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?

For all those saying it’s society’s “fault” for not being accommodating enough, how would you have it change to accommodate absolutely everyone? I’m genuinely interested in this because no one ever seems to really have an answer.

I was diagnosed autistic as an adult. I struggled hugely at school. This was back in the 80s/90s. I didn’t go at one point for a couple of months as I just refused. I was very intelligent and ended up getting all As in GCSEs but then couldn’t cope with college etc. Do I think if I’d have been born now things would have been much better? Absolutely. It does sadden me to think what my life could have been. But no point dwelling as I can’t change the past.

But these days there are a lot more accommodations made and obviously more diagnoses. Yet people still say ND people can’t cope (in fact, seem to cope even less) with the world as it is. So I’m just wondering honestly what would people want to change to be able to accommodate every single ND person/trait?

@Sammii82 what would I change to help? Well education pathways definitely need more flexibility. When our young people are set up to fail by the current gcse grading for maths and English. The lack of ‘trade or hands on’ skills training from a younger age 11+ not 16-18 when the damage and disengagement from fixed formal education has been done. Finland start formal learning later and have many more movement and fresh air breaks within the day.
Really interesting watching the Scandinavia Simon Reeves prog where he talked about Trust within society and how much happier generally they were. However i was shocked by the bombings in Sweden.

@Sammii82yes I am interested in this too. My experience of make adjustments for ND people in the workplace has been that the the other staff have to be a never ending source of support to the detriment of their health and well-being.

I listened to her on a recent podcast and it really struck a chord with me. I found out around 10 years ago that I have a genetic condition that causes all sorts of ill effects that increase with age. The medical profession knows very little about this condition and there is no treatment.

Although finding this out explained a lot about what I had experienced in my life since finding out I have hyperfocussed on every little niggle which has made things so much worse. I feel the knowledge has completely blighted my future and I would rather not have known. My anxiety has soared, affecting my sleep and likely making the condition worse.

I also have to watch my Dad (who has the same condition) degenerate with the knowldge I will likely be next. If we has not known about tge future outcomes I think we could have both remained much more positive.
open.spotify.com/episode/650rviBXKWiEn84DvSHyPc?si=0Op0CT0fQpuGjPnOkxVmTQ

I recently read/ heard that roughly 6% of the population are ND -at present 1-2% are diagnosed.
If many ND people are diagnosed and medicated or given support for their problems more should be able to work and pay tax.

Ive often wondered about the medication for Alzheimer’s neither of my DPs or other family members got medicated or diagnosed, it was assumed it was dementia and nothing offered, although they only had it short term. Apparently there are medications that slow the progress of the disease -no doctor has mentioned this.

A lot of people talk about their "struggles".

Isn't that just life though? Why do we have to medicalise the normal range of human difference/variabililty? There have always been people who struggle academically. We used to just say they were a bit less clever at school. In the past those people just left school earlier, It was perfectly well recognised that you could be shit at school work but good with fixing cars or plumbing or baking or caring for kids and that was ok.

There have always been people towards the edges of a normal distribution in any area. Humans are all different. Some have poor social skills, some are crap at maths.

Notice that as the school curriculum has become more demanding with more testing and accountability and less flexibility to just be bad at stuff & drop it as soon as you could.... more people have received diagnoses that facilitate extra support to try and help their square selves squeeze into the increasingly rigid perfectly circular hole available. Maybe the holes just used to be bigger and more types could fit.

I've read this book and found it very interesting. It really helped me understand issues around testing, and how diagnosis is about much more than that. She is an excellent and kind communicator. I really think there is something in the issue of mindset affecting perception of health after diagnosis.

One disease she briefly mentions is PCOS. I was diagnosed 35 year ago with it. She has made me reflect on maybe some of the limits I have unwittingly placed on myself post diagnosis - for years I accepted that being overweight and mildly depressed was just part of the disease. In the last year I have worked with a really good therapist and also a orivate nutritionist and been able to make some great changes to my mood and weight, changes that I had thought impossible because of PCOS. Us humans are complex.

