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 France and U.K. are easily comparable, they are not like for like populations IMO.

Agree mental health is poor in the UK but it’s not caused by misdiagnosis.

In your later posts you speak about ‘fault’, I don’t see it as being a fault of the DC that their brain works differently.

Regarding a teacher mentioning ADHD, it’s valid as a consideration among others, but was only a suggestion and they are not qualified to diagnose.

A doctor would have to assess and agree to make the referral. Even then DS (2+ years later) would not have been diagnosed at the point of the specialist assessment if he didn’t meet the diagnostic criteria.

I really can’t see how an ADHD diagnosis would logically cause a parent step back rather than forwards with more awareness and therefore confidence in parenting. I’m not sure why you think that would or should have been your response if your DS was ND.

I also can’t see a downside for the child to gain awareness and learn strategies to support them.

Those functional MRI findings are interesting but the authors acknowledge overlapping results between NT and ASD groups - and it's a study with 2 groups each of 13 people which is tiny (as are many imaging studies). Seeing possible differences on research MRIs between groups does not mean that a scan can be used to diagnose an individual. For a test to be diagnostic it had to robustly identify the condition of interest with high sensitivity and specificity - this research does not do this. We are a very long way from having any objective test for ASD.

True, but it is promising and there have been additional studies - I am just frustrated that as a neurologist the author didn’t consider broader research (to which she would have considerable access through her institutions and colleagues/network) but chose to go down the route that [paraphrasing] autism is merely a deviation from standard accepted societal norms in behavioural terms and do we need to need to pathologise it? TBH I think there is a middle ground, I think understanding that there is growing evidence that it is a neurological disorder that may be discernible on scans but that society would benefit by being more adaptive/compassionate/supportive/inclusive of all types of individual difference is where we need to be aiming.

‘Diagnosis’ should therefore be more about ‘identification’ of cognitive/ neurological styles, in the way we don’t ‘diagnose’ shortsightedness but actually define vision parameters in order to equip an individual with the right prescription glasses for their daily needs.

Not sure if that makes sense, but the point is that I don’t think ‘over diagnosis’ is the issue, its the expectations surrounding them, the expectations and emotional impact that flow from it that we need to fix?

Have you read the book? Cos that is really not an accurate summary of her conclusions, at all

Did anyone read any of the other chapters? 😂

Every word of this.

@NeverDropYourMooncup

Why is inadequate parenting considered ‘taboo’ or ‘outlawed’ in preference to seeking diagnosis for a child?

A scenario. A child who misbehaves and and swears is told at a young age that if he swears again ‘I will wash your mouth out with soap and water’. Parent is a lawyer. Has had an extremely privileged upbringing where considering the needs of others above their own has never been a factor. Parent struggles immensely with the empathy required to put their child first. Parent seeks diagnosis. Child is diagnosed with ADHD, PDA and ASD. Parent now sees this as the reason for the poor behaviour in the child rather than addressing their parenting skills. Child’s behaviour is not improving and they no longer attend secondary school.

Why is it never a possibility that parental input is at fault? Is it always the child’s diagnosis that is the reason for the difficulties faced? What impact does that have on the child?

@Bowies

No - I don’t see it as a ‘fault’ either. I see it as addressing individual needs.

The difficulty I have faced is that the school has seen DS’s needs as a ‘fault’ and attempted to exclude him.
This has made me question whether there is a ‘fashion’ for convenient labels to define children’s needs. Whether these are potentially detrimental - rather than putting the onus on the adult to address the support they are putting in place to meet a child’s needs.

Is this a true story? It's awful. I had soap rammed in my mouth for repeating a swear word heard directly from the mouth of my parents. I don't call that bad behaviour. I call the parents imbeciles and in need of education and better tools.

Swearing really is a big ' thing' with every ND kid I know. I have no idea what it's about. It's difficult but hilarious at the same time.

My son is PDA. It takes another level of parenting really. You really can't attribute behaviour that's common in PDA to poor parenting.

It's a really tough balance though because there's a place here for letting go of some really ridiculous rigid rules and a need for control that we do impose as adults, but there's a need to ensure accountability and helping develop someone who can get along and get by in society. So both things are true so to speak.

