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More SEN, better diagnosis, lack of funding or a combination?

181 replies

genuinequestion235 · 07/01/2024 13:00

Genuine question:

I read a lot of threads on here relating to poor provisions and support for children with SEN. When I was a child I don't remember many children with SEN (3 spring to mind in my school of 200!)

So do people think more children have SEN needs? Or are we simply better at diagnosing?

OP posts:
SpudleyLass · 07/01/2024 21:48

Naptrappedmummy · 07/01/2024 21:41

Um excuse me, I do NOT want to say that because it is NOT what I think. Why are you assuming I do?

Who knows what the cause is - environmental, perinatal, de novo mutations which are suddenly much more common. But what I do know is that this specific profile is much much much more common than it used to be, and therefore there must be something behind it. And I’ve never once said it is due to parenting (because there have always been crap parents, so that disproves that one).

Then you're ignoring the obvious.

Children like my daughter are not "exponentially more common" - it's just that we're in now a country which is slashing all specialist provision so more are seen in mainstream.

Oh and people love to blame the parents.

Less support is given so needs increase and for longer.

Its not a conspiracy. Social media exposure, no support, better diagnostics, more ND coupling all have their parts to play.
ThThese children have always existed. It's absurd to think otherwise.

Alsen · 07/01/2024 21:46

The right to an education if you had learning difficulties only came about in the 1970’s. Before this you could be deemed ‘ineducable’ and therefore denied a place at school. It was only in the early 1980’s that children with SEN had the right to a mainstream education. When I started teaching I taught adults with learning disabilities who had been released from the long stay institutions. Many had been placed at 5 and were now in their 40’s or older. Some of the staff from the institutions had been transferred to the day centre where I was teaching. They recalled that the children would be placed in a room with no toys or any activities, apart from a TV in a box, high on the wall. They would be left there all day. Those who we would say had profound and multiple disabilities were called ‘the babies’. They were wheeled out to a covered balcony and left there most of the day. If you can bear it there is a documentary on YouTube, made by ITV called ‘the silent minority’ I think it was made in 1981. It’s a very hard watch but it tells you where the children we now see in school were. One of my students who was kept at home by their parents rather than placed, remembered being called out by the headteacher in primary school, and being told he could not come to school anymore, he was in his 50’s when he told me, and still very upset by the memory. This was because he had a learning disability. I think it’s really important to remember what we (who may be lucky enough not to have cognitive difficulties) did to those who did, and why we did not see them when we were at school.

Naptrappedmummy · 07/01/2024 21:41

SpudleyLass · 07/01/2024 21:37

You're right it is pointless - just say what you want to say. That we're feckless parents and there cannot possibly be an organic reason for non verbal children who, apparently aren't either Downs Syndrome or have CP, to exist without poor parenting being to blame.

I mean you ARE the same poster who struggled to see the ableism in the now infamous "expensive holding pen" thread, are you not?

If its not organic, what do you think is causing the "sudden uptick" in non verbal/speaking children, that has nothing to do with the factors others have already put to you?

Personally, I find it hard to believe that your Gran never met a non verbal autistic child in her illustrious career.

Um excuse me, I do NOT want to say that because it is NOT what I think. Why are you assuming I do?

Who knows what the cause is - environmental, perinatal, de novo mutations which are suddenly much more common. But what I do know is that this specific profile is much much much more common than it used to be, and therefore there must be something behind it. And I’ve never once said it is due to parenting (because there have always been crap parents, so that disproves that one).

EliflurtleAndTheInfiniteMadness · 07/01/2024 21:41

Societal change and better diagnosis and recognition. Life is very fast and over stimulating. Sensory and information overload. It’s difficult to find peace and space to just be This is so true.
These kids weren't just the quite kid in the back, they were also the disruptive kid and and the one that couldn't learn and the class clown and the kid that went home and melted down because they masked in public.

I cant speak for other SEN, but with NDs like ADHD and Autism a lot of it is better diagnoses. Women especially due to masking flew under the radar and still do, but to a lesser extent.

I know a lot of people whose kids are ND, mostly Autistic, some with ADHD and some with both. Most of these kids have at least one parent who is ND, the vast majority of these parents don't have and can't afford to get an official diagnosis. My DC are all Autistic. In the previous generation XH and I both have siblings that were Autistic and undiagnosed. I probably have ADHD. So that makes 3 in the last generation who are ND and 3 in the current generation. Officially we have no ND people in my generation and 3 in my DCs generation.

My DC would have all flown under the radar. They're all very smart, do well at school, mask well, not disruptive, not obviously Autistic. Infact my DC are all less noticeably ND then my undiagnosed brother.

