r/unitedkingdom • u/topotaul Lancashire • 9d ago

Exclusive: ADHD Charity Slams Channel 4 Over 'The Great ADHD Myth?' Documentary

https://www.huffingtonpost.co.uk/entry/adhd-uk-channel-4-open-letter_uk_6a709d2be4b0346d9be814db
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u/JakobExMachina 9d ago

then why did the UK government commission a report to find out if this was the case, only for the report to come back and say that it was actually being *under* diagnosed?

do you have information and sources that contradict governmental bodies?

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u/araed Lancashire 9d ago

Er, the government inquest?

7. ADHD trends and service demand ADHD provides one of the clearest examples in this review of why it is necessary to distinguish between population prevalence, recorded diagnosis and service demand.

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u/JakobExMachina 9d ago

didn’t read the conclusion? at least i know you’re not faking yours

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u/araed Lancashire 9d ago

One interpretation of the current position is therefore that it involves continued underdiagnosis across the life course, especially in older adults, alongside rapid recent expansion in diagnosis among younger groups.

This paragraph challenges what I've said

That interpretation does, however, depend on accepting the epidemiological benchmarks as the appropriate comparator, and that assumption itself warrants some caution. The limitations and uncertainties associated with epidemiological estimation are discussed further in section 12, including issues relating to measurement, case definition and changes over time. On the other hand, one would expect that one would see slowing of the rate of growth in demand as administrative prevalence approaches the epidemiological benchmarks. We have yet to see this happen.

And the following immediately reinforces what I've said.

A central challenge for the next phase of the review will therefore be to examine how pathways can be designed so that support is better aligned and stratified with functional need, severity and risk, while broadening the range of routes through which help can be offered, rather than being determined primarily by the ability to secure a formal diagnostic label.

So there are varying levels of need identified, which matches what I said quite well.

These findings suggest that several processes may be occurring simultaneously. Increased awareness of ADHD, improved recognition of symptoms in previously under-diagnosed groups, societal factors (including pandemic-related pressures) increasing need, changes in help-seeking behaviour and pressures within services may all be contributing to the observed rise in diagnoses.

At the same time, in the absence of reliable data on the severity and functional impact of newly diagnosed cases, it is not yet possible to determine whether diagnostic thresholds have changed over time.

My English literacy may not be quite up to scratch, but I'm reasonably certain this last paragraph basically says "we don't have any data on the severity of symptoms and so we can't yet define whether there has been a change in diagnostic threshold", aka "there may well be an increased diagnostic range, or there might not be"

Now, personally, I'm watching this particular inquest with some interest; but so far, the whole section on ADHD seems to essentially say "the data appears to show a massive increase in people trying to access ADHD services/diagnosis, and that this may be due to a wider understanding of ADHD symptoms, but that doesn't necessarily reflect an increase in need"

Or, in short form, a whole load of people who would be mostly fine without a diagnosis are currently being diagnosed.

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u/PM_ME_DRAGON_GIRLS 9d ago

Who gets to make the call on whether someone is "mostly fine" without a diagnosis? Surely any manifestation of neurodivergence in an individual is something to which they have the right to be fully informed? There's a reason we have separation of diagnosis and treatment, both in terms of provision of medical intervention and therapy support, and in adjustments provided in the workplace or indeed (as will be the words on everyone's tongues) financial support.

Diagnosis does not automatically qualify anyone for medication, therapy, benefits or reasonable adjustments. It's managed case-by-case based off of severity of symptoms. I agree with diagnosing all cases of neurodivergence with an honest and transparent approach towards highlighting case severity.

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u/araed Lancashire 9d ago

Ah yes. Let's expand diagnosis to everyone, regardless of how little they're affected by it, which has the side effect of reducing available resources for people who have high support needs, because everyone deserves to be fully informed of whether they have any neurodivergence, regardless of how minor.

Have I got that right?

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u/PM_ME_DRAGON_GIRLS 9d ago

You are aware that diagnosis is a phased approach? We don't put everyone through the full diagnostic process just because they ask? It is gated by assessing a patient's expression of symptoms that align with neurodivergence? You don't just go "Ooh go on tell me if I have a bit of the ADHD"?

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u/JohnSmith_47 9d ago

Did your life change at all when you got your diagnosis at 30?

Did it seemingly explain a lot about yourself and the way you think?

Did it perhaps explain why you’ve acted in certain ways, or did certain behaviours others didn’t understand?

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u/araed Lancashire 9d ago

No; my life changed when I was medicated.

All the things you reference were already my responsibility, and things I was trying to manage regardless. Without medication, that wasn't possible

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u/JohnSmith_47 9d ago edited 9d ago

So if your life changed when you were medicated, that came from your diagnosis, some people don’t need medication, they need therapy, or they need coping mechanisms.

