‘Interesting’ article on overdiagnosing in Times.

[Soontobe60]

Just putting this here for discussion.
https://www.thetimes.com/article/9f82545c-57f5-4db2-8a47-9a8cc2304243?shareToken=c0f809004b0c59cf1b96f6b6eb6129c3

You first! What do you think?

I think that’s an interesting mix of fact and opinion, some of which is backed up by data and some of which sounds very ‘what I reckon’. I agree with some of it and I raise an eyebrow at other parts. I’m afraid for example the ‘kids in the 80s didn’t get any diagnosis and they were just fine’ type stuff sounds like she’s hammering out her thoughts on FB.

Are you?
What's your response?

As @ItisIbeserk says, it's a mix of facts/data and personal opinion. I also wonder how complete this article is, and whether the Dr's book will actually place a little more emphasis on the fact that, "a correction needed to be made" (in more accurately diagnosing people) than is implied here.

I found her comments on cancer interesting and they mirror my own. But I think people's lack of awareness/understanding of the impact of cancer treatment reflects the wider public health failing around education.

It's also refreshing to hear a Dr admit that some clinical work has no effect on outcomes.

But, I think it's a little too simplistic to say people are being overdiagnosed with various conditions (not just cancer). That may very well be true, but it is one part of a bigger picture and a failed system. If people were better educated on cancer and all that goes with it, they'd be able to make more informed decisions. If Drs were taught communication skills as a core subject for every year of study, they'd be better able to communicate effectively with patients, also leading to more informed decisions. If schools were better funded and not made to teach to exam results, we'd no doubt have happier, healthier, more well-rounded children and it would be easier to cater to those with differing needs within the same classroom. If we changed the concept of work so that people could work 4 days a week as standard, more jobs were part-time/job share, salaries reflected the cost of living, people with disabilities were welcomed and adaptations made without a massive fight etc., then more people with health conditions would be able to both manage their conditions and remain employed.

I think more should be made of her very accurate and pertinent point that more people being diagnosed doesn't mean more people being helped.

I think more should be made of her very accurate and pertinent point that more people being diagnosed doesn't mean more people being helped.

Yes, this was also the bit that resonated most with me. A diagnosis is often just a false dawn - I see it a lot on SEN parent forums with people desperate for a diagnosis because they think that automatically leads to support and it’s really sad (and frustrating). There CAN be value to a diagnosis but often it just leads to a whole new type of frustration. And that applies to mental health too. I (luckily) have no personal knowledge of cancer.

My response is, I’m not sure! I’ve read a couple of things from psychiatrists about over diagnosis of ND and how it’s disproportionality middle class white people that seem to get diagnosed in adulthood. However, as a SENCo for many years, I’ve been in a position in the past where I’ve absolutely suspected ASD / ADHD in a child but been dismissed. I remember a multi disciplinary at CAMHs where I spoke at length with the psychologist, and he was of the belief that the overwhelming majority of children diagnosed with with ADHD had suffered ACEs and this is what triggered it. He was very concerned that we were starting to medicate children living in chaotic families with very powerful drugs before trying to deal with the environment those children were exposed to.
I think I need to do some more reading from clinicians as clearly the shift has changed over time.
I’m also interested in the possible over-medication of things like anxiety, which is a physical response to an external stimulus. I’d like to see a more holistic approach to the treatment of extreme anxiety.

Have you had a diagnosis yourself of anything?

As a late diagnosed adult I found it immensely helpful in understanding myself and if I’d had this is my teens/early twenties it would have saved me from the self- hate of not knowing what was wrong with me and many many years of misery. I work now with ND young adults and feel really relieved and thankful they can now get the support they need because of an increase in awareness and diagnosis.

The comment above about it being disproportionately middle class white people leads me to think it is related to education/access to information and confidence to ask health professionals to help.

I find these kinds of conversations immensely frustrating because it always seems to be from people who have no personal experience of it. Why don’t we listen to the people who have been diagnosed, rather than academics?

I think this type of nonsense is dangerous...

Cancer needs to be caught early to have the best outcome and people with personality disorders and other mental health conditions can harm themselves and/or others if they don't have access to a proper diagnosis and medication early on.

Not surprising that a right wing paper would push that type of agenda though...

it is easier to gaslight patients and tell them than they are the problem rather than accepting that the NHS, mental health and social services are collapsing and need more support to meet people's needs.

