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!

Is this really about autism awareness or just gentler parenting?

I was also made to sit to finish my plate for hours and had problems chewing meat. I also had a bookworm phase. AFAIK I'm not autistic and while I do have some of the social awkwardness traits, I don't have any sensory issues. Parents these days are just more accepting of their children's foibles, diagnosis or not.

"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."

There might be anecdotal data. I know that I met some girls when I was at school who were very old fashioned and I put that down to having older parents (so exposed to older viewpoints, etc.) so could there have been a belief that the children of older parents were 'different' and could some of this have been autism?

This is why you can't diagnose autism from a few anecdotes!

Autism runs right through my dad's family. I am like my dad. I don't like being with other people. I find friendships totally bewildering - I like going to the cinema on my own, I hate parties, weddings etc. I couldn't cope with dressing up as a child. I have severe sensory issues. Facial blindness. I take things literally. I dont get jokes. And so on and so on. I didn't realise I could be autistic until my daughters were diagnosed and I started looking into it.

You can say I'm not autistic if you like. But the point of my earlier post was not to convince anyone I'm autistic. It was to demonstrate that mothers in the 60s when I was a child had little info about neuro diversity and I in the 2000s had plenty.

I was curious exactly how strong the association is between parental age and autism, and good old Google brings up a lot of varying studies. One says parents in their mid-40s are 5 to 10% more likely than a couple aged 20 to have an autistic child. That's an effect you would barely notice in everyday life. Other studies suggest more of an effect - but they all have different parameters, e.g. one looks at fathers aged over 55, which is going to be a tiny percentage. Also, interestingly, some studies suggest that younger women are more likely to have an autistic child than older women! I'm not an expert here, but the picture seems very mixed.

I would also go back to a point I made earlier in this thread, which is that I don't think parental age has increased. First-time parental age, absolutely. We start later. But we finish sooner. Historically, women kept bearing children till menopause, and it was quite typical to do so. I would guess if you went back in time 150 years, you'd have more chance of meeting a pregnant woman aged 45 than you would nowadays. (Would be fascinated if anyone has data on this either way).

Yes, but my point is that parenting has changed regardless of awareness of neurodiversity. The change in parenting has happened to neurotypical children too.

" I would guess if you went back in time 150 years, you'd have more chance of meeting a pregnant woman aged 45 than you would nowadays. (Would be fascinated if anyone has data on this either way)."

Yes. I knew a family friend who'd be in his 60s now. He said he was always grateful to his mother for being born because he said that 'now' (now would have been early 90s I think) a mother in her forties might well have an abortion. So he definitely considered older mothers to have been more common in the past than in the 90s. Whether they are more or less common now, I'm not so sure.

No, you need to scroll up. You are misunderstanding or misquoting out of context from the section in the guidelines that describes what the Autism Team should do when making a diagnosis. The words Autism Team are used throughout the guidelines and it states

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

The only time it refers to individuals working independently is later on when it says:

1.3.2
Refer first to a paediatrician or paediatric neurologist (who can refer to the autism team if necessary) children and young people:

• older than 3 years with regression in language
• of any age with regression in motor skills. [2011]

The point of this is for other specialists to check if there are any other causes for the regressions - not to diagnose Autism. If a an autism diagnosis is also required, they will be refered back to the Autism Team.

Anyway, we are digressing. The point is that your massively disrespectful and sweeping statement that private diagnosis' are a scam by 'guns for hire' is completely false.

Perhaps you're confused because your daughter was triaged by 'nurses' and didn't show enough traits in the 'screening' to go through the complete diagnostic process so you are unaware of the many experts that are involved at the next stage.

You seem to think it's in the private doctor's interest to diagnose. But NHS doctors have the opposite bias. It's in the interest of the NHS not to diagnose - because the diagnosis will likely lead to more expense, which they are loathed to incur.

Where does that leave the kids?

At no point does it say multiple professionals MUST be involved in diagnosis, a team is required so they CAN be if required.

I never said private diagnoses were a scam or ‘guns for hire’. We do not have a private diagnosis. I have said that a single psychiatrist or paediatrician can diagnose autism.

My DC has never been triaged by a nurse.

I was thinking about it the other day, and I think there are a few factors behind the increase.

ND identity movement and the increase of self diagnosis. It is much more available explanation of distress or difficulties at present due to social media exposure, cultural narratives, workplaces, schools. I expect the assessment process will have to be dialled down eventually and made much shorter as we will not be able to justify spending so much on conditions which can be self certified. Question is what impact will it have on those particularily disabled.

Widening of diagnostic criteria - over time on both DSM and ICD diagnostic manuals. Ultimately, the criteria are open to interpretation by clinicians who use their own experience to make decisions if someone is meeting them or not, and are influenced by their own biases and expectations. We're diagnosing people with a milder range of problems than even 10-15 years ago.

