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.

What do you report if you have no idea what ADHD is and the issues it can cause though?

Someone upthread refers to the light bulb moment when you first find out about ADHD. Like a lot of adults, I was diagnosed after one of my children was identified as having ADHD, and until that point I’d never considered it, knew nothing about it, and would have laughed at the idea that I might have it. As it was, I had a fairly typical ADHD experience.

Being interested in the subject can create hyper focus.

Being able to read very quickly is also helpful or having a photographic memory or having a creative brain that can hold and compare many different viewpoints at once. Not unique to ADHD but the ADHD individuals I have met (who are sometimes also autistic) to tend to have one or more talents that can make them absolutely brilliant in some areas, as well as being chaotic and overwhelmed in others.

A lot of adults seem to be diagnosed recently despite reporting zero issues in childhood and during their school/college/uni learning journeys.

I never reported any issues during my school or uni days, and none were flagged by educators because academically, my performance was fine and the marks were there.

The process of getting to those marks, though, that was where all the symptoms hid. The superficial view of grades only as the way to assess whether or not someone struggled in school is part of the issue.

Well yes, if you’ve always been able to learn stuff after reading it once, and then get to Uni and have to develop a whole new skill set, it does take a while to develop. People who have to work at recalling facts have been learning that throughout their school career.

We have definitely seen some very dubious private diagnoses at school, even after the NHS had said no to ADHD or autism. I think the trauma response is interesting and would fit several of the cases I know about.

You're right.

There's a definite social media/celebrity/TikTok effect and because of that, a lot of people think or want to have a diagnosis which may not be accurate. And it moves to self-diagnosis or over-identification and a 'trend'.

Celebrity culture is a blessing and a curse because when celebs come out and say they've been diagnosed with ADHD it can educate and inform. But often it's highly successful people talking only about the positives 'I've got a quick mind, always thought outside the box, worked harder than everyone else as had more energy. I left other people behind who weren't as brave as me in business' etc etc and so some people who aren't as successful think ' well I'm all those things but not getting anywhere with all my blue sky thinking ideas so maybe it's ADHD and it's holding me back because people just don't recognise how brilliant I am?

Or it's used as PR as an 'excuse' to minimise bad behaviour. Like when Ant McPartlin got caught for drink-driving and came out saying as a result of that, he'd been diagnosed with ADHD.

And it's very difficult to have a productive conversation about it as a lot of people get really defensive and think you're saying you don't believe in ADHD or think they're liars or are making wild claims that private assessments don't always equal ADHD because it's a lucrative industry.

So I'm glad panorama have looked into this. It's been a long time coming.

Have wondered the same thing, op. But I'm also waiting on the nhs pathway after 2 different nhs professionals flagged it up as a possibility. I did a fair amount of research before approaching the private clinic and have reason to be knowledgeable about diagnostic processes, I felt comfortable with the rigour of the private clinic.

Ultimately, I'm taking medication and the diagnosis is hugely helpful for me personally but hasn't made a material difference to my life.

My adult daughter was dx privately- it was a lengthy process- she has been medicated- the change is incredible- definitely appropriate in her case.

Not all cases will be incorrect! How would you know if you have not followed the advice and taken the meds?!

My daughter was diagnosed with ASD, which I know isnt the same thing, but also ADD, at a private clinic. We had gone private as she was 14 at the time and out of school. It wasnt a quick diagnosis at all, it was 3 days.
Then her NHS appointment came through - we had asked to be referred to the Elizabeth Newson centre in Nottingham, which was out of area and needed to be funded by our local NHS trust, but it was a specialist PDA centre and she would be seen by Phil Christie who at the time was one of the top people in this. That assessment took an afternoon, and correlated absolutely with the private diagnosis. It gave us confidence when then my son (who was more typical), my partner and myself all went through the same private practice. My son didnt meet criteria for ADHD, the rest of us did.

anywhere that is diagnosis after a tickbox of questionaires, without in depth medical history, and feedback from other sources, isnt really doing their job properly.

Not all private clinics are 'you get what you pay for' but I suspect some are. Not all NHS assessments are bullet proof either, especially if it comes to women and girls, or to more nuanced or masking behaviours.

I have been diagnosed with ADHD privately in the last year - it was picked up by NHS mental health and I was advised to go privately due to the waiting lists. I saw a consultant who is the local NHS ADHD lead.
My diagnosis was lengthy and in depth - various people provided detailed information on me and my childhood.
I've achieved in some respects buy ADHD has had an enormous impact on my career and all my relationships. It has destroyed a lot.

My consultant was clear that the standard of diagnosis was the same for the NHS and privately with him. No differences.

Given how difficult it can be to receive a diganosis I think the scandal probably lies in the postcode lottery of time it takes to get an NHS diagnosis - there are areas with wait lists over 5 years so I am not surprised desperate indivduals seek a private diagnosis.

The NICE guidelines last time I looked were that GPs will only enter into shared care for stimulant controlled drugs if the individual is overseen by an Adult ADHD specialist who provides at least a yearly review.

Some GPs go off piste though. And some GPs even refuse to enter into shared care for stimulant prescriptions with the person is under an NHS specialised Adult ADHD clinic.

See how it goes. Put in a complaint about the GP surgery if needed.

@Willyoujustbequiet

A couple don't bother with the meds. They have used the diagnosis to apply for PIP and were open about it.

How do they evidence their difficulties?

I can’t help but notice people, mainly women on SM, who did well at school but didn’t do so well at university or at work, and they’re looking for an explanation.

Thank you for the advice. I’m part of a few ADHD forums and yes I’ve seen people get shared care with the agreement to have their yearly check-ins with the private company and I’m prepared to do that. Before I sought my diagnosis privately I asked the GP receptionist if that was something the practice did and she said yes, but that was about 8 months ago and things maybe have changed/tightened since then.

