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!

Also ,I don't understand self id , because
The amount of information I had to give to my assessors ,and information from my doctor and two relatives,and so many forms to fill in .
How can someone think they know better than an assessor ,who's job it is to to assess.
That's like thinking you don't need a doctor to diagnose you with diabetes or ms , because you think you know better .
It's weird

This articulates my fear too with the ND movement and it absolutely is a movement.

I also think both trans and ND groups are keen to overstate the scientific certainty that exists around the issues that they advocate for. They are absolutely desperate to offer people false certainty and vulnerable people are unsurprisingly drawn to this. When you point out that actually our understanding of autism is rudimentary, is changing all the time and that it may well be simply an umbrella term then you are automatically labelled as ableist in the same way that TRAs want to shut down all discussion by calling any detractors transphobic. Both movements play on identity politics, give people a sense of belonging and seek to make sure that those associated with their movements get additional rights. Both movements also are resistant to any kind of scrutiny or questioning.

I remember seeing a pleading apology on SM from a netizen who had developed a large following for her autism blog, developed following her self ID as autistic. She had gone on to get an autism assessment and got a diagnosis of ADHD instead (which she totally accepted as correct). No doubt she switched to writing an ADHD blog thereafter.

I dunno about this analogy. Diabetes is tested with a blood test. There's no biomarkers tested for autism: there's a series of behavioural criteria and if you meet enough of the criteria you can get diagnosed. All those forms are basically to show to the doctors whether you really do tick the boxes. But probably most people who know ahead of time what autism means and how it's diagnosed would know whether they were autistic or not. The criteria is public knowledge.

I am seeing so many kids being diagnosed with autism and as a result, it's suddenly obvious that their parents are also autistic but haven't been diasgnosed.

I don't think it's increasing at all.

So although autism does have a genetic link it really isn't as simple as having a "autism" gene.

There are many genes that are linked with autism and I suspect that there are also epigenetic factors too ( ie genetic expressions that get switched on or off in response to certain environmental factors)

In my view the increase in diagnosis is because of the following:

There are diagnoses now of people that can kind of function ok in everyday life but struggle to do so.

I've worked with a lot of autistic teens. Looking back over the decades ( I'm 60 now) I can clearly identify people I was with in both primary and secondary school that I think would be likely to get an autism diagnosis if they were children today. Back then, sadly I just thought of them as rather "odd". They had a range of abilities and could manage the academics of mainstream education but struggled socially.

I also look back at students I taught early in my career whom I now think might get an autism diagnosis. I had no real training in special needs when I started teaching and didn't recognise things in the same way as when my career developed.

The second thing I think might be a factor is the greater number of infants that are surviving premature birth. Prematurity is a known risk factor for an increased probability of neurodiversity. Babies are surviving at earlier stages and in far greater numbers than when I was young. I wonder if this can be a factor that "trips the epigenetic switch".

Yes ,but I saw three assessors all trained to look at the information I gave and tested me and talked to me and all had to agree I had autism.
So trained professionals decided I had autism,not some random on the street .
Probably the diabetes and ms were not a good comparison.
That's all I was trying to say , probably didn't explain myself well ,sorry

I think there was a ‘golden moment’ for autism a few years ago where autistic individuals/people with autism (yes some do prefer person-first language) started to be listened to and a greater understanding of autism developed from that. Things like a greater understanding of sensory issues which had previously been rather sidelined, or that the abilities of many autistic children are not linked to their verbal abilities (both ways). But sadly I think that moment has passed and it is now driven by activists.

When was the magical time that all these things were true?

I was born in the late 60s so was at school in the 70s and 80s. I went to a an average suburban infant school with probably 200 children, a middle school with about the same number and a bog standard urban secondary school with over 1000 pupils from a mix of affluent and deprived backgrounds. We were all able to sit and listen to the teachers without assaulting them or each other. School uniform was as strict as today (a friend got sent home because she was wearing a white blouse instead of the regulation white shirt) and there were plenty of nylon and man made fabrics about. 6 - 8 or more O levels or GCSEs was the norm and we had to hand write everything and go to a library and find the right books for information instead of a 2 minute google search then and cut and paste.

All neurological conditions are hard to diagnose, by their nature. It's easy to xray a broken bone and say yep that's a broken bone.
The fact that the professionals are thorough is a good thing, it took a year and 4 professionals for one of my children as they didn't want to get it wrong, but they were absolutely clear that they are both autistic. it's just the evidence is more time consuming to gather.
I think people have a voice now online that they never used to have, so autistic people are now more of a target and more visible than they used to be.
I wouldn't have been able to say any of this face to face, I need time to process what people say, and can't think of any answers while I am feeling overwhelmed and someone is looking at me.
There is a lot more I could say but this is draining enough.

@Gasp0deTheW0nderD0g "There are pros and cons of having a label, but one benefit is that it signals that medical professionals believe there is a problem and the person with autism is not just being difficult or odd."
What happens to people who are odd but only meet four of the five criteria?
What if you become frightened in novel situations and behave in a way that is very difficult, but, again, don't reach diagnostic severity in all 5 criteria?
I worry that diagnosis has become a ticket to being treated well. And we're actually (society wide) harsher and less patient that ever with neurotypical people when they're just odd, or just being difficult.

