‘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

O'Sullivan doesn't't know what the fuck she is talking about. Sounds very much like a typical dismissive arrogant patronising doctor who I hoped will be dying out soon. It's also unsurprising that the Telegraph is continuing with the rhetoric demonising the ill and disabled and therefore also those claiming benefits. Utter hullshit.

as well as affecting you financially with travel insurance and life or medical insurance.

I have never understood this attitude that it's somehow a good idea to have an undiagnosed health condition stay undiagnosed for the sake of money. Shrouds don't have pockets and there's nowhere to spend your money in a cemetary.

You have totally missed my point.

Your friend' child was diagnosed, one presumes as a child, and given parental steer informed by that diagnosis. I was replying to a poster who said of adult ND women that "diagnosis is in most (almost all?) cases is inappropriate".

Those of us who weren't diagnosed until adulthood did not get a diagnosis-informed parental steer as to what work we should do. I spent the first decade of my working-age life flunking out of uni in my second year, then bouncing from inappropriate job to inappropriate job, with protracted periods on Jobseekers Allowance. Because my parents didn't know I was autistic, they couldn't advise me as to a sensible career. Because I had no diagnosis, I was required by the JC to apply for any job going.

Because I had no diagnosis, no one, not even me, considered that waiting a few years to go to uni might be wise because autistic people are on average three years behind their peers in emotional development. Because I had no diagnosis, I couldn't apply for support at uni. I went to uni again as a mature student and got a degree, but I'm paying back five years' worth of student loan when my degree took three years. Not being diagnosed as a child can literally cost thousands of pounds.

There seems to be a popular misconception that someone late-diagnosed has been able to cope fine so far in life. The reality is very different.

Everyone who is late-diagnosed should have been diagnosed as a child and missed out on peer support, reasonable adjustments, self-understanding, and the possibility of at-school and at-uni support because they were not diagnosed as a child. Even if all they can access with a late diagnosis is self-understanding, reasonable adjustments, and the support of peers, those things help and they shouldn't be denied them.

No, I haven't. You're arguing that being diagnosed with a cancer that currently only requires watchful waiting is bad because it will increase health insurance premiums. Speaking as someone who has been refused life insurance outright on medical grounds, I can assure you that that argument is batshit.

@selffellatingouroborosofhate I take your point.
My friends DS though was diagnosed as a young child about thirty years ago and it would be obvious to anyone who met him that he had some kind of disability. University was never an option for him, it was obvious he would have to do some kind of manual work. The focus at school was to get him literate and with reasonable numeracy.

I think the more recent push to get everyone to university does not do some young people any favours.

Except that is not what I said. I said that any diagnosis has negative impacts, even if it also has positive impacts.
So being diagnosed with a low grade cancer that is never going to need treatment has negative social impacts. And this discussion started on this thread with someone talking about how whole body MRIs that you can pay for privately to detect any hidden cancer are a bad idea.

Incidentally I would also not be able to get medical insurance. What would really upset me though is if I could not get travel insurance for a low grade cancer that was never going to need treatment. I know there are specialist forms, I already use them and pay a large premium. But once you have cancer you can find it impossible to get travel insurance for certain countries.

I think the more recent push to get everyone to university does not do some young people any favours.

Amen to that! Having met kids of fifteen who were bored stiff at school and relished their Saturday jobs, I think that the push to get everyone to sixth form isn't even a good thing.

And it just means that employers slap a degree in the "essential criteria" of job descriptions to try to reduce the applicant count when a degree isn't actually needed.

Yeah, OK, I hadn't joined what you were saying to the whole body MRI scans.

I agree that going looking in that way isn't wise.

any diagnosis has negative impacts

I'm trying to think of any for my autism diagnosis and my migraine diagnosis and all the other diagnoses I have, all of things that measurably and adversely impact my life. Can't think of any, bar the impact of my depression with suicide attempts on my ability to get life insurance.

The labelling idea is good too, especially if given in childhood

Imagine living your whole life with a label, then realizing as an adult it's now not really true

Yeah. Imagine living your whole life being told that you have EUPD, but the treatment doesn't work, then you find out that you were autistic all along.

Overdiagnosis is a particular type of incorrect diagnosis, as are underdiagnosis and misdiagnosis.

Focussing on overdiagnosis without looking at misdiagnosis and underdiagnosis doesn't fully address the problem of people not getting appropriate treatment (which may be "none").

But these “labels” given in childhood are often held up as the way to get our children support. Without it we are constantly told they are ok and we’re making stuff up, when we’re not.

