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 this. I was told by my children’s clinicians - after hours of interviews with them where I sometimes had to reframe questions for them - that as I’m a student I would benefit from a formal diagnosis of my own AuDHD. LOL. So I describe myself as informally diagnosed until I decide whether I can afford the £1500 to get a piece of paper. Seeing my kids benefit from medication and with the final stint of a PhD I am now thinking it might actually be worth it as I am really struggling with focus, finishing, etc and had to defer for a term as I was getting so behind.. and the more you panic, the more difficult it is to focus!

I also joined a PhD support group recently, thinking this might help, only to find nearly all of us are ND, and our PhD’s look at motherhood and autism in some way… so it’s a special interest group due to PhDs, that has linked us through our research topics and our ASD/ADHD.

I think I will go and get an assessment now as, frankly, am a little panicky about the link between ASD and Alzheimer's. Am hoping it is a correlational link, not a causal link, and that more research will follow (esp with the apparent benefits for Alzheimers theorised behind GLP1 medications, such as mounjaro)… I am fucking terrified of alzheimers!

This thread has been very useful for reminding me about Kanner/Bettleheim’s crappy refrigerator mother theory though, so am grateful I wondered past, as I need to discuss it in mu chapter on the pathologising of motherhood…

Being different from the norm.

For me I could never do performative feminity expectations. My sensory issues and inability to understand unwritten social rules limited me. Things like hair and make-up, fashion, behaviour. So I had messy hair, spotty skin, no cohesive sense of style, weird behaviour. I had no friends and stuck out like a sore thumb. So I received daily harassment.

Online wasn't much of a different story. I got told I write like a man, so I must just be a man pretending to be a woman for attention. More harassment.

Then I found the explanation trans and it clicked. I wasn't a broken woman, I was a man in a woman's body. That's why I couldn't understand or manage all of these external expectations.

That's the danger for autistic women. I narrowly avoided a lifetime of medicalisation. If we don't know we are autistic, all sorts of inappropriate things can be used to explain our differences. Trans being one of them.

Autism is genetic as autistic people tend to have autistic children. Older parents are significantly more likely to have autistic children and the age of first time parents is rising:

academic.oup.com/ije/article-abstract/43/1/107/736982?redirectedFrom=fulltext

What is the norm? Can you define a normal person?

Of course you can’t, but it is obtuse to pretend you don’t see that Society has very fixed ideas of how males and females in mainstream discourse should look and behave. I wish it were not so, but it just is.

Yes but how many people adhere to them exactly? Out of the people you know, for example?

What is your point? The fact is that feeling different and being unable to conform to such stereotypes can can and often does lead to distress, particularly when it leads to bullying from other members of your sex class. PP was bullied by other girls and I have seen it happen too, with both girls and adult women. Hence it is not easy to be “different” for many people.

My point is that if the stereotype is a hypothetical construct rather than an actual ‘norm’ which applies to the majority of people, then everyone is different aren’t they?

But people don’t stop seeking conformity they just offer different sets of expectations. Just look at how controlling trans ideology is of its adherents, or the ‘Autism Community’ is. ‘Normal people’ are much more varied and generally accepting of variability than these so-called non-conforming groups are.

Unfortunately I can’t access the full report and do see from the abstract/summary that statistically there seems to be a link… however I am part of the local ASD community and apart from a few dads in their early 40’s all the parents were in their 30s when their child/children were born, except for a few in their late 20s. The extract does not define what it means by ‘intellectual disability’ either, which it said was the more significantly prevalent with older parents - is this as would be measured in lQ terms? If so what is the range being alluded to - most of the children in my network all have SENs but do not, I understand due to all of them sitting GCSEs [foundation and higher], have an ID, so I’d be interested to understand the criteria for being included in this study?

Statistics are a blunt instrument - the ones cited here don’t look to other variables that may shape these findings, such as family history or parental diagnoses of autism and/or other ND conditions. For example, the reason the parents in this study came to parenthood later in life may be BECAUSE they are also ND, so relationships/finding a life partner took them longer?

There would need to be a study that looked at parental age of people diagnosed AND which also assessed those parents to ascertain the impact of heritability v parental age? It would also be useful to explore whether there is a significance, where there is a parental history, of the sex of the parent in case, as I think I have seen suggested elsewhere, ASD seems to have a higher incidence where there are [much] older dads.

So, I guess I am saying that the findings here are interesting, but they raise more questions than they seem to answer?

I’m not denying that at all. The two things are not mutually exclusive. Of course trans isn’t the answer. All these subgroups are just as militant in policing their rules as the mainstream. But it doesn’t make it any easier for the autistic person.

I think it is quite likely that ND people come to parenthood later, absolutely.

This is very close to my life experience. As a kid I preferred toy soldiers and guns, climbing trees and riding bikes. Dresses literally freaked me out - still do! I reckon if I had been told by a doc that I could become a boy - maybe between ages 7 - 9 - I would have been very interested. Thankfully not an option on the cards for kids in the 70s. It would have been a huge mistake.
I still tend towards what are considered more traditional male interests. As a teen/young adult I was too weird to be invited into social groups of women and not enough of a "chap" to be fully welcomed into groups of men. I don't really do groups / big social events anyway. Could I have been persuaded in those years that trans would fix my "issues"? No idea, I don't remember feeling like I was in the wrong body but I hated being the odd one out and always on the outside, looking in at others getting on with their lives.
I also write like a man too, apparently. Unless I tell people online I am female almost very single one assumes I am male. I am constantly told how blunt I am, both in writing and face to face. .
Now I am approaching retirement I have sort of found my tribe. I live in a very friendly, down-to-earth village and attend book club and walking group. I also go to an all female craft group (only all female because no man has yet ventured to join). It took me a couple of years to feel part of that group rather than just being on the periphery but I am glad I persevered. I have also acquired a big network of friends and acquaintances locally from shared creative interests. But I do wish I had known about my ADHD/possible autism much earlier rather than feeling that something was missing or broken in my head and being constantly frustrated and disappointed in myself.

