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

In what way?

www.bbc.co.uk/news/health-65534448.amp

I’ll pass thanks.

I would too, it was a very poorly-written review.

So The Critic is a right wing “modern magazine” funded by a Tory party donor with Toby Young and Peter Hitchins as contributors. I’ll pass thanks.

Meanwhile the BBC reported last week how ADHD is not becoming more common thus illustrating how misguided said book is as regards ND in particular.

www.bbc.co.uk/news/articles/cg5vp62dnnro.amp

For those who don't want to follow the link, the conclusion:

"Artistically, The Art of Diagnosis has a lot going for it. There is a reliable narrator, a rich cast of characters. With its intriguing narratives and ever-shifting perspectives, readers will find it a most thought-provoking book."

The book's been reviewed here https://thecritic.co.uk/im-afraid-the-news-is-not-good/

@Ormally

I don’t think education has made great strides. I’ve seen a huge shift in behaviour management being the responsibility of the school by ensuring good differentiation, visible/consistent teachers, visible headteachers, clear behaviour policies, never hearing of a child being excluded to - today : where this is a huge rise in diagnosis (which SHOULD help but I don’t think schools are equipped to help), a SEND system in crisis, unclear behaviour policies, a high number of less qualified adults doing the most demanding work (whereas the most qualified consistent adults are often not in their classroom or not classroom based), a record high number of exclusions, funding not going on the basics (provision for children) but spent on non-classroom based SLT (often in meetings/on computers)/fashions (brain gym)/initiatives/glossy laminated signs and worksheets/paper waste/the latest shiny IT accessory. I think it’s very sink or swim - and a job that should actually be one of the most rewarding jobs around has got people in complete burn out.

But the thing is, getting causes or treatment wrong has always been part if medicine. I mean, to start with, cancer was thought to be a psychological illness. MS we now know is linked to an infection with EBV. Etc etc….

Thats not getting the diagnosis that has a negative impact. It’s our (not yet fully formed) view of what the illness is about, how to approach it etc….

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.

I've been thinking about this question. I think there are downsides about pursuing a diagnosis of the conditions in the first paragraph, because there would be a sense of the individual knowing that something was wrong enough in their body's performance (and often something deteriorating) to affect their life, but not necessarily knowing what exactly without proper knowledge of how the symptoms work. If you are in an age where these things could prove to be greater 'danger zones' than at other times, such as pneumonia for older people, then it's more urgent to get a correct diagnosis or to deteriorate very seriously.

And a lot of health conditions may not be identified completely correctly, first time, although some markers in medical tests have now become extremely reliable. The medical treatments are broadly safe and effective, but lifestyle adaptations may also be important for success, such as weight loss, protection from severe cold and damp, etc.

The 'controversial' illnesses have often been attributed to other causes that have gone through stages of looking to be simple answers laid at the door of the one who sticks out, but then being debunked (to a degree, but without being totally thrown out). For example, e-numbers etc. for ADHD. These may worsen reactions - make the effects very obvious - but through developing knowledge, have turned out not to be the root cause that can be 'cured' and forgotten. Lifestyle adaptations, adjustments, and a treatment that can be calibrated to help will steer many to a more manageable life, even though it's not as easy as it sounds to work out a good combination.

What schools and stress/regulation demands seem to aim for, though, is that someone's ND or 'controversial' traits have the least visibility, or inconvenience, to the general whole, and not the individual, no matter what the environment and pressures of its effects. It's changed for the better since, say, the '80s and earlier, but I'd say it's not made great strides.

Autism and ADHD have been recognised and ‘treated’ for ages, not just since they were discovered by TikTok. Ritalin as an ADHD treatment was becoming more widespread in the 1980s I believe.

But I guess you are right that it is still early days in this new wave that is triggering the debate.

Surely it’s very early days in the treatment or support of people with adhd or autism.
The crazy outcry about all these people claiming to have/ being diagnosed with one or the other or both - so many don’t believe it.

