The Autism Curve

[IwantToRetire]

What do the data showing a steep rise in autism diagnoses reveal - and hide?

A 20-year study in the UK showed an astonishing eightfold rise in new autism diagnoses on an exponential curve.

We hear from the study’s author Ginny Russell and ask how the numbers compare in other parts of the world.

And Professor Joshua Stott explains how a surprising discovery at a dementia clinic led him to calculate that that enormous rise in diagnoses may still undercount the country’s autistic population by as much as 1.2 million.

https://www.bbc.co.uk/sounds/play/m002bszl

This comes up on so many threads whether in relation to children and school, or children and gender identity, and ourselves, that I thought I would post a link.

I heard part of the first episode broadcast today and it seemed very much looking at facts, or rather at what can we say is a fact.

ie is the growth in diagnosis of autism because there is a real increase, or because of past failures to diagnose.

So not sure where it will end up, or even have a conclusion.

On radio 4 at 13:45 each week day this week or all episodes on iPlayer.

And if of course by the end strange BBC type conclusions are being drawn, just as well to have mumsnetters on the case to write in and put them right!

Both are allegedly brain differences, or subsets of brain types, with very little concrete evidence for this.

I was reading about a study that did fMRI on children with a range of conditions including autism, dyslexia, learning disability etc. Interestingly they did find brain differences and those differences fell into distinct groupings BUT those groups did not correlate with the diagnosed conditions.

It's interesting to me that under Criterion E, they exclude disturbances that could be better explained by intellectual disability or global developmental delay, but not those that could be explained by maladaptive responses to dealing with trauma.
I'm not knowledgeable about autism, but my DH and my mum both suspect that they themselves have it, as they fit so many of the criteria. The reason they've never pursued a diagnosis is because the waiting lists are so long mum will probably be dead before she got seen they both feel that their symptoms could equally be explained by trauma in their early lives and strategies they developed for coping with that. Similarly, I fit many of the criteria, and have explored in CBT that those elements could be learned behaviours that I learned from my mum.
As I say, I'm not knowledgeable enough to claim an opinion on whether it's over/underdiagnosed, but it must be a difficult thing for diagnosticians to weed out all the potentially confounding factors.

Then I read a study of fMRI done on dead fish…

https://www.scientificamerican.com/blog/scicurious-brain/ignobel-prize-in-neuroscience-the-dead-salmon-study/

Massive underdiagnosis.

Sex: Until very recently experts were confidently stating that autism really only affected boys and men. Intellectual arrogance is a powerful thing. That's 51% of the planet ignored, right there.

Ignorance and fear: Autistic people used to be locked away, chained up, physically abused to control their behaviour, labelled as retards, village idiot, changeling child, witch. I imagine awful things are still happening today, yes, but professionals in many fields are becoming more informed and enlightened. They just know more and better and they're hopefully still developing.

Education: We can now read about it online, watch videos by autistic people talking about what their life is like (Toren Wolfe is a wonderful Instagram to follow) and understand more about them. Anyone can see these now - and see themselves, their children, their parent, grandparent etc, and seek answers.

My mother's cousin who was labelled a peculiar genius as a child in the 40s and fifties had just been diagnosed with dispraxia before she died - and listening to Mum's memories of her, I'm convinced today she'd be recognised as autistic.

But having said that, we know it's genetic, so might it be that autistic people are simply today finding more opportunity and confidence to meet and connect with others, feel less isolated, find partners who understand them because they share that experience, form relationships, and start families?

So might it literally be on the increase?

And is that necessarily a negative? An issue?

Many of those who were previously locked up are those who are still locked up: they are in secure school buildings or at home with doors and windows locked and if lucky access to a secure garden, and sometimes in secure mental facilities. Sometimes they are in a larger secure area like a residential facility or college where there is more freedom but still ultimately secure. When they leave these spaces it is with a high level of care so they cannot elope. There doesn’t seem to be any disaggregated data to show whether this group is increasing or not.

