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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To be so angry that people like this are in charge of SEND budgets

472 replies

Dalmatron · 04/02/2024 23:38

Has anyone seen the thread on twitter/X about the Warwickshire Councillors at the scrutiny panel for SEND spending?

I am so angry!

Some quotes:
(Talking about institutions) "They had better ways of dealing with them at that time. Let's go back to those ways"
"I don't know what the fix is, I just look back at years gone by those people by whatever means, it was right at the time".
"Is it something in the water?"
"Families are swapping tips to get diagnosed"
"Why are there so many people jumping out with these needs? Where were they when I was at school?"
"Why do so many people have this badge of SEND and special needs?"
"To stop this spend fix the problem at source"
"the plea of a Mother saying Little Willy has ADHD when Little Willy is just really badly behaved & needs some form of strict correction"

How can people like this be in these positions? Why has nothing been done to remove them or apologise? I felt sick watching these clips.

Warwickshire Council thread

https://twitter.com/ElissaNoves/status/1753470720569385023?t=0kxU1GYJe35FgkzxzjTuyA&s=19

OP posts:
Thread gallery
11
x2boys · 06/02/2024 10:04

BertieBotts · 06/02/2024 09:33

Cautious that I don't really want to add to the various armchair theories here but this is one I am not actually aware of any research on and since people have talked about various aspects relating to this. (If anyone does know I would be interested to see it).

A few posters have mentioned this category of children with (presumably autism?) who are non-verbal and have large amounts of disruptive behaviours, as being a growing category or one which seems more represented today than in the past.

Could it be we are seeing this because this is what chronic stress looks like in autistic people?

(Which is two questions: Is it likely that autistic stress manifests in this way? In my understanding it is, but I am cautious that I am not that knowledgeable about autism; and is it likely this is what's happening in this case?)

If you are working with this group do they tend to improve once given proper support (or does that support not really exist, because you can't "support away" modern life?) I feel like there is a perception that there is a specific "non verbal and violent" type of autism vs a "quirky and sensitive" type of autism (aka the old Kanner vs Asperger argument) but these are stress responses, aren't they? And I have definitely seen threads and resources explaining that the delineation of autism into "types" is unhelpful specifically because autistic people can move between different levels of functioning based on their stress levels and the environment around them, throughout their lifespan. And that some developmental delays in autistic individuals could even be caused by this type of stress, not directly, but because if you are under the amount of stress that causes you to literally shut down, then how do you even start picking up social skills, or toilet learning, or speech development, or access skills you previously used? And we know that once someone falls a little bit behind it can be difficult to catch up because there is a feedback loop where they have inadequate skills so accessing the activity or interaction is frustrating or aversive so they avoid it which leads to even less skill practice.

I feel like this would fit in with the idea that modern life is so much more overstimulating, fast-paced, everyone has to fit into a box where we are all the same (though I find this a bit confusing because I always thought that was more what it was like in the past), families have to be two-income and grandparents work to older ages or are already infirm when their grandchildren are born, so children are in outside care longer and younger, there is a lot more commuting in cars rather than walking everywhere, curriculum/homework in infant school rather than a slower pace and more flexible classrooms.

So the theory being that autistic children with this high level of needs might have always been there but in a different environment their stress level would not be so great, so their level of need might not have been so great.

I'm not sure what you mean by high levels of stress ?
At my sons special school most of the children have d a diagnosis of autism and have very complex needs most are completely oblivious to their disabilities and are either non verbal or very limited speech
Yes some factors will have an impact on their challenger behavior
My son has been struggling with constipation for the last few weeks so this had impacted on his behaviour ,but generally speaking yes a very happy boy as long as his needs are met.

Pleasehelpimexhausted · 06/02/2024 10:05

@BertieBotts i have wondered this and I suppose it fits the idea about children being less able to ‘mask’. I’m definitely in favour of schools being slower paced, more relaxing, less reliance on tech - but then people with autism do say they find tech calming so it’s a conundrum. And by the time children even reach school problems are usually evident. I’m definitely interested in the link between screen time and sensory processing disorder, speech issues and anxiety. They all seem to feed into each other, mimic each other etc.

