To wonder if I actually have ADHD after all?

[FlipsFlops]

I was diagnosed with ADHD last year at a private clinic after getting nowhere with the NHS. I did a fair bit of research and went to a named psychiatrist who specialises in treating ADHD and went in with an open mind not necessarily expecting a diagnosis.

Somewhat to my surprise I was diagnosed very quickly (I'd filled in lots of very lengthy forms before my assessment and off the back of that was told I was a clear cut case), and strongly encouraged to try medication (I haven't yet).

It's taken a bit of courage to tell family and friends - some have been supportive, some a bit sceptical ("but you seem completely normal?" "yeah I've seen all those TikTok videos too").

I still struggle a bit accepting the diagnosis and am prone to beating myself up about it (it's not ADHD, I'm just lazy, don't try hard enough, etc...).

Then I've seen this BBC news report today about the "ADHD private diagnosis scandal" suggesting people are being diagnosed by private clinics who don't actually have ADHD.

ADHD: Private clinics exposed by BBC undercover investigation - BBC News

Have I just been taken in by all the TikTok nonsense (even though I don't use TikTok) and exploited by an industry trying to sell me expensive drugs?

Or do I have a genuine neurological condition that's being called into question by journalists looking to turn everything into a some kind of scandal?

I don't honestly know what to think any more.

It’s says the NHS specialist agreed to assess him because he’s so concerned about the practice of private clinics. Do you think the private clinics were just having an off day? Obviously they would act differently if they knew they were being filmed! That’s the point of undercover reports, to find out what’s actually going on, which is often different from what the clinics say is going on.

I think it's true though and you're misrepresenting it. No-one is saying NT people have an easy life - the point is that things NT people often (not always) take for granted being able to do are not easy if you have ADHD. Everyone has struggles in life and no-one's denying that.

Attitudes like yours are why I don't tell many people I have ADHD.

This. 100%.

@DizzyRascal But I come accross people in increasing numbers who are not experiencing those difficulties in any meaningful way but still want the label.
Believe me I don't want the label or the condition.
I hardly ever mention it in RL because of all the hatred and disbelief.
I sought a diagnosis as a way to try to help me come to terms with my life, not to provide a route to get help (there isn't any) or to provoke debate at dinner parties.
I wanted to understand why I can't do what work/society expects.

I'm saying it would have been a more equal comparison if the NHS assessment wasn't aware of filming either. But it wouldn't have fit the narrative. And he wouldn't have gotten an appointment for another 2-5 years, depending on where he is 🥴 Just as he had a good assessment with the lead of a specialty adult ADHD service in the NHS, there have been many stories of NHS assessors dismissing people as having it simply because they have a job. It's just not a balanced representation.

As I said in a previous post, the assessment from Harley Psychiatrists was unbelievable, but (luckily) that wasn't my experience with private assessment, nor the experience of many others.

I do wonder how many companies he went to before he got assessors that fit the bill. Interesting that one of the biggest private assessors (Psychiatry UK) wasn't used.

I do object to this ‘NT people can’t possibly know what it’s like to be depressed/antisocial/to struggle’.

@Garethkeenansstapler that's not what I said. Of course NT people know what it's like to be depressed or anti social or struggle. What an NT person won't understand is being completely unable to understand, verbalise or regulate their emotions at all times, even when they are not feeling depressed. The complete overwhelm that even small tasks bring, the lack of executive function and how it impacts literally everything. There is a world of difference between not being able to do a huge to do list and being unable to do even a basic task- like eat or sleep or wash because it's insurmountable.

ND people don't have a monopoly on struggling, but it's a world of difference in dealing with it. The self harm and suicide rates of ND people speak volumes.
A little understanding and common decency would make a huge difference to a lot of people.

I find 'don't be a dick' fits great for most situations. So maybe just don't be a dick and stop dismissing other people because they don't fit your idea of something.

This is literally talking about the same article, which looks at changes in rat brains. The journal mentioned is not a great journal and it is completely irresponsible and nonsensical to extrapolate from rats to humans. It’s like saying we can cure cancer because we pretty much can in mice!

Fgs! It's a scholarly article in a scientific journal. What exactly are your credentials

Also when you’re already living with incredibly high levels of anxiety from ASC being hit by anxiety from other situations NTs suffer with too means it us undoubtably going to be harder for somebody with ASC to endure and recover from.

