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!

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.

There is another way you could have put this: #NoDebate. The same tactic used to shut down discussion around trans.

As shown, the diagnostic criteria involve continuous variables with an arbitrary cut off point. Pointing this out does not mean those beyond that cut off point do not struggle. But shutting down discussion around this is a way to try and protect ‘autism’ as a single unified condition rather than consider the neurodiversity of the whole population and whether it is not more accurate to consider the symptoms of autism as symptoms of many different conditions. And paired with the claim that eg sensory issues are not autism but a completely separate comorbid condition is a denial of the struggles other people have causing them harms.

I do think there needs to be some kind of divide- but I don't think functioning levels or different names for different stereotypical presentations were the right way to do it. Personally I think "low/medium/high support needs" is a decent differentiation, though I'm obviously willing to hear about other options.

The reason the splitting of autism into multiple conditions was abolished is that nobody could actually draw the line between "classic autism" and "Asperger's syndrome." The overlap was just too significant and the anyone within a country mile of the supposed borderline could be diagnosed with either condition depending on the psychiatrist, the setting, or even just one day to the next. That diagnosis, effectively made on the toss of a coin, had profound effects on many people's lives. Those with classic autism often faced social exclusion and lack of job opportunities regardless of their actual ability, and those with Asperger's syndrome struggled to access support and hold down employment as people expected a quirky genius rather than an autistic person with lower support needs. The different diagnoses weren't justified when outside of the more extreme presentations, the two diagnoses could both apply to most of the people in the middle. Unfortunately it seems like instead of fixing the gaps in the system people used to fall through, now a different group of autistic people fall through the gaps instead, and that really does need to be addressed.

I was diagnosed with autism spectrum disorder, though I was told I would have been diagnosed with Asperger's just a few years earlier. I don't fit either box particularly well. I require constant social care to function, can't work full time, have self-injurous meltdowns, go mute, and struggle to maintain my hygiene and nutrition without prompting and assistance. I was also an early talker who spoke in full sentences as soon as I learnt to speak, and I perform well in exams despite my subpar classwork. I'd describe myself as having 'medium support needs; in groups where that terminology is recognised. There have been periods in my life when I had lower support needs, so that descriptor also allows for development and change over time and across different situations.

All this is to say, I think distinctions in diagnosis are a sticky and difficult topic, but are nonetheless necessary. Perhaps by support needs, even perhaps sometimes by relevant symptom; so, support structures can target autistic people with sensory processing issues, or nonverbal autistic people, or autistic people with demand avoidance. It is difficult, but I'm determined to find and advocate for a middle ground that accounts for both those who fell through the cracks of the old "high functioning/low functioning" system and the vast numbers of autistic community who can't voice their needs or opinions the way some of us can. A lot of that comes down to listening to carers, and experts, and autistic adults who fall outside of stereotypical activist spaces.

(I only just realised this isn't in the usual SEN, ND or general chat boards, so I apologise for the extensive ramble. That's one aspect of my own communication difficulties, I fear; the urgent need to over-specify)

@quietautistic
I think distinctions in diagnosis are a sticky and difficult topic, but are nonetheless necessary. Perhaps by support needs, even perhaps sometimes by relevant symptom; so, support structures can target autistic people with sensory processing issues, or nonverbal autistic people, or autistic people with demand avoidance

I agree - more useful labels and distinctions within the current big amorphous blob of 'autism' could be very useful to those directly and indirectly involved. Very difficult to come up with satisfactory discrete categories though.

What I was saying was that I think autism is not just made up of different levels of different symptoms, but it actually is a concatenation or umbrella term of different conditions, which may well be found to have different causes, not all of which will be genetic.
Hiving off "sensory processing disorder" as something 'different but co-morbid' is just the thin edge of the inevitable and welcome wedge.

But not enough research is being done.

Hiving off "sensory processing disorder" as something 'different but co-morbid' is just the thin edge of the inevitable and welcome wedge.

This is the opposite of what I mean, unless someone just has sensory processing disorder and no autistic symptoms.

The old high/low functioning labels were closer to where I think we should be, though the terms themselves are misleading so the categories unhelpful from that score alone. Low functioning autism meant people with autism AND learning disability. Their learning disability is not ‘comorbid’ with their autism nor is their autism ‘comorbid’ with their learning disability. They have a single condition that presents as learning disability and autism. Just as someone else could have another ONE condition that presents with symptoms of sensory processing and symptoms of autism.

