‘Interesting’ article on overdiagnosing in Times.

[Soontobe60]

Just putting this here for discussion.
https://www.thetimes.com/article/9f82545c-57f5-4db2-8a47-9a8cc2304243?shareToken=c0f809004b0c59cf1b96f6b6eb6129c3

I just did an AQ50. I got 35 out of 50. Apparently autism spectrum is 33-50.

So perhaps that’s why I’m struggling with this in my head. Is because I am exactly the kind of person I’m talking about when I say ‘everyone else’ 😂

Reading these questions my partner would do very poorly in some of these questions. Particularly social. So I can see why boys would perhaps score worse on these. It’s an interesting set of questions.

One of which is do you struggle to imagine being someone else? So maybe my mild ‘ND’ is what’s making this difficult to process. 🤷‍♀️

Many of those children with EHCPs will absolutely need a decent State Pension when they reach SP age, as they will be unlikely to have a private pension. It shouldn’t be an either / or situation

@POSTC123 the AQ50 is diagnostic, so it isn’t a case of a high AQ50 = autism. It is an indicator further assessment may sometimes be necessary. Sometimes it isn’t necessary and sometimes that further assessment indicates the patient does not have ASD.

Occupational pensions didn’t become mandatory until 2012
and then only for large employers
By 2018 they were mandatory for all with those 6 years in between picking up medium and small employers

If you were working in a medium size office then you didn’t qualify till at the latest 2018!

For middle aged people that didn’t give them long to build up a pension ( with no requirement for employers to pay anything )
Anyone retiring today would have been 59 then.

We are very far away from retirees having a good private pension to retire on with some only 12 years so far and everyone else only 6 years.
2018 + say 30 years of payments brings us to 2048 ! Not 2025!

Changing anything at this stage is showing a lack of consideration for the many workers who have not benefited from mandatory occupational pensions over their working lives.

We don’t all work in the public sector.

Thanks. It is interesting though that NT girls are apparently no where near the 35 mark on your graph. When I know plenty of undiagnosed girls who would probably end up there or further.

Also interesting about the pattern details obsessive interests questions. That’s pretty much how I ended up psychotic. They did ask me if I had ND.

Im not going to explore it further but if I have another episode it might be something worth looking at. I would rather a ND diagnosis than schizophrenia so perhaps in those circumstances it would be actually be very helpful 😂

@POSTC123 I think you have quoted the wrong person. I haven’t posted a graph.

The phrase 'everyone is on the spectrum' absolutely doesn't imply that everyone would be close to the threshold line or even that most people would be. You can have an unevenly distributed spectrum and it's still a spectrum.

Using your graph, it's clear to see that a huge amount of apparently NT individual (especially boys) would either meet the threshold for screening or be just a few points away from meeting the threshold. Around a quarter of people who have already been diagnosed with ASD apparently sit within the 'hump' of NT.

Also most importantly, the distribution of scores for apparently NT girls range from 0-30. Whereas there is about a 25 point difference between the peak of the girl NT curve and the peak of the ND curve. This suggests that there is more variance amongst girls that are NT than there is between the majority of girls that are NT and people that have been diagnosed with Autism.

None of the above is evidence of their being binary ND and NT brains. This is also why brain scans can't be used to diagnose Autism.

My apologies

I think the research is to know if it can be cured. No one knows well enough to know if a "cure" will ever be found I think. Someone said someone that autism doesn't main, I disagree with that. If it doesn't hurt or Maim, then people wouldn't need support with it

There's so many ill-informed opinions that I lost interest after a few paragraphs. I don't know where she studied but she's talking rubbish.

I think the number of non verbal autistic children has massively increased. I really think one day we’ll discover the cause of it and it will be a different condition to the ‘high functioning but anxious’ profile. An SLT on here said non verbal autistic children were rare when she first started, and now they make up over 90% of her caseload. Will see if I can find the thread it was an interesting read.

And the soaring number of non verbal autistic children is not about over diagnosis. It is a real rise.

I explained about the AQ50 being a screening tool that is designed to deliver false positives in order to minimise false negatives. So we expect some NT kids to score over the threshold, that's an acceptable trade-off.

There's a downloadable PDF of the whole paper that gives a by-sex breakdown of the autistic kid's scores in a huge table on the page marked 348. The graphic makes it easier to see the two clear peaks but doesn't allow for precise analysis. A bar chart would have been more appropriate for representing this data.

Looking at the table, the lowest AQ50 score that any autistic children achieved was 24. The highest AQ50 score achieved by any of the control group was 29. The total proportion of kids by sex from each group who scored from 24 to 29 inclusive was

• Asperger boys: 10.2%
• Autism boys: 6.3%
• Control boys: 24%
• Autism girls: 12.5%
• Asperger girls: 0%

• Control girls: 4%

So not 50% overlap, at all: an overlap in AQ50 score between the highest-scoring 24% of control boys and the lowest-scoring 10% of Asperger boys and the lowest-scoring 6.3% of autistic boys, in a screening tool that's designed to quickly rule out autism in those who almost certainly don't have it and so only checks for the most noticeable and common traits. A more thorough assessment of those 24% of control boys might reveal any of the following:

• A missed autism diagnosis.
• A missed diagnosis for another neurodivergent condition, such as ADHD.
• Failure to detect trauma from ACEs that manifests as coping strategies that mimic autism.

