To think autism gets worse with each generation

I find it fascinating listening to family tales through a ND lens. The great uncle who kept himself to himself, spent hours in a shed and liked trains; my grandmother who was a bit odd, set in her ways and was a bit of a battle axe who rubbed people up the wrong way etc. So many times now I think that surely they're describing someone with autism

As the parent of an autistic child, I really cringe when I read things such as the above. Being "a bit odd" does not mean autistic, nor does "keeping yourself to yourself", or liking trains, nor "being a bit of a battle axe and rubbing people up the wrong way". It's perfectly 'normal' for all of these traits to be in ND people, they certainly aren't a surety of describing an autistic person. This is horribly minimising of the struggles that many autistic face.

On another note I'm sure the prevalence of autism is drastically increasing, and I don't believe it's because there is more awareness. Looking back in primary school I can't think of any children who displayed any stereotypical autistic traits, but in primary schools now there seems to be several in each class.

There is a theory that autistic people are more likely to have a relationship with someone who is ND also, meaning that children will inherit characteristics from both ND parents.

I'm not applying my thoughts to every person who would be identified as ND. I am not saying this is some superpower and people aren't disabled by it.

I would like to know if the difference compared to an NT person in some cases is not necessarily a fault or abnormal. Are there people out there in this ND group ( which is huge clearly and probably still massively underestimated) who don't feel disabled in themselves but rather disabled by society. In a different society with different social norms, might there be individuals who fall within this ND category who have significant skills far beyond say me for example, yet the ways in which they are disabled are because of the social structures we live in which are incredibly difficult to conform to. Would they see themselves as defective in some way? I can believe there are people like this who might not.

I don't know how it is for anyone outside myself and their lived experience so as said prior, only each individual can say how it is for them and if course their lived experience trumps my thoughts and opinions.

Also, the NHS has been hugely ideological recently and clearly serving two masters - Asclepius and unfortunately, mammon from their American godessed, big pharma

True. My DS gets very upset at people misbehaving and this seems to happen a lot at school.

Not true in my family. My generation is affected less than the one above and below. The generation above is worst off.

This!

The original meaning of high functioning was to do with IQ. So, using the original meaning, if your DS has an IQ of 135-145, he would have been considered to have high functioning autism. Using the actual original meaning, that wasn’t a judgement on the amount of support DS requires. The problem is people started to use it to mean something else, how much support someone needs. Which is why functioning labels aren’t helpful.

I should have said originally referred to IQ (LD or normal to normal plus). The meaning became blurred over time and got even more lost (or replaced) once Autism and Asperger’s was merged into ASD. It now is taken to mean how well you pass as non-autistic (which imo is far to vague to be of any use) and as such is now fairly offensive if you use it that way and so we’ve lost a useful descriptor and gained yet another nonsense.

Theres lots of places you can read about it on line eg https://link.springer.com/referenceworkentry/10.1007/978-1-4419-1698-3_344

gives a brief outline at the beginning of the paper.

Definitely. Any wiring, even though naturally occured , which is not normal and stops certain functions proceed normally, is obviously affecting one's health and can be called disability

The photo I attached explains that the NAS considers high /low functioning terms are now not acceptable to use and are considered offensive in the autism community.
I gave you the example of my own DS - saying that if you looked at him and his achievements you would think of him as ‘high functioning’ but that would be totally incorrect (as explained by the NAS attachment).

He finds it extremely difficult to function (highly) every single day - hence why the terms are not correct.

I’m not sure what you are trying to tell me?

You are quoting work published in 2022, looking at the molecular structure of brain tissue obtained from just 49 deceased autistic people compared to a similar sized control group. The study observes differences in brain tissue but does not make claims as to the causal mechanisms responsible for the differences it observed. (It also uses some pretty contentious language).

The original meaning of high functioning was to do with IQ. The problem is people now use it to mean something else.

i think it is just more widely known by schools, health visitors, parents
much more so than 20 years ago
mainstream TV programmes with autistic people

then parents/adult search for a diagnosis and receive it, because more is known, it is a spectrum
not environmental.

I mean ND people tend to couple up/ have kids with ND people.

My kids are clearly asd but their traits aren't that different to me or their dad.

We also have older relatives that have more obvious ND and needed lifelong care and couldn't live independently.

I do think we recognise more so there is confirmation bias.

I also think we live lives that exacerbate struggles - even tv is faster paced and brightly coloured in a way, the bombardment of images and screens and information. I do think for those of us who are high functioning it can be easier to be overwhelmed or let the mask slip so to speak.

@DrCoconut I really hear what you said at the end. I've recently - as his struggles and challenges have intensified - thought I wish sometimes my own child was NT because I can see how difficult life is for him in this world - set up for people who are not like him ( PDA). It's such a horrible and hurtful thing to even think.

