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.

I would strongly dispute that it’s easy to see or meet the needs of someone nonverbal, even in theory, unless you deny them any sort of autonomy and assume needs are limited to ‘offered food and the chance to wash.’ Honestly, it’s much more complicated than this when you’re taking about an adult, but just look at all the threads here with despairing parents of nonverbal NT toddlers to see how ‘easy’ it is.

There are a lot of leaps of logic on this thread:

there is an industry making money privately diagnosing adhd in those without it; “how dare you say my adhd isn’t real!”

the top NHS psychiatrist knew he was being filmed so was bound to have done a slapdash assessment and put his professional reputation on the line by telling someone with adhd they didn’t really have it - in a widely broadcast documentary

this particular private service wasn’t featured; that must be because they diagnose correctly and that proves that there aren’t some services over diagnosing even if some clinics featured do

they must have adhd because their lives are hard therefore it can’t possibly be another condition which might also make their lives hard

being incorrectly diagnosed with adhd and therefore not being treated correctly for their true condition is ok because NHS waiting lists are too long

Private health care is not like NHS health care. Waiting lists, costs and workload mean the NHS is much more conservative. By contrast private providers have a very direct conflict of interest. They make more money off patients who have treatment than those who don’t, and also means they have an incentive to keep people happy (not healthy) by meeting their diagnostic expectations. It would be more surprising if Panorama did not find evidence of overdiagnosing, than that they did.

For anyone who's interested, ADHD Foundation has issued this statement in response to the programme.

It’s definitely a spectrum. I have an ADHD diagnosis, NHS funded referral to private provider. Not one featured on the programme.

I’ve also said on here (diff user name) that I think the threshold is higher in NHS services. Not a popular opinion on here.

Lots of people can have these behaviours to more or less a degree. Sometimes people are able to manage them better as an adult even if they did have them in childhood. Sometimes not.

The key is how much it impacts on your life to the point that you’re actually having major problems. Particularly noted difficulties with work, social interactions, relationships, life admin. Serious executive function issues. Trauma response and anxiety can also have similar symptoms. The meds can have serious side effects so there needs to be a really good cost/ benefit ratio. It requires thorough psychiatric assessment.

ASD, ADHD are not mental health issues they neurological differences. In many instances they can lead to mental health issues but they are different things.

Spectra, and spectrum disorders, do not have a mild end and a severe end. That is a very dangerous misconception.

Personally, I believe and have always believed that ADHD is a form of autism. I and almost all of my ADHD friends have sensory issues, extreme hyperfocus when interested in a subject and difficulty socialising with neurotypical indviduals. (alongside the usual ADHD symptoms)

Apologies @Righthandman poor phrasing. Maybe better to say people are likely agree someone severely affected, eg non verbal, needs support and it's unlikely to be disputed- fully appreciate its very complex in practice.

Whereas there are PPs in this thread who refuse to acknowledge someone who can mask might need any kind of support (or compassion, empathy or just not flat out hate directed at them).

I’m an NHS GP.
On the shared care prescribing there is no obligation for shared care between private providers and NHS for anything not just ADHD meds. This is for a variety of reasons but it might be because of concerns about what the private provider is suggesting (I have had a private clinic ask me to prescribe medicinal cannabis for a patient with no reason to have it that would be covered by NHS guidance or even UK law). It can also be due to concerns about what care private clinics will provide for follow up or what will happen if the patient becomes unwell due to medication prescribed. The legal responsibility is with the person prescribing so if I am going to prescribe some medication with serious side effects or risks associated with it then I need to ensure that either I know what to look out for and how to deal with it or that there is a specialist regularly seeing the patient who does. That is the purpose of a shared care agreement signed by specialist, patient and GP. It clearly sets out everyone’s roles and responsibilities.

I have undertaken shared care with private consultants in the past but only when I am confident in the skills of the specialist and that they will fulfil their obligations on reviewing and actioning any problems; that I have spoken to the patient and they have agreed to fulfil their part e.g attending reviews, having blood tests if needed and that if they don’t or can’t then I can no longer prescribe. I don’t like that it means they have to continue to pay to see a specialist and usually they are waiting for the NHS to see them anyway but sometimes it’s the least worst option if it means they have medication they need for now.

