Who's read 'Age of Diagnosis' (overdiagnosis in Long Covid, ADHD, Lymes, autism, cancer screening)

[FrodoBiggins]

Inspired by another thread, has anyone read/ listened to Suzanne O’Sullivan's new book Age of Diagnosis? I just finished it and found it so interesting. She's a high profile consultant neurologist.

Touches on Long Covid, Autism, ADHD, Lymes disease (all in terms of diagnostic debates) and also Huntingdons genetic testing and Cancer/ Alzheimers screening (along what benefits there are of knowing of a risk/ certainty of future illness, especially if there is no cure).

I'll quote from a review:

"in her outstanding new book O’Sullivan offers a third possibility; that variance in bodily and mental health is being unnecessarily medicalised and pathologised: “We are not getting sicker – we are attributing more to sickness.”
She describes a trinity of “overs”. Overdiagnosis, where a medical problem is treated when treatment might not be needed; overmedicalisation, where non-medical behaviours are turned into the business of doctors; and underlying both, overdetection: we are ever better at identifying signals of disease, sometimes earlier than necessary, when those indicators may not end up presaging the disease itself. Alongside balanced analysis of the epidemiological data on prostate and breast cancer, O’Sullivan examines the growth in behavioural conditions such as autism and ADHD. The tone is not sneering or dismissive, as debunkings of bad science so often can be. O’Sullivan is instead full of compassion, care and grace."

I believe it was also the Radio 4 Book of the Week. The full review quoted from above is here: https://www.theguardian.com/books/2025/mar/12/the-age-of-diagnosis-by-suzanne-osullivan-review-do-no-harm?CMP=Share_AndroidApp_Other

Has anyone else read it? Thoughts?

@NeverDropYourMooncup

Before I applied for a school place, I asked all professionals involved if mainstream was the best setting. All said yes, until I applied and the school SENCO rejected. I believe the school was attempting to off roll.

@NeverDropYourMooncup
“I believe that diagnosis is intrinsically valuable because it's a fact, whereas withholding one is a negative as it creates confusion and a lack of clarity. Does a diagnosis of sinusitis secondary to coeliac give clarity instead of putting debilitating headaches down to being female and a parent? Yes, as it means I know to avoid wheat and take a Sudafed before putting an icepack on my face if I feel a twinge above my eye or my cheekbone, rather than take ever stronger painkillers. Does knowing that somebody has Tinnitus and moderate hearing loss with or without ADHD give clarity? Yes, because it means they have a 'good reason' to not want to be moved into an open plan office, rather than them being difficult - there is an authenticated reason why it would be intolerable and affect their work, rather than firing them for poor performance. What people deride as a label can be a shield or a standard.”

I believe that too. And what you’ve described there is diagnosis = positive outcome.

For DS I started the ASD referral and EHCP process because I wholeheartedly believed it would result in a positive outcome for DS.

The turning point for me was refusal of a school place at the time that I was supposed to be buying uniform/DS meeting his new teacher.

Everything had been going in the right direction up until then, and I felt like I’d failed as a parent. I thought DS would be without a school place, when other children would be having their first day in reception.
So now I am extremely sceptical and I question everything.

I’m really struggling to understand various posters’ viewpoint that whilst recognising the huge range of impact that autism has on people’s lives we can’t talk about degrees of severity, say “high-functioning” etc.

I understand that those who I would consider severely autistic (eg non-verbal, completely dependent on others) are likely autistic but with an additional diagnosis of learning disability, which acts as a qualifier. And I appreciate that those who are high functioning (yes I’m using the term) may have severe difficulties in ways that are less obvious.

But why is it so ignorant to dare suggest there are degrees of severity. Why do you feel that autism is such a binary diagnosis - yes or no - when every other medical condition, personality trait, indeed any aspect of humanity can be considered on some kind of scale of severity and this does not seem to cause so much controversy.

I’m not trying to be goady. I just don’t get it. So please explain if you hold the view that vastly differently presenting people have the same autism.

Yes, I am aware of the concept of offrolling (and the Admissions Code, plus many, many other pieces of Statutory Guidance and the relevant Laws).

