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

Which is why you wouldn’t get a diagnosis for either with just those symptoms .

For me, this kind of attitude is betraying a (probably unconscious) bias against neurodiversity. A neurodiverse affirming approach means that being ND is in no way a fault - it's just a difference. There is still a way to go but this approach has been increasingly taken on by healthcare providers, maybe ever since the book Neurotribes came out. By correctly diagnosing a child as ND you're giving them a valuable framework through which they can truly understand themselves. The last thing it should = is 'finding fault with the child' - in fact the opposite is true. Without the diagnosis, the child has no means of not being found wanting (i.e. at fault) because basically the wrong yard stick is being used for them. I don't understand why some neurotypical people seem so threatened by the fact ND is being increasingly recognised. It's a good thing surely

Of course nobody would go for an ND diagnosis just for the hell of it. I firmly believe that anyone going to these lengths for help and support must be struggling and must need the help and support.

But consider, what if they are incorrectly diagnosed? What if their symptoms are trauma related? Or situational anxiety? But they’ve been told that the ND condition they have will be with them for life. What if it’s a mistake? What if they can get better but nobody ever tells them that?

But do people really go for a ND diagnosis if they are not at least concerned in some way?

Who would want a ASD/ADHD diagnosis unless they really needed it?

Who would put drugs in their brains or their children's brains unless they really needed it?

Who would have that on their medical record, it cause a lot of discrimination in the workplace and you can reduce the opportunities to be able to work and emigrate, so who would do this unless it was needed?

If there is overdiagnosis it might be interesting to find out why, what is the drive for people to pursue this?

Okay, so I wanted to rate this woman.

And am listening to the chapter on Poppy, (Autism) but she talks about how the diagnosis is not dependent upon scans/blood tests but is instead based on assessment according to societal observations of ‘what is normal’ and as these change, so does the diagnostic criteria. She’s a neurologist, so I did in actuality expect better. Yes, diagnostic criteria based on observable social and cognitive functioning is the main criteria within current assessment protocols, and unfortunately (not mentioned) it is largely based on research where 79%+ of those used in the devising of the questionnaires, in the inclusion and exclusion of specific traits, are male. So there is a systemic male bias within the diagnostic protocol.

However, despite this very recent neurological studies that DO use PET and fMRI scans and look at those diagnosed according to that criteria against those assessed as ‘neuroptypical’ show that there is significant differences in the brain function. Ie, there is scope in time to actually run tests using PET scans etc as part of diagnosing individual. And these evidence, therefore, that this is not about societal concepts of ‘normal’ or ‘typical’ but about the functioning of the brain on a neurological level. As a neurologist how can she ignore this?

https://medicine.yale.edu/news-article/a-key-brain-difference-linked-to-autism-is-found-for-the-first-time-in-living-people/

https://www.sciencedirect.com/science/article/pii/S2213158213001411#

I found these on a general google search, yet - not even with her access to specific scientific research and journals via her professional institution - did she look any deeper than her predetermined highly agenda-ed narrative. I will be returning the book to Amazon as I won’t even begin to consider her thoughts on cancer diagnoses if she can’t even get a handle on something that should be within the scope of her specialism.

I don’t mean grow out of autism I meant grow out of the severity of it so it doesn’t impact them as much later in life

Indeed. My ds's adhd specialist explained it to him that all the information is there in his brain, but the neural connections aren't firing correctly which is where the executive skills weakness comes from. If someone's neural connections are already working properly, there would be no perceivable benefit/ change. Taking medication makes those connections 'fire' meaning someone with adhd processes information better. It is very obvious to me as a parent when my ds's medication wears off. Before he was diagnosed, we had absolutely no idea what a difference it makes - for the better.

I think what she says in her book is interesting but humans aren’t good at convincing themselves that that niggling pain, unusual tiredness are nothing, that you might have the Brac2 breast cancer gene , as family members do, but will just put that out of your mind, they want to know!
And as far as I know there isn’t a programme of treatment for illnesses that are thought to be psychosomatic. So I don’t think she takes us much further forward.

