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.

This is a bit like saying having one leg is not a disability if lots of people only have leg. Think.

I've found you do have to be careful who you talk to about ADHD. There's a lot of misunderstanding, sensationalism, and people pinning their own ideological perspectives to the anti-adhd mast.

If I do end up with a diagnosis I won’t be divulging it to anyone other than where absolutely necessary, e.g. university. I have only confided in one friend about my difficulties and she was very dismissive, said ADHD is just trauma/attachment issues, everyone has traits and it’s being massively over diagnosed, and in any case I couldn’t have it because I’ve managed to go to university (even though I still haven’t completed my degree nearly 10 years on!). She has a very fixed idea of what people with ADHD look/behave like and I don’t fit that image. It really upset me so I won’t be making that mistake again. It’s very isolating. No wonder people with ADHD are more likely to kill themselves when even the people closest to them dismiss their struggles so easily.

She means most mental health issues are on a spectrum - ASD, ADHD, bipolar etc

So she's saying if people at the milder end are diagnosed, what impact does it have on people at the more severe end.

I don't see an issue with milder cases being diagnosed, unless it comes to campaigning where there's a big privilege difference.

People who can mask any condition definitely get treated better in some ways. I know I do.

How many trainee psychiatrists have private practices? How do they manage with their different training rotations?

I wouldn't know....my post was referring to surgeon's didn't mention psychiatrists at all, you did.

Re MRI for neurodevelopmental conditions - there has been lots of MRI and fMRI studies but so far there has been no specific patterns that could be used for diagnosis. However, one recent study found autism fell into four specific groupings which also predicted symptoms. Which suggests that these conditions are a lot more complex than current diagnostic groupings suggest.

Excellent analogy. A few years ago I studied the biopsychosocial model of mental illness as well as neurobiology as part of my degree. I was drawn heavily to the ideas of Foucault and Thomas Szasz, who were very critical of psychiatry which suited me at the time as I’ve experienced terrible treatment at the hands of it. I thought a lot about whether things like ASD should actually be considered a ‘disorder’ given the percentage of the population with diagnoses. But the fact is, depression and anxiety affect a much higher percentage of the population and no one would argue clinical depression is normal. Nor would they argue type II diabetes, eczema or heart disease were normal. It’s about disability, not prevalence.

Cancer affects 1 in 2 people. But it’s not normal is it?

I’m sorry you had that experience with your friend @Sakigake. Two things I have noticed, that I expect will be true for you too:

1. there will almost certainly be people around you who also have adhd. Other friends or family members or other students.
2. some of these people will be self aware, and may be very supportive if you can have the confidence to be honest with each other. (It’s hard! Someone who has DC that are diagnosed or on the waiting list might be a good bet for someone who will be understanding.) But some will be quite hostile, or take the ‘everyone has traits’ dismissive approach.

The dismissive experience isn’t pleasant, but I think this happens where people don’t recognise the full extent of their own struggles as being potential adhd, but know that they work damn hard to stay focussed, for example, and are thus frustrated with others who speak up because their experience has been ‘well it’s difficult for everyone to focus so what’s the big deal?’ Does that make sense? I was a bit like that - assuming I was NT, and I was struggling with procrastination- well I had limited sympathy for someone with adhd (like me) because it didn’t look harder- because it wasn’t!

Sorry that’s all a bit circular but I really hope you see what I’m getting at. I hope you have more supportive experiences with friends in the future xx

That’s not what a spectrum disorder means. It’s not from mild to severe. It means there is a spectrum of factors and people will have some of them but not necessarily all. Some people may only struggle with a small number of things but be very severely affected by them, while others might have mild difficulty with many. If you meet someone with ASD who appears to be only mildly affected by it in one way it doesn’t mean they don’t have substantial challenges in another, which could really limit how they are able to live their life.

To an extent.

Someone with ASD who can work full time but struggles is completely different to someone non-verbal who requires 24/7 care.

I'm not convinced all the good PR campaigns from the high functioning group filter into better outcomes for the more severely affected.

Thank you for making this point @DeadSea95. It is difficult because we are left without good words to describe the difference in severity, but I absolutely agree that there is a big difference in privilege between the two groups. All the vanish adverts in the world won’t change outcomes for those requiring 24/7 care.

There is no milder end with NHS ASC and ADHD diagnosis. The thresholds to obtain a diagnosis are high and the diagnosis procedure is thorough.

Agreed entirely but that isn’t what the spectrum is. And it’s worth saying because, while someone who can hold down a job is undeniably functioning better in society in general than someone who is unable to live any sort of independent life, that doesn’t mean they may not be severely affected in their lives in other ways that have an impact on them their colleagues wouldn’t realise.

Its hard to know without knowing you. You may have adhd and slipped under the radar or you could have been falsely diagnosed. There is a strong history of adhd in my family and my observation would be that those with real / genuine adhd struggle to get an education, struggle with substances, can’t hold down a job etc. That’s why it’s a disorder, not just a different personality type. I struggle a bit with people who have stable jobs, families, don’t struggle from the impact of making impulsive decisions then saying they have adhd because if they did they would not have these outcomes.

Snap - I was also 28 when finally diagnosed. 8 years and 5 psychiatrists till someone twigged that my incredibly rapid and dramatic response to SSRIs was an issue... and had made things a lot, lot worse than it might have been.

Took another 10 years to find the right meds and now I am extremely stable with the odd blip here and there. I don't dare think how different my life would have been if it had been picked up and treated when I was a child.

