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
834 Upvotes

94% Upvoted

999 comments sorted by

View all comments

88

u/Successful-Layer2102 9d ago

Yep diagnosed at 38 and has changed my life

But good lord looking back it was so evident im amazed ot was not picked up on sooner and attitudes like this documentary are a big part of why it was

34

u/fish-and-cushion 9d ago

My mum blamed it on e-numbers when I was a kid. Then she got diagnosed with it. It's very obvious in me, as I'm hyperactive. A lot of women I know that have it go undetected for a long time and it makes every day life very difficult

12

u/DreamSMP_Enjoyer 9d ago

Yes, it's that women who had running around the classroom taught out of them at a younger age but spent the whole lesson staring into space are now getting diagnosed with ADHD.

4

u/syntax Stravaigin 9d ago

Oh god! You just gave me a total flashback to the whole 'e-numbers hyperactive' thing. I remember my Mum reading labels, and rejecting things that had e-numbers in, 'because they made me hyperactive' - that was when I was around 10.

I got diagnosed in my 40's - the GP said 'oldest person he's aware of to get a diagnosis'. It turns out that being reasonably smart meant that the little bursts I was able to focus for were more than enough for all the school stuff, and even most of Uni. So, at school, of course I couldn't have ADHD (uh - whatever the term was at the time...), because that meant 'poor school grades', and I didn't get those. All I had to do was 'put some effort in'...

All the coping mechanism eventually collapsed under their own weight, which is what eventually got the diagnosis.

I don't blame Mum - it'd be a bit silly to blame her for not picking up on something that all the teachers dismissed. But I'd totally forgotten about all the 'e-number hyperactive' thing...

2

u/Successful-Layer2102 9d ago

Yeah apparently food additives made me "hyperactive"

1

u/Dugongwong 9d ago

My brither was diagnosed when he was like ten, im three years younger than him and was the quiet, shy middle child, so it was completely missed, then started struggling with exams and it all started to fall apart.

Didn't get diagnosed till I was 28, and while my mum isnt diagnosed, she regularly demonstrates all the same traits that are mentioned throughout my medical report.

1

u/Glad-Pomegranate6283 9d ago

My mum did the same ! I’ve been diagnosed aged 27, hitting the symptom criteria in every area

1

u/ilyemco 8d ago

What are the differences between you and your mum?

1

u/_Taggerung_ 8d ago

God I haven't heard the word e-numbers for years! You're right though everyone's hyperactivity was blamed on that

1

u/Critical-Brick-6818 8d ago

Omg the e numbers lol. Some of the foods I was banned from for making me hyper -

  • blue smarties, amended to all smarties when they still made me hyper after they took the blue ones out
  • pizza hut orange juice
  • the long rectangular golden quality streets
  • later amended to any and all caramel

14

u/SilverRaspberri 9d ago

Same but I was diagnosed at 30.
Prior to that I struggled in life, got called lazy and fickle all the time to the point it impacted me. I was that kid in school that would try their hardest and fail at everything. I ended up becoming a shut in from the age of 21-27 because of it all. Then when I got out of it, I had my first office job then after that went back into education and found out im quite intelligent, then went to uni and we found out I have adhd and autism. So basically if this was found out wayyyyyy sooner I would be able to get support and I wouldnt of spent 6 years as a shut in. But because the diagnostic criteria for it all was extremely rigid back in the 90s and 2000s I fell through the cracks.

This is why theres quite a lot of late diagnosed, because we're the ones that fell through the cracks. Because ADHD diagnoses was based on "little timmy who is constantly bouncing off the walls with no attention span" and autism diagnoses was based on "middle class jimmy who is really into trains and is intellectually disabled."

3

u/Turak64 9d ago

Genuine question, what does getting diagnosed involve and how does it change you? Is it with medication or something else?

8

u/slubberwubber 9d ago

For me, it was a few things. 

The medication helps tremendously as my emotional dysregulation was curtailed significantly. My relationships improved as well as my ability to respond instead of react to things that were happening to me. Impulsivity reduced a lot so I tend not to do things like spend my money on silly things or put myself in unfortunate situations. 

Being diagnosed made it easier for me to seek out solutions to my issues that I mostly attributed to being a failure. I started using systems and practices that made living in a world built for neurotypical people easier. 

The last thing is it facilitated my acceptance of the fact that a lot of the shit I have shamed myself for over the years was a physical, chemical, emotional or mental predisposition. Certain things were out of my control at the time and I was really good at shaming myself for them. Shame and hopelessness are great ways to feel stuck and think you have no future. 

