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

Yes let’s talk about something less controversial, like long covid.

That’s not how diagnosis is going to work any time soon, if ever. Even neurodegenerative disorders (various dementias) are primarily diagnosed on clinical presention and rating scales. It’s nice if a brain scan supports the diagnosis, but very often it doesn’t. No one is going to implement expensive PET scans routinely for autism diagnosis.

ASD, ADHD etc are neurodevelopmental conditions and so it’s expected that there will be structural or functional differences even if these are so complicated or heterogeneous there is no one pattern. The author doesn’t discount any neurological basis, just correctly states how these conditions are currently diagnosed and will continue to be for the foreseeable future.

I’m not referring to her book there, am I - I’ve moved on and was referencing the research I linked earlier (after reading the chapter in her book on autism/Poppy’s story) and stating how I personally feel diagnosis should work… I don’t reference the author at all in that post.

Is this a true story? It's awful. I had soap rammed in my mouth for repeating a swear word heard directly from the mouth of my parents. I don't call that bad behaviour. I call the parents imbeciles and in need of education and better tools.

Swearing really is a big ' thing' with every ND kid I know. I have no idea what it's about. It's difficult but hilarious at the same time.

My son is PDA. It takes another level of parenting really. You really can't attribute behaviour that's common in PDA to poor parenting.

It's a really tough balance though because there's a place here for letting go of some really ridiculous rigid rules and a need for control that we do impose as adults, but there's a need to ensure accountability and helping develop someone who can get along and get by in society. So both things are true so to speak.

@Bowies

No - I don’t see it as a ‘fault’ either. I see it as addressing individual needs.

The difficulty I have faced is that the school has seen DS’s needs as a ‘fault’ and attempted to exclude him.
This has made me question whether there is a ‘fashion’ for convenient labels to define children’s needs. Whether these are potentially detrimental - rather than putting the onus on the adult to address the support they are putting in place to meet a child’s needs.

@NeverDropYourMooncup

Why is inadequate parenting considered ‘taboo’ or ‘outlawed’ in preference to seeking diagnosis for a child?

A scenario. A child who misbehaves and and swears is told at a young age that if he swears again ‘I will wash your mouth out with soap and water’. Parent is a lawyer. Has had an extremely privileged upbringing where considering the needs of others above their own has never been a factor. Parent struggles immensely with the empathy required to put their child first. Parent seeks diagnosis. Child is diagnosed with ADHD, PDA and ASD. Parent now sees this as the reason for the poor behaviour in the child rather than addressing their parenting skills. Child’s behaviour is not improving and they no longer attend secondary school.

Why is it never a possibility that parental input is at fault? Is it always the child’s diagnosis that is the reason for the difficulties faced? What impact does that have on the child?

Every word of this.

True, but it is promising and there have been additional studies - I am just frustrated that as a neurologist the author didn’t consider broader research (to which she would have considerable access through her institutions and colleagues/network) but chose to go down the route that [paraphrasing] autism is merely a deviation from standard accepted societal norms in behavioural terms and do we need to need to pathologise it? TBH I think there is a middle ground, I think understanding that there is growing evidence that it is a neurological disorder that may be discernible on scans but that society would benefit by being more adaptive/compassionate/supportive/inclusive of all types of individual difference is where we need to be aiming.

‘Diagnosis’ should therefore be more about ‘identification’ of cognitive/ neurological styles, in the way we don’t ‘diagnose’ shortsightedness but actually define vision parameters in order to equip an individual with the right prescription glasses for their daily needs.

Not sure if that makes sense, but the point is that I don’t think ‘over diagnosis’ is the issue, its the expectations surrounding them, the expectations and emotional impact that flow from it that we need to fix?

Those functional MRI findings are interesting but the authors acknowledge overlapping results between NT and ASD groups - and it's a study with 2 groups each of 13 people which is tiny (as are many imaging studies). Seeing possible differences on research MRIs between groups does not mean that a scan can be used to diagnose an individual. For a test to be diagnostic it had to robustly identify the condition of interest with high sensitivity and specificity - this research does not do this. We are a very long way from having any objective test for ASD.

I don’t think France and U.K. are easily comparable, they are not like for like populations IMO.

Agree mental health is poor in the UK but it’s not caused by misdiagnosis.

In your later posts you speak about ‘fault’, I don’t see it as being a fault of the DC that their brain works differently.

Regarding a teacher mentioning ADHD, it’s valid as a consideration among others, but was only a suggestion and they are not qualified to diagnose.

A doctor would have to assess and agree to make the referral. Even then DS (2+ years later) would not have been diagnosed at the point of the specialist assessment if he didn’t meet the diagnostic criteria.

I really can’t see how an ADHD diagnosis would logically cause a parent step back rather than forwards with more awareness and therefore confidence in parenting. I’m not sure why you think that would or should have been your response if your DS was ND.

I also can’t see a downside for the child to gain awareness and learn strategies to support them.

@limecola yes I'm definitely open to another perspective. And private companies really are profiting because the NHS is withdrawing.

I have wondered the same thing and while I'm not saying it's impossible some people who self-diagnose as ND are mistaken (though I'd guess for most it only resonates if you actually are), there's no obvious incentive. It still comes with a lot of stigma and ignorance and misunderstanding.

The day of dd's asd assessment (the face to face bit, which followed a lot of form/questionnaire filling by us and her teacher), I was talking to my sister on the phone. She admitted believing that a lot of the time children diagnosed aren't really autistic (though she didn't give a good reason). I made this exact point @frozendaisy - why on earth would a parent do that to their child, and that's even making the massive assumption that assessing psychologists want to be and somehow can be complicit in such a scenario - and her reply was 'Well, is there money in it?' I was so shocked, I don't even know what I said. It is one of the most hurtful things anyone has ever said to me. I'm so sad about it and yet i can't see our relationship properly recovering from it, it's hard for me to chat normally to her since then. Some people just seem so hostile to it, and I genuinely don't understand why. Like it's a threat to them, but how can it be? It's not like it'll hurt them if another person gets a way of making sense of their experience of being alive that allows them to be kind to themselves and helps them to flourish. I mean, what is the problem?

