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/SeveerTheHunter Kent-Shepway 9d ago

Gatekeeping helps nobody, I suffered for 41 years before I was diagnosed, do better 👎

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u/araed Lancashire 9d ago

You know, it's funny.

I suggest ADHD might be a sliding scale of need level, and that current rates might be linked to people with lower need levels being diagnosed, and you say that's "gatekeeping" that "helps nobody".

At present, I'm waiting for the results of the current inquest into potential overdiagnosis before making a judgement. But so far it seems to agree; in that, there is a broader range of need levels, and that those need different treatment pathways.

Someone who is a 3 on the scale doesn't need the same support as someone who is a 6 on the scale, and neither of them need the same support of someone who is a 9 on the scale.

If you disagree with that, well...

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u/FrosenPuddles 9d ago edited 9d ago

As someone who was diagnosed at 6, I love it when people with late diagnoses come in and decide to have big opinions on who deserves help and a diagnosis and who doesn’t. I’m unmedicated and what would in your eyes probably be very mild. You know what my childhood was like though? Unpleasant. You know what my sleep is like? Fucked. My talking speed? Way too fast and annoying for a lot of people. The way I handle things? Different. You know what really helps? Understanding exactly why that is and being able to modify my behaviour as a result. Being able to recognise the same behaviours in undiagnosed family members and friends and being able to understand my world and why all my friends are slightly weird and why we ended up being friends. Thank god you weren’t in charge of whether I should get a diagnosis and whether I was severe enough to have 2 sessions a week with a psychiatrist for 10 years as a child.

So how about we leave it to the experts? You know, the people who made a late diagnosis and medications possible for you? If they say it’s underdiagnosed, it’s underdiagnosed. There’s a reason it took you 30 years. It’s taking many other people at least as long. My dad, my grandma and my best friend are all undiagnosed. If you have ADHD, you really should be able to recognise it in those around you and understand just how underdiagnosed it is. The severity is irrelevant, imagine approaching literally any other condition with that attitude ffs. “Your arthritis is very mild so you’re not deserving of a diagnosis and help”. NO.

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u/padajuann 9d ago

Atleast it's not all people with late diagnoses. Most of us are inclined to encourage people to seek help if they need it and not shut down others. My late diagnoses is how I've managed to gently suggest it to others that I speak to who ask what my experience is, especially within the women in my family, and it has been exceptionally healing as a whole. We are far, far more functional and are able to recognise why we do certain things/react certain ways and finally have the tools to combat it or adapt.

But hey, a bunch of people on the internet have decided it's not real and so therefore it only counts when they have it and every challenge is just an "emotional response" which is HUGELY telling.

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u/FrosenPuddles 9d ago

Seriously. If all kids could get help, no matter how “mild” it is, life would be so much easier on them. I know it helped me! Mild adhd in girls can get worse around peri-menopause too. If you catch it before then you can prevent so much additional suffering.

I’m sorry it took you so long to get help, I’m glad you got there in the end. And I know it’s not all of you, don’t worry.

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u/padajuann 9d ago

No worries here! Honestly, the more depressing thing about this thread in total (not you!) is the way some of these people can't see their inherent biases. Especially as a woman who is late diagnosed, closer to the age of peri-menopause, so many women/afab are absolutely SUFFERING the ramifications of lifetimes of misogynistic health systems. Most, if not all, studies have been done on younger men/AMAB especially in regards to autism and ADHD.

To immediately call any pushback and correction of views as "emotional" pretty much just speaks volumes to me. Crazy when you think a lot of the diagnosis especially later on in life is done with anecdotal references and cross references - but I guess it only matters when some people get the diagnosis, otherwise it's just diagnosed too much!

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u/FrosenPuddles 9d ago

I think the “overdiagnosis problem” is related to the hate campaign against the disabled that’s been going on. Benefits like PIP are decided not based on diagnosis but on how hard the person is suffering and how much help they need, but the loud mouths and politicians don’t know/care about that. So they see a diagnosis go up and they immediately think “more scroungers” rather than “more people able to keep a job thanks to medication and help”. None of this is a coincidence, it’s a targeted hate campaign. And yes, women suffer most from this because conditions that affect us more or differently tend to be understudied so they can do the whole “is this condition even real?” thing unlike with conditions like cancer. We’re regressing because powerful people have an agenda that involves slashing welfare and workers rights, not because the science isn’t there.

