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Original poster

A diagnosis one

280 replies

CarGoat · 27/10/2024 09:18

Ok, I know diagnosis etc.. has been discussed to death on Mumsnet, but ...

Recently I have come to realise that in every single family I know (as in, families I'm friends with or know enough to have been to each others homes, kids have play dates etc...) there is a child with either an established diagnosis of ADHD or Autism, or there is a child undergoing assessment/on wait list for assessment.

The final realisation, (and I guess what prompted this thread) came when the mum of my child's best friend told me he has recently been diagnosed with autism. I have never seen any traits and had no idea. He's a lovely, well behaved kid, has loads of friends, interests, plays computer games with my DC, they hangout together, play games together, chat together,.do sport together. I understand there must be some difficulties his mum has observed which led to diagnosis etc.. it's just, he seems fine!

I then reflected on all DC's other mates and realised just how many either have a diagnosis of autism/ADHD or have siblings with this. My nephew is in the process of assessment for autism. My other nephew is also being considered for ADHD and has assessment coming up.

This is mad.

These children, while they may well meet criteria and I am not doubting that, they just don't seem much different to the average kid in terms of communication and behaviour etc... so all are relatively 'mild' in terms of presentation (i.e. autism is not of a level that's non verbal, the children have good peer relationships etc). I know people will tell me you don't thave levels like 'mild', but I'm not sure how else to explain it - just that the children all 'appear' perfectly fine. They just seem like normal, average, healthy children.

So ...

Is this just a quirk of where I live, in that in my village there just happen to be loads of children with ADHD and Autism, but this is not reflective of wider society?

Or

Is this reflective of wider society? Are the levels of diagnosis of these conditions now this prevalent?

And if the latter - shouldn't we make the criteria for diagnosis harder and just acknowledge that we are all a bit neurodiverse to some extent, and make adjustments to the schooling environment to account for that, rather than having to fund all these individual assessments and locate the problem in all these children?

I just think it's ridiculous to diagnose so so many children and if nearly every family has a family member with a diagnosis then surely the diagnoses are a bit redundant and meaningless?

(I know some people will not like this post, sorry. I am putting on my hard hat)

OP posts:
NImumconfused · 27/10/2024 10:40

mumzof4x · 27/10/2024 10:34

My DD is 14
If you met her you would see a delightful / polite and beautiful young lady.
You would have absolutely no comprehension of her daily struggle : she will be over analysing your body language and worrying if you really don't want to be talking to her/ the way you look at her and hold eye contact or not .
She will be struggling to hear you if there is any other noise.
Is she can hear you chew or swallow she is wanting to scream inside and if she can hear you breathing it scares her. She worries people will stop breathing .
She will be struggling if she can smell your perfume because she gets a strange taste on her mouth and will want to go and rinse her mouth out and it will prevent her from eating for the rest of the day.
It is so hard for her to actually be there / smiling / PERFECTLY made up because of her 2 hr getting ready routine at home , but inside she is so exhausted just from pretending .
When she gets home she will unmask and be very challenging. She won't sleep for long because she doesn't like the feel of her eyelids on her eyes. She will only eat in the bath which is her safe space that night and she will worry endlessly about being up at the exact time to prepare in exactly the same way for over two hours to go to school and pretend she's okay again the next day .
She will call me from the toilet and not speak but just want to hear my voice when she's having a panic . Sometimes she will call her elder l at uni and they step away from their day and talk to her silence too.

And then she comes out with me and meets my friends who say
Gosh
She looks normal
Are you sure she has autism?
If only you knew

Mine's just turned 16 but otherwise you could be talking about her.

OP you have zero understanding of what goes on in these young people's lives. For many of them, holding themselves together to seem "normal" in public comes at a massive cost. And yes, a lot of things could be done to help them in schools that don't require a diagnosis, but they aren't - in fact many schools are becoming more and more hostile places for neuro divergent young people with their rigid uniform and behaviour rules. Just go read some of the stories on the the Facebook group Not Fine in School if you want to find out how little help and support is available to these kids.

Original poster
CarGoat · 27/10/2024 10:39

BigManLittleDignity · 27/10/2024 10:33

“Not normal”?!!
Where did you pluck 1% from?

You are really showing your true colours.

Edited
Show quote history

I meant 'normal' as in a normal distribution curve - as in - there is a range of 'normal' behaviours etc.. in any given population. Things only get to the stage of diagnosis usually (or previously) when behaviours etc.. sit outside the normal distribution.