I’m not referring to her book there, am I - I’ve moved on and was referencing the research I linked earlier (after reading the chapter in her book on autism/Poppy’s story) and stating how I personally feel diagnosis should work… I don’t reference the author at all in that post.

That’s not how diagnosis is going to work any time soon, if ever. Even neurodegenerative disorders (various dementias) are primarily diagnosed on clinical presention and rating scales. It’s nice if a brain scan supports the diagnosis, but very often it doesn’t. No one is going to implement expensive PET scans routinely for autism diagnosis.

ASD, ADHD etc are neurodevelopmental conditions and so it’s expected that there will be structural or functional differences even if these are so complicated or heterogeneous there is no one pattern. The author doesn’t discount any neurological basis, just correctly states how these conditions are currently diagnosed and will continue to be for the foreseeable future.

Yes let’s talk about something less controversial, like long covid.

You'd firstly need to precisely define what is meant by 'neurological and cognitive style'. We can measure a wide range of cognitive abilities which vary significantly according to age, education and general ability. Picking out patterns even in well defined disorders (Parkinson's, Alzheimer's) is tricky, requires detailed neuropsychological assessment and on it's own is unlikely to be diagnostic - it's part of the picture and needs to be viewed in the context of the individual and change (or lack of it) over time. You could have 2 people with similar cognitive profiles where 1 person has been like that lifelong and the other has dementia

Personally I find the terms 'neurodiverse' and 'neurotypical' to be incredibly vague and ill defined. I doubt if the brain activity of an adult with profound learning disability and severe autism is particularly similar to someone living and working independently with a diagnosis of ADHD or developmental coordination disorder.
Functional imaging is great but it's vulnerable to small group sizes in studies and lack of replication studies (as it's expensive and time consuming, hence not really an NHS tool). I'm not very surprised that this wasn't included in a single chapter on autism (haven't read the book myself, been meaning to listen to it on BBC Sounds)

@Pleaseshutthefuckup

Unfortunately - yes it is.

The child was aged 3 - and had clearly learnt the swear word from the parent.
The parent’s response was soap/water (and I can only think that was a strategy learnt from their parent).
The child was active and demanding, but the parent had poor parenting skills. They now have an ASD/PDA and ADHD diagnosis and the child does not attend school.

Another scenario. Child has ASD diagnosis at age 4. Child is completely in control and will refuse to eat all except 3 or 4 different food types. Parent is totally led by the child, and continues to only give these food types by age 6 and continues to give formula milk from a baby bottle. If the child shows any sign of being upset, the parent will back down and tries to appease the child. E.g the child loses a toy and claims it’s the parent’s fault - the parent agrees to this to avoid upsetting the child. Parent uses as screen as soon as the child shows any sign of being upset, believing the screen is for decompressing. Child is on a screen for a large part of the day rather than engaging in play activities. Parent refuses to do any reading book/tasks set by school if child isn’t interested or chooses not to do it.

And this is something that also needs to be discussed.

There are misdiagnosis in all medicine fields, not because the medical practitioners do it deliberately, but sometimes mistakes are made.

Why is there suddenly a boom in social media and advertising for ADHD tests, take this test to see if you have ADHD, but you don't get an answer you have to hand over personal details, companies only do this if there is cash to be made somewhere along the line.

People calmly brushing off their own behaviour, as they did with, I have OCD I have to have all my cups colour coded, when you are thinking, that's not OCD is it really, that's just an excuse to be a dick if someone puts a cup in the cupboard where you don't think it should go. So the explosion of, if you can't handle life admin/chores you are likely ADHD, is swirling the waters for people who do have ADHD.

It's not just a misdiagnosis, there is the social watering down of truly debilitating conditions.

Having a whole bunch of private assessors willing to give you private prescriptions, ticking people off a list and sending them on their way with a bottle of pills and an ADHD diagnosis when there isn't the time or trained staff to consider other options.

The health service will do its best to treat any health condition it can, physical and some mental/psychological presentations, they can treat, especially if you can take blood tests, have scans, see something physical.

But the watering down via social media for some of some of these conditions should be a huge concern for everyone. We don't want a society where a young adult can hit a bump in the road and search online and be convinced it's because they have been misunderstood their whole lives.

