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

Aside from the fact that I'm not convinced there is an 'overdiagnosis problem'... I see it from two sides. As a mother to two children with what would have been termed 'severe' autism (so very high support needs), I do have to admit there is a small (horrible) part of me that gets pissed off when the children of friends get a diagnosis, DLA etc and their children are fully speaking, using toilet, academically able, have some friends etc.

That said, another part of me is grateful that my children's difficulties were immediately 'obvious'. There was very little insinuation that our parenting was to blame like there is with lower support needs children. The reality of scaling back assessment/ diagnosis of the low support needs children however would just make things even more unequal for poorer demographics of neurodivergent people. All middle class people with a spare £1500 will continue to seek private assessment (which isn't going anywhere) and poor neurodivergent children really struggling in mainstream schools will continue to be seen as 'naughty not needy'.

I wouldn't have wanted ADOS for my daughters. There are reasons for that.

My (teen) daughter went through two full days of multiple tests and screenings in person, and I filled out at least 5 screening documents. It assessed for everything in case of differential diagnosis.

Even the spread over an IQ test can strongly suggest autism.

Gosh, emotional moment reading this. I’m the same age and I suffer from ADHD and mania, always have from a young age. Of course in the 70’s and 80’s I was called disruptive, fidgety, chatterbox, easily distracted, naughty, silly, etc etc.
I never managed with Maths and really really couldn’t get my body still enough to sit through an exam.
My whole life went a different way as a direct result of not being diagnosed or even aware that what was going on with me was an actual neurological problem rather than just a fidgety, talkative little girl.
I honestly believe that if I’d have been born 20 years later I would have succeeded and been able to achieve my dreams as child. But because I failed everything and everyone (I was an endless disappointment to my parents, they thought I had so much potential but was deliberately destroying my chances eye roll).. I never really did much with my life.
Since being properly diagnosed (in my 40’s) it’s devastating to me how easy it would have been all those years ago to help that irritating little girl to sit still, focus and achieve what she was capable of achieving.

So not common then- she left the job.

Needs should always be the priority on EHCP regardless of diagnosis and they often need amending hence the opportunities for parental views and them being available for review and discussion before publishing. His needs being met is nothing to do with whether he has an autism diagnosis or not. Many children with an autism diagnosis don’t have an EHCP.

Sorry, I meant to quote you ^

She talks a lot in the book about not understanding how screened cancers behave. We assume they behave the same as symptomatic cancers, but this is not a given. The section on BRCA muttions blew my mind - I had no idea how prevent they were amongst people with no family history of cancers and had made the classic error of assuming that BRCA was the issue not BRCA+family history.

My own opinion on screening (and I am an HCP) is that it is too thoughtlessly pushed and should be much more targeted. I have no family history of BC, am not overweight, have never smoked, never been a heavy drinker, not on HRT, late period and early menopause... ie NO risk factors for BC therefore I am not going to engage with the screening programme. If I develop a lump, I'll get help. But we don't know that any screened abnormality would behave like a cancer, so I'm not risking screening. Other women have different histories and different tolerance to risk, and that's fine. But the discussion should be a great deal more nuanced than 'get screened! You might DIE!!'. Sadly, as we can see from some responses, communicating and understanding nuance is hard.

This is worth a watch.

www.facebook.com/reel/1015742873816262/?referral_source=vod_deeplink_unit&surface_type=vod

A lot of autistic women are also misdiagnosed with depression and anxiety. I was in a burnout cycle for years until my own research showed me I was never actually depressed at all, but just massively overwhelmed to the point where I was unable to function.

I now have an autism diagnosis but it took me doing my own research and asking for help to get to that point - until then I was fobbed off with medication or even told that it was just my hormones

Neurotribes book is even more informative. The current division into level 1, 2 and 3 is still too broad.