@Maplebean Do you not think that the professionals DO listen to people who have been diagnosed? After all, aren't the very people carrying out the diagnosis? Unfortunately, with certain conditions, the diagnosis is based on self reporting rather than actual testing, so there will always be people who play the system, for want of a better phrase. When a child is still in school, then for an ADHD assessment for example, CAMHS will ask for information from a range of other professionals who deal with that child alongside the reports from parents with actual observations in clinic - school, childminders etc and therefore have a broader picture of how that child’s difficulties manifest in different situations. With a diagnosis in adulthood its very different as its generally only the person seeking a diagnosis that is seen by the diagnostician.
Surely we need to get to a place where certain ‘conditions’ are not seen as disabilities, but just differences and as such any accommodations are embedded in everyday life.
One example I would like to see would be to do away with timed exams in schools for everyone. This would mean that schools wouldn't need to play the system whereby children manage to get extra time because they have a certain condition. Actually, I’d like to do away with exams as we know them full stop, but that’s a different conversation!

An extract of her book and a review was posted in The Guardian in the last two weeks.

There is a letters page with responses to it https://www.theguardian.com/society/2025/mar/07/mind-over-body-the-trouble-with-treating-chronic-conditions

The letters agree with the quoted poster

I was told I HAD to pursue a diagnosis for autism for my youngest or he wouldn't be allowed a special school placement despite him being five years behind academically under SALT virtually his entire life and it being so obvious he was autistic agencies treated him as such automatically he "needed" a pointless piece of paper

Its not surprising and not a different view to many practitioners that Ive worked with/currently work with, increasingly worried about this. Of course this is shouted down by many on here.

I was diagnosed as an adult, but got no support. The diagnosis (ASD, no background trauma) did help me to understand myself and my mental health, which I have been able to “fix” using holistic methods by myself over the last few years, as the NHS standard (antidepressants, 6 weeks of talking therapy after a 10 month wait) left me feeling worse.

I have autistic children who also didn’t suffer trauma, but have clearly inherited it from both parents. Dd was supported but was happy to accept it. Ds couldn’t accept any support. There is a huge push of the whole ACEs thing, which doesn’t apply to the many autistic or adhd adults and children that I know.

I think right now there’s a major issue of life being stressful and high pressure (hugely throughout school, but then pressure to work for not enough to live on, fewer prospects for young people, destabilised society, access to dire world news 24/7, pressure to follow ideologies or forever be damned) which means more people cannot cope and any neurodivergence will be exacerbated, meaning in school more problems that lead to a diagnosis being more necessary because we all know that without it there’s no chance of support (even though with it there’s still only a small chance of support, and that may well be crap).

IMO the rise in chronic conditions, that predominantly affect women, are part of the same thing. Life is more difficult than it used to be. Plenty end up reliant on welfare and PIP, then regularly there are government motions that threaten to reduce these, which is terrifying if you’re in that boat, which leads to more stress which makes the chronic symptoms worse.

On the whole I agree with this from a pp:

”I find these kinds of conversations immensely frustrating because it always seems to be from people who have no personal experience of it. Why don’t we listen to the people who have been diagnosed, rather than academics?”

It’s so true. This echoes throughout society. The arrogance that means clever people who have never been through those difficulties tend to ignore those who live in it every day. The gaslighting that goes on from professional to patient is horrendous.

As for increased cancer rates from private all body scans - surely this is a case of you reap what you sow? 30 years ago we knew that a liver scan may show up a lesion that is likely to not cause any issues at all, so why are people now allowed to have these scans that show up all the potentials our bodies hold? Stop allowing people from having these scans, they create more problems than they cure. Anxious people are rarely settled by more reassurance from a dr, it just feeds the problem. I don’t see this as the same as rising ND numbers though, which I see as people struggling now where 40/50 years ago they would have been ok - less pressure, no SM, plus lots of other now stuff going on.

I think it’s ironic and very fitting that there are reports that the now government are looking at changing ASD/ADHD as a disability thus saving them money! Funny that this article has now came out hmmm

@TwinklyRoseTurtle I haven't heard that, would you be able to link to where you've seen it?

“I’ve been diagnosed” is a sentence starter I’ve become sensitised to as a preface to disempowerment and asking for info from peers.

A relative died recently. The eulogy was a walking diagnosis of autism. “He was a man who knew his own mind, he preferred his own company, a creature of habit, he would let you know up front exactly what he thought” no filter attached”.. and on and on. We have autistic children and other family members have autism. My own father, 2 of my own uncles maybe a 3rd likely had ASD. None of the last generation would be diagnosed and they had serious difficulties but got jobs, houses etc. life is much harder for those with ASD in this generation.

