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

This implies that autism goes away when your environment changes - but it’s more the case that certain environments mean you don’t have to mask, and therefore you’re less likely to shut down or go into burnout.

Sensory overload is a huge thing for me so I’ve set up a business that minimises my triggers. I couldn’t do that in school or if I was forced to work in an office or a shop.

“Not being a perfect model pupil at age 7 does not equal ADHD” and wouldn’t get you a diagnosis.

We’re talking about actual diagnosis .

I am biased but I am SO sick of people trotting out 'over-diagnosis' of ADHD and autism.

There was no diagnosis of either condition, except at the absolute extreme end of the autistic specturm, for decades. So of course there will be a surge these days as a) children and teens get correctly diagnosed and b) adults who spent their lives struggling and wondering what was wrong with them finally discover why. That is three generations at least, catching up.

I was diagnosed with ADHD at 59. That was six decades of being screamed at for being forgetful by teachers and parents. Missing an A level because I forgot what day the exam was on, so getting a D when I was predicted an A. Losing friends, boyfriends and offending family because I forgot meet ups and birthdays, of being incapable of holding down a steady job. Getting into trouble on the underground because I forgot to renew my weekly pass. of Locking myself out of the house about three times a week. Spending at least an hour every day frantically looking for keys/phone/handbag/travel pass. Not understanding when people said in exasperation: just find a place to keep them and always put them there, because if I could remember to do that when I walked through the door, then there wouldn't be an issue in the first place. Having a chaotic, confused approach to cleaning and tidying, unable to keep on top of the laundry, missing dental and doctors' appointments. Double and sometimes triple booking clients when I first became self employed, and having to cancel at last minute. Getting truly depressed that I knew I was clever and talented in my field but simply couldn't manage the ordinary day to day stuff that went alongside it. Doing jobs sometimes for very long hours, worth a lot of money and not being paid for them because I forgot the final stage of submitting an invoice.

I could go on and on and on. I have had friends smirk and roll their eyes when i say I have been diagnosed. But since taking ADHD medication, I don't forget things. The constant noise in my head (a combination of very aggressive, negative self-talk combined with a weird noise which is like listening to people talking loudly while a television blares, through the walls of a cheap hotel) is gone. The food noise is gone.

DS was diagnosed with autism aged 12. It transformed his life. His brilliant school offered oustanding support, helping him socialise, so for the first time he started to make lasting friendships. All teachers were informed, so they knew to use very direct language (e.g. he used to get in trouble for not doing homework because teachers would say 'Finish that off in your own time or before next class.' He needed to hear: 'Your homework is to finish...' otherwise he had no idea it was homework. We helped him get super-organised. He is now thriving. he went from bottom sets to top sets, from profoundly lonely and low to surrounded by friends, from zero interest in hobbies to getting really good at something he loves, from zero confidence to a real knack of acing job interviews.

DH has not been diagnosed, but after sitting in on DS's lengthy assessment, he realised his answers, which he thought were normal, tallied with DS's. It has saved our marriage. I now understand him far better.

I see my niece suffer so badly, underachieving, deeply distressed and chaotic. It is like watching my own life all over again. But my sister doesn't believe in ADHD. I know Ritalin would transform her life.

It is so easy for people who don't suffer one of these below the radar illnesses like ME, CFS, mild autism, ADHD to sweepingly criticise over-diagnosis. Yes, the world is full of very different types of people. But we are not allowed to be different. There is an expected norm. That people don't forget appointments, do have the energy to keep on top of housework, or to do a 9-5 job every day.

It can't work both ways. It's not okay to say: stop seeking diagnosis. You are within the realms of normal but simply failing at being normal, which is what so many of us spent our lives battling with.

That documentary has since been scrutinised and criticised for poor journalism.

It is hard and very expensive ( if private)to get an autism diagnosis. ADHD diagnosis is expensive as is subsequent titration and funding of meds

You would only want either on your medical records for very good reasons.