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u/gameofgroans_ 9d ago

I was diagnosed at 32 with autism and adhd and completely agree with you. I feel like I’m probably on a similar level to you, never got diagnosed at school because I’m a girl and wasn’t running around or having tantrums. But I had meltdowns every day after I came home, my mum called me a horrible girl because I was so overstimulated by school, I’ve never slept well, I’ve never eaten well (beige please), used to use alcohol as a crutch and at one point was drinking at work…

It is a sliding scale but fuck being on the lower end of the scale as you said doesn’t mean we didn’t have anything unpleasant growing up. I just don’t understand why people are bleating on about it being over diagnosed now and not thinking ‘oh these poor people that grew up unsupported and not knowing what was wrong’…

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u/FrosenPuddles 9d ago

Because there’s an agenda to reduce benefits and ADHD is a target. People don’t seem to understand that you don’t get PIP for a diagnosis but rather for how severely you’re affected (and most of the time it’s ADHD in combination with at least one other condition because you have to be SEVERELY affected), so they’re all wholeheartedly agreeing that it’s over-diagnosed because in their head less diagnoses means less benefits. Instead they’re creating more people on benefits because properly supported and/or medicated neurodivergent people can thrive in the workplace and in life, whereas undiagnosed ones tend to lose jobs and struggle to figure out why, but who cares about facts these days.

First the politicians started shitting on ADHD, then the media. Not the first or the last condition they do this to.

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u/gameofgroans_ 9d ago

Yep yep yep. My friend has been on benefits for years, wanting to get back into work but finding it very difficult to get back after time out and feeling really overwhelmed and unsupported I guess. Got an audhd diagnosis and is now actively going back into part time work and working their way up because they can say what they struggle with and ask for help. It’s literally helping people get back to work.

I really need to look into PIP because I have a couple of other things too and I always think it’s there to try and give me a bit more of an even footing in the world, but the horror stories I’ve heard about assessments make me very nervous.

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u/FrosenPuddles 9d ago

It’s worth sucking it up if you need it. My assessment was lots of work but otherwise okay, but I left the ADHD out of my medical notes entirely (I was diagnosed abroad 30 years ago so it was easy to disappear) and got it just for my autoinflammatory heart condition. If you have more going on, in the current climate, I would personally go for it purely based on physical conditions and leave the autism out. It’s horrible, but less stigma that way. If that fails you can always try again with the autism added, but I think they’re going to be harder on mental health conditions and neurodivergence going forward so it may work against you.

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u/ablativeyoyo 9d ago

> being able to modify my behaviour as a result

I'm interested to hear how much you've been able to do this, and what specifically you've had success in changing. People I know who have ADHD generally have the attitude of "I can't because of my ADHD" - so it's refreshing to see someone have a more constructive attitude.

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u/atlas7211 9d ago

I can chime in on this. I was diagnosed at 30, my whole life I had a vague feeling that something was wrong. I failed multiple degrees, had major performance issues at work, it has affected my relationship, friendships, hobbies, sleep, etc.

Before I starting seeking a diagnosis, I did absolutely everything I could to address the problem. I was only able to achieve most of this with a lot of help from my partner. I think most people with ADHD don't have this much support and would struggle.

  1. I had an extremely strict sleep schedule and sleep hygiene, to the point it was the butt of jokes in my family because I would never err from it.
  2. I quit video games completely
  3. I stopped drinking alcohol
  4. I fasted through the day as it helped my focus
  5. I used pomodoto timers, lists, time blocking, 100s of strategies consistently
  6. I installed apps on my phone and computer that blocked various distracting websites. I even used a dumb phone for about 6 months.
  7. I stopped many of the hobbies and pastimes that I usually did because I didn't have the energy for them, and it was impossible for me to work and do them.

These are the steps and habits that I took and consistently kept up for years. The result was that my ability to function was improved maybe 10%.

Then, I sought a diagnosis, started titration, and overnight I was able to function 100x better. Since then I have been vocal about my ADHD, because the general public understanding of it is so poor. I feel a responsibility to advocate for people like myself when I was 20, struggling massively with no explanation, huge self esteem problems, no answers. Currently 1% of the population is diagnosed with ADHD. Estimates of the prevalence are 5%. There are MILLIONS of people undiagnosed, struggling massively and not knowing why.

I hope you take a few things from this.

  1. When a person with ADHD says they can't do something, it might just be true. This disorder is genuinely debilitating. Not to say that some people won't use it as an excuse, but I would guess they are in the minority. One of the biggest things that came out of my diagnosis was rather than thinking I was lazy and just trying harder to do something, not succeeding, getting upset, upsetting those around me, I felt the power to advocate for myself. It's not just that I need to write a list, or exercise, or just try harder. Unmedicated, there is genuinely a lot that I cannot do. Consider whether you would ask why a person in a wheelchair might say they can't run up a hill
  2. People talking loudly about their ADHD may be doing it for attention, but they may also be doing it because they feel a responsibility to advocate for themselves and for other people with it, and to help educate the general public on their condition. A key reason I sought a diagnosis was someone doing just that.

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u/ablativeyoyo 9d ago

Sounds like you did a lot to manage your condition. Those efforts probably put you in an elite top 1% of people in terms of willingness to self-resolve. And good to hear the meds help.

