‘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

Thinking about it though, the issue with “over diagnosing” children - what does that actually mean?

Even without going through assessments and receiving a diagnosis there is still a major increase in behavioural issues in schools, school refusal in schools, both highly connected to ND. If we stop assessing these children the problem remains the same and possibly worse. The behaviour is there, then comes the assessment in response to that. I know a lot of SN families, not one pushed their thriving child for a diagnosis to get them extra support just to get the edge over others in the class. I mean that’s ridiculous. There are children in mainstream with high support needs who don’t get what they need!

This argument of over diagnosis means nothing. Maybe it’s time to forget this as the problem and focus on improving schools which would then ease the problem.

I have a friend who has become an ADHD advocate and is forever posting memes about how ‘neurotypicals’ think. She seems to think if you are NT you are a robot who never procrastinates, never faffs, never daydreams. And if you do any of these things she advocates seeking a diagnosis. She speaks in schools so no wonder rates are going up. We are losing sight of how variable humans are

Adults seeking ADHD and ASD diagnosis are showing an almost 100% ‘success rate’ ?
How can they be? How can it be that unlike any other illness … neurodiverse diagnosis is 100% self reported symptoms and has an apparent 100% ‘success rate’
from referral to diagnosis

I know someone like this. She goes about telling adults she meets they are neurodiverse based on them being forgetful or daydreaming. All perfectly ordinary human behaviour.

it’s disproportionality middle class white people that seem to get diagnosed in adulthood.

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

That sounds like a classic causation/correlation issue.

Let's say ADHD is normally distributed over the population (which is unlikely because the deficits mean it's more likely to be in poorer/less resourced families). Children with fewer resources and more ACE are more likely to get diagnosed because the parents can't finance away the issues. But also, chances are if the child has ADHD, one parent has as well. So are the ACE a chicken or egg, or a little of both? ADHD means a higher likelihood of offending. Parent offends = ACE. But that's genetic, not a 'trigger'.

The MC parents cover it up with money, time and resources, until the MC adult seeks a diagnosis.

I've been mulling this over a lot. DD got a very early diagnosis. She had classic boy type ADHD so it was noticed and diagnosed. But our tutoring and parenting and resources and management and tricks and tips and all that helped a great deal and means I doubt very much she would get a diagnosis push from school now. Some teachers look genuinely amazed she has it when told. She has learned to mask, code-switch and generally work with her ADHD. She isn't 'cured' though.

It looks like ACE 'trigger' ADHD but when I look at the children with the same diagnosis and ACE, they are much worse now than DD is. Because their parents can't throw money, time and resources at their child.

@Wildflowers99 - "everyone" may well think they have it. It doesn't mean they will meet the criteria for diagnosis.

Surely part the issue with private clinics diagnosing everyone with e.g. ADHD is that they are potentially missing something else.

From our family experience over diagnosis of cancer in the elderly is an issue. FIL was told he had cancer, but won’t they won’t treat it. Why was he a frail elderly man even referred in the first place? Do some doctors need to be better at discussing these issues with patients? Also does breast screening present value for money, particularly with all the women who are over treated and the harm that may cause physically and emotionally?

Pay privately and you suddenly will.

Hmm.

She's saying things are over diagnosed but the only actual examples are cancer screening and mental health conditions.

There's a hell of a lot of medicine missing from the article.

I don't think broken legs are over diagnosed for example. You get an x ray and it either is or it isn't.

Lots of other medical issues are also missing - malaria, heart attacks, brain tumors, multiple sclerosis, asthma, epilepsy, etc.

Does she think everything is over diagnosed or just cancer and some mental health conditions?

“We are losing sight of how variable humans are”

This is going on all over the place though, look at gender ideology, literally labelling people to match the little box they identify with.

Humans have been increasingly encouraged to do that for the last 20/30/+ years.

Increasing diagnoses is a symptom of the problem, given that “no adverse behaviour” would never lead to assessment.

The behaviour is there because government cuts took away special school places, leading to more severe needs in mainstream, where cuts were also made in funding and TAs, where increased adverse behaviour made it more difficult for those previously managing, who then started school refusing more, or acting out because they were disregulated, causing more problems for teachers who were also having to lose any flexibility in their approach to teaching and managing a class, in a system that became more authoritarian through a drip feed effect from academy rules, which made the disregulated children more disregulated. It’s not an over diagnosis problem. It’s a school problem. Everyone within the system is suffering.

I think these articles are arising because of the increasing costs to LA of SEND provision and the potential welfare costs.

If money runs out and further students cannot access any support in any school what exactly can you do?

So I think they are going to raise the bar to qualify for supported measures, or means test or something financial.