The biggest increase in diagnosis are those with jobs, careers, families, etc. It is interesting that some health boards are removing diagnostic services because it is not a mental health condition, there is no treatment provided, but rather it is just a variant of the human condition.

See I'm caught up with this in that my brother is trans.

BUT my uncle is currently struggling. Long history here but he has found himself living alone and isn't coping.

My dad's dad fits a similar profile.

None of them are diagnosed. My parents think my uncle will eventually need a diagnosis and won't get a choice in the matter when his inheritance runs out, as he won't be able to survive financially without one as he isn't going to be able to get a job.

But it's clear as day in all three of them.

The problem here is an overlap between autism and trans and I think this will become more apparent as time goes on.

There's other stuff I can point to in the history.

My grandfather was made aware of the suspicion of autism in my uncle when I was a child, by my dad (it's his half brother and my dad is much older than his brother) in the late 80s but nothing came of it because it was stunned as an idea.

Other things have happened since. My parents actively resisted seeking a diagnosis of ADHD for my brother themselves.

Then there's my grandfather himself - stuff became particularly apparent about his struggles when he died but my dad would never have suggested it to his father because of his attitude.

So that's three generations where there's been a clear problem but an active resistance to diagnosis. Not that they don't meet criteria but an active resistance even though there's glaring obvious signs because of stigma and ignorance.

Looking further back with the family history there's signs it probably goes back further too.

So I'm cautious about writing it off as a fad.

I fear it'll be transgender all over again.

Jesus fucking Christ!

Im not writing it off as a fad. I also think transgender feelings (or dysphoria) has always ‘existed’, just in much much smaller numbers than we see now. I don’t really believe that somebody who has a successful career, relationship, drives, friends etc can be ‘disabled’ in any meaningful way through neurodiversity - I think one day we will look back and realise how this ever expanding umbrella and ‘you’re disabled if you identify as disabled, even if it doesn’t impede a normal life whatsoever’ has actually defied all kind of common sense or reason.

I think it’ll take longer for the penny to drop on MN but I think it will drop eventually. I also think a lot of the SEMH issues among teens will be found not to be neurodiversity at all, but how they will undiagnose (detransition) themselves I have no idea

My problem is that I suspect that under diagnosis of autism probably has been the driving factor for transgenderism.

If correctly diagnosised would so many children and young people (and their families) fallen into the trans lunacy? Probably not.

I'm gender critical through and through but this is absolute bullshit

How do you explain the fact so many have a dual diagnosis?

I think the mental health issues among people today are far too broad, complicated, intertwined and nebulous to say ‘oh they’re all caused by autism’. 1 condition. I don’t even think most of these people would fit into a neat mental health box like that - no 2 people are ever the same.

We need to go back to basics and stop trying to desperately come up with a label or umbrella diagnosis for these people. There is absolutely no evidence that a non verbal 5 year old has the same condition as Bella Ramsey - none whatsoever. Yet the diagnosis is the same because everything is neatly filed under ‘autism’.

Maybe your relatives were anxious. Maybe they had OCD. Maybe they had what was called Asperger’s. Maybe, as we know, personality is very hereditary and they just fell towards the extreme end of the normal spectrum. It’s basically impossible to say.

Saying everything is autism because it differs from a hypothetical, highly NT person (who doesn’t really exist) isn’t helping anyone.

That’s fine; we will have to wait and see what transpires in 20 years. Perhaps we can revisit the thread then!

💯

Why it assumed that those who are nonverbal have the true manifestation of autism? 11 children were studied in the 1940s by Kanner. None of them were nonverbal. They were withdrawn and had speech abnormalities.

under diagnosed especially female autism with women camouflaging

Because the autism charities actively pushed transgenderism rather than understanding autism and how that made people vulnerable. The pathway for a lot of kids was to assume gender identity issues meant trans before proper exploration of the autism issue. Kids have been swept up into CAHMS and got seen and taken more seriously for gender questioning than they did for autism. There's support for trans in a way there isn't for autism - the LGBT school groups etc. The autism diagnosis usually is after that and of course this has affected how autism charities view the whole thing.