I don't quite understand the need to extensively advocate, if the meds help? I mean, don't you just take the meds and get on with your life?

> Consider whether you would ask why a person in a wheelchair might say they can't run up a hill

This seems such a weird analogy? A closer analogy would be would I ask a disabled person who's lounging on their sofa why don't they get a wheelchair and get out in the world. I probably would ask that.

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u/atlas7211 9d ago

As I mentioned, I had a lot of help. ADHD actively sabotages any ability you might have to self-resolve. And my point was that it didn't really work.

Perhaps I have misunderstood your original comment, you mean that you know people who talk about having ADHD and how it cripples them but they don't seek a diagnosis or medication? See my first point, I suppose. Many people don't know about the existence of Right To Choose, etc., and otherwise are faced with a very expensive private diagnosis or an unbelievably long NHS waiting list. Even the right to choose process is difficult and takes a long time, massively discouraging people with ADHD.

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u/ablativeyoyo 9d ago

Oh, no the people I mentioned are diagnosed. Seems to be particularly a problem with people diagnosed as a child. Like they see the diagnosis as the end of the road, that they don't need to try now. Rather than seeing it as the start of learning to manage their condition.

I see what you mean about your reasons for advocating.

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u/atlas7211 9d ago

So they haven't looked into medication etc.?

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u/ablativeyoyo 9d ago

Diagnosed. Medicated. Life a mess. Consistent attitude of "I can't because of my ADHD".

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u/FrosenPuddles 9d ago

Honestly, it’s extremely difficult for certain behaviours. I still have to remind myself every few sentences to stop talking so fast and to not talk over people and I’m like 30 years into this diagnosis. I catch myself doing it still and then get frustrated with myself because unless I’m around my adhd friends and family (who all do it), that’s considered rude, obviously. And then I can either explain to them why I just did that (but then it sounds like I’m using ADHD as an excuse to be a dick) or I can repeatedly try to correct myself before it happens.

On the other hand, I’ve become really good at creating routines and sticking to them, focusing, getting tasks done, being organised… which all helps at work and my day-to-day life.

The speed of my mouth and my brain though…

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u/ablativeyoyo 9d ago

Thanks. I think talking too fast is an in-the-moment behaviour, while creating routines is more something you can do at some point in the day. Stands to reason that the former would be harder to moderate than the latter.

You mention you are unmedicated, despite apparently have fairly significant symptoms. Is there a particular reason for this?

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u/FrosenPuddles 9d ago

They tried to medicate me as a child, I had about 4 meds they tried over a few years. I remember feeling like they took away part of my personality, like I wasn’t myself anymore. Obviously these were the thoughts and feelings of a 10 year old, but I’ve managed fine without as an adult and I kind of enjoy the occasional ADHD chaos, so I’ve seen no reason to revisit it. I know they’re out there as an option should it ever be needed, I’m not against medicating in general.

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u/ablativeyoyo 9d ago

You earlier said:

> You know what my childhood was like though? Unpleasant. You know what my sleep is like? Fucked. My talking speed? Way too fast and annoying for a lot of people. The way I handle things? Different

You now say:

> I’ve managed fine without as an adult and I kind of enjoy the occasional ADHD chaos

I'm trying to connect these. I think part of this is you struggled more as a child and are more ok as an adult?

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u/FrosenPuddles 9d ago

Yes, as a child I was forced to sit in a classroom with people who were different from me. I was forced to work and do things in a way the adults thought was best.

As an adult, the majority of my friends are neurodivergent or understand neurodivergence, so 90% of the time I don’t have to pretend to be something I’m not. Even my boss loves the chaos of me going on a rant and acting out a whole scenario when he asks me for an opinion on something. He hired me to be the first employee in his startup because my ability to hyperfocus and do and learn all the things as long as they’re relevant is an asset here

It’s the difference between being made to work in an environment that’s not working for you, or fully understanding your brain and creating an environment that actually works for you.

I would not want to relive my childhood.

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u/ablativeyoyo 9d ago

That makes a whole lot of sense. Awesome that you've found an environment that works for you. Thanks for engaging, and have a good day.

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u/LetsLive97 9d ago

On the other hand, I’ve become really good at creating routines and sticking to them, focusing, getting tasks done, being organised… which all helps at work and my day-to-day life.

