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 is very typical for women to have a diagnosis of social anxiety or bipolar for it later to become apparent that its ADHD.

I’m not saying this in a goady way at all, but I wonder if it’s actually the other way round - literally every diagnosis now is ASD/ADHD. In fact I can’t remember the last time I saw somebody diagnosed with anything else, in terms of behavioural difficulties or problems coping with day to day life.

I worry the spectrum of symptoms is now so wide virtually anybody who isn’t very NT appearing can fit a diagnosis, and therefore it’s becoming a bit meaningless. Perhaps breaking them down into several conditions would be better and more specific.

I worry the spectrum of symptoms is now so wide

It's the diagnostic criteria that matter, not 'symptoms' -

And this quite frankly is why nhs trusts and education often refuse to accept a private diagnosis for ADHD and autism spectrum. It has long been known that many private clinics will over diagnose. A private diagnosis just cannot be allowed to trigger an NHS or educational provision.

I do agree, actually, that some posters can be very dismissive of people who are not neurodiverse. Life can be really challenging for anyone, and neurodiversity is one of those challenges but by no means the only one. There shouldn’t be a competition over who has the worst of it. We all need compassion for each other.

Having said that, there is context to the post you quote, and others on this thread, which is that they are written in response to the challenge that people with ADHD who have succeeded on some measures of what might be considered life achievements don’t have any problems. I read them (and wrote my own) as genuine attempts to explain what is going on under the surface.

Right. So, if ADHD is affecting your life to the extent that you can't actually cope, a diagnosis and meds/life coach would probably be helpful. But I come accross people in increasing numbers who are not experiencing those difficulties in any meaningful way but still want the label.
I was diagnosed (ADD) many years ago, but never medicated, and not 100% convinced my issues were not actually trauma related, so I do completely understand the obstacles of the symptoms. I also understand that, as someone who has an OK career (yes after many detours..) and can behave professionally at work, sort my direct debits out (after much procrastination) It would be dishonest to call myself disabled.
I knew what I said would be met with howls of "ableist!" but that is so far from the truth. In fact it's the opposite; rather than being discriminatory toward people with disabilities I am trying to protect them by pointing out that ADHD and Autism are conditions that can make some people's lives really difficult. Every third person claiming a label diminishes those struggles, and makes it less likely that they will get the help and support they deserve.

I agree completely Toothbrush.

One of my friends has a history of mental health problems. She has been hospitalised at one point.

She's waiting for an asd assessment on the NHS.

But talking to her, it doesn't sound like ASD. I suggested she look at the symptoms for ADHD in women.

She said she's ticking ALL the boxes for adhd but not ASD. So she's going to talk about it with her GP. It's never been suggested before.

She looked up the medications she's had previously. She's tried loads with no joy. The only one that's had any positive effect was one she's since found is sometimes used for ADHD. She had no idea about this previous to my suggestion. It's an unusual medication for depression.

We also know that there has been a high level of misdiagnosis of ASD for ADHD particularly in women!

I just can't help but think that the BBC are coming at this subject from the wrong angle.

There is a clear problem which is hitting women particularly badly. And it's women who are most likely to be negatively impacted by private misdiagnosis. And the stigma from now having an 'unreliable' private diagnosis. And be put off trying to get a private or NHS diagnosis.

I'm really quite upset and don't think it's responsible journalism on the basis of what the BBC news article has put out. There's too many ommisions which are crucial here to understanding whats going on in full.

Maybe the programme will cover these but I'm not hopeful.

This panorama doesn’t surprise me at all. A whole lot of money to be made, people will act unscrupulously. I have a friend who works for a new company who’s purpose is to edit and check reports for private clinics. They are churned out by the bucket load and often don’t even have the correct named on them. They are certainly not detailed assessments.

As for the drugs, I fear they’ve become the new ‘mothers little helper’. There will eventually be a big blow up of this scandal. We are a drug dependent nation who want a pill to fix literally every ill, inconvenient emotion and behaviour.

But in the current situation that could leave children struggling without effective support for years with waiting lists what they are.

What would make more sense is some agreement of what a private provider needs to have done in diagnosing. Some Local Authorities for example will accept a private ASD diagnosis if a proper ADOS assessment has been done. It could be that an ADHD assessment MUST have been done by a psychiatrist and MUST include elements that the NHS requires.

Despite having no formal financial education (haven't studied maths since I was 15) I got into banking.

Started in a call centre / admin role at the end of 2017 and worked my way up into pure theory / decision making roles. I worked really long hours, did a lot of overtime and changed projects frequently.

