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?

There would not be a diagnosis without other evidence and traits. You don’t get a diagnosis just for being demanding or having Arfid. 🙄Do get off your hobby horse.

@L00pl00p

Interesting that another poster said ‘oh it’s you’ - when trying to put forward their thoughts.
This is an open forum where people can post and be on whatever ‘hobby horse’ /stance they choose based on their experience.
If you choose to sneer, ridicule, belittle that’s up to you. But it’s certainly not going to persuade me to think your views are coming from a place of kindness.

@L00pl00p

If you think I’m being a ableist then report the posts. I don’t think you’ll get very far.

You don’t seem to be able to debate in a reasoned way so I don’t think there is any point in engaging with you any further.

It’s a real shame when a well-reasoned, seemingly balanced debate/discussion gets derailed by petty comments and accusations

Oh like saying that a protected disability is down to poor parenting. That distressing life changing conditions and protrcted disabilities are just in people’s heads. I see no well reasoned discussion just sheer ignorance and obsessed hobby horse posters.

Literally nobody has said that

Are we reading the same thread?

Yes I believe so. Literally nobody has said “autism and ADHD is solely down to poor parenting”

Nor have I read anyone say “all disabilities are in people’s heads”

If you think you’ve read that then I would suggest you’re missing the nuance

EDS does seem to be behind so many of these weird issues. We desperately need the gene identified for type 3 ( hyper mobile) because the gaslighting and minimisation is really something else for many affected.

I totally respect any medical professional who says, I really don't know what's causing this. That would be better sometimes.

If you can’t see how offensive faux scenarios re bad parenting being the cause instead of ND and comments like below are then I’d suggest you are the one missing the nuance .

“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?”

My children having autism should not put my parenting in question any more than parents of NT children .

Literally nobody has questioned YOUR parenting. You do not need to be offended by that statement.

The poster is saying that, of all children who suffer from behavioural problems, that it is entirely possible that in SOME instances it COULD BE down to bad parenting. That wouldn’t be the same has having ND. At least that’s how I read it.

You have then taken that statement to mean that ND is down to bad parenting. And then got offended. You missed the nuance.

Nope my children,other ND children. The parenting of parents with ND children should not be put into question any more than those with NT children. Do you query the parenting of parents whose children have more visible disabilities?

You missed the nuance.

EDS does seem to be behind so many of these weird issues. We desperately need the gene identified for type 3 ( hyper mobile) because the gaslighting and minimisation is really something else for many affected.

We've not been diagonsed with EDS - but joint instability and skin fragility are in both problems in DH and my family. It's a weird thing that we just get on with TBH.

I was sat in meeting for ND with DD1 - and we kept saying well yes that an issue but's it's an issue for all of us and in end they had to keep saying well it's not in the general population. I think it often gets underestimated just how how much additional shit get normaliszed.

Same with ridiculous heavy period in my teen and 20s - 10 day heavy periods bleeding though everything - and GP would insit it's normal or go on the pill - and then have no libedo and high anxierty oh you've imaged that as well or occaioanally have an anti depressant. Then when you mention it on here people pipe up periods are normal - well yes but mine weren't or you should have gone to a GP - I did many different one many times over many years. You end up managing - till you can't or in my case till childbirth re-set things.

In my family I think we do more parenting than most "good parents" normally do - I'd actually say that was common with ND kids TBH or most of ones I see - still get blamed though doing not enough or too much.

You really aren’t getting it.
Of course parenting should be put in to question sometimes! Are you saying every single parent ever has always parented acceptably and there is never a need to question how people treat their own kids? That’s crazy!
I question my parenting all the time! Because I am trying to do the best job I can. I don’t always get it right and if I didn’t ever question it, then I would never try to be better at it

No you really aren’t getting it.

It’s not the parents of NT children that are having their parenting questioned.

I've experience of the EHCP process from the other side. What happens is when a consultation is opened, the school is sent the proposed EHCP in advance - which means that there is a lot of detail about needs and behaviours they have exhibited in their previous educational setting, along with contact details for that setting. So they can already see if they are likely to be able to meet the existing stated requirements.

