‘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

In regards to ME etc there are new breakthroughs all the time. Just because she doesn’t think much of it doesn’t mean anything. Long Covid research has greatly aided POTS and ME research. There are do sure mental aspects as in many diseases we are learning of feedback loops that reinforce things. Doesn’t mean it’s to be dismissed.

Any discussion about ASD and ADHD inevitably spurs comments about parents pushing for a diagnosis, and IME this isn’t really true. It’s a clear symptom of an education system that’s failing thousands of children.

As for my adult diagnosis, there was input from my mother and sister. Where possible they do need corroborating evidence, but obviously as adults we may not have people in our lives able to do this. I would say though that i dont anyone diagnosed who doesn’t come across as obviously (to me) ASD/ADHD, but there is a thing where those of us on the spectrum recognise our own. NTs would be very unlikely to seek a diagnosis.

NTs are notoriously shit at recognising ASD/ADHD and would far rather assume and assert that we and our children are defective humans, this happens at school, with families, anywhere really, and leads to young people with these conditions often feeling disempowered and stuck in a victim mentality (as a pp mentioned), as that’s how they’ve been conditioned to behave, and we often feel like we have to be apologetic for taking up space. It’s shit.

My diagnosis has led me to being the most confident and empowered that I’ve ever been, because I can understand now why certain people have treated me badly in the past, and have been able to reframe several dark episodes of my life, and have developed much healthier self esteem, and trust my instincts better when people are dicks. I hope more young people can find this for themselves, despite the way they are often treated that leads to their poor self esteem and mental health.

As for whether they are disabilities - currently society is disabling far more people than necessary. Schools, by piling on pressure and sticking to rigid standards and not adapting to the changing population, are disabling thousands of children. I would bet good money that a change in approach would necessitate far fewer diagnoses.

But yeah, let’s carry on blaming those trying to navigate this really hard life we’re living right now.

I absolutely agree with this ^
Also there are a lot of factors at play why we have increased numbers with certain diagnoses and genetics might be a part of that.
Getting a diagnosis is helping people to understand their differences and difficulties, to approach them correctly, not to feel guilty about their parenting or past behavior.
I bet the author doesn’t have a child with ASD or ADHD so it’s all theory for her. I would also love to know what of her own or her loved ones health issues she’s chosen to ignore and hasn’t sought any medical help for them (as you can’t have medical help without understanding what it is - therefore without getting a diagnosis).
Yes, let’s have a conversation but open and honest - she is lucky that she doesn’t need any of these so it’s easier for her to say “ let’s stop getting a diagnosis as it’s not helpful”. She needs to check her privilege.

It’s like to have enough food and telling someone who is desperate that a bit of fasting is good for health.

It says in the article that tests for the BRCA gene can show as much as 96% false positives...it doesn't reference this information? Does anyone know if this is accurate?

I also agree that life is also far far more busy and stressful, and full of information overdrive, which causes kids with ASD/ADHD to fall off the wagon far earlier than they may have, or have not done back in the 80s.

I fell apart at sixth form. I can absolutely see it now in hindsight, with the benefit of diagnosis. I do wonder how my life would have gone if Id been able to have some help.

My kids managed to the start of secondary school, both overwhelmed completely and unable to function, but both in different ways.

It’s like to have enough food and telling someone who is desperate that a bit of fasting is good for health.

Absolutely bang on @pizzaHeart!

Parents aren't seeking out diagnoses of neurodivergence for their children for shits and giggles. It is a hellish journey, littered with lack of empathy and understanding, faux-sympathy, patronising head-tilting, and offers of parenting classes. We do it to try to gain an understanding of our children for their benefit - so that they (and the people who love them) are able to advocate for themselves in a world which isn't set up for them.

Also I do love the analogy with how it was in the 40s! As if everything stayed the same and just the amount of children diagnosed with autism increased.

Many of the private diagnoses are for low income families, who have been kicked back, often because teachers lie on forms and in assessments (have experienced this myself), but are 100% sure that something’s going on, often because it runs in families.

So there’s a bias because we’re pressured to seek a diagnosis or there’s no support (even though we’re told otherwise).

Most private diagnoses go through paediatricians and psychologists who also work for the NHS, it wouldn’t be in their best interests to diagnose a child falsely.

At the end of the day the problem relates directly back to schools who are unable to support children effectively, so more and more children are struggling. Fix it and you fix a lot of societal problems.

Many of those "middle class, late diagnosed" with ADHD/Autism will be parents of children who have received a diagnosis, and have realised during the assessment process that they probably have it too. As do/did their siblings, parents, grandparents and so on way back up the family tree.

The parents of children with ADHD/ASD who are not in a position to seek a diagnosis privately for themselves, and who struggle to engage with schools, fill out the complex paperwork and attend multiple appointments are no less likely to be neurodiverse. Just less able to access help.

So I wish people would stop criticising people in a position to seek help and look at how to help those that can't.

