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!

I agree with you.

Just to add, it is one more way in which this whole 'trans' debacle is utterly damaging, abhorrent, and despicable: i.e. not just to women, but also to autism research.

I agree. It is one of the frustrations of the popularity of relying on ‘lived experience experts’ [sic]: one, or maybe a very small number of, articulate and politically active individual(s) presenting their own needs as if they represented everyone. Of course it is easier than actually going to the trouble to ask a broad properly representive sample what their needs are.

I agree. But also, the things you mention are just normal human traits.

None of them are unique to autistic people. Someone who hates social gatherings, enjoys being alone and doesn't have friends might just be very introverted. Anyone can be obsessive about a hobby or hate crowded places. And how often have you heard someone say "People don't like change"? Not liking change could be said to be the norm.

Assume person A and person B are both properly diagnosed as autistic by experts.
The fact that these symptoms are also found, to a less severe degree, in the general population is not relevant. That smacks of the 'everyone is a bit autistic' argument which is insulting to many people.

I am saying that autism is real, disabling, and needs to be taken seriously, BUT it is just not 'one thing' - research will show that what we currently call autism is a collection of many different conditions with different causes.
Research which is made all but impossible by TRA muddying the waters and objecting.

Came across this today. Interview with Gina Rippon about her research/book on Girls/Women with autism and the systemic gender bias in assessment tools. Worth a watch, I think?

https://www.newscientist.com/video/2475916-a-new-picture-of-autism-in-girls-is-emerging-says-gina-rippon/

What could be fascinating is that rather than it revealing male v female presenting autism is that the research may challenge outdated male-models of autism - I suspect there are just as many men/boys who missed a diagnosis due to not conforming to the model/stereotype as it emerged even in the last 10-20 years.

The diagnostic criteria are very precise. Sensory Processing Disorder is a comorbidity, not a criteria for autism. In any case SPD can manifest as hypo or hyper.
Social difficulties doesn't prevent a person from having friends, it makes it difficult. Some autistic people are rigid and obsessive about being courteous and sociable.
Likewise some are fascinated by metaphors and understand them technically but may use them inappropriately.
Lots of autistic people train themselves to fake eye contact and some overdo the eye contact.
Some autistic people have too many hobbies and try to do too much.
The unifying characteristic is the diagnostic criteria which is about social communication, social imagination, and repetitive behaviour/ unusual special interest.

The diagnostic criteria are not at all precise. There is nothing precise about ‘persistent deficits’ or ‘significant impairment’; they are both judgements open to various interpretations. It is perhaps therefore not surprising that what is judged a persistent deficit or a significant impairment has changed over time.

The orginal autism criteria included non verbal or delayed speech. Later aspergers was add and the diagnosis was the same as autism without delayed speech/non verbal. Later still asperger was removed as a seperate diganosis and people could be diagnosised autistic without delayed speech/non verbal.

I'm with the reality side of it being disabling rather than just different.

I've been asked a few times about ADHD and the assessment process by people concerned that they have it and wondering if they should be assessed. My answer to them is to spend some time considering whether the symptoms they have identified have a daily or regular negative impact on their life? If the symptoms are not causing real difficulty or distress in navigating everyday life, or are only very occasional, then I would guess they don't have it. For example, do you find last minute changes to plans just mildly irritating or does it fill you with anger and frustration and throw off the rest of your day?

There are aspects that can make people with autism or ADHD very good at learning / researching stuff in depth or thinking outside the box, and of course there are the very impressive people with real genius who pop up from time to time (like the artist Stephen Wiltshire). But even the very intelligent and talented ADHD/ASD people, however brilliant they are in their chosen field of work, will usually struggle with other stuff most people do with ease.

Oh and someone mentioned collagen earlier - KnottyAuty I think?. Check out the work of Dr Jessica Eccles on linking hypermobility with ADHD and ASD. Really interesting to listen to, I saw her first on an episode of ADHD Chatter and here she is on an NHS podcast

That’s not strictly true, they are now recognising that autistic girls present differently. DISCO diagnostic tool allows for nuance whereas ADOS 2, not so much. That’s why we specifically asked for DISCO for my daughter. Alongside ADOS 2.

The whole point of the DISCO tool was to meet the need for a more flexible, detailed diagnostic tool that captured the full range of autism spectrum conditions—not just the most classic presentations.

NICE Autism Guidelines only officially recommended the use of multidisciplinary diagnostic teams, that could bring in various tools in 2011.

That’s why more girls are being diagnosed. This is a good thing.

Under-diagnosis, especially among girls.

I was born in 1963. I had speech issues, tiptoe walking, a loathing of being touched, inability to manage relationships, obsessive interests, thankfully a high IQ.

My dm labelled me Wednesday's child, my F decided I put it all on to seek attention. That it was affectation, He decided to ridicule me in front of my siblings and humiliate me publicly daily to make me stop. I was 6.

I was seen by a speech therapist at infants school. He agreed that it was affectation.

Thankfully I had a year 6 teacher who helped me get in to grammar school. The teachers there were better and helped me get to university. And from there I was able to become independent.

My F had a sister who was kicked out in her teens, as the 'black sheep'. Her Aunt was disowned by the family because of her behaviour. A female relative from the previous generation was consigned to an institution for being 'wild'. Going back through the parish records, there was someone in every generation struggling with similar issues.

