‘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

Well, yes, I wouldn't expect to learn English history in a Thai school, or even a Scottish school.

Focussing on your own country's history isn't counterfactual though.

Thank you so much. It feels like having a positive experience of being diagnosed is the only acceptable emotion, and being in the opposite situation is so lonely.

Being diagnosed myself has given me a more crictical and negative view of diagnosis than most people seem to have, and I welcome criticism and challenging viewpoints as long as it don't turn to "It's all made up!" or accused diagnosed people in general as being "fakers".

you have attributed several turning points in your life as being caused by diagnosis, but as I read them, they're all things that are perfectly accessible for anyone: buying sunglasses, ordering groceries online, etc.

Sigh.

1. When people tell you to stop being weird your whole life and punish you, whether through bullying you, publically shaming you, or withdrawing things you like, you prioritise fitting in over your own comfort as a matter of survival and personal safety. My parents told me not to do things that would make me stand out because bullies would single me out, not that trying to follow their advice actually worked. We now rightly call that "victim-blaming" but back then it was normal to blame the victim instead of the bully. Even now I'm an adult, they still do this: when I had vertigo, I kept staggering at work and fell over a few times because I couldn't balance and I told my mother that I wanted to buy a folding walking stick so that I'd have a third point of contact with the ground. She told me not to in case my colleagues bullied me. Literally, she regarded me acting "normal" as more important than me being able to walk safely. When you have been brought up like that, you aren't going to do weird-seeming things like wearing sunglasses indoors unless you have a rock-solid justification for them because you have been taught to fear the consequences. My family do respect medical diagnoses so "actually, I'm diagnosed as autistic" is a useful shield to use against family and any other ratbastard who wants to single me out for daring to prioritise making my own life livable over conforming. Not everyone has the privilege of a family who will support their childhood needs without some kind of diagnosed condition to justify those needs.
2. My diagnosis also unlocked formal, funded workplace support, which I'm pretty sure I mentioned on this thread.

On a different note, reading the pp who talked about the ethics of studying the causes of autism- I get that, but at the same time, I also wonder if knowing a cause might help? I’m not aware that autism can be ‘seen’ in scans etc, unlike ADHD, which presents with a thinner prefrontal cortex, but if there is a structural or causal association wouldn’t that have potential value for treating/making appropriate adjustments without children having to go through the exhausting (and often, yes, traumatising) processes within the health and education systems?

That was me.

I see what you’re saying, and I think there’s an important distinction to be made. Understanding the neurological or genetic underpinnings of autism could absolutely help in terms of making appropriate adjustments and reducing the need for children to go through exhausting and often traumatic diagnostic processes. If, for example, autism could be identified earlier and more accurately without relying on subjective assessments it could mean earlier access to support, which would be hugely beneficial.

The concern many in the autistic community have, though, is about how that knowledge is used. Historically, research into the causes of autism has often been framed around prevention rather than support. That’s why there’s so much pushback, it’s not necessarily about resisting scientific understanding, but about ensuring that understanding isn’t weaponised against autistic people.

I also think we need to be careful with the idea of treatment. If we’re talking about treating co-occurring conditions like anxiety, sensory processing issues, or executive functioning struggles, then yes, research could absolutely improve targeted interventions. But if “treatment” starts to mean erasing autism itself rather than accommodating autistic people, that’s where it becomes a serious ethical concern.

So I’d say the value in this kind of research depends entirely on intention and application. If it leads to better understanding and support, that’s great. If it leads to increased stigma, eugenics, or a push to “cure” rather than accommodate, that’s where it becomes deeply problematic.

Many of the trials stated that they had the right to pass on data collected to third parties who weren't at liberty to disclose their intentions with that data.

So you could sign up and consent to something in good faith that it was with the aim to improve the lives of autistic people, but once the data collected had been passed on, it might not be used in a way that is quite so altruistic.

It would be fantastic if research was run by autistic people, for autistic people, and data was not passed on to third parties, but then there's still the issue of informed and enthusiastic consent.

You can't start stripping away people's right to consent in one area without it then creating loopholes for other groups of people to start having their rights to consent removed too. It also means that should someone consent on someone else's behalf, can consent be withdrawn by the individual in the clinical research trials if their guardian doesn't wish them to.

The problem is that then, there are autistic people like myself who can enthusiastically consent, but it's not creating a large or varied group of autistic people in which to collect data from and it will be bias and skewed.

There is a lot to consider and I think research can be done ethically, but everything needs to be done in a proper manner and nobody should have their rights revoked as a cost saving measure.

