To think perhaps my son isn’t autistic but instead modern society is too challenging for him to cope with.

Mine love school but go private so there’s more leeway in the curriculum, I suppose. But they were in the state sector for the first few years and I thought it was fantastic. I say this as someone who was not educated in the UK.

Do you mind sharing what the main things think are wrong with the current system and you would change in the current system?

Theres a huge amount we don’t know about the gut-brain barrier. Plenty of research has suggested a link between the microbiome and mental health, depression etc. A lot of autism communities report (non scientifically) improvement of behaviours when limiting certain food types etc. We don’t know what we don’t know but I don’t think we can completely disregard the possibility that diet during pregnancy has an impact - after all we know alcohol causes FASD and lots of research is now looking at steroids being linked to AdHd and antibiotics to asthma. Food is chemicals too. After all we know pregnant women shouldn’t eat too much tuna due to mercury levels etc.

I should note I have close family members with profound autism which presents in a way that means they are non-verbal and unlikely to ever be self sufficient, and who I love very very much, so this doesn’t come from a place of judgement.

I think it's hysterical that you're so dismissive. There is a growing amount of evidence that links gestational diabetes and neurodevelopmental disorders. For a start you could read: https://pmc.ncbi.nlm.nih.gov/articles/PMC7933135/

Would you say he presents as neurotypical in holidays, or that he presents as neurotypical as long as you avoid all the things he would find difficult?

This is exactly what I've been thinking and saying for some time. I got an ADHD diagnosis 15 years ago, as an adult, after a horrible time in education. More and more though, I just think why do we try and mould people to systems rather than make systems fit peole?

Seems so obvious to me. It's kind of the equivalent of modern clothing, we think something is wrong with us if the dress doesn't fit but how could a mass produced dress fit thousands of different figures perfectly? You need something tailored to you for that. We're in an age where the possibilities for tailored education are immense, why isn't anyone trying to change the system?

Money and short-termism in politics are the current answers but it's so ridiculous. Instead of finding solutions the current system is convincing loads of perfectly capable people that they aren't capable which is a grievous waste of resources and future potential.

Yes, on the one hand we have to make adjustments for our kids so they can get by and learn. And sometimes that means changing the environment we put them in, not taking them to the supermarket if that is so overstimulating and distressing that they can't cope, and not taking them through the gift shop, and so on. But on the other hand the modern world is where we all live now and not being able to shop is pretty disabling for a teen or a young adult. A disability is a disability.

You say it doesn't affect DC so much in the school holidays but if you can't take him to an NT property because of the gift shop then his holiday activities must be very much affected. It's more like, in the school holidays your family can adapt to his needs, but even a small mainstream classroom cannot adapt so much for a child with such strong needs and no diagnosis or additional support. (Sometimes bigger schools are actually better because they have more flexible resources.)

So there are no easy answers. One thing I would say, if your DC has autism and it's affecting his life and all your lives - you still want to do "ordinary" things with your other DC but you can't! - then a diagnosis will be beneficial in the long run. It'll bring insight into what your DS finds difficult and different kinds of help and support, not always exactly what you want or what DC needs but it's a start. I teach students and some kids fly below the radar at school with a lot of parental support but then they come to university and fall apart because they no longer get that support. And adult diagnosis and support is even slower than for kids. So I would plod along with getting the investigations and diagnosis now.

This is incredibly heartening because I feel exactly the same and I sometimes worry that I'm just inept and stupid. I'm not, I'm very able but the current set up does not suit me at all. So many log ins and notifications - my stomach lurches with every ping. I need to redesign my life so I can not have a smartphone. I'm happy doing a bit of computer work but the way life has been set up now has just totally exceeded my ability to do loads of different admin jobs every day on a tiny screen. Sadly, I run a business so I'm not sure how to achieve this.

Yes. There are different levels of autism/sensitivity and once the environment reaches a certain threshold the autism mysteriously (or not) appears.

Even during current times, this can happen as a child grows older. Younger children tend to not have very well developed social skills so the autistic child fits in well and goes under the radar but as the other kids start forming more complicated friendships, the autism suddenly appears. This happened with my eldest DS who is more mildly autistic than younger DS.

In my case, I was always more comfortable with family or on my own, helping my grandad on his allotment, fishing, sewing, cooking - all the things humans would do naturally. It isn't natural to put a kid in a room full of 30 noisy, erratic strangers. Autistic people have always been far better suited to a hunter gatherer way of life and we'd have been very useful at spotting predators - my own startle reflux is excellent!! But in modern times it can be embarrassing because I scream and bolt at inappropriate moments!

I think I am ND (close family are and can't lead normal lives and need care). I think I coped far better before the digital revolution. I just can't cope with the constant messaging, social isolation (I only made friends when I was with the same people day in day out and office life isn't like that now, with WFH and hot desking) and not having instructions given to me verbally in real life with in-person meetings or training round tables or in classrooms. The pace is too much and it often gets too much all at once.