Pleasehelpimexhausted · 06/02/2024 10:07

x2boys · 06/02/2024 10:04

I'm not sure what you mean by high levels of stress ?
At my sons special school most of the children have d a diagnosis of autism and have very complex needs most are completely oblivious to their disabilities and are either non verbal or very limited speech
Yes some factors will have an impact on their challenger behavior
My son has been struggling with constipation for the last few weeks so this had impacted on his behaviour ,but generally speaking yes a very happy boy as long as his needs are met.

Correct me if wrong @BertieBotts but I think she meant high levels of stimulation causing the brain overload rather actual worrying about something, if that makes sense. For example an alcoholics liver is ‘under stress’

x2boys · 06/02/2024 10:08

Pleasehelpimexhausted · 06/02/2024 10:05

@BertieBotts i have wondered this and I suppose it fits the idea about children being less able to ‘mask’. I’m definitely in favour of schools being slower paced, more relaxing, less reliance on tech - but then people with autism do say they find tech calming so it’s a conundrum. And by the time children even reach school problems are usually evident. I’m definitely interested in the link between screen time and sensory processing disorder, speech issues and anxiety. They all seem to feed into each other, mimic each other etc.

The children with the most complex needs can't mask as the are completely oblivious to their disabilities

Pleasehelpimexhausted · 06/02/2024 10:09

Wasbedeudetetdas · 06/02/2024 08:51

In terms of suggestions being helpful though it would be much better to say something like 'certain chemicals may be somehow involved', which is actually still meaningful and doesn't suggest lack of any basic scientific understanding.

PS I should have also added that I am not sure aspirin is really a good idea in pregnancy either, unless for specific directed reasons.

That’s just fancy wording. In the course of causal chat the implication should be apparent, no caveats or long qualifications needed.

TomeTome · 06/02/2024 10:10

So the theory being that autistic children with this high level of needs might have always been there but in a different environment their stress level would not be so great, so their level of need might not have been so great.. I think that possibly you have little or no experience of autistic children with high levels of need (I think we are describing Kanner-style autism as apposed to Asperger’s-style autism??) Honestly in an unnurturing environment no child will develop as they could and for disabled children this is more pronounced but to suggest that you could create a non-verbal child (excluding extreme abusive neglect) by letting them watch too much telly or play on tablets is underestimating the degree of disability. You can no more nurture the nonverbal out of a child than you could nurture hearing into a deaf child. You can of course find aides to circumnavigate the deficit (pecs/signing/music/hearing aides/routine) but it doesn’t disappear.

x2boys · 06/02/2024 10:34

TomeTome · 06/02/2024 10:10

So the theory being that autistic children with this high level of needs might have always been there but in a different environment their stress level would not be so great, so their level of need might not have been so great.. I think that possibly you have little or no experience of autistic children with high levels of need (I think we are describing Kanner-style autism as apposed to Asperger’s-style autism??) Honestly in an unnurturing environment no child will develop as they could and for disabled children this is more pronounced but to suggest that you could create a non-verbal child (excluding extreme abusive neglect) by letting them watch too much telly or play on tablets is underestimating the degree of disability. You can no more nurture the nonverbal out of a child than you could nurture hearing into a deaf child. You can of course find aides to circumnavigate the deficit (pecs/signing/music/hearing aides/routine) but it doesn’t disappear.

Totally agree ,my chilld was diagnosed at three he has had tons of interventions and has always gone to special school where the environment is specifically geared up for children with his level.of need.and the facilities are fantastic yet at nearly 14 hes still non verbal this is due to his level of disability.

BertieBotts · 06/02/2024 10:38

Yes sorry I did not explain this definition of stress. I don't mean stress in terms of when you're worrying about something or you have too many jobs to do. Those are kinds of stress, but I mean in a much broader sense than this.

I have been reading/listening to Stuart Shanker recently and his definition of stress in medical terms is something that causes the brain to use glucose more rapidly than normal. We use glucose constantly, this is basically the "fuel" of all brain processes. So everything from maintaining essential functions like breathing and digestion, to sensory processing, to concentration, to socialisation, to physical exercise. All of these are stresses on the body.

