‘Interesting’ article on overdiagnosing in Times.

[Soontobe60]

Just putting this here for discussion.
https://www.thetimes.com/article/9f82545c-57f5-4db2-8a47-9a8cc2304243?shareToken=c0f809004b0c59cf1b96f6b6eb6129c3

This statistic is commonly cited which is at huge odds with many of the posters on this site with ND who work. Of course this is a largely MC forum so this might make the difference but Im always struck at almost every second poster on here is ND but works.

That isnt evidence or an argument for it not being genetic!!!

And Genetic doesnt mean 'inherited' something I see getting confused on here a lot

I feel it is genetic but thats not an argument for it.

Fabulous post @SecretMoomin

There's "struggle" and there's "fall apart". When you can't see what you said wrong even after someone explains it to you because you see no logic as to how the rules of "saying the wrong thing" work, and you still can't see the logic when you're 40, you're not experiencing what neurotypicals experience.

I agree with this. My son was only diagnosed with ASD at aged 16 due to a change of consultant.

it was the NHS that first raised the issue of ASD as my son had complex needs eg hypotonia not able to swallow for 2 years and prolonged fits. The NHS went through the ‘list’ eg Downs, muscular dystrophy etc and one consultant landed on ASD. He was retired and the next one spent over a decade prevaricating whilst saying DS has complex neuro development disorder. In the meantime SALT NHS said definitely ASD speak to consultant to confirm diagnosis. Son had severe receptive language impairment and semantic / pragmatic below 1 st percentile.

school blatantly lied and said he was eg average at sports when for example 2 kids helped him into the sack for sack race and all the kids exaggeratedly cheered as he tried to jump in the sack using his arm rotating to propel himself. As the NHS SALT and OT did their own tests and diagnosed severe needs there was this odd lack of consistency between school / paediatrician and the NHS OT and SALT with even Great Ormond Street on on the act saying DS had severe receptive language impairment and needed 1:5 classroom setting. Severe receptive language impairment with pragmatic issues is classic significant ASD.

School said he’s fine ( despite having prolonged fits bowel disorder and an inability to swallow for years plus hypotonia) The consultant preferred school to his own SALT and OT in that regard.

Secondary school had to sort out the mess and place in far more support than in his EHCP and luckily I got the daft headmaster in junior school to at least apply for top up funding. I remember watching DS bouncing up and down/ flapping in an open evening and that daft headmaster deliberately ignoring it - all very very odd.

Fast forward that daft consultant retired and the new one within 10 minutes says ‘you know he’s ASD don’t you - we need an urgent ADOS’ He had an ADOS within weeks.

As an adult he ie very obviously ASD and when it’s like that it’s not ‘hidden’ it’s there to be seen. I wish it was hidden as he is bright and lovely but his life choices and opportunities to work will he limited to sympathetic employers.

I was at primary in the 80s. I can think about fellow classmates and they got by, because they had to, but it must have been a rough ride for them.

The 'naughty' ones who got corporal punishment - potentially ND. The boy some people thought was stupid and got annoyed with in group work - obvious dyslexia (wonder how that affected him?). I remember sitting in the reading group with one not nice girl rolling her eyes and sighing loudly, which I thought was mean.

Kids do find ways to manage themselves but that doesn't mean it was an easy ride for them and didn't impact them negatively for life.

You'd expect my mum to have taught me successfully how to socialise and she was unable to. My dad wasn't the only adult involved in raising me so it's not that I mimicked him with no other input.

And what is the difference between struggle socially and fall apart?

The most profoundly affected autistic people aren't able to post on Mumsnet...

The ACEs and trauma explanation of behaviour reminds me of the refrigerator mother explanation of autism. That was thoroughly debunked. Now we seems to have some professionals who have drunk the cool aid on trauma and forget that there are other potential causes of challenging behaviours.

