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?

Just listened to the R4 reading from her book Episode 2: Long Covid and I’m absolutely spitting. She says that Long Covid is psychosomatic because there are no tests showing abnormalities and the symptoms are so wide ranging. That’s just completely untrue. I have ME (not Long Covid) and the overlaps between the two illnesses are huge. There is mounting evidence of physical abnormalities showing that ME/LC is a multi-system disease, hence the huge range of symptoms. It’s time doctors actually updated themselves instead of peddling myths from the last century.

Well, you clearly have a viewpoint you don't want to move from.

I can link you to numerous statements like Dr Adamous and other testimony from people who worked within the system who tell you there IS a problem but you want to disregard it. What possible reason do you think people who worked in the sector, championed the entire concept of adult ADHD which wasn't even recognised as a condition till this century -BECAUSE of these practitioners work in getting it recognised, accepted and treated - would want to say there's a misdiagnosis problem?

And I left the sector a few years ago but at that time, private assessments were around £700 which isn't that expensive. Private prescriptions are costly, which is why many people got a private diagnosis then tried to get into the NHS service for treatment and were pissed off when their diagnosis was not upheld.

There are many. many reasons someone would want a diagnosis whether they have the condition or not. I'd say everyone really, really thinks they do so that's a big motivator. They want explanations for how they feel, how their lives have panned out, struggles they have. They are also employment, financial and housing motivators.

And the clinic I worked at, we spent years arguing with the commissioners who said our assessments were too long and in-depth and therefore, too expensive and causing waiting lists. Because we did assessments over several hours, with a multidisciplinary team and with a lot of information required. The commissioners didn't want that, took up too much time and therefore too much money so a while back, the NHS lost that contract and it has gone to a private provider providing a poorer service where it will be easier to get a diagnosis.

These are real things that are really happening.

It's very difficult to have a decent debate about this on MN as posters seem to think it's a personal attack on them, their children or whoever else they know that has ADHD or ASC or that we, with concerns and experience and expertise are somehow 'deniers' of the conditions or their prevalence. And we're not.

Absolutely agree with this. If societal expectations weren't so rigid we could absolutely make space for the normality of people being different from each other. I believe I am one of those women who were neve diagnosed because I learnt how to behave for society while feeling like a terrible misfit most of the time, desperate to please people to my own detriment and with terrible anxiety that hid behind a front of confidence. It makes me very sad to think about what life could have been like for me with a more understanding society.

Yep, the adult diagnosis is banged out by private clinics in an.hour after completing tick.box forms. There's a large number of adult diagnosis now. I prefer a spectrum, at least the people that struggle day to day and cannot look after themselves don't get lumped in with the look at me I'm autistic adult private clinic diagnosis. Having worked with adults with PROFOUND and LIFE CHANGING challenges, that cannot look after themselves, even do self care, cannot live alone, never have relationships or work it's completely different.

“Expertise in adhd diagnosis “ being the key words. She doesn’t have that

And re autism-“A formal diagnosis of autism spectrum disorder (ASD) requires an assessment by a specialist team, often including doctors, psychologists, and speech-language therapists. For children, the team should ideally include a pediatrician or a child and adolescent psychiatrist. A diagnosis cannot be made without a comprehensive assessment. “

She doesn’t get to over ride said assessments, MDT teams and professionals with expertise who very much feel diagnosis was warranted and needed in regards to my children.

Screening (not for ND, but for illnesses), investgat8ve scans, etc are so effective now that we can have anomalies spotted v early. Sometimes spotted incidentally - so they investigate xyz but also happen across unrelated anomaly abc at the same time. Would you want to know?
Treatment for conditions that are asymptomatic and you are very likely to outlive... probably not worth the side effects, but I'm fairly sure I'd want to be treated anyway, just in case. Irrational of course.

I also see normal things being spoken about as if they are medical issues- being worried about your unwell baby isn't health anxiety; mourning the death of a loved one isn't depression, being unfit because you don't exercise isn't a heart condition, though I guess all those things CAN ultimately cause a medical issue.

But the “self serving adult male” you describe is someone showing incredibly clear signs of autism - poor social skills, info dumping and an inability to see things from another point of view are all classic signs of the condition.

Yet because he presents in a way that pisses you off or annoys you, he’s criticised. It’s a tale as old as time when it comes to neurodiversity.