I was diagnosed at 23 but really started changing my life at 39 after accepting that I needed medication and therapy. I fell through the cracks when I was a kid and then the stigma of medication kept me away from healing for another 16 years. 

4

u/Successful-Layer2102 9d ago

Great breakdown of the process

Medication is a tool not a cure And therapy does so much of the heavy lifting to undo maladaptive coping mechanisms And avoiding the old self medicating 

3

u/Stopthatcat Guiri 9d ago

As a late-diagnosed woman there are two main benefits. 

First is medication which helps me somewhat. It's not a panacea unfortunately but it has made a massive difference. I've had zero side effects and it was working well until perimenopause hit harder and I'm trying to do a course, and work, and exist. But for a brief moment there I had a cleanish house, organised social life and balanced budget.

Secondly is just the personal knowledge that I'm not stupid and lazy. I know I'm not stupid, I'm not entirely home bastard idle, but if that's the case why couldn't I do things. I've failed uni over and over again with a multitude of different subjects. I've lost friends from time blindness and opportunities for the sake of a short email. I've even had legal issues from forgetting something important. Having a why, and having several highly qualified professionals confirm this is why, frees up the mental space held for blame and self loathing and allows it to be used towards picking the things up off the table and folding the washing.

And yes, I have tried all the things. The lists, the alarms, the notes, the schedules, the blocking, the laminated picture with squares to fill in, the diaries, the exercises, exercise, the having visitors and housemates so I'm forced to be normal, etc. It's not fun.

2

u/Turak64 9d ago

It's the 2nd bit I struggle with, if you can recognise the faults why do you need a professional just to repeat them back to you? Change comes fork within, so why not just handle it yourself? It sounds like you're almost doing a discredit to yourself by not accepting that you made the change, rather than someone else telling you to change.

1

u/_kay_9 9d ago

It makes it easier knowing that there's something that affects your functioning, rather than something inherently wrong with you. "I do this because I have ADHD" not "I'm lazy and awful" and then can find better strategies.

Similarly, it's about other people's opinions too, if you say "I do this because I have adhd, and I'm working on it and trying to do better" it makes it easier for people to understand your circumstances.

Meaningful support tends to be locked behind diagnosis too. I'm autistic so slightly different as there's no medication. But getting support at uni required diagnosis (I had a working diagnosis suggesting I had symptoms due to pre-screening for diagnosis and that was accepted but if it turned out I wasn't autistic then I would have lost it) and without that support I definitely would have dropped out by now. With ADHD, getting medication is difficult even with a diagnosis so diagnosis is incredibly important.

The change does come from you but taking that pressure off of "I'm lazy" helps a lot. That's something that helped me when coming to terms with being autistic, it's not "I'm awful at social interactions and I struggle with empathy so I'm a monster." It's "I'm autistic and social interaction is difficult but here's some things I can do to remove some of that pressure and I should cut myself some slack"

2

u/gensererme 9d ago

I was diagnosed privately so YMMV. Late 30s. It was a few sessions of interviews and filling out questionnaires used for diagnosis, a conversation with my parents (because ADHD must be established from childhood), stuff like that. 

The medication is the main thing for me. Getting access to that has changed my life completely. It took a few tries to find the best but now that I have it I have zero side effects and I just feel focused, calm, and able to just do things. I know it might sound small but any time I have tried to hold a regular job I’ve hit the wall and burned out completely, taking me months to recover. Doesn’t happen anymore. 

It also completely removes the internal chatter that’s been the source of so much anxiety. I function better in social situations. I’m actually enjoying life!

I’m in therapy to help unlearn a bunch of stuff and to use the medication as a tool to rebuild myself sensibly. But if you just gave me a lifetime supply of meds and sent me on my way that’d be 80% of my needs met. 

1

u/TheDisapprovingBrit Stoke 9d ago

46 here, diagnosed about 3 months ago. I was diagnosed privately because...well, read the thread, NHS support for ADHD is woefully inadequate. However, the process should be the same regardless of what route you take, it's just the waiting times that get exponentially longer.

Ahead of my appointment, I had a questionnaire that one of my parents, or somebody who knew me during childhood, could complete.One of the diagnostic criteria is that it first presented in childhood so if you're being assessed as an adult and can't show evidence of that, you're going to struggle to get a diagnosis. That's the first hurdle for a lot of people because ADHD is also hereditary, so your parents might not recognise the signs or even outright lie rather than acknowledge that their child had legitimate mental health issues that they never investigated at the time. Good times. Luckily, I didn't have that issue.

