Did you find out that you didn't have ADHD?

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I'll try not to navel gaze but I've been considering the possibility that I have ADHD for a while. Online screeners that don't look too trashy suggest it could be worth going further.

If that's me, it does explain some things and might help me make a career decision that's coming up. If not, it probably doesn't change that much - I could make the same decision, after all.

Was it worth going for a diagnosis? Particularly interested in those who were assessed but didn't have it.

The evidence is clear. The medication has been used for decades. Many people benefit from it. Some don't.

Well people are paying a fortune, the provider is hardly going to say no, you don't have it, are they?

That's what private systems are for, to give those who can afford it what they want.

Explain to me why you would want an incorrect diagnosis of something you do not have exactly?

I think you have misunderstood what I was saying (happens to me a lot!) I was saying people who pay for a diagnosis likely 1) already know they would meet the criteria for diagnosis and 2) have a need for the diagnosis because it is significantly impacting their life (i.e. need to access support and/or meds) I was putting label in quotes as that's what some people call it. I fully support people seeking a private diagnosis and think the reason so many end up with a diagnosis because of 1) and 2).

I - personally - fall in to the first camp but not the second. I wouldn't want to take meds for ADHD being the main reason FOR ME. I know people who have taken meds for their ADHD and have found it helpful. I have no problem with it.

The international stats on ADHD show we have massively under-diagnosed historically. This isn't surprising because our health system, the NHS, has rationed mental health and learning difficulties healthcare to the available resources. The various thresholds are designed around capacity, not absolute clinical thresholds. Traditionally, your neurodiversity has to be so severe that you simply can't function in society, and even then you will be drip fed, delayed, and probably need to go to court to get any support.

Both my daughters have neurodiversity but our local council - one that has been repeatedly taken to court by parents and found guilty - had filtered them both out on the grounds that the school didn't find them unmanageable.

They could continue to go through life hating themselves for being different, eating disorders, suicide attempts etc.

Or I could pay out my precious, dwindling, savings to go private.

I dont believe anyone voluntarily pays thousands in private healthcare unless they are absolutely desperate.

So far I haven't taken the plunge and they are both on 6 year long waiting lists. At some point if I get the money, I would pay. But I worry that it would be discredited by that Panorama programme. So we wait.

I wonder if that one provider was just a corrupt one. I don't think they all are. I think the vast majority of people who apply do so because its absolutely self-evident to them that they have it.

That's my genuine take on it.

I certainly did not pay the money I paid just for the fun of it. I got my diagnosis and medication and it has changed my life. I am in Ireland so there is no social welfare or benefits type thing that I got diagnosed for and anyway I work but I have seen that trotted out here too.

Christ on a bicycle if you go privately you are paying for an assessment not a diagnosis. Many of the private psychiatrists also work in the same field for the NHS which is why they're able to fulfil right to choose requests for the NHS.

The reason the hit rate of diagnoses is so high in private providers is because if you don't have it and it's not impacting your life fairly extensively, you wouldn't go through the stress, expense and sheer weight of admin to get to the point of an assessment.

Would you go to a diabetes clinic if you didn't have diabetic symptoms? Would you persist in trying to get an allergy diagnosis if you were demonstrably not allergic to anything?

I know two people who have been assessed for ADHD via right to choose (so private providers but via NHS) and have not been diagnosed with ADHD. Both have since been diagnosed with autism - the assessment process is different.

It's by no means a done deal just because you hand over some cash.

And I am completely baffled by the people who think we're doing it for a label - we're doing it because the newer research about ADHD in women, and ADHD in adults / late diagnosed, is wildly different from the traditional hyperactive small boy stereotype, and so much of what we've struggled with in life suddenly makes a lot more sense. If that doesn't resonate for you I'd suggest you don't have ADHD and don't need a diagnosis.

Doesn't everyone who goes through online screening get diagnosed?

We have parents every day coming to us (a Local Authority) to tell us their children (and often them too) have been diagnosed with online screening. Not heard of one who has been turned down and is asking us to assess.

Hi! I was absolutely convinced I had it, and that since having a baby in 2020 that various elements of my personality which I just thought were standard things for everyone, were actually indicators of ND, and which were becoming more prominent for me since becoming a parent. I was able to get a referral for testing through work, and following various steps, the outcome was that I didn't have it (essentially you need to score min of 3 out of 9 for AD and HD, and both as an adult, and as a child - my adult scores were 7 of 9, but only 2 of 9 as a child so I was deemed not ADHD). This is fine by me but there seemed to be much placed on my mums assessment of me as a child, I'm one of four and there are elements I remember strongly about my childhood that my mum had no recollection of whatsoever so I'm not sure that so much weight should be on her 30 years ago memory of these things but what do I know ...! Happy to tell you more about my experience if it would be helpful

No. They don't.