Apologies - I think we were at cross purposes here. I though you meant that ACEs don't impact behaviour, whilst I was attempting to make the point that whilst once upon a time it was assumed that ADHD was caused solely by ACEs, we now know different.

If a child/adult can mask at school or work but melts down at home isn’t that a compromise than just not being able to go to school or work at all?

Try being the elder sister of an undiagnosed ADHD child who sometimes turns violent as part of a meltdown at the end of a school day. And being left in charge of that child for over an hour until the parent gets home. She once broke my bedroom door lock out of its frame trying to get to me. I have a scar on my face from her hitting me with a blunt instrument. An inch higher, she'd have ruptured my eyeball. She's lovely now that she's medicated.

Or you could have dimmable classroom lights, tolerate a child moving in their seat as long as they are quiet and sit at a desk next to a wall so that they aren't in other pupils' field of vision, allow girls to wear trousers instead of forcing them to wear skirts and itchy torture tights, allow children a choice of uniform options, e.g. shirts and polo shirts, allow kids to spend breaks in a quiet softly-lit room...

With over 200 peer-on-peer boy-on-peer-who-is-usually-a-girl rapes reported to the police per year in English and Welsh schools, "traumatised" is entirely appropriate for some school leavers.

Or you could have dimmable classroom lights,

And the visually impaired or short sighted students?

Rape was never mentioned. Let’s not change the goalposts after the event.

That poster said: Too many young people are traumatised by the one size fits none system that education currently is that they are too ill to seek work.

Sexual assault in schools is absolutely a consequence of the one-size-fits-none education system because vulnerable SEND children have been mainstreamed without the staffing and support to keep them safe.

I agree completely and this is a great post. People act like their requests are very small and easily accommodated. In reality they create a lot more work for teachers, result in competing needs and create a complex web of conditions that are basically unsustainable.

Schools are buckling under the weight of SEN support but we have no choice as special school places cost even more. My oldest’s school asks parents for basic items like cutlery as such a large % of their budget goes on the one-to-ones. 25 children share 1 teacher while 3 children have their own dedicated member of staff. The non SEN kids are falling behind because there is no TA to help the teacher. We cannot spend any more on SEN. Labour know this and have said as much.

Without the support? They all have one to ones at my kids’ primary. Most of the budget is dedicated to this, we have to donate basic things to the school as all the money goes on this.

Task lighting exists. I have a rechargeable task light that clips to my desk and cost around £12 from LIDL.

Short-sightedness is not alleviated by extra lighting but by moving closer to the object being looked at. The definitive solution is corrective spectacles and I question why any short-sighted child isn't given appropriate glasses.

Children could also be permitted to wear sunglasses indoors, perhaps with restrictions on brand names to prevent them from becoming a "oneupmanship" tool.

That's just your kids primary.

My son is currently out of school because they don't have the staff to support him at his primary but he also doesn't qualify for a special school either.

Just wait until your kids get to secondary. It's a shame that @crumblingschools isn't on this thread.

“Schools are buckling under the weight of SEN support”

But you’re ignoring the fact that schools have slowly taken on rigid practices over the last few years and taken on more and more targets that makes more children not cope, that is likely resulting in the larger numbers of SN that they’re subsequently buckling under.

But you’re still resistant to any adaptations, even when either free or low cost, that might well mitigate this society-made problem? You’re showing your true colours here.

I’m all for adaptations which suit all children. But I’m not for dimming lights leaving kids unable to see, ‘silent’ classrooms which forbid children from excitable chatter, isolating children at solo desks who work well with likeminded children at a table, or the removal of tests if they serve a useful purpose in streaming and catching kids who are struggling. It has to be for the good of the many, if that’s an ND friendly change then even better.

😣 I’m dreading it.

Not for me it doesn’t. My eye condition is centred around light not being refracted properly. Dimmed lights would be a nightmare. Why should children have to squint so 1 or 2 feel more comfortable? Sorry but these suggestions are madness. Who would pay for and PAT test the lights? Everyone would want one to mess around with. Sunglasses in class?

Following! Such an interesting topic. Thank you for sharing this OP will read later!

@Wildflowers99 Who has asked for silent classrooms?
Calm and focused is what I said. Which is a long way from the chaos that some schools allow, and in primary school sometimes encourages! Excited chatter throughout lessons is not conducive for anyone to learn.

Having a range of seating arrangements would mean there’s something to suit everyone. More children’s needs met.