The book sounds interesting. I'm a teacher and every training session I've had on SEND in the last few years has pointed out that many the strategies for making lessons more accessible for ND pupils almost always actually benefit all pupils, which is a good point. The same could be said about changing fundamental aspects of our school system.

I agree in principle with a lot of what has been said about our school system being unfit for purpose and over-focussed on exams. In many countries they don't have high-stakes exams until the age we do A Levels. However, I think people over-estimate how flexible it is possible for individual schools to be in terms of offering different pathways and options, due to staffing and timetable issues.

The thing I've noticed being pathologised is anxiety (and I say that as someone who has suffered it). Kids are learning that being anxious about something means that they 'have anxiety'.

I think there is definitely an over diagnosis of ADHD and Autism going on. I work in a primary school, and in the class of 30 I work in, the teacher and other staff are claiming that at least 10 of the children have some form of neurodiversity. There are 3 who definitely are ND in my view, however, the rest are questionable in my opinion- children are all different, having a little personality quirk, struggling to not shout out, liking learning facts, being a bit of a fidget, having a strong interest in something etc. do not automatically make you ND. Not being a perfect model pupil at age 7 does not equal ADHD.

I've not read the book, but I am skeptical. Claims of over-diagnosis of ND conditions smacks of the far right (eg Farage's claims). The increases in diagnosis, IMO, is the growing acceptability of being neurodivergent and the comfort people can get from a diagnosis so that they are no longer worrying about what's wrong with them and having to mask all day long, which is exhausting.

Since learning to recognise traits in undiagnosed children, I have become a much better teacher because I know which behaviours to ignore and how to steer children back on to the right path when they are exhibiting ND behaviours not conducive to the learning in the classroom. When you hear older people (Gen X or Boomer) say I hated school, I didn't get on at school etc, a lot of this is because their ND was not recognised and instead they were punished for behaviours they either could not help, or didn't not understand why they were not acceptable. I've heard that 1 in 100 children are ND, but I would say there are at least one in every classroom so these conditions are still being uderdiagnosed.

I’m staggered somebody could be so arrogant as to lecture to cancer, ND, Lyme, Covid…consultants and specialists.

She apparently thinks she has equivalent knowledge in all. 🤣

Our overdiagnosis epidemic - New Statesman

https://nypost.com/2023/04/24/doctor-who-broadened-autism-spectrum-sorry-for-over-diagnosis/

In answer to your question, A LOT of people want a diagnosis of ND. I used to diagnose adult ADHD as part of an NHS clinic which did great, multi-disciplinary assessments and because of the information required and the screening process before assessment, we diagnosed over the overwhelming majority of the people we saw.

And although with all psychiatric and ND assessments, there are personal biases and blind-spots in we may have got some wrong, I think we mostly got it right but the people who didn't receive a diagnosis were often very invested in the diagnosis and very upset to not be given one. I can think of only one person I saw who seemed relieved. Many people were upset, some were angry and some were threatening.

And quite often, the people who hadn't been diagnosed went to a private Psychiatrist to get a diagnosis thinking that would get them back into the NHS system. And quite often, someone had already got a private diagnosis to 'jump the NHS queue' into treatment by the NHS and were pissed off when the diagnosis was not upheld. Many were upheld though.

After the Panorama programme a few years ago expressing concern about private ADHD diagnosis, a world-expert in adult ADHD who championed the diagnosis and the provision of adult ADHD services in the UK, Professor Marios Adamou OBE said that in his NHS clinic, 50% of the private diagnosis assessments reviewed by the clinic, would not have recieved a diagnosis in his NHS adult ADHD clinic.

You need a lot of evidence to get an autism diagnosis and the wait lists are insane. One crappy paed who has since left doesn’t infer there is mass over diagnosis when the data doesn’t match that either.

And I've seen someone go from dropping out of university three times, to being diagnosed with ADHD, which enabled them to not only graduate but get to a PhD.