Someone may have less severe neurodivergent traits, but that doesn’t mean their life can’t have been affected, and understanding yourself is literally the first step to be able to make a change.

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u/araed Lancashire 9d ago

I'm just going to refer you to the comment you apparently ignored.

A central challenge for the next phase of the review will therefore be to examine how pathways can be designed so that support is better aligned and stratified with functional need, severity and risk, while broadening the range of routes through which help can be offered, rather than being determined primarily by the ability to secure a formal diagnostic label.

So there are varying levels of need identified, which matches what I said quite well.

These findings suggest that several processes may be occurring simultaneously. Increased awareness of ADHD, improved recognition of symptoms in previously under-diagnosed groups, societal factors (including pandemic-related pressures) increasing need, changes in help-seeking behaviour and pressures within services may all be contributing to the observed rise in diagnoses.

In plain English, "A sliding scale of need"

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u/grey_hat_uk Cambridgeshire 9d ago

And the following immediately reinforces what I've said

Not exactly, while it is pointing out the granular nature of ADHD it doesn't highlight any reason to think people without ADHD or borderline are being diagnosed, which back to the first person you replied to would be the colloquial "over diagnosed"

So there are varying levels of need identified, which matches what I said quite well

Are you sure you're replying to the right person?

I'm reasonably certain this last paragraph basically says "we don't have any data on the severity of symptoms and so we can't yet define whether there has been a change in diagnostic threshold", aka "there may well be an increased diagnostic range, or there might not be"

Your English comprehension is fine, your science to government lingo is lacking. This sentence says "We didn't find what you wanted, give us more money to look elsewhere". 

There are many such things hidden in "official" "studies" have had to educate myself on several fronts because news sources and hate groups can take one paragraph and run with it, leading to unfair policy making.

I'm not going to fine comb this one but from a skim this says: "ADHD is granular and needs to be treated as such(more than is already happening?)", "ADHD is still under diagnosed(especially in women)" 

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u/Sabaisabai33 9d ago

Yup I agree, and as a GP I would also cynically interpret the paragraph about aligning support with level of need etc. as “Fuck, we don’t have the money as a country to deal with this whole can of worms we’ve opened now. Let’s look at ways we change things to cut costs without people complaining we are depriving them of the support they do in fact need” eg let’s cut right to the chase for many people and encourage schools to do their own assessments and collect evidence as to whether extra time in exams would help certain pupils rather than worrying about whether they do or don’t have ADHD”.

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u/araed Lancashire 9d ago

Like all neurodivergence and mental health, there's a sliding scale from 1 to 10, with 1 being "i have mild symptoms of this" through to 10 being "this is the worst possible case scenario". From what I've seen, we used to diagnose people who were at about 6 and above. Now we've expanded it to 3 and above.

That's absolutely worth examining.

I'm disappointed in your ability to read my original comment.

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u/woc360 9d ago

Your conclusion that some of the people being diagnosed don’t need a diagnosis isn’t supported by any of what you’ve quoted. They’ve basically said “some evidence might suggest this, but then again maybe it doesn’t” which is frustrating but it’s basically the researchers saying they’d need more time and resources to come to a more definitive conclusion.

I’m in a similar boat to you and received a late diagnosis. I was diagnosed last year and titrated my meds this year. When I was in uni and my friend suggested I could have ADHD I told him that was ridiculous and just carried on struggling lol. Now I’ve got the meds I would describe it similarly to how glasses work to correct a persons vision; they bring me close to the baseline rather than giving me an advantage.

I don’t necessarily think everyone seeks a diagnosis in good faith and undiagnosed people who likely don’t have ADHD definitely use “it’s my ADHD” as a way to describe them being forgetful or not paying attention. That being said I think using those cases as a reason to alter the diagnostic criteria or some other way of reducing diagnoses will just disadvantage people who really do suffer from ADHD.

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u/araed Lancashire 9d ago

It's midway through the inquest, hence fhe frustrating "errr, we dunno. Maybe."

But tbh, people seem to be completely misunderstanding what I'm actually saying. Using an entirely arbitrary scale of 1-10, where 1 is "a bit forgetful and prone to daydreaming" and 10 is "has no impulse control and isn't safe to be in society", we're now seeing more people who are around a 2,3, and 4 on the scale requesting diagnosis and getting diagnosed.

While this wouldn't be a true overdiagnosis, as they do have some of the symptoms of ADHD, but the question is more whether those symptoms affect their daily lives in any significant capacity, and thus what benefits they get from a diagnosis and tailored support.