For example - with learning disability. There is a normal distribution of IQ within the population. To get a diagnosis of learning disability your IQ has to sit waaay outside the average range and is usually lower that over 99% of others.

If something is 'normal' within a population, I can't see why it's considered 'disordered' (a equally horrible term). If half the population or even 10% of a population experience the same thing, then it's not really outside the 'norm'.

OP posts:
FuzzyGoblin · 27/10/2024 10:36

@mumzof4x one of my children is the same. Doesn’t stop the autism and ADHD (and sensory processing, auditory processing, ARFID, dyspraxia and dysgraphia) diagnosis being correct.

SnuffleTruffleHound · 27/10/2024 10:35

do you think parents of ND kids do all the hard work for fun? It’s just something to do to pass the time?
getting a diagnosis is not a quick or painless process, for many its years and a lot of tears. It’s a journey full of ignorant people gaslighting just so you can put your child on an even playing field with all the NT kids who the world is created for.

mumzof4x · 27/10/2024 10:34

My DD is 14
If you met her you would see a delightful / polite and beautiful young lady.
You would have absolutely no comprehension of her daily struggle : she will be over analysing your body language and worrying if you really don't want to be talking to her/ the way you look at her and hold eye contact or not .
She will be struggling to hear you if there is any other noise.
Is she can hear you chew or swallow she is wanting to scream inside and if she can hear you breathing it scares her. She worries people will stop breathing .
She will be struggling if she can smell your perfume because she gets a strange taste on her mouth and will want to go and rinse her mouth out and it will prevent her from eating for the rest of the day.
It is so hard for her to actually be there / smiling / PERFECTLY made up because of her 2 hr getting ready routine at home , but inside she is so exhausted just from pretending .
When she gets home she will unmask and be very challenging. She won't sleep for long because she doesn't like the feel of her eyelids on her eyes. She will only eat in the bath which is her safe space that night and she will worry endlessly about being up at the exact time to prepare in exactly the same way for over two hours to go to school and pretend she's okay again the next day .
She will call me from the toilet and not speak but just want to hear my voice when she's having a panic . Sometimes she will call her elder l at uni and they step away from their day and talk to her silence too.

And then she comes out with me and meets my friends who say
Gosh
She looks normal
Are you sure she has autism?
If only you knew

BigManLittleDignity · 27/10/2024 10:33

CarGoat · 27/10/2024 10:15

Thanks HangryBear

But can't we just have the understanding of individual difference without labelling almost 40% of children as not normal when in fact, they are very normal given 40% are having difficulty...

Surely diagnosis should be for the extremes (1%)...

If the school system could have the understanding and adapt for individual difference without the need for individual families and children to seek diagnosis this would save time and money, and the children themselves wouldn't see themselves as different

“Not normal”?!!
Where did you pluck 1% from?

You are really showing your true colours.

AmaryllisNightAndDay · 27/10/2024 10:30

Children and adults don't usually get a diagnosis unless their condition is having a significant effect on their lives. Even if it's not an effect that their friends' parents have noticed. The child's own parents may already be making a lot of adaptations unnoticed.

Plus children don't get to stay in the school system forever. In school children don't need a diagnosis to "access the curriculum". At least in theory children get whatever support they need regardless of diagnosis. But when they reach adulthood and university or work, no diagnosis = no adjustments and no disability support. And a very long wait for evaluation in the adult system.

FuzzyGoblin · 27/10/2024 10:30

I think you are being massively ignorant and unreasonable about how neurodiversity impacts people and how hard it is to get a diagnosis.

If you were my friend and I knew you held these judgemental and incorrect views, you wouldn’t be my friend anymore.

It must be said though that most people who think neurodiverse traits are “fine” as you put it or normal, often think that because they are neurodivergent themselves and see these issues as normal because they are to them.

LoveSandbanks · 27/10/2024 10:29

Neurodivergent people mask. My son used to do a cracking impersonation of normal for a while but at home (his safe place) was an entirely different story.

masking is exhausting and cones at a price. I can have a day trip and function perfectly well but you can bet that as soon as I get home I’m going to bed to give my poor, overstimulated brain a rest.