Offrolling doesn't apply to the EHCP consultation period, though - and although there are statutory deadlines for draft EHCPs to be sent to schools, I have seen some of the most obviously inappropriate ones only coming through at the weekend or during school holidays with an 'If we do not receive a response by <day before return>, the school will be named'.

It can also be like trying to access the Dead Sea Scrolls to get sight of the final document as well - at which point (if we ever get it - sometimes we've had to ask the parent if they've received a copy) there are extra things in there that we couldn't provide in a month of Sundays or, in the case of one particular diagnosis, we were informed by the specialist teams of both children that it's actually very dangerous medically for there to be two children with the same condition in the same school (or year group if they are able to be totally separated from the other 6 years, which they weren't) - but the LA still tried to put two into the same cohort and it took way past the usual transition time to get them to accept that potentially killing one or both of the children was a reasonable explanation for not being able to meet one's needs (confirmation that the second wasn't coming only came through on the Friday before the August Bank Holiday).

There's a lot of information that you have to provide for an appointment.

@NeverDropYourMooncup

Thanks - your posts are really good!

Perhaps not strictly off rolling, but I definitely think the school were putting their interests above the needs of the child.
And just from conversations with the school : ‘you know we don’t have assistants here to support SEND children’, ‘we can’t fund this’, your child has a ‘tiny squeaky voice’, ‘he just sits there not taking on instruction’ (this was untrue as he was repeating all his phonics lessons at home) ‘parents don’t normally see evidence of intervention work’, a 6 month (unlawful) delay is ‘normal’ so your son’s provision is not in place, DS being allocated to a young, inexperienced parent helper’s group on a school trip and getting left behind in the toilet…
It’s been pretty awful since he received his EHCP. The school didn’t want to place him, they are defensive and dismissive and see me/DS as a headache.

He is happy, quiet and vulnerable. They get approx £16 000 per year to fund his needs, he sees little of what the school claims they spend the funding on because he is not demanding and can be easily overlooked.

So if this is his future of schooling with an EHCP, I am very, very sceptical about whether a diagnosis or label is working in his favour. Two children have also been excluded from his class (one this year, one last year).

Because diagnosis is complex with various parts to it that over all has to meet a threshold of significant impact to life.

Actually, I have some sympathy with this viewpoint. We attended an OT workshop with other parents of autistic children, some of which were non verbal and still in nappies at 5. Others were very much like our situation, dc with emotional dysregulation, sensory processing difficulties and a degree of school avoidance due to a host of other unseen issues that cause panic attacks and anxiety.

At her worst, we have been on our knees, but on the whole we definitely feel comparatively 'lucky' that she (mostly) functions day to day and can largely communicate her needs. The biggest issue for us has been deterioration of her mental health as a result of undiagnosed ND and unmet needs in the early days. Once we understood it all better and her mainstream school was supporting her, our lives became easier.

I think, though, that the issue people have with the term 'high functioning' (I've used it too) is that many autistic people can appear high functioning, until they're no longer functioning at all due to shutdown. This is definitely our dd. At her worst, at just 6yo, she lay in bed naked refusing to eat and pulling at her hair because it 'annoyed' her. It took weeks to get her back again after that episode, but to look and speak to her now, you'd never know it.

But then she has a total meltdown at the local park because she's been playing in the water play and has become distressed because she has no change of tshirt or a towel, and hates the feeling of the wet clothes so much that she can no longer think straight. She begins yelling, screaming and hitting. Eventually you manage to get her to the toilets and spend 30 minutes with her under the hand dryer and you remind yourself that this isn't normal for an 8 year old after all. And yes, I should have been more prepared at the park! That's our life - daily considerations and a succession of 'plan Bs' just in case we encounter an episode like this - and we don't always get it right, nor can you plan for every eventuality.

True, but that doesn’t answer my question though.

Thank you, it’s a good example of how ‘high functioning’ can still have a significant impact. But I don’t think thank precludes us from saying she has less severe autism than those in the group who were non-verbal and still in nappies.