Of course these are all normal processes so everyone is doing them, that's why at the end of the day you're tired and you need to rest, recharge, sleep, eat etc - and anybody would be tired after an extra-active day or one where they learned a lot, socialised a lot etc.

The theory is that when you have some kind of difference causing some of these processes to be harder (e.g. a motor delay making even walking much more tiring than it should be, a speech delay making forming speech quite a concentrated process) or to "take up" more mental energy or bandwidth (e.g. a hearing difficulty so not only are you processing sound you are processing it twice as hard, a sensory processing difference so you are less able to screen out unwanted stimuli such as background noise, an undiagnosed food allergy that is giving you tummy aches all the time) or if there is something environmental which is contributing (e.g. a child living in a chaotic household not getting enough food or sleep, a child worrying about mummy and daddy fighting, a very noisy classroom with a flickering lightbulb) this can both be taxing on the brain in general and in neurobiological terms, it literally uses more glucose meaning there is actually less resource available to spend on things like concentration, learning, impulse control, emotional regulation etc and then that is a self-perpetuating cycle, so children under a higher stress load are not learning as well, and then because they are not learning as well, everything becomes harder so it is even more stressful, or they are engaging in disruptive behaviour and getting told off, which is stressful, and over time you would then see a cumulative effect. This can be learning in the sense of school subjects, or we could be talking about learning at a very early age, the kind of learning toddlers do when they explore the environment, experiment with objects and begin to interact with others and observe the results.

A lot of people are talking about screen time and while I don't think you can make it as black and white as saying screens are terrible/screens are harmless, in terms of this environmental stress, what they tend to say is that a child being quiet is not necessarily the same thing as a child who is calm. So parents (and I fully admit to doing exactly this) will give children screen time because they sit quietly and it seems that they are resting, but internally they might not be resting because their brain is busy processing all of this sensory input from the screen, which can also be quite addictive. The screen time of today (streaming/on demand, dedicated children's channels, youtube, tiktok, games, social media) can also be more stimulating than the kinds of TV programmes which were available to children in past decades. The institute that Stuart Shanker runs is actually quite concerned about stress levels in children generally because they say a lot of children that they see literally do not know what it feels like to be calm. They are continually (neurologically) in a state of high stress/high alert - and these are "typical" children without diagnoses. So if they are seeing that in neurotypical children then it stands to reason that autistic children, who are already likely to be using more of their resources on things like sensory processing, because they often take in more sensory information than the rest of us, and social interaction because social nuance can be difficult for them meaning that a lot of their social interaction is unpredictable, just as two examples, without taking things like speech delay into account, the effect is likely to be more severe in a child who has these differences to start out with. They aren't starting from the same point as everyone else.

TomeTome · 06/02/2024 10:44

I would say that screens are invaluable to many children with neurological deficits but like anything else too much or not the right content of limited use.

listeningagain · 06/02/2024 10:55

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BertieBotts · 06/02/2024 10:58

TomeTome · 06/02/2024 10:10

So the theory being that autistic children with this high level of needs might have always been there but in a different environment their stress level would not be so great, so their level of need might not have been so great.. I think that possibly you have little or no experience of autistic children with high levels of need (I think we are describing Kanner-style autism as apposed to Asperger’s-style autism??) Honestly in an unnurturing environment no child will develop as they could and for disabled children this is more pronounced but to suggest that you could create a non-verbal child (excluding extreme abusive neglect) by letting them watch too much telly or play on tablets is underestimating the degree of disability. You can no more nurture the nonverbal out of a child than you could nurture hearing into a deaf child. You can of course find aides to circumnavigate the deficit (pecs/signing/music/hearing aides/routine) but it doesn’t disappear.

You are correct, I don't, that's why I am asking (and sorry if it's ignorant to do so) but I think I have probably used the wrong term here, so I apologise for any confusion based on that.