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

@Sammii82 - Society's getting less flexible, I believe. We increasingly need to classify everything in tightly-defined categories. It's probably not coincidental that this is how computers need data to be organised: 'fuzzy logic' is a popular concept that literally can't be performed by machines; they can only emulate it by processing very many tight definitions and collating the result into something that looks like comprehension.

Fuzzy logic is, however, what human minds do incredibly well: we are flexible, capable of observing patterns and updating our observations on the fly, naturally aware of grey areas and highly adaptive. Creative, adaptive, fuzzy behaviours are anathema to data processing, so they are being defined and filtered. Hence the need for increasingly detailed descriptions and classifications of more and more aspects of human life.

I'm neither a medic nor overly interested in the matter of medicalisation, but can offer concrete examples from my own experience.

I'm 70. I have several diagnosed chronic conditions, one of which is ME-CFS. That's a diagnosis of exclusion and, since it has no known cure (or even cause), is a proper dustbin. In the 1980s I called it 'yuppie flu' and said it was an imaginary illness. Everybody did. All of my symptoms were attributed to depression for about 15 years, which led me to do ever more exercise. I pushed myself until I was developing all sorts of strange symptoms, passing out in the gym - and was given stronger antidepressants, with encouragement to keep up the exercise. Because fitness fights fatigue, right? Half of ME-CFS sufferers are eventually diagnosed by psychiatrists, as I was.

I'm still on the pills (being permanently ill and exhausted is depressing!) but the point of my 'journey' is that the need to apply a diagnosis led directly to behaviour that worsened the condition. In earlier times - up to and including my own childhood - this condition was known by vague names such as nervous exhaustion. Treatment, for those who could afford it, was a long stay at a country retreat, where gentle walks and mineral baths soothed the tired 'nerves' while regular meals and plenty of rest fortified the body. This kind of fuzzy thinking would've benefited me no end, quite possibly preventing the decline that has left me seriously disabled.

My brother and I are certain that we have dyspraxia and ADHD. Neither of us will seek diagnosis because it won't make any difference at our age. We can clearly see how we fit into these 'boxes' - failed schooling when we'd been pegged as shoo-ins for Oxbridge; endless weird travelling experiences because we couldn't figure out what to do with ourselves; the kind of erratic timekeeping that makes Mumsnetters spew hatred; so much more!

One might wonder how either of us managed to have the very successful careers we achieved, given our chaotic natures. Easy: we did jobs that needed creative, agile problem-solvers working in intense bursts with down time in between. All of our employers accepted our 'quirks' as part of the package. I never even got a warning about my abysmal timekeeping ... until the late '90s, when both my brother and I found ourselves colliding with rigid systems that had no space for mavericks. (My last boss actually called me a maverick. He meant it as an insult.)

With rigid systems and their rigid rules excluding everyone but the totally predictable, spaces are being provided via reasonable adjustment. I'd need a diagnosis in order to get the flexibility on punctuality and time off to rest. This would then label me 'dysfunctional' and would cause expectations of failure in areas where, perhaps, I may actually excel.

Thinking about our older relatives, we can see some who'd now be labelled autistic with their extreme social quirks, their extensively catalogued collections and their obsessive special interests. One of our uncles was always starting strange new projects, launching himself up & down difficult mountains on a whim, and loved staying up all night for a lively debate. ADHD, probably. None of these people needed diagnoses because they lived in a society that accommodated people's quirks, allowed them to play to their strengths.

Sorry this has turned out so long. I feel quite frustrated by this aspect of the 21st century, and am saddened that the concept of people simply being themselves is getting lost as we progressively comply with the requirement to define and classify ourselves.