SENCoWithADHD · 07/01/2024 21:40

I've been a SENCo for nearly 20 years. We are absolutely better at identifying young people with needs, my own ADHD was missed when I was younger and I have been diagnosis as an adult- so much of my childhood makes much more sense now looking back.

However it's undeniable that the number of pupils with complex needs has increased exponentially. I teach in a 2-form entry school, 5 years ago we had about 2% of our pupils with EHCPs, now it's over 6%. We had 7 pre-verbal children start our nursery this year, I have a further 9 pre-verbal children in reception and a few more in KS1. All would have been in specialist provision 5 years ago, now there are no spaces so they have to stay in mainstream. In the past our pre-verbal children would have moved over to specialist provision as soon as their EHCPs came in.

VikingLady · 07/01/2024 21:39

When I think back to my last year of primary school, we had one kid in the whole school diagnosed with dyslexia, plus one with complex delays.

In hindsight, in my class of 30 there were at least three classic ASD including me, possibly two more, one unbelievably obvious ADHD, and probably a global developmental delay.

I know that teacher was given the tough kids at both ends of the spectrum, but there were only seven classes in the whole junior school so that's a pretty high proportion.

(And yes, I am an expert, but it is a guess based on memory).

Baileyscream · 07/01/2024 21:38

'Genetics' as a reason also includes those who have genetic mutation but one which hasn't been passed on from the parents. This is what is strongly suspected in my ds' case. I wonder if it was to do with pregnancy. I was incredibly ill, admitted to hospital and put on a drip then told to have bed rest when discharged. At the same time I was put under enormous stress by family members. He was born by c section.

He has severe autism and while I understand that with some people the impact of today's lifestyle; sensory, communication, regulation etc plays a part, it doesn't with him. He would have been non/ pre verbal at entry to primary school regardless (he'd had slt znd ot input from 3 and dx at 2). I also don't agree that everything to do with his severity is linked to ld and not his autism. I've had this conversation many times with a number of professionals including those we've paid for independently and they've all said he doesn't have ld and he is severely impacted by his autism.

SpudleyLass · 07/01/2024 21:37

Naptrappedmummy · 07/01/2024 21:30

But you can’t ignore children who are non verbal and unable to communicate. I think it’s pointless us continuing this discussion to be honest.

You're right it is pointless - just say what you want to say. That we're feckless parents and there cannot possibly be an organic reason for non verbal children who, apparently aren't either Downs Syndrome or have CP, to exist without poor parenting being to blame.

I mean you ARE the same poster who struggled to see the ableism in the now infamous "expensive holding pen" thread, are you not?

If its not organic, what do you think is causing the "sudden uptick" in non verbal/speaking children, that has nothing to do with the factors others have already put to you?

Personally, I find it hard to believe that your Gran never met a non verbal autistic child in her illustrious career.

YomAsalYomBasal · 07/01/2024 21:36

A mixture of many factors.

My own child would not have survived birth if she had been born a generation earlier - thanks to medical science. And even then, tube feeding and home ventilation are relatively new. If she had survived birth she would have lived out her days in a hospital.
Advancing maternal age and IVF increase the chances of disability. As does having multiples, more common these days.
A very narrow school curriculum which means anyone neurodivergent will struggle more than in previous times.
Plus better diagnosis and acceptance.

UsingChangeofName · 07/01/2024 21:35

Radpb3rryDel1ght · 07/01/2024 20:53

UsingChangeofName

Do you have data for that because I’m not seeing

”huge numbers of children with really significant and complex needs. None of whom would 'sneak under the radar' or 'not be noticed'. We are talking about children starting school without the ability to make their needs known. No expressive language. No receptive language. With significant sensory needs that impact upon their behaviours. With complex dietary requirements. That bite or hit out. That head bang. That have no recognition of having soiled their nappy. That have no understanding of instructions or the concept 'it is time for us all to...... now'. That sometimes just squeal or scream for a large part of the day.
In some schools 3 or 4 starting school like that”

Where are you getting figures and data for that?

Work on a daily basis.
Plus data going back since we started keeping all data on the computer rather than on paper (12 years or so?)

jollywhite · 07/01/2024 21:34

My son (ADHD/ASD) struggles to cope in today's modern society.

Let's rewind to when I was in school in the 80's. Cane behind the board to basically ensure you sat still and listened, big walk of over 1 mile each way to school and back each day with all of your friends, so plenty of exercise and lots of time to destress , longer playtimes, more playtimes (break morning and afternoon), proper dinner hour, lots of art, lots of music, lots of sports. Actually FUN LEARNING IN SCHOOL - project work, preparing for school plays, learning the recorder.

Honestly. I listen /see how his school day is now and i think I wouldn't have coped at all. Not one bit. Yet, I was able to blend in back in the 80's. Also said I talked too much but so many opportunities to simply move.

