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

EDS does seem to be behind so many of these weird issues. We desperately need the gene identified for type 3 ( hyper mobile) because the gaslighting and minimisation is really something else for many affected.

I totally respect any medical professional who says, I really don't know what's causing this. That would be better sometimes.

Yes I believe so. Literally nobody has said “autism and ADHD is solely down to poor parenting”

Nor have I read anyone say “all disabilities are in people’s heads”

If you think you’ve read that then I would suggest you’re missing the nuance

Are we reading the same thread?

Literally nobody has said that

Oh like saying that a protected disability is down to poor parenting. That distressing life changing conditions and protrcted disabilities are just in people’s heads. I see no well reasoned discussion just sheer ignorance and obsessed hobby horse posters.

It’s a real shame when a well-reasoned, seemingly balanced debate/discussion gets derailed by petty comments and accusations

@L00pl00p

If you think I’m being a ableist then report the posts. I don’t think you’ll get very far.

You don’t seem to be able to debate in a reasoned way so I don’t think there is any point in engaging with you any further.

@L00pl00p

Interesting that another poster said ‘oh it’s you’ - when trying to put forward their thoughts.
This is an open forum where people can post and be on whatever ‘hobby horse’ /stance they choose based on their experience.
If you choose to sneer, ridicule, belittle that’s up to you. But it’s certainly not going to persuade me to think your views are coming from a place of kindness.

There would not be a diagnosis without other evidence and traits. You don’t get a diagnosis just for being demanding or having Arfid. 🙄Do get off your hobby horse.

So your child has zero behavioural isssues- none. Ditto the child with several members of staff needing to be attending when he arrives- they’re just around because he has an autism diagnosis. 🤔

Sorry but you’re talking bullshit and blatantly scaremongering. Schools do not exclude simply on the basis of a diagnosis, ditto refusing EHCPs. Your little survey from your nosing into children you allegedly see does not know all the details.

An EHCP is a legal document, which means that the school named in it must legally accept your child and offer them the support outlined in the EHCP. If your child's school is refusing to take them, despite being named in their EHCP, you should speak to your local authority and seek legal advice.

No, schools cannot refuse to accept a child due to a diagnosis. While they may not be obligated to immediately provide support based on a diagnosis, they cannot deny a child admission or education based on it. Schools have a statutory responsibility to support pupils with special educational needs and disabilities (SEND) and should not wait for a formal diagnosis to put support in place.

I read this book, and also Sami Timimi's.
There were parts I was not quite agreeing with but overall I felt it was a really good summary of some of the issues with diagnoses from mental health perspective, although a lot of people will disagree. Timimi also writes about identity vs diagnosis which is a whole different (but closely related) discussion.

@Pleaseshutthefuckup in my experience, quite a few things are diagnosed by the absence of anything else. I've been diagnosed with vestibular migraines and mennieres disease and these are basically diagnosed by eliminating things like tumours causing dizziness.

There's so many things that medicine still doesn't really understand particularly around neurological disorders.

I'm also very likely to sublax various joints so have wondered about EDS but think I'm "just" hypermobile.

@NeverDropYourMooncup

When you receive a medical diagnosis, I believe this should have a positive impact on a person’s life. Better understanding, better outcomes, knowing how to treat an individual.
With my son, before he started school - and seeing that he was struggling with his speech I sought an EHCP and assessment for autism.

Before his reception school had even met him, they wanted to reject his placement and assumed he was autistic. They presumed he had behavioural issues, once I did get his placement they presumed he couldn’t take turns. He doesn’t have behavioural issues, he could read and excels at maths, he loves taking turns. His needs are mainly focussed around his speech. He ended up not getting a ASD diagnosis - but a speech diagnosis.

I’m shocked that a school could attempt to reject his placement. The school have now excluded two other children fro his class. One child has come to my son’s parties and I see him outside of school. I never see him misbehave, but I’ve seen absolute fear when he enters the school gates - only to be surrounded by 3 members of SLT, one being quite hostile towards him.
I know of 2 children who wanted their EHCP removed before application to secondary school (private) because the schools would not take them with an EHCP.
I know of at least 3 children where a diagnosis has led to some extremely poor parenting : letting their child dictate what they eat, whether or not they go to school, whether or not they do homework, using screens for a large percentage of the day etc.
Yes, I’m all for medical diagnosis if it has a positive impact on a person’s life - but if it leads to exclusion and poor parenting - then how is it helping?
You would hope that better diagnosis would be leading to less exclusions and better mental health - but I don’t see that happening? And with a SEND system in crisis - something needs to change.