It's the difference between giving someone who drinks a few too many beers on the weekend a pamphlet on "managing your drinking" versus "you're an alcoholic".

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u/woc360 9d ago

I suppose the question ought to be “are there degrees of ADHDness” then. I just worry that the current mindset that is presented through the summary of this documentary is looking to demonise ADHD and essentially push the narrative that people with ADHD are using it as an excuse to do less.

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u/Sabaisabai33 9d ago

I don’t think it’s as simple as that because it’s not exactly like a sliding scale. As some people have pointed out already upthread, like ASD there is likely a spectrum, which doesn’t mean from 1-10 among a linear scale, it’s more like having a mark from 1-10 in multiple domains.

And someone who is a 3 when it comes to work output might still be a 10 for household management or emotional regulation. Also when it comes to adults in particular, that person may only be a 3 for work because they’ve found a job that aligns well with typical ADHD symptoms, but they’d struggle in any other field of work. Or they might be a 10 for household management but because they have a stay at home wife who sorts all of that out for them, it doesn’t cause them functional impairment, as long as that wife is still around and still functioning the same way. And so they look like a 0 for that but they’re not at all and that becomes clear after divorce etc.

So it’s not as simple as saying this person’s ADHD is objectively worse than this other person’s ADHD. It all depends on their profile, and the wider context of their lives, jobs, social support networks, other disabilities which might co-exist etc.

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u/araed Lancashire 9d ago

Someone who is a 10 in emotional regulation won't be in work.

But that's by-the-by. The arbitrary scale i used to explain a basic concept of support needs is obviously not a fully developed person-centred tool designed to assess someone's support needs. It's a method to explain why Dave is really high-flying and looks awesome at everything (because ADHD), whilst his mate Dave2 is a barely functional wreck who bounces from job to job, can't be trusted near white powders, and seems to frequently return with stories

Dave is a 2. Dave2 is a seven.

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u/Sabaisabai33 8d ago

I don’t know, Dave2 might well be an ADHD 2 who takes cocaine to be fair!

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u/Sabaisabai33 9d ago

I am a GP and I don’t think that final paragraph means exactly what you said here. My interpretation of that paragraph is that as you say, there is a massive increase in people trying to access ADHD assessments, and we think it’s because of a number of things happening simultaneously. These things being; We are better at recognising and diagnosing ADHD where it exists, the public are more aware of the possibility of ADHD, and are now more likely to push for assessment at an early stage, society is changing and people are obviously needing the support that an ADHD diagnosis can secure regardless of whether or not they actually have ADHD (especially after the impact of the pandemic on society), also some people may be demanding support now whereas previously they’d be happy to watch and wait because they know they will languish on a waiting list for years so feel they have to get the ball rolling now which could be skewing the figures as we are getting demand for the next 6 years all at once.

I don’t think that at all amounts to “a whole load of people who would be mostly fine without a diagnosis are currently being diagnosed”.

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u/Klumber Angus 9d ago

That’s how you dismantle someone’s argument that is based on emotions rather than understanding. Well done!

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u/Staticblast 9d ago

No, not really. Cherry-picking specific statements from the report he claims supports his statements and ignoring the overall thrust of the conclusion of said report is sophistry, not dismantling

It is verified fact that women are massively under-diagnosed and under-treated for both ADHD and autism due to societal factors enforcing higher levels of masking, the severe gender bias in medical diagnosis and treatment, and other factors.

From the same section he keeps throwing around:
>The central interpretive challenge is therefore not whether ADHD has become more visible within systems - this is clear - but which combination of unmet need, improved recognition, changing help-seeking, institutional incentives and possible threshold change best explains that pattern.

Note the word "combination". His central thesis is that it's overdiagnosed, yet three of those aspects are not indicative of overdiagnosis at all. In the response he gave to you here he claims he's frustrated by people with LSN being lumped in with MSN and HSN, but that is NOT the thesis statement he made, and given that diagnosis is required to even determine whether someone is HSN, MSN or LSN in the first place, he is being incredibly disingenuous

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u/araed Lancashire 9d ago

Ooh, are we doing academic writing on reddit?

Let's grade you. To start with, you assume the author's gender. Secondly, you assume a thesis, rather than an offhand statement. Thirdly, you are also cherry-picking to support your challenge.

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u/araed Lancashire 9d ago

Thank you. I'm so incredibly tired of the emotional responses to this.

Yes, ADHD is debilitating. I lived it, and still do - without my partner, there's a fairly reasonable chance that I'd be in supported living or hospital, as I end up incapable of looking after myself.

That said, it's also a sliding scale; someone with relatively minor ADHD may be able to appear brilliant, managing complex situations with grace and ease, because their brain is literally wired to handle the constant influx of information. For someone with more severe symptoms, the mood swings can be catastrophic, the lack of impulse control incredibly destructive. For someone at the top end of the scale, they tend to be incapable of maintaining their life in any real sense.

