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?

Agree with posters saying that actually, especially among women, underdiagnosis is the problem. The fact she covers so many conditions, many of which are outside her actual field of expertise, has my bullshit detector going off. Maybe because I know a few people diagnosed late who have massively benefitted from this new understanding of themselves. After a lifetime of beating themselves up.

This is a good critique www.susanmadigan.ie/overdiagnosis

I haven’t read it, but I did read about it the other day while browsing kindle store and have put it on my list to read. I am looking forward to reading it, although i do think a lot of people will be upset by themes presented. I’ll try to remember to comment again once I have read it.

Yes, I've read it, and I would once have agreed things like ADHD.autism are overdiagnosed, until I got involved with the realities of that community. I now think they are actually under-diagnosed, especially among women.

I was on a course a few months ago where one of the speakers made this very point. She was of the opinion that women and girls are often misdiagnosed with personality disorders (usually borderline PD or emotionally unstable PD) when they are actually autistic, and that this happens because those doing the diagnosis don't recognise that autism tends to present differently.

I have two nieces, one diagnosed with Aspergers and the other with EUPD. They have two half-siblings, one male, diagnosed autistic, and a female diagnosed with borderline PD. Made me wonder whether all 4 of them might actually be autistic.

In terms of global diagnosis, there is quite a marked disparity - with the UK pretty much comparable to other more individualistic societies. Collective societies are more prone to under diagnosis.

I think autism should have more than 2 types. My youngest is extremely autistic and emotionally delayed. However he doesn't have learning disabilities so he is considered to be what used to be Aspergers syndrome. My eldest is autistic as well but with no other problems. Very academically able and with a lot of support has been able to have a job and go to university. My middle son has autism and mental health problems. He can't look after himself but that's more to do with his mental health problems than his autism.

I don't think having 2 categories of autism is helpful (high and low functioning). Lots of people have autism with something else like learning disabilities, adhd, dyslexia, mental health problems, pica and the list goes on. Many people have 2 or more of these things.

Also I don't know how this would work but somehow we need to make it so the disability/health admin is easier. I've literally spent hours on the phone this week trying to chase up medication, test results and pip/dla forms. Then I have spent more hours filling in forms and gathering evidence. It's so hard and I have wanted to hang my head against a brick wall in frustration more than once.

What happens if an autistic person was severely autistic to begin with, then grew out of it? Or started out with less issues, then with the stress of life, the issues became more obvious and intense? what if they have high functioning traits and low functioning traits?

You seem incredibly dismissive of other people - is this the autism Olympics? It's actually not a zero sum game and you have no idea what another person's experience is like. I have a profoundly disabled niece, who meets all of your descriptions of someone worthy of diagnosis and care. However she's usually happy as Larry and is well-supported via public health interventions. Her autistic cousin who can read and talk and do all the things you think makes her less worthy of diagnosis and care recently was hospitalized after a suicide attempt at age 10. Her parents were banging on doors for years trying to get help, but even with diagnosis because she's "high functioning" none was available. The professionals all now so surprised this child reached a point of distress where she tried to end it - at age 10!! "Why didn't you tell us?!" FFS.

Pull your head in, you have no idea what you are talking about.

. Yet again it would be women and girls missing out- it’s well known that menstruation, childbirth ,
menopause are particularly hard for those with autism. Couple that with masking being more prevalent in the presentation of autism with girls and we’d be back to square one.

@Namechangedformyanswer where are you getting that info ref assessments and diagnosees being banged out?

For Autism, the ADOS assessment process is the standard according to NICE criteria. You can't ' blag' this. It's exceptionally thorough and multi disciplinary in most cases. The lack of true understanding and education on this is the problem. It's easy to get swept away in these stories.

Private clinics certainly are making a few quid out of all this. That's what private clinics do though. The reputational risk of dishing out a diagnosis just for LOLs doesn't make logical sense.

What benefit is it to a clinic to ascribe a diagnosis falsely? Show me one person who thought they were Autistic and were wrong? I never thought for one second I'm Autistic. I know I'm not. My son is and I sat in on an exceptionally thoroughly assesment.

Show me a person who thought it would be to their advantage to pretend to be Autistic and thus pursue a diagnosis?
You can't fake it easily if you're undertaking the correct type of assessment.