The school system is a big reason and problem. We are an ND family, both my husband and I really struggled at school and struggled to find our place, and we are both 'classic underachievers'. Its been much harder for our 2 youngest kids- primary school is unbendable and unrelenting from the start, teaching pointless made up grammar such as 'fronted adverbials' and forcing children from 5 years/year 1 to sit and work for long periods of time. The curriculum is too rigid and schools are on their knees with funding. The EHCP system is the only way schools can actually have enough money and resources to help children, as a side note, and in the current situation not having one shuts the child off from any help at all. The idea of the government taking them away is terrifying.

I definitely agree that there should be more options for children to start other pathways earlier. Forcing non academic children to study certain subjects until 16/18 is pointless and they just end up feeling like failures. My father left school at 15 to go straight into an apprenticeship. I definitely agree these sort of things should be an option for more children. Not just ND children though. ALL children should have the option if they are not academic.

The issue with people’s suggestions for how school should be, including things like “movement breaks” and more play time is that for some ND children they will hate that. I was a very quiet child. Hardly ever spoke. Didn’t have many friends. I can’t stand chaos and struggle with noise. (Even as an adult I now wear headphones a lot). My worst part of school was the break times. Sitting at a desk learning was the best part of school for me. I mean maybe if I was diagnosed the school could have helped me with making friends. But the fact is, I didn’t enjoy doing what most of the other children did. I didn’t enjoy running around a lot and screaming. So yes the school could have forced them to include me, but it still would have been forced which as an adult realising that wouldn’t really have made me feel any better.

There was a thread on here ages ago where parents were talking about the accommodations the school has made for their children. One said their child had a clicker toy they could play with and they were allowed to stand up when they wanted. I (under a different name) mentioned that if I was sat next to a child constantly clicking something and standing up and down all the time I wouldn’t have coped. I was told I was disgusting and was excluding ND children and if that was the case I would have needed to leave the classroom and be educated elsewhere if I couldn’t cope and it wasn’t the other child’s fault so they deserved to be in the classroom. So the accommodation for one ND child would have excluded another ND child. But apparently that was fine? Sadly it is always the quiet children (ND or not) that will end up losing out.

I honestly would have loved a tiny class that just sat in silence and learned. It would have been perfect for me. I would happily have self excluded and just sat by myself and learned. The problem is, by putting all the “quiet and academic” children in a class together only the school would get accused of excluding the more noisy children. Even though it was the quiet children who self excluded. You can’t win that situation which is why I honestly want to know how people would solve this?

But equally... BPD is diagnosed much more so in women than men. It doesn't necessarily mean it's more prevalent in women. When women behave in ways that are stereotypically male, they are called feisty, impulsive, difficult, Karens, reckless, promiscuous etc.

Women asserting boundaries are dramatic, reading too much into things, overreacting, too sensitive, crazy, divas, princesses.

Women get treated like shit and told it's their fault, or that it didn't happen like that, or it never happened at all.

Women have a need and get told they are unreasonable to expect it to be met.

I can't help but feel that in some cases, diagnosis is just another way of telling women they are the problem.

I found it very interesting and she is very sympathetic to all the individual patients she describes. She writes a lot about how diagnosis has widened from a few, more severe, cases, to now encompassing people who are more mildly affected.

She also writes about screening for cancer, which is something I’ve been thinking about as my dad recently underwent radiotherapy for prostate cancer in his mid-70s. There’s no national screening for prostate cancer and it’s extremely common for older men to have slow-growing cancers that may do them no harm, but he has every test going and then some, so it was picked up.

I also appreciated Suzanne’s thoughts on how medicine has become very technologically focused, whereas what people are often craving is someone who will take the time to listen to them. My mum used to say that medicine had become too obsessed with ‘sexy’ procedures at the expense of routine care.

Years ago I read that the breast screening costs doesn’t justify the number of lives it saves. However I was one diagnosed with BC by the routine mammo only.
I can’t see any Gov stopping it.
We do seem to follow the USA with treatments but of course theirs isn’t state funded.

@FrodoBiggins

This sounds interesting. From my experience, my son one NHS paediatrician who was going to diagnose Autism without a screening. I insisted on the screening and a different NHS paediatrician said there was insufficient evidence for Autism after the screening.
I had a school who were convinced DS had Autism and were attempting to reject his placement.
He is now 6. He definitely has a speech delay and receives very good support for this. His speech is targeted rather than an assumption that he is Autistic and getting the wrong sort of support.
So yes, from my experience there is a definite risk of over/misdiagnosis.
In fact I listened to a recent Radio 4 Women’s Hour episode where a dislike of ‘labels’ for children was stated.