I'm on lots of ADHD forums and have come across plenty of people who had a private assessment and didn't get diagnosed with ADHD. If you want a private assessment use one of the providers that have NHS contracts. In some areas of the U.K. they'd be who you'd be referred to for an NHS assessment anyway.

Alternatively wait on the waiting list. It's long but you'll then have no issues accessing medication if that's the route you wanted to go down. And you'll get to front of the queue quicker if you are actually on the list!

They shouldn't have just gone on your mums recollection like that they should have included your recollections and examples as well when considering childhood impact. Do you have anything like school reports that could back you up?

I have my own examples of what I was like in childhood. I couldn't remember much tbh from very young but tbh I think my ADHD symptoms only became very apparent from when I started secondary school and had to start organising myself. So I had a fair few examples of that to give them. This is fine as symptoms have to be apparent before age 12.

I don't understand what you mean by private ADHD medication 🤨 I was diagnosed at age 25 I'm 43 now and I can honestly say being medicated absolutely turned my life around.

Also they should be aware that people often get the forms wrong. For example my DH originally put that I didn't ever start "projects" and not finish them on his form. Which is ridiculous as I do this ALL the time. So I gave him multiple examples of things I had started but never finished, and he said "oh yes, you do do that!" 🤦‍♂️ I think the "projects" word confuses people. It did me when I first started considering ADHD until I realised what they meant.

Incorrect? People have long since diagnosed themselves, like the OP, online questionnaires and the like, of course they are sure before handing over money!

I haven't diagnosed myself. It seems very possible to me that my Dad had it. He died five years ago and I have thought about what might have been different if he had had some support and understanding of it and himself. I'm like him. I began to wonder if it could apply to me too, particularly since i had some work problems and changed jobs. I wasn't expecting that the screener would hit the high score it did (i did one for dyspraxia which didnt), but it's a screen not a diagnosis.

Thanks @RainbowZebraWarrior - that was the screener I did, though from another website. I'm glad it is a decent one.

For those who found out in later life, what did the medication do for you?

BBC Panorama did a programme recently on private clinics 'diagnosing 'adhd. They had a guy who was tested by a proper psychologist who told him he did not have it. Then he used online clinics who all gave him a diagnosis and the right to medication.
I will try and find the link

My DH and I are both diagnosed. It’s really helped. He is medicated and I am not (I also have Bipolar, another condition people are sure ‘everyone has to some extent’ until I explain the multiple sectionings in early adulthood). I have still found the diagnosis very helpful as I’ve found and implemented so much information about how to manage things I find hard. Medication has to be used in tandem with techniques for the best results - it’s helped my DH.

A good friend of ours was assessed and got no diagnosis. They went private and were told that their issues, though on the surface easily mistaken for ADHD, didn’t fit the criteria. My SIL also had the same experience with autism - assessed privately and no diagnosis. I also know another person who was told their issues were related to trauma and not ADHD. (They were also assessed privately.)

The assessment should involve talking to those who knew you as a child, trauma, childhood experiences etc. I had extra assessment sessions and had to provide medical documents from the time of my Bipolar episodes as they had to look carefully at what was what. It should be in line with NICE guidelines.

Agree with a previous poster the stats are complex as those with ADHD are much more likely to seek assessment and come out with the diagnosis. However, there are those who don’t get a diagnosis - it’s just they are less likely to seek assessment and more likely to have other issues that mean they experience similar symptoms.

DH says it reduces that ‘Oh god no I really can’t do that’ feeling and suddenly things seem a bit easier to get on with. He’s inattentive.

A friend of ours found it changed her life. She was struggling with everything, but overworking, living in chaos, emotionally not managing - now she’s stable and very successful and her house is lovely. She uses lots of techniques alongside the medication as well.

I was on blood pressure meds for unexplained high bp and also medication for anxiety. I have come off both and take concerta instead. It has calmed me, helped me focus better and for the first time in about 30 years or more of insomnia I now sleep all night every night.

Just to add to what I said about we paid privately for assessment for DC and they don’t have it

We initiated the assessment due to concerns raised by school.

I've just been diagnosed. Still unsure if I am or not. Because obviously to me, how I am is normal. I am aware I struggle a LOT. I've always assumed everyone struggles the way I do. I think it's so hard to know because we only have our brain. We can't experience another brain to compare.

I paid for initial screening for ADHD (to see if it would be worth pursuing the full consultation) when going through diagnosis for autism, as I do have a large number of the 'characteristic' ADHD traits, but I was told that in my case it could all be explained by the ASD diagnosis alone as there is a wide field of overlap in the presentations.