I was fortunate that since I was so obsessive I performed and interviewed well the majority of the time.

What would make more sense is some agreement of what a private provider needs to have done in diagnosing. Some Local Authorities for example will accept a private ASD diagnosis if a proper ADOS assessment has been done. It could be that an ADHD assessment MUST have been done by a psychiatrist and MUST include elements that the NHS requires.

I thought that's what DSM V or ICD 11 did?

This is what the specialists leading explorations into the gap between male / female diagnostic patterns are saying.

These are some of the most respected individuals in the NHS - not private practice.

I suspect there is over diagnosis privately. But I think this points to abject failings within the NHS rather than pure failure privately.

As I say upthread, there are clear issues with female diagnosis because all the criteria is based on male presentation. There's reams and teams written on this.

Why? Ask the question. Why?

Don't say that can't be right without having a clue. Ask why it could be.

I don’t consider myself disabled by my ADHD either, and have been criticised because of that. It doesn’t mean I don’t think others are. I have family members whose ADHD causes them to function extremely poorly.

I am also not medicated although I hope to see whether I can find something that helps. But in general I get on by. I certainly have never for one moment considered applying for any benefit on the back of this.

My diagnosis has led to self-acceptance and a far better understanding of my strengths and weaknesses. It’s so valuable to me. I can say without doubt that had I been diagnosed earlier, I would have had a happier and better life. I have come off a treadmill of mental health treatment because I now understand that my symptoms have been those of cyclical burn out and RSD. So although I am not disabled by ADHD, I cope with life an awful lot better now than I used to.

They aren't clear at all. This is why it takes any psychiatrist (NHS or private) a couple of hours at least of talking about your symptoms and history in detail. Most people fit the symptoms in the list sometimes. The point is to figure out how often is outside the normal range and how much the impact of the symptoms is outside the normal range. You need to look at the big picture.

Of course this means there is also a lot of subjectivity. The first NHS psychiatrist I saw said that because I had a degree, was (still just about) employed, had a roof over my head and was (still just about) in a long term relationship it couldn't be ADHD. I was then diagnosed privately. Like the op I didn't trust my diagnosis but then the second NHS psychiatrist I saw said it was very clearly ADHD. All subsequent NHS psychiatrists have confirmed this (in my trust the consultant seems to change every six months so I have seen a lot of different ones) but their knowledge and interest in this subject definitely varies.

Op, what are your options. I assume you have tried the usual advice: working harder, trying to be more disciplined and having more will power. Has it worked? If not is there anything else you can try that you haven't already?

(Also, things that might genuinely help: eating and sleeping well, exercise, ruling out other disorders, nutrient deficiencies, etx)

I still doubt my diagnosis every day but without meds I am wasting my life. I have tried for decades to "try harder" and I just couldn't. I can neither work nor do anything meaningful in my leisure time so I've decided that even if I am just lazy, crazy and stupid if the meds are the only things that help me not to be lazy, crazy and stupid then I will take them.

Great post.

It's also available to watch on iplayer now, but I'm currently (being unproductive) at work so will watch later

@Garethkeenansstapler

You’re sort of missing the point.

For NT people who get depressed, therapy, medication, intervention etc very often improves circumstances. Because they are designed for NT people. The foundation of these people if you can imagine is made of bricks; they have a lot to build upon in that their basic functionality is recoverable, because it was there in the first place.

For ND they attend the appointments, take the drugs, do it all…. And largely it doesn’t work because we are fundamentally wired differently. The foundation is sand.

I’m talking like people who have a top programmer job, but have difficulty with organising how they brush their teeth.

Manage to paint beautiful pictures, but cannot cook a meal.

Have postgraduate degrees, but cannot drive a car or manage to dress themselves half the week.

Elaborate mirages are created to cover all of these deficits up, so they can fit into society and not endure social exclusion or ridicule. But it is hugely exhausting.

A NT person who is depressed will not largely hide it from the world, a ND person could be on the verge of suicide but have just aced an exam or done an excellent presentation, run a marathon. In fact this is the time they will be at their most vulnerable.

The fact is NT people are substantially more likely to have good mental and physical health and they are less likely to suffer physical and sexual assault and premature death. Statistically NT do have it better and that inequality needs to be addressed.

The reports seem to be suggesting that some of the private diagnoses are being made by under-qualified medical professionals and with a less thorough assessment. I presume this can still lead to a statement that the DSM criteria have been met, but with less confidence in that judgement. It doesn’t necessarily mean they are wrong either, but there becomes room for doubt on the basis of process.

