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

4-7 adults a month is hardly a lot. The NHS picks providers and most adults will have had many years to mull it over with often dc diagnosed previously. I was fast tracked by the NHS however I will be doing right to choose with one of my adult dc who absolutely is autistic and has adhd. He has long not wanted either on his records but can no longer cope. All his siblings and half his cousins have it, he has the same family history and horrendous traits. He would get a diagnosis anywhere as I’m sure most of your 4-7 patients a month would.

So if all these kids are watching inaccurate videos it’s not really going to impact the diagnosis process is it.

ADHD in particular has suffered with the rise of misleading and inaccurate posts on SM, with hashtagADHD being viewed billions of times on Tiktok.

With studies showing that more than 50% of the most popular videos being misleading or inaccurate

.https://chadd.org/attention-article/adhd-on-tiktok/

And experts in ADHD saying so, it's astonishing to me that some people want to claim it isn't a trend.

Reducing a complex neurodevelopmental condition to '10 signs you have ADHD' on social media, most of those 10 things being experiences that the majority of the population experience, IS a trend and IS a problem when those people seek a diagnosis and get one from a shitty private clinic. Or are just self-identifying and going through life claiming a condition they don't have.

In 2024, the most searched conditions in the UK on the NHS websites were COVID with 3.7 million searches and second, ADHD with 3.6 million.

'Increased awareness' doesn't mean anything other than that people are bombarded with information telling them they might have a condition, and I include MN in that, where posts with extremely scant information are met with a reply of 'sounds like ASC/ADHD'.

'Increased awareness' doesn't mean increased understanding or literacy in the MH or ND conditions being mentioned.

And it is, and will continue to be damaging.

It bemuses me that many, many MN posters were understandably concerned about the rapid rise in children and adults identifying as trans/non-binary, often supported by diagnosis and treatment by medical practitioners and saw that as a damaging sociological trend influenced by social media but deny it happening when it comes to ADHD for instance.

Again misleading. The duty to make reasonable adjustments is absolute.

Case law has well established what can he considered reasonable.

Yes, every single referral getting a diagnosis probably does make me raise my eyebrows. I would think that as there will be a reason someone is requesting a referral, there is some issue that maybe makes it more likely that a higher number of people in the referral group would get a diagnosis, when compared to a similar sample size from the general population. But you'd expect for at least a few there would be some other sort of underlying issue identified.

And re GPS you say you didn’t have the expertise to even process ADHd meds and engage in shared care so how so much knowledge re the diagnostic process?

So so short sighted. Less right to choose means more pressure on the NHS and even longer wait times. Less shared care means even more pressure on ND consultants…..

I would agree with this - here you need a GP referral even for a private ADHD assessment. DD’s GP told her there was no point in a referral because she couldn’t have ADHD, her GCSE grades were too good. Then he said that she might have it but shouldn’t worry and should just think of it as a superpower. She was in tears trying to explain what her life was like. In the end he agreed the referral (probably to shut me up) and she was diagnosed.

I’m am not diagnosing ADHD or Autism, simply referring those who request an assessment. But my concern is exactly as you mention, that the process is nowhere near robust enough. To put it simply, I refer between 4 and 7 adults a month via right to choose (i.e. a private provider contracted via the NHS) for autism and/or ADHD assessments. How many of those referrals are either rejected or assessed and advised they do not have a diagnosis? NONE. That is really very concerning. It has now also been flagged as a major concern by the integrated care board, so this isn’t just based on anecdotal evidence.

This!!!!!

And yes in my experience GPs( along with a lot of NHS staff) are hugely ignorant re ND.

Wouldn't you rather patients have less time under CMHT, less hospital stays, less over medication, less suicide attempts, an easier access to work, less depression, more ability to focus with less dangerous impulsivity, the right treatments which lessens length of treatment…..

I haven't read the book, but I'm mildly irritated that it's been serialised on the radio rather than any of the several more interesting-looking books about disability by disabled authors that have been released recently have received no such attention. e.g. Frances Ryan Who Wants Normal? is an anthology with chapters from all sorts of disabled women. It's on the same display in my local waterstones, so clearly considered in the same kind of category. Or Rachel Chorlton Ramping Up Rights is coming out soon, about the history of disability civil rights in the UK - I bet that's not being converted into radio. I'd much rather curious non-disabled folks read something with disabled voices than something from some arrogant neuro who isn't even qualified to diagnose half the conditions she's on about.

I’m all for diagnosing if it helps the individual child cope better… and more importantly isn’t to the detriment of NT kids.