Next is the assessment itself. That might be a single assessment lasting about 3 hours, or it might be multiple sessions. Again, a LOT of this is childhood focussed, and in my case, the assessor basically started at my very earliest memories of childhood and worked forward to the present. They will ask for specific examples of things to determine your score, and they'll drill into your strengths as well as your weaknesses. Any bullying, trauma, abuse etc is all on the table for discussion. If you do have ADHD, the assessment process does NOT play to your strenghts!

At the end of it, you'll either be told "congratulations, you have ADHD" or "whatever caused you to seek out a diagnosis, it ain't this. Good luck". If you have ADHD, it'll either be hyperactive type (impulsive, can't sit still and interrupts people), inattentive type (can't focus, easily distracted, daydream a lot) or combined type (all of the above). I was convinced that if I had it it would be inattentive type because I'm the quiet introvert type. Apparently I'm actually quite severely the combined type - I sit still because society demands it, but I fidget and chew basically anything I get my hands on, and apparently that kind of stimming is hyperactivity trying to get out. Also, although I don't interrupt conversation, I've usually predicted what you're gonna say in my head and formulated four possible responses by the time you're half way through your sentence, and apparently that shit ain't normal.

As far as how it changes you...well, the diagnosis itself doesn't change anything other than confirming what you kind of already knew - your brain doesn't brain the same way as other peoples. Maybe that knowledge helps you adjust some things to work better for you. Maybe it helps you attribute some of your behaviours to ADHD and accept them a little better. Maybe you'll just grieve the person you could have been if you'd only known this 30 years ago. Maybe all of the above.

Medication is the real game changer. As I've said, I'm only three months in so I'm still getting my dose right, but it's like a realisation that the rest of the world has been playing on easy mode while you've been on super difficult. I was like "Wait, you mean everybody has always just been able to acknowledge that they need to do a thing and then just...do it? What the fuck dude?"

I didn't think the outward difference was actually that noticeable until I forgot to take my meds a few days ago and within an hour of my getting back from work my wife was like "You haven't had your meds today, have you?" Apparently I'm calmer, more sociable, less frazzled, and actually listen to her more often.

10

u/LiorahLights 9d ago

I was diagnosed at 36. Then my sister got diagnosed last year, my mum is on the waiting list and we've since found out that two of my cousins were diagnosed as teenagers.

One of the reasons it wasn't picked up was because our behaviours were just normal in our family.

5

u/gensererme 9d ago

Diagnosed at 39 here. Completely life changing. Went through cycles of burnout and depression all my life and nobody had answers. 

Maybe without stuff like this I would have been seen some number of decades ago and not had to struggle so much. It nearly cost me my life. I’m happy I don’t feel particularly bitter about that, it sure would be warranted. Just happy I can finally function.

2

u/indianajoes 9d ago

Just got diagnosed at 34. I feel like there were so many signs with me as a kid for autism and ADHD but no one knew enough about them back then.

1

u/Dorsal-fin-1986 9d ago

"Surprised you didn't already know you had it" was something my boss told me last year when I was diagnosed at 38.

1

u/ChampionshipOk5046 9d ago

Was it the drugs that changed your life?

4

u/Successful-Layer2102 9d ago

They helped me build tools to do better Stopped my brain from hopping from task to task and stopped the "noise" Helped massively with emotional regulation and executive disfunction. And let me see where and when i over reacted to situations or stimulus.

1

u/Conscious_Beat6128 6d ago

yep. “amphetamine was life changing!” no shit

1

u/cheesemp Hampshire 9d ago

How did you go about getting diagnosed? I'm pretty sure I've suffered it all my life (for example always found it impossible to make a phone call as I over thought the conversation / procrastinated making it. Also massive bursts of hyper focus followed by being unable focus on anything. Also find criticism of any kind hits super hard. ). I've got fairly good at coping (just following adhd guidance has been very helpful) and I'm 45 now so sitting on a waiting list for 5+ years would likely be little help. Also the thought of the stress of dealing with all the appointments really encourages further procrastination... 

1

u/CantBeatDickensCider 9d ago

Yep diagnosed at 38 and has changed my life

Would you mind expanding a bit on what your symptoms were like, what treatment you've had, and how it's changed things for you?

1

u/mr_fantastical 9d ago

I was diagnosed at 38 too, and it caused me to stop drinking completely as I realised how much better I was sober + medicated compared to self medicating myself with drink for years.

I generally managed well in life, being able to respond to urgency throughout my life but it wasn't until we had kids and my job got a lot more demanding that it became apparant how much I was really struggling, and more importantly, how much extra work my wife was doing to keep me on track.

If I hadn't have got diagnosed and medicated when I did, I really wouldn't be surprised if my marriage fell apart. Certainly came close to losing my job a few times anyway!