‘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

Do you not think that ACEs just might influence behaviour?

The teaching of history in schools is very biased as to the country where it’s being taught.

Schools are buckling under increase in demand. There is limited money and limited people who are trained to support SEN students in a main stream setting.

As in life we all have to work with what we can afford or is provided.

Our teen’s two comp secondary schools provide so much more than our schools in 80s/90s. They have a full time nurse trained in mental health, a SEN division, quiet rooms, in-person and anonymous mental health/any problems actually, contact options. It’s decent. But for some it’s not enough, so what exactly can they do? No money or unable to recruit more staff, then you need to decide as a child and parent if you are able to remain in school.

We get a letter in year 8, if you think the academic model isn’t suited you can move to a more technical college in year 9.

I asked our teens if they thought ASD/ADHD was over diagnosed with their peers, they both said definitely.

How can relaxed attendance help? The student will return having missed some areas, are parents expecting the teacher to redo endless lessons for one child? Or what if it’s different children each lesson?

An in a workplace how can you plan if staff are not consistent? If people decide they “can’t face” the phones, or work in a busy office, what if that is just what the job is?

Making possible adjustments, giving possible support is one thing, but if what an individual needs just isn’t possible in that setting, it isn’t possible. Having a diagnosis, and for some an expectation, that cannot be met is more detrimental than them finding ways to cope, navigate, mask even.

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?

We tell our kids “out there” you are not special you are a bang average human in amongst hundreds of others, but to us you are life itself. They need to hear this to function.

Almist everyone has problems, many people have to just cope, muddle by, and sometimes a diagnosis hinders rather than helps. Sometimes it only changes expectations rather than actuality. And that is worse for everyone.

For many a calmer, quieter, less cluttered classroom would be a vast improvement.

Things like having a timetable up so there’s predictable structure. Prior warning to timetable changes, or for things like school trips, non uniform days, anything out of the ordinary. Obviously not always possible, but announcing an enrichment week the Friday before is not helpful.

If a child is known to be anxious a little more leniency towards attendance, particularly in secondary where this seems to ramp up.

If school refusal is an issue a dialling down of threats would be helpful, and perhaps allowing the child to still have access to schoolwork with no pressure to be in school (the constant pressure means the child is less likely to be able to attend).

Bullying needs to be watched for, particularly from NT children, who know how to wind up a ND child without the teacher seeing, which often leads to escalating behaviour.

Those above are all basically free which would help improve the experience for lots of ND children straight away, but are also things that frustratingly we are told are impossible - but maybe only because things like an overstimulating environment ticks OFSTED boxes so their hands are tied? There’s no excuse to not have a timetable up and some structure, or to give plenty of warning for changes where possible.

Cuts to funding have taken away a lot of school’s ability to have a quiet place for children to go. Some still have them and they work well, but obviously they have to be manned.

More coherency between teaching staff and SENCO (this seems to be more of an issue in secondary, where the SEN teams understand what the children need and are very capable of doing this, but very often, and understandably, teachers just want to teach, the rise in SN and lack of support prevents that. It’s a vicious circle in some schools (have heard this from many who work in SEN teams who say this is a problem for the children in their care).

Cuts to funding and special school places also mean there are children with more severe needs in mainstream - this is bad for them and bad for others in their care room, particularly those who are ND but would cope with less noise and distractions.

Less aggression and/or gaslighting towards parents of SN children (please don’t come at me and tell me this doesn’t happen. If you have a ND child you have likely experienced this, if not you’ll be blissfully unaware, and I fully understand that teachers think they’re doing the right thing by trying to sort out these feckless parents, but honestly, it just makes the whole situation more difficult which will affect our children).

It appears that policies have changed over the years taking away the ability to remove bullies or violent children from the room, maybe lack of staff affects this. No violence should be tolerated at all, and no parent is asking that their child be allowed to be violent. We may not want our child to be punished for losing it in the classroom - tbh it would be pointless to, as a violent child is in meltdown and by that point has lost control. We do ask that if a school says they can manage our child’s needs, and when there are zero other options, that the child has support so they don’t get to that point. My child was violent at home, very often because one particular teacher’s actions pushed him into meltdown every day.

Understanding that this is a situation the government has put us all into with their policies, cuts, and via agencies such as OFSTED. These actions mean more and more children are not coping, which instead of leading to investigations into the reasons why is just leading to more division, which isn’t helping any of us!

Having written this I’m very aware that posts like this have been written a lot over the last few weeks, but the same posters keep showing up wringing their hands having ignored it all and deciding that all SN parents are looking for a uniquely tailored experience for our precious little darlings. Which is bollocks. We just want them to do better, and they could start with basically free changes that would benefit all children in school, and the teachers too.

“An in a workplace how can you plan if staff are not consistent? If people decide they “can’t face” the phones, or work in a busy office, what if that is just what the job is?”