And girls like me (also born in the 60s) were masking like mad whereas nowadays it is socially acceptable to be different.

It still isn’t socially acceptable to be different. And online autism groups are about as conformist as it is possible to be; try going into an online autism group and saying that you ‘have autism’ or are a ‘person with autism’.

Or, even worse, saying it is impossible to change sex.

That's fascinating.

OK, I would say that autism is better understood and there are more resources to help parents understand.

My mother had no clue what to do with me and my odd ways, particularly around food. I used to chew a piece of meat for hours as she made me clear my plate and wouldn't make any allowances for my sensory issues. Apparently meal times took literally hours.

My daughters on the other hand benefited hugely from me knowing what was going on and adjusting things. My younger daughter couldn't cope with surprises for example so we didn't buy her random presents at Xmas. My mum would have carried on regardless.

And she went to a specialist speech and language school. Meanwhile I was a complete bookworm as it was a socially acceptable way of spending time away from other people, but otherwise I had no support with social skills at all.

Just scrolling through this while on a tea break...so much to unpack...thank you for sharing this programme, will try to catch up on Iplayer.

I'm not an expert by any means, I just have my own perspective from nearly 6 decades living with ADHD (diagnosed last year) and probably autism (awaiting assessment after psychiatrist who diagnosed the ADHD said I had autistic traits too)..

Explosion in diagnosis is mainly due to greater awareness of public through social media etc and greater awareness of medical profession that quite a few people (mainly women) got overlooked until now despite asking for help with anxiety etc, Widening of criteria? - maybe - I'll have to give it a listen. Some people want to be "neurospicy" because it's seen as cute or cool or creative thanks to TikTok, these mainly self-ID.

Can ASD/ADHD people do well in life? Yes, if they do not have significant learning and other difficulties. But they often have to mask a great deal and this eventually catches up with them. When I had a high pressure professional job it was a huge effort to get to work on time in clean clothes, manage my diary and work, act relatively normal ie no stimming or unfiltered comments. I used to go in on a Saturday to catch up when no-one else was in and then sleep for hours the rest of weekend because I was just so exhausted trying to do all the work and to hide myself away under a professional layer of behaviour. I also left school early (went back just to sit exams) and quit several jobs because I couldn't handle the stress. ADHD (and possibly ASD) hasn't ruined my life but by goodness it makes it bloody hard sometimes.

With regards to groups, I hear you. I haven't tried to join any specifically for ADHD but I had the misfortune to witness a guy who claimed to have ADHD have a big strop in a FB chat group for an exercise course. Said he couldn't access the course because it wasn't set up for ND people, was abusive to anyone who made sensible suggestions (along the lines of shut up I don't want to hear from any NTs as you have no idea) and demanded a separate ND chat area moderated by him. I was like, erm, no thanks and said why eg that he was too aggressive and I didn't want to miss out on advice and support from the whole community. Since then I have a complete "nope" to joining anything specific as I wouldn't want to deal with that level of bad temper and entitlement again.

I don't expect big adjustments from others, just things like "I'm so sorry, I have ADHD, please could you slow down so I can take a few notes otherwise I will forget everything you said as soon as I walk out of the room?" I just wanted a diagnosis to understand myself a bit better, to be able to work more effectively and feel more confident dealing with other people and organisations like NHS etc..

This is such an interesting discussion.

To pick up on what one or two PPs have mentioned about ageing parents being one possible factor in the rise, I would query whether there actually are more children born to older parents nowadays. Couples used to keep going till menopause, so a typical family would have kids born to parents in their forties. Nowadays we start later, but we probably finish a bit earlier too. I guess there was an in-between stage, when family planning and reliable contraception became a thing, but couples still started families at a young age, when an older mother might have been more unusual, but historically it's been very normal. Obviously those children might have been more likely to have (what we would now call) autistic traits - I doubt there would be any kind of data on that, though, so we'll probably never know.

Please let's try to avoid the refridgerator mother theory!
Yes poor parenting and trauma can cause similar symptoms but they aren't the only cause.

Maybe I'm wrong.

My random theory is that there will be some issue found with the formation or structure of collagen or other body tissue building block. I think the difference interferes with the ears somehow (lots of autists had glue ear as tots) which in turn messes with the early development. This might also explain the hypermobility/motor issues and also the difference in brain connections formed in response to sensory input. I'd love someone to research this but I doubt they ever will as there is no money in it! But Michael Merzenich (scientist who proved brain plasticity) has a fantastic TED talk. Quite old now but he goes through how the brain's early development and specialisation for language works. Fascinating!

And we haven’t even mentioned gut bacteria yet….

No. Don't.

That is a bit rubbish really because what is good about an autism social group, or any peer support group really, is that you have people having/had similar experiences to you. I hope you can find your tribe elsewhere. How about finding a shared interest instead of "autism"? Board games, model train club, special interest volunteering - probably more sustainable than just having a diagnosis in common? I am OK with self ID for folks who are on the waiting lists or trying to get on one, but that sounds a bit rubbish if there are people crashing in who have no intention of getting a formal diagnosis. Sounds tricky.

Different from what?