I mean I can see why some may need reevaluating in the case of varying symptoms but surely we aren’t going to question every diagnosis given by an actual professional?! Who’s to say you should believe one person over another?

@Pleaseshutthefuckup I have ADHD and Dyspraxia both diagnosed after being referred to test while at university over a decade ago now, previously I was diagnosed with dyslexia in primary school.

I am not sure that its as simple as that. I do think that due to messaging online and via social media many people do start to worry that things that are normal are not and that they are somehow defective and will never ok without help and or medication. This is compounded by certain stressors and behaviours in modern life than can dysregulate anyone.

People feel intense pressure to achieve while life is increasingly precarious for many and distractions abound. Difficulty with mental health issues, the false perception of what others lives and successes via social media means people feel like failures and are looking for answers and adhd or autisim can seem like that answer.

I am not saying anyone isn't what they are or are diagnosed with or that they are lying for preferential treatment and benefits, it isn't that simple but it also isn't far fetched to think that their are private companies profiteering off of peoples anxieties and search for answers.

Excellent questions.

And the only 2 answers you will get to these questions, as witnessed regularly by myself on MN threads is ....

' cos they just want the benefits '

OR

' just want an excuse for bad behaviour

True, I had a NT flatmate offer to buy and then eventually help themselves my adhd medication while I was a student. They were prepared to take that risk because the benefit they got from the medication was so great.

I know it is said by many with ADHD that a NT person using stimulants will not feel calm focused and so on but wired and unable to focus that is simply not true.

I don't know if a non adhd person could be diagnosed and then access the medication but I can see the possibility and the temptation because access to this medication offers a huge benefits to people in terms of work, study and even weight loss.

Personally although I had a legitimate diagnosis and reason to use these medications I did stop using them because they were triggering migraines, I felt I was more productive but much less creative on them and I was increasingly concerned about the long term risks to my health.

Yes, yes we do. Or we should if it is warranted and especially if there is no absolute medical cause that can be proven. She talks about all range of conditions in the book. Not just ND.

Do we question every other diagnosis'? After all there’s quite literally hundreds!

I read Temple Grandins book and she cites these types of studies also. I recall some impressive scan images in her book with demonstrable differences apparent.

Gaslighting is cheaper and easier and the public are easily zombified into compliance and false narratives.

I do wonder why people like this lady go out their way to be somewhat naive and perpetuate something that feel inaccurate on the surface ( I haven't read it to be fair).

I think it's arrogance alot of the time. I've encountered many neurologists and my thoughts were that they were imbeciles, with opportunity and power, in all frankness. Of course that's a huge generalisation and not all will be such.

@NeverDropYourMooncup yep 👍 👏. In my case we had a few CF behaviours in between and in addition to your spot on list. Forced in my case to go private and refused outright any access to an assessment. Child has THREE ND condition FFS.

School still falling over themselves to blame everything but being ND.

Have we moved on from the ' refrigerator mother
c*fuckery' theory?

I'm sad to say that parental denial on father's side can very often feature in these scenarios and play directly into the hands of the gaslighting systems.

In reality, it's frequently

1. Find Fault with the Mother. Generally that it's all in her head.
2. Find Fault with the home environment (see 1.)
3. Find Fault with the child (see 1. and 2.)
4. Find Fault with the school being unable to make the child behave (see 1., 2. and 3.). The School finds fault with the parent and child (see 1., 2. and 3.)
5. Find Fault with the Father (due to the Mother's choice of partner - see 1.)
6. Find Fault with the Mother for not accepting the brush offs, dismissals and blame (see 1.)
7. Eventually, reluctantly refer.
8. Act all surprised when child is diagnosed as ND because the Mother never said anything/they're fine, honest/it'll be a label and we hate labels from A Level Sociology in 1992
9. Deny any Fault in the school environment (see 1 - 7)
10. Decide cannot meet needs/can't afford it and Fault therein lies with the child and parent for being awkward (see 1 through 6)
11. Start all over again in every aspect of life with 1. being the default assumption, supported by 'experts' who spend their careers telling people it's in their head, so is also 3.

It's only when forced to conform to continued societal bullshit that it's a problem or a fault for many.

It's devastating watching the turmoil for many kids caused by one thing; a bloody archaic ridiculous school system designed only to re enforce a conveyor belt of automaton workforce zombies.

The more I learn, the more I see Neurodivergence in the greatest minds ( I'm not undermining how shit and totally disabling it is for many people btw. ). The systems we have just cause so much struggle and difficulty. And as the truth is becoming apparent regarding how common this actually is now, we have a political agenda trying to convince the public it isn't really much of a ' thing ', it's over diagnosed etc etc. It's all nonsense.

@BlueTitFly your post is interesting. This situation regards schools really interests me.

I went to a relatively strict school. Yet, we did not get detentions like they now do. It is in fact appalling what is happening and I feel making school for most, quite a miserable place.

My son is in the category where his ND status is quite obvious, it's quite a challenge. He sits somewhere between mainstream and a specialist provision but that place doesn't exist. He's in mainstream getting detention after school approximately every other day, every single week. For being late to a class, for not wearing the blazer in one class, for things related to his 3 ND conditions. I wonder how it would have been say 25 years ago for him. It's hard to know. He might have been in one of those specialist behaviour units 🤷.

It's tough for teachers, they're probably trying their best with all this.