I 100% think it’s the adults that need to change. I think something that is woefully lacking, and sadly I’m seeing this is schools - is compassion and empathy.
I think compassion and empathy was a higher priority in schools 20 years ago - rather than funding, meetings, computer based activities, members of SLT who are not classroom based and don’t know their cohort of children, exclusions. It’s definitely all gone a bit ‘Animal Farm’ in schools.

I work for a voluntary organisation where funding is not the priority (we just don’t have much money), there are no computers, no meetings while the children are in attendance, we all work with the children, and children are not excluded. I think a few members of the group could potentially have a diagnosis, but we meet their needs with compassion and empathy - and adults who love what they do/love the children.

Apologies if I'm misunderstanding your post, but when you say "people who don't appear to struggle as much" do you mean that high functioning autistic people do struggle as much as profoundly autistic people, but other people just don't see it because they mask?

@Smugzebra I should listen to this but will probably get very irritated.

I have a very fixed view on fibromyalgia and believe my viewpoint to be correct quite dogmatically 😆.
I have ehlers danlos syndrome, hard to diagnose, terrible lack of understanding and awareness and minimised by most medical professionals. This is potentially the real cause and not the non diagnosis of fibromyalgia.

A recent study demonstrated 50% of participants diagnosed fibro actually had small fibre neuropathy. I have that. It's highly associated with another notoriously misunderstood autoimmune condition called Sjogrens. Mast cell activation is another misunderstood condition causing high release of histamine which can cause burning pain and muscle pain. Again, I'd say that's more likely also.

So the people given this non diagnosis of fibromyalgia ( which doesn't make sense if you start quizzing professionals about what it actually is) in my strong view probably have one of the above.

That's one diagnosis where I'd argue all day as to how limiting and dismissive it is and therefore a ' diagnosis ' I would not want or ever accept.

It is really code in the medical profession for ' I don't know what's causing this so I'll call it fibro and can you fuck off now with these painkillers '.

Seeing as that happened to one of my brothers (and was nothing compared to the abuse that the three ND children received at her hands, by the way), I've got more than enough direct experience of inadequate parenting. Despite the many things that were undoubtedly down to her, it was not her fault that 60% of her offspring turned out ND, as 40% weren't (and it was 1 NT, 1 ND, 1 NT, 1 ND, gap - 1 ND, so nothing about age, greater or lesser parenting experience, more or less money - just genetics).

Same way that the NT offspring had NT children, the ND ones had children that were in turn diagnosed - but as parents, they were not inadequate, abusive or neglectful, they recognised the things that the children experienced and advocated for them to avoid the experiences they had at school - all the more important in their experience as a direct result of school being the relatively safe space compared to 'home'.

It's likely that a parent like that example is going to be enraged at the notion a child of theirs could be seen by others as being defective and refuse anything resembling assessment in favour of 'Why can't you be NORMAL?' and 'You just had to show me up, didn't you, you deliberately ruin things every single time, this is why nobody likes you', rather than going for an assessment and engaging with therapies or medication.

However, for your assumption that it would be inadequate parenting, I'd suggest that what actually happens is Mum is assumed to be depressed, anxious, mentally ill or potentially fabricating symptoms for attention/benefits. Particularly if she isn't obviously middle class in presentation.

Yes I have, and I listened to her on the podcast with a doctor ( I cannot for the life of me remember the name of it!!)

It's really interesting. Not sure if I agree or not...but interesting to explore the idea of giving a diagnosis and how that will affect a person.

In the podcast they mention fibromyalgia, something that cannot be objectively diagnosed as it isn't visible on imaging or blood tests... And they talk about the potential of getting labelled and then the tendency of some people to just give up and accept they cannot live a happy, productive life because they have this life long painful condition..it's all about what they cannot do rather than focusing on the times there is no (or less) pain... And the things that are achievable.

They also mention that in a lot of cases normal feelings and emotions, and behaviours...are pathologized (?) for example shyness is neurodiversity/social anxiety or bouts of sadness is depression when in actual fact they are just extreme ends of normal, human feelings.