Unfortunately, this sometimes means that a school has to say they do not feel they can meet needs - a class size of no more than nine, individual tuition, physical therapy being performed by a TA who is also a qualified physio three times a day, access to a therapy pool, the employment of three members of staff to supervise constantly due to a previous number of occurrences of escape or physical harm being caused to staff or other children, the provision of a lift in an old building that does not have one or the many thousands it would cost to install and maintain one, purchase emergency evacuation equipment, train multiple members of staff in the lifting required in the event of an emergency, that kind of thing.

In my experience, stating that needs cannot be met is not refusal out of malice, it's that the needs as described to them in the draft plan and as described by a previous setting are such that they feel it's not going to be successful and then the child and parent could be potentially stuck either unable to access education or fighting for an Early Review, making it even longer until the child is able to settle into what is best for them. I've also seen the trauma suffered by children who haven't been given the appropriate provision until it's completely broken down despite the school's best efforts because it wasn't the right place for them but the LA refused to accept the school's advice and pressed on with traumatising them to save the LA money.

We are always glad when a consultation is withdrawn because it means the child concerned is getting somewhere that actually meets their needs, rather than the cheapest option the LA tries to foist upon them.

I believe that diagnosis is intrinsically valuable because it's a fact, whereas withholding one is a negative as it creates confusion and a lack of clarity. Does a diagnosis of sinusitis secondary to coeliac give clarity instead of putting debilitating headaches down to being female and a parent? Yes, as it means I know to avoid wheat and take a Sudafed before putting an icepack on my face if I feel a twinge above my eye or my cheekbone, rather than take ever stronger painkillers. Does knowing that somebody has Tinnitus and moderate hearing loss with or without ADHD give clarity? Yes, because it means they have a 'good reason' to not want to be moved into an open plan office, rather than them being difficult - there is an authenticated reason why it would be intolerable and affect their work, rather than firing them for poor performance. What people deride as a label can be a shield or a standard.

This!

Most parents of ND kids that I experience have to and are going above and beyond what most parents of NT have to do. Their skills
are amazing - would love to see parents of NT handling severe sensory struggles, Eds, huge MH, difficulties,struggles with emotions, increased vulnerability, repetitive behaviours….. all day long every day on a loop.

Also re EDS another ND kid with it here. Alllll the symptoms including hypermobility, elastic skin,knees popping out of joints with excruciating pain….My dd is so fed up with judgement re “labels” in the media( she has several diagnoses)she won’t pursue a diagnosis. So we live with the fear and pain of dislocation.

The RFK Jr school of medicine seems to be very much at home on MN.🙄

I think this ideology especially for things like fibromyalgia is dangerous for people with health conditions. I don’t think people understand how exhausting it is. Maybe they want to use the little energy they have on doing something nice for themselves than working themselves into a grave.
There are things I could do that I don’t after my diagnoses of a condition because I am now aware that doing those things takes up so much of my energy and has such an impact on me that it’s not worth it. So I won’t be seen doing those things any more. I’m sure that applies to a lot of disabilities and conditions and it’s not a mind set but learning working within out of parameters so that we don’t push ourselves too much.
if an autistic person after their diagnosis is consciously aware that going on public transport or going into a shop takes a lot out of them, then they are more likely to avoid going there.
if there is an ideology that we could or should be doing more, that is going to be dangerous for people with these conditions

Rates of depression, anorexia, self harm and suicide are incredibly high amongst autistic people, so....yep.

I should have said "even 'high functioning' autistic people" there.

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.
Often it means that people are in the process of waiting years for an assessment.

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.
What, as opposed to having to unpick decades of thinking they are useless, lazy, clumsy, basically a failed human being? Which is a standard post- diagnosis process for those diagnosed in later life.

@NeverDropYourMooncup

https://educationinspection.blog.gov.uk/2019/05/10/what-is-off-rolling-and-how-does-ofsted-look-at-it-on-inspection/

Off-rolling is the practice of removing a pupil from the school roll without using a permanent exclusion, when the removal is primarily in the best interests of the school, rather than the the best interests of the pupil. This includes pressuring a parent to remove their child from the school roll.