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!

Neuron density and synaptic pruning research is going to be very interesting

www.forbes.com/sites/alisonescalante/2024/10/11/new-autism-research-finds-that-autistic-brains-are-differently-wired/

Some autistic people do fine or even well in scripted situations, such as customer service or acting, but can't engage with others flexibly and struggle with friendships.

But again, this makes no sense. The high level world of acting requires a lot of social skills - to get along and work with large groups of people on set primarily. I feel there’s always some get out clause which makes no sense given the context.

I thought masking was highly stressful - why would somebody want to do it for a living when there are other options?

No… you are still disabled but to different degrees. It’s not a case of you are either low functioning or not disabled.

Personally I think it actually doesn’t help people with what would have been called Asperger’s to not have that differential/levelling because then people do think well you’re functioning and able to live independently so you’re not really autistic - it makes people not ‘believe’ in it.
where as with a more segmented diagnostic labelling, you aren’t being compared to someone who is severely disabled.

your post has just proven this. You can’t point at a severed disability and say well that person with a lesser version is not disabled. People are disabled to differing degrees. If you have paralysis of one leg, you suffer with paralysis (of one leg). If you have full body paralysis, you suffer with paralysis (full body). They are both disabling but not to the same degree.

From what i understand from working in the area it’s both

underdiagnosis. So many undiagnosed but clearly autistic relatives on one side of my family.

and
The other possibility, which I think is certainly a factor, is a widening of diagnostic criteria.

but also demands of everyday life are very different these days. It’s highly likely that less a stimulating socially active world where people could get lost in certain jobs that were routine based, repetitive, highly focussed, low social demand and did quite well

the other issue is that there are more children with learning difficulties which goes hand in hand with autism due to much much better birth outcomes for v prem and struggling babies.

My daughter has PDA and role plays her way through life. It isn't stressful for her - it's what she has done her whole life. I mean, life isnt easy for her but the role playing makes it possible to live outside the house. The therapist who diagnosed her thought that a lot of celebs have PDA.

It is the bringing of one's self into the social situation that is stressful, especially if you don't know who you are or trust that others will like the real you.

But if you take on a personna, you might be able to cope.

This is PDA in particular. My daughter was diagnosed as "role playing as a competent peer" at school. I was told that she put on the school uniform and she was straight into character. Nothing she did came naturally - it was all an act based on copying other students. Teachers and other students found her odd.

Btw the Virginia Wolf book Mrs Dalloway features this sort of character, also the film The Hours, which is based on Mrs D.

I know nothing about the world of acting or this particular young woman, so I can't comment on that. But I do know that it's possible for autistic women to superficially seem normal, because they are aware of expectations to behave in a certain way, without knowing the meanings for why or how to actually connect with people.

Yes yes yes
So I am diagnosed autistic my DC are diagnosed autistic
I thought my dad was autistic too.
So assumed that's where it came from.
However
My mum was diagnosed with dementia and suddenly having barely seen her in 30years she was my responsibility
It was like dealing with my autistic son's when they were younger
The nursing home that now looks after her , describe behaviours just like my autistic DC were.
I've been waiting for some study to come out linking dementia and autism, because I'm convinced they are the same

disclaimer - i work in autism research and a long time ago was qualified to do diagnoses. Here are a few things I can say from the research

Diagnostic criteria have widened a lot in the last 20 years, and are also used inconsistently between different clinics.

autism is pretty strongly heritable but there is no one gene. There are lots of genes with small effects. This is entirely consistent with the idea that autistic traits vary continuously between people - some have a lot of traits (and get a diagnosis), others have a few and others have none. There is no clear-cut dividing line between those who do have autism, just like there is no clear way to categories people by height as ‘normal height’ or ‘very tall’.

there seems to be a movement towards autism as a ‘political identity’, where people can self-ID into the autism community and demand that society changes things to fit their needs. This can be useful but can also be dangerous. In particular, I think there is a danger that the articulate self-ID autism community take resources from autistic people who have high support needs and minimal verbal skills, who often need more but can’t speak up.

brain imaging studies have tried very hard to find a clear brain signature of autism, because that would be very useful for diagnosis. But despite studying 1000s of brain scans with machine learning, they have so far failed. This is probably because autism is caused by lots of different genes and is a mixture of lots of different things. There is too much variability to make a diagnosis from a brain scan.

there is lots more I could write but no time now.

