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

@MyHouseInThePrairie

Yes I was talking more about ND and excluding children. Relating to my experience : which is 2 exclusions and an attempt to exclude my child before the age of 6.

I have no idea why you’re telling me any of this.

Really! How?

@L00pl00p

Absolutely! But can they get away with doing what they want - despite what the law states? Yes they can.

Not all diagnosis lead to an improvement in quality of life or access to support though.
Because there are illnesses that don’t have treatment. And I’m not talking about ND here. I’m talking about LC, ME, ALS etc etc….

But getting a diagnosis is still essential. Because it names the issue. It’s not just in people’s head. It’s not them being lazy. Or anxious or whatever.

This author is just one of those arrogant doctors who dint listen to patients and think they know best. Not sure why. It’s like they feel they have a god given power to decide how people feel for them.

So considering you know so much and the very lengthy form so well, show me how just an ADHD diagnosis would rack up enough points and where you’d get the evidence from to back your claim?

Yes, it's different. It doesn't mean the struggles of the other autistic adults should be negated or aren't difficult.

It’s not an hour diagnosis though. The assessment may last an hour, but there will have been forms filled in beforehand that give the assessor context about the individual’s life and history; there will have been forms filled in by family members/other professionals. There may be medical/educational reports given. These all inform the assessment, it’s never just an isolated hour with no preparatory work

What are you on about? They are actual statistics. So why do you think someone wouldn't meet the criteria 'just for ADHD?'.

The statistics are for people whose MAIN disability is adult ADHD, and they are awarded PIP as ADHD being the main disabling condition. Other conditions can and are mentioned but I don't know why you think someone would put a claim in for PIP with ADHD as their main disability if that wasn't the case?

Of course it also means some people will be receiving it for 'just' ADHD. I personally know people who are.

I agree in principle and doctors like this make me sick. The entire profession of medical training needs a reevaluation. God complex needs to be removed from the system. It's making sick women's lives harder.

That said, I have struggled all my life with what I think is ADHD (which is essentially meaningless and my opinion) and my life is severely negatively affected. When I went to school it simply didn't exist in girls. That said I have not gone for a formal diagnosis (well I tried, but my borough does not do NHS adult assessments and I didn't push myself to try and obtain a private one) and the reason why is partly because I do think that ADHD in women is possibly not defined tightly enough and so you see so many influencers online doing 'trope' ADHD symptom presentation reels that read as essentially normal everyday things.

Of course women talk about things affecting them more than men do, it's why breast cancer has more public awareness than prostate cancer does, so it's not suprising that women discuss ADHD more as diagnosis in women has become more prevalent

But by the metric displayed (often on SM) it's not surprising that many people dismiss ADHD as being mental health cosplay (not my opinion). I find it frustrating and you do not get this sort of flippant attitude given regarding other neurological diagnosis and perhaps there needs to be a more serious tone about the entire thing.

It is illegal to deny a child a school place solely because they have autism. The Equality Act 2010 prohibits discrimination against disabled pupils, and autism is considered a disability under this act. Schools must make reasonable adjustments to ensure all pupils, including those with autism, can access education.

I’m all for diagnosing if it helps the individual child cope better… and more importantly isn’t to the detriment of NT kids.
Surely we cannot change the entire education system to accommodate the few and exclude the many.
It’s the same argument someone made upthread about how you cannot accommodate ALL types of ND as they’re different and present differently.

I have seen threads on here when someone was told to remove her NT child from school after she was being touched inappropriately by an ND child. That blows my mind.
If the majority of children are able to thrive with the education system as it is, why would we want to change that? There needs to be far more support for ND kids I agree, but we cannot make the world fit around the few to the detriment of the many

@Riaanna

When a person receives a diagnosis it should benefit their quality of life and the diagnosis should be an accurate reflection of a person’s needs so they get the right support.
A diagnosis should not result in an individual being excluded from society, an individual being made to feel there is something wrong with them or detrimental assumptions being made about an individual.

Exactly. I've also worked in this area for many years. People won't believe what you or I say though, despite working in the area, just their own beliefs and despite evidence to the contrary.

