‘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 think cases of severe autism (the non verbal kind) have massively increased, but the type which people had no idea about until their child was 12 needs through review as I think the symptoms are all tangle up with anxiety, depression etc.

Making is something everybody does to some level, it’s perfectly normal to have different faces you show to the world.

'their ‘brain is wired wrongly’.” All this feeds into an “illness identity”'

I don't think this is how the majority of ND people think. The majority push against it being an illness/disorder and see it as being wired differently not wrong. I think the increase in diagnosis is actually helping us see it more as a difference rather than an illness.
I also think, from experience in health and social care, a lot of people who have mental health issues and social issues as adults are ND and had that been recognised and supported when they were children that they would have had much better outcomes.
The article refers to parents not accepting their children aren't geniuses. It it is the education systems that expects all children to fit into a box and learn at the same rate in the same order. I think if that was to change we would have a lot more people doing well in life. Instead those who aren't good with maths and English and learn it in the typical way at the typical time usually have their self-esteem and confidence damaged through the education system when with the right support they could do amazingly well in other areas and have a successful life.

I remember a multi disciplinary at CAMHs where I spoke at length with the psychologist, and he was of the belief that the overwhelming majority of children diagnosed with with ADHD had suffered ACEs and this is what triggered it. He was very concerned that we were starting to medicate children living in chaotic families with very powerful drugs before trying to deal with the environment those children were exposed to.

The thing is, a child with ADHD has more than likely inherited it from one or both parents. The parents' ADHD is what is leading to the chaotic family life, and the child's ACEs (adverse childhood experiences) will be caused by the parents' ADHD. It is the parents that need help/diagnosis first, then the children, otherwise the whole thing becomes generational.

But the science to suggest they’re wired wrongly is fairly tenuous, like with gender identity.

Having been through several psychiatric assessments, both NHS and private, to work out what the bloody hell was ruining my life, I think the increase in diagnoses of certain mental illnesses and NDs is directly down to the airtime those conditions get online and everywhere else at the expense of other diagnoses.

There is a massive amount of overlap between some diagnoses and they should be diagnosed over several sessions with the same clinician, a range of information, and ideally another informant who isn't the patient.

Unfortunately, that's not how a lot of places (NHS and private) operate. They don't follow the correct diagnostic procedure, they don't use a structured interview, and with the private ones, when you book an assessment for a specific condition, they're looking at that condition in isolation of any others (nor do they consider two or more conditions that can produce the same symptoms and then some).

This sort of nuance is becoming lost and I think that's why inexperienced clinicians who are only looking for ADHD or ASD find what they're looking for instead of keeping an open mind. I had about 6 differential diagnoses ("maybes") and it took 4 years before I was definitively diagnosed with ADHD and bipolar disorder in 2015, and over the years of diagnosis and post-diagnosis I've seen a massive shift from "maybe" to a drive by clinicians to be certain immediately after a 1-hour session with a patient they've never met before, especially in the private sector.

I have that certainty now but others who don't are almost certainly being misdiagnosed and I don't think there's nothing at all wrong with them, I think they're not getting the right treatment because they're not getting the right diagnoses, and that's a real failing.

Also this article was very interesting about how they basically want to change how ASD/ADHD are handled by the NHS because there are just too many people with them now (I think a poster made reference to this upthread): https://www.bbc.co.uk/news/health-68725973

You cannot get DLA without a ton of evidence from relevant professionals - eg Paediatrician, GP, schools, support workers.

You can’t just decide you’re going to get it and hey presto! It just doesn’t work like that.

I don’t think it’s a case of ‘hey presto’ at all, but the success rate is 75% for both assessment and reassessment, so I don’t think it’s very difficult either. At present 1 in 16 children claim DLA.

It’s interesting how so many of the professionals who strongly feel ND is over diagnosed (1) don’t undertake assessment so haven’t been trained in them to know how exacting a good assessment should be (as per NICE guidelines) (2) work at a high level with input from admin and nursing staff to support their own organisational needs (executive functions) (3) exhibit black and white thinking on issues. (4) seem to find discussion around their views challenging and react defensively, almost like experiencing rejection.
There is a one particular ‘expert’ who publicly argues against ND labelling who clearly may be ND themselves from how they behave. But they fail to acknowledge the ‘privileges’ which have helped them cope with the associated challenges ND brings, and at the same time expect everyone else to just cope too.

I know I frequently see reels on SM about ND traits and I always identify with at least half of them, sometimes all, but am not ND (to my knowledge). So I can completely see where the article is coming from, there is a trend towards medicalising normal, manageable behaviour.

Exactly 💯 this.

As my hero Michael J Fox always says, "Listen to the patients, they know their bodies and symptoms best."