For further context to my question I have 2 kids with ADHD though only one on medication - I would consider that a more severe form. One also has autistic traits but not so severe as to meet criteria for a full ASD diagnosis, although we could probably push for this if we thought it would be helpful. So it just makes no sense to me to have such a binary approach and suggest one autistic person cannot be less autistic than another.

@KabukiNoh

I agree with you. I think there tends to be a very dogmatic attitude around ASD, and people very willing to tell you that you are wrong, it’s too complex for you to understand, you shouldn’t be questioning, you’re making no sense, how dare you suggest that etc etc.
For me the criteria is broad and subjective, and I think this can lead to assumptions and generalisations.
My son’s paediatrician drew three circles on a piece of paper for me of areas where she was looking for evidence.
1 - speech and language 2 - social interaction 3 - repetitive behaviours and fixations.
She said there was insufficient evidence for the third area so didn’t diagnose.

No, me neither, personally - it was more an example of why some may object to the term 'high functioning', because it may erroneously imply that they therefore face no/ few challenges. Of course it's not the same as a child who has extremely limited ability to communicate, but neither is it necessarily accurate to describe is as 'high functioning', since every day she meets multiple challenges that can throw her off. My dd's autism is definitely less severe though because, with ongoing help, we think we can arm her with the necessary strategies to function well in society.

The way I see it, with the increase of self identifying movement, the whole discussion around ND became increasingly more binary and (ironically!) rigid while diagnosis is not a 'yes or no, you either have it or not' process.

Whether you call it a 'variance' or not, these are still identifiable disorders/illnesses that have disabling side effects.

Having, for example, postviral ME and not calling it postviral ME doesn't make a sufferer feel any better - in fact it's worse because there's no explanation, no community, no understanding, no coping skills.

I was diagnosed late with ADHD. Before, when I thought I was just (and was called) useless, lazy, a daydreamer, immature - that didn't improve my functioning. I was frustrated that I wasn't able to 'just do things' like everyone else, and had no self-confidence. I was only able to improve when I was given the correct medication and find a community of people who shared support and coping skills.

Finally, no one is forced into a diagnosis or treatment. The criteria for a disorder includes impairment in functioning. If there's no impairment, there's no diagnosis.

But then she has a total meltdown at the local park because she's been playing in the water play and has become distressed because she has no change of tshirt or a towel, and hates the feeling of the wet clothes so much that she can no longer think straight. She begins yelling, screaming and hitting. Eventually you manage to get her to the toilets and spend 30 minutes with her under the hand dryer and you remind yourself that this isn't normal for an 8 year old after all. And yes, I should have been more prepared at the park! That's our life - daily considerations and a succession of 'plan Bs' just in case we encounter an episode like this - and we don't always get it right, nor can you plan for every eventuality.

I remember this - constant trying to plan and ancipate problems and carrying so much stuff round with me - as Dmum had - and getting piss taken out of me my MIl for doing so.

Made me remember the great beach debarcle we had - moved nearer to sea and envisgsneted days at beach - had manged kids at beaches before but IL in mix making every thing twice as hard triggering kids - we rearly go to nearest beach though kids go as teen with mates and have fun.

Made me realise how many really bad experiences haven't been the kids issues as such but schools and wider family being completely and totally inflexiable sometimes coming across as almost goading - we know this is an issue but they need to suck it up - when they could easily just have avoided it entirely and then resulting meltdowns and fall out is blamed on us parents or the kids.

I can really relate this to this, our situation with 9yo dd is very similar. And I also am inclined to agree with @kabukinoh It seems it would be better and surely possible to have a terminology that makes some distinction between such different experiences of autism, without losing sight of how a lot of the experience of being autistic can be hidden, or less obvious from the outside. I know we stopped using the term 'Aspergers' for good reason but it feels a pity we didn't replace it with another term to make a similar distinction.

Jerry Seinfeld years ago said in an interview he thought he might be autistic but then had to row back because parents of kids who were really disabled criticised him - understandably, they were angry with such a 'successful', independent person claiming that identity. But he still could be autistic of course. There needs to be more terminology to capture the differences

But you don’t know how much is down to learning difficulties or how much support tjose who present differently are having or how they are at their worst or how they will be. You can’t just look at autistic people and make decisions about people you don’t actually know.