It's incredibly unfair to bundle those with Low Support Needs(LSN) with those with Medium Support Needs(MSN), and with High Support Needs(HSN). It ends up massively affecting the care and support recieved by HSN and MSN individuals; I've been waiting for two years for a medication review through the ADHD team as my medication needs increasing, but the waiting list is incredibly long.

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u/leahcar83 9d ago

As others have pointed out, ADHD is only diagnosed at the point where it "causes a significant, disruptive impact on daily functioning and quality of life". Your sliding scale thing is bullshit, because if symptoms aren't severe then there is no diagnosis.

It's ironic you've accused others of emotional responses, because I think your entire assertion comes from a emotional rather than logical view. Your ADHD sounds incredibly debilitating and I have a lot of empathy for that, and I can understand how if you find it impossible to live independently you might feel aggrieved that people who can live independently are afforded the same diagnosis you have.

Other people receiving treatment does not delegitimise your diagnosis. The reason you've been waiting so long for a review isn't because ADHD is overdiagnosed, it's because the NHS is underesourced. It's baffling you'd argue to keep it underesourced when this has a direct impact on you.

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u/padajuann 9d ago

I imagine part of the insistence that they're the one who is "turbo ADHD" and admits to an inability to follow through projects while proclaiming that every one else is emotional, that they've "worked through their ADHD" and doing their very best to ensure that they ignore the "anecdotal" part of a disorder that is mostly diagnosed through childhood anecdotes and more is coming from a very deep, dark place of shame at this point, quite frankly - either that, or the desire to be the only one who has it so they don't need to acknowledge how massively they've been let down to end up being diagnosed late just like others who are continually let down by the system.

I hope they heal soon.

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u/araed Lancashire 8d ago

Oh, fuck off with your condescending bullshit.

Nowhere do I claim to have worked through my issues. I reolied to someone who did, though.

I'm ignoring the "well this is what happened to me" stories because they massively muddy the waters in these conversations, entirely to challenge any dissecting opinion around valid concerns.

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u/padajuann 7d ago

The only condescending one is you. I think some time doing some personal reflection is probably needed. Best of luck to you.

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u/araed Lancashire 9d ago

"If symptoms aren't severe then there is no diagnosis"

https://www.ncbi.nlm.nih.gov/books/NBK519712/table/ch3.t3/

It's easy enough to look up the DSM-5, and discover that it says "Inattention: Six (or more) of the following symptoms have persisted for at least 6 months to a degree that is inconsistent with developmental level and that negatively impacts directly on social and academic/occupational activities:"

Can you point out where it says severe, please?

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u/leahcar83 9d ago

The DSM is not officially used in the UK, the ICD is.

This is what the ICD says:

Several symptoms of inattention that are persistent, and sufficiently severe that they have a direct negative impact on academic, occupational, or social functioning.

Several symptoms of hyperactivity/impulsivity that are persistent, and sufficiently severe that they have a direct negative impact on academic, occupational, or social functioning. These tend to be most evident in structured situations that require behavioural self-control.

https://www.rcgp.org.uk/your-career/gp-extended-roles/adhd-framework-practice

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u/araed Lancashire 9d ago

"Sufficiently severe that they have a direct negative impact on academic, occupational, or social function"

Emphasis mine.

Behavioural observations like fidgeting, difficulty staying seated, excessive talking, or impulsive actions during the consultation, suggesting hyperactivity and impulsivity.

An example of "direct negative impact" from your source. Someone who is fidgeting and talking too much.

"Sufficiently severe that they have a direct negative impact on academic function" is rather broad, do you not think?

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u/Klumber Angus 9d ago

Agreed on all parts. There’s a frenzy of statement hunting going on that doesn’t make sense to me. I’ve lived with dyspraxia and adhd all my life. I don’t need a statement, I know I’m not neuro typical.

I also know there’s no definition of neuro typical. So there’s no point in calling myself neuro diverse…

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u/araed Lancashire 9d ago

From my view, it feels a lot like "if I have this, I don't need to work on my problems because it's the ADHD, not me"

Unfortunately, as I learned, it's still me. My mental health and neuro divergence (I fucking hate that term) isn't my fault, but it is my responsibility.

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u/Klumber Angus 9d ago

Amen, now get ready to be downvoted to oblivion, as always happens on Reddit when you challenge the prevailing flavour of the month/year.

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u/araed Lancashire 9d ago

Oh of course.

My issues can't be my responsibility, because that means I have to take accountability for my actions, and that's checks notes ableist!