That’s not true though.

If you’re stupid enough to pay private and go to some spurious clinic then yes, maybe. But will your diagnosis be taken seriously by school or the LA? No.

In general though you go private you see the same paed and psych that work within the NHS, and the parents who go private have often gone through hell before taking that route. An NHS paed would not risk their license giving out falsified diagnoses.

She does talk about other health conditions including diabetes and high blood pressure.
Broken bones can in theory be over diagnosed it a small fracture that does not need any treatment, leads to the patient doing less exercise through anxiety.

I’m not sure what to think of this. I have a child who was diagnosed ASD at age 4, from my experience of the assessment and evidence required I don’t really understand how somebody could obtain a diagnosis without genuinely being NT?

TBH I would like to see more research on what causes ASD. I sometimes look at my son with his constant flapping hands, little high pitched noises, tip-toe walking, delayed speech etc etc and think something has gone on or caused this and I have no idea what or why. My DS is an absolute joy but I’ve met parents where there is huge challenges and needs (being unable to walk, talk, still in nappies at age 9) and the only explanation they have is simply ‘autism’. For some reason I find a big section of the ASD community push back massively at any kind of research to identity or explain what autism actually is. I don’t understand it.

I agree with you op.

My friend who is a SEN teacher told me that it’s been mentioned but don’t think anything official yet, I was shocked as a medical professional and a mum of a child with SEN it is definitely a disability so I’m not sure how the law will pass, never thought I would say it but I can’t wait until we don’t have a labour government x

One only has to look at the front page of Mumsnet to see the overdiagnosis craze in action.

"AIBU to be a bit upset that DH burnt me at the stake and handed me his mother's severed head on a platter? It made me feel a bit awkward."

"SMH at your lack of awareness OP - have you considered your DH may be neurodivergent?"

A diagnosis of anything is not what gets payment for disability benefits though.

I’m not sure how the law will pass

SEND teacher here as well and I have heard nothing at all about this. It seems unlikely.

Part of the criteria for ADHD is that the behaviour should be seen in more than one setting. But parents post on here about help with diagnosis because their child only shows the "symptoms" at home. They are ALWAYS told their child is masking and get advice about how to get a diagnosis.

That was just one example why, could be another reason - to understand it we should know a lot of info about your area and your school.

Not much help to you now, I know but this would have amounted to discrimination under the Equality Act 2010. As long as the demonstrated effects of the condition or disability meet the definition of disability under the Act, no formal diagnosis is required to access reasonable adjustment or accommodation.

Yes, I have had a diagnosis. I was diagnosed several years ago with ADHD in my 40s, before it was so widespread, and have had a very similar experience to you. I also have four children with ND diagnoses, so I have very much walked the walk.

My issue is that the diagnosis is only one element. Yes, it definitely can open some doors, and yes of course it is a positive that you have that self-knowledge. But those doors don’t open easily or very far. For some it literally just ends with diagnosis. There are very few services to support people struggling with ND. Our CAMHS acknowledges that its therapeutic approach is not suitable for children with ASD for example, and nothing else is offered. Our school system simply doesn’t work for many ND kids. I’m three years into a waiting list to access ADHD medication as I made the mistake of moving countries. I’m currently on my knees trying to get education for one my kids who has EBSA and hasn’t set foot in a school for a year. My employer, a huge corporate entity, is very vocal about its support for ND people, but in practice supports very few adaptations to enable them to succeed.

So the diagnosis is often a false dawn, as I said. And I find it heartbreaking to see parents who think that once they have that bit of paper, everything will be OK.

My son masked in school, it’s very normal for autistic children. However there is usually some visible behaviour, in my son’s case it was easily spotted by other parents, by the teachers who managed to complain about said behaviour, which they then completely denied when I asked for help.
Once home his behaviour was extreme. Yes there was advice on how to evidence this, but that took the form of writing diaries and having some video evidence, so footage of the violence, the repetitive behaviour.

I’ve yet to meet a SN parent who hasn’t been accused of pushing for an unnecessary diagnosis to give their child an advantage. At the same time, weirdly enough, I’ve yet to meet a SN parent whose child didn’t have significant needs, which led to them pushing for a diagnosis, to try to get some semblance of help for their child!

I couldn’t have been less obsessed about my health when I went for a routine mammogram last year. Left the hospital thinking ‘well glad that’s over for another couple of years’. Until I got the call back and subsequent diagnosis of invasive breast cancer. Interestingly, events since then have definitely not been boring !! So what are we supposed to do ? Cut back on screening and accept that more people will die from progressive cancers, to avoid picking up on the ones which will never progress ?