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Overdiagnosis of Autism

by Dr Carl Heneghan and Dr Tom Jefferson
27 April 2024 11:00 AM

Last week, we introduced the concept of overdiagnosis in prostate cancer screening. It didn’t take long for the issue to rear its head again as the Telegraph reported ‘Why autism and ADHD self-diagnosis may be inaccurate‘, and ‘ADHD and autism referrals are up fivefold since the pandemic‘.

These reports are based on a recent Nuffield Trust report, which “shows that there might be as many as 1.2 million autistic people and 2.2 million people with ADHD in England”. Furthermore, in December 2023, there were 172,022 patients with suspected autism waiting to be seen – the highest number ever reported and five times higher than the 32,220 waiting in 2019.

According to the Telegraph, experts blame “diagnostic creep”. An NHS task force is investigating the problem. “NHS England has also begun important work into investigating challenges in ADHD service provision and last month launched a cross sector task force alongside Government, to help provide a joined-up approach for the growing numbers of people coming forward for support.”

At the TTE office, we decided to try out the AQ test, developed by Cambridge researchers in 2001 and popularised by Wired magazine. Here’s a link to the test. 

Here at TTE, we hit near the threshold because we scored highly on questions such as “Are you fascinated by numbers?” People also often tell us that we’d keep going on and on about the same thing – take excess deaths as one example. And we frequently find it difficult to work out people’s intentions – we have no idea what the WHO is up to in its latest treaty.  The difference between answering definitely or slightly agreeing is enough to tip you over the edge.

Diagnostic creep is a phenomenon where the diagnostic threshold is expanded to include ambiguous or very mild symptoms. Overselling promotes adult autism by moving the line that separates normal from abnormal – people with milder and milder symptoms get diagnosed. While the symptoms may be intense or debilitating for a minority, they are mild or fleeting for most.

People on the waiting list report they want a formal diagnosis of ADHD or autism; they just want to know. However, reports say they are not looking for medical treatment, be it prescriptions or talking therapies; they’re looking for “validation and recognition”. 

But the consequence of diagnostic creep is disease-mongering. Widening the diagnostic boundaries allows aggressive public promotion to expand the markets for treatment. As an example, ADHD prescribing has risen by 50% over the last five years. 

With 3.4 million potential patients, that’s a lot of drugs to sell to people who may never benefit and often will be harmed. And if you think healthcare can meet such demand, then think again.

Dr. Carl Heneghan is the Oxford Professor of Evidence Based Medicine and Dr. Tom Jefferson is an epidemiologist based in Rome who works with Professor Heneghan on the Cochrane Collaboration. This article was first published on their Substack, Trust The Evidence, which you can subscribe to here.

Tags: AutismNHSNHS BacklogOver-diagnosisOver-medicalisation

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34 Comments
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10navigator
10navigator
1 year ago

An excellent article by Sally Beck in the Conservative Woman (25th apr) covers the rise in Autism diagnoses. In the USA, from one case in 10,000 in the early 70s, it’s currently around one in 40. Perhaps it’s coincidence that the US children are scheduled for 70 (seventy) vaccines in their early years. Andrew Wakefield’s case gets some (deserved) attention too, and the Autism/MMR link comes under much scrutiny, with many links covering the twenty year saga and hatchet job on Dr Wakefield. Well worth a read.

Last edited 1 year ago by 10navigator
84
-4
huxleypiggles
huxleypiggles
1 year ago
Reply to  10navigator

https://www.conservativewoman.co.uk/vaccines-autism-and-an-epidemic-of-official-lies/

Here you go.

(I wish Kathy Gyngell would go back to the original TCW layout. The current structure is a damned mess).

31
0
huxleypiggles
huxleypiggles
1 year ago

Off-T.

https://www.conservativewoman.co.uk/outsourcing-politics-killing-democracy-fomenting-revolution/

An excellent article from Paul Collits on what we can expect when Kneel takes over later this year. More Bliar madness. And on steroids.