I think many PPs are perhaps talking at cross-purposes: the confusion here seems to be that whilst autism arises as a result of a combination of, or dysfunction of, genes (which ones are still undefined), it is not necessarily ‘inherited’. The genes are, of course, but why they are switched on or off in any individual is not, as yet, understood. Identical twin studies have revealed that where one twin is ASD it is not always the case that the other is too, indicating that it is the interplay between environmental factors unique to the individual and genetic components. Where you have multiple members, or generations, within a family who are ASD, it may actually be that shared environmental factors are at play. They simply do not understand it well enough.

But it is not genetic in the way skin colour or eye colour is - or in the sense of ‘well my dad was autistic so it makes sense my kids are, they must get it from him’.

Crossed posted with @parietal who explains it much better than me!

Masking IS acting. A set of learned behaviours to make other people feel comfortable with the character you're playing.

If you're in a long run of a play, that's super predictable - same place, same clothes, same people, same conversations and moves every single night.

But filming and TV work must take much more, with the unpredictability and changeability of the acting world.

And the networking and business skills acting requires, too.

Scripted behaviours are common among autistic people; we have one friend who conducts social conversations as a roleplay and she'll say 'ok, we've talked about work, this topic, that topic, now ... have you seen any films recently?' like she's running down a tick list. It gives her a structure.

I've seen a family post videos of their daughter whose entire conversation is Dora the Explorer script.

In Scotland the government promotes being trans as a symptom of asd now whilst also claiming that asd is a gender identity (seriously they even have auto gender on the official list of recognised genders)
JK Rowling and Elon Musk ridicule SNP over list of 24 genders

https://www.dailymail.co.uk/news/article-13988217/JK-Rowling-Elon-Musk-ridicule-SNP-releases-lists-24-genders.html?ito=native_share_article-nativemenubutton

Can I add another factor-

Our advanced capitalist society puts a lot of pressure on us to actualise some quite difficult to achieve ideals in an increasingly atomised society. We are told that every success or failure in our lives is down to our personal responsibility.

Might people be more inclined to ask themselves “what is wrong with me?” than in previous generations? Previously contentedly surviving a menial working life (for most men) or a housewife’s life (for most women) was about as much as we expected from life..

This is among all the other factors already mentioned.

But all those areas of struggle, the diagnostic criteria themselves, are continuous variables, not binary ones. Why do you think, as PP stated, it takes 4 to 6 professionals six hours to decide which side of the diagnostic line you fall?

I don't like the whole self id thing .
I waited 3years on NHS waiting list for autism assessment
Not once did I claim to be autistic, while waiting and after diagnosis I still only told close family.
Yet I got accepted in to an autism support group of about 20 Adults ,on line ,which I was happy to be in
Only to find only 5 or 6 had an actual diagnosis,none are currently on the waiting list to be assessed,
yet they all call themselves autistic and hold down jobs and family ,none seem to struggling with anxiety as I do ..like I'm often asking for advice or help ,and none of them struggling with the same things as me .
What I need is a group I can join with autistic people who have a diagnosis,but it doesn't exist, because self id is valid.
As it is I can't relate to anyone in the group at all .
So everyone self id in the group just leaves me feeling more isolated .
And they have strong personalities as well , saying that autism is not a disability and it's a super power ..they get offended when I say autism has ruined my life

I recently saw a regional LBGT lobby group have branched out into ‘neurodiversity training’ and being promoted on the local NHS Facebook page for this. I wonder if, like Mermaids, they will suggest trans as a cure….

there seems to be a movement towards autism as a ‘political identity’, where people can self-ID into the autism community and demand that society changes things to fit their needs. This can be useful but can also be dangerous. In particular, I think there is a danger that the articulate self-ID autism community take resources from autistic people who have high support needs and minimal verbal skills, who often need more but can’t speak up.

There are more dangers than that. One I have seen pushed frequently is that your autism is somehow ‘pure’ and anything you do to change it is ‘evil’. This is then extended to children and their usual developmental needs. For example teaching social expectations - this is something all children must learn but for this group it is tantramont to destroying their autism. And heaven forbid that you have two autistic children with differing needs such that compromises are required!

I'd encourage you to keep exploring, it might exist (but it is such a postcode lottery). I am part of a group that you need to be diagnosed for, or at a minimum have passed initial screening tests and be on the waiting list for the full assessment. Those not diagnosed/on the pathway are not allowed. Self ID has no place. It is so harmful to say autism isn't a disability. I will never understand why people feel the need to label themselves with a condition that is always disabling to some degree, then turn around and say it's not a disability.

I would also look for groups dealing with anxiety rather than autism. You might find you have more in common with a group struggling with the same challenges as you (and may find more people diagnosed with autism too).

Yes.i tried saying something similar,along the lines of ,oh you won't be claiming DLA for your child if it's not a disability.
That didn't go down well
I've not found a single group where it's only people who are diagnosed