u/Jayhcee

A statement from r/ADHDUK, one of the UK's largest ADHD communities with nearly 100k visitors weekly.

On Tuesday 18 August, Channel 4 broadcast 'The Great ADHD Myth?', an hour-long documentary fronted by psychiatrist Dr Max Pemberton that asked whether ADHD is a genuine neurodevelopmental condition or, a social construct. We are speaking out because of the effect it has had on the people we see on our community every day, and the growing stigma we already face.

r/ADHDUK is a community of more than 50,000 people, with close to 100,000 visits every week. For many of our members, it is the place they turn to while they wait months or years for an NHS assessment, frustrated, or finally make that post when they realise the impact medication is having after a diagnosis. This is the case for 70-80% of ADHD patients, evidence suggests.

In the hours after the programme aired, our discussion threads were viewed close to 50,000 times and drew hundreds of comments. We have read them all. A great many of our members are distressed, angry, and feel what we heard is a growing trend.

But the common theme, naturally, is anger. One member called the programme 'disgraceful, shambolic' and said it 'should never have been allowed to air.' Others described it as 'sensationalist' and as a 'hit piece, created in bad faith.' Others commented on that

Some comments are hard to read: 'Biggest takeaway for me was how much my chest hurts now', one user wrote. Channel 4 cannot say they were not warned about this, with the charity ADHD UK expressing concern.

Further, 'how deeply invalidating" another told us, and simply, "I'm so tired of just wanting to exist and be happy sometimes." A member diagnosed later in life, like so many, after years of being disbelieved, described how 'my get-up-and-go has got up and went.'

These are not people looking for an excuse. They have already spent a long time being told their struggles are their own fault, in distress, waiting, and with stigma around them - and on Tuesday they watched that message repeated on national television.

We have serious concerns about how the programme was made.

It drew heavily on a small number of commentators, several with no specialist background in ADHD, and did not feature a single diagnosed adult speaking about their own experience. As one member put it, 'you can have all the doctorates in the world, but nothing beats lived experience'. The principle the disability community has held for decades, nothing about us without us, was missing from a film about us.

It presented ADHD almost entirely through the story of one ten-year-old boy. This is not a rich case study or research. No women were represented, a major red flag. Neither, as said, were the many adults, like most of our members, who were diagnosed in their thirties, forties, fifties and beyond. One member wrote, 'they completely ignored how differently we [women] present'. One of our members knows someone who was diagnosed at seventy-nine. Where was this representation in this, supposed 'social construct?'

We were also troubled to see prescribed medication compared on national television to a Class A drug. This is licensed, trialled treatment, and framing it that way does real harm. As one member said 'masking symptoms? It's called managing symptoms'. As a community, we would hope a Psychiatrist understands this too.

It is right to ask difficult questions. Several of our members said the same thing, and they were right: there were fair questions in the programme, yet buried beneath a one-sided narrative. Are children sometimes medicated too readily? How subjective is diagnosis? Should medication always be the first step? Do our schools work for children who think differently? We would welcome an honest documentary that asked these questions.

What we cannot accept is a national broadcaster putting the existence of a WHO recognised condition up for debate under the word 'myth' and then quietly noting, at the very end, that the child at the centre of the film had returned to his medication because he needed it. What purpose did this serve?

We are worried about where this leads. Several members, independently, described ADHD becoming 'an acceptable target'; a way of testing public opinion before a wider push against disabled people and the support they rely on. A programme like this makes a worried parent more sceptical, makes a struggling adult less likely to ask for help, and simply did not follow the sheer amount of growing research on ADHD now.

It is important communities like this exist up against such a documentary, where we can collectively not feel alone or invalidated. Amid the upset, one user wrote, 'do not make defamatory or abusive statements about anyone in this show. We're smarter than that.' An occupational therapist offered to help put the facts straight, having already written a report on the lack of ADHD services for young people. That is the community we are proud to represent. Genuine, impactful, and evidence-led. i

We are asking Channel 4 to acknowledge how our members feel, and we support any of our members who wish to raise their concerns with Ofcom.

https://www.ofcom.org.uk/make-a-complaint

Founder, r/ADHDUK*  

A shout out to all the MPs that signed this letter and showing some support.

I may put together something where as a community we can use strength in numbers to respond to this.

Thoughts?

https://preview.redd.it/9tv2hdgsh4kh1.png?width=488&format=png&auto=webp&s=693b6859949ee34aab251e32984b94c1d10b5145

(and Tescos!)

https://www.instagram.com/stories/adhdadult_james/

You can't see it, but the front page says meet me, founder of r/ADHDUK. I was interviewed by Professor James Brown and simply talk about this community, how it came to be, and how wonderful it is really! Nothing advertised. I am next to Sonic the Hedgehog. It certainly is apt.

The first edition is great, and it is all evidence-led and some great stories and advice in there. Feel free to pick it up if you want!

I'm glad I'm not in the country so I don't have to see my face when shopping.

So we know this is tonight. Some will choose not to watch. Some will. Let's hope it isn't as bad as the title. Given responses to complaints, I hold little hope.