Hannah Barnes talks about how the Tavistock was given puberty blockers after just four appointments even for kids with complex issues. That's bonkers. No one in positions of power was going 'er we should be exploring this rather than medicalising you for being trans'. Cos they were irresponsible.

And the fact the way trans was presented as a 'quick fix' compared to autism which doesn't have 'a cure' or 'treatment' also makes it somewhat appealing and problematic.

It will all implode at some point and if we do see a big medical scandal investigation we will see autism charities sucked into that as a result.

Nope, pretty damn sure it's autism. Definitely not OCD.

But what is autism? In the same way we ask what living as a woman truly means - what is autism? It seems to have so many nebulous definitions, it’s ungraspable. Is there a definition, broadly accepted, anywhere?

My children are adults and as children were not deprived of 1 2 1 care as I didn't work for their early years. They had plenty of social opportunities too, but being autistic, they both struggled with this and still do.
It is genetic. I was undiagnosed and really struggled as a child with school, refusing to go in etc
It is true that lack of care can affect a child in ways that look similar to Autism, but it doesn't cause Autism.

Autistic people experience the world differently and overwhelmingly, because of how our brains interpret and perceive literally everything, it's hardwired into our brains.

But Bella Ramsey is autistic and has managed a high profile acting career involving a lot of social contact? I’m not trying to be obstructive but some of this doesn’t add up.

I come from a family with autism on my dad's side (I posted about it on the first page of this thread) and I believe I would get a diagnosis.

But what I wanted to mention here are my two adopted daughters, who are both adults now.

Both were severely neglected as babies/toddlers. Both were assumed to be suffering from "attachment disorder" as children, growing up with all manner of difficulties and challenging behaviours. Both had therapy for this. And some things got better but others stayed remarkably stuck.

My younger daughter was diagnosed with autism with PDA when she was 10. It made absolute sense, especially the PDA part.

Her sister was diagnosed years later when she was 15.

They were also both diagnosed with adhd. Both were assessed for foetal alcohol syndrome, but not diagnosed. One has a mld. They both have a genetic deletion.

So, anyway, a couple of thoughts:

They were getting diagnosed with absolutely everything (they only weren't diagnosed with fasd because there was no evidence that birth mother drank in the files). It didn't matter who we saw - they all diagnosed within their particular specialism, so I could never be sure if they were seeing the bigger picture. And they all diagnose on behaviours, answers to questionnaires. If you have a range of unusual behaviours, it's easy to collect diagnoses.

Autistic characteristics are very similar to other conditions, particularly early neglect. There was a huge battle in the adoption world about autism versus attachment, with some therapists believing that none of these kids had autism, it was all attachment. The CAMHS therapists who diagnosed asd in my girls both understood attachment but deduced that autism was a better fit. But adoption therapists all diagnosed attachment difficulties.

An autism diagnosis brings you practical help and understanding is ways which attachment disorder and fasd in particular don't. You can get a place in an asd school or unit for asd for example - otherwise it will probably be a behavioural unit or even the PRU.

There is also a separate theory that adopted children may come from families with undiagnosed autism, so there may be a genetic element after all.

So it's all complicated.

You have to struggle a lot in many areas to get an Autism diagnosis, that puts you on the scale. All autistic people have to meet certain criteria to get a diagnosis, but there may be slight differences between them, hence the scale.
The scale is for people already diagnosed.
I don't think you realise the extent of social difficulties and extreme sensory issues autistic people have, if you believe everyone is a little autistic.

But you don't know how much support she has needed to get there. Also acting does suit some Autistic people as it's scripted.

When you've met an autistic person, you've met AN autistic person. 'But Bella Ramsey can ...' arguments are pointless.

Some autistic people role play as a coping strategy. It is easier for them to pretend to be someone else than themselves. This is also where being trans might come in. PDA is part of the autistic spectrum and role playing /copying others is a feature of it.