Now it's just work work work and it's bloody boring. So kids with ADHD simply cannot cope. Far too much work too young too soon. Pressure to meet ARE all the time, SATS always looming. Kids aren't allowed to just 'be' anymore.

Then after school we all played out. On the streets, bikes, go carts, climbing trees - again, movement. Now nobody plays out. My son only has his switch (where his friends are online) and otherwise I'm driving around taking him to lots of 'planned' hobbies.

Modern life is simply shit for developing bodies and minds, lets be honest.

Timeturnerplease · 07/01/2024 21:34

Radpb3rryDel1ght · 07/01/2024 20:53

UsingChangeofName

Do you have data for that because I’m not seeing

”huge numbers of children with really significant and complex needs. None of whom would 'sneak under the radar' or 'not be noticed'. We are talking about children starting school without the ability to make their needs known. No expressive language. No receptive language. With significant sensory needs that impact upon their behaviours. With complex dietary requirements. That bite or hit out. That head bang. That have no recognition of having soiled their nappy. That have no understanding of instructions or the concept 'it is time for us all to...... now'. That sometimes just squeal or scream for a large part of the day.
In some schools 3 or 4 starting school like that”

Where are you getting figures and data for that?

This is anecdata, but we currently have a child similar to the above description in our reception class. He is 2:1 support level in order to keep him and others safe. His parents desperately want him in a special school like his older brother, who has the same rare genetic disorder, but he has come to us because there are nine other children at similar levels of functioning in the reception class of the seven primary schools in our area. Our headteacher has been fighting his corner for him, but there simply is nowhere for these poor children to go and have their needs met.

I’ve no idea if this is replicated nationally - though again, anecdata would suggest so as our headteacher got useful advice from her group of headteacher friends she met on Twitter, scattered across the country - or if the funding cuts have reduced special school places so much that we’re now seeing the impact more clearly.

Naptrappedmummy · 07/01/2024 21:30

SpudleyLass · 07/01/2024 21:26

"Nobody was hiding children in the 80s-2000s".

Nah, just ignoring their obvious needs. I WAS alive for that.

But you can’t ignore children who are non verbal and unable to communicate. I think it’s pointless us continuing this discussion to be honest.

annieannietomjoe · 07/01/2024 21:27

Also genetics - my son for example is ASD...I have recently been diagnosed ADHD...I'm pretty sure it's proven to be genetic - dyslexia for sure.

SpudleyLass · 07/01/2024 21:26

Naptrappedmummy · 07/01/2024 21:19

You’ve asserted that in the past there were thousands and thousands of hidden children, despite the fact you were not alive then to witness this and people that were say it didn’t happen. It’s very much on you to substantiate your claim. I don’t have a vested interest in it being true or false, I just know there is no evidence to support it, and believe my Gran who as I said worked with thousands of families over a 30 year period.

I also think there seems to be a kind of gap which doesn’t acknowledge the time between when psychiatric institutions were commonplace, and this rise in SEN became very apparent. Nobody was hiding children in the 80s-2000s.

"Nobody was hiding children in the 80s-2000s".

Nah, just ignoring their obvious needs. I WAS alive for that.

annieannietomjoe · 07/01/2024 21:24

For me I think a lot is due to tech and understanding the conditions better. ADHD was first identified when kids were expected to sit for lessons (can't remember when) but that doesn't mean it didn't exist before, just unidentified. Now a days life is more complex, more stimulating, more instant gratification- I think that maybe kids learned coping strategies better before when they were forced to wait...simple places like watching TV, there were adverts, you had to wait a week for the next episode ect. Also previous kids had more freedom, less cars so more walking/being outside ect which meant more opportunity to regulate before activities. I think screen time (both kids and parents) inhibits kids learning coping strategies without simulation/less opportunity for learning to mask ect.

Naptrappedmummy · 07/01/2024 21:19

SpudleyLass · 07/01/2024 21:01

How can I substantiate hidden figures?

You’ve asserted that in the past there were thousands and thousands of hidden children, despite the fact you were not alive then to witness this and people that were say it didn’t happen. It’s very much on you to substantiate your claim. I don’t have a vested interest in it being true or false, I just know there is no evidence to support it, and believe my Gran who as I said worked with thousands of families over a 30 year period.

I also think there seems to be a kind of gap which doesn’t acknowledge the time between when psychiatric institutions were commonplace, and this rise in SEN became very apparent. Nobody was hiding children in the 80s-2000s.

drspouse · 07/01/2024 21:07

Naptrappedmummy · 07/01/2024 20:37

But hardly any of the ND parents of non verbal ND children were non verbal themselves as children?