There are increasing numbers of conditions that, at the moment, can't be actually tested for yet patients are insisting upon a diagnosis, and doctors are expected to come up with something. Patients are more informed, which isn't in itself a bad thing, but with that comes and expectation that something can be found and something can be done. And sometimes it just can't. But no patient wants to be the one who is told "we've got nothing for this".

A wider discussion on the limits of what the NHS or any health service no matter how much you pay can do is long overdue. But no government wants to be the one to kick this off, it sounds like failure not realism.

I really do need to read the book before ripping it apart to be fair 😆

Yes, getting the balance right is a never ending struggle. Autonomy is really important but can go too far and then you're doing everything a 5 year old demands.

Yes I have, and I listened to her on the podcast with a doctor ( I cannot for the life of me remember the name of it!!)

It's really interesting. Not sure if I agree or not...but interesting to explore the idea of giving a diagnosis and how that will affect a person.

In the podcast they mention fibromyalgia, something that cannot be objectively diagnosed as it isn't visible on imaging or blood tests... And they talk about the potential of getting labelled and then the tendency of some people to just give up and accept they cannot live a happy, productive life because they have this life long painful condition..it's all about what they cannot do rather than focusing on the times there is no (or less) pain... And the things that are achievable.

They also mention that in a lot of cases normal feelings and emotions, and behaviours...are pathologized (?) for example shyness is neurodiversity/social anxiety or bouts of sadness is depression when in actual fact they are just extreme ends of normal, human feelings.

I must admit if you search on here when someone posts that they are struggling with their child (naughty, Social problems, etc) there will always, without fail, be someone who suggests they are neurodiverse. There is nothing wrong with that, they may be right, but is it beneficial to just lump everything down to that and not try and tackle the individual "problems" as they crop up rather than just "ah lets give this a name and accept that this is how things are" Type mentality...

It's an interesting debate and worth a read/listen. I was surprised to hear that a lot of folk with parents with Huntington's choose not to test, but after reading the book...I get it.

Seeing as that happened to one of my brothers (and was nothing compared to the abuse that the three ND children received at her hands, by the way), I've got more than enough direct experience of inadequate parenting. Despite the many things that were undoubtedly down to her, it was not her fault that 60% of her offspring turned out ND, as 40% weren't (and it was 1 NT, 1 ND, 1 NT, 1 ND, gap - 1 ND, so nothing about age, greater or lesser parenting experience, more or less money - just genetics).

Same way that the NT offspring had NT children, the ND ones had children that were in turn diagnosed - but as parents, they were not inadequate, abusive or neglectful, they recognised the things that the children experienced and advocated for them to avoid the experiences they had at school - all the more important in their experience as a direct result of school being the relatively safe space compared to 'home'.

It's likely that a parent like that example is going to be enraged at the notion a child of theirs could be seen by others as being defective and refuse anything resembling assessment in favour of 'Why can't you be NORMAL?' and 'You just had to show me up, didn't you, you deliberately ruin things every single time, this is why nobody likes you', rather than going for an assessment and engaging with therapies or medication.

However, for your assumption that it would be inadequate parenting, I'd suggest that what actually happens is Mum is assumed to be depressed, anxious, mentally ill or potentially fabricating symptoms for attention/benefits. Particularly if she isn't obviously middle class in presentation.

@Smugzebra I should listen to this but will probably get very irritated.

I have a very fixed view on fibromyalgia and believe my viewpoint to be correct quite dogmatically 😆.
I have ehlers danlos syndrome, hard to diagnose, terrible lack of understanding and awareness and minimised by most medical professionals. This is potentially the real cause and not the non diagnosis of fibromyalgia.

A recent study demonstrated 50% of participants diagnosed fibro actually had small fibre neuropathy. I have that. It's highly associated with another notoriously misunderstood autoimmune condition called Sjogrens. Mast cell activation is another misunderstood condition causing high release of histamine which can cause burning pain and muscle pain. Again, I'd say that's more likely also.

So the people given this non diagnosis of fibromyalgia ( which doesn't make sense if you start quizzing professionals about what it actually is) in my strong view probably have one of the above.

