain just went into shutdown, for example), sensory overload and often go non-verbal for hours at a time to try and regulate myself.

I can’t work full-time (it just leads to burnout and needing medication to get me out of bed). I struggle with physical intimacy and could never cope with children because of that. I get very overwhelmed at very small changes to the point of melting or shutting down over them.

But people don’t see that. They see a business owner with a husband, a house and animals who drives and is independent. Then the pressure goes on and people don’t believe I can possibly be autistic too.

Define support.

It’s pretty bloody widespread anecdotal evidence then and widely shared with professionals including within the NHS. Maudsley recommends screening for it before ED treatment, CAMHs and CMHT often push for it to inform treatment and the NHS recommend passports to inform treatment. If you are ever needed to give evidence in court and deal with the police there are reasonable adjustments you can have. Within education a diagnosis can be hugely helpful. Then there is access to adhd meds and psycology treatments you can only get with diagnosis….A quick internet search shows plenty of studies highlighting the benefits of diagnosis.

The fact that 70% of people with ND are unemployed or under employed kind of indicates that holding down a great job is rare. And in those rare cases they may be heavily reliant on MH services and medication

@L00pl00p

Yes, DS is very vulnerable. However, I think it’s right I went for the second opinion and that ASD wasn’t diagnosed.
It would be a lifelong diagnosis - and if it was already leading to a potential exclusion at age 4 then - to me - the diagnosis wouldn’t have helped him.

Much of his EHCP was written incorrectly, and based on assumptions that adults tend to make about children diagnosed with ASD. E.g it stated that DS struggles to take turns and x amount of resources are needed for this. The reality is that DS has not issue at all with turn taking, he loves playing games.

The area that needs resourcing is his speech.

It also thinks it’s pretty shocking that I had one NHS paediatrician about to
go ahead with diagnosis and then a second opinion where paediatrician stated insufficient evidence. This means over and misdiagnosis - I think - is potentially quite common.

💯 agree. Everyone thinks their issue is the most important. ND is by its very definition different.

Someone mentioned up thread the believed % of people to be ND. It is the vast minority so no society is ever going to be able to accommodate a minority - all societies and cultures naturally progress to suit the needs of the majority - its basic survival mode.

So yes, some adaptations can be made, but unfortunately those with greater needs who differ markedly from the majority will always be somewhat neglected.

Edited to add - wrt the OP, I believe there is a lot of over diagnosis/medicalisation of natural variation in humans. I don’t have it to hand but I read an article once about hundreds of “new diseases” including cellulite, freckles and even “ugliness”.

And wrt genetic testing - being identified as high risk of developing a condition has massive implications not least the psychological impact as well as practical things like getting insurance. All very well if there’s a treatment but who really wants to live their life thinking they might get condition X but there’s no treatment for it! No thanks.

What makes you think now there is an overdiagnosis opposed to being previously underdiagnosed? We know very intellegent women with autism are 13 times more likely to die by suicide. 80% of women with autism will also have a mental health condotion. 1/3 of patients with anxoria have autism and their anxoria is often sensory based rather than wanting to be thin. I have a school friend who was misdiagnosed for decades as bi polar and on meds with dangerous side effects when all along she was austitic/adhd.

For me it’s about people understanding themsleves and been understood by medical professionals.

It really isn’t common.It’s hard to get a diagnosis. You may well find he reaches the threshold for diagnosis later and the first paed was right. My dc masked their ND at 6 and I really unknowingly accommodated it. They then massively fell to pieces in their early teens when they had to interact more with the outside world and masking became too much.

Re the EHCPs they are notoriously badly written as the authors are often writing huge numbers of them under pressure. They should always be focussed on need. Also not all EPs write good reports. EHCP writers don’t diagnose.

It's an excellent book.

Her exploration of the harms of overdiagnosis in all.manner of different conditions is helpful and considered.

There is a lot of concern from people diagnosed or self-diagnosed as ND that she is undermining their position or wanting to take away any support that may have, but this is absolutely not what she is saying (and comments often clearly demonstrating that the book hasn't been read). Firstly, people aren't ND or not ND. Everyone has struggles in particular areas, and when those struggles reach some threshold, help should he available, whatever the diagnosis or not. Secondly, the act of diagnosis is NOT neutral - it is a form of box that people (not inevitably but very frequently, and unconsciously) put themselves in, and behaviours change as as a result. This is as true of hypertension and heart disease as it is of ND or MH disorders. Doesn't mean diagnoses are sometimes useful, but care is needed.

She talks to many people who have benefited from their diagnoses. I know many who find it a relief understanding themselves using diagnoses. But I think this is because society is unkind to the non-conforming (increasingly so, in the age of globally disemminated SM and identikit beauty or behaviour ideals). I agree with O'Sullivan that pathologising/medicalisjng differences is not the answer to this, and can cause harm.