I’ve read the previous one. A friend in research in on a project looking at just this and it’s something I’ve been thinking about for years. It’s not that you don’t have x or y from a clinical standpoint it is that “identifying as that” isn’t necessarily helpful and at worst limiting your life and affecting mental health. I see it in a lady who identifies as autistic, only for last 2 years, now whether she is is not the point, it’s that her self diagnosis has taken over her life, become an obsession and is limiting her because she can no longer do things because of asd (that she did for the first 50 years of her life) and worst of all she uses it as an excuse for rude behaviour, I’ve stepped back after knowing her 20 years

@L00pl00p

The NHS paediatrician who didn’t diagnose tried to do so without an ADOS screening. Assessments she did in her surgery were very ‘fumble-y’(e.g she did one and said she had the wrong pack), she told me she was new to the job, she didn’t speak to DS in a child-friendly way, and she ended up leaving the job. The second paediatrician has been far longer qualified, and made the diagnosis after I insisted on the ADOS screening.
I felt far more confident to go with the second paediatrician’s diagnosis.
I also feel this has been better for DS because his needs are now specifically targeted (rather than turn taking which it would be more of a waste of resources).
He is making better progress, people understand his needs better - and there is no longer talk of exclusion.
He is making great progress - so to me this is the ultimate goal.

Well it does. I’ve found all our NHS diagnosis documents hugely informative.

Care to link?

This really is ridiculous. It is under diagnosed.Minor traits don’t get you a diagnosis. It’s very hard to get a diagnosis. The waiting lists are massive and it’s very expensive. Who would want ND on their medical records by choice?

In the interests of addressing PPs accusation that this was an ad (fair point I posted in totally the wrong place!)

Ignore the thread police, OP. People can post where they like and posting it in AIBU has triggered an interesting discussion.

Didn't know it was on Sounds - thanks, I'm going to listen.

My son had speech therapy at 5/6. He was diagnosed autistic in his early 20s.

I haven't read the book, and I have no real knowledge on the ND issues. But I am fascinated to understand what she thinks about cancer screening, because I genuinely don't understand why it's pushed on us so much when there are so many caveats, unnecessary outcomes, overdiagnoses etc. It seems to me to be a massive con, but successive governments have bought in to it.

I would like to see autism refined into maybe different and more meaningful 'labels'. It's so broad now it doesn't really tell you anything about how someone is affected.

For me, the term Asperger's had meaning but that's no longer in use. It's what I still identify with most though.

And what if she was right? Having lived the other way round I’d far rather have had the diagnosis before my dc struggled so massively. There was zero benefit to not having it just added risks we could have avoided, delays in reasonable adjustments and correct treatments which would have been so beneficial, delays in meds, ignorance from professionals, the wrong education, delays in an EHCP, being massively let down throughout education, reasons for difficulties throughout childhood….. the list is endless.

There is also harm in delaying diagnosis sometimes though. It's a mistake I made.

I do sometimes wonder about medical screening. It can be life saving but it can do harm. My mother had surgery for something in her breast she could probably have lived with for the rest of her life not knowing about, and there's a high chance it would have never mattered.

@L00pl00p

Yes, but the EHCP directly impacts the provision that he gets. I realise his caseworker doesn’t diagnose - and has never actually met him! I feel now he has a speech disorder diagnosis, his EHCP is stating provision that targets his needs/better spending of scant resources.

Looks good.

I certainly think a number of conditions are being misdiagnosed and I have read interviews with senior psychiatrists, including those who were involved in changing diagnostic criteria for ASC.

Many also feel it has resulted in such an unexpected explosion of diagnosis that it's creating a loop effect where the criteria widens and widens to include traits that are seen in more of the population so then more people recognise those traits in themselves and others and seek a diagnosis. So practitioners see more and more people presenting with more 'minor' traits which then alter the conceptualisation of the conditions so more and more people get diagnosed and diagnostic concepts widen further.

The possible eventual outcome being that virtually everyone will meet criteria for ND conditions.

The explosion of social media content around mental health and ND, particularly ADHD contributes to the huge increase in people seeking a diagnosis or even just self-identifying. Plus celebrities with a book or show to promote, or who have just been in trouble for something, coming out with their new ADHD or ASC diagnosis which can often make it seem like every other person seems to be diagnosed with something.