🙄

Ime you need to try medications under the supervision of your psychiatrist -and you need to take it over several weeks or even months to get to the best prescription for you. Checking blood pressure, side effects etc

You pay privately for the medication and if you had a private diagnosis pay for each consultation as you try medication and each titration of that medication. It can mount to £Ks.

ime you don’t have a £700 appointment and merrily hop to your GP with a monthly prescription for the rest of your life.

No you’re not going to convince me and many more to take advice from somebody with zero expertise in areas she’s pontificating about to sell a book. Glad that’s clear now.

Several people here asking me what the Author means or, worse, completely making up what she has said.
If you want to retain your current belief that she is talking bullshit then knock yourselves out.
If you want to read or hear about something you might not agree with but keep an open mind, then either read her book or listen to her on the podcast that was linked. I thought she talked a lot of sense but I’m not going to convince some of you of that. And that’s fine.

This. I’d rather take advice from someone with specialist knowledge in said area.

Yes, and I think this is another negative result of the need for diagnosis. Sometimes a diagnosis means that schools/workplaces can say ‘ah, we don’t have the resources to help you with that’ and they manage you out.

Even in schools/setting where they are set up to provide support, if you don’t ‘fit’ with the majority of other autistics, for example, then you are still perceived as being odd/difficult. My eldest/DD was diagnosed with ‘Asperger's’ form of ASD, my younger DS has ASD with high anxiety. Their needs are very different. My DS was generally un-catered for because he ‘didn’t come across as autistic - are you sure they’ve not made a mistake?’ [Erm yeah, he’s just spent three days in a darkened room, in bed with a raging vomiting migraine after a 3 day school trip where he socially masked the shit out it], but my DD’s abrasive/rude/meltdown prone form of ASD/ADHD means they have always jumped to attention because they were terrified of an incident in the classroom and avoidant of having to manage the group to reduce anything triggering her [bullying]. She was encouraged to ‘study at home’, was given ‘authorised absence’ so that her attendance was not marked as low, but they don’t have to have her in class… a backdoor form of exclusion - dressed up as empathy and compassion - and only granted because she is genius bright and her exam results boost the schools…

The diagnosis has been both useful and weaponised. It’s a dual edged sword.

How does she know? She has no ND, cancer etc expertise or lived experience.

So I’m curious, what are the downsides of pursuing a diagnostics then?

Because let’s be honest, I’ve never heard someone saying there downsides of pursuing a diagnosis if you have type1 diabetes or a heart attack. Or even pneumonia, tooth abscess, sepsis, meningitis etc etc…
Its always about illnesses that could be seen as ‘controversial’, ones where people have or still are told to just pull themselves up by the boot straps.

She is merely selling the idea that all of those diagnosis aren’t real and if people really wanted to, they could have a normal life.
Granted, it sounds quite close to what our current government thinks. It doesn’t make right or real though. Just a reflection of her own prejudices, with a so called ‘scientific’ gloss

@CautiousLurker01

Except I didn’t get the empathy switch, I got the exclusion switch.

And as exclusion rates are at an all time high, I think many schools are prioritising funding and pass rates over empathy.

Well, no, she isn't - as long as it's her diagnosis of it all being in their head and they just need to think themselves better. Her 'case studies' are being used as a way of maintaining the Hysterical <whatever> position and denying people a diagnosis other than psychosomatic because she feels that encourages others to follow suit is something that harms many more people, particularly women.

This book came up at my supervision meeting yesterday (PhD/creative writing/motherhood and autism). I am mum of 2 teens with ASD, one with ADHD. Both late diagnosed. Will definitely download and read this book (alongside Timimi’s Searching for Normal, mentioned above).