I don't know why you'd be disappointed with people not mentioning it on a chat forum about a book.

But to reassure you, when I worked in the Adult ADHD field I was part of leading trying to make that happen in the areas covered by my NHS trust and I made business plans to seek funding from NHS England for a specific service.

That didn't happen so I was using my own time quite often going into prisons to perform assessments and train staff to look for signs/symptoms.

That was a few years ago and I have since left that service as I got a more senior role and since I then, there are now specific specific neurodevelopmental teams covering the prisons in the areas covered by my NHS trust.

I believe it's happening in other areas too and if successful, i'd imagine they'll be rolled out nationwide.

https://www.gov.uk/government/news/greater-support-for-neurodivergent-offenders-in-bid-to-cut-crime is a good start and I believe more dedicated health teams are in the pipeline.

This! It’s ridiculous .

Wouldn’t meat the PIP criteria for just ADhD. Hell I have both and don’t meat the criteria. Doesn’t mean they haven’t significantly impacted my life though.

And again you can’t get an autism diagnosis in an hour with a tick box form.

Exactly.

They say the Panorama expose was poor journalism when the programme was made because so many people working in the field, were saying it is a problem. And the programme proved that it is.

As do all of these companies doing these poor assessments, prove there is a problem and that misdiagnosis is happening which of course leads to over-diagnosis.

Yet all these myths still persist: "it's hard to get a diagnosis, it's expensive, nobody would want one, ADHD meds don't work if you don't have ADHD, you can't get disability benefits for ADHD, there are no financial or employment advantages to the diagnosis"

All false.

When I worked in the sector and was part of diagnosing someone with adult ADHD, the person would sometimes say 'so can I claim PIP?' and i'd say, you can try but PIP is based on really specific functional disability so it would be rare for someone with adult ADHD to get it unless there were other conditions.

I believed that to be true at the time but have since discovered that out of 500 plus conditions that can form a PIP claim, ADHD is the 14th most awarded as the main condition, with 41% of ADHD claimants getting the enhanced rate of both daily living and mobility awards.

As you can only claim PIP over 16 years old, we're essentially dealing with adults with ADHD and as adult ADHD has only been formally recognised as a condition in the UK since 2000 and by NICE since 2008, it's astonishing that it's risen to such a position in PIP benefit claims in such a short space of time.

So you don’t think an autistic person should have the diagnosis of autism?

I did - however they also interviewed my dad and wanted a lot of information from him as well.

Not in terms of their autism though - they are either autistic or not, same as anyone who you might decide is ‘not as bad’. As a PP suggested, much of that may well be comorbid learning difficulties anyway.

@Riaanna

But this nearly happened to my son.

With a SEN system in crisis, exclusions at an all time high, a school trying to exclude my child before they had even met him because they thought he had ASD, and two further exclusions in DS’s class already before the age of 6 - very, very open discussions need to be had around this and discussions shouldn’t be shut down.

We should NOT be excluding children. I also don’t think we should be labelling children. We should be meeting their individual needs and NOT giving them the impression that there is something ‘wrong’ with a child by our adult-defined labels and standards of ‘normality’.

ADHD is actually underdiagnosed. See here: https://www.facebook.com/story.php?storyfbid=pfbid02zcdhEHgmLaykk4HjYpz5WGHXozPnv5YshncD1UZZnSF8QYrummwH2Hn9duj9psKBl&id=100068086362854

The waiting lists are huge and in west Yorkshire alone, the service has been stopped due to 10 years waiting list. People are fighting to be assessed so not really a sign of over diagnosing when you can't even get an assessment!

I'm so tired of this goady crap. I'm a late 30s woman, diagnosed late in life. Due to gender bias, women are massively under diagnosed as we present differently. The biggest diagnosis age group is my age group. Do you think women my age follow a trend? I wish this was a trend. I'm sick of myself, my life because of this shit. People who think it's over diagnosed politely don't know what they are talking about. If someone wants my life they can have it. I'm not medicated either.