If you want more information, look up the 2014 Swedish study. Older parents (late 30s and older) are more likely to have autistic children or other SEN. Maybe due to deterioration in the egg and sperm quality. There are other studies too.

Indeed - I saw an interview with one of the Reform electees last night banging on about being ‘neurodiverse’ [ie and not neurodivergent]. It tickled me because I accidentally used the wrong term myself early on and got clobbered.

As a family we could care less how other people describe themselves yet will get jumped on if our self-description does not fit the current trend. We tend to say we are ‘on the spectrum’ [a no-no, I understand] or ‘are autistic’ [which confuses people who really don’t know what ASD is, esp when co-present with ADHD] and refer to ‘our autism’ [as it is unique in its presentation to each of us, albeit with overlaps/similarities], but refer to ‘having ADHD,’ as it is a condition that is treatable with medication. We don’t use ‘ASC’ as autism, as we understand and experience it, is not a ‘condition’ - but we refuse to police the language that others use to describe themselves.

Like I said ‘older parents’ is doing a lot of heavy lifting - you cannot (I want to embold and underline this) presume anything as to sperm and egg quality on the basis of a statistical correlative study.

The reasons WHY these parents were older is significant and yet ignored - I have now checked the study itself. It does not explore whether the same parents had younger children who are/are not ASD, it does not identify whether the parents are ASD, it does not look at whether they were assisted conceptions, it does not look at socio-economic demographics such as poverty, ethnicity.

As a result, it is meaningless. The point of these studies is that when it suggests older parents are more likely to have ASD children, is to ask WHY that is the case… ie, all the factors I have suggested should be explored. It is the starting point for more research.

The extract does not define what it means by ‘intellectual disability’ either, which it said was the more significantly prevalent with older parents - is this as would be measured in lQ terms?

Intellectual disability is generally called learning disability in the UK and is defined as an IQ two standard deviations below the mean which means an IQ of 70 and includes 2.5% of the population. IQ is less favoured these days so it is a bit more woolly but still generally reflects this definition. IQ scores are age-normalised so remain constant with age. Cognitive decline with old age is not generally included with those considered learning disabled.

Also learning disability and learning difficulty are different things - dyslexia is an example of a learning difficulty not a learning disability.

This is key.
It is highly debatable whether what we currently call "autism" or "ASD" is one thing.
It is a collection of symptoms. Which may have many underlying causes.
There are cases where it is very clearly very genetic.
There are also cases where a person is the only one in their extended family who is autistic - the autism 'came out of nowhere'.

It needs a lot more research, but I expect eventually that it will be widely recognised as several distinct conditions.

I would also not be surprised if there is huge pushback against any research into environmental factors. We live in a toxic soup of chemicals, in our air, water, and food. No-one wants to do anything about this, so there is no research.

Genetics does not rule out ‘coming out of nowhere - de novo mutations are definitely a thing.

In terms of research, like trans, autism has become a very toxic area for researchers. Ironically, given the push for trans by autism activists and the sterility resulting from that, research involving genetics gets labelled ‘eugenics’. Any attempt to break down autism into groups with particular characteristics (eg profound autism) is fiercely resisted. Research into causes are condemned as not wanting people with autism to exist, ditto therapies. ‘Nothing about us without us’ is used as an excuse for specific activist groups to control the research agenda…

Having a genetic link that means that you are more likely to have autism than the general population is the likely situation here. That doesn’t mean anything like as simple as one gene that ‘gives’ you autism. Hardly anything genetic is caused by one gene that is either present or not. It will be a combination of genetic traits that is passed on. You may have those genes and not have autism.

its much more complicated

Yes, everyone is different. Everyone is an individual. But not everyone is so different they get bullied for their differences. Not everyone experiences ostracisation for their differences. Not everyone is disabled by their differences. There's normal variation, and then there's conditions that seriously impact your life. Autism needs to have significant impairments to be diagnosed, it's not just people having their own personalities.

Autism needs to have significant impairments to be diagnosed

Yet many autistic groups would say it is a difference not a disability.

They're talking nonsense and can safely be disregarded. Thankfully my autism group observes reality.

In such a climate, the research may have to wait several decades.

I am convinced autism is not one thing.
It is not even about how profound or disabling it can be versus the 'Aspergers' type. It is about the very many different symptoms.

e.g. take two people:
A: a person with severe sensory issues, affecting clothing, food, smells, can't be in noisy places, affected by lights, etc., and also hates social gatherings, and is obsessive about their hobby, BUT they are flexible with plans, understand metaphorical speech, make eye contact, and have a few close friends.

B: a person who needs rigid plans, struggles with change, doesn't understand metaphorical speech, has no friends, doesn't understand people, never makes eye contact, needs to follow routines and rules, BUT has no sensory issues, doesn't mind crowded places, has a wide variety of hobbies and interests.

How can anyone say these are the same condition?