It’s both. Although I’m not sure the world is actually harder now I wonder if it’s partly that we cannot abuse kids into masking and compliance.

i went through school undiagnosed. Struggled but not overtly outside the home because I knew if I acted differently I would be bullied or punished. My attendance was shit but there wasn’t the pressure on attendance matters there is now etc. my parents could smack me to get me to comply (I was always being smacked for what I now know was autistic or adhd behaviour- the behaviour never changed nor did the punishment that never worked) and teachers making you sit out the class for asking weird questions and other kids bullying you for being weird was somehow acceptable where now that would never be allowed. I’m sure if I went through school now with increased awareness likely I would have got a diagnosis before adulthood. But the fact is I was still autistic then just not diagnosed. You could smack and shame kids back in my day and unless you were a non verbal boy who played with trains people never thought autistic just thought I weird girl.

It is estimated that children with ADHD may receive up to 20,000 more negative messages than their peers by age 10 or 12, with a significant portion of these likely received before age 7.

It got so bad at my DGD's school that the OTHER children were reporting to their parents how many nasty comments were made by staff to her. In other words, the nice, quiet, well behaved children noticed the school staff said horrible things. A couple of other parents messaged her mother and passed the info on.

But yeah. These children aren't resilient enough. My arse.

Oooooohhhhh.

Perhaps you need to go and explain this to the educational psychologists and paediatrians that diagnose ADHD & autism.

There's nothing wrong with those kids that a bit of hardship won't help them overcome! You'd save the country millions!

In some ways modern life is harder for those who are ND but in other ways it’s easier. Generally more people try to be more understanding than they once would have been. I was born in the 80s and although I’ve never been diagnosed, I would bet my house that I am on the spectrum somewhere. I really struggled my entire childhood as many ND girls do. I’m glad my older daughter was born in the 2000s as although there was a wait, she was diagnosed with autism and that’s had a positive impact on her.

I had gestational diabetes and was told it was a risk factor and it was noted in my sons autism assessment.

i think it has to be because the demands in school were not so relentless and difficult AND ditto those of the 'social world'.

I was a child in the 60s and 70s and at primary was in a class of over 40 children. There wasn't anyone you'd identify in the modern era as autistic (and I went to a village school - everyone I ever encountered in childhood went to that school).

I do recall the occasional child at secondary who was probably deemed 'eccentric' (or similar, of the moment descriptive word). But I am convinced it's as other pp have suggested, that it was easier to cope with life and school in those days. I think it's become ridiculously difficult for some children to navigate.

Actually it is mainly genetic. I knew as soon as I knew I was having a boy the chance of autism was high due to it being in both families. Nothing to do with me scoffing cakes.

On the developing foetus. A factor.
Why not look up the research?

That is true - staff were often awful to me in secondary plus uniforms were in my secondary more inflexibale than DC had - we had blazers which had to be on till someone fainted every year.

However the low level class room disruption - losing 10 minutes every lesson to lack of pens - the noise level - even phycial violence in front of teachers - didn't happen in my 90s secondary - DH school was rough and he said once in tops sets as he was that stopped.

On top of that kids have had rigid place seating in class rooms even if they struggled to see hear and were getting constantly pestered by other kids they couldn't move - over my DC time at secondary toilet basiclly got restricted to in reality non existantant access. DD2 coped with that just about but when they started making it incredbly hard for them to actually eat at lunchtime she really started to struggled just being there.

I think some schools can be hard on all the kids - the ND ones tend to be the canaries in the coal mine and more obviously in distress first.

I am autistic but wasn't diagnosed as a child. I found school incredibly difficult to the point I refused to go in the end. I ended up in care because of that.

OP, it’s quite possibly both. I am 45 and NHS diagnosed AuDHD. Perimenopause doesn’t help but OMG, modern life is beyond me. I’m Masters educated and at the gifted end of the academic spectrum, but particularly since everything went digital with Covid I just can’t cope with daily stuff like banking. I genuinely feel disabled. I have a meeting with my ADHD nurse in two weeks to discuss exactly that - how challenging modern life is for an ND person - before I drown. I have had to change the trajectory of my career (architecture-ish) because it all became digital and even with adjustments, I couldn’t adapt enough. Paper? Yes. Pen? Yes please. Site visit with ten plans on an iPad for a house with thirty rooms (I work with country estates)? Ohhhh noooooo. I’ll just make the tea.

Not as clever a remark as you think.
Try researching what I said instead.

There were bright lights and "too much happening" in 1970 or 1930.

No you are not right. Children lived very differently then.

They especially spent far, far more time outside, did not have to go to breakfast clubs and after school clubs during the week, they ate different food, and had far less time with any kind of screen.