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

[SpinningTops]

My son is 7 and on the long waiting list for an autism assessment.

Sometimes I wonder whether he would cope absolutely fine if he was an 80s or 90s child. Maybe it’s rose tinted glasses but modern life seems so chaotic and jam packed, so much to learn at school etc.

He’s in a small class at school and seeing the number of children struggling, so many with ‘special jobs’ to just get them into the classroom, makes me think something is wrong with the system rather than all these children being neurodiverse. And this is an absolutely wonderful school which outwardly he says he loves.

It’s just something I’ve been thinking more and more about recently …

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.

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.

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

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.

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!

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.

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.

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.

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!

Yes! I think he would be an excellent hunter gatherer, he would be the peaceful tool inventor. Wandering round, finding special rocks and sticks to make arrows - probably a lovely existence for him!!

He’d be the same person so may still have an autistic brain but modern life makes the autism more apparent through his coping mechanisms.

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, 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 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.

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?

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/

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.

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?

Well, I’d say it’s a combination of both, the fact that he’s at home means he is avoiding many of the things that make life difficult for him. And because of that he has more energy to be able to cope with things like going out.

So we debated whether we’d be able to go abroad this summer as things were really challenging. But we did and he was so relaxed with the outdoor camping experience and essentially being a bit of a wild woodland child that we managed some trips to big cities that we wouldn’t normally consider.

I guess it’s like that spoons analogy. School / modern living means he’s not got many spoons left by the weekend.

I guess what I'd say to that is, "All these other children are going to the same environment and experiencing the same stimuli, and doing the same activities. So why do they have spoons left and your DS doesn't?"

Don't take that as a criticism. I have 3 who don't have spoons left and in fact their spoons were lost, not just dirty, so they ended up in specialist education.

Your DS, stretching the analogy, is still able to wash his spoons and have them ready for the next day, or the next week, at the moment. He needs the support now before he starts losing his spoons.

Whether it's the fault of modern society (I think it plays a big part) or the consequence of an innately different brain function, this is the world he is living in and not coping with. So he needs the help to cope and live.

He needs support to do as much as he can and to work out what he can do, what is hard but doable, and what he really can't do. The more he can't do, the harder his life will be, so if there are things that can be done to reduce the impact of environments, that's helpful.

@Lougle this is brilliant. A friend explained spoon theory to me a year ago. My spoons are permanently in the dishwasher at the moment. It’s a really useful analogy.

I think mine are down the back of the sofa, sticky and covered in dirt and hair!

This.

Yes, I think we are all overloaded.

Back in the 80s we had a few TV channels, books/newspapers/magazines and the radio. Things were much calmer.

Life is too fast for a lot of people now. We were certainly never meant to be bombarded by information at the speed we are now.

I absolutely agree that Autism and ADHD have a situational component.
I have a 7 year old son with ADHD with very stereotypical presentation that most people think of when they think of ADHD.
In the summer we went off grid for our holiday. It wasn’t for everyone but it really made me think as my son was the calmest and happiest I’ve ever seen him and it’s made me think about how we approach things.

For example, we’ve always tried to get him outside for an hour or so after school every day plus whatever he gets at lunch/ break at school but I think he could actually do with more like 10 hours.
I’ve noticed that even the playpark is designed to be played with in a certain way. Kids don’t climb trees anymore and studies have shown that children now are much weaker than they used to be so kids aren’t getting the same sensory input on their bodies.

The OT recommended ‘heavy work’ to help with calming, attention and sensory input but I noticed when we were away that he got that just as part of our day, collecting, carrying and chopping wood and carrying water.

At home I’ve tried to do all the things people tell you to do for neurodiverse kids, swimming lessons, football, beavers etc but I’ve realised that all of this is structured and he has very little freedom and control over his day because his whole day is structured.

I feel like our life is very sterile and prescribed but at the same time you are bombarded with information. Even our lights are brighter and our music and electronics increase sensory overload.

I had GD and there was no reference to it at all during the assessment. I did find our assessment and subsequent report to be farcical tbh.