SATs do not benefit children at all. Secondaries do their own unpressured tests in September for new yr 7s.
My problem with SATs is the year long immense and increasing pressure on 10/11 year olds, that has already been identified to trigger mental health problems. Scrap them or stop schools from cramming the children for months and months.

Dimmable or dimmer lights would not leave children being unable to see. That’s hyperbolic. We don’t all have bright lighting in our homes, why do we insist on them in school? They could dim by several degrees without causing a problem to anyone whilst relieving overwhelm for several.

Removing most of the laminated crap from the walls and ceilings (wtf?) would not affect anyone. Relevant posters fine, but the whole curriculum up there on the walls? Unnecessary. Would instantly take away a real sensory overload.

As someone else said before, choice of uniforms so those with sensory issues can choose something suitable whilst still obeying uniform rules. Not going to hurt anyone.

Quiet place for break times with a strict rule of quiet, also not hurting anyone.

At the moment the way schools are being run are for the good of no one. We’re all humans, yet schools in the uk are haemorrhaging teachers from the system, have rising numbers of SN, have more children school refusing and more children being removed. It’s hurting everyone.

The way you’re talking it’s like we’re trying to disrupt a perfectly good system. The system is broken, and the ever increasing numbers of children not coping is a symptom of that, not the cause.

If the 99 in your username is the year you were born it explains a lot, because you’ve never seen what education was before. Some of us are old enough to see how inflexible and flawed things are now compared to how they were, and for many of us it’s very clear that these changes are disabling for many people, even ones who would have thrived or just got by in the 80s with no need for a diagnosis.

The bespoke school utopia for all, or any child, in the state system, just doesn't exist, it never has.

Schools are there to teach, primarily, not to solve all the student's social, emotional and health problems, they just can't.

It is our job as parents to make sure our children are capable of attending the educational setting the we choose to send them to.

If your child's school cannot, and never will, meet your child's individual needs, look at other schools, beg, borrow money to pay for private and pay it back over years (like a mortgage) or home school online. Not all schools are rigid, but they all do have many other pupils who also need an education in them.

We can all argue all we like but if isn't the funds or trained staff available then the adaptations are just not there.

If the adaptations you think would be suitable, free and easy, for your child's school then get it done in your child's school. Talk to the Head, Governors, other parents. These changes don't have to be across the whole country if they are free and easy they could just be done on a school by school basis. There is no point in waiting for the Government to demand changes, that might take years, even a change in Government, and then still years, by this time your child is likely to be out of the school system.

Do you not think Heads and teachers want to make school as productive as possible for as many as possible? If they thought these free and easy solutions were solutions why aren't they implemented? State education is for the many not the few we all have to deal with that. All parents and all children. No one is more special than others.

If you don't think that some parents use a diagnosis as an excuse to demand that schools do more and they can be excused you are mistaken. And I know it's not all, or even most parents, but some do. And this stretches resources further.

1. I've worked in rooms with different lighting levels in different bits. People chose where to sit.
2. Why should "one or two" children be in physical pain and squinting and covering their eyes because one or two have an eye condition that apparently means that they need the floodlights from Wembley Stadium to work? Most people can tolerate a small reduction in light level and see just fine and my experience at work is that everyone prefers the office lights to be taken down a notch from "full", it's just that I'm the only one who needs that. People are so keen to say that NT people can have sensory issues too when they want to use it as a "you're not so special" stick to beat autistic people with, but quietly forget that if it means that they can falsely paint autistic adjustments as a problem when in fact NT people often prefer the adjustment too.
3. The lamps are rechargeable, the kids who need one carry it around, and they get recharged at lunch and end of school day. Appliance testing of the charger is <checks the Code Of Practice for electrical appliance testing> annual at most for a class two appliance in an office environment used by adults and would be formal visual, not electrical. The lamp itself gets a visual user inspection at the end of each day. It would be rare kids who need them because, contrary to what you appear to think, dimming the lights enough for an autistic child to no longer be in pain doesn't require the room to be plunged into darkness. The reduction in light is very modest.
4. Why not sunglasses in class? That's the option that has the least impact on others, yet you still object. It's clear that you don't actually care about not disrupting others, you just want autistic people to pretend to be "normal", no matter the cost to them. Attitudes like yours are why autistic people are scared to use the adjustments that we need for fear of judgement, bullying, and discrimination.

Why should "one or two" children be in physical pain and squinting and covering their eyes because one or two have an eye condition that apparently means that they need the floodlights from Wembley Stadium to work

Good grief.

Low lights are a nightmare for anyone with hearing difficulties. When your hearing gradually deteriorates, you end up relying on clearly seeing the persons mouth to follow what is being said.