That's one diagnosis where I'd argue all day as to how limiting and dismissive it is and therefore a ' diagnosis ' I would not want or ever accept.

It is really code in the medical profession for ' I don't know what's causing this so I'll call it fibro and can you fuck off now with these painkillers '.

Apologies if I'm misunderstanding your post, but when you say "people who don't appear to struggle as much" do you mean that high functioning autistic people do struggle as much as profoundly autistic people, but other people just don't see it because they mask?

@NeverDropYourMooncup

When you receive a medical diagnosis, I believe this should have a positive impact on a person’s life. Better understanding, better outcomes, knowing how to treat an individual.
With my son, before he started school - and seeing that he was struggling with his speech I sought an EHCP and assessment for autism.

Before his reception school had even met him, they wanted to reject his placement and assumed he was autistic. They presumed he had behavioural issues, once I did get his placement they presumed he couldn’t take turns. He doesn’t have behavioural issues, he could read and excels at maths, he loves taking turns. His needs are mainly focussed around his speech. He ended up not getting a ASD diagnosis - but a speech diagnosis.

I’m shocked that a school could attempt to reject his placement. The school have now excluded two other children fro his class. One child has come to my son’s parties and I see him outside of school. I never see him misbehave, but I’ve seen absolute fear when he enters the school gates - only to be surrounded by 3 members of SLT, one being quite hostile towards him.
I know of 2 children who wanted their EHCP removed before application to secondary school (private) because the schools would not take them with an EHCP.
I know of at least 3 children where a diagnosis has led to some extremely poor parenting : letting their child dictate what they eat, whether or not they go to school, whether or not they do homework, using screens for a large percentage of the day etc.
Yes, I’m all for medical diagnosis if it has a positive impact on a person’s life - but if it leads to exclusion and poor parenting - then how is it helping?
You would hope that better diagnosis would be leading to less exclusions and better mental health - but I don’t see that happening? And with a SEND system in crisis - something needs to change.

I 100% think it’s the adults that need to change. I think something that is woefully lacking, and sadly I’m seeing this is schools - is compassion and empathy.
I think compassion and empathy was a higher priority in schools 20 years ago - rather than funding, meetings, computer based activities, members of SLT who are not classroom based and don’t know their cohort of children, exclusions. It’s definitely all gone a bit ‘Animal Farm’ in schools.

I work for a voluntary organisation where funding is not the priority (we just don’t have much money), there are no computers, no meetings while the children are in attendance, we all work with the children, and children are not excluded. I think a few members of the group could potentially have a diagnosis, but we meet their needs with compassion and empathy - and adults who love what they do/love the children.

@Pleaseshutthefuckup in my experience, quite a few things are diagnosed by the absence of anything else. I've been diagnosed with vestibular migraines and mennieres disease and these are basically diagnosed by eliminating things like tumours causing dizziness.

There's so many things that medicine still doesn't really understand particularly around neurological disorders.

I'm also very likely to sublax various joints so have wondered about EDS but think I'm "just" hypermobile.

I read this book, and also Sami Timimi's.
There were parts I was not quite agreeing with but overall I felt it was a really good summary of some of the issues with diagnoses from mental health perspective, although a lot of people will disagree. Timimi also writes about identity vs diagnosis which is a whole different (but closely related) discussion.

So your child has zero behavioural isssues- none. Ditto the child with several members of staff needing to be attending when he arrives- they’re just around because he has an autism diagnosis. 🤔

Sorry but you’re talking bullshit and blatantly scaremongering. Schools do not exclude simply on the basis of a diagnosis, ditto refusing EHCPs. Your little survey from your nosing into children you allegedly see does not know all the details.

An EHCP is a legal document, which means that the school named in it must legally accept your child and offer them the support outlined in the EHCP. If your child's school is refusing to take them, despite being named in their EHCP, you should speak to your local authority and seek legal advice.

No, schools cannot refuse to accept a child due to a diagnosis. While they may not be obligated to immediately provide support based on a diagnosis, they cannot deny a child admission or education based on it. Schools have a statutory responsibility to support pupils with special educational needs and disabilities (SEND) and should not wait for a formal diagnosis to put support in place.