Part of me really wonders how different life could be if society was set up differently ( schooling, work, communication, societal expectations, all this bombardment of sensory stimulation). I think my own son would be so much happier and so less disabled by life. Only he would know that of course and in our lifetime this situation regards how society is structured isn't changing so we'll never know.

( I'm only applying this to my own child and observations regards his own challenges, not all ND people).

yes and also, living that way, there was no time for girly cliques and gossips or hen dos or girls drinks so no one even bothered trying to fit in. Good morals was enough to be left in peace

I think it might be this.

I can remember being extremely uncomfortable and crying a lot as a child - particularly in the nativity which I had to be removed from and at weddings etc.

I remember my parents acting embarrassed and being really angry with me for crying over things. My overriding memories of childhood are being frightened of both my parents and grandparents that I would say or do the wrong thing. So consequently I said nothing and did nothing. I was the same at school.

@CraftyNavySeal you raise a very valid point about what is considered functional. My dad's generation probably didn't need the executive function that my kids do as their lives were simpler. DS has to bring various PE kit items to school on the right day, cookery ingredients, instrument on lesson day, maths equipment, remember passwords and logins for multiple platforms etc. My dad got dressed and went to school.

I don't think autism gets worse with generations.

I'm diagnosed, as is DS. I was hyperlexic he had significant speech delay is an example of differences but he has the right support to thrive whereas even non-verbal or speech delayed autistics back when I was young where segregated and didn't receive any support other than the questionable ABA therapy, many were put into abusive institutions and this is even more so true of my mums generation and my grans generation. These people would not be reproducing. They would be isolated.

Referring back to DS and I, he isn't more autistic than I am. We are both just as autistic but I was just fortunately born with a combination of traits that fall within the triad of impairments that meant that I could still cope with the limited support tools available to me.

Given we no longer institutionalise our high support needs individuals you will see more of them around compared to previous historic generations (and rightly so, the abuse was abhorrent) but our highest support needs individuals with limited speech and developmental delays and who will need significant daily support for the rest of their lives are still unlikely to have children and therefore you aren't likely to see a positive uptick in autism in the way of support needs decreasing each generation whereas individuals with lower support needs who have lived independently and had the opportunity to form relationships are more likely to have children. Those children will either be autistic or they won't, and if they are then they may also be lower support needs or their support needs will be higher than their parent/s.

I agree with the PP that also pointed out the schooling system these days seems a lot more intense, and we're in the midst of a SEN crisis as there is not adequate support for SEN pupils, which leads to oberwhelm, both over and understimulation and is a curriculum that leaves no room for alternative learning styles. The lack of SEN alternative provision means thst perceptually you're once again more likely to encounter higher needs children to autistic parents in a mainstream setting. Their needs are higher in these settings and not having their needs met creates trauma and trauma leads to dysregulation and this can generate behaviour that may make a child appear "more autistic" but actually they're just more traumatised.

Trauma and autism go hand in hand with eachother.

My assessor who assessed me in April this year said that CPTSD rates are high in autistic individuals, and it's especially the case in late diagnosed autistics as you've spent most of your life not knowing what your needs even are to get them met. It's not exclusive to late diagnosed autistics of course, and as an autism advocate for SEN children, reducing trauma is something that I feel extremely passionate about and making sure schools understand.

So I don't think we get more autistic with each generation. I think we understand autism and how it presents and the triggers of dysregulation more now than ever before but there still isn't the right support or intervention structure in place for our young autistics of today.

My dad was obviously autistic with hindsight. I don't remember him well as we lost him when I was small but I have his scrapbook, textbooks about his interests and stories about him that all point to it. He was a precocious and "odd" child and a rather "difficult" adult by all accounts. When I was younger I was a square peg in a round hole, though I did well academically, and at 12 school wanted to refer me to the child development centre as they thought there might be something "wrong". My mum wouldn't engage with the idea as she didn't want me to be stigmatised as "not the full shilling" (got to love the 80s). I've struggled with relationships all my adult life but I mask quite well due to having to. My DC are all either diagnosed or on the pathway to it. I'd say it's obvious it runs in the family and I don't feel labelled or stigmatised but other people's judgement can be very hard to cope with. Especially with my youngest who is likely PDA. I would opt for us all to be NT if I could as it must be so much easier.

Is that your own research or did you just copy and paste it from somewhere without bothering to cite your source?

I dont think the NAS are saying there is no need to define support needs.
They’re saying to describe needs rather than saying they’re high /low functioning.

Sometimes if I have to explain my DS’ autism to someone who clearly doesn’t understand autism, I might say ‘he has what some people used to call high functioning autism’. It means though that they think he’s like Rain Man or he’s savant.

I get that some people have very spiky profiles and I have a friend whose son is similar to yours and he's is very disabled by his autism
But this does ignore people like my son who cant function on any level without 1:1_support and can't communicate with anyone other than on a very basic level I'm not sure what the answer is but to say it's all but a blanket diagnosis of unhelpful and I don't buy in to it s the co morbid disabilities that are the issue because where do you start trying to define the two?