For me the issue is not that it’s being over diagnosed, but the fact that you NEED a diagnosis at all in order to obtain the support, empathy and understanding. We all know/have known individuals who we thought were ‘odd’, that people avoided or tolerated because they were different. Understanding of neurodivergence SHOULD have led to a society where schools and society generally could think, ah, that person is probably on the spectrum… I need to be more tolerant, perhaps ask them if they need anything (desk in a different location, directions to a ‘quiet space’), I should tell the arsy bullies in the class/workplace to back off and leave them alone.

Awareness should have lead to more understanding and compassion… for everyone. A new default in social situations where we consider ‘individual difference’ with anyone we meet, be it ASD/ADHD, dyslexia, social anxiety, old age!! But no. If we might be on the spectrum [or have any other need for a little bit of social support] then we need to prove it with a 27page/£1500 report and diagnosis in order for anyone to switch on the empathy switch, for teachers to offer extensions for homework or even just to take a fricking second to check a child has truly understood the brief, for pastoral support to kick in and arrange exam provisions.

I agree (not having read the book, just the Guardian article and a bit about it on other sites) that we are in danger of ‘over-medicalising’ what should simply be accepted as neurological and social differences - but the education system, the way our society seems to have evolved in the last decade especially, just won’t offer compassion or support freely and responsively with out a piece of bloody paper.

@NeverDropYourMooncup

I think that’s an extremely good post.

I think the issue I had with my son was the assumptions that went with the diagnosis and those assumptions not being an accurate reflection of his needs.

A more specific speech diagnosis seems to be targeting his needs better.

I also think it’s shocking that one NHS doctor felt she had sufficient evidence to diagnose and another didn’t. This is wrong.

While you make a lot of good points, I think you’re misrepresenting the author. She isn’t trying to take away anybody’s ’right’ to a diagnosis. Merely discussing some of the downsides in getting one so that people can be empowered to make the right choice for them

Knowledge is power. Why does she want to take that power away from people?

If you know you have BRCA mutations, you have the power to decide what to do next, if you know you have ADHD, you have the power of knowing you're not 'just' unlikeable, too lazy, too unfocused, that there is a reason why you struggle with things that others expect of you - that you can't 'just try to be normal for a change' and that 'What the hell is wrong with you?' has a clear answer (beyond 'Fuck off' or being unable to speak at all when feeling attacked or on the spot, at any rate).

If you know you have an autoimmune disease, you can access DMARDs and biologics to reduce pain, inflammation and premature death. You can have adaptations put into place at work, rather than them terminating your employment because they don't accept that standing up for four hours after a full workday in the heeled shoes they determine constitute Professional Attire is unnecessary or unreasonable.

If people aren't diagnosed, there's no evidence that there is a need for research that could lead to cures and ongoing treatments that can turn a life destroying condition into something that happens to be there.

Even a throwaway comment earlier about there always being people who weren't as smart as others - why is the assumption that neurodiversity only means lower intelligence? The more people with average or above average intelligence diagnosed, the fewer assumptions that anybody ND is less intelligent and the greater the scope for those people to attain qualifications more in keeping with their ability through access arrangements and suitable adaptations.

Diagnosing conditions evidences needs that can be met and also be an advantage to others - the number of people requiring a wheelchair space on a bus has advantaged many parents with buggies, the numbers needing level access has resulted in adaptations to access that are at worst a neutral act for those who don't and could easily be argued to still be a net benefit, as it's safer for everybody to not have to go up and down uneven, poorly lit or overcrowded stairs with a slippery surface.

Who does she think she is that she gets to decide people don't have a right to know about themselves? It's a throwback to the no labels/I'm not having anybody know there's something wrong with them/they can be made to act normal/oh, the silly girl thinks she wants to know when we know better bollocks.

Ok, thank you for the warning 😂

Also not true it’s not just a psychiatrist that can diagnose ADHD.

from nice: ADHD should only be diagnosed by a specialist psychiatrist, paediatrician or other appropriately qualified healthcare professional with training and expertise in diagnosing ADHD,

the NHS itself uses ADHD specialist nurses as well as the above psychiatrist/paeds