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!

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

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

From the bits I heard today they do look at that from both perspectives, and have data!

Which is why I thought some on FWR might find the series interesting.

An interesting extra possibilitiy is whether what seems to be a growth in older people with dementia are in fact people who were never diagnosed as being autistic but once they are seperated from the support systems that helped them navigate life (ie moved into a care home) they are lost.

There was also mention of women not being diagnosed.

But I did only get bits of this and am hoping to listen in one go if I can find the time.

This is not a thing. There is actually quite a specific set of diagnostic criteria. And if there is any doubt, a diagnosis is not given. I keep seeing misinformed people saying that nobody can agree on what an autism diagnosis is. It’s rubbish. I’m autistic and so are 3 of my 4 children. It’s genetic. And as a previous poster says, I can see all of my autistic relatives going back through my dad’s side of the family.

There has been no ‘widening’ of the diagnostic criteria. What has changed is that people don’t get diagnosed with Asperger’s any more. Or functioning levels. You either meet the criteria for a diagnosis or you do not.

As far as the link with gender dysphoria goes, it would make sense to me that autism could be the reason that some people think they are ‘born in the wrong body’. I have a recollection as a child of wondering whether I was an alien because I just didn’t fit in with my peers. Comments were made, not only about my unusual behaviour but also about the way I walked, stood and generally interacted with the environment.

Whatever the case, I want to see children left alone and their parents need to stop enabling puberty blockers and all this super damaging stuff. There is no such thing as a trans child.

It is a thing. Asperger's has been subsumed into ASD. You never used to get people with autism who could advocate for themselves because by definition, they were too low functioning. The criteria for being disabled by it has changed drastically.

DSM-5 criteria for autismAccording to the DSM-5, the features of ‘autism spectrum disorder’ include:

• criterion A: persistent deficits in reciprocal social communication and social interaction
• criterion B: restricted, repetitive patterns of behaviour, interests or activities
• criterion C: symptoms must be present in the early developmental period
• criterion D: symptoms cause clinically significant impairment in social, occupational, or other important areas of functioning
• criterion E: these disturbances are not better explained by intellectual disability or global developmental delay.

Assessments for ASD, in the cases of myself and all my children took at least 6 hours with 4-6 clinicians involved in every case. It is not a dx that is applied lightly. But it’s reasonable to assume that far more people have autism than was once assumed.

Functioning labels are meaningless because autistic people often have very spiky, uneven profiles. If you read my post it does say that people don’t get diagnosed with Asperger’s anymore. If you read posts from MN about 20 years ago, you’ll see that children diagnosed with AS had significantly differing care needs from NT children which still required statementing (as it was then).

The diagnostic criteria have widened for autism. You do know that the DSM changes? Its diagnostic criteria has widened over multiple editions.

And even where there is no change in the formal criteria of a diagnosis, it's not at all uncommon for there to be a change in application, that's not confined to autism nor controversial. This has to do with changed of practice and perception among practitioners. It's a common issue where there is no objective test or screen, which is the case with autism.

Being autistic or having children who are is entirely irrelevant but I'm not sure why you would assume you are the only one on the board with personal experience of autism anyway.

It's also not established that causes of autism are wholly genetic, and if you are seeing that somewhere it's not a trustworthy source of information.

Autism was first documented in 1943. At this time is was described as a rare, severe condition involving profound language and social impairments. It may well be the case that autism, as understood using this definition, was not as rare as Kanner thought, but it is definitely true that the criteria has broadened a lot since this time. There is no doubt about this - it is evident through versioning history of diagnostic criteria.

It’s generally accepted that autism has a genetic link these days. What makes you an expert then?

I had a dd who was diagnosed 20 years ago and one diagnosed last week. The diagnostic criteria hadn’t changed in either of their reports.

The first documented case in 1943 was a man called Donald Triplett. His language was advanced but unusual. As an adult he went to university, got a degree, and spent his life working as a banker. He drove a car and lived independently. He lived until 89.

I think that if/when an ‘autism gene’ is found, it is likely that it will come to light that there are many people who meet diagnostic criteria who don’t have ‘the gene’. This will then lead to disagreement as to whether (I) there are multiple causes for autism and having ‘the gene’ is just one (ii) autism is a condition that can be screened for genetically and they others who meet the current diagnostic criteria have conditions that share the same presentation of autism, but isn’t autism.

There is lots of push back against exploring genes in relation to autism. There are strong views on both sides.

Asperger’s is still being diagnosed in some countries. My son was given that diagnosis a couple of years back.