Do you live in a place where working in an office is the only option for everyone?

People find jobs they enjoy and can manage.

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.

Change the system, allow more flexibility and nuance for those who need it, the knock on effect will see more children thriving and more leaving school being able to work.

Interesting. Our son has recently received an NHS diagnosis of ADHD (with emphasis particularly on attention-deficit rather than hyperactivity). Before going down the NHS route, we did pay for a private assessment for him, and the diagnosis was also that he had ADHD. I haven't heard of anyone who has gone down the private route being told their child doesn't had ADHD, but I do wonder how much that's because you're only likely to spend £2,000+ on a private assessment if there's a very good reason for doing so.

For what it's worth, we felt that the private assessment was a lot more thorough - the NHS diagnosis was mainly made on the basis of our and school's evidence, plus a QB test, whereas the private assessment, in addition to asking us and school to complete far more detailed questionnaires, involved a 3-hour in-person session with an educational psychologist and a psychotherapist, who spoke to us separately and as a family. It wasn't a 25 minute zoom call.

I can't find any fault with the support we have received since diagnosis by the NHS, though - we're having in person appointments every 3 months with a consultant, as well as regular phone calls. DS is now on ADHD medication, hasn't had any negative side effects and we've seen a massive improvement in his focus. His consultant mentioned that the drugs seem to give the best outcomes in children with inattentive-type ADHD.

I think traumatised is an exaggeration. Children in Gaza are being traumatised. We’ve never had more flexibility than we do now - wfh, part time hours, great employment laws around reasonable adjustments and so on. But ultimately we cannot tailor our society around solitary individuals.

“ 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?“

No, because in a child being in meltdown can mean hours of complete chaos.
I can’t describe how others children present, but for my son it meant walking out of the school gate at 3.30 and the meltdown starting, him attacking me, screaming, hurting himself. Once home if I couldn’t contain it (which depended on what had gone on in the day) he would upend the house, he’d beat the shit out of walls, doors, me, and this would often end up carrying on until 1am - does that sound like an acceptable compromise?

Masking isn’t a benign thing, it leads to worse mental health issues and worse outcomes.
It’s not a case of fake it until you make it, or grin and bear it, it is actually very damaging to autistic people and should never be seen as ok.

Of course ACEs might influence behaviour, but being ND may also influence behaviour. But I've been in the position where a head teacher has stated that challenging behaviour is the result of ACEs and had to be reminded that there are other causes of challenging behaviour.

Honestly, that hurts a bit. As the mother of a ND child whose behaviour is sometimes impacted by that ND, the implication that her family background has caused her issues through trauma is quite offensive. My DD genuinely hasn't experienced anything that could be considered traumatic. There's nothing that we could have done differently so that she wasn't ND.

Cuts to funding and special school places also mean there are children with more severe needs in mainstream

There haven’t been any cuts. We currently spend 11 billion on SEN a year, and this goes up and up every year. Plus another 1 billion on transport to special schools.

It appears that policies have changed over the years taking away the ability to remove bullies or violent children from the room, maybe lack of staff affects this

I agree with you completely and I wonder how violent children and the chaos in classrooms has contributed to school refusal among the other kids. I wouldn’t go to work if there was a good chance of me being hit by a colleague.

These children end up traumatised (but way to go with the gaslighting!) because every single day their central nervous system is massively disregulated by being in an environment that caters to the targets of government. Traumatised is no exaggeration at all.

And again, tailoring around solitary individuals - you’re not reading any of these posts are you? You’ve got your own fixed idea of how it is and cannot fathom how things could possibly be different.

We have far less flexibility in terms of how classes are taught, attendance targets, lack of support to students who need a little help. Many teachers are leaving education because they’re stressed to hell and they don’t like how education has become.

A couple of years ago in a Home Ed group I was in, the fastest growing number of people joining were teachers, leaving because they’re stressed didn’t want their own children to be in a mainstream school.

Education is broken, but so many people are fixated on it being fine, if only it wasn’t for those pesky disabled kids 🙄

Special schools were cut by Tony Blair who pushed a mythical idea of inclusion that hasn’t worked.

The SN budget cannot keep up with the mess he made.

More and more children cannot cope, but instead of doing targeted things that would improve the situation for everyone they insist on turning the other way and focusing on increasing targets.

Nobody should face violence, but in the classroom when other options have been removed, no child should be punished for reacting to an unsuitable environment that they shouldn’t be in in the first place.

I read a great article recently that I wish I'd saved, which made the point that in changing education, the government is only measuring one metric, which is higher exam grades. It has ignored the harms - the number of children out of education, and with mental health issues (neither confined to ND children). I've been reading evidence presented to the Education Select Committee about SEND and teachers are making the point that being forced into the rigid expectations for children's learning outcomes from primary onwards means far less flexibility to support other needs. The levels of stress caused to year 6s by SATS for example is horrendous, and then they go from that year straight into the challenges of secondary, with its rigid (and sometimes pointless) rules.