Autism is genetic but the degree of learning disability that goes with it in some cases doesn't seem to be.

SpudleyLass · 07/01/2024 21:01

Naptrappedmummy · 07/01/2024 20:58

Sorry but my gran is 81, and had a 30 year career working with thousands of families across a time when you weren’t alive (nor was I!). Asserting that she’s wrong and that there were many thousands of hidden children really is something you should be able to substantiate, isn’t it?

How can I substantiate hidden figures?

SpudleyLass · 07/01/2024 21:00

Naptrappedmummy · 07/01/2024 20:57

No, she didn’t, that’s the point - she came across only a small number of children who were non verbal and in those cases there was a clear known cause, such as Down’s Syndrome or cerebral palsy. She never met a child who was seemingly in perfect physical health but unable to speak for an unknown or unapparent reason.

She really isn’t a ‘back in my day’ type, she will happily tell you Call the Midwife paints a load of nonsense and that there were plenty of people and children with significant issues. But this wasn’t one of them at that time.

Then she didn't meet them but they absolutely existed.

I appreciate people find it difficult to recognise hidden disabilities but that doesn't mean they're a new phenomenon.

Ae're simply better at diagnosing, have the Internet so better awareness and exposure and a crap selfish government unwilling to meet thr needs of these children because they're he'll bent on cutting taxes for their poxy mates.

My family are a punching bag for you though, keep going if it makes you feel better

Radpb3rryDel1ght · 07/01/2024 21:00

Um don’t think your nan really gets to speak for the whole of society.

ntmdino · 07/01/2024 20:59

Naptrappedmummy · 07/01/2024 20:48

I appreciate the points you’re making @SpudleyLass and @ntmdino but you’d expect roughly the same proportion of profiles across a generation. As it is non verbalism seems to be very very concentrated in the current under 10s. My gran worked with children from the 60s through to the 80s, she met thousands of families and never once met a child who was non verbal without a clear reason such as Down’s Syndrome. It’s definitely hugely increased in just a handful of years.

Honestly, I can't see why you'd expect the same proportion of reported profiles across a generation, even if you ignore the fact that awareness of such things is a development which was only made in the last 10 years or so.

Consider this: an autistic individual's level of disability relative to the society they exist in depends to a great extent on that society's demands of them. Sensory problems, for example, are massively more of a problem now than they were 20-30 years ago, and many orders of magnitude greater than they were 100-200 years ago. On the other hand, a non-speaking (as opposed to non-verbal) individual's ability to communicate now is...well, they actually have the ability to communicate fully and explicitly (comorbid learning difficulties notwithstanding) now, which is something that never existed before.

There's also the fact that non-speaking children were usually completely misdiagnosed and often institutionalised if you go back to the 70s and earlier. That's what happened to one of my great aunts, and she lived an empty life full of inappropriate medication and shock "therapy", and spent the most lucid days of her 70 years screaming at the windows.

Naptrappedmummy · 07/01/2024 20:58

SpudleyLass · 07/01/2024 20:57

Born in '92. Showed all the signs of ASD in retrospect, have a fantastic genetic counsellor ready to support me should I opt to look for an assessment.

The awareness even in the 90s/00s, was directed.

I'm not saying they're misremembering. I'm saying such children were not seen in public life due to stigma and misplaced shame.

Sorry but my gran is 81, and had a 30 year career working with thousands of families across a time when you weren’t alive (nor was I!). Asserting that she’s wrong and that there were many thousands of hidden children really is something you should be able to substantiate, isn’t it?

Naptrappedmummy · 07/01/2024 20:57

SpudleyLass · 07/01/2024 20:54

Also to emphasise a point

"Without a clear reason" is doing a lot of heavy lifting here. So she possibly did know of non verbal children but who did not present as visibly disabled - again, much like my own daughter.

No, she didn’t, that’s the point - she came across only a small number of children who were non verbal and in those cases there was a clear known cause, such as Down’s Syndrome or cerebral palsy. She never met a child who was seemingly in perfect physical health but unable to speak for an unknown or unapparent reason.

She really isn’t a ‘back in my day’ type, she will happily tell you Call the Midwife paints a load of nonsense and that there were plenty of people and children with significant issues. But this wasn’t one of them at that time.

SpudleyLass · 07/01/2024 20:57

Naptrappedmummy · 07/01/2024 20:53

I’m not sure of your age but were you an adult in the 60s, 70s and 80s? If not, how are you so sure they are all misremembering?

Born in '92. Showed all the signs of ASD in retrospect, have a fantastic genetic counsellor ready to support me should I opt to look for an assessment.

The awareness even in the 90s/00s, was directed.

I'm not saying they're misremembering. I'm saying such children were not seen in public life due to stigma and misplaced shame.