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?

Of course there’s a difference but that doesn’t mean the people who don’t appear to struggle as much are any less autistic 🙄

You were referring to autism. You can’t get an autism diagnosis in an hour with just a tick box form.

@L00pl00p

Ok, just to point out that I am discussing this with you. I’m not stating things to you such as ‘you make zero sense’. A good discussion is about respecting differing points of view.

Never said they don't struggle.

Perhaps different diagnosis is required. Autism with ......

The problem I've encountered when with individuals who have severe and massive life changing symptoms, and I mean severe is that everyone knows someone with less impacting Autism. Try a tablet, try headphones (not tolerated by some individuals due to profound sensory overload) even if on many children, it works for them and they are autistic...that lumping of all people diagnosed into the same incorrect assumption

Unfortunately not surprising and, in my opinion, not unique for her specialty.

many neurologists are expert diagnosticians up to and within the boundaries of their specialist knowledge. Even then, of all the organs, we know the absolute least about the human brain. Amazing as to what is now possible, but still limitations on what can be known and limitations on diagnostic abilities.

It is disturbing when claims and assertions are confidently made about neurological conditions without acknowledging the possibility of error, let alone making commentary on conditions outside medical expertise. Feels like this doctor has made overgeneralisations about ‘psychosomatic’ (or unexplained) illnesses her thing and is running with it in a Julia Hartley Brewer kind of manner.

At best, an inadvertent consequence of her books is encouraging or feeding into a narrative that doctors are never wrong, that there’s no possibility of being un/misinformed, as they are all knowing omniscient beings. At worst, it’s arrogance and contributing to the potential for some medical professionals to further stigmatise patients who are left undiagnosed at the current boundaries of medical knowledge. Medical history ought to be a humbling reminder.

Working with people autism doesn’t mean you’re not ignorant. I’ve met many people working with those who have autism who are extremely ignorant ,hence the rolling out of NHS training.

My dc’s autism has a profound impact on their lives involving multiple services, hospital stays and MDT teams- they don’t present in the way you dictate autism should though. Thankfully the professionals in their MDT teams are far more knowledgeable than you.

@L00pl00p

Yes. Because I have fought to have his speech targeted (rather than turn taking stereotypes associated with ASD) and this is now happening. I realised his EHCP was not stating provision correctly, so I basically rewrote it myself. I insisted on the ADOS screening. I’ve researched DLD.
The result is far better provision for DS and the threat of exclusion is no longer there.

🤣hysterical. Stereotypical ignorance .If only headphones and a magic tablet was the answer for the huge struggles my dc have.

I actually agree that we need something to replace the old diagnosis of Asperger’s.

IMO the main problem with diverse conditions like autism is what you’re highlighting in your answers - that it’s too easy to dismiss those with less obvious outward struggles and so they get ignored or brushed off as rude, ignorant, weird and annoying.

The term over diagnosis is absurd. What are we suggesting people are being diagnosed who don’t have the condition they’re diagnosed with? Or that people should live with it and not be diagnosed? I wish this debate would stop.

I am disappointed that checking for a diagnosis of adhd or autism with prisoners doesn’t seem to get mentioned.

If you fail at school I’m not sure how people are supposed to make a living these days.

If you have a low dopamine level due to ADHD you are more likely to drink, smoke, take risks, gamble, take drugs -to think that medication for a few hundred £ a year could fix some of the problems which have prisoners in jail and costing £40,000 a year. But no one seems to be following this up.

If you are adult being diagnosed surely you will have decades of problems which you can recount to the psychiatrist.

ADHD is actually underdiagnosed. See here: https://www.facebook.com/story.php?storyfbid=pfbid02zcdhEHgmLaykk4HjYpz5WGHXozPnv5YshncD1UZZnSF8QYrummwH2Hn9duj9psKBl&id=100068086362854

The waiting lists are huge and in west Yorkshire alone, the service has been stopped due to 10 years waiting list. People are fighting to be assessed so not really a sign of over diagnosing when you can't even get an assessment!

I'm so tired of this goady crap. I'm a late 30s woman, diagnosed late in life. Due to gender bias, women are massively under diagnosed as we present differently. The biggest diagnosis age group is my age group. Do you think women my age follow a trend? I wish this was a trend. I'm sick of myself, my life because of this shit. People who think it's over diagnosed politely don't know what they are talking about. If someone wants my life they can have it. I'm not medicated either.