But asking other teenagers to not be teenagers, and expecting schools to be able to prevent all situations where a melt down wouldn't happen is just impossible.

Our teens, throughout their entire education, have had lessons disrupted, violence towards them, seen violence, rudeness, chairs thrown at teachers, telling teachers to fuck off and felt powerless. They shouldn't have to put up with all this either. And our teens are decent, they embrace individuals, are kind and understanding, as much as teens can be, are not bullies and don't make fun of children who struggle, in fact they are some of the few who help others in class and during breaks.

So if it means that the melt downs happen at home with the parents or in a classroom with other children then it should be at home.

Other children's ADHD/ASD should never be our children's problem, if it becomes a problem. Obviously everyone wants an understanding education environment for all. State provision is just that.

And we are not arseholes, we as parents, guide our children through days when they have had to witness student classroom melt downs or violence, we say to try and understand that others find situations difficult and for it not to affect them and to show some empathy. And yes after many incidents the students usually get removed because it's unsustainable in class.

So as much as we try and instill empathy and understanding in our kids, do many parents do the same? If we all try to take into some small consideration each other then the world would be a better places, parents of bullies don't tend to care and parents of SEND kids need to understand this as well. Ourselves, our children, everyone who has or wants to be in a social setting, school, work, public transport, leisure, eating out, everywhere there are other people, we all have to adapt and consider our actions and effects they might have on others, and many don't I get that. But that is life, outside life.

And school has been hard for our eldest, fucking hard sometimes, especially dealing with other kids, some ASD some not, it's almost over now, and we have worked with him to make sure he got through as best he could, without making any other student's life harder. And we don't see that from some other parents. There is a lot of demanding of what they are entitled to but not quite so much on what other students are entitled to not put up with.

If you child needs smaller, quieter classrooms you need a private school that can provide those facilities. I know not everyone has the money, just like not everyone has the month for private medical insurance, or business class flights, or a fancy car, or a big house, if you depend on state provision you work with that provision you cannot expect that provision to be bespoke for individuals.

This is why sometimes a diagnosis can be detrimental for all. It can split the limited resources amongst more students, some of whom could get by, and many kids "get by" without, meaning those with more complex needs would get more support.

Some children should not be in mainstream.

Other’s can cope with some little adjustments.

I don’t think it’s off the wall to suggest that during lessons there’s an expectation for things to be calm and focused. I also don’t think it’s unreasonable to suggest that schools should have a predictable structure, and warning of changes hardly creates a negative experience for NT children.

Most schools provide a quiet room for ND pupils to use during break times, but then don’t enforce it being quiet, and let others in who don’t need it. That’s not putting other teenagers out at all, that’s having a space with a purpose that should have boundaries.

It’s unsustainable to have more severely affected children in mainstream school, but at the moment parents are fighting for the very limited options - it’s not their fault that your poor children are suffering, and their children are also massively suffering as well.

It shouldn’t matter if parents of bullies aren’t engaged, schools should have a clear and effective policy, and most of the time at the moment it’s ineffective. So change it. Why are we putting up with this?

More children are struggling because of many little things that could easily be stopped or changed that would make everyone’s experience better, not just the SN child.

Honestly at this point I think there are loads of people who don’t have any empathy, and want the frankly shit status quo because they don’t want to “pander” to those with SN, which at the end of the day is hurting your children, you, and the teachers.

There’s been a real anti-SN swing on MN in the last few months. It’s all very well, but any one of us is only one accident or illness away from disability at any one time. Bear that in mind when you decide that schools should stay as they are, even though they are now damaging more and more children.

I agree.

My son was perfectly healthy for 8 years until he had an illness which is why he's now disabled. I had to quit my job to care for him and school are dragging their heels in taking him back despite the fact he isn't disabled enough for special school and has already missed so much school.

So now we're stuck in this battle with school because where else is he supposed to go? He needs an education.

"it’s not their fault that your poor children are suffering, and their children are also massively suffering as well."

This is the attitude I was talking about, our "poor" children don't "suffer" because we make sure they don't. I am not saying it's easy because it isn't, and whilst we are making sure they aren't "suffering" we also make damn sure they don't make other student's lives miserable as well.

But yes after 10 years in the education, explaining empathy and behaviour and filling in missed lessons because of disruption, and attitudes like "we don't care if your poor children are suffering" you do run out of steam.

So when the disrupted kids gets expelled in year 9 and there is a possibility that they might be in a position to sit an Eng Lit GCSE (because the majority of students can analyse texts even if they are a bit outdated nowadays) it would be a lie to say there isn't relief there that "X student has gone".