The data from that paper demonstrates that there is very little overlap in the prevalence of noticable and common traits between autistic people and neurotypical people and very few people have a small amount of traits or only manifest traits mildly, which is the point I am making to counter the "we're all on spectrum" myth.

Something can disable without causing pain or removing body parts. Deaf people have ears yet are still disabled.

Yes I wish this would be acknowledged.

But I do think there is over diagnosis as well.

Micromanaging and performance management stopping informal adjustments are phenomena that demonstrate the social model of disability. Someone who was working well in a team with others, trading tasks on a quid pro quo basis to manage an impairment and is suddenly barred from doing so, is made disabled by the change in management style.

Not managing people like cogs in a machine is an example of where a reasonable adjustment for a disabled person benefits the whole team. If your social-awkward autistic person is a spreadsheet wizard and the people person at the next desk hates running the weekly timesheet calculations, they can trade tasks to both work better because people tend to suck at tasks they hate.

The threshold is 26, which is in the middle of the graph and not where your yellow lines are!

We are mandated to provide free primary education for every child. If a child can't attend school because of lack of SEND support then their human rights are being violated. You might read Articles 23, 28, and 29 of https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-child as they support what I am saying.

⬇⬇⬇⬇⬇⬇⬇

Article 23

1. States Parties recognize that a mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child's active participation in the community
2. States Parties recognize the right of the disabled child to special care and shall encourage and ensure the extension, subject to available resources, to the eligible child and those responsible for his or her care, of assistance for which application is made and which is appropriate to the child's condition and to the circumstances of the parents or others caring for the child.
3. Recognizing the special needs of a disabled child, assistance extended in accordance with paragraph 2 of the present article shall be provided free of charge, whenever possible, taking into account the financial resources of the parents or others caring for the child, and shall be designed to ensure that the disabled child has effective access to and receives education, training, health care services, rehabilitation services, preparation for employment and recreation opportunities in a manner conducive to the child's achieving the fullest possible social integration and individual development, including his or her cultural and spiritual development.

Article 28

1. States Parties recognize the right of the child to education, and with a view to achieving this right progressively and on the basis of equal opportunity, they shall, in particular:

(a) Make primary education compulsory and available free to all;

Article 29

1. States Parties agree that the education of the child shall be directed to:

(a) The development of the child's personality, talents and mental and physical abilities to their fullest potential;

⬆⬆⬆⬆⬆⬆⬆

Yes, 23(2) says "subject to available resources", but the bar for deciding that those resources aren't available is rightly high because of 28(1)(a) and 29(1)(a). Primary education isn't "available free to all" and developing "the child's personality, talents and mental and physical abilities to their fullest potential" if there isn't appropriate SEND provision for that child at school.

It doesn't prove any of what you're suggesting though.

Even taking your statistics at face value then 24% (i.e a QUARTER) of 'control' boys overlap with 17% of diagnosed boys. That's can't sensibly be described as 'very little' overlap. There is clearly a rather large grey area.

Your point about it being only a screening test implies that there is some objective, definitive test that can subsequently be run that can distinguish those who score highly in the AQ50 and are in fact NT from those that have autism. My point has always been that no such test exists. We are nowhere near even beginning to create such a test and at this point don't know if it will ever be possible.

So all that happens is further tests are run such as an ADOS test and the output from this will be used to diagnose people. Then data is used from these observational tests to feed graphs and studies like you have shown to 'prove' how accurate autism testing is. The elephant in the room is obviously what if the underlying understanding behind the AQ50 and ADOS tests etc could be wrong and we are therefore just using bad data to prove the accuracy of other bad data.

Even taking your statistics at face value then 24% (i.e a QUARTER) of 'control' boys overlap with 17% of diagnosed boys.

17%? You assumed you could add those two figures together and get any kind of useful figure? 😂😂😂😂😂😂

Tell me that you don't understand how statistics work without telling me.

I'm not being lectured about "bad science" by someone with such a poor grasp of basic stats.

This is absolutely ludicrous. The bar absolutely isn't high as you imply as you only need to look at the other countries signed up to these rights to know that no country on earth are delivering SEN education in the way that you seem to think these Articles compel them to.

I would wager that the majority of children in this country are in schools that don't develop 'the child's personality, talents and mental and physical abilities to their fullest potential". OFSTED tell us this! This certainly isn't a problem unique to the UK and isn't something that you can take the government to court over. That's because these Articles are not legally binding in the way that you imply.

Also of course the 'available resource' reference is extremely relevant. It acknowledges that all countries are limited by how much support they can provide for children in education. The Articles you cite absolutely don't supercede this obvious fact. You are objectively wrong about this! The UN has no power to control how the British funds SEN education and the government could make large cuts and still be as compliant with this convention as many other countries are

If you are right, how come so many EHCP refusals are overturned on appeal?

@selffellatingouroborosofhate I do agree with you about the triple lock. The pension system is unaffordable.

Removing the triple lock and letting the state pension slowly inflate away over time rather than removing it abruptly is actually probably one of the best things we can do.

I would definitely not throw the savings at funding the current EHCP education model though!

The attached pic shows where the cutoff score of 26 is. I also did an analysis upthread based on the table in the journal paper.

And, for the last time, AQ50 is a screening tool. No one is diagnosed on the AQ50 alone. It is a list of fifty questions about common and obvious autistic traits that is used to decide whether a formal assessment is necessary. For my purposes, it is a useful demonstration of how few people, autistic or NT, show the traits in some kind of "middle ground" way. Autistic people show them a lot and neurotypical people show them very little.