If a label/diagnosis actually helps a child and improves their quality of life then I am all for it.
If a label leads to assumptions, exclusion, misdiagnosis, overdiagnosis, giving a child incorrect support - then it’s ultimately detrimental to a child and an incredible waste of resources.

I’ve seen lots of people recently saying that they’ve been diagnosed as an adult with ADHD and it’s really helped them - previously they thought it was just their own personality / failure to be able to focus, but meds and appropriate strategies can make a huge difference.
I know about the Ritalin scandal of overprescribing with US kids but I think that under-diagnosis and lack of support is probably more of a problem here in general.

Hmm slightly sceptical about the OP which has a ring of somebody pushing their own book.

Also the author’s ignorance re ND is palpable. Ignorance re ND is huge throughout the NHS and quite shocking, it is an issue from consultants to receptionists. Hence the NHS rolling out widespread training on the subject. The author of the book doesn’t seem to dispel evidence of this. I lost her on

”In children diagnosed with moderate or mild autism, there is plenty of evidence that diagnosis can be beneficial, but there is emerging evidence that it also comes with significant harms: a lowering of self-esteem, a reluctance to attempt things because of a perception that being autistic will make them harder. In adults, there is scant evidence of either benefits or harms from the diagnosis itself.”

Its laughable. There is no mild or moderate autism. You have to reach a threshold re symptoms that impact life significantly. You either are or aren’t.There is a reason 70% of people with autism are out of work or massively underpaid in relation to skills and qualifications and struggle massively with mental health.

I am late diagnosed from a long line of inherited autism with a grandfather continuously in and out of Psychiatric hospitals with no reason why, to me having it impact my whole life and being vaguely aware of ND to all my children massively falling to pieces in early teens and being diagnosed early. . The difference between them getting early diagnosis and none for my grandfather is massive. I have lived before diagnosis and after for both adhd and autism. Re the “scant benefits” she didn’t look far-I have sat in endless forums,on a peer advisory board, support groups ( including NHS), courses etc and the benefits of diagnosis is widely recognised and discussed. I can tell you that living with a diagnosis is massively helpful. The struggles are the same but it has given me answers, ensured my kids get the right treatment and aren’t over medicalised, given adjustments, informed, given strategies, boosted confidence, given access to treatment and meds…I so wish I’d had both diagnoses earlier myself. The author clearly has no lived experience and a book to sell so has ignored a massive amount of evidence.

Then we get to the stats themselves and well recorded info which she has decided to ignore. On the subject of ADHD it is well known that diagnosis for autism and adhd were heavily gendered for years. So many lost and ignored women and girls. ADHD. Chris Packham spoke to an expert on his recent ADHD documentary who says, 'Well, yes, there has been a great rise in the amount of people seeking diagnoses, but actually we're still way behind'. Six percent of the global population is. And at the moment, it's only one to two percent of people have been diagnosed. This is well known. Why the hell having been ignored for years shouldn’t women and girls seek diagnosis?

Only somebody with zero ND lived experience or expertise and a view to push( in this case for money) would write such rubbish.

The U.K. school system is generally accepted to be very focused on academics and our teens are some of the most unhappy in the world.

on that basis almost any other school system (the Canadian one is often held up as an example) would probably be more accepting of difference.

other countries do seem to have better systems for organising support for kids that are struggling.

I’m a late diagnosed autistic and my diagnosis was one of the best things to ever happen to me.

I think it’s very easy to sit there criticise when you’re not one of the people who struggled for decades because of a lack of diagnosis.

@L00pl00p

I was in a situation where one paediatrician wanted to diagnose ASD and take DS off the screening list. I insisted on the screening and a different paediatrician said there was insufficient evidence for ASD.

Thus concerns me greatly. Especially as DS’s school tried to reject his placement at age 4.

He now gets support for specifically his speech, and has made huge progress at school. His caseworker agrees that he is right for mainstream schooling. He is now 6.

Diagnosis itself is not an issue if it can help the person better understand themselves and learn coping mechanisms to manage the symptoms.

The issue is that it is too often nowadays used either as a label to undermine the person, or on the other side, an excuse to justify any poor behaviour.

The latter is the problem society needs to get on with to change.

This.