Same here. It helps me be less hard on myself. I've not found medication or the ridiculous CBT they gave me life changing. Perhaps if I'd been diagnosed when young and pre-kids I'd have been able to follow a more successful path with medication helping but by the time I was diagnosed I was too entrenched in the coping life I'd managed to establish. Id like to know I could get more help if anything happened to DH, as I wouldn't have the ability to run a house solo, look after finances, look after myself and have a life outside the house.

I'd so much rather not have ADHD, even if I like some aspects of what it gives me, it's a daily struggle, and for women, even more so when peri and menopause hit.

Why are other people so bothered by others' ADHD diagnosis? Has anyone reflected on that?

Interesting that one of the biggest private assessors (Psychiatry UK) wasn't used.

The cynic in me says they were used, they just didn't make the cut because their process didn't fit the journalists' narrative...

That's the one that is always recommended to folk on here and reddit who are in the UK, and I've also seen posts from people who didn't get a diagnosis so...?

It’s so weird isn’t it. I’ve suspected for some time that my DD has autism but I’ve been so surprised at the reaction from friends & family when I’ve mentioned getting her assessed. Everyone is so fixated on this idea of not labelling her & saying that once she has the diagnosis she will be hugely limited. People seem weirdly passionate about it. Of course that’s not my motivation for getting her diagnosed at all.
Labels seems fine when it comes to sexuality & gender though 🙄.

There's a double whammy here for many people. A lengthy face to face assessment with multiple components, followed by a cooling off period before starting meds will appear to be a more challenging pathway to someone with ADHD than a 45 minute online chat and an immediate prescription. Not to mention a lower entry price.

If you we're choosing between services, I can see why the less thorough options might look attractive.

Well, since you asked…

I’m an academic, with published clinical trial work in the New England Journal of Medicine and the Lancet amongst others, and basic science published in Science and PNAS. I work at one of the world’s foremost clinical schools and hold several million pounds in research grant income.

None of the above changes the fact you have linked to a single mediocre article about changes observed in rat brains and attempted to infer something about humans.

Burn 😉

Going through the process of getting a diagnosis for my DD 13 at the moment.
We have agonised for years over doing it because we didn't want a label, wondered if we were imagining things, wondered if she was bad enough or if they'd look at us as if we were mad, weren't sure about medicating and was there any point if we won't medicate.

I've been discussing it with schools since she was 6/7 years old, have a HUGE family history of ADHD, ADD, ASD and I have bipolar Type 2, plus DD is very dyslexic (school had all the assessments done as soon as she was old enough it was so obvious).

NHS has proved hopeless - can't even get an initial appointment to discuss with the GP and they can't tell me when they might have a routine appointment available. I'm told it's at least a 2 year wait in my area for an assessment even if GP agrees to refer, so we have found the money and are having it done privately in the hopes we might solve something before GCSE exams.

I have a child who aces IQ tests and has failed to ever be 'on target' academically - but is never going to trigger alarms because while she's not on target for her potential, she'll pass everything... just. DD is becoming increasingly anxious and struggling more and more with society's expectations that she become more organised and independent and I am exhausted and tearing my hair out living with my non-sleeping fidgety child.

Having found a private psychiatrist (with 30 years as a leading NHS psychiatrist under their belt), had to complete loads of forms and letters - and get the same done by school and others - I'm now just overjoyed to see this programme come out.

I don't dare tell half the family what we are doing as it is - they don't believe in it and disapprove of medication. Sigh. This is just going to make things even worse.

Would have been a little bit fairer if the NHS hadn't been given a heads up in advance.

I have linked to just one scholarly article (this is mumsnet not a scientific symposium), but with your academic credentials you can surely verify that there are in fact numerous other studies about the physical side effects of Ritalin abuse - I came across them when finding the one I cited (and prescription of Ritalin for misdiagnosed ADHD is inappropriate use of Ritalin whilst not strictly abuse)

@TrollyHolly All mental health or neurodevelopmental diagnoses are essentially subjective because there isn't a blood test, X-ray to confirm it.

You are very very mistaken, quite possibly one of the most ignorant comments I've read.

When I saw the article this morning I thought, ‘Oh good, more fuel to the ADHD stigma fire using a sample size of one’.

I feel so ashamed of my symptoms, I’ve struggled with them my whole life but it never occurred to me it could be ADHD as I thought it was only something naughty little boys were diagnosed with. At school I was always told I was talented but lazy and not applying myself. I found the content easy but completing the actual work was unbearable for me, I struggled with focus so much and in the end I just stopped going. Didn’t even sit my GCSEs. I struggled similarly in work. I worked in offices and couldn’t cope, I felt like I was jumping out of my skin trying to concentrate and ended up doing the bare minimum, which made me feel like a lazy piece of shit. I ended up having a total breakdown and was diagnosed with bipolar disorder (which I’m not sure I agree with but it runs in my family), but even when it stabilised and I was on medication the other problems never went away. I realised I needed to train to do something fast-paced so started university, by which point the problems really became apparent and someone mentioned ADHD.