People are talking about children coming from mainstream into specialised settings presenting with difficult behaviour and being non-verbal. That is not the same thing as a profound disability with intellectual disability which can categorically never improve, is it? I might be misunderstanding what level of needs PPs are referring to. I suppose I am thinking of what used to be called "selective mutism" (which has been scrapped because it is understood that the person is not CHOOSING to be mute) or children who use only echolalia.

I am also thinking about threads (not this one) which get into the argument of whether or not autism ought to be considered two (or more) separate disorders, where autistic people themselves say "I was a non verbal child and now I can speak because my needs are met" or where children are developing in speech and then seem to regress, so it's not as though they never had the ability, or children who begin to be able to communicate when they are given AAC devices or Gestalt language processing approaches are followed for example. Which perhaps I misunderstood, but I thought this was explaining that "functioning levels" can be misleading because autistic people can have different levels of functioning or support leads at different times of their lives.

People on this thread who have referred to professional experience relating to a higher number of autistic pupils with higher needs are:

@earlyfeb24
@Sometimesnot
@AliceinSlumberland

listeningagain · 06/02/2024 10:59

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BertieBotts · 06/02/2024 11:02

To be clear I am NOT saying parenting causes autism nor that a perfectly nurturing environment can "cure" a disability. I am completely aware that is much too simplistic an explanation and that autism is mostly genetic.

I suppose I am saying is it possible that in some cases there are autistic children today who have a higher level of stress causing higher levels of need than they might have had in the past. It is more of a question around a specific group which PPs have described as increasing.

RainbowZebraWarrior · 06/02/2024 11:13

"Could it be we are seeing this because this is what chronic stress looks like in autistic people?"

Its a definite factor in (in some cases) my personal experience.

My DD was diagnosed with Autism at 11 years old. I was diagnosed at 51. I managed (just about) at school as in I got through it. I was largely able to hide away or blend in as needed. As a shy, nervous child, I didn't like school, but it was mostly manageable.

When we were both diagnosed, it is and was very clear that our Autistic traits could be traced back to birth / early childhood. I only state that because I want to be clear that the Autism is separate to the additional environmental impact of Anxiety and stress. This is stress that we simply are seemingly unable to avoid in modern day life.

I've learned a lot about Autism in the few years since I've been diagnosed. I've also suffered Autistic burnout and shutdown as an adult. Mainly due to very stressful situations, perimenopause being one, and other health conditions talking their toll being another. Menopause and stress absolutely amplify Autusm, and studies are now being conducted around this.

The bottom line is, I was able to sort of manage when I was younger, but masking takes its toll, and the wheels tend to come off later in life. The kind of burnout and shutdowns I'm seeing in my 12 year old DD now (and instances of being non verbal) points to the fact that modern day life and schooling are exacerbating her issues massively. She isnt coping. The sheer levels of anxiety and stress are a major contributing factor, I'd say. The changes for her happened after moving from First school to Middle school.

Home is her safe space, school isn't / wasn't. I've been pushing for changes for the past six months and became very frustrated when they weren't happening and I saw her mental health declining rapidly. A couple of weeks ago, I gave an ultimatum to the school and changes were made. So far, the change is astounding. It's early days, but it shows me that it has had a positive impact on her. Unfortunately, she will move to High School next Sept, and I'm going to be reliant on the new school understanding and implementing what she needs to avoid the crisis level we reached recently. (With or without an EHCP)

listeningagain · 06/02/2024 11:15

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TomeTome · 06/02/2024 11:19

BertieBotts · 06/02/2024 11:02

To be clear I am NOT saying parenting causes autism nor that a perfectly nurturing environment can "cure" a disability. I am completely aware that is much too simplistic an explanation and that autism is mostly genetic.

I suppose I am saying is it possible that in some cases there are autistic children today who have a higher level of stress causing higher levels of need than they might have had in the past. It is more of a question around a specific group which PPs have described as increasing.

People are talking about children coming from mainstream into specialised settings presenting with difficult behaviour and being non-verbal. That is not the same thing as a profound disability with intellectual disability which can categorically never improve, is it?