And I don't like feeling like that about other child, they are a child just like ours after all, but actually seeing your point of view that indicates you have not one ounce of concern for other students does make feeling relief a little easier. Perhaps a bit more selfishness would have helped our children earlier in their school life but that wasn't who we or what we want our children to grow into.

I agree with this (I know my posts in this thread make me seem like an ogre who hates "woke SEN nonsense" or something).

Office jobs aren't for everybody, huge classes of 30 kids aren't for everybody, academic classroom education to year 13 isn't for everybody. We all have our own paths. I had a much better experience of post-secondary education when I went back for a practical master's than my first attempt at undergrad.

I really resist calling all these people "ill" and making them think they are defective - putting them/us into a victim/sufferer mindset instead of a practical, internal-locus-of-control, life is a choose your own adventure game and you get to write it to the extent possible. This could be fixed through a combination of better messaging about options, but also more options per se - particularly in the school system there are few options to escape without either £££ or a SEN diagnosis.

(As always, talking about the "diagnosed in adulthood" kind of profile not the "nonverbal 6yo violent meltdown" profile)

In reality though those diagnosed in adulthood have either got to that point to explain their support needs or their mental health, or they are like me, the parents of ND children for whom the penny dropped when going through assessments for our children.

My type will never get any support, we tend not to need it. What we do get though is being able to understand our life long difficulties that have marked us out as lazy/useless/incompetent/rude/stupid/insert insult of choice!
We can turn ourselves around and tend to be more productive, more in control of our mental health. So that seems like a good thing and therefore important to be able to access.

Talk for yourself. I was diagnosed after dd noticed the issues in herself and putting her symptoms into google

My life was a mess

My life was a mess too!
Since diagnosis it’s been a revelation to be able to pick apart my past and have the opportunity to find ways to manage my life better.
I was a mess but couldn’t ask for help, didn’t have any way to say what was going on. Understanding why gave me the chance to work it out.

@Yalta of course, if a diagnosis means a pill is given that gets someone out of the metaphorical wheelchair then OF COURSE this is a good thing. DH takes ADHD meds, and they absolutely are NOT a panacea, but things are much easier when he takes them than when he doesn't.

BUT, my DCs have various other diagnoses where there is no 'pill'. There's nothing, really, other than an identity that in one case I think is helpful, and in the other case really really doesn't seem to be - it seems to be harmful.

Suzanne O Sullivan has written at length about some of the mind-body diseases that remain appallingly misunderstood, and I think she's coming at this from the perspective of someone who delivers profoundly unwelcome and difficult diagnoses.

For many reasons, I'm really concerned about the ways in which it seems to me that distress is pathologised and labelled - and then often just discarded. A diagnosis that gives a label, with no medication/ treatment/ therapy/ understanding - this is appalling to live with.

ADHD meds are a remedy. They are a tool to silence our brains to one thought at a time

No support from anywhere apart from my monthly prescription

The ADHD meds could have worked better if I had taken them prior to going through menopause.

How would I know what sort of child I would have been with meds. That’s the horrible reality. Where would I be now if I had been diagnosed and had the meds to focus me and was free to choose what I wanted without people reminding me how stupid I was, or how lazy I was

Looking back I knew at the time my choices weren’t what I wanted.

It isn’t only ND that can be diagnosed in adulthood, having caused lifelong problems and issues. Developmental trauma, complex PTSD, some personality disorders can all be masked or managed in public but behind the scenes cause a huge amount of distress and problems like substance abuse. Reading some comments on this thread makes it seem as if there are posters arguing that only ND people suffer from disabling mental health problems- I’m sure that was nobody’s intention, but that’s how it came across.

Returning to the OP and overdiagnosis, I still think that a lot of self-diagnosing people use these labels as excuses, and because so much of this is done because of things on social media it does seem as if there are people who want to get on a bandwagon, either for themselves or their kids. I have (as a teacher) experienced parents whose attitude really is enabling a sort of learned incompetence in their kids, and across the board I have met people who use the terms ‘anxiety’, ‘depression’, ‘trauma’ to excuse all kinds of behaviours. That is not to say it’s all parents or all diagnoses, but I do think there is a discussion to be had about overusing and misusing these terms, which have specific meanings and connotations.

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?

I object to the phrase aspie supremecy but it is a term widely used to acknowledge the privilege that lower support needs individuals have in advocacy compared to our high support needs individuals and therefore as someone who has lower support needs than someone who is non-verbal with lifelong developmental delays, I would want to protect them from treatments and testing in which they can not consent.

If there's to be research into the causes of autism, it should be on consenting autistic adults with lower support needs, i.e. people like me, and even then with strict ethical guardrails in place because people like me can still be vulnerable to coercion.

It's not OK to use non-verbal and pre-verbal kids for this.