Someone mentioned up thread how you can end up collection of diagnoses for certain children - this is an unhelpful siloed approach to neurodevelopmental conditions. You end up, as my DC did, with two sets of professionals in different teams dealing with different aspects of their condition, each of who’s impact impacted on the other but not talking to each other. Or a parent I know who was admonished on an adhd parenting course because what they were asking about was part of their child’s autism and it was an adhd course - the mum thought she was talking about her child.

Interesting, thought-provoking thread.
Some of the arguments around "the increase" in autism/diagnoses and whether or not it's real remind me of the dyslexia denial, back in the 1970s. Also of the rudimentary knowledge and understanding in the 1960s of normal infant development and the lack of interest, research and evidence on the subject. Assumptions and prejudices arose. Dyslexia in the 70s was "an excuse for laziness" and schools did not believe in it. In the 1960s there were psychological and educational theories about children but these weren't backed up by empirical evidence of anatomy, physiology and normal development. No-one had undertaken the research.

Autism is an important human variation. It hasn't been studied and researched as thoroughly as it needs to be, yet, so not enough is understood about the condition.

Sidetrack: have you come across monotropism? Along with the theories about synaptic pruning, I find Monotropism to be a very interesting proposition by way of understanding what autism is.
https://www.bps.org.uk/psychologist/me-and-monotropism-unified-theory-autism

I was reading recently and it seems to be newer scientific consensus that shows a strong link between autism and 'inflammation' in the mother when child is in the womb. It's new enough to not really be fully explained but I haven't been able to stop thinking about the potentially profound implications of this for women.

So hear me out. If it is true that this is now a leading cause of autism and increasing rates in the western world then this is where my head is going...

Should women work at all while pregnant?

What if our busy lives, commuting, mingling with larger communities of people in in certain cultures increases flu like illness, whatever causes pre eclampsia or other causes of inflammation in pregnant women?

What if there is something about western lifestyles, the chemicals, pollution, etc, that trigger this inflammation.

It's a lot of speculation but there was something about it that scared me, the implications for women and I don't know. I had visions of the handmaid's tale about it all.

It's also clear there is a link between older sperm and autism I believe. Which is less game changing for their freedom than women needing to be coddled and stuck in confinement during pregnancy obv.

Sorry if I haven't articulated this well at 4am during a bout of insomnia, it is well meaning

I was curious, when reading this, about what inflammation actually is, so I googled it and most definitions seem to be a version of "your body's response to injury or infection".

With that in mind - what is the risk of injury or infection to a Western working woman? And what is the balance of other risks?

It would depend a great deal on the job, for sure. Someone who sits at a computer all day, perhaps partly from home, is not likely to be injured or infected during the course of their work. But a sedentary lifestyle introduces other risks, which can be harmful to a pregnant woman.

What if she gets the train into the office and mixes with crowds on the commute? More risk of picking up germs, but less risk of serious injury than if she drives a car to work.

And is there reason to think that a Western lifestyle, coinciding with high autism diagnosis numbers, is more likely to induce injury and infection? That seems like a reach to me. Exposure to pollutants and chemicals (especially causing injury and infection) I'd associate more with the developing world, rather than Western countries. I'm also not convinced I (or most people I know) truly lead a busy life, compared to many people around the world today, or historically. We say we do, but compared to what?

Also, not flu like illness. I don't think anyway. It would be caused by infection and also highly linked to obesity. There is a stage of foetal development where if the mother has some condition that causes the release of cytokines at that stage it affects brain development. Hence that link pp shared about neural .. stuff.

I am so tired, why does my brain do this? :)

I can't see on the thread if anyone has mentioned environmental factors leading to an actual increase? I agree there is strong genetic component and that there have always been a cohort with some autistic traits or austistic neurotypes, but I think (from what I've seen) that there is a real quantifiable increase in people who meet diagnostic criteria of austism (even the older criteria) as a disability compared to previous generations or even 20 years ago. I think the increase cannot be explained by just looking at widening criteria or including women in diagnosis, or heightened awareness.
From what I've observed in my own family there's increasingly extreme expressions of "autistic traits" - more rigid, less able to function in every day life, more sensitive, more susceptible, more easily overwhelmed, less able to adapt and learn etc as you go down the generations. I don't think it can be explained by better (more heavily enforced) masking in older generations. There's a thread of autism in my family going back generations but only the current children are actually disabled to the point they can't participate in school, jobs etc. I'm curious about whether there might be contributing factors in gene expression like the impact of forever chemicals, microplastics, sedentary life styles, ultra processed foods, increased maternal stress and so on. I'm not saying these things "cause" autism but I wonder if they could tip the balance for some into a diagnosis. I wonder the same thing about increased rates of mental illness like anxiety and depression and inflammatory conditions like endometriosis, PCOS, Crohns disease etc
TL:DR the same number of people predisposed but more people actually afflicted due to environmental factors?
Note - I'm also not saying here that autism is inherently "bad", rather that some autistic traits are bad in an extreme form.