Demanding that we have the vocabulary to differentiate people is pointless this early. And being annoyed or offended because people aren’t using high-functioning or whatever some person has decided is the correct term for some people but with no clear definition is madness -give it a couple more years.

I expect that the more we insist on the binary view of ND vs NT, or binary interpretation of the diagnostic criteria in general (you're either autistic or not, it's not a spectrum, you cannot possibly have ND traits but no diagnosis), the more pressure there will be to minimise any differences within those groups. It's ironic that neurodiversity suggests we're all different and unique - as long as we stick to our neatly labelled boxes....

@TigerRag

I think the issue there is the ‘lumping in’. A school or organisation or workplace is highly likely to have employees who are not qualified to understand sufficiently, apply their own stigmas or seek to put the needs to their organisation above the needs of the individuals within it.

A ‘label’ is there to - hopefully - support the needs of an individual, but in my case - I think the label was used as attempt to exclude without proper justification.

I think more specific definition within that label could help and a label that is too broad could lead to stigmas and misunderstanding.

I also read an article stating that if we continue diagnosing at the rate we are, what is currently considered neurodiverse will become as common as neurotypical.
I absolutely think that schools need to change to accommodate this.

My son’s preschool was very accommodating. They knew about PECS, widgits, now and next boards. There was excellent communication with parents and advice given : support services, links, agencies and websites to check.

My experience of mainstream reception was the opposite. No knowledge of PECS, almost a ‘fear’ or not knowing how to use it, the book was abandoned after a few weeks (despite subsequent training), a SENCO who avoids me and has used outdated language (e.g the term handicapped) - and has been extremely hostile when I asked to see evidence of his SLT targets being implemented.

While I think funding would help, what absolutely needs to happen is HOW funding is being spent. Much as in Maslow’s Hierarchy of Needs, basics must be supported first : supporting the needs of the children in your local community. Before spending thousands on the latest shiny new IT accessory which becomes obsolete or broken within a couple of years.

The focus needs to be on NOT excluding children and meeting individual needs.

Schools need to change to accommodate more neurodiversity : not children being told they are ‘wrong’ or ‘need to change’ or ‘we can’t support your child here’.

But what about the huge in-between of severe and "mild"? I'm nothing like friends of mine who do hold down full time jobs, etc but I'll be lumped in with them even though diagnosis wise I have very little in common with them

@offnick

From AI :

Potential Consequences of Overdiagnosis:
Misguided Interventions:
An incorrect diagnosis can lead to interventions that are not appropriate for the individual's needs, potentially causing harm.

Reduced Access to Appropriate Support:
Overdiagnosis can obscure the real need for neurodevelopmental support, potentially leading to delays in accessing appropriate interventions for those who truly need them.

Labeling and Stigma:
A diagnosis of autism, even if inaccurate, can carry social stigma and have negative impacts on an individual's self-esteem and social interactions.

I’d say my son has definitely experienced misguided interventions. And then also stigma : resulting in the refusal of a school placement at age 4. My DS struggles with his speech - but verbalised “there’s something wrong with me” a couple of months ago. I’ve always gone out of my way to ensure he has good self esteem, is praised and celebrated for who he is - so where has that stigma come from?

@KabukiNoh

From a Guardian article :

“ It has become apparent, not just to scientists but to many in the community, that autism needs dividing into separate conditions, starting with the reintroduction of Asperger syndrome, as an important differentiator between mild and severe variants. Contemporary autism discourse and research are both skewed in favour of the verbally able autistic population at the expense of the most vulnerable and, with the growing popularity of the neurodiversity concept, this gap is sure to increase. “

Yeah I kind of thought this way for years didnt get my mental health sorted properly and ignored the da t that I have raging adhd
got to the point I wanted to off myself every day and let it get worse and worse until I could barely function and woukd work look after my daughter and cry every day
until I woke one day accepted my issues got a diagnosed accepted I needed to medicate (which I never believed in) and now I have a quality of life and it has saved my life. I just think this kind of attitude can be very dangerous for people who are poorly and will maybe read that view feel ashamed and not seek help! We are in an age where we have awareness and support. Why do we feel ashamed? Why does this Suzanne care so much that people might be getting the medical help they need?