This couldn't be more true with regards to the conditions like i have (a medication induced neurological involuntary movement disorder called tardive dyskinesia). I do think that some people are more empathetic than others, but some just seem to have no understanding whatsoever about how much certain health issues affect people as they haven't been through it themselves.

I find some close family members are like this with my health problems..

I'm in agreement in some ways that certain disorders or conditions are possibly overdiagnosed, but I think equally there were many children at my school when I was younger who definitely had something undiagnosed like autism or ADHD. But of course, 30 years ago, they were labelled as naughty children.

Parents are always at the GP with the children and not sure how to word this parents are very good at putting things into the children's heads.

Having recently been diagnosed myself by a very reputable clinic, I was told that if I didn’t present with significant likelihood of diagnosis after the first 2-3 hours of testing / surveys etc, they would not proceed with the rest of the diagnosis. They would stop, say it’s unlikely and not worth progressing and refund the relevant portion of the fee I had paid.

Just offering one suggestion on why the majority reports which are produced may all appear to be confirmed diagnoses. Equally, I’m not saying that all clinics would do that but this is a relevant point.

Likewise, those who are willing to pursue this (particularly privately) are more likely to be pretty sure of the outcome and able to evidence their level of challenge / impairment, to justify paying privately for this. No one likes to throw money away.

This is all really interesting. I have an adult ADHD diagnosis and, like a lot of people, didn't get it until my DD was diagnosed. I think because a lot of women present differently from stereotypical symptoms - the H often seems to be missing - and because we can be very adept at masking, it's easy to miss. She wasn't diagnosed until her first year of uni when things went off the rails for her. At that point, a lot of things about my own life suddenly clicked into place.

Funnily, for both of us, there are some ways in which it has probably been an advantage - she's a first year doctor and I did very well in my chosen career, I think because being able to hyper focus on things that are of interest can be valuable. Also, having a somewhat chaotic mind can be helpful when multi-tasking and juggling family/work/life.

For what it's worth, I did have trauma from an ACE (sudden accidental death of a sibling) but also had a stable and loving family, DD had no ACE.

It hasn't made a huge difference in practice for either of us, but it was really helpful in allowing us to put away some very ingrained patterns of self-blame - for all the notes intended, but not sent; forgotten diary entries or things that should have been entered but never were; inability to concentrate in maths (me, not DD); lost phones; lateness; procrastination.

I once joined a Facebook group of parents whose children are autistic and had to leave because it was aggressive and woe betide anyone who disagreed.

Horrible experience.

My family carry the BRCA gene. I was screened and it was negative, my siblings were the same. Some of my cousins got positives and more got negatives. I don't know what the figures are but our experience wouldn't seem to reflect 96% false positives. We didn't have private tests.

Also I could say lots more but it would be really outing for my friend. Stuff that is sickening.

More evidence than just a GP is needed for DLA. In fact, DLA doesn't generally like evidence from GP's as they don't usually spend a lot of time with the child.

So there is a great need for research into why so many children are coping so badly that they are disabled.

I’m guessing that the rise in numbers is similar to the rise in schools, and not in physical disabilities.

Something’s gone badly wrong, we should be looking for reasons why and fixing it, rather than constantly blaming people.

Reading between the lines perhaps you should be reporting to SS?

JoyousGreyOrca

"everyone" may well think they have it. It doesn't mean they will meet the criteria for diagnosis"

Pay privately and you suddenly will.

The service I work for has a diagnosis rate of around 75%. Yes, that's high, but people don't typically shell out around £1000 on a whim. (Higher for ASD or combined). They look for diagnosis because they know they have traits and are seeking answers.

Although there are dodgy online services that give out diagnosis (and meds) without doing thorough assessment, good providers do comprehensive assessments using a team of multi-disciplinary professionals. Many also provide assessments to the NHS and employ staff who are also employed in NHS services.

It is probably also worth explaining that, of those who don't meet diagnostic criteria, for many, this is due to a differential diagnosis, rather than the absence of traits and difficulties.

surely the most interesting question is about what a diagnosis DOES.

DOES it actually make anything better?
Are we sure there isn’t evidence it can make things worse?

we have lots of diagnoses in our family. I am far from sure they have all helped us, even though I also don’t doubt their accuracy.

I really can't say anymore apart from my friend knows that the children are being kept and eye on.

Local Authorities dont diagnose ND conditions, thats CAMHS

Most adult assessments have an initial assessment that, if passed, means you go on to the full assessment. So most people being assessed have likely already shown they meet the criteria by passing that assessment.

Not everyone gets past that first stage. I don’t know how to find statistics on that though.

This applies to children’s assessments too, private or otherwise, so there’s a high chance of autism just to meet the criteria for the assessment in the first place.

Hell yes.