I remember listening to this woman be interviewed on R4 for her book "It’s All In Your Head" and recounting patient stories. Her faux ‘compassion’ was risible and, to me, her smug arrogance came through loud and clear.

On an individual level, I felt sorry for those who had her as their neurologist. More widely, it was depressing at the thought of the damage this book would do as other doctors read it and began to discount their patient’s symptoms as psychosomatic even more.

If only someone would write a book on the number of people harmed by having their unexplainable symptoms dismissed or minimised by patronising doctors.

And now she’s at it again with this new book. Yes, there are dangers from pathologising and over prescription but in my opinion this book, like the others, grotesquely overstates medical knowledge in understanding human illness and the human body.

@L00pl00p

Oh I think it could be very common with an under resourced NHS, lack of paediatricians, people being taken into the job with little experience, high turnover (DS has now seen 3 different paediatricians as 2 have left and been replaced), high demand, cost cutting, I’m 100% sure the reason to take DS off the screening list was to save money.

But there is plenty of evidence which she has chosen to ignore. She clearly has had zero interaction with all the professionals working In the sectors I listed below. Are you seriously saying the only benefits to ND diagnosis is extra time in exams? The ignorance is just laughable.

Urgh that old chestnut. Totally with you. My son has Coeliac and everyone has an opinion on that… I even had a family member tell me that nobody had it in their day eye roll til eye drops out

Such a useful viewpoint. I have witnessed a person who was capable of a PhD (started, but didn't finish) regress to inability to leave the house, entirely dependent on a caregiver and almost non-verbal s a result of 'possible autism'. Not even fully diagnosed. True iatrogenic harm.

She’s not an expert on cancer either. I know who I’d rather take advice from as regards cancer risk and it’s not a neurologist with a book to sell.

How dare somebody with zero ND experience lecture to those who have and particularly to a group( women and girls) who have been subjected to gendered diagnosis with the result they’ve sat hidden and lost for years. The arrogance of it.

Totally not interested. The moment I hear about 'overdiagnosing' I know it's ableist bullshit of someone who has not lived with special needs and tries to jusfity not diagnosing (because it's cheaper not to AND you dont need to provide support for people since they dont have a diagnosis). But I bet many people will read it and use arguments to dismiss SEN needs of other people because 'a neurologist' wrote it. It fits within your narrative OP- but that does not make it accurate.
I once med a pediatrician who told me allergies (my DD had a severe dairy allergy) are a made up thing, and I would not exactly quote the man as an authority, and yet he was a doctor.
There are multiple reasons why there are more diagnoses now than in the past and awareness is a big part of it, and the fact many much older people get diagnosed later in life with traits that were present their whole lives.
The end.

One of her important points is that IF diagnosis and the resultant help was beneficial, then it wouldn't be overdiagnosis. But there isn't evidence that this is the case. There hasn't been a correspondent improvement in outcomes (including adjustments for exams). And yes, there will of course be anecdotes about people who feel individually helped but high level data suggests otherwise.

Have only skimmed the review as am dashing off to work but what I skimmed was abysmal - ill-informed and lazy old tropes (no ADHD in my day etc).

Also: “O’Sullivan examines the growth in behavioural conditions such as autism and ADHD.” 🙄 Autism and ADHD are NOT behavioural conditions. Christ, do journalists not actually do any research anymore?

This!

Unless you are Margaret Thatcher who believes there's no such thing as society, then I imagine people are concerned because it affects everyone

It’s more like £3k and I don’t think many middle class parents have that spare either.

a neurologist can not diagnose or treat adhd - only a psychiatrist can - and adhd meds don't work if you don't have adhd - so I am wondering why someone who can't legally diagnose or treat adhd patients has weight to her opinion. if nd's showed up on neurolgist scans it would make life easier ... maybe she could stay on her side of the fence and research into that if she has interest in the subject.

Life is very stressful, synthetic materials, and unnatural environments. So I can see how someone could be diagnosed with adhd or high functioning autism when their symptoms wouldn’t be there if they hadn’t had such a stressful life.