@Riaanna

But this nearly happened to my son.

With a SEN system in crisis, exclusions at an all time high, a school trying to exclude my child before they had even met him because they thought he had ASD, and two further exclusions in DS’s class already before the age of 6 - very, very open discussions need to be had around this and discussions shouldn’t be shut down.

We should NOT be excluding children. I also don’t think we should be labelling children. We should be meeting their individual needs and NOT giving them the impression that there is something ‘wrong’ with a child by our adult-defined labels and standards of ‘normality’.

Not in terms of their autism though - they are either autistic or not, same as anyone who you might decide is ‘not as bad’. As a PP suggested, much of that may well be comorbid learning difficulties anyway.

I did - however they also interviewed my dad and wanted a lot of information from him as well.

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

Exactly.

They say the Panorama expose was poor journalism when the programme was made because so many people working in the field, were saying it is a problem. And the programme proved that it is.

As do all of these companies doing these poor assessments, prove there is a problem and that misdiagnosis is happening which of course leads to over-diagnosis.

Yet all these myths still persist: "it's hard to get a diagnosis, it's expensive, nobody would want one, ADHD meds don't work if you don't have ADHD, you can't get disability benefits for ADHD, there are no financial or employment advantages to the diagnosis"

All false.

When I worked in the sector and was part of diagnosing someone with adult ADHD, the person would sometimes say 'so can I claim PIP?' and i'd say, you can try but PIP is based on really specific functional disability so it would be rare for someone with adult ADHD to get it unless there were other conditions.

I believed that to be true at the time but have since discovered that out of 500 plus conditions that can form a PIP claim, ADHD is the 14th most awarded as the main condition, with 41% of ADHD claimants getting the enhanced rate of both daily living and mobility awards.

As you can only claim PIP over 16 years old, we're essentially dealing with adults with ADHD and as adult ADHD has only been formally recognised as a condition in the UK since 2000 and by NICE since 2008, it's astonishing that it's risen to such a position in PIP benefit claims in such a short space of time.

Wouldn’t meat the PIP criteria for just ADhD. Hell I have both and don’t meat the criteria. Doesn’t mean they haven’t significantly impacted my life though.

And again you can’t get an autism diagnosis in an hour with a tick box form.

This! It’s ridiculous .

I don't know why you'd be disappointed with people not mentioning it on a chat forum about a book.

But to reassure you, when I worked in the Adult ADHD field I was part of leading trying to make that happen in the areas covered by my NHS trust and I made business plans to seek funding from NHS England for a specific service.

That didn't happen so I was using my own time quite often going into prisons to perform assessments and train staff to look for signs/symptoms.

That was a few years ago and I have since left that service as I got a more senior role and since I then, there are now specific specific neurodevelopmental teams covering the prisons in the areas covered by my NHS trust.

I believe it's happening in other areas too and if successful, i'd imagine they'll be rolled out nationwide.

https://www.gov.uk/government/news/greater-support-for-neurodivergent-offenders-in-bid-to-cut-crime is a good start and I believe more dedicated health teams are in the pipeline.

Exactly. I've also worked in this area for many years. People won't believe what you or I say though, despite working in the area, just their own beliefs and despite evidence to the contrary.

@Riaanna

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.

I’m all for diagnosing if it helps the individual child cope better… and more importantly isn’t to the detriment of NT kids.
Surely we cannot change the entire education system to accommodate the few and exclude the many.
It’s the same argument someone made upthread about how you cannot accommodate ALL types of ND as they’re different and present differently.

I have seen threads on here when someone was told to remove her NT child from school after she was being touched inappropriately by an ND child. That blows my mind.
If the majority of children are able to thrive with the education system as it is, why would we want to change that? There needs to be far more support for ND kids I agree, but we cannot make the world fit around the few to the detriment of the many

It is illegal to deny a child a school place solely because they have autism. The Equality Act 2010 prohibits discrimination against disabled pupils, and autism is considered a disability under this act. Schools must make reasonable adjustments to ensure all pupils, including those with autism, can access education.