66babe · 27/10/2024 10:28

I used to think exactly like you .. until my much loved youngest grandson was born and from a very very young age displayed some really concerning behaviours
He is in the middle of the assessment process now and we will do everything we can to be sure he has a safe and happy life but the last 6 years have almost driven my daughter beyond coping
He doesn't sleep
He's violent
He's only allowed to school for 3 hrs a day
His diet is really limited
We have 7 other grandchildren and it's been an absolute eye opener , my heart goes out to anyone going through this and I'm hoping to learn as much as I can to continue to support him
My biggest fear is that no one will like him

mugglewump · 27/10/2024 10:26

The main difference is that neurodivergence is now socially accepted and has provided an explanation for a range of behaviours and learning differences. The child that was once considered precocious, genius at maths, bit of a loner, a perfectionist, has troubles in the friendship group, is highly strung, happy with his nature books and animals, loves collecting things or is just obsessed with trains is now understood as having austistic traits. And many people prefer a medical diagnosis to being considered a bit odd, rude, obsessive or poorly behaved.

As a supply teacher, I go into many different classrooms and have to quickly pick out those children showing neurodivergent traits so that I can adapt my classroom management for them. And there are probably 3 to 5 in every classroom and you spot them by the fidgeting, the inability to stop talking, the slower processing, the inappropriateness of their behaviour - eg just when you have settled everyone to sit and listen, the neurodivergent child starts bombarding you with questions or just talking at you about a very specific topic.

In my own family there are several with an ADHD diagnosis, and I think both my sisters are on the spectrum too. In addition, my DH has self diagnosed himself as autistic, my DD has ADHD, my DS is most likely on the spectum and I am probably neurodivergent in some ways too - so basically, my whole family. And a diagnosis is not necessary, except DD who is medicated, but it does help us understand ourselves and are happier because of it.

HalloweenHaribo · 27/10/2024 10:20

CarGoat · 27/10/2024 10:15

Thanks HangryBear

But can't we just have the understanding of individual difference without labelling almost 40% of children as not normal when in fact, they are very normal given 40% are having difficulty...

Surely diagnosis should be for the extremes (1%)...

If the school system could have the understanding and adapt for individual difference without the need for individual families and children to seek diagnosis this would save time and money, and the children themselves wouldn't see themselves as different

'Not normal'??

Are you deliberately trying to rile people up here?

Isitjustmeoranyoneelse · 27/10/2024 10:18

CarGoat · 27/10/2024 10:15

Thanks HangryBear

But can't we just have the understanding of individual difference without labelling almost 40% of children as not normal when in fact, they are very normal given 40% are having difficulty...

Surely diagnosis should be for the extremes (1%)...

If the school system could have the understanding and adapt for individual difference without the need for individual families and children to seek diagnosis this would save time and money, and the children themselves wouldn't see themselves as different

Just because a diagnosis affects a large group of people doesn't mean the diagnosis isn't right.

Original poster
CarGoat · 27/10/2024 10:15

Thanks HangryBear

But can't we just have the understanding of individual difference without labelling almost 40% of children as not normal when in fact, they are very normal given 40% are having difficulty...

Surely diagnosis should be for the extremes (1%)...

If the school system could have the understanding and adapt for individual difference without the need for individual families and children to seek diagnosis this would save time and money, and the children themselves wouldn't see themselves as different

OP posts:
pinkroses79 · 27/10/2024 10:14

I knew a child with autism and to me he didn't seem different from other children. However, now he is older it is a lot more obvious.

TigerRag · 27/10/2024 10:13

HangryBear · 27/10/2024 10:05

I have 37% send in my class (year 3) they all have a genuine need.
If I’d taught the same class 20 years ago when I first qualified only 2 of them would have been on the SEN register, the others would have been naughty/badly parented.
The children haven’t changed, understanding and diagnosis has.

I wonder how many of that 37% would have been in special schools years ago

"The final realisation, (and I guess what prompted this thread) came when the mum of my child's best friend told me he has recently been diagnosed with autism. I have never seen any traits and had no idea."

I remember someone pretty much saying the same thing. Utterly bizarre that people who know me including my sister who has a master's in psychology would disagree with her... But she seemed to disregard the fact it's a spectrum. Fuck knows how she got her job as SENCO

ssd · 27/10/2024 10:07

I'm older and i do agree with you. Its like anxiety and depression. I'm guilty of saying i have anxiety but after reading posts on here i realise i don't really. I'm just a bit of a worrier. Real anxiety and depression stops people in their tracks.

Isitjustmeoranyoneelse · 27/10/2024 10:06

You don't know what they're like in the home environment.