And yes, if she does have that - or develops it in the future - I will do my best to make sure she can access the right support and manage it.

Fantastic that you are in remission - I have occasionally tried to see if I might be, but it hasn't proved the case so far. I hope yours is permanent!

Would you say that I never had “real” or “genuine” depression because I continued to work, didn’t abuse substances, etc when I was depressed?

I struggle a bit with people who have stable jobs, families, don’t struggle from the impact of making impulsive decisions then saying they have adhd because if they did they would not have these outcomes.

I have a job but nothing else on your list of approved qualifiers. Do I pass the bill in your opinion? 🙄

@Sakigake Have you contacted your university and told them you are awaiting assessment for ADHD? They should be able to support you more while you wait.

People who can mask any condition definitely get treated better in some ways. I know I do.

And worse, people who can mask are often overlooked and not given support they desperately need. It's easy to see, for example, what the needs are for someone nonverbal who needs 24 hour care and can't do anything independently and put that support in place (in theory, I appreciate in practise it's not black and white).

Now compare that to someone able to mask and when they ask for help it's met with the judgment and hatred some of the PPs here have shown because they present as ok. There is almost no support so when the mask slips you end up with severe outcomes, something like 1 in 4 women with adhd report they have attempted suicide.

@wnaderingmind I did speak to them about it recently but I can’t remember what they said. I know that said they were updating my disability record but I think I forgot to ask them what support is available. They keep pushing DSA but the last time I applied for it they wanted me to fill in all sorts of things and attend an assessment which I found too overwhelming. Plus I don’t know how it would actually help.

In terms of masking, how is this dealt with in an assessment? I mask well as my father was very strict and I was/am afraid of getting into trouble, and I’m also very self-conscious. For example, I was looking up the QB test. I fidget and move around like crazy when I’m at my computer but if I knew someone was watching me I could manage not to for a time because it’s so embarrassing. I don’t know how I’d get past this in the assessment.

I seem to need to experience some sort of stimulation 100% of the time. If I’m trying to concentrate, watch TV or read I’m constantly rubbing my skin or my scalp to the point it’s sore. I don’t even realise I’m doing it until my arm starts to ache. I’m also horribly addicted to nicotine and have been since I was 13. I used to chain smoke, 45-60 fags a day at one point. Then I vaped constantly but now it’s snus. It’s like ‘I’m bored! I know, I’ll have some nicotine to entertain myself for 10 minutes!’

Even watching TV alone isn’t stimulating enough, I have to also be doodling or reading. During a lecture I fill an A4 sheet doodling and then I can’t remember anything that was said.

I’m so embarrassed writing this but it also feels good to just get it out.

@FlipsFlops no i wouldn’t because depression is an illness not a neurodevelopmental disorder.

It’s like saying i’m dyslexic but i’ve masked it my whole life by being really good at reading. If you were dyslexic you wouldn’t be able to be really good at reading, that’s the definition of the thing.

My son has full on, medicated ADHD and I can tell you he cannot cope in everyday life without meds. He can barely hold a conversation, can’t attend regular school, needs to be constantly supervised like a toddler etc. The idea he could ‘mask’ this any more than he could mask his skin colour or other fundamental aspect of his character is absurd.

I have many of the same traits but according to the diagnostic criteria a psychiatrist should look at whether symptoms are a barrier to normal functioning before giving a diagnosis, and I have functioned mostly fine my whole life so i shouldn’t get a diagnosis, even though i am sure i’d get one if i went to a private clinic.

I haven’t watched the programme yet but read the summary and will watch it soon.

It’s very concerning to me that there is such wide variety in diagnosis.

DS has had 2 ADHD assessments and an ASD assessment with NHS doctors (referred via primary school and paediatrician) at a clinic that specialises in children’s health including SEN.
The assessments were conducted with input from the school and myself. So I have no reason to doubt they were valid.

All assessments came back that although he had a number of issues, he did not meet the threshold for diagnosis because his behaviour was not severe enough.

However due to my field of work I have seen ADHD reports from private clinics and I am certain that if I was to get DS assessed by them now he would be diagnosed with ADHD.

DS does struggle a lot with certain things, and we have had to give him a lot more support and guidance than my DD. But is it significant enough that I would be willing to give him medication with so many side-effects? (I have seen them first-hand).

Yes he probably could get higher exam grades if I got him medication - he’s another one of those ‘bright and has all the information in his head but struggles to get it down on paper’. He would probably seem more ‘normal’. But he does ok and is happy, and weighing it up, I just don’t know if the risks are worth it.

Career-wise we will guide him towards something that will suit him, knowing his strengths and weaknesses.

Maybe our expectations of what our lives should be like are too high. A lot of people on here have talked about feeling like a failure, or they feel other people manage their lives better, or wonder ‘what could have been’ and that their ADHD has caused this. I think it’s quite sad. There should be room in society for all different sorts of people.

@NotAnotherBathBomb i don’t know you so I couldn’t say :-)

But I do know that according to the diagnostic criteria, for someone to meet a threshold of clinical adhd they need to have suffered serious setbacks as a result of their symptoms. I gave examples of the types of setbacks I have seen amongst my family members, and they are serious ones. What I have observed recently is many adults I know with very smooth functioning happy lives, determining that they suffer this debilitating neurological condition but somehow have just masked it their whole lives. Which is pretty wild.

I couldn’t possibly say if this would be you or not. I would never wish (real) adhd on anyone. Far from being a ‘superpower’, it’s a debilitating lifelong condition with statistically poor outcomes for mental health, life expectancy and a raft of other indicators.