I'm being a bit lazy with the term western society I think. I worked for children's services for a time in a SEND service looking at data and was curious to find that rates of autism increase SIGNIFICANTLY in deprived areas. And we are not talking kids who are different. These were kids with significant issues requiring special school, it is HARD to get into one of those.

So what is it about deprivation that causes it. Is it living in a city/large town rather than being poor as such? Hence pollution? Is it being poor - so less likely to have a good diet, immune system, etc.

It is really interesting to me that an assumption may be (based on narratives you hear) 'poor parents don't look after their kids well so they develop autism' when in fact it could be 'poor people can't look after themselves well so their babies develop autism'

It was really clear that the people working in this SEND service were not dealing with kids who were a bit different. Let's take the high functional kids out of this equation. There is a clear and exponentially increasing rates of kids with profound nuerodevelopmental needs. It is scary.

And you're right it's not necessarily about leading a busy life. But one prone to infection or injury, or perhaps a diet that means a poor immune system? I have no idea what rates of autism are in Africa. Maybe the kids don't live long enough to find out. We used to stick them in an asylum if they had the audacity to live to adulthood. It's all a rather complicated picture that I fear there isn't an answer to beyond genetic or neural tampering at some point. So best we put some money into taking care of the kids we have somehow severely damaged. I'm also suspicious about forever chemicals and upfs. It's enough to make you want to go live up a mountain alone away from all people. Which I've always longed to do, being autistic 😂

@CheeseChamp exactly, the obvious difficulty in comparing autism rates is that you'd need to be comparing populations who have been screened and assessed for it in the same way. You mentioned rising levels in deprived parts of the UK - I wonder whether assessment rates in that population have also increased in that time?

It doesn't really surprise me that deprivation is associated with more kids having profound SEN, because the genetic component would suggest that their parents will generally have lower earning power. Would you agree?

I think this is a really interesting debate. My DD was also screened for autism on the NHS and found to have traits but not enough for a full diagnosis. It was hours and hours of assessment and talking to me/ school. I have no doubt that a private ‘gun for hire’ psychiatrist would have diagnosed her as having autism on an hour long zoom call. The NHS specialist nurses could thoroughly explain their working out when it came to why this trait was present but not impacting her enough to warrant a lifelong diagnosis.
The comments from nearly everyone I know were variations of ‘are you going to challenge it? Are you going to get a second opinion?’ Well no. Why would I as she’s clearly not autistic.
We are losing the nuances of the condition. Forget what socks feel like, the defining criteria is a deficit or problems in communication or interacting with others. That’s the crux of it. If you don’t have that, you don’t have autism.
There has to be that element of difficulty with social communication.
That’s why I wonder about the increase coinciding with the increase in screen use. That’s for both parent and child. Behavioural problems are also getting much worse, with T.A’s routinely being punched or kicked at primary school.
The trouble is, as a nation, we are stuck somewhere between ‘autism is a superpower’ and ‘what are we going to do about all the autism?’. Studies are showing that it is not just the amount of diagnosis which is increasing but the severity of the symptoms in some children, so more children are being born who have very severe traits, are non verbal, without learning disabilities. Therefore this would suggest it was something environmental as well as genetic rather than just us diagnosing children know who would have been missed 20 years ago.

There could be numerous reasons behind the various clusters of behaviours which will get you an autism diagnosis- at the end of the day it comes down to professional assessment, not a blood test, and it is possible that there are multiple reasons for what we call 'autism'.

I mentioned before that my adopted daughters both have an asd diagnosis, but it might well be the effects of the early neglect they received. Adoption and early trauma experts would undoubtedly diagnose them with some kind of attachment / trauma based condition and say their presentation simply mimics autism, but CAMHS psychologists were happy to diagnose autism and I was delighted to get the diagnoses as it means much more help and understanding is on offer.

But it could be that the girls' birth family has autism anyway. Maybe their difficult backgrounds were due to autism but no one noticed. Maybe they didn't have some of the strengths that can come with autism, like my dad's family seems to have. Maybe instead their tendency to learning disabilities meant that the end result was an inability to care for the children appropriately and so the children had a double whammy - early neglect AND autism. They would have had the autism anyway, but the early neglect is on top.