I must admit if you search on here when someone posts that they are struggling with their child (naughty, Social problems, etc) there will always, without fail, be someone who suggests they are neurodiverse. There is nothing wrong with that, they may be right, but is it beneficial to just lump everything down to that and not try and tackle the individual "problems" as they crop up rather than just "ah lets give this a name and accept that this is how things are" Type mentality...

It's an interesting debate and worth a read/listen. I was surprised to hear that a lot of folk with parents with Huntington's choose not to test, but after reading the book...I get it.

Yes, getting the balance right is a never ending struggle. Autonomy is really important but can go too far and then you're doing everything a 5 year old demands.

I really do need to read the book before ripping it apart to be fair 😆

And this is something that also needs to be discussed.

There are misdiagnosis in all medicine fields, not because the medical practitioners do it deliberately, but sometimes mistakes are made.

Why is there suddenly a boom in social media and advertising for ADHD tests, take this test to see if you have ADHD, but you don't get an answer you have to hand over personal details, companies only do this if there is cash to be made somewhere along the line.

People calmly brushing off their own behaviour, as they did with, I have OCD I have to have all my cups colour coded, when you are thinking, that's not OCD is it really, that's just an excuse to be a dick if someone puts a cup in the cupboard where you don't think it should go. So the explosion of, if you can't handle life admin/chores you are likely ADHD, is swirling the waters for people who do have ADHD.

It's not just a misdiagnosis, there is the social watering down of truly debilitating conditions.

Having a whole bunch of private assessors willing to give you private prescriptions, ticking people off a list and sending them on their way with a bottle of pills and an ADHD diagnosis when there isn't the time or trained staff to consider other options.

The health service will do its best to treat any health condition it can, physical and some mental/psychological presentations, they can treat, especially if you can take blood tests, have scans, see something physical.

But the watering down via social media for some of some of these conditions should be a huge concern for everyone. We don't want a society where a young adult can hit a bump in the road and search online and be convinced it's because they have been misunderstood their whole lives.

There are increasing numbers of conditions that, at the moment, can't be actually tested for yet patients are insisting upon a diagnosis, and doctors are expected to come up with something. Patients are more informed, which isn't in itself a bad thing, but with that comes and expectation that something can be found and something can be done. And sometimes it just can't. But no patient wants to be the one who is told "we've got nothing for this".

A wider discussion on the limits of what the NHS or any health service no matter how much you pay can do is long overdue. But no government wants to be the one to kick this off, it sounds like failure not realism.

@Pleaseshutthefuckup

Unfortunately - yes it is.

The child was aged 3 - and had clearly learnt the swear word from the parent.
The parent’s response was soap/water (and I can only think that was a strategy learnt from their parent).
The child was active and demanding, but the parent had poor parenting skills. They now have an ASD/PDA and ADHD diagnosis and the child does not attend school.

Another scenario. Child has ASD diagnosis at age 4. Child is completely in control and will refuse to eat all except 3 or 4 different food types. Parent is totally led by the child, and continues to only give these food types by age 6 and continues to give formula milk from a baby bottle. If the child shows any sign of being upset, the parent will back down and tries to appease the child. E.g the child loses a toy and claims it’s the parent’s fault - the parent agrees to this to avoid upsetting the child. Parent uses as screen as soon as the child shows any sign of being upset, believing the screen is for decompressing. Child is on a screen for a large part of the day rather than engaging in play activities. Parent refuses to do any reading book/tasks set by school if child isn’t interested or chooses not to do it.

You'd firstly need to precisely define what is meant by 'neurological and cognitive style'. We can measure a wide range of cognitive abilities which vary significantly according to age, education and general ability. Picking out patterns even in well defined disorders (Parkinson's, Alzheimer's) is tricky, requires detailed neuropsychological assessment and on it's own is unlikely to be diagnostic - it's part of the picture and needs to be viewed in the context of the individual and change (or lack of it) over time. You could have 2 people with similar cognitive profiles where 1 person has been like that lifelong and the other has dementia

Personally I find the terms 'neurodiverse' and 'neurotypical' to be incredibly vague and ill defined. I doubt if the brain activity of an adult with profound learning disability and severe autism is particularly similar to someone living and working independently with a diagnosis of ADHD or developmental coordination disorder.
Functional imaging is great but it's vulnerable to small group sizes in studies and lack of replication studies (as it's expensive and time consuming, hence not really an NHS tool). I'm not very surprised that this wasn't included in a single chapter on autism (haven't read the book myself, been meaning to listen to it on BBC Sounds)