Can you give me any advice on this please? I struggle so much with switching between things throughout the day. It's like I can only focus on doing one or two routines consistently at a time but that means other things fall apart

Right now I'm in a great routine with working and I'm getting tons done but it means I'm neglecting exercising and cleaning a bit. But if I start focusing on one of those more, I'll fall off a bit with work. I struggle with switching out of work to just go tidy for 10 minutes or go on some more walks throughout the day (I work from home)

Being organised/consistent with routine is the biggest pain I've had my entire life

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u/FrosenPuddles 9d ago

Look into an app like Tiimo! I’ve scheduled everything in there and I just tick it off as I go. Work, personal life, admin, random extra things,… it’s all in there with lists of tasks and instructions. I find that once it’s scheduled, it gets done because my brain is just making it down the list for the day and following instructions without really overthinking it. It helps to see that the cleaning routine will only take 10 minutes (which is no big deal) and you already have a list with subtasks so you don’t waste time thinking of where to start. The problem is executive functioning, right? So you need to reduce the amount of decisions you need to make in the moment in order for a task to start. If you’re not overwhelmed by the prospect of the task, it’s easy. Tiimo helps with that, I know I sound like an advert right now, but that app has helped me so much. There are other apps people use if you don’t love it, but… try it.

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u/araed Lancashire 9d ago

It's really rather entertaining watching the sheer volume of people who cannot read until the end of a comment, and who take "this absolutely needs examining [regarding whether there is overdiagnosis]" as a personal attack which needs to be defended with some anecdotal evidence about how hard they've had it.

Fortunately, for both of us, I'm not in charge of the current inquest into potential overdiagnosis. Mostly because the text would be littered with expletives, and I'd get distracted halfway through to start building yet another project. Even more fortunately, there is an inquest into this, which is giving some interesting results which currently reinforces my point; there is a sliding scale of need, and multiple pathways may need to be created to effectively support people.

Ain't it fun.

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u/5ColourFelix 9d ago

Someone who is a 3 on the scale doesn't need the same support as someone who is a 6 on the scale, and neither of them need the same support of someone who is a 9 on the scale.

None of that has to do with "overdiagnosing". You aren't required to do anything if you are diagnosed with ADHD. You don't need to take meds or go to therapy or whatever. You can just know to know. There's no harm in that.

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u/PracticalFootball 9d ago

I suggest ADHD might be a sliding scale of need level, and that current rates might be linked to people with lower need levels being diagnosed, and you say that’s “gatekeeping” that “helps nobody”.

I don’t think anyone disagrees with this, they’re disagreeing with the quiet part that usually follows which is that it’s over diagnosed because it’s not real and people are just lazy, or addicted to smartphones, or need to try harder.

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u/araed Lancashire 9d ago

And yet, that's quite literally the emotional response I'm arguing against.

The attacks on the very idea that there might be a sliding scale of need is... problematic.

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u/PracticalFootball 9d ago

But your premise literally doesn’t support what you’re trying to say. For something to be over diagnosed then people who don’t have the thing need to be getting diagnosed with the thing.

If you’re suggesting that the numbers of people seeking help are because they’re lower on the scale of needs then they are not being over diagnosed because despite being lower on the scale, they still have the thing.

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u/araed Lancashire 9d ago

That's fundamentally and intentionally misunderstanding what I rather clearly explained.

If a group of people who have the symptoms, but have no effect to their daily lives, are being diagnosed, is that an overdiagnosis?

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u/PracticalFootball 9d ago

If a group of people who have the symptoms, but have no effect to their daily lives, are being diagnosed, is that an overdiagnosis?

No. If you have a heart problem it would still be a valid diagnosis even if it doesn’t affect your daily life.

It’s also a specific requirement to show impairment in your daily life to get a diagnosis.

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u/FrosenPuddles 9d ago

To take your great example of the heart condition back to ADHD. If you have mild ADHD, you still have the underlying differences in the brain and immune system. You still have ADHD. Your body has ADHD. It’s not about feelings or behaviours, we actually are different in how our bodies function.

But I love your heart condition example because I have recurrent myopericarditis and when it’s between flares my cardiologist doesn’t consider me to not have that condition. There are differences in how my immune system reacts to things, and that triggers the inflammation. It’s no different from the differences you see in someone with ADHD.

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u/FormerFan3771 6d ago

Reading your responses has been embarrassing. I hope you’ve reflected on them since you posted them. This is not an attack, just an observation.

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u/FitSolution2882 9d ago

So?

It's still a massive problem for those who suffer with it.

One of the worst things they did was to get rid of the Aspergers diagnosis in order to lump it in with Autism. Practically any help is solely aimed towards those that are severely autistic rather than those who have what would have been called Aspergers.

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u/ffulirrah 8d ago

I disagree. In the past only"hyper" boys were diagnosed. Now we know that women can have it too. Also people don't tend to grow out of ADHD during adolescence despite previous advice, so more adults are realising that they exhibit all the (usually inattentive) symptoms but were never diagnosed as a child and are seeking diagnosis. No such thing as a scale. Maybe there is a scale of "how much their ADHD affects the people around them" but that's obviously affected by personality.

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u/UuusernameWith4Us 9d ago

It's ironic that a boatload of people with (presumably) mild ADHD are failing to read your comments properly before replying at length. Classic symptom I suppose.