I can also see that there are family members with it, that have never been diagnosed. Because it isn’t always intensely disabling, it hasn’t always been considered necessary to give a diagnosis. Whether labeling people who function differently from others (when it is not at a level to be truly disabling) is actually useful, is still something I’m not sure of.

Makes one wonder whether Autism, especially the higher functioning end, is not just a part of the normal human condition requiring no special label at all.

Also makes me wonder whether the Autism is best managed with one to one care (like parent child relationship) as Autism has increased along with increased enrolment of very young children into long day care for five days per week.

I first remember hearing of many children in Eastern Europe Orphanages with the condition and thinking it could be related to a lack of one to one human interaction. (1970 - 1080s)

I think it’s lots of reasons but also because girls have been hugely under diagnosed with autism in the past because of differences in presentation of their autism compared to boys’.

And it’s because today’s world demands ever more sophisticated and numerous social interactions, which means many ND children and adults find they are struggling more prompting diagnosis to be sought.

Take eye contact - it used to be that if you gave good eye contact, you couldn't get a diagnosis. Now that's not the case.

The original autism criteria were based on males. Women often mask better and weren't being picked up tovthe same degree.

Autism runs all through my dad's family but not in my mum's.

I can point to all the people (including me) on my dad's side who I think are on the spectrum, but it was only in the 90s that people started being diagnosed, and they were all children.

The rest of us floated under the radar and managed as best we could.

My dad, for example, worked at sea - this meant he hardly had to spend any time with other people, as he was not at home much and had his own cabin on the ship.

I have zero interest in friends but I know that's wierd so I make an effort with people. But it's an effort - I would much rather have my own cabin!! But I blend in. No one would know. And as a child I was expected to fit in. Nowadays I might have been diagnosed as a child and left to my own devices rather than encouraged to be sociable.

Totally agree. There is a child in my family who clearly has autistic traits, but doesn't score highly enough on the scale, so got no diagnosis.

Thank you for this. My daughter was diagnosed professionally at the age of 10. It was as you describe, a multi-disciplinary assessment that took all day. Looking at those criteria, I would say there are others on both sides of the family who could have been diagnosed but decades ago that would not have happened.

I'll listen to the series with interest.

I see it as an increased willingness to diagnose in the context of a society that is harder for autistic people to navigate.
There used to be smaller schools with only 600 children at secondary, and tiny village schools with 30 or fewer children. Jobs in settings with a handful of staff. An idea of staying in the same job for life. An idea that university was for an elite, and that most people would continue to live with or close to family.
Autistic people throughout history have been described and given names like "fey", "odd", "eccentric".
Life was quieter last century, so hypersensory kids did not have to face a barrage of noise. School uniform was less specific - it would be "blue skirt, white blouse" , not these items from this supplier in this noisy, hard fabric.
Five o-levels used to be normal, now kids are coerced to study nine GCSEs with no agency - an autistic kid in 1980 could spend the day on subjects they had chosen.
And now, with a diagnosis you can get extra time for exams, and other adjustments. So there is intense pressure on parents to get their kids diagnosed whereas in the recent past those same parents would have been shamed for asking for a diagnosis.

I'm sure being in those orphanages had a very damaging effect on young children, but you are teetering on the brink of an earlier theory that children diagnosed with autism had cold, unfeeling mothers. This was utter nonsense, of course, and eventually discredited. As for the idea that it's just part of the human condition and requires no special label, I would disagree. Being the way she is has profoundly affected the course of my daughter's life and left her with chronic anxiety and depression. 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. It's certainly helpful in getting necessary adjustments while in education.

People tend to think that autism is like an A-Z spectrum but in reality, it isn’t.

It’s more like this.

Of course it is part of the human condition. As is downs, MS and a range of conditions. But in the same way we support (for example) people with limited mobility, we don't try to force them through the same physical requirements as someone with full mobility.

A diagnosis hopefully aids in enabling someone with autism to live a fuller life, with some adjustments to enable access.

DSM- 5 was published in 2013. Before that the criteria were different and there were more categories. Here is a paper with the differences in diagnostic criteria in place between your two children’s diagnoses:

https://iris.peabody.vanderbilt.edu/wp-content/uploads/pdf_info_briefs/ASD_Comparison_information_brief.pdf

Functioning categories were related to IQ: high functioning meant normal or above average IQ, low functioning meant those with learning disabilities.

But that is just a collection of linear scales, and none of them are binary ie autistic vs not autistic