25
0
huxleypiggles
huxleypiggles
1 year ago

https://off-guardian.org/2024/04/26/quick-take-so-whats-with-all-the-spying/

Kit Knightly at Off-G with a brief look at the current craze for spy stories. Sadly even The Speccie is obligingly putting out commentary.

Kit Knightly is correct, it is simply additional fear porn.

18
0
Free Lemming
Free Lemming
1 year ago

The new trend of diagnosing middle aged men and women with ADHD is, I’m sure, nothing to do with selling drugs and therapy. I mean, we know that pharma and the medical industry in general only acts in the interests of their patients right?

A 55 year old chap where I recently worked, who’d always worn a coat of superiority, decided to share with a number of us that he’d just been diagnosed with ADHD, and that was the reason for his behaviour. It wasn’t. He’d just found a way to excuse himself for being an absolute arsehole.

110
0
CircusSpot
CircusSpot
1 year ago
Reply to  Free Lemming

Neuro diverse is the latest must have diagnosis in these parts.

28
-1
Steve-Devon
Steve-Devon
1 year ago

It seems like the test for autism is a series of questions, in which case it would appear to be a subjective test, subject to the type of answers given and subject to interpretation by the diagnostician. If you think you may have broken your leg you have a X ray and usually get a clear answer which is much more of an objective test.
Ralph McTell once wrote a song which I always assumed was about autism; ”Michael in the Garden’
https://www.youtube.com/watch?v=eoShjY-mWsY
All of which, as this article suggests; begs the question; why is autism a problem? To my mind it only becomes a problem when it raises serious barriers to someone being able to function as an independent adult in society and that is not always an easy assessment to make

31
0
Marcus Aurelius knew
Marcus Aurelius knew
1 year ago

“My kid is special.”

41
0
disgruntled246
disgruntled246
1 year ago
Reply to  Marcus Aurelius knew

My son kept trying to tell me he had ADHD ‘because I find it difficult to sit still’. I told him, what you’ve got is called ‘being a boy’.
I dare say there are autistic kids out there but too many are quick to pin a disability label on their kid instead of admitting he or she is just a pain in the backside.

Last edited 1 year ago by disgruntled246
50
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godknowsimgood
godknowsimgood
1 year ago

The majority of the questions in the AQ test can honestly be answered either ‘agree’ or ‘disagree’. For example:

Q1. I prefer to do things with others rather than on my own.

Honest answer: I prefer to do some things with others, and I prefer to do some things on my own. So I could quite honestly answer that question either way, depending on my inclination at the time of answering. 

Q2. I prefer to do things the same way over and over again.

Honest answer: Like most people, I like routine, it makes life easier, but I don’t prefer to do every single thing the same way over and over again. So I could quite honestly answer that question either way.

Q3. If I try to imagine something, I find it very easy to create a picture in my mind.

Honest answer: How do I know how ‘easy’ or otherwise it is ‘to create a picture in my mind’ compared to how ‘easy’ or otherwise it is for other people to do it in their minds? I don’t have experience of the workings of other people’s minds, only my own mind. Therefore, compared to other people, I can’t be sure. So, again, I could quite honestly answer that question either way.

Q4. I frequently get so strongly absorbed in one thing that I lose sight of other things.

Honest answer: Like most people, if I get absorbed in various activities (watching a film, a football match, a DIY job, writing an email or something like this in the DS comments section, shopping, talking to a friend, preparing a meal, etc), I don’t think about other things while ‘absorbed’ in the activity. But what exactly does “lose sight of” mean?

5. I often notice small sounds when others do not.

I generally don’t consult with other people as to whether or not they have heard “small sounds” that I have heard, it doesn’t make for riveting conversation, unless on the very rare occasions when the sound could have been made by a burglar or a mouse, or something. So, again, I could honestly answer that question either way.

Etc, etc, etc.

‘Any scores of 26 or greater indicate the presence of autistic traits; the higher the score, the more autistic traits you have.’