With hindsight my son’s diagnosis has been useless to him, but if I had my time again with the knowledge I had then I would have to do exactly the same. The problem for him (and thousands of others) was school. If school had the flexibility in approach that it had in the 80s many of our dc would have probably scraped through and then had more chance to do their own thing after school.

Right now in schools there’s a whole push to talk about mental illness which drags the vulnerable into victim mode. In school no one really wants to support the ND kid so their behaviour/school refusal escalates. Modern classrooms are a sensory nightmare. Secondary school has been described by many as chaotic environments where all nurturing goes out of the window. Fling a ND child into that sort of sink or swim environment and very often they will sink, resulting in disregulated behaviour one way or another.

It wouldn’t cost a penny to tone down classrooms so they were calmer sensory-wise.
It wouldn’t cost anything to lower noise levels, to turn off the smart board when not in use.
It wouldn’t cost to introduce another attendance option, or to use authorised absence more often for the sake of those with medical conditions or ND (diagnosed or not).

It’s clear with all these current threads that people (NT people?) are up in arms about the rising numbers of autistic and ADHD children, but no one will take schools to task for the things they actively do every day that make life for ND children more difficult. Yes there needs to be a funding increase, more special schools and everything, but since the 80s/90s there’s been a steady increase in unnecessary crap - physically in the classroom, or mentally with unfair attendance rules and increasing inflexible rules, many of them arbitrary, which could be done away with and immediately help ND children and not adversely affect NT children.
Bullying should be dealt with better, but we all know that.
People seem so keen to demonise SN children and their parents without even considering what’s brought us to this point, where parents have no choice other than to seek a diagnosis for their struggling child.

And actually I think there’s been damage done to everyone with a turn towards fear based teaching practices rather than empowering, which was more likely 30 years ago. I struggled at school but remember the overall message was that we could do anything. Younger generations seem more frozen by how climate change is going to kill us all, rather than an approach that says “you’re the generation that’s going to come up with great ideas”.
It’s utter madness, and so obvious from 2004 when my oldest started school that this is where we were headed.
But people would rather come for the most vulnerable children and blame them and their parents.

Edited: there’s the nuance between schools that’s being lost. I heard a podcast about academies started in inner London that introduced strict rules and boundaries that helped groups of boys who were at high risk of ending up in gangs - it was life changing for them.
This model ended up being adopted all over the country, and whilst they look like they’re getting the same great results, they’re not - SN children are routinely managed out aggressively. Others may appear to be doing well, but end up not doing well after school, because they’ve been taken down a purely academic route, when typically there would be many go on to be mechanics, plumbers etc, but have been made to feel that they shouldn’t do that.
In my rural area now there’s a shortage of young people going into these trades, and the slack is being taken up by university leavers who realise that they’ll earn more and have more freedom by doing these jobs, leaving the academy leavers often struggling as adults. Not all, obviously, but this is a definite pattern I’ve seen in my rural area.
This also leaves fewer apprentice positions for those who leave school at 16.

I agree, Ive been quite shocked on this thread that some people think like this. A clear lack of understanding about MH issues.

A section of the book was printed in the Guardian too.

i guess readers will agree, until they have a relative diagnosed!

i think the issue comes down to cost, the cost of dla etc.,

Ethics committees often do push against these.

I'm autistic, and hyperverbal. My son is autistic and pre-communicative.

I know that from a parental perspective there's a sense of desperation to know, and want to prepare a child in the best way possible for success in life and to help them develop, as well as the utter exhaustion of being a parent carer for high needs children.

Ethically though my child couldn't consent to clinical trials and I would have to consent on their behalf. Consent on someone else's behalf when they already don't have a voice is further taking choice away from them.

It's an entirely selfish motivator to want to consent to something that is experimental when you're consenting for someone else to undergo that treatment.

My son has speech apraxia as part of his autism but he isn't unhappy and not all communication is verbal. He's at his most unhappy when his needs aren't being met, and it's easy for his needs to be met when people take the time to educate themselves about autism without having to undergo ethically unsound clinical treatment in it's infancy.

I object to the phrase aspie supremecy but it is a term widely used to acknowledge the privilege that lower support needs individuals have in advocacy compared to our high support needs individuals and therefore as someone who has lower support needs than someone who is non-verbal with lifelong developmental delays, I would want to protect them from treatments and testing in which they can not consent.

The stakes in clinical research in autistic people has historically been used as a stick to beat autistic people with. In institutions, historically, and let's not forget about Herr Asperger himself.

It has all been deeply routed in eugenics and mistreatment.

I'm not so desperate to know the cause of autism, but I am desperate for society to find ways to support our autistic people reach their own individual fullest potential and support the parent carers of those with the highest needs.

