‘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

There was recently a study, spectrum 10k I think it was called, where many participants where happy to participate, as it was about screening for the causes of comorbid conditions to autism, helping us understand autism better but it was taken to the regulatory body because the data could be sold on to third parties who had no interest in this area of research, ie. Verging on eugenics, and there were concerns about whether many participants could actually offer an informed consent given the nature of autism often leads to black and white thinking, and there is a spectrum of need and ability that could be exploited.

And I was exactly the same. That’s why that sort of statement always makes me sigh.

I think one of the biggest over diagnoses is anxiety - we’ve massively over medicalised the idea of normal human emotions. There are people who genuinely suffer from anxiety but there are plenty of others who’ve been told too many times that their normal worries and stresses are anxiety.

Theres a very interesting psychology study on it.

This is so true - and just doesn’t get discussed enough.

I don’t know what this could be referring to. Is it the rumour that the EHCP process may be watered down? If so, I think that’s an anxiety that’s come out of the fact that the Government is making noise about wanting to sort out the issues with SEND. But there’s no evidence at this point that this will happen at all.

I’d far rather have a Labour government looking at the system than than the successive Conservative governments that have repeatedly stripped funding, introduced the appalling Safety Valve Arrangements (now stopped by the Labour Government), and given us an education system that is crushing our children. If they end up causing even more damage I’ll be very upset but so far that hasn’t happened.

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

Why is that? One might expect that greater awareness would lead to easier times, not harder. Are we curating a norm where people who may have managed their difficulties in the past now don’t have to and so can’t?

he was of the belief that the overwhelming majority of children diagnosed with with ADHD had suffered ACEs and this is what triggered it.

My understanding is that ADHD shows up in the brain with a slightly thinner prefrontal cortex. This also occurs in CPTSD and developmental trauma, so perhaps there is some overlap with symptoms as well?

I do suspect that some people like to have a label, but so much about neurodivergence on SM makes me think I could be diagnosed (and I am certainly NT). Of course if you gen up on the diagnostic criteria, and it’s self reporting, you can probably get a diagnosis as an adult. But part of the criteria (certainly for ADHD) is that the condition has impacted your life since childhood. I imagine that not everyone who’s diagnosed in adulthood has struggled since childhood- although doubtless some will have- and I do suspect there’s some people who are jumping on a bandwagon. And some who almost certainly have a condition but have successfully managed it, and don’t need a diagnosis- could it be that the drive to diagnose means there are people who would previously have managed on their own and who nowadays expect adaptations and support? Not judging that one way or another but might it help explain the surge in diagnoses?

It’s adults who pay and get a diagnosis - I don’t know a single adult who’s paid for an assessment and hasn’t had a diagnosis.

In my experience, they only want to treat cancer when it's necessary.

Yes, people can live with low grade cancers for many years but at the same time an early diagnosis of a high grade aggressive cancer can be life saving.

There's also the fact that low grade cancers can become high grade and eventually need treatment which would be impossible to know if the person wasn't diagnosed in the first place.

Watch & wait is a very common option for low grade cancers.

I have heard that this is part of the problem with teaching mindfulness to children, that it creates this exact situation.

Interesting that The Times is running this article at the moment

No, but it would be interesting to see a random study where everyone has to undergo an ASD or ADHD test. I wonder what the rate of positives would be. My guess is 60-70%

Well, presumably the book is being published now, hence the timing.

There are very regular opinion pieces in the media about pathologising/over-diagnosing/everyone is ND now type things.

We have become over medicalised as a society, most doctors will agree. If you have depression, anxiety or any number of mental health conditions no one will ask what happened to you, you will be prescribed drugs and sent on your way. Ditto many other issues.

We are so strapped for time, resources and care - we simply take the fastest route to close down the problem, but it is short term, because the root issue is still there.
We need a completely different approach.

In Scotland you don’t even need a diagnosis. You can claim for the child disability payment as soon as a CAMHS referral has gone in, due to the waiting list. I have a colleague who has done so this year and been awarded for her son, and a cousin who’s waiting to hear back about her claim for her daughter. Both children potential ADHD but no formal diagnosis. That’s a lot of money, paid out for conditions that may or may not ultimately be diagnosed.

The problem is the doctors making wrong diagnoses.

professionals need to be aware of unconscious bias, accepting middle class parents request for diagnoses and ignoring the other parents who may not be aware of the possibility

Suzanne O'Sullivan is an excellent, compassionate and thoughtful writer so I will be buying this book - thanks for the share token OP.

The comments on this thread are completely supportive of her point about people seeking diagnoses as sn imagined unadulterated good. It is incredibly difficult as a Dr to have a nuanced conversation about this. There's a really old well designed study showing patients diagnosed with high blood pressure, compared with those who had the SAME BP but no diagnosis had increased number of sick days (not related to meds).

Diagnosis is absolutely not a neutral act. Sometimes it is helpful, sometimes it is hindering (though the diagnosed person might not think this) - it is complex and should always be a considered conversation.

And YES you absolutely can overdiagnose cancer. Prostate is classic, but true of many - cancer is not one disease and it is not known, for example, how some breast cell changes ('cancer') behave. Most people (both pts and drs) want to err on the safe side, but that may end up causing medical harms as well as an illness identity.

Please do not dismiss Dr o'sullivan or the Telegraph; this is such an important subject and she is a good person to tackle it

Yes really.

Sorry, the Times!!

My point was you dont need a diagnosis here either, not for EHCPs, not for specialist schools (unless their criteria is specifically for a particular condition), not for disability benefits, not for support in school without an EHCP

Its the behavioural need that is the criteria.

Yes there are services that work on a particular pathway where a diagnosis is helpful and/or necessary but not for benefits.

I didn't want my 20 month son to be given a possible flag for autism, although I had suspected that something wasn't quite right, he was my third child. I proceeded carefully, bearing in mind that in less than two years time, I'd be looking for school admissions.

He did get into mainstream school, part-time at first,we rejected the school for autistic children. But in either setting he needed a full, then statement of educational needs.

Regarding cancer, I know that over diagnosis exists. I'm torn about prostate and breast cancer screening though. Early detection is good but many cancers in this area do not need treatment but careful watching.

Re ADHD self diagnosed in adults, some are genuine but others use it as an excuse for poor social behaviour, such as nastiness in middle age - and the latter are constantly on social media.

My son was diagnosed autistic before he was even 2 years old, by the lead consultant in Greater Manchester and without any input from me at all (in hindsight, I had my head in the sand a bit, a HV referred him as soon as she met him) - this overdiagnosing argument is really gaining traction now and it's making me feel so uncomfortable, especially because at the age of nearly 12, i've worked so so hard (and so has he) to help him from the minute he was diagnosed, that a lot of people are genuinely surprised if i tell them he's autistic .

That is how it SHOULD work in England and Wales too. Some local authorities have stopped diagnosing children altogether with that as a rationale.

My friend knows a couple like this they treat their children absolutely appallingly they had their baby down for being autistic before baby was even born, neither of the parents have worked a day in their life both in their 30's quite capable of working 99% of what is going on is due to their parenting but yet they manage to claim DLA for all 3 girls.

You don’t need a diagnosis to get DLA in England. It’s based on needs and requires lots of evidence.

School support often comes with gatekeeping though, so “no we can’t do that here has no diagnosis” is common even though support should be needs-led. In truth support is just thin on the ground and rejections keep people at bay for a while at least.