I’m not totally sure I understand what you are asking but I can try and answer. All disability can be supported, and that support can help alleviate difficulties and so reduce the impact of that disability in both individuals and society. So the underlying disability remains but the symptoms can be alleviated.

I can’t really see how a more severe presentation would be made worse by modern life to the degree you are suggesting.

listeningagain · 06/02/2024 11:20

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RainbowZebraWarrior · 06/02/2024 11:31

@BertieBotts I do know what you are trying to say. I'll try and demonstrate something here by way of a personal example.

My DD and how her Autism presents:
Shy.
Quiet, but able to speak at times.
Anxious, but manageable to varying degrees.
Quirky with quite obsessive interests.
A bit of a loner, but enjoys small freindship group.
Some sensory issues with foods, smells and noise. (Sometimes wears ear defenders)
Strong preference for being at home.
Gets overwhelmed easily.
Doesn't like change.

My DD and how she presents when stressed:
Very shy and anxious about everything
Questions everything over and over
Cannot concentrate or remember anything (attention deficit kicks in)
Situational mutism present daily
Often non verbal for days - a trauma response to stress.
Panicky (describes it as terror sometimes)
Flight risk at school (runs out of classroom)
High and constant levels of anxiety
Gets upset and cries every single day
Self harms
Doesn't want to go out
Major sensitivity to noise (wears ear defenders all the time and melts down due to noise from others)
Exhausted and sleeps as soon as home from school - shutdown.
Constantly overwhelmed
Intrusive thoughts increase
Feeling burned out
Absolutely cannot cope with any level of change, even if it is a 'nice treat'
Totally depressed and 'doesn't know how to feel'
Motor skills affected - loses ability to write.
Self care massively affected - too tired and overwhelmed to wash hair etc.

Wasbedeudetetdas · 06/02/2024 11:34

Pleasehelpimexhausted · 06/02/2024 10:09

That’s just fancy wording. In the course of causal chat the implication should be apparent, no caveats or long qualifications needed.

It's meaningful wording.

firef1y · 06/02/2024 11:35

PosyPrettyToes · 05/02/2024 06:35

All those people saying “these children weren’t around when I was at school” - think of the kids at school who were labelled ‘stupid’, ‘naughty’, ‘weird’. Think of the classmates you had who had a sibling who mysteriously didn’t go to school, or didn’t live at home. SEN children have always been there. Their needs were just being ignored.

Even in the classic school stories that we read (Enid Blyton for example) there are characters that looking back now we would recognise as having SEN.
2 characters from the top of my head that almost definitely would be assessed for ADHD (and possibly autism) are Irene and Belinda from the Mallory Towers series of books. Both described as absolutely brilliant in their niche subjects (art for Belinda and music/maths for Irene) and yet completely "scatterbrained" and "dunces" at everything else. As someone with (undiagnosed until I was 45) autism, I really did emphasise with those characters, I was brilliant at Maths, but struggled to get myself from A to B.

ntmdino · 06/02/2024 11:54

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As I said earlier...it comes down to reproduction and social value, in my opinion. Autistic people are more able to get ourselves into positions of high social value (ie well-paid information-based jobs that we're well-suited to) now than in days gone by, which drastically increases the chances of us finding someone to reproduce with. On top of that, we're no longer filtered out of mainstream education at the early stages at the rates previously seen.

That's then multiplied because we also tend to find communication with other autistic people (who we can find more readily now) far easier than with neurotypical folk, which increases the effect even more - and two ND people are overwhelmingly more likely to produce ND offspring.

Compare that with physical disabilities, where - as you said - many parents are terminating at the first sign of congenital disabilities, and medical technology is able to correct for far more disabilities than ever before (not to mention some being outright prevented, like polio being eradicated).

listeningagain · 06/02/2024 11:54

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listeningagain · 06/02/2024 11:56

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Pleasehelpimexhausted · 06/02/2024 12:00

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Yes the new belief is that the more sensory experiences babies - even newborns - are exposed to the more they will develop, but I disagree. Baby sensory classes look quite stressful and alienating for them - flashing lights everywhere, loud noises, odd sensations.

listeningagain · 06/02/2024 12:06

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