I think parents seeking such diagnoses for their kids (especially those who have mild symptoms) need to think extremely carefully about the harms of doing do and would do well to read this first.

Nb. The stuff on cancer screening is also brilliant, and underappreciated.

Ugh, can't edit typos. Sorry. *doing so.

@L00pl00p

But I’d rather it was that way round. What if she was actually wrong - is far more impactful. He would have a lifelong incorrect diagnosis.

Looks good.

I certainly think a number of conditions are being misdiagnosed and I have read interviews with senior psychiatrists, including those who were involved in changing diagnostic criteria for ASC.

Many also feel it has resulted in such an unexpected explosion of diagnosis that it's creating a loop effect where the criteria widens and widens to include traits that are seen in more of the population so then more people recognise those traits in themselves and others and seek a diagnosis. So practitioners see more and more people presenting with more 'minor' traits which then alter the conceptualisation of the conditions so more and more people get diagnosed and diagnostic concepts widen further.

The possible eventual outcome being that virtually everyone will meet criteria for ND conditions.

The explosion of social media content around mental health and ND, particularly ADHD contributes to the huge increase in people seeking a diagnosis or even just self-identifying. Plus celebrities with a book or show to promote, or who have just been in trouble for something, coming out with their new ADHD or ASC diagnosis which can often make it seem like every other person seems to be diagnosed with something.

@L00pl00p

Yes, but the EHCP directly impacts the provision that he gets. I realise his caseworker doesn’t diagnose - and has never actually met him! I feel now he has a speech disorder diagnosis, his EHCP is stating provision that targets his needs/better spending of scant resources.

There is also harm in delaying diagnosis sometimes though. It's a mistake I made.

I do sometimes wonder about medical screening. It can be life saving but it can do harm. My mother had surgery for something in her breast she could probably have lived with for the rest of her life not knowing about, and there's a high chance it would have never mattered.

@TheAgileGoldPoet
Yes there's quite a lot of (interesting) discussion in the book about the DSM expansions for certain conditions, including debate about future amendments which would bring many others within the definition, even those with presentations which would have previously been thought to contradict the definition

And what if she was right? Having lived the other way round I’d far rather have had the diagnosis before my dc struggled so massively. There was zero benefit to not having it just added risks we could have avoided, delays in reasonable adjustments and correct treatments which would have been so beneficial, delays in meds, ignorance from professionals, the wrong education, delays in an EHCP, being massively let down throughout education, reasons for difficulties throughout childhood….. the list is endless.

I would like to see autism refined into maybe different and more meaningful 'labels'. It's so broad now it doesn't really tell you anything about how someone is affected.

For me, the term Asperger's had meaning but that's no longer in use. It's what I still identify with most though.

I haven't read the book, and I have no real knowledge on the ND issues. But I am fascinated to understand what she thinks about cancer screening, because I genuinely don't understand why it's pushed on us so much when there are so many caveats, unnecessary outcomes, overdiagnoses etc. It seems to me to be a massive con, but successive governments have bought in to it.

My son had speech therapy at 5/6. He was diagnosed autistic in his early 20s.

In the interests of addressing PPs accusation that this was an ad (fair point I posted in totally the wrong place!)

Ignore the thread police, OP. People can post where they like and posting it in AIBU has triggered an interesting discussion.

Didn't know it was on Sounds - thanks, I'm going to listen.

Care to link?

This really is ridiculous. It is under diagnosed.Minor traits don’t get you a diagnosis. It’s very hard to get a diagnosis. The waiting lists are massive and it’s very expensive. Who would want ND on their medical records by choice?

It was serialised on Radio 4, hopefully this link to the cancer screening section works and you find it interesting: https://www.bbc.co.uk/sounds/play/m0029095?partner=uk.co.bbc&origin=share-mobile

Well it does. I’ve found all our NHS diagnosis documents hugely informative.

@L00pl00p

The NHS paediatrician who didn’t diagnose tried to do so without an ADOS screening. Assessments she did in her surgery were very ‘fumble-y’(e.g she did one and said she had the wrong pack), she told me she was new to the job, she didn’t speak to DS in a child-friendly way, and she ended up leaving the job. The second paediatrician has been far longer qualified, and made the diagnosis after I insisted on the ADOS screening.
I felt far more confident to go with the second paediatrician’s diagnosis.
I also feel this has been better for DS because his needs are now specifically targeted (rather than turn taking which it would be more of a waste of resources).
He is making better progress, people understand his needs better - and there is no longer talk of exclusion.
He is making great progress - so to me this is the ultimate goal.