This is a really appalling statistic.

This evidence includes statistics that 20 per cent of clinical work in the UK is thought to have no effect on outcomes, but costs the NHS billions.

often because teachers lie on forms

Working in education a long time, I see very little of this.

It's far more common for teachers to write truthfully on the forms exactly what they see in school, which could be the child masking.

Well either I live in a highly unusual area or the statistician who informed the author that 1 in 100 children have autism should resign in disgrace, as around here it’s more like 1 in 10. There are 4 in my kid’s class of 28 children - 1 in 7. And more are awaiting diagnosis.

We already know that over diagnosis of cancer leads to poor health outcomes. It is not surprising that over diagnosis of other medical conditions would have a negative impact.

I found it fascinating, and much of it made total sense.
It's long been known that there is over- diagnosis of cancers via screening, and yet many people still persist in thinking screening is the be all and end all.
Wouldn't it be nice if people were just generally less obsessed about their health because, tbh, it is a pretty boring topic!

In some areas of the country 25% of children have an SEN diagnosis. 42% of pupils at private school get extra time in their exams. 42%!!! So I agree with her.

But, with the greatest of respect, virtually everyone thinks they have it. If you messaged all your friends asking ‘Do you think you’re a completely mentally typical person?’ Most would reply ‘No! I’ve always felt a bit different, and like other people make life look so much easier’. Hence thousands upon thousands of likes on those Insta posts about ‘feeling ND because I need downtime after a heavy weekend of socialising’. Social media has sold us an image of what is normal, which is to be highly sociable, organised and calm. So everyone thinks if they’re not then they’re ND.

That caught my eye as well! But note she said "commercial" tests, so I assume she means those kits you purchase yourself for home use and send off for results. (Not done thru a clinic).

Yes, sorry, masking is a big thing.

There is obstruction that happens a lot though.
My son’s HT refused to let his teacher fill in the form and did it herself, claiming no issues. Ditto during his assessment. His teacher who spent every day with him (and hated him!) didn’t write one word of his report.

His report read really oddly because the SALT assessment, Paed assessment and parent input all matched, then the school report described an engaged child with no support needs at all. I’ve seen many such reports from other parents, from different schools, where the child and their typical behaviour in school doesn’t match the report at all.

Then we’re told this doesn’t happen. All the time. Gaslighting is rife towards parents of SN children. I get it, managing rising SN is hard, but lying and denying support alongside the pressure is creating a huge problem for children now and for the adults they will become.

Yes. Not every cancer requires treatment. Many people can live happily for years with cancer, and they die with it, not from it. Unfortunately, screening can lead to unnecessary treatment, and the ancillary stress and anxiety. Many doctors will tell you that, and have been saying it for years.

Do those stats take into account the number of independent special schools which will all presumably have 100% extra time?

it could be a simple explanation for this - in my area there are schools with zero SeN children and with many- schools have certain reputations and parents look at experience of others before applying.

Adverse childhood experiences. So things like death of a parent, bullying, serious illness or disability ,sexual abuse or harassment, domestic violence, witnessing conflict of war, crime, deprivation , neglect, poverty, racism etc.

The trouble is even just having one or two ACEs can cause trauma. A white British child from a middle or upper class home whose only ACE might be sexual abuse or an alcoholic but high functioning alcoholic holds down a job parent who's never violent, will still develop significant complex trauma and may need as much help as a child of immigrant parents living in a high crime area whose single mother is on heroin and has multiple boyfriends coming in and out.

I was bullied constantly at my primary school, some of it severe, most of it low level. My father was unstable mentally and abusive, I was sexually abused by more than one person. I suffered ME/CFS for years after a virus floored me in my early adolescence and struggled with a mild learning difficulty (dyscalculia) at school, for which my father punished me. I was from a lower middle class comfortably off family, both my parents lived together albeit my mum was terrified of my father, and nobody would have any inkling anything was amiss in our home. Parents were churchgoing Christians and in spite of my fathers mood swings and paranoia he held down a steady career.

I'm coming towards the end of a decade of therapy for the complex trauma and associated diagnoses arising from it. I have been very privileged in my life compared to those who have experienced poverty or substance abuse at a young age, and on paper , I actually had it pretty good, I guess, compared to many kids, but the abuse and bullying and long term illness has done a number on me. I almost ended my life, more than once and have had an ED since a young child, I'm hugely obese now as a result.

Our isn’t the school with a SEN reputation, I know the one that is.

Children are anything between 50 and 100 times more likely (depends on the study) to be diagnosed with ADHD if they are born in July / August in countries where the school year starts in September or if they born in November/ December in countries where the school system starts in January.
How can that be? How can a DIAGNOSED illness correlate to birth month?

Suzanne O'Sullivan is an excellent writer and I assume her book has more nuance and empathy than the bits in the article. I really recommend Sleeping Beauties. It's fascinating.