‘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

I haven’t once said that things like that never happen.
However IME it’s very normal for schools to be in denial of any needs and to write reports saying so, sometimes whilst asking behaviour support workers in to help with the child. You couldn’t make it up!

That is exactly the kind of school my son needs. He is on the assessment list for ASD and ADHD but his EHCP in the works is unrelated. He doesn't have any behavioural issues and he isn't violent. He's academically behind now due to the amount of time he has been out of school and he'll need to re adjust to the school routine but other than that, the EHCP is due to all of the physical care he will need during a school day such as transfers when he needs the loo.

His school are telling me they are still the school for him, they just need time and the EHCP to come into play. Hopefully they are right.

see this is why I think it needed to be two books. She is conflating two issues.

She’s not. The book is about over diagnosis across the entire healthcare spectrum. The issue is the same regardless of condition.

Just to be pedantic, along side the right glasses, the correct lighting is absolutely needed. I need very bright light to see anything these days yet am wearing the correct prescription. And I dont like bright lights, I get headaches from them.

Meh, she strays into silly territory when she says she's glad no one diagnosed her as autistic because she was timid. No one gets diagnosed for being timid or being 'really into' something, try being very literal, black and white thinking, struggling with transitions, sensory issues, echolalia etc - she's talking absolute nonsense there so to me that just discredits everything else she says.

I don't think that it is.

I may have same / similar dx. You are right, it is a negative to know and it has changed my view of what my retirement means (no retiring abroad in case I need expensive meds).

But now I am post dx ‘depression’ (had talking therapy), I absolutely needed to and glad I know. I can make decisions in my future factoring in the uncertainties. I can control my exposure and reduce risk of early death. I am kind to myself now I know and understand why I am fatigued. I have vaccinated.

The only reason dx and knowledge is being questioned is because we don’t have a fit for purpose health system. We can all clap for the NHS but it frequently lets us down. ( how come Germany and France have effective health care? Perhaps because money is spent where it is needed rather than spending trying to PREVENT access).

In terms of ND, my dd was dx after 5 years of MH issues. We waited for CAMHS even though we could afford to pay privately as we didn’t want her dx to be dismissed because it was a private dx. Yes we missed it at primary but so did every nursery provider and school teacher, because as a non disruptive girl she was easy to ignore. Yet another example of discriminatory bias is in the ‘system’.

The problem is that all the things you describe are very easy to convince yourself you have, and even to actually start doing them (see also: tics in teenage girls, etc). Some of these things may be occasional foibles that you see on a list, then convince yourself are real struggles that you have, then build into your self-identity, then start doing them more often, then talk to a bunch of supportive friends in a support group about, then start documenting, then take to a doctor and describe them using all the right words...

Basically I'm saying literally every other similar condition is highly subject to social contagion. It would be really weird if this were the one thing that wasn't.

That isn't to say that there aren't some people who genuinely suffer seriously - but that not every person with a Diagnosis(TM) is in that category.

When one our our pupils receive their EHCP, we work very closely with the LA and support services to ensure the right support is provided. Schools that fail to provide such provision as detailed in the EHCP are failing in their responsibilities.

Thank you for this

I've known a few women - it does feel like it's more often women - who have had unnecessary treatment for "cancer" which was later thought to be abnormal cells. On a scan that seems to mean anything they don't recognise.

Sadly I think she's undermined herself with some of her other comments but the questions around cancer have been suppressed for a while. If doctors finally speak out about erroneous "treatments" that's a good thing.

remember when they wanted all over 50s to take a polypill? There's a strange dynamic with over eager doctors.

If a non-verbal child had cancer, we'd treat them right though? They can't consent. Would we treat them only if they'd die without treatment? Should we treat if the cancer would kill them in 10 years? Wondering why it's different to treat their autism

Do we have any other examples of conditions where we want accomodations made but at the same time, we don't think the conditions should be treated? Just thinking it would be good to have a parallel so people can understand this point of view better

Deafness. Some deaf people think it’s an asset and defend their perceived right to have deaf DC who they don’t allow medics to investigate a fix.

Schizophrenia, some types of delusion. One type makes the schizophrenic keen to chop off body parts - cos their leg doesn’t feel right, for instance, so it’s got to go. They’re very keen on their perceived rights to be one-legged.

Thing is, patients can refuse treatment but doctors can also refuse to give it, particularly surgery, so this lot don’t get far.

Eh? I don’t see where the idea of only the autistic doing autistic research can make sense. I get that some people don’t think autism is a bad thing, but that’s not connected. Autism doesn’t give you extra human rights - if it did, how could they apply to research?

There cannot possibly have been any social contagion surrounding autism in girls when I was referred to edpsych in 1990.

If you read that comment chain, you will see that we are talking about research. We are discussing experimental treatments being carried out on someone who doesn't have a life-threatening illness. We are talking about drugs or surgeries carried out with the motive to capture research data, not to help the person. When we are talking about children, they cannot consent to being research subjects.