Again true. But still you have not been able to answer my question. Agree one should not be making assumptions about (autistic) people you don’t know. But their families, or the person themself, probably could make a reasonable judgment and consider they may be more or less autistic than another autistic person they know well. 🤷‍♀️

But you don’t know how much is down to learning difficulties or how much support tjose who present differently are having or how they are at their worst or how they will be. You can’t just look at autistic people and make decisions about people you don’t actually know.

I can really relate this to this, our situation with 9yo dd is very similar. And I also am inclined to agree with @kabukinoh It seems it would be better and surely possible to have a terminology that makes some distinction between such different experiences of autism, without losing sight of how a lot of the experience of being autistic can be hidden, or less obvious from the outside. I know we stopped using the term 'Aspergers' for good reason but it feels a pity we didn't replace it with another term to make a similar distinction.

Jerry Seinfeld years ago said in an interview he thought he might be autistic but then had to row back because parents of kids who were really disabled criticised him - understandably, they were angry with such a 'successful', independent person claiming that identity. But he still could be autistic of course. There needs to be more terminology to capture the differences

But then she has a total meltdown at the local park because she's been playing in the water play and has become distressed because she has no change of tshirt or a towel, and hates the feeling of the wet clothes so much that she can no longer think straight. She begins yelling, screaming and hitting. Eventually you manage to get her to the toilets and spend 30 minutes with her under the hand dryer and you remind yourself that this isn't normal for an 8 year old after all. And yes, I should have been more prepared at the park! That's our life - daily considerations and a succession of 'plan Bs' just in case we encounter an episode like this - and we don't always get it right, nor can you plan for every eventuality.

I remember this - constant trying to plan and ancipate problems and carrying so much stuff round with me - as Dmum had - and getting piss taken out of me my MIl for doing so.

Made me remember the great beach debarcle we had - moved nearer to sea and envisgsneted days at beach - had manged kids at beaches before but IL in mix making every thing twice as hard triggering kids - we rearly go to nearest beach though kids go as teen with mates and have fun.

Made me realise how many really bad experiences haven't been the kids issues as such but schools and wider family being completely and totally inflexiable sometimes coming across as almost goading - we know this is an issue but they need to suck it up - when they could easily just have avoided it entirely and then resulting meltdowns and fall out is blamed on us parents or the kids.

Whether you call it a 'variance' or not, these are still identifiable disorders/illnesses that have disabling side effects.

Having, for example, postviral ME and not calling it postviral ME doesn't make a sufferer feel any better - in fact it's worse because there's no explanation, no community, no understanding, no coping skills.

I was diagnosed late with ADHD. Before, when I thought I was just (and was called) useless, lazy, a daydreamer, immature - that didn't improve my functioning. I was frustrated that I wasn't able to 'just do things' like everyone else, and had no self-confidence. I was only able to improve when I was given the correct medication and find a community of people who shared support and coping skills.

Finally, no one is forced into a diagnosis or treatment. The criteria for a disorder includes impairment in functioning. If there's no impairment, there's no diagnosis.

The way I see it, with the increase of self identifying movement, the whole discussion around ND became increasingly more binary and (ironically!) rigid while diagnosis is not a 'yes or no, you either have it or not' process.

No, me neither, personally - it was more an example of why some may object to the term 'high functioning', because it may erroneously imply that they therefore face no/ few challenges. Of course it's not the same as a child who has extremely limited ability to communicate, but neither is it necessarily accurate to describe is as 'high functioning', since every day she meets multiple challenges that can throw her off. My dd's autism is definitely less severe though because, with ongoing help, we think we can arm her with the necessary strategies to function well in society.