This is something I've been thinking about for some time. If I create it myself, or am seen to be profiteering in name recognition, that is something I think where fingers can be pointed at me..

But we cannot deny that 100k (or shouts) land here every week. We have serious power through our views, language, quotes and perspective. This is more important than ever, if we can use it right. My thinking is partnerning or allowing a charity, already established, more influence and to carry out reports etc where any data or posts would be clearly marked and obvious and optional. This is how, I think, we respond to things like Channel 4. As it stands, we can be just dismissed as just a subreddit. Anyone who has been here a while knows we're more than that.

We have previously tried to affiliate with one charity but, despite Reddit admins wanting to assure any potential legal problems, they wanted to keep things a bit distant. That is understandable.

Anyone got any ideas or feedback? Happy to follow your lead. I'm just conscious of the fact we do have power, can use it, if we organise properly.

Especially if on stimulants. Or if you're the hyperactive type! Feel free to suggest how you've been dealing with the heat.

I'm currently out of the country, and not to rub it in... in a better place with air con everywhere. The UK is surely heading this way with the summers the last few years?!

Statement from the ADHDadultUK on Channel 4's forthcoming documentary 'The Great ADHD Myth?'

"At ADHDadultUK we support responsible journalism, open discussion and continuing to learn more about ADHD. Asking questions about healthcare, diagnosis, treatment and support is reasonable and important.

Like many others we are concerned that the way Channel 4's forthcoming documentary, The Great ADHD Myth?, is being described has the potential to create misunderstanding about ADHD before the programme has even aired.

The title and accompanying press release describe the documentary as seeking to determine 'whether ADHD is a genuine neurodevelopmental disorder, or a social construct'. Alongside questions about diagnosis, assessment, medication and support, this invites people to question whether ADHD itself is a genuine condition, and they are very different conversations.

ADHD is recognised by the NHS and major clinical bodies internationally as a neurodevelopmental condition. There should absolutely be discussion about how ADHD is identified, supported and treated. But presenting the existence of ADHD itself as something that's still up for debate risks confusing people about what the evidence already tells us.

We're already seeing members of the ADHD community express concern that the title and press release may reinforce stigma and disbelief. Many adults with ADHD have spent years trying to understand themselves before seeking an assessment, and many still face misunderstanding and discrimination from employers, educators, healthcare professionals, friends and family. When the existence of ADHD is publicly questioned, it can make people feel they have to defend their diagnosis or explain themselves all over again.

Our concern isn't that questions are being asked, asking questions are how we improve understanding and healthcare. Our concern is that questions about diagnosis, medication, environmental factors and ADHD services should not become confused with questions about whether ADHD exists at all. They are not the same thing."

Full statement: https://www.instagram.com/p/DbtM0l9gbI7/

We all know the big-ticket ADHD tax stuff and we've seen that weekly on here at this point. So I thought I'd try something different. I want the most ridiculous one.

The fine that should not logically exist. The stupid parking fines. Where your sense of injustice hit. The duplicate purchase that no reasonable person could explain. The little charge that made you sit and stare at your bank, thinking... how did this happen."

Mine is normally duplicates. Forgetting I've bought a cough journey, or topped something up. Working memory is bad, and I don't check. Also booking the wrong dates. Despite my attempts to be more careful, tis a common theme.

Bonus points if you can still remember the exact logic because half the fun is watching yourself explain a decision that made perfect sense....

No judgement in here as always. The dafter the better. Go.

I paid full whack for my prescriptions for longer than I'm comfortable admitting before someone in a comment section casually mentioned the prescription prepayment certificate, which basically caps what you pay for the year no matter how many items you're on. I did not want to do the maths!

Classic ADHD tax. The info iss not even hidden. It just lives in a leaflet or I'll-do-it-later.

Half the stuff that could make life cheaper or easier is sat behind admin, phone calls, and eligibility wording clearly written by someone who has never had six tabs open in their head at once. So we leave it. Support you're entitled to isn't much use if unlocking it needs the exact executive function you're already short on.

People in here have mentioned all sorts over the years. Right to Choose to cut NHS assessment waits. Access to Work for stuff at your job. DSA if you're studying. Council tax reductions, PIP, railcards, the lot. Every time someone posts one there's a little wave of wait... wat in the replies, which tells you everything about how well any of it is signposted.

So, opening it up: What entitlement, benefit, discount or bit of support did you only find out about way too late? This is great ragebait for the Daily Mail journalists here who have been hitting us hard later, so do your worse ;-)

A recent study published in The Lancet Regional Health – Europe suggests that attention-deficit/hyperactivity disorder remains substantially underdiagnosed in England, despite a recent surge in recognized cases. By analyzing millions of medical records, researchers found that the rate of formal diagnoses falls far below expected global averages, especially among older adults. These findings highlight an ongoing need for better access to diagnostic services across all age groups.

Full article: https://www.psypost.org/adhd-might-remain-underdiagnosed-in-england-despite-recent-surge-in-recorded-cases/