Look closely and it really isn't difficult to spot.

There are lots of reasons given for why the increase eg under diagnosis in past, criteria changes, awareness etc. I’m not sure how you’d rule out a real increase as it’d be hard to measure between decades due to so many variables. I guess people get so defensive at the idea as conspiracy theorists believe it.

Despite people highlighting that people are autistic or they are not, and you can’t be a bit autistic, this shouldn’t be confused with diagnosis being categorical. Autism isn’t a categorical diagnosis, it is dimensional. Many people have varying degrees of the symptom, but there comes a cut off at which they are deemed to be clinically significant and the diagnosis is invoked.

But as that cut-off depends on vague unquantifiable ideas it can, and does, shift.

This, with bells on.

That's fascinating -- do you have a link by any chance?

love the idea that actors are paragons of social interaction - you clearly haven’t met many actors OR many autistic people! Weird buggers the lot of them 😃(Am autistic, know several actors IRL)

There’s a lot of ignorance on this thread and it’s sad to see. I’m as gender critical as they come and am also autistic - please don’t forced-team me with people who trample
over the rights of others just because you can’t see my disability.

And believe me, it’s a disability. I work bloody hard to ‘seem normal’ - doesn’t mean I am.

please don’t forced-team me with people who trample over the rights of others just because you can’t see my disability

It is not the posters on here that are force teaming autism with trans.

Really interesting thread.

Both my dc have been diagnosed with autism, along with one of their cousins (and another is on the pathway). Actually all their cousins (they have 9) have some neurodivergent traits.

DH and I each have 2 siblings and none of us think we’re neurodivergent. We have a few mild traits but nothing diagnosis-worthy.
The only adult in the family who I think might be autistic is FIL, where it’s becoming more noticeable since he retired and there’s slight concern about possible beginnings of dementia.

We have several friends with autistic DC, where the parents have some very mild traits, but the DC are really struggling. It’s hard to understand why this is happening. Is life that much more challenging than in the 90s? Maybe. Has pollution/food additives/micro biome depletion made the difference? I don’t know, but it’s something I wonder about a lot.

For my DC, I wonder if their ‘autism’, is actually due to a dysregulated nervous system. This seems to me to be as close as I can get to the root of their struggles (no idea what’s caused that though!). DC1 is 14 now, and actually seems to be growing out of it. His social skills still aren’t the best, but he has no more meltdowns, and has largely left behind the inflexibility and rigid thinking.

It really frustrates me that autism research is controversial! My DC2 really needs help :(

The fact is the is a recognised level of normal/average social behaviour that most people learn, these social behaviours are classed as the norm and people who are capable of learning and conforming to them are considered nt. Whereas those of us who can't recognise, learn or conform to the social norm whether in dress, language use or just expected behaviour especially in social settings due to the way our brains are wired are considered nd. Now nd like sen is an umbrella term that covers many different conditions each one with its own pattern of grouped behaviours/difficulties.
@LookingForRecommendation whether you intend to or not you are coming across as a goady everyone is a bit autistic offensive twit. Please think about what you are saying about asd because those of us who are autistic and/or have asd family members who struggle everyday are harmed by the sort of nonsense that you appear to be pushing.

I didn't mean to insult anyone, and I certainly wasn't saying 'everyone is a bit autistic'. I don't know how you could have got that impression from my post.

What I don't understand is why you think that these symptoms/experiences are only found "to a less severe degree" in the general population. Someone who has no friends but is not autistic isn't experiencing their lack of friends "to a less severe degree" than someone who is autistic. And how is how much someone dislikes social gatherings measured? What makes you think that some non autistic people couldn't possibly find these situations just as challenging?

But I agree with you that the symptoms seem to point to a lot of different conditions. I've just read this article by Gina Rippon, and autism in girls seems to be so different from autism in boys that it would seem to be a different condition altogether.

https://www.newscientist.com/article/mg26635372-400-a-revolutionary-new-understanding-of-autism-in-girls/

A revolutionary new understanding of autism in girls | New Scientist

Second link is to archive version.

I agree with all of this but would point out that most of this is coming from the loud activist group of self Iding suspiciously high functioning autistics. Those of us with more severe issues and their carers do want the research and the splitting up of the label of asd into different groups that more accurately describe the difficulties that each group has. Someone who can make it through uni, sustain a career and have a family of there own have nothing in common with someone who is non verbal, incontinent and is in a perpetual state of sensory overload have nothing in common with each other yet they get the same diagnosis of asd. Unfortunately noone is listening to the majority and are just doing as the noisy few want, it's infuriating and fundamentally harmful to the majority of autistic people.

Someone who can make it through uni, sustain a career and have a family of there own have nothing in common with someone who is non verbal, incontinent and is in a perpetual state of sensory overload have nothing in common with each other yet they get the same diagnosis of asd.

The activist response to this is ‘those things are not autism, they are comorbid conditions’. Which of course is nonsense - for those individuals all those things are symptoms of one condition.

So many people are being diagnosed as adults - by the time you get to 30+ I think you have a good idea if you have extreme anxiety, never had a friend, suffer insomnia, have suffered melt downs etc etc etc And that this could be related to autism
Not everyone is a teen struggling at school.
For the adults,particularly the older ones autism and adhd were not heard of until recently and many of these make up the numbers of newly diagnosed.