Re the increase in numbers, something I haven't seen mentioned is the idea that in the old days, people tended to marry locally and the autistic gene was diluted as autistic people married non autistic partners. But with life as it is now, autistic people find each other, and have children together, and so the gene is much more likely to be passed on.

"It was hours and hours of assessment and talking to me/ school. I have no doubt that a private ‘gun for hire’ psychiatrist would have diagnosed her as having autism on an hour long zoom call."

WTAF? Private diagnosis still follow NICE guidelines. They take months, not hours. Months of phone calls, face-to-face assessments etc. Multidisciplinary teams are involved, accounts from teachers, coaches, family members, other adults interacting with the child are all taken into consideration.

Autism cannot and is not diagnosed by 1 psychiatrist. FFS.

Autism cannot and is not diagnosed by 1 psychiatrist.

It certainly can be. Or one paediatrician. It can also be diagnosed in an hour for some children (or, more likely, seconds after they enter the room). It generally takes longer and involves more professionals where the diagnosis is less certain or other conditions are being considered instead. Where it has taken months and months and requires more input from others that is because it is less clear whether or not an autism diagnosis is appropriate. The multidisciplinary teams are trying to decide which side of a rather arbitrary line the diagnosis would fall.

Incidentally, whilst the process may last months and months, the professionals won’t be spending months pouring over a single case. They will still only spend hours on that individual

It can and it is @SmallandSpanish.

Just checking the NICE guidelines “Autism spectrum disorder in under 19s: recognition, referral and diagnosis”

Additional professionals may be involved in diagnosis if the clinician considers it necessary but there is no requirement in order to diagnose. The guidelines do recommend considering if further assessments should be carried out, eg cognitive, speech and language, and gross motor skills, but this is to determine support needs not diagnosis.

you are being unfairly dismissive and disrespectful. I’m sure you get dodgy diagnoses either side of the private/ NHS divide, but taking time and speaking to many people and engaging a multidisciplinary team is recommended, a good thing and is not a sign of them being unsure. It’s due diligence. And parents often come with lots of evidence because they’ve spent years getting feedback/ struggling/ being fobbed off by the NHS.

And btw NICE guidelines are as follows; NICE guideline CG128 recommends that the diagnosis of autism spectrum disorder (ASD) in children and young people under 19 should be conducted by a multidisciplinary team (MDT).

According to the guideline:

“In each area a multidisciplinary group (the autism team) should be set up. The core membership should include a:

• paediatrician and/or child and adolescent psychiatrist
• speech and language therapist
• psychologist with training and experience in working with autistic children and young people.”

This approach ensures a comprehensive assessment, considering various aspects of the individual’s development and behavior.

You can access the full guideline here: NICE Guideline CG128

You need to read further. There is no requirement for a multidisciplinary team in order to diagnose, unless the clinicians thinks it is necessary. For many children they might well do so, but not all:

1.5.5
Include in every autism diagnostic assessment:
detailed questions about parent's or carer's concerns and, if appropriate, the child's or young person's concerns
details of the child's or young person's experiences of home life, education and social care
a developmental history, focusing on developmental and behavioural features consistent with ICD-11 or DSM-5 criteria (consider using an autism-specific tool to gather this information)
assessment (through interaction with and observation of the child or young person) of social and communication skills and behaviours, focusing on features consistent with ICD-11 or DSM-5 criteria (consider using an autism-specific tool to gather this information)
a medical history, including prenatal, perinatal and family history, and past and current health conditions
a physical examination
consideration of the differential diagnosis (see recommendation 1.5.7)
systematic assessment for conditions that may coexist with autism (see recommendation 1.5.15)
development of a profile of the child's or young person's strengths, skills, impairments and needs that can be used to create a needs-based management plan, taking into account family and educational context.
communication of assessment findings to the parent or carer and, if appropriate, the child or young person. [2011, amended 2017]

I would think that access to the NHS has gotten worse between 2015 and 2025!
There's more awareness of endometriosis though.

Not really the same because diabetes can be diagnosed with lab results.

Exactly, it's really important to distinguish between a physical condition that can be definitively be diagnosed using objective testing and something like Autism which is a completely different kettle of fish. The professionals and forms filled in may well give people a false sense of certainty but this is an area of science that just isn't that well understood and is diagnosed using a certain degree of subjectivity. Two assessors can come to two different conclusions despite ostensibly following a similar process.

My first school had under 25 pupils and my secondary around 700 so yes, that part, did happen. No school uniform in the first school, but very strict one at secondary.
I think plenty of small workplaces still exist.