I did very well at school, primary school particularly. I was interested in EVERYTHING, I was basically a star pupil.

But I think it was the perfect environment for me - highly structured, almost no need for planning, preparation, time management etc, high degree of novelty in both subject and type of work.

If my job now was to spend an hour learning about the Roman Empire, draw a picture of an ampitheatre and then go out to run around outdoors, I'd be thriving.

Maybe I just can't 'adult'.

I did well at primary school but the rest was downhill. I still left with a degree but have nothing to show for it. I chose a subject that I thought would be easy enough for me to manage doing the bare minimum. I was one of those children whose reports consistently said 'she's bright BUT'.

Sadly I grew up in a country where diagnoses like ADHD and autism are still heavily undiagnosed, children are just 'strange' or 'naughty'. Imagine what that was like 25+ years ago.

It's not common to get PIP for 'just' ADHD in adulthood but it happens.

I helped a few people get it who weren't on meds. They all got top rate care and middle mobility.

It's not based on whether you can dress yourself or not. There are lots of assessment areas.

One got it straight off as the assessor called me and I think she felt sorry for him due to abusive childhood among other things.

Others got zero points or just a few at assessment that I attended. Rejected at mandatory reconsideration, went to appeal and got it.

They were seriously debilitated by ADHD though. Well, one wasn't entirely but I only found out later he was a bit of a blagger.

I was diagnosed 6 years ago - through the NHS - age 43. My diagnosis appointment was 3 hours long, face to face. I actually thought that was part of the test. We're so used to masking and faking being normal, you'd need to put us in the spot light for several hours to see the real us 😄.

I agree with you nodogz, I don't think of it is a disorder either, just a different type of brain that is not so useful in today's society. I haven't told many people at all about my diagnosis. I can see how it is viewed skeptically and negatively and it is really difficult to make people understand what it feels like to be built this way when all they associate with ADHD is boys and hyperactivity.

Hopefully one day there will be some biomarkers identified or a medication routinely prescribed that is not a stimulant.

I was only prescribed stimulant medication. I couldn't take high enough dose to make a difference before I got symptoms of anxiety. On the lowest dose it calmed my mind and made me less anxious, as it stopped the constant busyness in my head. It also allowed me to articulate myself effectively. I'm often envious of other women who claim medication has been life-changing.

No. Simply because Dh was exactly the same. DH scares people with how smart he is.

DS is not average. He knows the goddam answers. That's why it's so frustrating. He is doing stupid shit like putting 67 on the paper when the answer is 76 and he is verbally saying 76.

Doing that is the difference between levels. Just a few marks of doing this crap.

We know he can do it and knows the answer. He's just not doing it where he needs to for assessment purposes.

As for missing out whole pages... He hasn't even noticed there's another page. That's just not paying attention/ being able to concentrate. It's constant like this.

His ability to lose things at school is off the scale. He now has a strategy in place to help him because it was so problematic at one point. Every hometime he was last out, after failing to find his stuff and us all having to search for it.

He just gets bored in class and can't hold focus for five minutes and do his writing cos he's in his dream world and has to be snapped out of it. But if you ask him a question he will give you a verbal 10 minute explanation if you let him. His teacher does this all day long, just reminding him to do his work and he goes 'oh yeah sorry' and starts writing again!

It's like a disconnect between his head and paper. It's nuts.

I've SEEN him doing it at home and his teacher is saying the EXACT same thing.

He also can not sit still. He's constantly falling off his chair. He constantly is doodling and drawing. Over everything.

His memory is insane. He remembers everything. In a way that's unusual. Again commented on by school.

She's said he will probably eventually ace GCSE exams and do really really well just because he can. It's his memory that's key to this. But will struggle with coursework. And that's EXACTLY how I was. DS is 8 and his teacher is saying this already. He's 'different' to his peers.

I've been conscious of being biased over this and looking at him with parental rose tinted specs so I was wary about whether we were just seeing something because we wanted to.

It was a relief when his teacher started to say the exact same things that we were seeing and are worried about. And to mirror DH and I when we were at school. His teacher was unaware of our experiences.

If it was just me saying this, I think you might have an argument. But it's not. It's been observed and recorded on his teacher referral for ADHD.

The Internet. Including forums like MN where virtually any kind of behaviour mentioned leads to people suggesting ADHD/ASD/anxiety/OCD/NPD.

A few questions:

1. How long is the NHS waitlist for diagnosis for this and any other mental health issue, etc?
2. ADHD is more prevalent, proportionally, in the USA, why?

Also:

1. There are meds and there are meds, some work for those with ADHD and others don't and then there's the titration...etc..
2. Some women I know of use it to control their weight, it can be dangerous in that regards and addictive NB: Lilly Allen.

Right now, it’s all over the internet. But the question was why people didn’t report any issues during their younger years. I was going through huge issues (I now know) in the 90s but had absolutely no idea that I might have ADHD.

@wnaderingmind have you been tried on Atamoxetine? It’s non-stimulant and addresses anxiety.

Did she have traits / symptoms tho except anxiety etc. What age did you realise she may have ADHD? My DD was diagnosed at 12 once she couldn't cope properly at high school.. but signs had been there since she was tiny

@TrollyHolly

They all got top rate care and middle mobility.

You don't get middle rate mobility

And also have multiple mental health crisis and various diagnosis...

...that bit get missed out of the conversation.

I think their are unfortunately some Charlatan adhd clinics out there - but likewise the nhs is always going to err on the side of what saves the system money. We pay privately for my son’s adhd meds and they are £30 a week. But they help him, they wouldn’t help him if he didn’t have adhd.