In my own experience, yes. I’ve met a number of families (both in RL and online) who have autistic children with very high care needs- many cannot speak, still wear nappies despite being primary-school age, some cannot walk. Many find it frustrating to have no answer or explanation for why their child is so severely disabled.

But then this often creates a bit of a division within autistic communities and talk, there are a lot of autistic adults who dislike any talk of it being a disability, favouring ‘ASC’ rather than ASD etc. And I have seen a lot of hate towards ‘mums of autistic children’ from this direction, particularly those who speak of the real challenges of being a fulltime carer, they see it as highly offensive.

Well of course which begs the discussion to be had about what is ASD.

We chatted about this during a meeting at my son's school last week. He has recently gone through a lot of trauma and everyone in the room agreed that they were relieved his ASD and ADHD referral was agreed to and went through before his recent experiences.

"Fall apart" looks like:

• sexual assault at primary school because you don't recognise the threatening behaviour of the boys that the other girls recognised and removed themselves from.
• suicide attempt in year 11.
• having no, zero, friends and no ability to make them.
• having limited ability to do group projects because you cannot interact with people.
• being accused of racism by other kids for mentioning in a class discussion that Black people in the US have historically tended to go to one church and white people another, even though this is a plot point in one of the English set works "To Kill A Mockingbird". Apparently it was "how I said it". I still don't understand what I did wrong.
• being literally incapable of understanding the social interaction aspects of the English Lit set works and hence failing the mocks and being withdrawn from sitting the GCSE.

some schools refuse to see it,
they pride themselves on being able to cope, big up themselves

What is ASD? https://cks.nice.org.uk/topics/autism-in-adults/background-information/definition/

Autism spectrum disorder (ASD) is a lifelong neurodevelopmental condition characterized by persistent difficulties in social interaction and communication, and stereotypic (rigid and repetitive) behaviours, resistance to change or restricted interests [SIGN, 2016; Huang, 2020; NICE, 2021; NCCMH, 2023].

Difficulty with cognitive and behavioural flexibility and emotional regulation difficulties may also be presenting features [Hirota, 2023].

Discussion concluded.

No they’re not. An assessment is multi disciplinary, it does not rely just on the parents say so.

My son masked to a degree at school, school had difficulties with him but lied.

We didn’t just have to rely on them though as part of the assessment was with the paediatrician, part with a psychologist, part with SALT, and we also had a report from OT from an assessment we had earlier to try to help him with his sensory issues.

No credible assessment is based on home alone, none.

Do you have any links for that?

Every autistic person I know has family who are obviously autistic. They may not be diagnosed, but if it walks like a duck and quacks like a duck….

I didn't realise it was that low, in the Netherlands where my family live that percentage is double (45%). Still shockingly low unfortunately. There is a lot of unused potential.

I work in IT and I have had multiple co-workers that I suspect are on the spectrum.

You should be prime minister 🥇

Genetic is different from familial trait. Not many things are directly inherited, it is usually a far more complex interaction of nature and nurture.

https://pubmed.ncbi.nlm.nih.gov/26709141/

tl;dr: twin studies provide strong evidence that autism is genetically inherited.

But I think that statement just goes to show you don't really understand the repetitive an relentless cycles of intrusive thinking that a lot of people with these issues experience. There's normal anxiety, which everyone experiences to some degree at some points, and then there's the all-consuming, shame-riddled, intrusive anxiety some ND people experience.

No the discussion is not concluded!

Descriptors and categories of disorders of this nature have changed over time, changed many times, understanding of the presenting features but also possible causes have changed over time and they will continue to change.

One of the biggest conversations at the moment is the discomfort with ASD incorporating such extreme ends of presenting need, that will continue.

I am sorry you had such a hard time.

Quite a few of your examples show the changes in schools. I did not have to do any group projects and I do not remember having to understand any social aspects in English Lit. I learned the explanations of why people behaved in certain ways.

The only social aspect when I went to school was making or not making friends.