Absolutely agree with this. If societal expectations weren't so rigid we could absolutely make space for the normality of people being different from each other.

I hear this a lot and I sympathise, but I often wonder what these specific expectations are, and how you could make individual people change their expectations. You're obviously right that people are different from each other, but that means that people's own societal expectations are also always going to be different too. That makes it impossible to create a society where societal expectations are universally non-rigid. I'm assuming that even if the world were populated entirely by ND people, it would still be impossible to have a set of societal expectations which would make everyone comfortable.

There isn’t. You have just spouted complete rubbish. Clinics can not spout out an autism diagnosis in an hour with just a tick box form. There’s not a large number of adult diagnosis. Previously autism diagnoses (like adhd)was heavily genderised which left women and girls undiagnosed. Now we have better knowledge and diagnostics those lost women and girls want their diagnoses. Don’t really get what you prefer,your ignorance is palpable.

He's claiming he's the same as the person who needs 24/7 care and lacking any independence skills.

Perhaps high functioning and low functioning or Asperghers should be used?

Not being able to manage basic self care is not one of the diagnostic criteria for autism though. That’s not what autism is. The criteria allow for people with what you describe as profound difficulties and those without. One is not more autistic than another, and it’s not their fault if they don’t seem severely enough affected by your standards. They are autistic whether you like it or not.

Let's also include narcissistic people then. Where does it end. I don't care if everyone says they are autistic just don't pretend they speak for individuals that are massively impacted by their severe symptoms.

Your preferences don’t thankfully over ride the highly qualified professionals within my dc’s MDT teams either. They have profound and life changing challenges even though they have been able to live alone and hold down jobs at times. Looking after themselves is subjective. Thank goodness there are better informed professionals.

You are though🤣You seem to think your picture of autism trumps the autism experienced by my massively impacted children.

@L00pl00p

I truly don’t think mine was an anomaly or isolated incident.

NHS waiting lists are extremely stretched and I had to wait nearly two years for the ADOS screening.
I firmly believe that - in order to reduce demand - there had been a decision (and I believe this decision was made as a group practice for the area) to remove children from the list who they felt they could diagnose without the need for an ADOS screening.
And this would have happened has I not insisted on the screening.
If you look at DLD v ASD - there is much discussion that the ‘fashion’ for ASD has led to DLD being overlooked : whereas DLD is actually more commonplace than ASD. Yet you rarely hear of DLD.

I think part of the issue is that the ASD spectrum is so broad, and - I think - subjective - that a teacher or teaching assistant can make assumptions about a child.

An unqualified TA does the majority of DS’s interventions. If she is specifically targeting DS’s speech, this will have better outcomes than anything more generalised and associated with a ‘stereotype’ of ASD.

Yes - and another trait of autism is black and white thinking, so he sees an autism diagnosis as being an autism diagnosis no matter the impact.

Many people with autism who require constant care also have other conditions as well.

Wipe their own bottoms, dress themselves, massive life changing ocd behaviour meaning they cannot hold down any job, aggressive, non verbal, needing 3 to 1 support, very complex and life changing is different from many late diagnosed adults!

All you’re doing is proving that you have absolutely no idea about autism or how the autistic brain works.

This!

I think they were talking about adult ADHD, which is 100% being diagnosed in an hour by numerous private clinics.

Here's just one from a quick Google search, there are many others.

https://www.berkeleypsychiatrists.co.uk/lp/adhd-assessment#book

Adult ADHD assessment - 60-90 minutes.
Virtual - £745, in-person £1,045.

"The assessment typically takes 60 minutes"

So, really not hard and really not that expensive despite what other posters may claim.

Nope. Worked with many individuals with autism which ranged from smaller impact on their day to day life to profound impact on their day to day life. A massive difference.

Indeed.

Just because people here say it doesn't happen doesn't make that statement true!

You’re conveniently ignoring the fact that autism often goes hand in hand with severe learning disabilities - many of the people you describe who need constant care and who can’t function without medication and support have other conditions as well as their autism.

It’s interesting that you display quite a few autistic traits yourself in your responses.

A TA would only be targeting his speech. IEP targets are specific and if a speech therapist is involved they’d be following their advice. How would you change speech difficulties to a stereotype of autism? That makes zero sense.

When people deny what is provable.

Just because they didn't get an hour diagnosis doesn't mean it's made up.