As others have said, the scandal is how this government has undermined and underfunded the NHS forcing people to wait years for treatment or go private.

Sorry that was supposed to a reply to @NotAnotherBathBomb post at 12.44 yesterday but reply function didn’t work 🙄

Qualifications? Profession?

Or just random 'this is what I think'?

Undoubtedly it falls into ‘neurodiversity’ as an umbrella term and well established that neurodiversity conditions often co-occur.

It is an Internet forum to be fair, it’s mainly ‘this is what I think’

Mabelface · Yesterday 10:51
I don't like the spin that's been put on this, as the reality is that adhd is under diagnosed and waiting lists, including now for private assessments, are getting longer. You have symptoms indicative of adhd therefore you have a diagnosis. You're not just lazy. I was diagnosed last year (on top of an asd diagnosis) and the validation is huge. The meds have transformed my life.

The thing is that someone could have all the symptoms but those may not be as a result of ADHD. People need a diagnosis based on having taken account all the differentials first.

Therefore it would be incorrect to say,” You have symptoms indicative of ADHD therefore you have a diagnosis.”

Neurodiversity also includes; dyslexia, dyspraxia, epilepsy, acquired brain injury, dementia, stroke, very high IQ, learning disability, cerebral palsy, sensory processing disorder, left handedness, Tourette’s syndrome, auditory processing disorder, sensory impairments, foetal alcohol syndrome, other teratogenic conditions, Rett’s syndrome, other genetic conditions, Parkinson’s disease, other degenerative conditions, attachment disorders, BPD, schizophrenia, mental health conditions, PANDAS, other brain infections….

I think you mean neurodevelopmental conditions.

@Garethkeenansstapler

And as part of a general discussion it's reasonable to ask if people are qualified or 'laymen' for want of a better term. That way you know how to formulate your response. Not sure why you felt the need to jump in there really?

No I meant neurodiverse in the sense most people understand it vs neurotypical though I take your point that neurodevelopmental may be more accurate or specific.

I think we could argue about whether some of your list can be considered neurodiverse but that’s not the point of the thread!

There seems to be a general misunderstanding of what a spectrum is in a STEM context - including a medical context. Hopefully this explanation might help a bit.

I work in STEM research and spectra are used in many different disciplines to identify or classify complex systems with multiple factors into sets that can be understood, and studied, and to clarify both challenges and opportunities.

I've been trying to think of a not to sciencey analogy and this might be a bit daft but the clue is the name. I have no idea whether the following is a thing but hopefully you get the drift.

Happy frogs, sad frogs, and environmental spectra.

A suitable environmental habitat for froggy can be measured by a number of environmental factors. Max and min temperature, humidity, food type, food availability, pond availability, water temperature, prevalence of predators.

We compare three habitats. The first is high humidity, constant warm temps day and night year round, lots of yummy bugs and creepy crawlies to eat, not just ponds but a full on jungle, very few predators.

The second has scorching day times and freezing nights, bone dry, few bugs, no ponds or water, and everything wants to eat eat froggy.

The third has rather cool but relatively constant temps, muggy sometimes but not too often, puddles more than ponds, cold enough in winter to make froggy sleep for a couple of months, and if only the two legged beasts didn't poison the slugs, his tummy would be a lot happier too.

Each of these habitats are clearly identifiable by the their common qualities. Rain forest - very happy froggy. Desert - very dead froggy. Oceanic - froggy has twenty different terms for rain and is weather obsessed.

Each of these habitats have the same parameters that can be used to identify how happy froggy will be. So I'm sure the spectra for the Atacama and the Sahara will both shout, desert, don't go there. The Amazon and the Congo rain forests will be froggy's top holiday spot to get away from very average Northern European or Colorado winters.

The point of this is that all these places have the same traits, just in a different abundance or quantity. It is the abundance of each trait that results in a pattern, called a spectra or spectrum, that identifies a place as rain forest, desert etc.

The is no mild end or severe end, just different patterns.

When applied to neurological disorders or conditions the pattern can be used to describe a particular diagnosis, what it can't necessarily do is identify the specific needs of an individual. Some froggies will be very happy in the jungle, some more so at the bottom of my garden.

