Who's read 'Age of Diagnosis' (overdiagnosis in Long Covid, ADHD, Lymes, autism, cancer screening)

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.

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.

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 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?

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'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.

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 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.

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

@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.

@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.

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?

I'm looking forward to reading it and agree entirely wuth the rigidity of social structures like school and the demands made on individuals which wouldn't have been there in the past.

I also think that neurologists as a group are very interesting and unusual people - especiallyin the UK where there is a relatively tiny number managing vast caseloads. I find what makes people head for a particular speciality in medicine intriguing.

My theory is that it is a backlash, that society could feel comfortable about itself when the number of ND people was thought to be 0.1% or less. But as that number has risen, and those previously “quirky” people you have known throughout life are now included…
And it is now seem to affect women in far larger numbers, and maybe explains a lot of women who were shut up in previous generations or received various treatments for mental health (I know 2 women who received ECT, who both received late life diagnosis, and another diagnosed with BPD who I suspected was ND).
I’m not sure how society reacted when it was realised that far more people were left handed, when it ceased to be oppressed. But Society is resistant to change and doesn’t like to feel guilty for past/present mistreatment.

Within my family at least 3 generations all have ND minds but none of us were diagnosed until it got to mine and my sisters children. it explains a lot I struggled my whole life to “fit in”,

However now the current school system can not cope at all with bright intelligent children who don’t fit the box. Both mine and my siblings children have an autism diagnosis 1 boy 1girl and yes the boy got his diagnosis aged 4 and the girl aged 11. The boy managed to stay in mainstream schooling with a lot of support achieving grade 8-9 on all GCSEs. The girl was forced to leave mainstream schooling into HomeEd and has mental health issues. If she had been better supported earlier could she have stayed in education longer? This pattern is being repeated weekly I see mum’s mostly asking on HomeEd groups about autistic academically able young women completely unable to cope with life & school. It’s not easy to get a diagnosis but even with it our society isn’t accommodating for those who aren’t “NT” when actually I think it’s 50:50 just not recognised.

Maybe because they take an interest in contemporary medicine and society? Surely you don't have to be directly affected by a phenomenon to be interested in it?

Why are people who are unaffected by these conditions concerned about "overdiagnosis" of them?

I have not read this book, but can offer a personal perspective in 2 ways. One, I am waiting for a referral for dyspraxia and all my life I have struggled with things that fit this. People may think ND conditions are being overdiagnosed, but there are some of us who have struggled in life, all through school, and never had a suggestion of any testing. Then again it was the 90s/early 2000s and school age people weren't assessed like today. It has been a struggle feeling different, bad co-ordination, struggles with maths, memory, sports etc. People do need to know what they have, why it is happening, how it affects you etc rather than being left to muddle along and have no answer when trying to explain to people. Secondly, my family has Huntington's disease. It is ton not don at the end. The condition hit my family 30 plus years ago out of the blue with a sibling to one of my parents developing it. They were misdiagnosed for a few years. It obviously was hidden in previous generations from my grandparent too and my grandfather showed a few signs we passed off as old age. People don't think of it being hidden and then a relative develops it and it affects so many. My parent also sadly developed it and passed away after 14 years. I almost got tested, but felt it was not the right time as I was a carer to my parent. If you want children it is only fair to know first. I am going to first deal with my dyspraxia assessment and then look at testing gor Huntington's. I do not have children but my sibling does but had them before the proper diagnosis of our relative happened. I do not agree with overdiagnosis or what is the point of knowing if you have a currently incurable illness. There is a decision you can make on that, but I won't go into it on here. People need to know especially with alzheimers when you plan for care.

I don't know what the evidence says about overdiagnosis, hence my interest in the subject. I understand people feeling defensive but Ponoka7's pithy reply was uncalled for.

I think it's the use of ' over diagnosis ' in your post.

Out there, in the shadows, it's apparent that it's much more likely we have a problem of under diagnosis and mis diagnosis, such as borderline personality disorder, especially in women ( no shocker).

Publicly, we have a rhetoric perpetuated by numbskull politicians that this whole thing is just over diagnosis. That's part of a political agenda to pull resources away from those who need it, as usual in our current system. The public will perpetuate it further with little knowledge, understanding of what's really going on behind the scenes here. It's another thing to jump on in order to blame something for the problems in society.

There's nothing concrete at all to suggest anyone is over diagnosed. I've sat in on an Autism assessment following the NICE guidance. There's no way this is easily mistaken. No way at all. It's a myth and a bias based on the personal life experience of us living it.

Are you looking to defend yours?

Are you looking to confirm your bias?