I decided to take the test twice, honestly both times, but with two different mindsets. 

Firstly, honestly but with the mindset that I’d like the result to show that I’m quite a normal person:

I scored 10.

Secondly, honestly but with the mindset that I’d like the result to show that I am an exceptional neuroatypical or neurodiverse person: 

I scored 38
 

Being introverted – which many people are – and/or having a somewhat obsessive personality – which many people have – do not mean a person is ‘autistic’, but it’s clear that anyone who is introverted and/or obsessive will come out in this test as having a high number of autistic traits. So introversion and obsessiveness are being conflated with autism, when they are not the same thing at all.

I agree with the authors of this DS article that there are some genuinely autistic people, and people with Asperger’s, but it can very easily be greatly overdiagnosed.

75
0
transmissionofflame
transmissionofflame
1 year ago
Reply to  godknowsimgood

I seriously doubt a self completed questionnaire could be usefully accurate for this purpose. In so far as I know anything about the autistic spectrum, I think it’s one of those things that is hard to pin down but you know it when you see it. It’s also a very broad spectrum and you would be hard pressed to see many similarities between those on either end in terms of their behaviour and life experiences and outcomes. For me
the defining quality is that autistic people don’t really have any “side” to them.

11
0
RW
RW
1 year ago
Reply to  transmissionofflame

For me the defining quality is that autistic people don’t really have any “side” to them.

What do you mean by that? (If I may ask)

2
0
transmissionofflame
transmissionofflame
1 year ago
Reply to  RW

Of course you may ask – we are here to question everything!

This is what I was thinking of: https://dict.leo.org/forum/viewUnsolvedquery.php?idForum=2&idThread=1258018&lp=ende&lang=en

It seemed natural to bring Paul home for Sunday lunch. She’d been scared at first to even ask, as though she was being too forward, too serious, but Paul had said yes immediately, that he’d love to. That was what she loved about him, that there was NO SIDE TO HIM, just complete straight-forwardness and genuine enthusiasm for her.

4
0
RW
RW
1 year ago
Reply to  transmissionofflame

Thanks. I think I even understand that and I would regard this as true. But it’s often perceived as the exact opposite, the pure mannerism perfected to the point that nobody can really tell how it’s precisely being just acted but everybody remains nevertheless convinced that it must certainly be one.

Hopefully harmless example for demonstration: After years of problems with trainers whose soles I had run through, this usually being noticed during the first heavier autumn rains, I decided that I should perhaps try some more solid footwear and switched to standard issue German army combat boots instead as these must surely be meant for walking. During the first longer trip with them, I hammered bloody blisters into both of my hindfoot soles. I concluded that this must have been due to having formed the habit of putting all of my weight onto them first with each step during years of walking with trainers. This didn’t work with these boots as my feet would give way first and not the soles of them. 🙂 I thus intentionally retrained myself to touch ground with the front part of my foot first. Technically, this worked nicely, especially as I also remembered that from my time in the military. But this became a minor Reading open air sensation and I had people literally following me and trying to parody the way I was walking for kilometers on end on occasion (and the usual string of minor run-ins and attacks).

3
0
transmissionofflame
transmissionofflame
1 year ago
Reply to  RW

I think people are bothered by difference, or maybe they are bothered by people who are comfortable in their own skin because it reminds them of their own insecurity.

I find the company of straightforward people preferable and refreshing.

4
0
RW
RW
1 year ago
Reply to  godknowsimgood

Q1. I prefer to do things with others rather than on my own.
Honest answer: I prefer to do some things with others, and I prefer to do some things on my own. So I could quite honestly answer that question either way, depending on my inclination at the time of answering.
—-

Well, the majority of people prefer to go the toilet alone and when they’re not in some kind of relationship, also prefer to sleep alone. But that’s not the point of the question, which is quite obviously meant as I prefer to do things with others rather than on my own in my spare time and people usually agree with that. When they go out, they’ll plan to meet some friends and spend time with them. I don’t. I don’t even have any friends as I’ve decided that it’s better to avoid hooking up with people than hooking up with the wrong kind of people, eg, the drug scene.