Also check mass spectrometry.

Yes, me too.

Thanks for your reply @RagingWoke I appreciate it. Yes, In some basic respects agreement that support is required is easier to come by.

Support, compassion and empathy are in woefully short supply generally, it seems. I agree a lot of people who are skilled at masking and coping could do with a lot more of all three.

I liked the frogggy that's a bit weather-obsessed and has different names for rain. 🤣

Anyway, so the spectrum is that autistic people or people with adhd have most or all of the traits but in varying degrees/intensity. The intensity is where the spectrum lies, not in the traits.

In other words, even if you/"everyone has some adhd/autistic traits", if you don't have most or all - regardless of the intensity - it doesn't count as autism/adhd and you won't meet the threshold for diagnosis.

Is that right?

Yes thats it. If you look up autism wheel (if you’re so inclined) there are various visuals which show the types of behaviours and traits associated with asd and / or adhd and if you score enough on enough of them then you qualify for a diagnosis, this explains why you can have polar opposite people with the same diagnosis, eg: some autistic people very loud and gregarious, others painfully shy.

I’ve named changed to post this as it’s pretty identifying. I wanted to add something to the debate after reading so many comments wondering why anyone whose life was fine needed an ADHD diagnosis.

I’m in my 40s. I went to Oxford, have had a long career in some highly selective environments and currently work for a Big Four firm. I am happily married with four children, live in a beautiful house, and have friends.

I was diagnosed with ADHD a few years ago as an adult by a psychiatrist who carried out the full assessment on me in person, including a full psychiatric work up.

The first time I tried to kill myself I was 8, after Brownies. I spent most of my school days friendless because I had no idea how to make friends, sobbing in corners because I found life so hard, and school refused as much as I could. My mother used to threaten me with foster care because she found me so difficult. I only ever did homework at the very last minute, and not at all if I could get away with it. My life was chaotic; I forgot PE kits/school materials/money. I overate compulsively. I talked too much, all the time. I got straight As at GCSE and top A level grades on the back of almost no revision because I have a photographic memory and crammed the night before each exam.

I went to university and the wheels totally came off. I spent my first year alone in my room, put on three stone, had no friends and did badly in my first year exams. I was totally overwhelmed by the whole experience. There was no structure at all and I couldn’t make anything work. clawed it back a bit and my final year included group work which gave me the support I needed to scrape a good degree mark.

When I started work I ended up having to live alone as I was too messy and disorganised for flatmates to cope with. I spent a lot of weekends by myself as I was so wiped out by work. I got a very competitive graduate job and struggled with it every day as I had to try so hard to do it. I was too scared to look for something else and the expense of living alone meant financially I was stuck. I was mostly single. I was in constant debt, late with bills, awful credit rating, and my home was a total tip. I was embarrassed to invite anyone round.

I was lucky enough to end up in a wonderful relationship with someone who’d been a friend for a long time and even luckier that he is very happy to be a ‘wife’. Left to my own devices the kids eat dinner at 9pm, and go to school in dirty or damp clothes, and missing their packed lunches. I have found a job that plays to my strengths of working at speed, on short term projects, in a team. My lifelong history of poor mental health and treatment has come to an end because I finally understand that my cyclical depression was actually ADHD burnout, and I now have coping strategies to stave it off. I have friendships that work because I work around my ADHD traits rather than trying to ignore them and sabotaging my relationships as a result.

If you only knew the headlines of me, you would wonder why the hell an ADHD diagnosis would apply to me, or matter. But it changed my life.

@IHadADreamBut pretty much yes.

A trait has two components, first a descriptor e.g. patience, and then a value e.g. patient vs very impatient.

We will all have a measure of any particular descriptor, but it is the pattern across a range of descriptors that defines a spectrum.

Everyone has more or less patience, but my ADHD makes me the worst person to go shopping with - I don't do browsing.

Does that make sense,?

OK dyslexia is the example you want to use then…that’s also a spectrum disorder with different manifestations and mild to severe symptoms. And yes you can mask dyslexia…see “stealth dyslexia”

How about ASD. Are the children I know who are coping in mainstream education not “really” autistic? Are my ASD diagnosed colleagues not genuine because they are holding down a professional job?