Again true. But still you have not been able to answer my question. Agree one should not be making assumptions about (autistic) people you don’t know. But their families, or the person themself, probably could make a reasonable judgment and consider they may be more or less autistic than another autistic person they know well. 🤷‍♀️

Yeah I kind of thought this way for years didnt get my mental health sorted properly and ignored the da t that I have raging adhd
got to the point I wanted to off myself every day and let it get worse and worse until I could barely function and woukd work look after my daughter and cry every day
until I woke one day accepted my issues got a diagnosed accepted I needed to medicate (which I never believed in) and now I have a quality of life and it has saved my life. I just think this kind of attitude can be very dangerous for people who are poorly and will maybe read that view feel ashamed and not seek help! We are in an age where we have awareness and support. Why do we feel ashamed? Why does this Suzanne care so much that people might be getting the medical help they need?

@KabukiNoh

From a Guardian article :

“ It has become apparent, not just to scientists but to many in the community, that autism needs dividing into separate conditions, starting with the reintroduction of Asperger syndrome, as an important differentiator between mild and severe variants. Contemporary autism discourse and research are both skewed in favour of the verbally able autistic population at the expense of the most vulnerable and, with the growing popularity of the neurodiversity concept, this gap is sure to increase. “

@offnick

From AI :

Potential Consequences of Overdiagnosis:
Misguided Interventions:
An incorrect diagnosis can lead to interventions that are not appropriate for the individual's needs, potentially causing harm.

Reduced Access to Appropriate Support:
Overdiagnosis can obscure the real need for neurodevelopmental support, potentially leading to delays in accessing appropriate interventions for those who truly need them.

Labeling and Stigma:
A diagnosis of autism, even if inaccurate, can carry social stigma and have negative impacts on an individual's self-esteem and social interactions.

I’d say my son has definitely experienced misguided interventions. And then also stigma : resulting in the refusal of a school placement at age 4. My DS struggles with his speech - but verbalised “there’s something wrong with me” a couple of months ago. I’ve always gone out of my way to ensure he has good self esteem, is praised and celebrated for who he is - so where has that stigma come from?

But what about the huge in-between of severe and "mild"? I'm nothing like friends of mine who do hold down full time jobs, etc but I'll be lumped in with them even though diagnosis wise I have very little in common with them

I also read an article stating that if we continue diagnosing at the rate we are, what is currently considered neurodiverse will become as common as neurotypical.
I absolutely think that schools need to change to accommodate this.

My son’s preschool was very accommodating. They knew about PECS, widgits, now and next boards. There was excellent communication with parents and advice given : support services, links, agencies and websites to check.

My experience of mainstream reception was the opposite. No knowledge of PECS, almost a ‘fear’ or not knowing how to use it, the book was abandoned after a few weeks (despite subsequent training), a SENCO who avoids me and has used outdated language (e.g the term handicapped) - and has been extremely hostile when I asked to see evidence of his SLT targets being implemented.

While I think funding would help, what absolutely needs to happen is HOW funding is being spent. Much as in Maslow’s Hierarchy of Needs, basics must be supported first : supporting the needs of the children in your local community. Before spending thousands on the latest shiny new IT accessory which becomes obsolete or broken within a couple of years.

The focus needs to be on NOT excluding children and meeting individual needs.

Schools need to change to accommodate more neurodiversity : not children being told they are ‘wrong’ or ‘need to change’ or ‘we can’t support your child here’.

@TigerRag

I think the issue there is the ‘lumping in’. A school or organisation or workplace is highly likely to have employees who are not qualified to understand sufficiently, apply their own stigmas or seek to put the needs to their organisation above the needs of the individuals within it.

A ‘label’ is there to - hopefully - support the needs of an individual, but in my case - I think the label was used as attempt to exclude without proper justification.

I think more specific definition within that label could help and a label that is too broad could lead to stigmas and misunderstanding.