It took me a long time to approach a professional with it because of the stigma attached. I’m intelligent, I have a good work ethic and I want to do my best and succeed, but as it is I can’t. There’s this massive wall that I hit every time I need to focus or meet any kind of deadline. I will be in tears at my laptop, paralysed. I’ve deferred modules more times than I can count. It’s nearly 10 years since I started this degree! It’s so embarrassing. The work isn’t academically difficult for me, I get firsts, it’s just getting myself to do the actual work that is the constant struggle.

I’ve been on the waiting list for over two years now. Since I learnt about ADHD I’ve started to introduce different ways of studying, like making slide presentations instead of writing notes and scheduling 15 minute sessions instead of trying to force myself to do two hours at a time. But I need help. Nobody knows the full extent of what I experience because I’m too ashamed to admit it. The way things are, I have no idea how I’ll ever manage to hold down full time work again without having another breakdown. It’s mortifying, I feel like such a worthless piece of shit sometimes.

Weirdly, the only time I’ve ever felt able to properly focus is when I was prescribed aripiprazole for severe depression (I can’t tolerate antidepressants). I was like a different person. Turns out it’s used off-label to treat ADHD. Unfortunately it also gave me horrendous side effects. I persevered as much as I could but ultimately had to come off it and I descended into chaos once more.

Yep, side effects of Ritalin are well known. Not much to suggest that adverse effects are different between NT and ADHD cohorts though; documented AEs in ADHD children taking Ritalin/methylphenidate are (for example) disrupted sleep and decreased appetite, which were disingenuously suggested by that blog post to be limited to NT individuals taking methylphenidate.

Also @manontroppo, hopefully you are almost exclusively an academic rather than delivering patient care, because this comment in your initial response to me "Honestly, this kind of psedo bullshit is half the problem!" was condescending and dismissive and I wouldn't like to imagine your bedside manner

Sorry, I thought this was Mumsnet, not a scientific symposium clinic ;)

@Righthandman I think this idea that a large proportion of leading medics/psychiatrists are asd or adhd is a myth. Mainly because I have known two with diagnoses be moved to desk jobs or pushed out entirely due to their absolutely dreadful people skills, despite having immense intelligence and ability, they couldn’t do very basic parts of the job.

I’m sure somebody has done a study on career pathways somewhere and sure there are a lot of prominent ND individuals in STEM type roles. But ultimately, treatments commonly utilised today will have had substantial input from NT people which outnumber ND and this would dilute beneficial effects for ND as it swings the pendulum the other way.

Going from my own experience, while there are a lot of undiagnosed “hidden” people, I think it unlikely that ND alleles would come to high frequency within a population, because they don’t breed as much; it involves having a successful intimate relationship with another human being and then having noisy, disruptive, energy absorbing children. From looking at my own family, a large number couldn’t form relationships easily, didn’t marry and were far too absorbed in their special interests/careers to concern themselves with reproduction. Of the ones that did have children, you’re talking 1-2 and of these 50% reproduced and so on.

What I think may be contributing to higher incidence of ND now aside from greater understanding/awareness is perhaps environmental factors and assortive mating. ND tend to seek each other out… I was diagnosed post diagnosis of my DC and around the same time as a lot of friends children and then subsequently the friends… unknowingly we have essentially congregated with ND partners and ended up with amplified traits in offspring.

I actually prefer straight talking from my doctors

@Sakigake You are a valuable human being, you have overcome adversity and persisted where others would have walked away. You have used your intelligence to develop helpful strategies and have proved repeatedly that you are capable academically. The length of time your journey has taken does not diminish the value of your achievements.

Please be kind to yourself and acknowledge that this is more of a challenge for you than the vast majority and you are still out there doing it.

Try and begin work on the day it’s set as if the deadline is tomorrow. Put signs around your home to encourage you to get back to it and write positive affirmations. Forget about work. Work isn’t what is happening right now. It is irrelevant to the current situation and sitting worrying about it and using it as a big stick to beat yourself with won’t help matters.

Seek support within Uni and from any friends, family as much as you can. Remember to take time to decompress and do things you enjoy.

For a lot of us it can take a while to find our feet. There will be frustration and disappointment about progress along the way. Try and not measure yourself against others, focus on your goals and just keep on truckin, you will get there 🌟