Well done, I guess, for admitting an opinion that I’m sure many on the thread share but few would dare to express. That ND kids may have their diagnoses and support as long as NT kids are not inconvenienced. Because ensuring no detriment to NT kids is more important than helping ND kids to cope.

But why don’t you want these diagnoses-is it the cost of the medication?
I would have thought that those undiagnosed on antidepressants are surely better on the correct medication or with counselling and no medication.

Nope. Still don’t understand what you’re talking about.

In my experience GPs don't really have a good understanding of autism and ADHD however, that aside, if the diagnostic process is accurate and robust, does it really matter if everyone gets an assessment?

They may push an exclusion due to behaviours and provision but not for a diagnosis. That’s ludicrous.

If the caseworker (overloaded) relies on what the school says and makes the decision to exclude - then I need the law. This is not easy at all - delays, DS out of education, fighting differing opinions.

@L00pl00p

Ok. The lawfully the bar is set high for a school exclusion. I believe the LA makes the ultimate decision.
My DS’s caseworker is completely overloaded. Emails are often not responded to, she is frequently on leave, she has never met DS, she relies on paperwork.

The paperwork I now realise has been woefully inaccurate.

Me - as a parent - if I do not know the law and fight, schools can push an exclusion - ultimately because they don’t want the burden of SEN children and associated cost (although the LA funds this) and impact on school results.

Looks interesting, tjanks op

You’ve misunderstood.

Reasonable adjustments must be made. If they can’t be made due to onerous costs they aren’t considered reasonable.

That isn’t due to an autism diagnosis though, it will be due to symptoms and behaviours.

I haven’t read the whole thread but I am a GP and myself and other colleagues have had real concerns regarding incorrect and over-diagnosis of Autism and ADHD via the ‘right to choose’ pathway for some time. This has finally been recognised by our local ICB and significant changes are afoot with regards to referral processes and acceptance criteria.

No. If it were possible, you'd row back to the times when it was widely accepted that individuals are individual - that everyone has quirks and peculiarities, everyone has strengths and weaknesses, nothing is all good or all bad. The bee in my bonnet is that we, as a society, are losing our capacity to self-adjust; forgetting how to be flexible and adaptable.

I'm not saying there's ever been an utopia. I'm certainly not wishing we had fewer pathways to the identification and treatment of illnesses / syndromes. But, if you'll forgive me, your assumption that it's impossible to have a set of societal expectations which would make everyone comfortable betrays your 21st century preconception that everything must be systematised, classified, defined.

I'm saying that's a misconception, and I'm suggesting it actually comes from an increasing need for computer-processable data (which does require precision). Yet people are not streams of bytes, you're more than a set of inputs. Look at how laws are written. Laws, not SAP modules, are how societies are regulated. Laws are beautifully written to take account of grey areas and context. Most societies, like ours, feature a built-in legal system that further refines the laws as further considerations become apparent.

It's not impossible; it's natural.

Because @Riaanna you posted to me stating this:

“So you don’t think an autistic person should have the diagnosis of autism?”

And my response was this:

When a person receives a diagnosis it should benefit their quality of life and the diagnosis should be an accurate reflection of a person’s needs so they get the right support.
A diagnosis should not result in an individual being excluded from society, an individual being made to feel there is something wrong with them or detrimental assumptions being made about an individual.

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 in this because no one ever seems to really have an answer.

I found workplace bar huge open plan office - easier than schools. DD1 been given a whole host of software that she finds helps.

But I've seen it said on here that ND kids are the canary in the coal mine and after DD2 last year think there something to that.

No toilet access she coped with but when it got so new super strict rules made it impossible to eat and drink in school day - her anxiety spike and spill over into everything else. She was noticable less stressed when some more experienced staff allowed eating in classrooms then the new rules were quietly dropped. Seating plans now being a thing post covid in lessons - putting her at back where she struggled to see and hear and next to disruptive indiduals rather than what I had some choice in where to sit.

It was always the ND kids or one suspect and sat on waiting list like DD2 who struggled first - as if the capacity to deal was just lower. Worst classes she struggled to stay in did okay in with alot of home support - but rest of class massively underformed - so looked okay but weren't thriving.

I suspect more kids need diagosises because schools and maybe some workplaces are now harder to manage with milder versions of some ND/SEN conditions when in past they could cope.

Plus people don't always know what the conditions actually are - DD1 was pushed to ASD by teachers - NHS experts no doesn't fit at all - inattentive ADHD another path more deplays to get past. I had same with dsylexia - people assuming it means I can't read or do well educationally - tested well even with reading just can't spell.