—-
Q2. I prefer to do things the same way over and over again.
Honest answer: Like most people, I like routine, it makes life easier, but I don’t prefer to do every single thing the same way over and over again. So I could quite honestly answer that question either way.
—-

The natural ambiguity of language could again justify giving a wrong answer as you don’t prefer to do things in the same way over and over again. In contrast to this, each of my days starts with the same ten step procedure which always occur in a particular order and even in a particular way. The last of these is breakfast and that’s always the exact same breakfast, ie, always with the same ingredients and always prepared in the exact same order. I sometimes changes my habits if I have a better idea or want to try something different but maybe once per year or so.

The others are a bit more difficult, so, I’ll leave it at that.

10
0
Judy Watson
Judy Watson
1 year ago
Reply to  godknowsimgood

Is nobody allowed to be a bit ‘odd’ or eccentric any more? Must there always be a ‘diagnosis’ of something or other?

22
-1
AJPotts
AJPotts
1 year ago

Politics and Public Policy Playbook:

1) manufacture a crisis
2) orchestrate demands for something to be done by the state
3) ensure a state intervention takes place
4) publicise that the crisis has worsened
5) orchestrate demands for something more to be done by the state….

Rinse and repeat. Forever and ever.

45
0
JohnK
JohnK
1 year ago
Reply to  AJPotts

And perhaps another item: 6) As an election is in the offing, claim that you’ve done all the right things, and vote for us again.

8
0
huxleypiggles
huxleypiggles
1 year ago

Off-T.

https://childrenshealthdefense.org/defender/fda-ivermectin-covid-treatment-lawsuit-social-media/

FDA in a massive backtrack on Ivermectin.

15
0
huxleypiggles
huxleypiggles
1 year ago

Off-T

https://www.globalresearch.ca/excess-deaths-japan-3rd-covid-shot/5855764

A third of Japanese deaths in 2022 occurred after the third Covid injection.

19
-1
rachel.c
rachel.c
1 year ago
Reply to  huxleypiggles

Why so many off-topic references?

3
0
GlassHalfFull
GlassHalfFull
1 year ago

Or, autism and ADHD is rapidly increasing because of over vaccinating the population.
https://childrenshealthdefense.org/defender/defender-in-depth-mark-blaxill-autism-epidemic-overvaccination/?utm_id=20240403

28
0
Sforzesca
Sforzesca
1 year ago
Reply to  GlassHalfFull

https://officialbrendanmurphy.substack.com/p/5-huge-historical-vaccine-frauds

No. 5 deals with autism.
The rest are equally worrying.

10
0
RW
RW
1 year ago

Your headline is over-autistic as the article is really mostly about ADHD. That’s especially true for the conclusion as there’s no medication for autism. Judging from conversations I had about this in the past, there’s some entitlement to benefits for the latter and hence, you would perhaps have wanted to write something about millions of shirkers on benefits.

That said, for some reasons I can only vaguely gather, autism is somehow cool to have for some people¹ and I’ve encountered a small lot of people who claim to be autists but who otherwise seem to be socially perfectly well-integrated and differ barely, if at all, from the general herd. It’s not so much overdiagnosed as misdiagnosed, ie, the diagnosis is essentially a favour done to someone. At least, that’s how it looks like.

¹ Excuses their bad manners and general obnoxiousness, cf Chris Packham?

21
-1
soundofreason
soundofreason
1 year ago

Although I think over-diagnosis is a significant and possibly the major element I think there may be other factors too. The most obvious of which is upbringing/parenting. People are having kids later in life and it seems reasonable to me that this may have a direct effect on the developing child in utero. In addition both parents often continue to work and hand their kids over to child minders and early years nurseries and this too seems likely to have a direct effect on the intellectual and emotional development of the child.