Another article exploring the subject/O'Sullivan's book. Including the useful point that overdiagnosis HURTS those who have severe conditions.

From reading above it strikes me that those who most need to understand this issue are lest likely to read it. But I guess twas ever thus.

www.newstatesman.com/culture/books/book-of-the-day/2025/03/our-overdiagnosis-epidemic

interesting article @NewNeolithic

He's at his most unhappy when his needs aren't being met

Can I ask what this looks like, practically speaking? I hear this a lot around ND kids, but don’t know what an example of these needs is.

@JoyousGreyOrca
I never said that. But you are assuming all your acquaintances are NT you are also making assumptions You can't know that.

I'm not so desperate to know the cause of autism, but I am desperate for society to find ways to support our autistic people reach their own individual fullest potential and support the parent carers of those with the highest needs.

I don’t think this is going to be an option in the context of the thread. We are spending ££££ on disability and SEN at present and I don’t think the government will be able to justify spending even more, particularly if there’s a case to be made to find out why so many people are struggling and instead address that.

We all have needs.

A simple way of looking at his would be Maslows hierarchy of need.

However for you or I we can speak, and we're fairly self sufficient.

When you're autistic your brain often lacks the ability to filter out sensory stimulation to focus on certain sources. For example you're in a cafe, the lights are bright, someone's steaming milk, it's busy and there's a lot of chatter, there's a bell on the door that dings whenever someone comes or goes, there's a kid with an iPad on full blast 2 tables along.

If you wanted to speak to the person over the other side of the table you'd probably be able to do it and filter out what they're saying from this background of noise and the noise wouldn't be particularly harmful or hurt you in anyway, nor the light because the filter in your brain works to do it's job.

If that were an autistic person there's a very high chance they'd struggle. They might have delayed processing, they might hear everything at the same level, and their brain will try and filter all of this information all at once. This is overwhelming. Its like being told you've got 7 deadlines to meet within the hour at work after your colleagues have all gone home after lunch and there's a presentation first thing tomorrow kind of stress that you feel all the time in these environments. Add to this, if you can't speak, how can you advocate for your needs? You can't say " I need to go somewhere quiet. Do you have any spare sunglasses? I'm going to put on my headphones now. Let's text instead. Can we reschedule?"

Another example would be in mainstream schools.

30 kids per class, bright lights, the whole schools lunch is at the same time. Hundreds of kids in the playground all making noise and running in different directions. Nothing is predictable. The work in class isn't set out in a way you can access, everyone needs to sit still heads up pencils down, but you need to physically move to help soothe your nervous system so the information sinks in but when you move you get in trouble so you're stressed out, everybody is playing the game really well, but you're expected to play the game of life well too except you weren't given an instruction manual and when you are it's in a foreign language, on top of all the sensory input that is causing you psychological pain but you're legally expected to be there 6 hours a day 5 days a week. You need a break, you need quiet, you need to be able to move around, and you need adults there that understand this and can meet those needs.

We all need a voice whether it's a spoken voice, AAC, hand leading, pointing, gesturing, grabbing, PECS, or a very understanding and familiar adult.

I had the unfortunate displeasure of witnessing a carer take away a child's iPad for dysregulated behaviour which took away that child's voice through their AAC. The child was seeking a distraction, wasn't following an adult led task, and was therefore chastised as naughty. That child then had to rely on others to interpret his needs, which they were already doing a poor job at as they'd not noticed he needed sensory input due to dysregulation and he was using his autonomy to do that when they took it away.

We all need safety and comfort. We all need to take up space and not make ourselves smaller for the benefit of others.

I just really disagree that there exists a group of "NTs" for whom everyday life is a walk in the park, who go about their business with no struggles, who easily fit into every social situation and never lose their keys. And that there are "NDs" who are individually and measurably different from this clear norm and who need very different help from the NTs. (Which is what diagnosis is.)

To say it a different way: we could simply put less pressure on kids to go to university directly out of school, or remind them that they could get a warehouse job if customer service doesn't suit, or whatever.

I think @selffellatingouroborosofhate , you have attributed several turning points in your life as being caused by diagnosis, but as I read them, they're all things that are perfectly accessible for anyone: buying sunglasses, ordering groceries online, etc. In the 80s you probably could have got the same advice out of a self-help book. I'm not saying that to be disparaging, genuinely, I've had setbacks in my career and have spent hours and hours on forums for "AuDHD Women" or whatever and found so many useful tips.

But I would have got the same advice if it were a forum for "scatterbrained Geminis".

It is often useful to have shortcut labels for personality types. That's not the same as a medical disease.