The problems we have in reality is the opposite. Stories of NHS pediatricians ' screening' and deciding no. This is bullshit. What screenings did they do? What did that involve? Was that ADOS based? I seriously doubt this. They probably made their own shit list with ' do they wear headphones ' ' do they line up trains?'. 🤦

There are some total numpties when it comes to this working with Autistic people all the time.

If they 'grew out of it' they were never autistic in the first place. You don't outgrow autism.

There aren't two categories of autism. There are three official levels, but even that's not so good at showing how an individual is affected. According to a leading specialist in my area, there are three key autism 'types' in terms of key presentation traits (as opposed to levels).

Functioning labels are rejected for a reason as they are based on what you see, not on what the person experiences. I know a so called high functioning person who took their own life. They had a job, they were doing incredibly well in life as far as society measures that, yet the toll it took for them to do that was too hard for them to deal with. They were actually low functioning internally but that wasn't able to be observed.

Not sure I agree it’s over diagnosis regarding ADHD & autism we have legacy of rigid systems and under diagnosis in girls and women persists. There are extremely long waiting lists (7 years locally for an adult 2+ child) so many struggle on with proper support and no access to medication.

ME/CFS, Long Covid hugely underfunded areas so lack of services for both support and treatments despite potentially devastating and severe impact on daily living.

Early alzheimer’s/dementia support can be given for example by specialist neuropsychologist.

I agree with first do no harm principle of medicine, but having an understanding and support for management of ones condition is usually helpful.

Do you think NT never worry about or overthink those things? Do you think all ND people experience all of those thoughts all of the time? (Genuinely)

I would have thought most people would do some of those in some situations sometimes, with a high degree of variability.

From my experience (and my own head really is the only one I can see into so i accept it's a small sample size!) I would say i have overanalysed all of those things on various occasions, especially highly stressful/public ones. Plus the classic "am I doing something weird with my mouth?" "Am I looking at this person's right eye? How do you look at both eyes at once is that even possible? Oh no I have completely zoned out to what they were saying" and not to mention my old favourite "am I boring this important person with my boring voice" (I'm from Birmingham).

But OP you are referring to random thoughts that pop into mind especially in heightened stress situations, it’s missing the point and not at all what @FrodoBiggins was describing.

I mean my sample size is also one (me). And while I sympathise with your experience of overanalysing things on various occasions, especially stressful ones, that doesn’t sound the same to me as being permanently on guard and watchful, and having this relentless questioning and doubting and commentary all the time, through every second of every social interaction, including with friends and family. Every single social interaction, all the time. Making mistakes most of the time, and when you haven’t made a mistake, suspecting that you have and haven’t noticed but everyone else will have. Having a vague feeling that there are whole layers of meaning in a conversation that everyone else gets but you don’t. Coming away from every social occasion with relief, even ones with friends and family, and never thinking - I enjoyed that. Best case scenario is - I think that went ok, I might have gotten away with it. More usual is a sleepless night of panic, remembering and going over and over all the mistakes.

The particular ND of my experience is autism and that has persistent deficits in social communication and social interaction as one of its diagnostic criteria. It is a defining characteristic of the condition. Symptoms have to cause clinically significant impairment in social functioning. So I’m not sure of the point of your post really. You seem to be suggesting that NT people sometimes overthinking things is comparable with the social difficulties of autism, which is pretty mind blowing tbh. Not to mention dismissing an autistic person’s account of their difficulties as within the range of normal. It’s not. If it were within the range of normal it wouldn’t be autism 🤷‍♀️

Sorry I forgot to tag the OP @FrodoBiggins🤦‍♀️

@Bowies

But if you compare globally, the UK does have one of the higher rates of Autism recognition and diagnosis. France is seen as being very behind.
I’d also say the UK does not come off favourably when it comes to mental health statistics. France is ‘better’ than the UK.

When I taught many years ago, there was not so much knowledge of ASD/ADHD. I taught children who probably now would receive that diagnosis, but I had no TA (primary) - and the onus was on me - as a teacher - to differentiate and ensure I gave the right support, with very clear behaviour policy and a visible, supportive headteacher.
I can remember enjoying teaching, not being bogged down by computer based activities and paperwork. I think behaviour was better, I can’t remember dealing with any extreme behaviours, I can’t remember any exclusions. I taught in an area with poverty.