The kids in the 80's bit - no I wasn't fine, I had a hellish childhood that was just put down to depression (that medication never worked for)
it also answers why so many middle aged women are now being diagnosed!

(not aimed at you beserk, just quoting the comment)

I am not saying the article is rubbish and there may well be some truth there for some patients but I'm troubled by a doctor conflating a serious big deal disease like ME/CFS with someone being the "worried well." Even a mild case of ME by its very definition ( it has to significantly impact your life to be considered as a diagnosis) can be extremely debilitating, I was a "mild-moderate " case and it was horrendous, I struggled to even work part time, my memory and executive function were shot, my legs would suddenly be so weak they would give out under me, Sudden drops in blood pressure that made me feel I was going to swoon, my muscles were so sore, I felt I had been punched over and over, it took me weeks to recover from any kind of exertion. I looked normal but felt like I was suffering glandular fever, flu and a bad hangover simultaneously. Furthermore my blood tests showed abnormalities suggesting I had experienced a virus of some sort and which triggered it, this was some years after the onset. Worried well? They can duck off with that one!

As a culture, we have become more incentivised to pathologise. There are benefits that professionals are looking for answers to issues. There are also risks that having an answer often isn't a solution and the answer we get can be wrong.

I've been through the diagnosis and the mis-diagnosis journey multiple times. It can be nice to find an answer, particularly if something can be done, but having the same pain re-diagnosed 3 different times and personally finding how each one has changed how I was treated by professionals and also how I saw myself and the pain - which was in reality the same throughout - I can see how much of an impact diagnosis can have for better and for worse.

I think being mindful of the significant impact rather than treating diagnosis as neutral / simply fact-finding is largely a positive, and as others said, that more getting a diagnosis does not mean more are getting help or getting benefits or anything else that is often assumed alongside it.

The comment above about it being disproportionately middle class white people leads me to think it is related to education/access to information and confidence to ask health professionals to help

There will also be health professionals' bias, which is very important to acknowledge. When I was a teen mother with a young child struggling with communication asking for help, I got a diatribe on how 'every parent think their child is autistic' (even though I'd never mentioned it) and a letter from the local paediatrician to our GP discussing the impacts my foreign accent had on my child's speech.

Years on, I now live in a different part of the city, can hide my native accent better most of the time, and it's no longer obvious I was a teen when I had my first. A different child is diagnosed with autism after she goes to a SENDCo and asks to go on the assessment waiting list. Finally through it, and now we're strongly encouraged to have all siblings assessed. I'm not more confident in asking for help, if anything it's the opposite with so many bad experiences, my family just looks nicer on paper than we did back then.

What does ACE mean?

I work in an education, husband is a GP - we’ve both seen an increasing level of diagnosis of neurodivergence. The one thing we’ve both commented on is the strange coincidence that, specifically, private ASD/ADHD/other clinics never, in our experience, send a report back stating that a patient isn’t neurodivergent. That’s a 100% positive diagnosis rate, which is very unusual in medicine. Referrals through CAHMS/NHS tend to have a lower positive diagnosis rate.

Another poster, further up the thread, commented on how this seems to be a middle class phenomenon. This would fit with it being the private companies that possibly over-diagnose. I guess there a lot of money to be made from anxious parents looking for answers.

A relative of mine in his late sixties was diagnosed with a form of Leukaemia 8 years ago after a routine blood test but its a type that may or not progress. no other symptoms. He has blood tests every 3 months to monitor changes but so far it hasn't changed. in a way its good it was picked up but i cant help think the worry of it has ruined his retirement and last healthy years. if he hadnt known he would have enjoyed life more.

Over diagnosed with cancer. Really.

Aspergers was not in the DSM until 1987, so only the more severe Kanner type autism would have been regularly diagnosed before that, or autism that ran alongside learning difficulties.

As a high functioning (ie academically high achieving) girl I would not have been on the radar, because there was no radar even looking for me. I was diagnosed by one of the country's top specialists as an adult when I was 52

HOWEVER I do believe that there still may be overdiagnosis in Autism and ASD due to the fact that the demand is very high and that means that there are a huge number of possibly inexperienced people now undertaking the assessments, who are not easily able to differentiate between ASD and similar traits which would fall under behavioural issues. I know that is quite a controversial point to make, but it comes from the really indepth assessment process that myself and 3 other family members went through, and alot of discussion and explanation of how there often is overlap, especially with the trauma of living with unaddressed ASD the longer the period before diagnosis takes place, or that to an inexperienced person, then can superficially look pretty similar.