I feel awful for those who are now doubting their diagnosis. But seriously, pharmacists doing ADHD assessments?

I recommend reading any book by Russel Barkley..if what he says applies to you then you probably do have ADHD.

SOME local authorities won't refer any children through schools now. (Friend is a teacher in a neighbouring council area). But SOME will. SOME won't refer kids performing at expected standards even if they are clearly under achieving.

DS is being treated differently to a child who could live 2 miles down the road. Its been made very clear to me and looking through the difference system in each council area from MN posters this is really obvious.

How the fuck is that right?

And that's NOW. Nevermind 30 years ago.

It's already a postcode lottery just with schools.

GPs are no different.

We know that there are massive inconsistency over other types of referral in the NHS already too.

This is interesting as it seems to be received wisdom amongst the online ADHD support groups I watch that the stimulant medication won't help you unless you actually have ADHD. Almost that this provides proof your ADHD is genuine.

The ADHD groups are wrong - Ritalin/Concerta are stimulants that work on anyone (and there is plenty of evidence to show that).

But most of the Drs also work for the NHS (they do private work on the side) and it's the same money they're making wether they decide you do or don't have it? You pay for the assessment - they don't give you the money back if you don't have it!

I mean all the article proves is that anyone can go to a doctor, lie about their symptoms, get a diagnosis and receive treatment for it. I could go to my GP tomorrow and tell them I think I'm depressed, having suicidal thoughts, sleeping all day and neglecting my house and I'm pretty confident they'd suggest we treat my depression.

BUT if I went to the same GP and said "I'm a journalist doing an undercover report on how easy it is to be a diagnosed with depression" any decent doctor think twice before diagnosing me and giving me medication. As I'm sure those private doctors would have if they'd been told up front he was a journalist like the NHS was.

The other question you have to ask yourself is... why bother if you don't genuinely think you have it? To get a hold of medication? You can find them a whole lot cheaper than the £500-£1000 it costs to get a diagnosis and the £150-£200 a month it costs you to fulfil the prescription, and all that for what is essentially a microdose of speed that you can get from any local dealer or the dark web ? Why would anyone actually bother? £10 and a snapchat account will get you what need ffs.

And if they DID go to all of that bother despite not actually having ADHD, the chances of them actually getting on with the medication enough to take it long term are negligible imho. Christ I know loads of folk with a diagnosis who are terrible at taking their medication because of side effects, or because they don't really like the actual "normal" effects of them anyway. And even if this non-ADHD person got on with them and found they made their life better then, what? What's actually the problem? They study a little harder or get a little better at doing their laundry? Whelp! We can't be having that, can we? Scandalous!

The real scandal here is that people are having to fork out hundreds of pounds for private diagnosis because the NHS waiting lists are years long and access to medication they need to function normally is so restricted. 🤷🏻‍♀️

Cannabis is another one... pretty sure you can go to a private doctor and get it on prescription from a company that is owned by an MPs husband, or you can get it from the dealer round the corner, but not the NHS. So is it allowable or not? Is it bad or not? Why do people care so much about what other people choose to do with their health / bodies / lives?

I understand but I'm not assuming they never had any issues before hand. I'm talking about those people whom by their own admission didn't.

Adhd is a very real disability and affects all aspects of lives. If people acknowledge they have never been impacted by it growing up then its reasonable to be sceptical.

Well, I would totally agree with that. And they shouldn't be diagnosed if that's the case as one of the diagnostic requirements is that you are able to demonstrate (in whatever way practical for your circumstances) that you have been affected throughout your life. If people are being diagnosed without that happening, then those diagnoses are highly questionable.

Then problem with mental health diagnoses (and I'll lump ADHD in with that for present purposes, even though it's a bit different!) is the reliance on self report! People can read up about all the symptoms, convince themselves they have X or Y diagnosis, go to the psychiatrist and report all the symptoms they've read about. The psychiatrist ticks off the checklist and diagnoses you. It actually is pretty much that simple! A better psychiatrist diagnosing ADHD should ask for corroborating evidence from family and school if kids, or family/others known since childhood and maybe school reports for adults. But even with corroborating evidence, it's still just self report. Schizophrenia and Eating disorders being the exceptions (and these are not over diagnosed or in fashion labels at the moment and never will be, due to the need for more than self report!)

If we all self diagnosed medical problems and reported the symptoms to a gp and they didn't have to take bloods etc .. just diagnosed based on the symptoms, then we'd all be walking round with cancer diagnoses, heart problems etc .. ! Most people worried about X or Y go to the GP and the blood tests rules out what they think they have in many cases!