The slightest ,behaviour (that might have a number of reasons) triggers a comment of adhd or autism now? It may be, it may not.

The number of adults celebrating their autism wearing it like a badge totally ignorant of the challenges faced by individuals who aren't just showing some behaviour but struggling with their all encompassing autism, non verbal, never live an independent life, no partner or children and daily massive struggle. When the adult married with children and holds down a job rocks up, with the 'I'm autistic too'.

I’m really onboard with this!

I have an autism diagnosis.
I need and rely on that diagnosis to help me accept myself in a world that rejects me for being “odd” or “weird” and to help me explain to my employer or to services why I need reasonable adjustments in processes that are too fast and unsympathetic to the way my brain works.
I do have plenty of strengths I can bring to the table and that my employer benefits from once my adjustments are in place. I own a home and pets and contribute to the running of that with the support of my DH.

I definitely think if the world was less fast paced, intense and judgemental, it’s possible I wouldn’t need or have ever sought out the diagnosis. But I was 24, repeatedly rejected from jobs or fired for things like “not being a good fit” or asking questions about things that didn’t necessarily work but I didn’t realise people didn’t want to hear about because I couldn’t read the room. I was fired from one job when I told the manager (honestly) that some of the tasks made me anxious, I was 20 and no one trained me. Post diagnosis I’ve been at the same employer with reasonable adjustments and the diagnosis able to facilitate conversations (and ‘protect’ me) for nearly 10 years, always scoring well in reviews. I did nothing different, the diagnosis protects me and it helped my employer put me in a position that suits my strengths.

Except that people with those conditions aren't necessary struggling academically. It can be quite the opposite. My child was at least 5 grades ahead academically. It only helped them fly under the radar because if they were so bright and getting on just fine, all the other things were ignored. Didn't have poor social skills either.

I'm not crap at maths btw. I just need some extra support. I actually have a processing problem with it. This is evidence for my (undiagnosed ND), though I've also known ND people who achieve top marks across the board. I was top of every class with minimal effort - except maths. I wasn't allowed to say I was crap at maths or had trouble with it because I got told it was my own fault I wasn't performing the same in maths and I just had to get over it and I'd do just as well as every other class. What a difference it would have made if my teachers even just accepted I was crap at maths (even if they didn't know about dyscalculia), rather than bully me about it. With actual support, I'd have followed my dream career path, so a diagnosis would have served me well.

I suspect in the past there were professions that suited ND people who weren't academically oriented more and the education system has made it harder, I believe. Way back not everyone stayed at school as long and they could go into suitable fields of work with less qualifications demanded. Even if it was working the fields, tending the sick informally, learning a trade.

Of course you probably got plenty of ND women who were a bit 'different' burned as witches too.

Comments don’t equal a diagnosis which are hard to get. The thread and book is about diagnosis.

And do jog on with your “When the adult married with children and holds down a job rocks up, with the 'I'm autistic too'.”

I’m a married adult with children and a minimum wage job even though I have a degree and have experienced a lifetime of struggle due to my autism and ADHD. Marriage and a job don’t negate massive struggles and aren’t without the struggles to hold down .My children all have autism and adhd and struggle massively in varying ways with their all encompassing autism as did I. Two are heavily reliant on services and all can become non verbal at times. I sincerely hope that with the right support all will have jobs and maybe partners eventually.

Since when was it decreed ND people can’t have jobs or partners?

That’s your anecdotal experience of the benefits of diagnosis which I’m sure many share. Maybe there is a lack of evidence for the benefit of diagnosis in adults in the research literature and that is what she is referring to?

I understand your view about there being no mild or severe autism, and it’s just yes or no. And why “high functioning” is no longer used. But in my view this is pretty political and doesn’t reflect the blindingly obvious fact that autism affects people in vastly different ways. And perhaps those families with a loved one with autism to a degree that they cannot live without lots of support may be upset when their experiences are implied to be equivalent to someone holding down a great job, has a family but is a bit awkward. (Yes, I’m simplifying to make a point, but it’s one the author illustrates with her own powerful anecdote)

He is 6. Often the shit really hits the fan the further into the outside world you go and falling to pieces in early teens for ND people is common. I so wish my dc had had their diagnoses earlier than their teenage years. I’d have prepared them better, made different choices and been more alert to dangers. ND young people can be very vulnerable .