However, I also speculate that environmental factors may have an effect. Obviously, given the origins of the site, we think of the wide use of vaccines but over the last few decades there have been other changes in the chemicals people are exposed to on a routine basis. One particular speculation of mine (I do not claim it to be more than that) is the increase in exposure and ingestion of surfactants – for example ‘rinse aid’ in dishwashers and other cleaning agents such as shower sprays. I detect and detest the taste of rinse aid in my morning tea and so always rinse cups in clean water after they’ve been dish-washed. Of course, not everyone has a dishwasher – but not everyone has an autistic child, either.

Surfactants can have a significant effect on chemical reactions and I think it not unreasonable that they might be in part to blame for developmental problems in kids.

13
-1
zebedee
zebedee
1 year ago

I’m probably autistic as well given the test. Are you fascinated by numbers? Yes, I’m a Mathematician. Do you keep going on and on about the same thing? Yes, epidemics don’t grow exponentially as has been known since 1840. Do I prefer working with computers to humans? It depends on the computer and the human.

27
0
JohnK
JohnK
1 year ago

Reminds me of an old event at one of the voluntary organisations I was working in (being a member of it), in which the manager told me that the young volunteer I was working with was Autistic. I didn’t need to know, and probably would no have noticed otherwise. Maybe events like that are common, and perhaps supported by the usual suspects.

10
0
Hoppy Uniatz
Hoppy Uniatz
1 year ago

After I scored well into the allegedly autistic range on that test, my brother took it upon himself to “beat my high score.” How autistic is that??!!!

12
0
RW
RW
1 year ago
Reply to  Hoppy Uniatz

Gaming these tests is obviously fairly easy. For instance, you can always intentionally invert your answers, as already suggested above, eg, Do I prefer to do the same thing over and over again? Absolutely f***ing not! Hence, the opposite must be the right answer! What that’s supposed to prove beyond that many people excel at cheating (Who da thunk?) is anybody’s guess.

3
0
varmint
varmint
1 year ago

The Liberal Progressive mentality is to turn every human behaviour into some malady or other. There are no idiots or morons any more, they are all just suffering from some syndrome or phobia and the big government is here to help.

12
0
rachel.c
rachel.c
1 year ago

My understanding is that autism is a serious brain disorder and you can’t be “mildly autistic” a la Elon Musk. It appears there is a massive increase in autistic people who cannot function and thrive without 24 hour support and attention from family and carers. Likely due to vaccines, drugs and other environmental factors (including the ubiquitous use of aluminium salts for all sorts of processes). Their on-going care is a huge issue. ADHD is another matter and a potential source of societal breakdown to the extent it renders people unable to function socially. Also likely stimulated by drugs and environmental toxins as well as things that go under the heading of “bad parenting”, including allowing children to access anti-social media. Maybe sometimes a result of Munchausen’s Syndrome by Proxy?

6
-2
A. Contrarian
A. Contrarian
1 year ago

In certain circles at least, it is VERY fashionable to be “neurodivergent”. People like to shoehorn it into the conversation at every opportunity and often it seems to be used to describe issues that to me are just part of the ordinary struggles of life.

It’s a bit like saying you’re trans/gender fluid/whatever; people then have to be nice to you in all circumstances because anything else might be construed as “fillintheblankphobia”.

Just like the people claiming to have Long Covid because they’re a bit tired after recovering from a virus, to my mind this takes away from the people who genuinely have real problems.

5
-1
brightlightsweetown
brightlightsweetown
1 year ago

It’s easy to dismiss Autism, ADHD and Asperger’s as quirky childhood behaviours. My eldest grandson, now 21, showed signs of Asperger’s when under two, lining his toys up in size order, lining cars up, walking on his toes(he still does) but had an amazing vocabulary, but no clue how to really understand other people’s reactions. He suffered dreadfully all the way through school, felt a complete failure, but had ambitions to be an electrician. He’s now in his final year of his apprenticeship, has a childhood sweetheart, and is the most loving young man, however life, and dealing with others is still not easy for him. Do I blame the MMR vaccine? most certainly I do.

7
0

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