When experimental treatment decisions are made about children, it is because the child is at risk of death or irreversible harm without that treatment. The doctors may ask for permission to collect research data during that treatment, but the reason for that treatment is to save that child's life. It is never acceptable to give children medical treatments just for the purposes of research.

Autism doesn't kill and it doesn't maim, so the desire to treat it doesn't override the ethical barriers to giving experimental drugs to children. They've got to be tested on adults first before they can be considered for children.

There was a guy in 1930s and 40s Austria who liked experimenting on autistic kids. His name was Hans Asperger. We reviewed what he did that and from that figured out that experimenting on autistic children, or indeed any children, is a very bad idea.

@selffellatingouroborosofhate

There was a guy in 1930s and 40s Austria who liked experimenting on autistic kids. His name was Hans Asperger. We reviewed what he did that and from that figured out that experimenting on autistic children, or indeed any children, is a very bad idea.

That statement isn't actually accurate. He saved thousands of kids(boys) from being sent to camps as they were very bright. He set up schools for them and worked with them to learn more about the way their minds worked. But he was involved with the nazis so that's why his name has been blackened. Fair enough.

However the way you have said it makes it sound like he tortured people.

This is absolute rubbish. You just fill out a form. We have one for a physical disability and it took about 10 mins and no one else is involved. You do need to be able to write articulately and it's a system that massively favours highly educated middle class parents.

also similar about diagnosing children being hard now - in parts of London, private ed psych are passed around who will diagnose children, it's just a question of how much you can pay. SenCo's are then bypassed as they need to implement what it's recommended even if they don't agree with it and EHCPs are given by councils who cannot afford the appeals by v expensive specialist barristers. It's absolutely a system that favours money and those that most need help don't get it because they can't access the system. I suspect the author also lives in London or SE and sees this rate of over diagnosis by pushy parents. The sentence about people who want to help finding people who want a diagnosis rang true. Kids are faving a crisis due to lack of time with parents, school stress, screens and these over-diagnoses aren't helpful.

She’s brave writing that but I agree with what she’s saying. Of course people are going to take it personally and get very defensive but I think she has made some perfectly valid points.

I see this a lot on here, this blanket 'the school are not meeting their legal duties'

But if there is no member of staff, if you cant spread your TA's out because you only get 8k for them and that has to meet a number of children's needs so its not really 1-1, what on earth do schools do?

The resources just arent there, the expectations (which have also been written into law) are unreasonable. Im no fan of schools I think the school system needs a complete overhaul, most of the 'adjustments' people are citing above for ND students are actually just child centred/person centred methods which should apply to all children, however thats for another day, but despite my view about schools you cant get blood out of a stone, if the resources are not there, they cannot be delivered. EHCP or no EHCP

@soupyspoon agree completely. It’s all very well saying the schools are ‘failing in their legal responsibilities’ like it’s some kind of moral failing or lack of will, but the reality is the legal rights for children were conferred at a time when they anticipated under 100,000 kids to actually need it. We are now in a place where half a million children have EHCPs and this is rising every day. This rise was never anticipated when the law was created and as such, it now massively over promises and cannot deliver. Not the schools fault at all.

@soupyspoon 100%

I actually think this is the case all over the British state

Very generous paper commitments that are set out as legal/statutory requirements

Not enough funding to actually commit to those things in practice, for more than a small minority of people

Complicated hoops to therefore select who is able to access it to keep it to a manageable amount

An ecosystem of support networks, private funding, assistants, civil service administrators etc built around those hoops

A worse system for everyone who does not want to or can't jump through those hoops

Autism does exist. But are you saying that there is absolutely not a problem of over-diagnosing health issues including autism? Because that’s the point that’s arguable. There are vastly more kids (and adults) with diagnoses now than ever before- if each and every one of them is in need of a diagnosis and adjustments, is it not reasonable to ask (a) what is neurotypical and where does it become neurodivergence? and (b) why are there so many more people now who either have more difficulty with the world than people in previous generations did, or have more severe levels of need?

Those are questions that should be looked at simply so that we can (dream of) have a mainstream system that actually works for the maximum number of children and a specialist provision system that those who need it can access without the current years of trauma and struggle.

He sent kids to Am Spiegelgrund knowing that they would be killed there.

Exactly this! This is why reform is needed because the current rules aren't working for anyone.

They are completely unaffordable from a financial perspective. They are unsustainable from a resourcing perspective. They encourage parents to think they have an entitlement to a level of help and support that realistically can't be resourced or funded. This leaves them feeling bitter and angry when they can't access what they feel they are entitled to and encourages resentment to fester between them and the school.

We need a much more honest conversation as a society about how we approach SEN education going forward. We need to manage expectations and make sure what we do commit to as a country is actually delivered instead of promising the moon on a stick and then failing to deliver much at all.