The shift I’ve seen is - as soon as a child is upset or misbehaves (even at age 2) it’s almost presumed they have ASD or ADHD.

The teacher then treats the child as having a ‘difficulty’, tells the parents this and there tends to - almost a fear of not being quite sure what to do - and parents who have to navigate an extremely complex system with long waiting lists and insufficient funding.

The shift is from being : the way the teacher is dealing with a situation (therefore the teacher needs address the behaviour) to putting ‘fault’ on the child.

I think this is extremely damaging and could be resulting in the high exclusion rates and causing difficulties now in secondary schools.
I think a global comparison is important because - across the globe our rates would be considered one of the ‘better’ countries in terms of diagnosis. The big question is - is it working? Are we comparatively better off educationally/mental health as a result of our ‘better’ global rates of diagnosis.

My DD (14) is now at secondary school. I was concerned about her behaviour at primary, she was definitely trying to ‘rule the roost’ at home.

At one point ADHD was discussed with a teacher, but looking back I’m glad I didn’t pursue this.
I put in some extremely clear but kind behaviour strategies.

DD now has a very solid group of friends, is enjoying Duke of Edinburgh, no attendance issues, is revising and is on a high flight path.

If I had pursued the ADHD diagnosis I think this could have caused me to ‘excuse’ or not feel confident around the behaviour - and DD would have continue to rule. Ultimately leading to confusion (no boundaries), poor attendance (she would have chosen not to attend school) and no attempt to revise or learn in favour of social media/screens.

Do you think NT never worry about or overthink those things? Do you think all ND people experience all of those thoughts all of the time? (Genuinely)
As a ND person with social anxiety I experienced those thoughts all of the time unless alone or with family. Assumed most people felt like that - also had no friends to relax with as people steered past me.
Being diagnosed and medicated at 65 has been brilliant. I am more relaxed, understand my ‘failings’ and can socialise better but in a cautious way that suits me. Just a shame I can’t have a rerun of my life with the knowledge.

You realise social anxiety and ASD, ADHD are not the same thing? Lots of ASD people don’t give it any thought at all. It doesn’t mean they don’t have significant difficulties socially. I think you need to consider that your starting point here is fundamentally not understanding the conditions you’re talking about.

I think you have misunderstood that poster. I’m sure she knows that social anxiety and ASD isn’t the same thing.

The point being made was the comment on the ADHD charity website that ALL NT people can navigate ALL complex social situations with ease. Which is absolutely not the case. And could lead many people who sometimes struggle socially to believe they have ADHD when they don’t.

I knew a guy who was, and still is, on the waiting list for an ADHD assessment. So not officially diagnosed. But he lives his life as if he was. And tells everyone he has ADHD. In fact, it comes up every single time he does or says something he thinks is linked to it when from what I can see, they’re perfectly normal behaviours. You see on here all the time “I have undiagnosed ADHD” - what does that even mean? Surely if it’s not been diagnosed then you can’t be certain you have it. These people sometimes go years believing they have ADHD. What happens if they get assessed and they don’t have it? They have to unpick years of thinking about themselves.

I really do think people should at least give the podcast a go that was linked further upthread. It’s thought provoking. And keep an open mind.

Can you source the page please so I can read where it actually says that.

It wasn’t me that originally mentioned it. The poster said the author had mentioned it in her book:

This is a strong point made in the book, the author cited an ADHD charity website which says that "neurotypical people can navigate socially complex situations with ease"

It’s a shame this thread has proved so divisive and many seem to stick so rigidly to their viewpoint and don’t have the theory of mind to consider other things may be true at the same time. Diagnosis of neurodiversity was only a small part of this book and one aspect of a wider discussion about the meaning and consequences of ‘diagnosis’.

The author isn’t claiming to be an expert and better diagnostician than all those specialists in cancer, long covid etc. It doesn’t disqualify her from discussing wider themes that are seen across the field of medicine (though clearly some posters think it should). Obviously people’s views are shaped by their own experiences, but it should be equally obvious that other people may have different experiences which are also valid.

Which is not what you just said so already the quote has been altered significantly which takes me back to my original point - comparatively they can.