Underdiagnosis of girls and women - but it does not explain why the numbers continue to grow so rapidly, especially for women. This is also the demographic with a history of having the distress pathologised rather than contextualised- as hysteria, personality disorder, depression and anxiety etc. - and I wonder if we're missing systemic factors. A diagnosis means a possibility of reasonable accomodations, but no systemic changes in schooling, work practices etc.

The psychologist who diagnosed my daughter told me that they used to discount autism if the yp gave eye contact. This was seen as a deal breaker. This is no longer a deal breaker. The old guidelines were based on male presentation - girls were masking because they had been taught social skills more overtly.

As she said to me, parents of autistic boys tend to send them to football/rugby. Parents of autistic girls tend to send them to performing arts classes. A lotbof girls have been taught social skills in a way boys aren't.

I expect the assessment process will have to be dialled down eventually and made much shorter as we will not be able to justify spending so much on conditions which can be self certified.

Some health boards are beginning to stop offering diagnosis pathways on the basis that it is not a mental health condition and does not require treatment.

Yes, this is one of the outcomes, it will be increasingly harder to get assessment on the NHS. I also expect it will be harder to document impact/disability for those who are affected the most - which is already happening. Also, there is no driver to adapt services on a larger scale - schools, workplaces, health, care - so it further increases the pressure on diagnostic services to prove the impact on individuals rather than the unreasonable systems / expectations. I don't think it's a sustainable model, but I hope to be proven wrong!

@ThirdCoffeeThisMorningbut is this a bad thing? Everything important is based on need. EHCPs/ DLA. No diagnosis necessary. I’m not bothered about chasing a diagnosis for my DD as she has a watertight EHCP which will allow a good transition to secondary. I don’t apply for DLA as she doesn’t cost me anymore in terms of money than my NT child, but I know there are expenses in raising a disabled child and so I’m glad the money is there for others or for us in future incase things change. A diagnosis is just a piece of paper and it really means very little. In MH services, there is some benefit to having a diagnosis so that professionals can better understand why you may struggle, but if someone is clearly on the spectrum, we would treat them in a neuroaffirmative way anyway.

Agree that it is the assessment of needs that is more important.

In my experience you tend to need a diagnosis to back up what you say the needs are. It's great if you got the help without a diagnosis, but a lot of people do need it. For example, if you want a place in an autism unit, you probably need a diagnosis. And with the way the Gov is going on disability cuts, I would be worried that not having a diagnosis would make it easier to turn people down for things like PIP, adult social care.

And then Hans Asperger sent the children off to a concentration camp where they all "mysteriously" died of pneumoia a few months later...

What health boards have stopped offering diagnosis? That's concerning, you can't self-certify autism. While there are no treatments for autism, the diagnosis papers are often required to open doors to necessary support and services.

https://www.bbc.co.uk/news/articles/cy5nv744ek7o#:~:text=NHS%20Tayside%20has%20stopped%20all,an%20%22extensive%22%20waiting%20list.

So they’ve not stopped doing assessments - they’ve simply stopped taking new referrals until they’ve cleared their backlog?

https://www.thecourier.co.uk/fp/politics/5185658/stirling-adult-autism-axed/

They’ve stopped accepting referrals unless comorbid mental health conditions

But every person I know who has been referred (my own children included) have been referred precisely because there is concern over the co-morbid MH or SEN conditions?

That's very disturbing. Not only stopping new referrals, but stopping the whole thing. Many on that waiting list would have been there for years only for it to be a dead end. They would have found it extremely difficult to get to that position, and now they're back to square one.

Would the NHS have more money to support vulnerable adults if it wasn't involved in legal cases against its female staff?

That is an interesting theory, another poster also suggested that autistic people find eachother and marry/have kids. Plus people from socioeconomic groups dont tend to marry outside that group. So very interesting, the idea that these things all combine to make a trend, rather than deprivation levels being a cause in and of themselves. I had not thought of it that way before.

People above are speculating as to in reading diagnosis rates. I think it is an interesting dilemma the idea that a diagnosis helps get access to support. I didn't have that growing up and I had to struggle quite badly, but I had a kind of drive to keep working and make a career. I wonder if I had been diagnosed as a child if I would have put up with that struggle or just accepted I was autistic and limited myself or relaxed into not pushing for more.

I do know why I sought diagnosis in later life, and that is a repeating pattern of nasty incidents at different workplaces that led me to realise I need some kind of protection as I age and my risk of being disposed of in never ending restructures increases.

Quite.

If you are having a mental health crisis and autism/adhd is suspected and then you are told that referals have been suspended how is that going to help you?