HangryBear · 27/10/2024 10:05

I have 37% send in my class (year 3) they all have a genuine need.
If I’d taught the same class 20 years ago when I first qualified only 2 of them would have been on the SEN register, the others would have been naughty/badly parented.
The children haven’t changed, understanding and diagnosis has.

DoAWheelie · 27/10/2024 10:02

From the outside I look really normal. I communicate well and get on with almost anyone. Did well in school etc. I run my household successfully, budget well. I appear a normal mid thirties adult woman.

But when I'm home alone I fall apart. On Thursday my dinner was slightly undercooked and it freaked me out so much I haven't eaten since. I might try and eat later but it's going to involve some panic attacks. When something sets me off I can hold it together just long enough to get home to where I feel safe but then I meltdown.

People with ASD/ADHD are really really good at seeming normal to the outside world. Only my late OH really new the extent of how much I struggle. My own mother only knows bits and bobs of it. My step dad has never seen any of it.

Dramatic · 27/10/2024 10:02

CarGoat · 27/10/2024 09:52

I'm not a newbie, I've changed my name. But I have long periods of never looking at Mumsnet and relatively newly back to looking often. It's been a few months of not looking. Yes I know it's been discussed to death.

I have noticed that generally in society, there seem to be more people diagnosed, I've heard on the radio etc.. but it's only recently I've noticed how close to home this is. Like, literally every family we know has someone with a diagnosis. This only really hit me when my son's beat friend was diagnosed because he was kind of the last child not to have had a diagnosis,.and now even he does. Just seems like if everyone has a diagnosis, then what's the point in diagnosis.

I totally totally.inderstand that children's needs are not adequately mer at school and that's where diagnosis is helpful. But if nearly every child has a diagnosis, surely not would be easier for schools to change than for every child to have to go down the diagnosis route?

Show quote history

I do completely understand where you're coming from. If half of children in mainstream end up with a diagnosis it's not really neurodivergent anymore as it's just as much the norm as not having a diagnosis.

Original poster
CarGoat · 27/10/2024 10:01

ItsTheGAGGGGGGGGG · 27/10/2024 09:58

Yawn yawn yawn. Because children with Autism/ADHD are so obviously not fine that does that appear ‘fine’ must not be neurodivergent

But surely if every household has a child with ADHD/autism, then this makes a mockery of the diagnosis? I think the criteria for diagnosis need to be made more difficult and schools should adapt to make sure they can cater better to everyone's needs without families having to go down the assessment route which is lengthy and costly

OP posts:
ItsTheGAGGGGGGGGG · 27/10/2024 09:58

Yawn yawn yawn. Because children with Autism/ADHD are so obviously not fine that does that appear ‘fine’ must not be neurodivergent

Original poster
CarGoat · 27/10/2024 09:56

mimblewimble · 27/10/2024 09:49

The useful point to pick out from your post, OP, is that we should make adjustments to the schooling environment to make it work better for neurodivergent kids. Because that would benefit all kids.

Investing in education - smaller class sizes, smaller schools, less exam pressure, better conditions for teachers as a starting point - would probably prevent quite a few ND kids from experiencing the difficulties in school that they often do. And would probably save councils money in the long run.

I'm not getting dragged into discussion about your other points, sorry.

Edited

Yes I agree.

I think the education system needs to change because currently I feel children are labelled for not fitting the current education structure, whereas in reality it's normal for children to find the school environment challenging and it is schools that need to adapt, not the kids.

OP posts:
Original poster
CarGoat · 27/10/2024 09:52

BigManLittleDignity · 27/10/2024 09:35

Are you a newbie or a name changer? This is really goady, has been done to death and the faux innocence doesn’t really wash with many of us.

I'm not a newbie, I've changed my name. But I have long periods of never looking at Mumsnet and relatively newly back to looking often. It's been a few months of not looking. Yes I know it's been discussed to death.

I have noticed that generally in society, there seem to be more people diagnosed, I've heard on the radio etc.. but it's only recently I've noticed how close to home this is. Like, literally every family we know has someone with a diagnosis. This only really hit me when my son's beat friend was diagnosed because he was kind of the last child not to have had a diagnosis,.and now even he does. Just seems like if everyone has a diagnosis, then what's the point in diagnosis.

I totally totally.inderstand that children's needs are not adequately mer at school and that's where diagnosis is helpful. But if nearly every child has a diagnosis, surely not would be easier for schools to change than for every child to have to go down the diagnosis route?

OP posts: